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#I went to a neurologist and they did not ask ANYTHING about my medical history
tj-crochets · 8 months
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Hey y'all! A word of advice about going to a new doctor (this is US-based, but I think might be applicable to more than just that): If they do not ask you for your medical history, that is not a good sign
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Daisy H. at the Midwest Center For Youth & Families
I went to South Shore Academy willingly, asking my family for help. This facility's staff uses force and threats to control the patients. On their website, it says from their patient surveys that over 90% of patients were satisfied with their care, understood their medications, etc. I too took this survey, here's the reality: a staff member handed it to me while I was crying and stood over my shoulder while I filled it out. She then guilted me about my answers and told me I was lying and had me either justify my answers or choose a better score. There was a section where "favorite staff" could be listed and she "suggested" to me who to list. These surveys do not represent patient experiences.
Staff would do whatever they wanted. Staff would routinely express their controversial political opinions against the wishes of some other staff and the residents. Staff members would express their physical attraction to underage characters and actors in movies residents would watch. Staff at one point threatened my whole unit with "cavity checks". (They did not go through with it.) Staff would use blatant judgment and call patient's families' parenting styles "horrible". The "patient advocate" was also the head therapist (essentially the boss of the program) so when grievances went to her, it was nothing she wasn't already aware of, nor would she address the issues. In her defense, she may not have had administrative power to do anything, which is a bureaucratic problem in itself. Staff even gave kids with severe allergies (noted in the patient's charts, which they routinely admitted they did not read) food that would send them into anaphylaxis against the child's request, saying things like "it won't kill you". Staff spent a large chunk of their time complaining about how little they get paid and making a point of it to express how unfair their jobs are, mentioning things like how they can't get through their shifts without multiple energy drinks. A staff at one point was heard late at night complaining about a "frequent flyer" patient at the Kouts facility saying "I wish he would have just got it [suicide] done already; he's the worst!" I routinely saw staff put children in holds, once with four different adults lying on top of a child, one on each limb, kid face-down on the ground, with the nurse onsite checking their pulse every five minutes.
The nurses did not have personal boundaries and would routinely touch/hug/grab patients without their consent. Nurses also routinely attempted to give patients the wrong type/dose of medications and refuse to administer PRN medications saying that "the patient was becoming reliant on drugs and not trying hard enough to use therapeutic skills" (to kids with no history of substance abuse.) The doctor was a whole different story. He also used the "not trying hard enough to use skills" line. He refused to address my rapidly worsening tic disorder, telling me "they aren't tics" which my pediatrician and neurologist at home adamantly disagreed with, and dismissing me and all of my concerns and complaints about side effects of my medication.  
Patients were only allowed to talk about their feelings, diagnoses, beliefs, religion, past experiences including trauma, etc. about three times a week: once in individual therapy, once in family therapy (if you were lucky enough to be invited), and once in process group (group therapy) (again, if you were lucky enough to be invited). I could write a whole book about my experiences and the things I saw there. To her credit, my therapist was pretty good, especially given the (judgment:) impossible position she was put in at this workplace. In conclusion, please don't send your kid here.
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stillness-in-green · 3 years
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Why Deku's ultimatum to Overhaul is bad and he should feel bad
This is a bit outside my normal character wheelhouse, but I really need to get a rant about it off my chest, so here goes:
The Deku and Overhaul scene in Chapter 316 is terrible. It is fucking terrible.
I took a whirl around Overhaul's tag up through when the leaks first started dropping, but didn't immediately see anyone talking about why it's so fucking terrible, only concerns about letting Overhaul see Eri (understandable, but baseless, I think), some empathy towards Overhaul's current state (totally warranted!), some snark about Deku being So Done with Overhaul (haha because who cares about Deku's stated goal of trying to understand villains, right?), and, worst of all, some cooing about how Deku was being so compassionate and noble by offering Overhaul that olive branch.
Deku was not being compassionate and noble there. Deku was being arrogant, small-minded, and so shockingly cruel that it leaves me speechless that anyone could think his stunted and hard-hearted "offer" reflects well on him.
Deku's entire motivation in this arc has been wrestling with the realization that he might have been able to avoid some of the desperate battles of his past if he'd understood more about the villains he fought. He thought of three very specific people--Stain, Muscular, and Overhaul--as he reflected, "Maybe it wouldn't have had to go that way if I'd understood them better." He then thought of Gentle Criminal and La Brava, people who he’d come to some understanding of, who he’d been able to soften the conclusion of his battle with by going along with Gentle's fiction downplaying what had happened between them. The whole line of thought was intended to contextualize his newfound desire to save Shigaraki.
It soon became apparent that Stain, Muscular and Overhaul were, in fact, encounters that he would be revisiting, as a chance to see how he'd grown since he faced them, and as a dry-run on reaching out to villains that would give him a chance to practice ways he might reach out to Shigaraki when the time comes.
Well, based on his performance so far, the idea that Deku might be able to reach Shigaraki is laughable.
Firstly, his tentative questions to Muscular were ill-timed, all wrong for the middle of a battle. Muscular laughed him off, and I don’t think there’s any version of that scenario in which he would have done otherwise. Muscular was a huge threat, gleefully violent, disinterested in conversation about his history. Obviously, right in the middle of a fight was no kind of time to try to figure out what made the man tick! But Deku didn’t get the luxury of choosing the circumstances of that encounter, so yes, that battle probably was unavoidable, certainly if Deku wanted to stop him from doing further damage. But the idea that because Deku couldn't reach him right then and there, it's impossible for Deku--or, indeed, for anyone--to reach him at all is fallacious. Not every person has to be able to like or understand every other person. If Deku couldn't reach Muscular, so what? That doesn't mean it's impossible that someone might. And that means an obligation to treat Muscular like a human being, to afford him human rights, to not stop trying to find a way to rehabilitate him, even as you safeguard other people against him.
Deku's battle with Muscular being unavoidable was not some great triumph, for all that the narrative used it as an opportunity to let him show off how far he’d come in mastering One For All. In the way that matters, the way that Deku himself is currently trying to better, he hasn't advanced at all. Imasuji Goto represented his first test in the lead-up to saving Shigaraki, and Deku failed it.
His next trial was Overhaul.* Here, again, was someone who Deku was explicitly trying to understand. So what was the one thing that was most key to understanding Overhaul's current motivation? What was the one thing that Overhaul was ranting about out loud, incessantly? And what did Deku conspicuously fail to ask about? Overhaul's relationship with Pops.
This was so easy. So obvious. And Deku didn’t even try. All he could think about in the moment he was faced with that broken man was the little girl that man hurt--all thoughts of trying to understand where the man himself was coming from went right out the window, flown away in an instant. Instead of asking about why Overhaul feels the way he does, he demanded that Overhaul feel the way Deku wanted. He was essentially holding the only person Overhaul cared about hostage for the remorse he wanted Overhaul to feel.
I'm not going to try to armchair diagnose Overhaul with mental conditions. I don't have the educational background, and I'm positive Horikoshi doesn't. But it seems pretty clear that asking Overhaul to feel guilt about Eri was asking for something that he might not be capable of feeling, at least not without years of therapy that he was plainly not getting in Tartarus. And if Overhaul is not capable of feeling that guilt, then what does denying Overhaul his meeting actually solve? Who does it help? It doesn’t help Eri. Doesn’t help the old man. It certainly doesn’t help Overhaul himself. The only person who gets any satisfaction out of demanding remorse from Overhaul is Deku. And even Deku didn’t look like he found it very satisfying!
Another failure. A meaninglessly cruel, petty failure. A failure that served only to hurt a man who was already a live wire of agony, to sentence an old man to a coma he might never wake from without Overhaul's expertise, and to deprive Eri of the only actual family she had left.
And look, Pops might very well not be the ideal guardian for Eri, and I'm not saying he should get to "keep" her just because of the blood connection, but it's not like he cheerfully handed her over to Overhaul and walked out the door! He turned to Overhaul because he trusted Overhaul, because he wanted someone to help Eri and thought that maybe Overhaul could. And when Overhaul's thoughts about Eri took a very dark turn, Pops first denied his request about using her to further his research and then, when Overhaul kept pushing it, chose Eri over the kid he personally took in from the streets by telling Overhaul that he needed to leave the Shie Hassaikai if he couldn't muster any more respect for human life than that.
But, you know, Eri is so cute with Aizawa and stuff. And Pops was a criminal. Probably. Maybe? I mean, he was yakuza, anyway, so he obviously must have been a criminal even if the police never actually arrested him. Apparently, this means it's okay to just leave him in a coma forever! Even though Overhaul absolutely has enough medical expertise that letting him talk to a neurologist about what he did to Pops might enable them to figure out how to wake Pops up even without Overhaul being able to use his quirk to undo the damage. Hell, Overhaul is also the person alive who has the best handle on how Eri's quirk works. He might even know what her accumulation condition is. Maybe a better thing to ransom his access to Pops with would be Overhaul telling Aizawa everything he knows about Eri's quirk so Aizawa can use the knowledge to help her get a better handle on it.
But no. Obviously undoing some small part of the concrete harm Overhaul did was less important than how Deku felt about that harm.
And there's more! Oh, is there ever. I called Deku arrogant before; let me circle back to that.
Deku said that if Chisaki would feel the way Deku wanted him to feel, then Deku would uphold the promise to let Overhaul see Pops. But where in hell did Deku get off making that claim? Deku is a student. He's not a pro. He has no authority, medical, legal, carceral or otherwise. He has no say in where Overhaul goes or who he's allowed to see.
What the fuck? What the actual fuck? What kind of strings did Deku think he could pull that he could just casually make that claim without so much as going into a huddle with Hawks and Endeavor about it first? How inflated has this kid's sense of importance gotten that he made Overhaul that promise without even stopping to think about whether it was something he was in any position to ensure? It was such a bullshit ultimatum, not only because of how needlessly obstructive it was, but because it was so formless.
"If only you would feel a wish to apologize to Eri…" Okay, so what if Overhaul goes back to prison and, three days later, calls out to say, "Okay, I thought about it and I really feel like I want to apologize, now can I see Pops already?" Who gets to make that judgment call? Deku? Is he going to drop his faux-vigilante act and come visit Overhaul in prison just so he can squint at the man really hard to see if he's lying? Is Deku going to delegate the call to someone else? All Might? Hawks? A prison warden? A psychologist? Who? Who gets to be the one to say, "Okay, I think his remorse is genuine."
Then, once that call has been made, how many people have to arrange for Overhaul to be escorted out of prison and to whatever hospital Pops is in? Will Deku get to oversee that visit? Does he think he can overturn a warden declaring, "The scum doesn't deserve a visit, and the old man probably doesn't either," or a doctor protesting, "I'm not letting that man anywhere near my patient!"
The hell of it is, I think Deku could do all of that. He's got a close personal connection to All Might, who was basically a demi-god to this society for decades; he has the ear of the current top three heroes. Everyone is apparently convinced that the power to save this society rests solely in Deku's hands; I'm sure he could ask for anything he wanted. But the fact that that is the case suggests that this society is not even slightly turning away from its dependence on heroes dictating its morality. A hero having the sole right to dictate, out of hand, based on his personal feelings, the fate of people designated "villains" while the rest of society turns away is exactly what Shigaraki is angry about.
The only thing worse than Deku perpetuating the worst problems of hero society in an arc that's supposed to be about him finding a better way is that he didn’t even stop to think about it. It never even occurred to him that that was what he was doing. He thought that what he was asking of Chisaki was just and fair, and thus, he didn’t need to ask for any second opinions or permissions; he didn’t need to think about what would actually be feasible, about what was best for the people involved. He'd made his judgment call about a villain, and that's all there was to it. The villain could fall in line or--nothing. There isn't actually another choice. Hero's way or nothing
I hate it. I hate it. I don't care about whether Overhaul "deserves" to suffer; heroes making the cold decision that they will make him suffer is antithetical to everything a carceral system intended to rehabilitate prisoners stands for. And yes, Japan does at least claim on paper that the goal of incarceration in state hands is rehabilitation.
Restorative justice is superior to retributive justice. It's better for society and it's better for individuals. It is kinder, it is more compassionate. Retributive justice poisons people. It perpetuates suffering for no reason but moral grandstanding. Individuals are allowed to forgive or not forgive anyone they want, but a society should conduct itself with an eye to the long-term welfare of all of its people. That means that even the worst kinds of criminals still have human rights. It means not inflicting pain that serves no purpose.
I've gotten off-track here. Yes, I think that if Overhaul could feel regret about Eri, that would obviously be a positive development for his character. It'd hurt like hell, but it would be a hurt that indicated he was becoming a better person, a person who wanted to do more good, less ill, with his life and efforts. But you can't mandate that someone become a better person. No ultimatum handed down from on high is going to change Overhaul's heart. Telling someone, "I'll help you, but only if you only feel the way I want you to feel. Otherwise, you can just stay there and suffer," is not reaching out to help people who are suffering in the dark, which is, again, what Deku claimed he wanted to do, what he begged for Nagant's help in doing, the way he insisted to the vestiges that OFA should be used.
Deku writing people off because they don't conform to his expectations, because they can't be "good" the way he wants them to be, nor even "bad" in ways he can understand, is him failing to live up to his own expressed ideals. "I wish you'd feel bad about hurting people," wasn't enough to reach Muscular or Overhaul, and it damn well shouldn't be enough to reach Shigaraki.
Cruelty does not beget kindness. You cannot treat people with only callousness and severity, then condemn them for not taking the opportunity to grow. You have to give them opportunities to better themselves. For Overhaul, giving him an opportunity would be letting him help the man he wronged and then moving forward from there. Telling him to feel regret about Eri or else? That's doing nothing but sweeping his pain back under the rug.
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*I have more or less exhausted my outrage over Lady Nagant in chats with friends, so I'll spare the rant on how disjointed, contradictory and ludicrous her turn was; the gist is "very, on all counts."
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P.S. Anyone who says that Overhaul "has nothing left to live for" is being a level of ableist that defies description. Prosthetics exist. Assistive devices exist. Speech-to-text software exists. Overhaul is intelligent, driven and highly educated. Even if he never got prosthetics at all, there would still be things he could contribute to the world if he were motivated to do so. The better thing to do, though, would be to get the man some damn prosthetics, hook him up with the neurologist consulting on Pops' case, and let the two of them get on with the matter of waking up the old man.
P.P.S. Overhaul spent six months in solitary confinement. The United Nations considers solitary confinement exceeding 15 days to be a form of torture. Solitary confinement creates severe mental health issues and exacerbates existing ones. It frequently leads to a deadening of empathy, something Overhaul has in little enough amounts as it is. It is absurd to ask a man who's just come out of these conditions to "feel sorry for what you did to Eri," especially if you're planning to turn around and send him right back to solitary. Tartarus is inhuman, and the only reason more of the escapees aren't total wrecks like Overhaul is because Horikoshi clearly didn't bother to do the reading on the wide array of problems that those characters should be experiencing physically, mentally and socially.
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mandelene · 3 years
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I went off on this one, lol. I decided to incorporate the request an anon made a while back asking me to write about Alfred developing epilepsy in high school so here it is, and I hope it's okay!
Just Another Midday Emergency
Word Count: 1580
Arthur can count on one hand the number of times Francis has called him in the middle of one of his shifts at the hospital, and they have always been for emergency reasons, so when he feels his phone vibrating in his pocket as he’s finishing up changing a dressing for a post-surgical wound, his throat tightens and his feet go cold.
He steps out through the double doors of the unit to the waiting room, braces himself by taking a deep breath, and picks up the call. “Hello? Francis?”
“Alfred’s not well and is being taken to the hospital. He collapsed in class and had a seizure.”
The information reaches his brain, but he fails to process it for several seconds. Panic washes over him, but he quickly shakes it off. He has to stay calm and focus for Alfred’s sake. “A seizure? What kind of seizure? Was he awake and aware or confused? Did he have motor symptoms?”
“I don’t know. You know you’re asking the wrong person. The teacher described it as him having spasms, and Alfred didn’t seem to recall exactly what had happened after it was over. He also hit his head on one of the other desks in the classroom.”
“Okay, so he wasn’t aware, and he did have motor symptoms, then,” Arthur confirms, running a nervous hand through his hair. What could have triggered a sudden seizure? Alfred’s never had a seizure before… “Where is he now? The high school called an ambulance, I presume?”
“Yes, he’s in the ambulance. I asked them if they could tell the paramedics to bring him to your hospital. I didn’t even have a chance to see him, but I called him and he was very shaken over the phone. I’m leaving the house now.”
“Good. You did wonderfully, Francis, thank you. I’ll tend to him. Try to remain calm, all right?”
“You as well.”
“Be careful on your way here. See you soon.”
He hangs up, finds someone to cover for him temporarily, and heads for the emergency department. His timing is impeccable today and the universe seems to be working in his favor because Alfred is just being brought in on a stretcher when he reaches the nurses’ station. He’s about to greet Alfred and ask the EMT and paramedic tending to him about his status, but just as he reaches Alfred’s side, the boy has a staring spell, and Arthur can tell he’s no longer alert.
And then, he begins to seize again, arms and legs jerking erratically on the stretcher. Arthur rolls Alfred’s head to the side and holds it still with both hands so he doesn’t aspirate or hurt himself against the side rails of the stretcher, heart pounding.
“Do you want me to give him—?” the paramedic begins to ask, but Arthur shakes his head.
“Wait a moment,” he says, glancing at his watch to track the time.
And then, as suddenly as it started, Alfred abruptly stills once more.
“About thirty seconds,” Arthur reports, a bit relieved. At least the seizures are relatively short, and he’s not in status epilepticus. It could be worse.
He removes his hands from Alfred’s head and brushes his hair away from his eyes. “Alfred?”
“Mrghh…Dad…” Alfred mumbles, looking exhausted.
“I’m here, love. We’re going to take good care of you, all right? Can you hear me?”
Alfred groans quietly and reaches out an arm toward him, so Arthur leans over and embraces him carefully, giving him a gentle hug.
“...Dad…”
“I know, darling. You’re probably very startled,” Arthur says before he notices a nurse standing behind him and steps aside for a moment to let her properly triage him. When that’s all done, and the nurse assigned to his care arrives, Arthur helps her move him to a room. He’s pleased to find out that Dr. Gilbert Beilschmidt will be the pediatrician checking on him. Gilbert is good. He’ll do what Arthur asks him to do.
And apparently, he wastes no time in coming in to assess Alfred right away.
“Oh, kiddo. What happened to you, huh?” Gilbert says by way of greeting. He gives Arthur a nod of acknowledgment and asks, “Why is it always your kids, Kirkland? Something's always going on with them, it seems like.”
“They like to keep me on my toes,” Arthur replies, staying glued to Alfred’s bedside. He can’t imagine how frightening this must all be for him.
“The nurse gave me a rundown, but can you tell me what happened in your own words, Alfred? I wanna hear it from you.”
Alfred nods, which then triggers him to wince. He has a welt on the left side of his forehead from when he collapsed. “I was in history class and I dunno…It’s a blur. I remember hitting my head on the desk across from me and then my teacher standing over me. And then they called an ambulance.”
“And you’ve never had a seizure before, right?” Gilbert asks, examining Alfred’s forehead before pulling out a penlight and shining it into his eyes.
“No.”
“Okay, look at the light for me, kiddo…I’m gonna put a finger up and I want you to follow it with your eyes, ‘kay…? That’s it…Good. Now, I’m gonna ask you some more questions, and I need you to be a hundred percent honest with me ‘cause I won’t be able to get you the help you need if you don’t tell me the truth. You want me to kick your dad out for this part?”
Alfred seems a little panicked at the idea of Arthur having to leave his side. “No! I mean…He can stay if that’s okay.”
Gilbert gives him a knowing smile and nods. “No problem. So, have you been trying any substances at school? Maybe there’s something your friends have been taking and you wanted to experiment with it? Anything like that at all?”
“No.”
“You’re sure?”
“Yeah. I swear.”
“How about any recent falls or injuries? Did you get in an accident somewhere and hit your head, and maybe you didn’t wanna tell your parents about it ‘cause you were afraid they’d worry?”
“No. Just today when I fell out of my desk in class.”
“Okay, kiddo...Let’s get you some bloodwork and a CT scan to make sure you didn’t seriously hurt your head and to rule out any masses. Then, we’ve gotta get neuro in here to have a look at you. They’re gonna want an electroencephalogram at the very least.”
Alfred furrows his brows. “Electroencepha—what?”
“It’s a test where they’re gonna attach little electrodes to your scalp and check your brain activity for any abnormalities. It takes like an hour or two, and it doesn’t hurt—I promise,” Gilbert explains, giving Alfred’s knee a comforting pat. “Odds are we’re not gonna be able to find out exactly what’s wrong with you or give you a clear answer. You might never have a seizure again, or you might be developing epilepsy—it can happen at any age and sometimes we don’t know why it happens suddenly, it just does. If everything checks out and we don’t find anything serious, we’ll send you home with some anticonvulsant medication to take and have you follow up with a neurologist.”
“…Okay.”
“All right, kiddo. I’ll be back to check on you later. Don’t stress. Your dad’s gonna keep an eye on you for me,” Gilbert says. Then, he turns to Arthur and adds, “I’ll let you know as soon as I know more. I’m betting on epilepsy onset though based on what he’s told me. Don’t freak out, even though I know you will anyway.”
Arthur nods, bids Gilbert farewell for now, and sits down on the edge of Alfred’s stretcher with a sigh. “It’ll be all right, love. Whatever happens, we’ll take care of it,” he assures before placing a concerned kiss on Alfred’s brow. “Also, just a word of warning, your papa is going to be here any moment and will likely be in a panicked frenzy.”
Alfred musters a laugh. “Yeah, he always does that.”
“It’s because we both love you and worry about you.”
“I know. Thanks, Dad…Is it okay to be kinda scared?”
“Of course, it is. Anyone in your situation would be. But the good news is that there’s a very strong chance you’ll feel better with some medication and that there are ways to manage this.”
And then, Francis arrives, pale and trembling. Arthur does his best to explain the situation to him and set his mind at ease, but he might as well not have bothered because Francis runs over to Alfred’s side and starts fussing over him to no end anyway. He strokes his head, tucks him in snugly with the thin hospital blanket that’s covering him, and smothers him in a series of hugs.
Gilbert’s predictions turn out to be mostly accurate. The CT scan comes back fine, and the electroencephalogram confirms a change in brain waves, suggesting epilepsy. Neurology decides to put Alfred through an MRI as well, but as suspected, they’re unable to find a concrete reason for the seizures, which is actually positive news in Arthur’s opinion. At least this means Alfred doesn’t have any tumors or cysts causing the issue and no other physiological abnormalities.
He’s still going to watch him like a hawk from now on though and make sure he stays on top of taking his new medication.
Gilbert was right. Why is it always his kids?
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alittledizzy · 3 years
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More on my doctor visit, since I had a lot of people express that me talking about it helped them out. I’m only just realizing myself how useful it is to know how other people’s experiences went in order to judge my own. Also, it’s long, I’m sorry. 
First, some back story: I went to city clinic that is geared toward low income people. I do fit the low income category but there’s no qualification needed, you apply for sliding scale once you’re there. I do have insurance (through the healthcare marketplace) so if my insurance doesn’t cover enough I will take advantage of that. Before Obamacare, I couldn’t afford insurance so I simply did not go to the doctor. 
A low income clinic is not only helpful with the overall costs but the doctors there know their patients don’t have the income to pay for a lot of extra procedures and that was incredibly helpful to me. He wanted to address the ways to make my life easier, not just order a lot of unnecessary things. 
But - okay, backing up. Based on the advice I got on tumblr, beforehand I wrote out a single page summary of my medical history with this issue. At the top I had my current symptoms, then I had a bullet point list of treatments tried (both from a doctor and also just at home/myself, like yoga) and then I did a list of my prior doctor visits, what they said, and what roadblocks I encountered. Not only did this mean I didn’t have to worry about forgetting, it also meant that I didn’t have to worry about wording things in a way that would lead to a doctor dismissing my pain. I’m better in text than I am in person, that’s an undeniable thing for me. I trusted my ability to write out things in an impactful way, whereas if asked directly my instinct might be to underplay out of anxiety or nerves. 
Luckily this doctor wasn’t dismissing anything. I will say there were a few elements that worked in my favor that I had no control over, and I hope any of you reading this in a similar situation get similar doctors. He didn’t ask what caused my pain - he didn’t try to imply that it was something I’d done, or should stop doing, which other doctors have. He didn’t say it was weight related. He didn’t say a single thing about my weight. He didn’t ask if it was related to my chest size, which other doctors have. I’ve even had some recommend a breast reduction (which insurance wouldn’t pay for). This dude - not a word. 
The things he did want to talk about: my options, the fact that I need to do a risk-benefit analysis for myself, why insurance might have denied things before and what he could do as a doctor to make sure they don’t deny them now. I’m paraphrasing of course, but he said that there are certain buttons you have to push to get insurance companies to do what you want. Some doctors don’t know the right buttons. Some know and don’t really care. But he knows the buttons to push, and he’ll push them. He said the non-negotiable things would be an xray and physical therapy, insurance requires those first, and that it all has to be done within a six month window (which I did NOT know before and might be why my appeal was denied - by then it had been more than six months since my xray, because I had done physical therapy for three months and could only get in to see the neurologist every two months or so). He handed me the paperwork for the xray that day, told me where to go to get it, and said I could do it any time in the next two weeks because he wanted to see me again in two weeks to discuss my results and get the physical therapy scheduled. He’s being snappy about everything to make sure we can get it all done in that six month window.  
In terms of pain management options: he gave me something to counter the issues with naproxen (which is just prescription strength Aleve) hurting my stomach so I can continue to take the medicine that was already helping me, and he put me on gabapentin with a big enough prescription (up to four a day) that I can try it out for two weeks and see what dosage works for me. He also gave me muscle relaxers so I can get some sleep at night on heavy pain days. I specifically did not want painkillers of any kind, just because of a history of family addiction, so I didn’t bring that up and neither did he. He talked about the fact that I don’t need an MRI for pain management but that he ‘had a feeling’ I was the kind of person that wanted to know how bad it was (he’s right. I do.) and that the only step beyond pain management is surgery, which is where the risk-benefit analysis comes in. He explained that when it comes to spinal or back issues there’s only a 40-60% chance that I’d walk away feeling any different. I don’t think that’s going to be an option I personally pursue, but just throwing that out there in case it’s helpful for anyone else. 
Another note: I did this all under the umbrella of a wellness visit/establishing care because my insurance offers a wellness visit free every year. This means I also got a general health exam and blood tests drawn. He’ll be able to check to see if the NSAIDS I was on before are impacting any of my organs using that, plus I’ll know if there’s just generally anything else funky going on.
I’m so happy that this is the experience I had - because trust me, I’ve walked out of a lot of doctors office over the past three years feeling nothing but discouraged and, for lack of better word, small in the face of their attitude toward me and my situation. 
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ironwoman18 · 4 years
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The Worst Third Date Ever part 19
Chapter 19: Confessions x Dates x Decisions
The next day, the doctor informed Spencer that he can leave that afternoon because his MRI was clean and he was more like himself.
Max went to his apartment to get him some clothes and to leave her suitcase in there. Then she drove back and find him with her dad and sisters.
"So maybe we can watch the movie when you get better" said Dom
"Which movie dad?" Max asked as she walked in.
"Psycho. Spencer wanted to watch it... again and I'm sure Eloise will love it" his youngest daughter rolled her eyes laughing.
"Sure dad, we will see" they all laughed "well I guess you have to leave now, Spencer will leave this place in an hour right?"
"Yeah. I will stay with him all his medical leave"
"Ok, take care Spencer and take it easy" he nodded then the Brenner family hugged him then Max and left the room.
"I brought you some clothes. So while I sign up some papers and the doctor gives me the instructions we have to follow during this month, you change and I will come back to go to my car"
"Ok" he smiled and stood up holding her hand then she left him.
At the nurse station the doctor made her sign the papers of his discharge and said to her "ok Ms Brenner. He can't do heavy exercises or lifting heavy things, he can't drive during this week, he can't watch movies with light effects like The Incredibles 2, he will need a healthy diet and do some mental exercise, maybe two hours so he doesn't get exhausted. He can't drink coffee only green tea or chamomile but no coffee, at least for this month and no alcohol" she nodded looking at the list the doctor gave her "I talked to Doctor Hank Thompson to check him in two weeks. He's a neurologist and after he said his brain is out of danger, we can let him do more things"
"Ok perfect. The alcohol will be easy because he doesn't drink it but coffee will be a challenge"
"You can do it. I trust you" Max laughed gently and nodded.
"Thank you doctor. Can I call if I have a question?"
"Of course and take care of yourself and him" Max nodded and went back to his room.
When she arrived he was sitting on the couch and looking at her "are we ready?"
Max nodded "yes let's go handsome. I have to get some stuffs at the store and guess what? You are coming with me" he laughed and stands up then held her hand and both walked to the door as she explained everything the doctor said.
"Yeah I imagined they would say I can't drink coffee. I stopped it when I was having migraines a few years ago but when I got better I started to drink it again" he smiled at her.
"Good" they arrived to her car and she opened the passenger door for him then went to the driver side and got in.
"It was weird" she laughed at that.
"Yeah, normally it was you, my sweet gentleman, who opened the door for me" she held his hand gently and kissed it "but don't worry, in a week you will be able to drive again and be my gentleman again"
He smiled and held her face with his free hand and kissed her, then she started the car and got out of the hospital parking lot.
She drove to a market close to his apartment and parked there. Then they bought some food the doctor recommended and, of course, Spencer gave her facts about each of them and how they will help him.
Then she paid and they left and some minutes later they were in his apartment, she forced him to lay down while she put the food in the fridge and the meat in the freezer.
She later walked in and saw him sleeping, she smiled and decided to cook dinner. So Max walked back to the kitchen and started to make a soup, salad and meatballs.
She was focused in and she did not listened to him walk in "hey Max"
She jumped scared "Spencer... you scared me, how are you feeling?"
"I'm feeling good and I'm sorry if I scared you. You were so focus that you didn't listen me walk in" he sat down looking at her as she cook "what are you cooking?"
She explained the menu and he just nodded and smiled at her "Spencer, what do you plan to do after this medical leave?"
He looked at her then down biting his lip "well I'm still thinking. Because in my unconsciousness I... I have one of those... um... you know close death experience" she lifted her eyebrow "I know it sounds weird but I had it and I saw Maeve, a woman I was in love but she died in front of me the first time we saw each other" he could read her expression of confusion "she had been stalking by someone. At the moment we thought it was a man but them we discovered it was a woman who was upset because she didn't accept her PhD thesis"
"Just because of that?"
"Yes, because her thesis was about a personal theme so she won't accept a no because it means her believes would crumble"
"Wow... you have a deal with all kind of freaks in this world"
He laughed and nods "oh if I told you... I think you would lose hope in humanity" she laughed softly "ok back to the main idea... she asked in this hallucination I was doing what I love"
"And what do you love exactly?"
"Well I love studying, teaching, books, make the difference, make connections, hope, I love you" she blushed softly "so I think I'm doing some of them but I feel like the BAU is a double-edged sword because I make the difference but at the same time it kills part of me... metaphorically speaking"
"Well not so metaphorically..."
"True" he smiled looking down "the thing is that I have three options. The first is leave the BAU, the second is stay as a consultant source which means I don't need to be with the team to help them, and the third one is stay as a field agent"
"Ok... I like the second" she said getting out of the oven the meatballs and placed them in the tomatoes sauce "but is it what you want?"
"I think that option is the safest for me and for our relationship, because this job also taught me that couples normally never last with such schedules"
"You know I will support you whichever you decided to do Spence" she walked to him and sat on his lap and wrapped her arms around his neck "I love you and, for me, you are a hero for what you did, do and will do" she kisses him.
He hugged her "thank you for this, and I will make the right choice"
"The right choice is the one you feel happy and you feel comfortable with"
"You are so intelligent" he smiled and she blushed.
"I will finish these food so we can eat then we can cuddle, maybe watch a movie" he nodded then she stood up and went to the stove to finished the food"
Some minutes later they both eat what she cooked. Spencer then helped her to wash the dishes and both went to his bedroom, changed their clothes and laid there together.
They hugged and she rubbed softly his hair until he fell asleep then she did.
They spent that week playing board games, doing light walks around where he lives and watching movies in streaming.
When Spencer was allowed to drive again, he invited Max on a date. He took her to Williamsburg, they spent the day there watching the museums and going on tours around there.
It was a historical place and they have fun watching some historical representation before they headed to a restaurant.
The restaurant had Virginia typical dishes and the decorations were typical of the 18th century.
They ate their dinner there and then he drove back to DC.
"Did you have fun?" He asked as he drove.
"Yeah, I loved all the esthetic of that place, it's all on point of that period of time. Even the painting they picked to decorate it"
"Yeah and with the old English accent and words. Very accurate" he smiled.
"We are history nerds, aren't we?" She laughed and he followed her.
"Yes I think we are" the rest of the ride back home was in silence. When they reach DC he took the way to the park where they met.
"Um... where are you going?" She asked a little lost because his house was the other way.
"I'm heading somewhere else before we go back home"
She lifted her eyebrow but did not say anything else. He drove some more and parked his car at the park where they met.
"Want to walk around?" She looked around and nodded. He got out the car and walked to her door and opens it, he held her hand and they walked to the park.
They walked in silence, not an awkward but comfortable, they got the the food truck Spencer found her after leaving the hospital.
"Do you want a coffee?" She looked up at him lifting an eyebrow "I won't drink one, I will order hot chocolate or tea" she laughed and nodded so he walked there, ordered and pay then wait for them.
He walked back to her and handed her cup "so why are we here Spencer?" He looked at her innocently "oh don't give me that look. I can tell something is up"
"Why do you think something is happening?"
"Just tell me"
He sighed and drank some more of his chocolate "ok Max" he looked at her "I love you and I wanted to brought you here because this place is full of good memories and that's what makes people happy... and did you know that sm..."
"Spence... I love when you ramble and give me useful facts but... go straight to the point"
"Ok" he took a deep breath and moved his hand to her hair, to places a lock of hair behind her ear. He did an extra move of his wrist and when he moved his hand away there was the ring Diana gave him, Max looked at it and covered her mouth with her hand "remember what I told you that day in my kitchen a week ago?" She nodded with some tears "well I made the decision to do one of the things that I love... I love you and I don't want to lose time, especially after what happened to me a week and 4 days ago so..." he held her hand and looked in her eyes "Maxine Brenner, will you marry me?"
There was a silence, a long one for a nervous Spencer, he was holding his breath and then she nodded "yes, I will Spencer" he smiled and put the ring on her finger then they kissed.
OOooOOooOO
I would like to thank Bohogal1998 for the idea of Williamsburg. I had to do some research and summon my inner Spencer Reid to throw some facts to you.
I hope you liked it and that you find this cute and sweet. The magic trick to propose was something I had in my mind for a while and I hope I did it alright.
I would like some options of universities in Washington or Virginia because I will stick with the canon about part time consulting and teaching, also because I love Reid teacher.
Read you soon.
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dearestmichaella · 4 years
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Why I Want to Become a Good Doctor
Today, we just had our ward discussion with our consultant regarding the patient we saw last last week (Feb 13) in Pasay City General Hospital with our main clinical impression of stroke. He is a 74/M, obtunded, not oriented to time, place and person, non-coherent, non-fluent with dysphasia and dysphonia. GCS 9. If you are from the medicine world, you will probably have a picture of him on your mind most especially about the severity of his presentation. In simpler words, he is most of the time sleeping but whenever he is awake, it’s as if he is confused and not really receptive about the things happening around him. He only conveys his message through moaning most especially if he is feeling any pain in his body. The consultant in our ward discussion is somehow strict but in a constructive way. I find it helpful because he wants us to learn through his clinical experiences. What he usually do is he have our index cards, each with our name on it, calls a random person to present each part of the case. He would ask anything under the sun and we will be graded on that. I usually try to peek on what he is writing in our index cards but he has these random codes. He has his phone on his side with a random series of numbers, he looks at it every time we answer and then he writes it in our index cards. There’s random letters, series of numbers that somehow made me felt like it’s as if a morse code (or maybe it really is?! ty parasite for letting me appreciate morse codes ahhaha). He also focuses on what we really think as doctors as to diagnosis, differentials and therapeutics.  
I really enjoy studying for any case discussions but only when I transferred to a new school. In my previous school where I went in, there’s no much time learning everything. Now that my new school has a different approach on activities like this, it gives me more time reading my medical books. It thrills me finding and getting answers on questions I have on my mind. So I must say prior to our ward discussion a while ago, I really really studied hard. My friend who is also part of the group asked me why I gave so much effort studying for this even on the smallest details. I also asked myself the same question especially during times of frustration and tiredness. I can just actually sleep the rest of the night or perhaps study for other subjects I need to. Last night got me thinking and I just assumed that maybe, I am just like this. I just really wanna know more and I hate myself for that.
Why do I really study hard?
My father whom I loved so much despite and in spite, had a stroke when I was just a first yr med student, supposedly 2nd yr but I got irregular. I only had the basics back then - anatomy, physiology, physical diagnosis & etc. When my father presented with right sided numbness of his upper ext progressing to lower ext, I thought of stroke but not with much conviction. Papa claims that maybe he excessively strained his muscles when he was doing some chores. Papa is generally healthy, not even hypertensive with no known heart problems. Although he is a smoker.  We immediately consulted to a physician, an Internist-Cardiologist, whom I can say is good since he has a specialty. He is also affiliated with good hospitals around the metro. Our consult took only for more or less 5 minutes, asked what’s Papa’s chief complaint, took his BP, typed something on his computer, gave us a request for some labs and CT scan. We had it done but results from the hospital takes days and the doctor was clear that he cannot say anything at the moment without the labs and ancillaries. We had a follow up 3 days after, the CT scan was cleared. At that time, I was already nervous I even asked the doctor if we should be referred to a neurologist  or if we should just go to ER dept of the hospital cause it might be stroke to which he just replied with, “I need to first the duplex scan but if you wish to consult a neuro, you may do so.” Having said that, my dad who found me so annoying that I am insisting to consult a neuro, trusted the doctor that it could be something else. Because again, who am I compared to a specialist. I understand Papa, he was also scared because who wouldn’t it be. But that night, I talked to him with my book on the side, did some neurologic test, in which there are some that he cannot do. I convinced him finally to see a neurologist despite his normal CT scan. The next morning we went to a neurologist and the doctor said it could be a stroke based on his presentation and he needs to be confined immediately. I was devastated.
Papa is okay now though, to the lay what he had is just a mild stroke (medically, there’s no, mild stroke). What he had is an ischemic stroke to brain small vessels hence the, “milder presentation”.
I found myself devastated again today most especially when our consultant a while ago was discussing about stroke. I was amazed because I didn’t expect he would share so much about “stroke” since he is an expert in Gastro. When we were sharing our differentials, he emphasized why in our case, the first think you’ll think of is stroke. Hemiparesis. One sided weakness. Even without laboratory tests/ancillaries, it’s like a bell ringing in your mind. Stroke, an acute onset of focal neurologic deficit commonly due to vascular pathology - the theoretical definition. He even gave us scenarios aside from the case we presented such as, “What if, despite thinking of stroke, patient did a CT scan and found to be normal. No history of other diseases. There’s only one sided weakness. Would you still think of it as a stroke?” It is a challenging question on what should be the next best step for the patient. My classmates were answering - MRI could be requested but Doc asked, “What if the patient doesn't want to do an MRI anymore due to financial problem or what if the patient got mad cause you as doctor said that the CT scan is enough to confirm it’s stroke.” I was just listening, deeply. It is a question not seen on books but often seen in a clinical setting. Moreover, I remembered Papa. Doc said then that it should be a pertinent negative, meaning from there you would think that probably the stroke is ischemic rather hemorrhagic which usually presents in a CT scan, at least days after. The next best step is to administer immediately treatment because again, with stroke, timing is everything.
I did not expect that after this case discussion, I will have the answer to my friend’s question, “Why do I really study hard?”. The answer was simple, deep down in my heart, I want to become a good doctor. I want to save people, more so my family in times of like this. I don’t wanna become the cardiologist who saw my father twice and didn’t give much importance to what my Papa’s feeling. Don’t get me wrong, I don’t blame  him but I am certain I felt like he wasn’t at his best when he saw Papa for whatever reason I don’t know of. Imagine how many patients are being seen by doctors who doesn’t pay much attention. Our mentors would always say to us, ‘Treat all your patients as if they are your relatives.’ They say, being a doctor, is really a calling. It is true that it requires us so much time, patience, hard work, mental and emotional torture but when life and death comes into your table, as humans, what the very least thing you can do? For now, as a medical student, the very least thing that I can do is to study hard with more than I can to become the good doctor I want to be.
Maybe, it’s too idealistic of me saying I want to become a good doctor because soon in the clinical practice, there would be so much challenges. Soon, all patients would become merely cases & numbers. You can’t let all this consume you or else, you wont be at your best for your next patients. It is a situation we can’t help from happening. But why does it seem wrong or hard to become human in a situation we need to be one?
As doctors who have been through a lot. We are made out of the extremes of the extremes situation that humbled us to become more human. And for us to treat another human, we have first to become one.
May I be, when the time comes of burn out and verge of giving up, reminded of this - on why I want to become a good doctor. And hopefully, soon, even I know it’s a long way to go, become one. With God’s grace.
*this blog is made out of tears and extreme passion*
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elitemeowmix · 4 years
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Medical rant ahead because the “headache department” at my hospital is an absolute headache, an essay by Me
So I’ve been getting injections for daily migraines, and they’ve had some not great side effects:
godawful neuropathy/sensory issues.  If I wear certain pieces of clothing/come into contact with certain fabrics, it feels like my body is on fire/itching/just generally painful (and sometimes it even occurs when I’m not wearing anything, so that’s fun).  I’ve experienced this before because of my fibromyalgia, but never this frequently (it’s daily) and never at this severity (it’s absolutely intolerable, I feel like I need to peel off my skin).  So, understandably, my wardrobe has been dramatically reduced because most of my clothes (including all of my socks, except fuzzy bedtime socks, which is A Look™ in public lol) are having this effect.  One way it’s impacting me is that I can’t wear any gloves, and it’s about to be winter which means it’s hella cold out already, and my hands lose a lot of mobility in the cold so I use gloves at warmer temperatures than most people (yay fibromyalgia).  I’ve also become sensitive to my sheets/towels/blankets so that’s fun and not inconvenient at all *sarcasm*
I’ve also had a completely nonexistent libido.  Which, like, okay theoretically isn’t the worst side effect in the world. But (without going into all the details) this is very unusual for me -- I’ve literally never lost my sex drive no matter how stressed/depressed I’ve been, and only one oral birth control has ever even dampened my libido.  I’ve never had it be nonexistent.  Ever since I went through puberty, it’s been sky high and super distracting (e.g. an orgasm away keeps the distraction at bay).  So needless to say, I’m not feeling like myself at all, because I’ve known and dealt with my high-libido self since I was in 5th grade.  At first I thought this was due to a recent breakup, but it’s persisted way longer than I would have expected and at a severity that I’ve never experienced from any kind of stressful live event ever.  So it seems likely to be caused by the injections because A) the timeline matches up really well and B) it would be super unusual for my birth control to out of the blue randomly cause these symptoms, since I’ve been on this one for about a year and a half now and have never experienced this side effect.
I also get these weird stomach cramps that are worst during the first week after I get the injection, so I know it’s definitely connected.  I probably wouldn’t mind if that were the only issue with the injections, because I could probably just suck it up and deal.
although the injections have reduced the severity of my daily migraines, the beneficial effects have worn off increasingly sooner with each dose.  After only a handful of injections, this current dose lasted only two weeks before I was back to my baseline.  So it’s not like it’s eliminating my migraines, and now it’s not even working as long as it should.
SO.  I did the logical thing and messaged my neurologist explaining all of the above, with some more detail here and there.  And her response to me was:
the pain/sensory stuff if probably just an allergic reaction. (That was literally the extent of her response on this.  Just one single sentence.  Which is concerning for a number of reasons, the foremost being that if this were indeed an allergic reaction, shouldn’t you be telling your patient how to manage it?! Like “hey take some benadryl” or “stop the injections immediately” but apparently the welfare of her patients isn’t a concern to her I guess?)
the decreased sex drive isn’t related
GI issues aren’t uncommon
Let’s maybe schedule an appointment to talk about whether or not you should continue these injections
I was a little peeved because I felt like she’d just brushed off my concerns (she didn’t even address the fact that my quality of life was being compromised but nbd I guess), and I felt like she wasn’t listening to me.  But I figured she was just busy and wanted to get me an answer sooner, even if it was brusque.  So this was my response:
The sensory stuff could definitely be an allergic reaction, but it seems more likely to be an amplified version of what I was already experiencing with my fibromyalgia considering that I literally already experience that symptom.  Regardless, it’s causing an unsustainable way of life, so this needs to change @soon because I’m starting to get desperate, and I’m usually a pretty patient person about crappy side effects
Hi hello so I spoke on the phone with my Ob/Gyn, and based on my medical history and the evidence at hand (e.g. the timeline), we believe that this nonexistent libido is most likely caused by the injection.  Just to give you an update.
(stopped talking about it because meh)
So I got a text reminder asking me to confirm the shipment of my next injection.  Should I cancel it?  Or should I stay on it until my next appointment?
And, kids, this is where fit hit the shan, let me tell you.  Because her response.  God, I can’t.  The audacity.  This is what she decided was an appropriate response for a CARE provider to give:
(NO acknowledgement about the quality of life/issues caused by the sensory issues.  No compassion at all)
DIRECT QUOTE: “there is no evidence in all the studies that have been done, [sic] that shows [injection name] causes decreased libido”
(skipping the GI issues again)
Are the injections helping your migraines? (I LITERALLY ANSWERED THAT IN THE FIRST MESSAGE) Because my recommendation is to stay on them until our appointment in January, and at that time we can see if a change in medications would be beneficial.
There was a point in my life where a physician’s blatant disregard of my concerns would’ve hurt, but I’m apparently past that point.  I’m just angry. Like what do you mean, “IF a change in medications would beneficial”?!  Did you not read all the ways that this is impacting me?  Did you not read the part where I need something to change soon because this neuropathic pain is making me lose my mind?  Also, where the FORK is your compassion??  A patient is having really crappy side effects, and your best answer is “see you in January”?  REALLY?!  I would honestly cry if I weren’t so mad.
Also WTF was with “there’s no evidence about” your symptom that you’ve report.  SO passive aggressive wtf.  Like bitch do you really think my body gives a flying fuck about whether or not this symptom has been “established” as an Official Symptom of this (relatively new, btw) medication?  Because the last time I checked, my body does whatever it damn well pleases and doesn’t read the literature on what it’s “supposed” to do.  I’ve had side effects from medications that less than 1% of patients on those medications experience -- and if you actually bothered to read my patient file, MAYBE YOU WOULD HAVE REALIZED THAT.  Also, chronically ill bodies are often complicated??  That’s not a surprise to anyone, especially for illnesses that we don’t know a lot about, like fibromyalgia, which I have???  And NEWSFLASH EINSTEIN, individuals are *gasp* individual and - guess what - can have individual reactions to things!  What a WILD concept!  It’s almost like everyone has a unique genetic sequence.  OH WAIT.
And what really gets my goat is the fact that this is the first time she’s just blatantly ignored me/my patient history/my concerns.  At the very first visit, I told her that I had chronic fatigue.  We moved on to other topics and didn’t talk about the fatigue again.  But what did I see in the after-visit notes?  She literally wrote “fatigue appears to be from [Medication X].”  Well guess what JACKASS.  If you had BOTHERED to ask me if that were true/if I’d noticed a connection, I would’ve said absolutely no way in hell, because I started Medication X in May and I’ve been experiencing this bone-tired fatigue for YEARS (yes, years plural).  But guess what, even if you didn’t ask me that, you could’ve easily seen it in my patient profile!!  But apparently you’re an all-knowing God who is Always Right All the Time so who needs to ask patients questions or check patient histories!!
I cannot stand doctors with God complexes.  I have 0% tolerance for that.  I can’t handle these doctors who think that their MD somehow makes them Better Than You, and obviously they’re always the one who is correct, not you, because they’re the one with the degree so obviously your lived experiences are Just Plain Wrong.
If you are THAT arrogant and THAT uncompassioante (not a word but whatever), you should NOT be in a position where you’re dealing with patients’ wellbeing.  That’s not okay.  But of course, as long as we live in a society that sees becoming a doctor as prestigious/a money-maker, there are going to keep being doctors like this.  And I wish someone would just take them down a notch, because, dear god, would it kill them to actually listen to and take care of their patients???
Anywho.  That was LONG.
I hope to god no one read this entire thing, because if so, I apologize for that experience but also wow that’s serious dedication to this post (idk if I’d even read this whole thing lol).  I just needed to rant this entire thing and this is apparently my virtual diary.  And also having this all written down is going to be helpful for when my memory (inevitably) fails to remember all of these details
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My S/P Hysterectomy: The Legend
CW Long Post - It’s worth it, I promise
Gather round my friends for I’m going to tell you a story. Oh! What a journey it was, what a glorious and befuddling day it was. For it was rightfully filled with exuberant joy and ghastly panic. This is the legend of my Salpingo-Oophorectomy Hysterectomy. Yes. A legend. I’m literally gonna be famous.
Monday, 6am
I get off work. My last day before I take off two and a half glorious weeks. I won’t have to see my shitty coworkers, the shitty employees, nor the horrendous conditions of our office. I’m fucking stoked.
Monday, 7pm
My friend Nikki arrives to my apartment, she gladly has sacrificed her time to drive me to and from the hospital. Not to mention the extra unplanned duties, but heed my dear reader for that tale is soon to come.
Tuesday, 2am
After dinner and my subsequent NPO period, and about 5 hours of working on art, I get my final shower before surgery using that special ass pink soap. IT WAS FUCKING NEON PINK. It smelled nice though, I want more of it to be honest. It got me clean as fuck.
Tuesday, 5am
We arrive at the hospital:
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Oh the naivete... I did not expect what so ever the events that were to pursue this happy go lucky picture.
Tuesday, 7am
Nurse: *puts IV in*
Me: *trying not to move as I start screaming*
Nikki: YES SCREAM LIKE IRON BULL!!
Tuesday, 7:15am
They roll me out of the pre-surgery room and into the OR. I see all the doctors I had previously met, I blearily wave hello as I am transferred onto the OR table. I see Dr. Locke preparing all her instruments.
Tuesday, ????
I wake up...
Me: *heart monitor beeping rapidly*
Nikki: Do you want your Hancock pillow?
Me: I can’t feel my arms... I can’t... I can’t move my arms!!
Everyone: Uhhhhhh *starts panicking*
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Tuesday, Late Afternoon
After a literal constant stream of neurologists and neurosurgeons and every nurse known to man is streaming in and out of the curtain surrounding me, we finally decide to keep me overnight. I was supposed to go home by now, but apparently waking up from surgery saying “I can’t feel my arms” kinda sends everyone into a panic.
I start crying and screaming, the pain is so bad, a 20 on the pain scale. I’m given Oxycontin and a bunch of other pain meds. FYI Oxy is the devil and I never want it near me ever again. It didn’t help the pain, it just knocked me out and I felt like I had the flu times 50.
Eventually I calm down. Sort of. I am FINALLY transferred to a single room, where I am the only patient and there’s a couch/bed for Nikki to use.
Tuesday, 8pm or something
I FINALLY get into radiology and I’m given an MRI of the cervical part of my spine. This is basically your neck, and also where most of the nerves in your shoulders/arms come from. Turns out I have severe stenosis of these nerves AND a herniated disc AND compression in two of my vertebrae. So there’s like the reason behind half of my chronic pain which my previous doctors never took seriously.
After another constant stream of Neuro doctors, a few diagnosis have come to light. Ranging from just general compression of nerves to an auto immune disorder.
BUT IT DOESN’T STOP THERE!! The best is yet to come.
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Tuesday, ????
I’m finally off NPO and I can fucking eat and drink. Silvanus bless this water because shit it was fucking delicious as fuck.
Nikki and I are talking and she says, “So they found a lot of endometriosis and a giant fibroid.”
HOLD ON.
A WHAT.
Wednesday... maybe????
I sleep every 2 hours like clockwork to take my meds when the nurse comes in. I’m still in a 15-20 on the pain scale in my arms. I can barely do anything for myself. I can barely feed myself because I can’t fucking move my arms enough.
Wednesday, 3pm I guess??
Repeat the stream of neurologists again and a bunch of sticking me with things to test my nerves (it hurts you fucker).
I’m doped up enough on pain killers and Nikki drives me home. We go to the grocery to get last minute items I need during my recovery since I won’t be driving anytime soon. I barely make it through the trip because my arms hurt, but luckily enough I was able to use the rascal cart to get around since I was still heavily medicated and didn’t wanna fall in the store and make things worse.
Nikki goes home.
Wednesday - Friday
I spend the next several days in so much pain I can barely move. Medicating every 3 hours was making me sick. It wasn’t helping. I couldn’t sleep. My arms and shoulders hurt so bad I was screaming. I emailed all my doctors asking what we should do next. I’m prescribed a cortical-steroid medication specifically to target nerve pain. But I can’t fucking pick it up from the pharmacy because spoiler alert... I CAN’T FUCKING DRIVE OR MOVE MY ARMS. Luckily I had another local friend who picked it up for me, bless his heart.
This new prescription brought the pain down A LOT. Like it brought me from a 15 down to a 5 on the best of times. But eventually I ran out of this medication and had no refills... But this is where my OBGYN saw me for my 2 week follow  up.
Monday, June 10th
I have my 2 week follow up with Dr. Locke. We discuss my recovery re: hysterectomy but also I bring up my arm pain.
Lords bless this woman because even though she has no specialty in pain or neurology, she has been instrumental in getting all my follow up appointments and nerve testing and MRI’s done in an extremely timely manner. She put pressure on other departments to get me seen ASAP because this was such a severe and urgent problem that had arisen so abruptly.
So after she examines my incisions, we discuss the findings. Now. This is where it gets good. If you held on this long... fucking buckle up kids we’re going for another round.
Dr. Locke: So I got your pathology results back...
Me: Hold on... my WHAT.
Pathology = cancer testing etc yada yada
Dr. Locke: Oh so we tested the growth we found. It’s non cancerous.
Me: Yeah the fibroid right.
Dr. Lock: It wasn’t a fibroid...
Me: Wait... WHAT.
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Dr. Locke: It was a benign adenomatoid tumor.
Me:
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BUT THAT’S NOT EVEN THE BEST PART FRIEND.
You see... an adenomatoid tumor is a special kind of tumor. A very interesting conundrum for someone in my condition. Very interesting indeed...
By definition an adenomatoid tumor is:
Adenomatoid tumors are responsible for 30% of all paratesticular masses. These are usually asymptomatic, slow growing masses. They are benign tumors comprising of cords and tubules of cuboidal to columnar cells with vacuolated cytoplasm and fibrous stroma.
US National Library of Medicine, 2009
Hold on... paraTESTICULAR mass???? So like... THE TESTICLES???? Of which I have none???? LMFAO WHAT THE FUCK!?
Yeah so basically my OBGYN (also my surgeon) found a fucking TUMOR INSIDE MY BODY that is 95% of the time FOUND ONLY IN CIS MALES?!
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In Conclusion
So not only did I wake up from surgery with a now potentially diagnosed auto immune disorder I never knew I had... BUT APPARENTLY I HAD A TUMOR INSIDE ME THE WHOLE FUCKING TIME.
Luckily it was benign but HOLY SHIT.
In the end Dr. Locke asked for my consent to publish my de-identified (basically name redacted) story + history into medical journals. Basically I’m gonna be famous now apparently.
She’s discussed with other surgeons in the hospital, talked with other colleagues who deal with trans patients and this has NEVER happened to anyone she can determine.
Monday, Afternoon
I was sent home from the appointment with Gabapentin, another nerve medication. I’ve been taking that in addition to high strength Tylenol, Cyclobenzaprine (muscle relaxer), and Diclofenac (high strength NSAID). These meds have been instrumental in my recovery.
I’m back into my regular working schedule, and depending on how I move my arms, the pain comes back full force. Strength is still minimal and I have to lift even tiny things with both arms. Reaching is difficult still but I’m making progress. My next neuro appointments are in July along with a 6 week follow up with Dr. Locke. We will assess my progress during those days.
But that is my story in how I went from a normal trans dude... to a trans dude with a strange tumor and a potential auto immune disorder!!
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Papers of Homelessness - Chapter 43
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(This banner had been made by the awesome and amazing artist @benteja​​​. i am so honored that she had drawn this banner for this story. please go and show her all the love in the world that she deserves!!! \[^o^]/)
BEFORE | NEXT
a/n: i’m so sorry for taking this long to post a new chapter of poh. you guys know what happened, but still, i’m sorry.
this chapter I dedicated to thane’s bottom squishes... well, I guess mile would appreciate the dedication as well XD *I kind of got dared by him to do that XD*
The taxi came and you were forced to enter it despite not wanting to go to the hospital. Frisk decided to come with you and Grillby, letting you hold onto her while she herself clutched at your back. You didn't mind having her close, your fists on her hoodie proof enough that you needed her presence next to you.
You had waited in the waiting room for an undistinguishable amount of time. Grillby had put himself to be in charge of getting you seen by a doctor, having all of your medical records and being your boss. You just wanted to go home, your head pounded and your bile left a vile taste in your mouth and you wanted to drink something to rid you of it. And since you weren’t getting up, someone had to get it for you.
But not Frisk, she had to stay here.
She held you closer and you moved your hand to hold hers. You probably looked silly, like a big baby. You felt like such a failure. Like some idiot.
"Chara… you're not a idiot… it's okay…"
Did you say that out loud?
"No. Just… had a guess."
You snorted. That's so like Frisk. You inhaled deeply, her hair tickling your nose. She rested her head on yours, her breathing growing deeper. She was falling sleep.
"…Shouldn't you go to sleep at Grillbz'?"
"Comfortable…"
"Chara!"
Mom?
You forced your head up and slowly raised your eyes, startling when your mother sat down next down, pulling off her sunglasses and folding her umbrella. She was so big and different to the woman in your memory.
Your mother was pale, so pale and so tall.
Your biological mother was much darker… and shorter. Your child-self saw her as much bigger than she probably was.
"Mom…" You muttered, feeling as if you were rising from a very heavy liquid keeping you down. You were seized by your mother and tucked into her arms.
You relaxed and clutched onto her pink blouse.
"My child. My baby. I heard what happened? Are you okay? How are you feeling?" She took a deep breath and shifted a bit. "Thank you for looking out for him, Frisk."
"No need… was worried…" Frisk squeezed your hand. "Is Chara alright?"
"…I hope so… I would need to hear what happened from him. Chara, my baby, do you feel well enough to tell me?"
You shook your head. You could barely think, much less discuss your memories and interrogate your mother about your early life. You wanted to. You had a hunch that she knew something.
But that could wait.
No time. Dodge back or dive in.
Fatal.
Dive to the right. Pierced from the left. Roll on the floor.
Strangely no pain.
Adrenaline perhaps.
Seize knife. It's broken.
No matter.
Slash.
A loud thud.
"And Player had bested their opponent against all odds!"
Blood.
So much blood.
Pain exploding in side.
"Not good enough, Player."
"Chara?"
You were snapped out of the vision and groaned and your stomach rolled, too empty to bring anything up so you only tasted burning spit that you forcibly swallowed. You were humiliated enough to throw up again.
"Yes?" You managed to murmur, head killing you.
You were fighting someone again.
Did you forget your past because you fought a lot of people?
But you were known for your blood thirst and your urge to fight. So why in the past you weren't? It seemed forced. Like you were putting up a show.
A deadly one.
And who was that Void guy? He seemed like your boss or something… the reason you were fighting?
"The nurse is here to take your vitals." Mom rubbed your back. "Can you get up for me?"
You took a moment but nodded, pushing yourself from her soothing embrace and slowly stood up, holding your head and clutching onto Grillby's hand when you stumbled, using it as a crutch as you went into the nurse room.
Your vitals were a bit off, but not fatal. 112/72. Pulse 86. A bit off than usual, but probably due to the adrenaline and panic. Oxygen levels 99. Normal. Your temperature was also normal – 36.4 C. A bit low than what you thought that it would be, but it's probably from the AC going strongly in the waiting room.
So nothing from this, huh? You weren't sick with a virus or something. A concussion? But you didn't hit your head.
It has to do with your visions.
In the meanwhile, you were given a warm herbal tea and was told to wait to the doctor, so back to the waiting room.
Frisk's hand was back in yours. She was covering herself in her hoodie again. You figured that uncovering her eyes in public places other than the diner would have to use some work. You rubbed the back of her palm with your thumb. She covered your hand with her other palm, raising the bunched hands to her chest when she rested her chin on them. You felt the tips of your ears burning a bit and you pushed back an urge to glare at your mother when you heard her soft sniggering.
At least it distracted you a bit.
After a while, you heard your mother asked Grillby what the time was.
"I… don't know…" Then you saw Grillby look around and point at the wall.
Your mother looked up. "Oh. I’m glad that they have something to tell the time now. Last time I have been here, they had nothing so only because my… ex-husband had his watch on him that we knew what the time was.”
"…Important why?"
"I'm just a bit worried so I'm rambling, excuse me," Your mother sounded flustered. It was quiet for a short while and then she begun again, unable probably to handle the silence. "I remember when Asriel was sick and Chara was confused as to why his little brother was so red and wouldn't leave the bed. He actually thought he was dying or something," She chuckled sheepishly.
"Stupid Azy, get up already."
Poke forehead. Warm. Too warm. Bad.
"Get up. You need to cool off."
"Mmm…." A hand swatting yours. You grumble and flick the pale blonde hair. A sneeze. "'ve me alone, asshole…"
"Mom doesn't like swearing, Stupid Azy."
A muffled curse. "don' care! You are worse!"
"If I'm worse, you needed to be out of this bed like yesterday." Taunt. Stop the bad feeling. Need to cool Asriel.
Something was wrong with Asriel.
"Sick, Chara… 'm allowed…"
Sick?
"Are you dying or something?"
"Yes."
Panic. Grab him. Run to mom. Save him.
"Chara! My bed!"
"Saving you, stupid Azy!"
"I'm sick! Not dead! MOM!"
"Never been sick before?" Frisk asked in confusion while you were beet red from embarrassment.
Mom shook her head amusingly, eyes faraway. "He had gotten sick once or twice, but he was quite oblivious to a lot of things when we adopted him. He didn't even know what a house was."
Tall. Square.
Stone.
Glass?
Wooden door.
Tilt head. Confusion.
"That's our house, Chara!"
Look at small child. Blink.
"…Hou…se?"
Frantic nodding.
Too much movement.
Smack.
"Ow! Don't hit me, Chara!"
"…don't… move… so much."
"Kids."
"Chara is hitting me!"
"Chara, don't hit your brother."
Confusion. Small child doesn't mind.
Return gaze to the stone square… house?
"Mom, I am not an idiot or something…" You grumbled, wanting to stand up and leave the place. Your mother was worse than your brother when it came to humiliating you in public.
Frisk snorted and you finally looked up to glare at her. Her covered face didn't show her eyes from your position but her mouth was curled slightly up. You freed your hand from her hold and flicked her nose. She jolted and held her nose, looking at you.
"You are oblivious to a lot of things as well, so not that much better than me." Frisk scowled and swatted your hand.
"Chara Rovias!" Your name was called and you stood up, feeling a bit better than before and much more coherent as you entered the clinic with Grillby and found the nurse from before. She showed you to a room where a middle-aged woman in doctor garbs was preparing the towel paper over the bed.
"Are you Chara Rovias?" She asked sternly, a heavy Russian accent in her voice. You nodded and sat on the bed as requested. She looked over a clipboard with several papers. "You do have a history of sudden headaches and dizziness, which your amnesia was apparently the cause. You went to a psychologist for close to eight years, I see. A few quick questions."
She took out a triangle head flashlight and asked you to stare at the light as she shined it into your right eye. You obeyed and moments later she switched to your left. She hummed and withdrew after a moment. "Did you see any memories that you don't recall?"
You nodded. She took out her statoscope and asked you to breathe deeply as she pressed the cold metal to your chest and back.
"Are they always followed with headaches?" A nod. “Black spots in vision?” A shake of the head. “Dizziness?” A nod but then a shake. "Nausea?" A shake of the head.
"Did they happen on the side?"
"Only the dizziness and nausea... It happened only lately."
"Meaning your reaction to the memories are getting worse?"
A nod. She nodded back and wrote something on her clipboard and sat on her chair, circling to face her computer, one leg over the other. She then begun to type, her long polished pink nails clicking the buttons loudly.
You felt as if each click pierced your head.
"I am going to send you to a neurologist. In the meanwhile, I would recommend you to see a psychiatrist or to go back to your psychologist. I'm not an expert, but you might show those symptoms to your memory finally returning because of a trauma involving your loss of memory."
She clicked on her mouse and bend down to the printer and after a moment of loud noise from the machine, she procured a few papers and gave them to the silently standing redhead. "Make sure he's not stressed too much and monitor him. It could get worse as he remembers more."
"Thank… you…" Grillby nodded.
She returned to the computer, ignoring his words and pointed to the door. "You will get released in the counter. Have a good day."
Having a bit of a whiplash, you exited the room and returned to the counter and a teenager grumbled as she printed your release papers. Apparently Grillby already paid for you so no holding back needed.
"Have a good day," She said in monotone, swirling her chair and saying something to the other secretaries. She got laughter in reply.
You were dragged back to the waiting room, where Frisk and your mother were talking to each other. Mom saw you and stood up, worried. "So, what did the doctor say?"
"Neurologist… and psychiatrist," Grillby answered.
Mom sighed. "I'll have to call Dr. Nil again."
"Can we go in the meanwhile? People are staring…" You grumbled, feeling a bit too exposed with so many people sitting around and probably were staring at you. Your shoulders hunched as you dragged Frisk out, trusting your mother and your boss to follow.
"How are you feeling?" Frisk asked once in the elevator, looking in concern at you.
"Better… but I really am getting tired of those stupid headaches and visions."
"…Tell me what you see?"
You looked at her then at the floor, resting your head on the cool metal for a moment before the elevator dinged and you exited, heading to the exit of the building. You planned on waiting there for your mother and boss since you had no idea how your mother arrived. You might need to take a taxi home.
You wondered if frisk would agree to stay over.
"Chara?"
"…I fought a lot… but I wasn't happy about it…" You said after a moment. She kept quiet, not wanting to cut your thoughts. You were thankful for it. "A guy was there… Void… he was training me? I think. He was never happy with anything I did. I was terrified of him."
"Hurt you?"
"Not out of training. My fights hurt me enough. There were other kids there and apparently one kid was sure I would protect him or something…"
"You protect me."
You snorted. "You don't need my protection."
Frisk shook her head. "You protected me… when I was sick and alone… you saved me several times."
You blushed. "You just want to make me feel like a man, aren't you?"
Frisk seemed to be confused at your remark. "You are a man."
You chuckled, shaking your head. "Of course. I meant a manly man. I lack the proper muscles and I am too thin to be strong. I am not a manly man, simply faster."
"…Super power," Frisk said after a heartbeat. You stared at her, lost. She snorted. "Father told me… about superheroes… was one who only had speed, but he was so fast… he could turn back time… maybe it is you?" She pulled back the hood, piercing eyes glowing golden in the street lights, the passing cars reflecting in them and creating a halo around her dark, dark hair.
You gazed at her, awed.
"Wrong?" She said after a moment, pursing her lips. You huffed, raising your fingers and brushing back her hair. She closed her eyes and nuzzled your hand, then interlaced her fingers with yours and lowered it so both hands were resting on the cool stone you were sitting on. "You're strong… I prefer you like that… I like you like that…"
You looked away, covering your face with your free hand, too flustered to answer. You heard snorting and Frisk scooted closer, resting against your side and hugging your arm. "Nice… warm…"
"Frisk, I swear to god if you don't stop I'll kick you," You interrupted her, not able to admit that her compliments were making you giddy. She chuckled and shrugged.
After a long moment of silence you calmed down and looked at Frisk again. "…Want to stay over the night? My house is closer."
Frisk considered it for a moment and then shrugged. "Sure."
"Awesome…" You mumbled lamely.
Maybe you'll get to see Frisk in nightwear?
You slapped your forehead.
Frisk snorted.
"I hate you."
Snorting.
Where were Mom and Grillby?
You barely noticed how your headaches cleared and your stomach settled.
NEXT
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travelingtheusa · 4 years
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NEW YORK - I had saved my NY postings so here they are.  The rest are lost.
29 Aug 2020 (Sat) – We went to church today to attend a memorial service for June Wertz, a friend of ours.  Her husband, Bob, invited us to join their travel club some years ago. One of the members of their club had passed away just before the small group was going to camp out at Wildwood State Park.  They invited us to take his camping spot.  During the 8-10 years we camped with them, it was always on Long Island. The members were all up in years and didn’t go off-Island to camp.  It was a fun group and I wish we could have known them in their younger, traveling days. At any rate, we certainly enjoyed the time we spent with Bob & June and the rest of them.  
     Miranda and Kenny had a serious incident yesterday.  They were at KFC when they noticed smoke coming from the engine. They popped the hood, looked around, and opened the radiator cap.  Both of them were scalded, Kenny pretty badly.  They are monitoring his condition to determine whether his burns are bad enough to seek medical help.
 28 Aug 2020 (Fri) – I drove to Ronkonkoma to visit with my cousin, Claude, today.  He has been experiencing medical issues for a while now.  He has gone from 220 lbs. to 175 lbs.  He is looking old and sick.  I fear for his well-being.  I visited for about an hour then the nurse came in to see him so I left.
     Paul spent the day repairing the steps to the back deck.  He poured some concrete at the base a few days ago and had Caiden put his name, date, and footprint in it.  
 27 Aug 2020 (Thu) – I drove out to Southampton today.  It was almost an hour and a half drive.  When I arrived for my 10:30 a.m. appointment, the receptionist told me I was scheduled for 11:30 a.m.  The dentist didn’t get me in until almost 12 noon.  I was seeing him for a consultation.  He is an endodontist who specializes in root canals and oral surgery. He didn’t see anything that needs immediate attention.  Furthermore, he said that he conforms to the recommendations of the American Dental Association and doesn’t believe that metal in the mouth or root canals are inherently bad.  He suggested that I leave everything as it is unless I am in pain.  It was a disappointing consult.
      I stopped at CVS to pick up my prescriptions from the dermatologist, the neurologist to get copies of the test results for my records, and at Shop Rite for some groceries.  I got home in time to put everything away and turn around to make my 4:00 p.m. appointment for physical therapy.  That was also a somewhat disappointing experience.  I was brought in, asked a bunch of questions by someone who said she was a physical therapist, and advised that I would get some exercises to do. Today’s appointment was just heat and stimulation.  An aide put the electrodes on my foot and wrapped it in a hot towel.  She said the therapist would be in to turn on the stim. After 15 minutes, I flagged down a passing therapist to see if she could find the gal that was supposed to turn my stim on.  After 5 minutes, she came in and said she thought the aide would turn it on.  They seemed very disorganized and uncommunicative.   I am scheduled for physical therapy 3 days next week.  We’ll see how that goes.
     When I came out of the office, I crossed the street to pick up a few things at Best Market that I didn’t get at ShopRite.  It was a full day of running around.  Whew!
 26 Aug 2020 (Wed) – I went to the dermatologist this morning.  The oncologist told me that the chemo can cause skin cancer and to get a skin exam once a year.  So, here I am at my one-year check.  The exam went well and I was given a clean bill of health.
     At 1:50 p.m. I went to see the orthopedist that I was referred to by the podiatrist.  I have an interstitial tear in the Achilles heel fiber, not the tendon.  There are three ways to handle it – by physical therapy, by surgery, or by an experimental program that takes your blood, mixes platelets with it then injects it in the injury site.  Insurance will not cover the cost.  I opted for physical therapy.  He gave me a script and I made an appointment with a nearby therapist.
     We went out for dinner to Texas Roadhouse.  The food was good.  We forgot our leftovers.  That must happen at least half the time we plan to take leftovers home. Aaaarrgh!  
25 Aug 2020 (Tue) – No doctors today!   I ordered dulse flakes from Amazon.  Travis called to ask for help.  He was turned down for a rental because a credit report stated they had been late on their last 8 mortgage payments.  This is incorrect.  I went on the webpage and saw that their payments were on time.  Samantha called Equifax to correct the report but was told they only reported what the mortgage company gave them.  She called the mortgage company and was told Equifax had to correct the record.  A big, fat bureaucratic run around!
    I spent a good part of the day on the phone with the mortgage company trying to get a letter that simply stated that their payments have been on time all year.  The last agent I spoke with told me they are restricted in free-form correspondence because of a contract they have with USAA.  They can only send certain forms.  He did offer to send a transaction record that showed all payments were made.  Unfortunately, it does not say the payments were on time.  
    In the meantime, I was trying to get an appointment with the dentist and getting a refill for Paul for a medication.  I finally landed an appointment with the dentist for Monday and the doctor’s office placed the refill order directly with CVS.  I did get to finish burning one box of records.  Only 5 more to go!
     Travis called later and told me he offered to pay one year’s rent up front and was waiting for the rental agent’s reply.  He’s got a job offer and the new boss said he would look into putting the money up until Travis sold the house.  If he does that, Travis better give this guy 110%.  He doesn’t know Travis from a stranger on the street and is willing to put up $23,000?  We will see.
     Miranda and Kenny went out tonight.  I offered to watch Caiden so they could have a date night out somewhere. It isn't much but I’m sure they haven’t had a chance for private time since this whole COVID-thing started. Kenny’s mother and grandmother are keeping their distance and they have no other childcare set up.  
 24 Aug 2020 (Mon) – We went food shopping this morning.  I did laundry in the house.  At 1:45 p.m., I left for an appointment with the biological dentist in Manhasset.  On the way there, the office called to say the dentist was running late and to come in at 4 p.m.  So I detoured and stopped at Sherry’s Market in Babylon.  I wanted to pick up some barley grass juice powder and dulse flakes. They did not have the dulse.  The clerk said I might find it in Wild by Nature down the road in West Islip.  So I drove down John Street and into the strip mall.  They had dulse granules but no flakes.  Not sure if that was OK, I didn’t buy it.
     Finally, it was time to stop dawdling and drive to the dentist.  I got there at 3:50 p.m. and called the office to let them know I was there.  They told me to come right up.  I didn’t wait 10 minutes (BIG difference from last visit) and was shown into the exam room.  The first dentist, Dr. Golden, popped in while Dr. Blum was reviewing my 3D scan.  They discussed my case and what they recommended I do.  Then they sent the money gal in.  She described the procedure they would use – do a root canal on two teeth and put in ceramic posts with a bridge.  Giving me a discount on the bridge, it would only cost $12,000.  I could buy a frickin’ car for that much money!!!  I told her I would think about it and left.
     I called my sister to see if I could get in to see her biological dentist.  She gave me his number but the office was closed. I’ll have to call them tomorrow.
 23 Aug 2020 (Sun) – We went to church this morning.  Everyone is still wearing masks and the pews are roped off to keep people distanced from one another.  After church, we gathered up most of the stuff we have been collecting for the yard sale and brought it back to the church.  They are trying to have an outdoor thrift shop sale on the front lawn. We don’t know how that’s going to work. It was all clothes they had outside and anyone shopping would lift the clothes to look at them.  Now they’ve been touched.  What next?
     At 3 p.m. we drove to our friend’s house, Bob.  He used to be my brother’s father-in-law (before they got divorced). Bob managed an A&P store in the day and he catered many parties.  Any time he’s making a meal, it’s worth going.  He’s a great cook.  He made ribs, roast potatoes, and corn on the cob.  We had a very nice visit.
 22 Aug 2020 (Sat) – We gathered up Caiden and drove to my sister’s house. Susan is celebrating her 65th birthday today.  As expected, Caiden never wanted to get out of the pool.  Our brothers, Dennis and Chris, also came to the party.  We gave Denis some old baseball cards we found in the back room during our clearing out maneuvers.  He seemed to be pleased with the gift (his birthday is next week).  It was a fun day.
 21 Aug 2020 (Fri) – We went to the Oconee Diner for lunch then took a ride to Target to get a few things.  We picked up some clothes for Caiden and ourselves.  After we returned home, we spent the rest of the day cleaning out the back room.  I burned more military records.   Thirty-one years of military history – GONE!  Up in smoke!  I was surprised to see that I had every pay record I ever got during my service.  
 20 Aug 2020 (Thu) – It was a confusing day at the cardiologist. First, Paul went to the office for a 9 a.m. appointment only to be turned away.  They said he had an appointment at 3:45 and I had one at 2:30 p.m. When he got home and told me, I stated that the office had called yesterday and confirmed the 9 a.m. time. I also had my appointment time entered in my calendar as 2:15 p.m.  Just as we were perplexing over these times, the doctor’s office called to say he was called to the hospital and they had to reschedule our appointments.  We managed to get us in at 11:30 and 11:45 respectively. That ensured we got in together.
     The doctor was prompt and entertaining.  He checked us both over.  Reviewed our bloodwork and tests and declared us in good health.  My cholesterol is a little elevated so he wants to see me back in 3 months.  If the numbers are still up, he will put me on a drug (he thinks).
     We drove over to Travis & Sam’s tonight for dinner.  Turned out we had to buy the dinner (surprise!).  We stopped at Chili’s and picked up 6 meals then drove to Trap’s where we enjoyed our dinner together.  Travis got a job offer at a construction company in North Carolina. They will also help them to get into a rental home.  It sounds very good.
19 Aug 2020 (Wed) – I went to a biological dentist today to get an assessment of all the dental work in my mouth.  I have been reading several books about alternative medicine.  One book by Dr. Simon Yu states that disease is the result of 4 causes.  The three top causes are dental problems, heavy metals, and parasites.  It was 2 hours before the dentist came in to see me and we spent an hour talking about the research and alternatives.  She sent me to get a 3D x-ray to see if there are any infections in my mouth.  Although there was no “pathology,” she did identify 4 incomplete root canals.  She recommended I see the surgeon in the office. I made an appointment for Monday.
     On the way home, I stopped by Sherry’s Market, a health food store in Babylon. It was expensive!
 18 Aug 2020 (Tue) – I went to the neurologist this morning to get all the electrodes disconnected.  I tried to schedule a follow up visit with the doctor but his earliest appointment is October.  How do you discuss what they found with all these tests?  
     I drove to East Islip to the podiatrist’s office to pick up a copy of the MRI report stating I have an interstitial tear in my right foot.  The receptionist offered to call the radiology office to see if I could get a copy of the MRI pictures.  Then I walked over to their office and got the disk.
     Paul spent the day working around the yard.  I spent the day burning files.  I have so many military files to burn.  How in the world did I get so many in my possession???
 17 Aug 2020 (Mon) – I went to the neurologist this morning and was wired up for a 24-hour EEG.  They attached 23 electrodes to my head and 3 to my chest.  I have to wear a machine to register brain activity for 24 hours. All this just to reassure Paul that I am OK and can go hiking in the woods again.
     When I got home, Paul went food shopping.  I was NOT going out with all the wires hanging off my head.  When he got back, we had lunch, then went to work on getting rid of old files and boxes.  I have tons of old military books and material that has to be burned.  It can’t just be thrown in the garbage.  I sat in front of the fire pit for 2 hours and only got through 1 box.  I have 5 more to go.  
     Ford called to say they replaced the fuel pump on the truck and everything seems to be alright.  I took the rental car, drove Paul to Sayville Ford to drop him off, drove to Islip Airport to drop off the rental car where Paul picked me up and we drove back home.
 16 Aug 2020 (Sun) – We borrowed Kenny’s truck and drove to church this morning. It rained all day.  We spent most of the day inside watching TV or working on the computer.
 15 Aug 2020 (Sat) – Spent the day working around the property.  Kenny went to work at 4 and I went into the house to watch Caiden.  He came out to the camper and had dinner with us, then we went back inside and I gave him a bath.  We had a pillow fight and played with his transformers.  He finally went to bed at 9 p.m.  I think that is too late for a 6 year old but his parents are night owls and I guess he’s becoming one also.
 14 Aug 2020 (Fri) – The tech from Sayville Ford called and said the diagnostics was telling him the truck needs a fuel pump.  No amount of arguing that the last service station messed something up. We finally authorized the part. Maybe they can get to it on Monday. Ugh.  
     Miranda’s truck was finished at 4 p.m.  Turned out to be the alternator.  I was going to take the rental car since we have no vehicle but I let her take the truck to Philly given the cruddy condition of her truck. We weren’t sure it would make it there and back.  It really is on its last legs.
     We were supposed to ride out to Indian Island to join the Long Islanders for camping this weekend.  Since we don’t have the truck to pull the camper, we will miss the campout.  This was very disappointing.
 13 Aug 2020 (Thu) – Miranda’s car suddenly gave up the ghost today.  It was clicking, wouldn’t start, and all kind of diagnostic warnings were flashing on her dashboard.  She was able to drop it off at the service station.  This is really bad timing because she is preparing to go to Philly this weekend to coordinate a concert for her camp.   We looked around and was able to reserve a rental car just in case the car isn’t back tomorrow.
     Paul and I rode our bicycles to Best Buy this afternoon.  It’s been giving me trouble and there’s some kind of program on there that we didn’t load in but keeps trying to update drivers.  I had them take it off.  They were very understaffed and the tech wasn’t really interested in working with me on anything else.  I had wanted help in getting videos off the computer.  I’ll have to wait until things get back to normal.
     Paul took an Uber to the cardiologist this afternoon for a stress test.  They injected him with something and then put him in an MRI machine.  He said it was quick and easy.
 12 Aug 2020 (Wed) – It was a quiet day all around.  Paul picked up the truck.  Not only was it making the humming noise, but the dashboard was lighting up like a Christmas tree!  Low fuel pressure!  Low engine pressure!  The service station told us they couldn’t find anything wrong and the noise was gone. Boy, were they wrong.  Paul called Sayville Ford and we were able to get it into the service bay today.  Hope they didn’t break the engine.  L
 11 Aug 2020 (Tue) – I went to the radiologist today for an MRI of my right foot. We worked around the property, cleaning out old files and boxes.  Sent out for pizza for dinner.
 10 Aug 2020 (Mon) – Paul brought the truck back to the service station this morning. They kept the truck and dropped him off back at home.  At 1 p.m. I went to the doctor for an echo cardiogram.  I had to borrow Miranda’s car to get there and back.
     We called the service station at 3:30 p.m.  The tech told us that they had to call a friend at Ford to ask about the fuel pump.  The guy told them they had to replace the entire assembly, not just the fuel pump. Paul was annoyed!  I think we will have to make sure in the future that (1) only Ford does the work and, (2) that the mechanic is a certified diesel mechanic. Hopefully, we will get the truck back tomorrow.  They were going to send out for the item, which will cost us over $400.  This is after already being charged $170 to put the fuel pump on before they broke it.
 9 Aug 2020 (Sun) – We went to church this morning.  I think it was the most people we’ve seen there since we came back.  Everyone is still wearing masks and there are seats roped off.  Hand sanitizer stations have been set up around the building.   They announce that the thrift shop will open for 2 hours on Sunday afternoon in an outdoor setting.  That means folks attending the service will be asked to help bring things outside and set up, then take it back downstairs when done.  I hope it works.  The thrift shop is a major revenue source for the church and it has really been hurt with the closure.
     After church, we went to the Clamside Bar & Grill at the East Islip Marina. The waitress was soooooo slow.  Paul ordered Belgian waffles and they came out cold. My food was lukewarm.  He sent his waffles back.  The next service was also cool.  Paul wound up not eating his meal.  It was a disappointing experience and we probably won’t go back there for a while.
 8 Aug 2020 (Sat) – We gathered up Caiden and drove to Sue & Bill’s for the day.  The day started out overcast but the clouds soon cleared away and we had a delightful day in the pool.
 7 Aug 2020 (Fri) – I went to the neurologist this morning.  The first test was a Neurotrax.  It was a cognitive test to see if I’ve had any brain damage from the TGA back in March.  Following that, I had an EEG.  A technician glues 23 nodes to your head and then has you sit in a chair with your eyes closed most of the time.  He flashes a light on your closed eyes, then says “Open Your Eyes” for like 30 seconds then close them again.  Weird.
     Paul has been working hard in the yard, cleaning up after the storm.   The oblivious neighbor did a stupid thing.  A tree in his yard came down into our yard. It was straddling the fence with the root ball in the neighbor’s yard and the tree branches supporting the tree in our yard.  The neighbor brought his chain saw out and cut the tree.  No longer balanced between the tree branches and the root ball, the tree crushed our fence.  
     I went to the podiatrist today to check out the painful lump on my Achilles tendon. The doctor took an x-ray and said I have a bone spur that could be causing the problem.  She also criticized my flip flops, saying I needed more support for my feet.  She gave me some heel inserts to wear in a closed shoe.  She also sent me to the radiologist to get an MRI.  I made an appointment for Tuesday.  
6 Aug 2020 (Thu) – Paul brought the truck to the service station to get it inspected.  When he got back, he complained that he could hear a humming from the fuel pump.  That happened to us once before.  A non-qualified mechanic had tried to mount the fuel pump on the rail and broke it.  Apparently, a certified diesel mechanic needs to do the job.  Paul called and was told to bring the truck back in on Monday.
     We brought Bonnie to the vet at 2 p.m.  The ultrasound shows she has some abnormal liver issues.  The vet wants to do a biopsy but Bonnie has to get a blood test first to see if she has a clotting factor.  If so, then she can have the biopsy.  If not, then we can’t do it.
 5 Aug 2020 (Wed) – I had a check with the nurse at the cardiologist’s office today.  They wanted to check and make sure there were no problems with the loop recorder.  She said I had a bit of a reaction to the medical tape but everything looked OK.  I should just let the tape fall off when it wants.
     After the doctor, I brought some containers to Travis.  He is now in contract on his house and beginning to pack things up.  I brought him 9 containers.  Then I drove to Sayville and met my sister, Susan, and her daughter, Shay, for lunch at Cornucopia.  It is a kind of health food supermarket with a great deli counter where we all ordered lunch.  We then sat outside to enjoy our meal.  Following that, we took a walk along Main Street, looking in the shop windows.  When we came upon an India shop, we went in. Susan & Bill follow the religion of Ashananda and the shop owner had been to one of their meetings out in the Hamptons.  She spoke for a while with the clerks (the shop owner wasn’t there).
     We went over Trap’s tonight to sign the contract for the sale of their house. Since we are listed as co-owners on the house, we have to sign the contract as well.  While there, Trap dug out the chain saw for Paul.
 4 August 2020 (Tue) – Things have been so busy and technology has been so challenging that I have not been able to keep up with the blog.  I have an appointment with Best Buy on the 13th. Hopefully, that will get things back on the road.
    Let’s see. I have been to the cardiologist and had an internal cardiac monitor (ICM) installed in my chest.  It is a device that tracks heart activity and at night, when I am sleeping, it uploads the day’s activities to the doctor’s office. It’s been 5 days and the site still itches like crazy.  Ugh.
    I had to go to the lab and get a COVID test before getting the ICM installed. The nurse stuck a Cutip so far up my nose that my eyes teared.  And I had an earache for the rest of the day.  That dam thing was painful!  I will not do that again.
     We took Caiden to Sue & Bill’s last Wednesday.  Their daughter, Shay, and her boyfriend, Pat, are up from South Carolina. We all swam and munched on delicious vegan foods.  It was fun.
     I went to the doctor’s office to see what is wrong with my heel.  The PA saw me (the doctor was busy).  He thinks I have a cyst on my Achilles tendon and referred me to a podiatrist.
      Miranda was back in Pennsylvania this weekend so we watched Caiden a good part of the time when Kenny wasn’t working.
     We got to visit with Travis & Sam yesterday.  The baby is walking pretty good now.  He’s always so happy.  He immediately lights up when he sees you and waves his little hand hello.  Trap got an offer on the house and we signed the contract with the realtor.  He’s a little freaked out.  They have now signed a contract to sell their house.  They have to be out in a month.  They want to move to South Carolina but neither of them has a job or a place to stay.  In addition, they’re not going to be able to keep as much of the money from the sale of the house that they had counted on.  The realtor gets $16,400 alone!  Wow!
     Today, Paul had an appointment with the dentist.  This was a follow up to checkups we had two weeks ago where the dentist found a cavity.  He went in to day to get it filled.  Afterward, we went to WalMart to pick up a few items.  Later in the day, Tropical Storm Isaias blew through.  Another tree from the neighbor’s yard came down across our fence.  Also, one of our trees came down and landed on the deck.  It just missed the roof and back doors.  This was dejavu!  Same thing happened last year when we were here.  Paul will have to dig out the chain saw.  The entire neighborhood is digging out.  Two trees went down on Saxon Avenue, the next block over, and the road was closed.  Thousands of people were without power.  We lost power on and off all day long but not for very long.  Our neighbor a few doors down had a tree go down and take all his electrical lines with it.  The fire department came and cut up the tree and pulled it out into the road.
 25 July 2020 (Sat) – We went to Nicky’s on the Bay for lunch.  The tables were spaced apart.  Lots of them were out on the deck.  All the wait staff was wearing face masks.  Our waitress was very slow and unsure about herself.  She might have been new.  While we were eating, a waitress came running through the restaurant asking if there was a doctor, an EMT, or a nurse in the place. Apparently, something happened at the marine fuel site out on the deck.  We couldn’t see what happened but an ambulance did roll up.
     The cost of the meal was very high.  It don’t know if it is because Nicky’s is a seasonal place and is trying to make its money during the summer or if they jacked the prices up because they can’t have as many people in the place. Either way, it was over $60 for a wrap and a sandwich.  Ouch!
 24 July 2020 (Fri) – Finally!  A day with no doctors.  Whew!  Paul got up early and took the truck to WalMart to get an oil change.  He said it looks like WalMart is going out of business.  The shelves are all half stocked.  If you stop to think about it, they get most of their products from China. The pandemic has affected shipments worldwide.  In addition, the U.S. is angry with China for keeping the Coronavirus a secret and has instituted sanctions against them.  WalMart must really be hurting.
     After Paul got home, we went to Home Depot to get a container.  One of our two batteries went bad and Paul bought two new ones.  Now he wants a container to put them in to keep the area more organized.  Home Depot didn’t have much of a selection at all. On the way out, we stopped by the tile area and picked out a tile to do a backsplash in the bathroom.  We couldn’t decide, so we picked up three samples to see which we would like best.
     When I was entering the costs into the budget, Paul discovered that WalMart charged him for the oil that he actually provided.  So he got in the truck and drove back to WalMart to get his $12.47 refunded.
     Miranda is teaching in Pennsylvania again this weekend.  They took Caiden into Queens to stay with his grandmother. Kenny borrows his mother’s car so Miranda can take their car.  I will miss Caiden.
 23 July 2020 (Thu) – Today was my visit with the oncologist.  It was so disheartening!  My appointment was at 4:15 p.m.  I checked in then after a brief wait, a tech brought me into an exam room and took my vitals.  Thank goodness; no blood draw.  Then I went upstairs and checked in with the receptionist.  I waited about a half hour before the doctor’s admin assistant came and led me to the exam room. I sat there for another half hour before the nurse came in and went over my case.  He spent a lot of time complaining about patients calling and asking for visits or pain medication when they should be going to their primary care physicians.  Then he asked me who my PCP was.  I felt like it was some kind of criticism.  Was I supposed to be going to a different doctor?
     The nurse left and it was another 20 minutes before the doctor came in wearing a face mask and a full face shield.  He seemed detached and didn’t really hear my complaints.  He said the medication sometimes causes blisters on the palms of the hands and the soles of the feet.  Was I having any of those?  He also said the medication can cause AFIB and that the cardiologist should check me for that.  It seems like every visit to the oncologist results in him telling me something else that can happen with this chemo therapy.  He seemed preoccupied and in a hurry to get out.  I felt like I got the bum’s rush.  I came home and started crying.  Which is kind of stupid because the CT scan shows that I am responding to the medication very well.  All the lymph nodes are continuing to shrink.  So what’s my problem?
 22 July 2020 (Wed) – I went to the Good Sam Sleep Center this morning.  I had to sit in the parking lot and call the office to tell them I was waiting.  They called me when the previous patient was done.  When I walked into the doctor’s office after checking in, he excused himself and began to dictate the results of his visit with the previous patient.  He stated the patient’s name, the issue, and his diagnosis, all in front of me.  Hasn’t he been briefed on this whole patient privacy thing?  I thought that I should probably step out of the room but with the whole COVID thing, they don’t want people wandering around unsupervised.  When he was done, I told him that I haven’t had a good night’s sleep in 15 years.  The cardiologist recommended I do a sleep study because poor sleep can affect heart function and weight.  The doctor said we probably wouldn’t find anything but said he would do the study anyway. How encouraging is that???
 21 July 2020 (Tue) – I went to the eye doctor today.  I arrived at 9:30 a.m.  When I checked in, I found my appointment was for 10:45 a.m.  It looks like I made the appointment while we were in Alabama and my calendar recorded the appointment as central time, not eastern time.  So the clerk sent me to sit out in my car till it was my turn or the doctor became available sooner.  They called me at 9:50 to come in and brought me right to a test station where they blew air into my eye.  Then she took me to an exam room where I sat for over a half hour.  The doctor came in, put drops in my eyes, and said I am developing glaucoma.  Come back in six months.  Then he was gone.  No discussion, no explanation, no anything.  I complained about some eye discharge and irritation so he prescribed an ointment to put in my eye at bedtime but, again, no explanation or discussion of what the problem is.  It was a very annoying visit.  The doctor was very dismissive.
     Paul put together a 3-minute video of upstate New York.  I posted it on You Tube then contacted SMART with the link. They posted it on the website next to the description of our New York caravan.  
     I went in at 4 p.m. to keep an eye on Caiden while Miranda went to the store. Paul is still grousing about yesterday’s argument.  I have to find a way to get him to lighten up.  Ugh.
 20 July 2020 (Mon) – I had a CT Scan with contrast today.  I dropped off a urine sample for Sheba at the vet, then drove to Sloan Kettering Cancer Center.  I checked in at the front desk and asked if my doctor or his nurse was available to see me.  The receptionist said she would contact Dr. Rodriguez and see what he said.  I then went into the imaging area and had the CT scan. That’s such a weird test.  They inject an iodine based solution and it gives a flushed, very warm feeling in the back of the throat and in the crotch. It feels like I wet myself.  The test isn’t very long and I was out of the machine within 10 minutes.
     I returned to the front desk to see about the doctor.  The receptionist said Dr. Rodriguez would change my telehealth appointment for Thursday to an in-person appointment or I could see someone in triage today.  I said I would meet with the doctor on Thursday.
     I got home to find Paul working around the RV.  He was installing a switch for the water pump in the bathroom.  The switch on the main panel stopped working some time ago and Paul installed a switch down in the basement.  That has turned out to be somewhat inconvenient so he moved the switch up into the bathroom.  That should work better for when we have to use the onboard tank for fresh water.
     While we were outside, Paul and Miranda got into a nasty fight.  That was very upsetting for me.  Then we left and went over Travis’ house to help him with some projects.  He has finally gotten an offer for his house and the inspector will be over on Thursday. He wants to clear up a few little things before the inspector arrives.  Paul and Travis worked on repairing a leak in the kitchen sink and on the thermostat for his burner.  I played with the boys then we all enjoyed a meal that Sam prepared.  It was a pleasant evening.
 19 July 2020 (Sun) – We didn’t think Caiden would be able to sit for an hour in church with a mask on so we didn’t go.  At 11:30 a.m. we drove to the Bayside Clam Bar for brunch.  Afterward, we walked along the boardwalk and looked at all the boats in the marina.  There was a dog at one end that the owner let go down on a little spit of sand.  Caiden climbed down and followed the dog around. We took his shoes off so he could step in the water.  The dog was an older black lab and very friendly.  Her name was Sandy.
      After our meal and walk, we returned to the house and I watched Caiden while Paul worked around the house and yard.  Kenny got home at 7:30 p.m.
 18 July 2020 (Sat) – We got Caiden at 10:30 a.m. and then drove to Sue & Bill’s house in the Hamptons for a day of swimming in the pool and barbecuing. Despite the fact that I put sunscreen on Caiden twice, he still burned.  So did I.  His mother will never let me take him to the beach again.  Aaarrgghh!
     After we got back, I stayed with Caiden until his father came home at 10:30 p.m.
 17 July 2020 (Fri) – We both went to the dentist today.  The chairs in the office were taped off to ensure adequate spacing between patients.  It only left 4 chairs to use.  The secretary took our temperature and went through a checklist (like the tech did yesterday).  Then we had our teeth cleaned and xrays taken.  I got an excellent rating; Paul has a cavity and has to come back to get it filled.
     We went over Trap’s to visit.  We picked up dinner at Chili’s and brought it to the house.  Travis was working on painting the counter top in the upstairs bathroom.  They are trying everything they can think of to sell their house.  They’ve had lots of lookers but no buyers.  The real estate market is so hot today, I can’t figure out why the house hasn’t gone.  His in-laws put their house on the market and the first visitor bought the house for $5,000 more than they were asking.  The only stipulation was that they had to be out in 30 days.
     Miranda’s cat was showing some kind of neurological issue today.  It was walking against the side of cabinets like its left side was weak and it couldn’t stand by itself.  Miranda contacted us while at Trap’s and asked about bringing her cat, Liath, to the vet.  We hurried home to help but the vet said it was not life threatening and to wait until Monday to bring her in.  Miranda was concerned because she is leaving tonight for Pennsylvania and will not be back until late Sunday.  I promised to keep an eye on the cat.
 16 July 2020 (Thu) – We both went to the cardiologist today.  I was doing a follow-up to my “incident” in March. Paul went because he has hypertension and should be seen by a cardiologist.
     When we arrived, we were met at the door by a tech who asked us a bunch of questions about where we’ve been and who we’ve been near.  He took our temperature and then let us pass.  We walked in and was processed by a clerk.  Then we were brought back to the exam room.  The PA came in, went over our medical histories, took our blood pressure, and did EKGs on both of us.
     Then the doctor came in.  I liked him instantly.  He is young – in his late 20s/early 30s.  He was upbeat and very friendly, touching elbows as a form of hello.  He thinks I had a TIA and felt the neurologist was wrong to think I had a TGA.  He recommended I get an EEG, an ambulatory EEG, and have a loop recorder inserted in my chest.  He feels it is possible that I have atrial fibrillation (AFib) and the recorder will measure my heartbeat and send messages to the office.  I would wear it for 3 or 4 years!  I said I had to check that one with my oncologist.
      Then it was Paul’s turn.  The doctor referred him for a nuclear stress test.  He also recommended that Paul resume taking the baby aspirin every day (he stopped a year ago because of a medical report that said baby aspirin didn’t help to prevent strokes.  
 15 July 2020 (Wed) – We worked around the RV until 11:30 a.m. then we took Sheba to the vet.  It was over an hour in which the vet’s office displayed confusion and chaos.  First, I called to say we were outside for our appointment.  About 20 minutes later, one of the vets came out to gather information then went inside. Ten minutes later he came out to get Sheba.  Again, the office was not able to get through to my phone and the vet came out to tell me to call them.  I called and spoke with Dr. Thode.  She took blood and gave Sheba shots.  Dr. Thode also said the blood results were back for Bonnie.  She has round worm and a low liver value.  She prescribed medicine for the worms and recommended an ultrasound for the liver.  After waiting 10 minutes, I called the office to see what was happening.  They were just finishing up and would send Sheba out. The vet brought Sheba out, went over the highlights of her exam, and said the office would call to get payment. After another 15 or 20 minutes, I called to make the payment.  The clerk took my card number three times because the machine wasn’t working properly. Then the vet tech came out with the paperwork.  Paul asked about the medicine for Bonnie.  They forgot it so she went back in to get it.  She brought it out but stated they had forgotten to charge us for the medicine so I had to call again to give the credit card number.  They brought the receipt out along with the stuff to get a urine sample from Sheba.  We left but I got a phone call about 10 minutes later saying they forgot to charge us for the bloodwork they did on Sheba so I had to call back again and give the card number again.  What a debacle!
     Late this afternoon, Caiden came knocking on the door.  He came in and played for a while then I made dinner for the three of us. He ate a small part of his meal but seemed to enjoy it.  I brought the left overs into the house for Miranda and Kenny, or to keep and reheat for Caiden tomorrow.
 14 July 2020 (Tue) – I had an appointment with the neurologist this morning. This was the same doctor that found the tumor in my mother’s brain 36 years ago.  He has gotten very personable over the years.  I liked him very much.  He said the incident I experienced in March was most likely Transient Global Amnesia (TGA).  Just to be careful, he recommended three different tests but stated that he doesn’t expect to find anything.  Apparently, a TGA can happen at any time and never happen again.  Or, it can happen again once or multiple times.  If it happens many times then you would have to get checked for seizure activity in the brain.  Luckily, I have not had any problems since that one time.
     I played with Caiden a little tonight.  We didn’t get much time together but it was still fun.  He loves battle sequences.
 13 July 2020 (Mon) – We took Bonnie to the vet this morning.  She needed a refill on her flea and tick medicine. She got a checkup and a couple of shots. It was so weird.  When we arrived, we called the office and were instructed to stay in the truck.  After about 20 minutes, a vet tech came out.  He took down Bonnie’s information and reason for her visit then went back inside. He came back about 10 minutes later and took her inside.  We sat in the car until the doctor called.  We discussed our concerns and what the doctor found and recommended. Five minutes later, the clerk called to get our credit card number for the bill.  A whopping $950!!!  After about another 15 minutes, Bonnie was brought back out to us.  Then we waited ANOTHER 15 minutes for the clerk to bring out medicine and the bill.  What a pain in the butt.  And we will have to do it again with Sheba.
     Kenny was off of work today, so Caiden stayed in the house nursing his sunburn and playing with his parents.  Paul worked around the yard and I did paperwork.
 12 July 2020 (Sun) – We went to church this morning.  They just reopened after holding services digitally on You Tube and FaceBook for months.  There were about 30 people in church.  We had to wear our masks the entire time and still try to maintain 6’ distance from each other.  They didn’t pass the collection plate.  Instead, it sat in the back of the church and the minister asked everyone to drop their donation in the plate when they left.
    After church, Paul and I drove to the Clamside Bar & Grill at the East Islip Marina.  We both enjoyed a salad.  The day was lovely – sunny, but not too hot, with a soft, balmy breeze blowing in off the water.  The sun glittering on the bay was beautiful.
       When we came home, I gathered up Caiden and he and I went to Heckscher State Park. I figured the beach would be closed but we could walk along the shore, throw stones in the water, build sand castles, and wiggle our toes in the water.  Boy, was I surprised to find the beach open, complete with lifeguards. There were many people on the beach and in the water but they still were all keeping a decent distance between each other.  The water was so warm; like a bathtub.  There was lots of wave action and a delightful breeze kept the heat away.  I did not have a bathing suit so I stood on the shore with my feet in the water, getting splashed well up the legs. Caiden went in and had a great time. Unfortunately, I forgot to put sunscreen on him and he got burned.  His mother yelled at me.  
     When we left the beach, I stopped at Carvel and got Caiden some ice cream. The perfect end to a perfect day.
 11 July 2020 (Sat) – Paul worked in the yard most of the day.  I entertained Caiden a good part of the day.  At 4:30 pm, we went over Travis’ house.  We shared a salad and pizza then spent two hours playing with Noah and Hudson.  The baby is on the verge of walking.  He has very good balance.
 10 July 2020 (Fri) – It was an overcast day with rain on and off. Tropical Storm Fay was pummeling the Jersey coast today but we didn’t get it too badly.  Paul and I went shopping at PetCo for pet food and ShopRite for some groceries.  Boy. Was the grocery store crowded! And we forgot to bring our own bags so the cashier charged us for 3 bags.  Glad we didn’t buy a lot.
     Caiden wanted to come into the trailer so badly today but the weather was lousy and I wasn’t going to put Bonnie out.  Caiden came out and we stood outside in the drizzle talking for about an hour.  Later, I went into the house and we played for about 2 hours.
 9 July 2020 (Thu) – We packed up and left Newburgh at 10:45 am.  It took almost 4 hours to drive down to Long Island. We were surprised with all the traffic on the road.  We came through the boroughs and had traffic and construction that caused us to creep along through congested spots.    
      Caiden was so happy to see us!  He ran out and gave me a hug, then ran back to the porch to watch us park the rig in the driveway.  When Paul had the RV positioned well, I had Caiden help finish the set up by pushing buttons to open the slides.  After we were set up, we visited for a bit and watched him swimming in his little pool. After dinner, I took Caiden to Carvel and picked up ice cream for him and Miranda (Kenny was working and Paul and I are on a diet).  We brought it back home and they enjoyed the treat out on the back deck.
 8 July 2020 (Wed) – Just hung around the campground most of the day.  We did run out to fuel the truck and get ready for tomorrow’s move.
 7 July 2020 (Tue) – We visited with the sales manager here at the campground. We had interviewed him last year and reconfirmed the amenities and costs.  The nightly fee actually went down.  He also promised to coordinate a bus tour into New York City for us.  He offered to pick up our order for bagels and juice and even stated he could arrange a catered meal right here in the campground.
     We came back and did laundry then just hung out for the day.
 6 July 2020 (Mon) – We started out for West Point but would up sidetracked to the Historic Huguenot District.  It was two blocks of old stone houses built in the late 1600s/early 1700s by early French settlers.  The visitor’s center was closed and none of the buildings were open.  We walked up and down the street, admiring the architecture from the street.
     We then continued on to the West Point Military Academy.  The visitor’s center was closed, as well as the tour operations office.  There was no one to ask anything of.  The day was a loss in that regard.    
 5 July 2020 (Sun) – We drove over to the Mohonk Mountain House today.  Thought we’d check them out for the farewell dinner and then take a hike around the area.  Unfortunately, they now have a gatehouse to control access to the place.  They have us a brochure to look at and a telephone number to call but wouldn’t let us go in.  
     Then we drove by another restaurant but they were closed.  No signs on the door.  We couldn’t tell if they were just closed or if they had gone out of business. Cross them off the list.
     We made a quick stop at the grocery store so Paul could pick up milk for his coffee then returned to the campground.  We got to enjoy another campfire tonight.  Two in a row. Wow.!
     We drove into Newburgh and took a stroll on the Walkway Over the Hudson.  It was an old railroad trestle over the Hudson River built back in the late 1800s.  It was repurposed into a level concrete walkway that stretched for more than a mile and a third.  We walked out to the middle, took a selfie, and walked back.  The day was lovely.  There were lots of people on the bridge – strolling, biking, walking the dog. Almost everyone obeyed the signs and wore a mask.  Some people didn’t.  It was very warm and my mask was wet from sweat by the time we finished our walk. It was a good time.
     We drove to the FDR National Historic Site to look over the presidential library and home.  The visitor’s center was closed.
 4 July 2020 (Sat) – We were going to drive to the Mohonk Mountain House today but stayed in the campground instead.  We had a small BBQ and sat before a delightful campfire.  The campground is pretty full with lots of kids. Bonnie is barking at bicycles, skaters, and walkers.  The staff came by yesterday passing out flyers about the pool.  It was going to be open today from 10 to 4.  They were having people sign up for a one-hour block of time.  The pool is limited to 25 people but they were thinking they wouldn’t be able to do that and still have people maintain their distance.  We didn’t sign up.  It seemed better to leave the time slots to the kids.  Normally, they would spend the whole day in the pool.  This is like a tease.  But I suppose it’s better than nothing.
 3 July 2020 (Fri) – Things have been quiet.  We have been running around trying to line up restaurants for the caravan next year.  We are now at the KOA in Newburgh for a week.  
 30 Jun 2020 (Tue) – We pulled stakes at 9:25 am.  It was a white knuckle exercise in getting out of our site.  Paul had to ask the guy behind us to move then he backed up the RV to get out.  Trees and other RVs and yard “stuff” in the area made it impossible to pull out from our pull-through site.  Paul did it perfectly!  He is so good in moving our big monster.  It’s almost like it’s an extension of his physical being.  Just imagine maneuvering 54’ of truck and trailer. I can’t do it!
     We arrived at Shadowbrook RV Resort at a little past 11:30 am (it was a very short drive).  This campground only has 18 campsites for transients.  Again, we’ve been undone by the seasonal campers.  After set up, we drove to four separate campgrounds and all gave the same answer – no room at the inn!  The last campground we stopped at recommended the KOA up on Route 20. We’ll try them tomorrow.
     We drove by the National Baseball Hall of Fame.  They are on a limited opening.  I left a business card and someone will call me back.  I also sent emails to the tour director for the NY Capitol in Albany and the USS Slater.  Communications continue with other venues as well.
 29 Jun 2020 (Mon) – We drove to another campground this morning to check it out.  It turned out to only have 4 available campsites for transients.  The rest are filled with seasonals.  Too bad.  It was a really nice campground right on Saratoga Lake.
     On the way back to the campground, we refueled for tomorrow’s trip and picked up chicken and water.  Bonnie has diarrhea again.  It just seems to be something that she’s going to go through on a regular basis no matter what we give her.
 28 Jun 2020 (Sun) – We left Ticonderoga at 9:20 a.m.  It rained a little in the three hours it took us to arrive at Adventure Bound RV Resorts & Campground.  The campsite we got was very tight while Paul had to maneuver around a parked van, trees, and lawn decorations.  This campground, although very large (over 300 campsites), would not suit our group and many campers are seasonal.  The RV next to us hasn’t been moved in years.
     As soon as we were set up, we headed out. First stop was at Chili’s for lunch.  We both had a grilled chicken salad.  Tummies full, we drove to four different campgrounds.  Two wouldn’t fit the group, one had no one in the office, and the other took our phone number to give to the owner.  It was not a very productive day.  Hope things get better tomorrow.
     On the way back to the campground, we stopped at Hannaford to pick up groceries. It was a nice supermarket.  Why can’t we get any of these grocery stores on Long Island?
 27 Jun 2020 (Sat) – It was a light day.  We just hung out around the campground today.  I made some calls and updated the files on what we’ve collected so far.  The poor wifi service here is maddening!  Even the cell service is poor.  I’m glad we won’t be staying here as a group but I worry the other campground might be just as bad.  After all, we are now in the mountains.
 26 Jun 2020 (Fri) – We drove into Lake Placid today.  It is a small town.  The Olympics Museum was closed.  We decided to have the group explore the museum then go out about the town on their own.  There is a lot to see in this little tourist town.  
     We then drove to Whiteface Mountain.  We wanted to drive up the Veterans Memorial Highway to the peak.  Unfortunately, it was $25 per car to drive up.  I thought that was too much money to go up there and find everything closed (not that there is that much up there to see other than the view).  We turned around and left.  
     Right next to the entrance for Whiteface Mountain is Santa’s North Pole Workshop. We came up here twice with the kids when they were little.  The workshop is still there with the post office that will send off a letter or postcard with the North Pole return address.  The park was also closed.
     We drove to Ausable Chasm, the Grand Canyon of the Adirondacks.  It was beautiful.  We spoke with the sales manager and got information on a walking tour, float trip, and lunch at the center.  It will be a nice touch for the group.  Up the hill right next to the chasm center is the Underground RR Museum. It is in a beautiful old stone building. It was closed but a woman stepped out of the building to speak with us.  The cost to explore the museum is free and the place is very small.  Guess we’ll have the group break up into smaller groups to tour the museum.
     We also checked out two other campgrounds.  The KOA seems like the best option at this point.  It would have been nice to stay at the North Pole Hundred Acre Woods Campground but they don’t take groups of more than six rigs.  Oh, pooh!
     After we got back to the campground, we did the laundry.  
 25 Jun 2020 (Thu) – Well, we learned today why a scouting trip is so important. We left 1000 Islands CG and headed out to Ticonderoga, 170 miles away.  The GPS in the truck tried to route us though Canada.  It would have added 100 miles to our trip!  Instead, we followed the route on my phone.  The trip went through Adirondack Park.  We saw mountains but the elevation never got much over 2,000’.  The roads were narrow and winding and the driving was slow but we got here safe and sound.  The scenery is beautiful with occasional glimpses of the lakes and rivers beside the road.
     It turns out that this campground does not have enough campsites for our group – they are mostly for seasonal campers.  Paul went through a list and found an alternative campground.  In fact, he changed two campgrounds for one and we now have another stop on our itinerary.
    After set up, we drove to Brookwood RV Resort and interviewed the owner for a possible stay there.  They are a very popular campground and she suggested we get our reservations in ASAP. The only thing we don’t like is that we wouldn’t all be together.  Everyone would be spread around the campground.
     We drove down the road to another campground owned by the U.S. Forest Service but it was closed.  We then drove into the town of Ticonderoga.  The Star Trek Museum and Fort Ticonderoga were both closed due to the pandemic.  We walked into a luncheonette across the street from the Star Trek Museum to see about a lunch for the group.  Our group could go to the museum at 10, go to lunch at 11 (it’s a little early but that’s what they want), then take a tour of the fort. The other option is to wait on lunch until 2 pm, which is kind of late.  I don’t like either option.
     As we were driving around, we spotted an old stone chapel in a graveyard.  We parked and went in to explore it.  It reminded me of the Viking church on display in DisneyWorld.
 24 Jun 2020 (Wed) – We drove over to Alexandria Bay this morning.  We stopped at U.S. Boat Tours which I had emailed to ask about a tour of the Singer and Boldt Castles.  We checked at the window to find out what time the shuttles and tours ran.  After getting the times, we decided to have the group go to the Boldt Castle at 10 a.m., come back to town, wander the shops, and have lunch.  At 2 p.m., we’ll have everyone come back and take the tour to the Singer Castle.
     Afterward, we drove around the area, checking out different places.  We also drove over to Wellesly Island and looked at the state parks and golf courses there.  We also stopped by the ice cream shoppe in front of the campground to find out about an ice cream social.  They sell 3-gallon containers of ice cream for $45.  The lady suggested butter pecan as an older person’s favorite flavor.
 23 Jun 2020 (Tue) – We packed up and left Stow at 9:15 a.m.  The drive was easy but took almost 4 hours.  When we arrived, the office was closed (we had checked in online), and a note on the door told campers to proceed to their assigned site. After set up, we left a message for the campground manager asking for a meeting.
     We drove to Clayton where Main Street was under construction and closed to traffic. We had seen a delightful hotel with a restaurant years ago that boasted the original Thousand Islands dressing had been invented there.  Unfortunately, the restaurant went out of business.  We spoke with a manager at Bella’s.  The restaurant was pleasant but she said they did not want to have a large group in to dine during their peak season.  She preferred to cater a meal of assorted wraps, salads and desert and suggested we eat at the Antique Boating Museum.
     We drove past both the Thousand Islands Museum and the Antique Boating Museum. They were both closed.  I sent emails asking about admission and meals. This is becoming very frustrating. Many of the businesses that I have sent emails to have not answered.
     When we got back to the campground, we met with the campground camp host.  Whe was very chatty and gave us lots of information about the area.  I have to follow up with an email so she can share it with the owner.
 22 Jun 2020 (Mon) – We drove to Seneca Falls today, noting the mileage to various areas along the way.  Everything we wanted to see was closed.  The National Women’s Hall of Fame, although the name was displayed on the front of the building on Main Street, is no longer there.  A woman in the visitor center told us it was relocated to a mill across the bridge but the coronavirus had stopped the set-up and opening of the center in its new location.  We drove over and saw that it will be 3 stories high and promises to be a good stop. There is also a National Women’s Rights Museum on Main Street and a couple of houses around Seneca Falls that people could tour if they wanted.
     Waterloo, birthplace of Memorial Day, is next to Seneca Falls.  There is an American Civil War Museum and memorial graveyard in town.  I think it would be appropriate to include it in our itinerary but Paul thinks it is too much.  If so, we will certainly have to suggest it as a stop on their own.
     We stopped at Ventosa Vineyards to see about a group lunch after the Seneca Falls tour.  There is a lovely deck area outside overlooking the lake.  The woman we spoke with suggested we send an email to the catering manager.
     We then stopped at Belhurst Castle.  They have a very attractive stone room with an intimate setting for lunch that also looks out at the lake.  The man we spoke with gave us a menu and suggested we coordinate with the catering manager.  I sent emails out to both managers.
 21 Jun 2020 (Sun) – We packed up and left Bath at 9:50 a.m.  It was only 95 miles to Red’s Twilight on the Erie RV Resort in Macedon, near Rochester.  We arrived about noon.  The office was closed.  Our registration packet was sitting on a table.  As we were preparing to drive to our campsite, the owner pulled up and led us to our place.  She was very friendly and gladly agreed to meet with us later.
     After set up, we cased the campground while walking the dog (it was too hot to let Sheba out – 90 degrees!) then went to the office and sat down with Barb. She said they would give us 10 percent off for military discount.  We were all sitting around the table with our masks on and it got very hot.  I was sweating like crazy.  I sure was glad when the meeting was over.
    We drove into Rochester to the George Eastman Museum.  It was closed.  We then drove to The Strong Museum of Play.  That was also closed.  It is a very large museum and looks like it will be fun.  We then drove to a restaurant recommended by Barb.  It was too far from The Strong to have people walk to it so we will have lunch in the museum then explore the museum.  There is a restaurant inside.
     On the way back to the campground, we stopped at Wegmans Supermarket.  What a huge store!  It had to be the largest supermarket we’ve ever been in.  And it was neat and clean and attractive. Everyone in the store was wearing a mask and the staff was actively wiping things down and making sure everything was sanitized.  
 20 Jun 2020 (Sat) – We drove to the Finger Lakes Boating Museum to meet the Administration Assistant and see the wine cellar where they host catered meals.  It is a lovely room and we are sure the group would like it.  We would probably have the tour of the museum first (there are 3 floors in the museum) then go to the bottom floor for a lunch.  
     After meeting with Nancy Wightman, we drove back to the KOA to meet with the Office Manager.  We sat outside at a picnic table, all in our masks, and discussed what they could offer the caravan next year.  Elaine is pregnant and will be out on maternity leave for a while.  This could cause a problem with coordination but we will see how it shakes out.
     While driving out and about, we stopped at a nearby fish hatchery.  It was closed but they had an observation pool with three kinds of trout in it – brown trout, brook trout, and rainbow trout.  What is weird is that the brook trout is the only native species to the area, yet the hatchery doesn’t raise them – only the other two species.
     We drove around to check out some other places.  There is a VA Center and National Cemetery a couple of miles down the road.  We rode around the cemetery looking at the gravestones.  We also gathered information about other services in the area – RV dealers, hospital, clinic, vets, foodstore, etc.
     We had a campfire tonight.  There is nothing more intoxicating that the smell of a campfire.
 19 Jun 2020 (Fri) – We packed up and left Chautauqua at 9:30.  The weather was good and the drive was pleasant.  We arrived at the Bath-Hammondsport KOA around noon.  They had sent an email asking us to pre-register/check-in.  I did that.  When we arrived, Paul stayed in the truck while I went in.  The clerk confirmed our information and gave us our map and paperwork. This is a lovely campground.  We have been here before and am sure the caravan will enjoy the place.
     We drove around town, trying to find a restaurant to have a welcome dinner in. The three restaurants we chose were all too small and two of them were still closed.  The thirde, the Stone Timber Inn, does catering.  We took the chef’s card and left.  On the way back to the campground, we stopped at an American Legion post and took a look at their hall.  We asked about renting the hall and the bartender gave us the rental agent’s phone number along with the commander’s number.  
     The campground is working hard to ensure people are having a good time, despite the spacing restriction from the coronavirus.  They delivered a packet to make s’mores with.  Folks were invited to make s’mores and post pictures on the facebook page. They also gave us free firewood. It made a delightful fire.  They also had a cornhole contest where people who had the game in their rig wee encouraged to play and report their results.
 18 Jun 2020 (Thu) – We went to the office at 9:30 a.m. to speak with the campground owner.  The doors were locked.  Some guy came out in to the hall, looked at us at the door then went back into his office. How rude!  I then called the office and the owner answered.  We sat at the table outside on the deck and interviewed the guy about the facilities and what he would do for the group. Satisfied, we told him we would send a check and wanted to leave him a book.  He said he was in his office.  When we told him the door was locked, he laughed and said he forgot to open it then stepped out and took the book.
    We drove 20 minutes to the Grape Discovery Center to see what it looked like.  It was closed.  We parked and walked around, peeking in the windows.  It looks like it would be a nice experience for our group next year, so we will include it in the itinerary.
     We found a laundromat in a house (ah, country life).  We put the clothes in the washer then drove to a Mazza’s Winery and had a flight of wines. Then we returned to the laundromat house and put the clothes in the dryer.  We walked around the town of Mayville while our clothes tumbled.
     After we collected the clothes, we drove to Jamestown to check out the Lucy-Desi Museum and the National Comedy Center.  Unfortunately, they, too, were both closed because of the pandemic. This situation is going to make it hard to develop a budget for the caravan.
     Paul located a WalMart and we did some food shopping.  We are starting a diet and needed to pick up all the right kinds of foods.  I just planned 4 days and the frig is chocked full.  I will not be able to shop a week at a time, that’s for sure.
     The check-in time for this campground is 6 p.m. (check-out is 5 p.m.).  We’ve never seen such a late time for check-in. We asked if the owner would put that aside for us when our group comes next year.  
 17 Jun 2020 (Wed) – We left Marblehead, Ohio, at 8:20 a.m.  It was a long drive today so we left early.  The drive was over 4 hours and took us along the lakeshore of Lake Erie, through Pennsylvania and into New York.  The campground looks like it was a KOA at one time. Our campsite is a pull through with a concrete surface.  The campground is on Chautauqua Lake.  The pool, the store, and all group centered places are closed due to the pandemic. You have to wear a mask in the office.
     After set up, we drove into Mayville to meet with the operations manager of the Chautauqua Belle paddlewheeler.  He was a young man who seemed to be coordinating a group tour for the first time. We went over is suggested schedule and agreed on an itinerary.  He will draw up a contract and send it to us.
     Then we drove down the road to the Chautauqua Institution.  It is one of the stops on the itinerary Mike put together and we wanted to look at it.  It’s not very clear why we should take a tour of the place.  It seems like a private community with very lovely homes on the lake. The roads are very narrow and seem to wind aimlessly around the neighborhood.  There is a beautiful old hotel where he suggested we have lunch. We wanted to get some information about the place but the visitor’s center was closed.  I’ll have to send an email.
     We drove to Jamestown and picked up food at Pet Smart.  Then Paul drove up the other side of the lake to the center where the interstate crossed the lake.  We got back to the campground at 5 p.m.
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cyanidefilledcandy · 6 years
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I wound up crying myself to sleep...
When I woke up, I just felt numb all over. Still do. I've just been laying here for the past 2 hours drifting in and out of consciousness. I have no idea if I'm just tired from missing sleep last night or if I took too much medication...
I have been kinda like a zombie all day, and there's no telling which is which... Though, part of my not moving for the past two hours is just me being terrified of setting off another attack...
Went to the neurologist today and the very first thing he asked me about was my depression and was I taking anything for it. Knew right then guy was nothing but a pill pusher...
He didn't ask any of the questions that literally every other doctor I've seen (including another neurologist) did. He just saw I had a history and family history of migraines. He decided that was my problem on the grounds that what I was telling him sounded like migraines....mind you, he only asked about migraines, not my actual problem that I was there to see him for. I tried desperately to explain to him that I haven't had a migraine in over 3 months and that a migraine wasn't the issue. But he insisted. So, I'm being treated for migraines instead of the problems I'm ACTUALLY having....but still nothing for pain.
It was like literally everyone could see and hear how much pain I was in except him. I couldn't even fucking write, I was in so much pain. But what does that matter?
I want to give up, and actually almost did earlier. I was so much pain, I can't even explain it...if I had a gun, I'd likely blow my brains out just to stop the feeling. I was popping every pill in my home I could find, to no avail. I was losing it. The pain was just too much, coupled with the fact that it doesn't seem as if I'll actually get any help until 2 weeks from now (MRI) and in the meantime, my life is just falling apart around me.
But....what does it matter, right? I need to go to the restroom (and have since I first woke up two hours ago), but I don't have the energy or will to...
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ficdirectory · 7 years
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The Fosters: Our Thoughts on Episode 5x03 “Contact”
Time for another twin recap of The Fosters.  As always, check out @tarajean621‘s thoughts on Jesus and brain injury representation in italics below:
You Could Have Told Me You Were Out on a Date/It’s Not a Date. Sorry/This Isn’t a Date?!  Hahaha!  How awkward.  Mariana, just along with Callie and Aaron to watch Ximena roller derbying...
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Maybe We Could Go Out Sometime Without Your Sister?  What Do You Wanna Do?/Anything/Okay.  I’ll Make the Plan:  Callie, maybe you want to be a bit more specific with Aaron here.  
It’s Not Like I’m Asking You to Get Someone Out of Prison or Prostitution.  Or Maybe You Just Don’t Care ‘Cause You’re Graduating Soon:  Mariana!  Settle down.  Callie can’t help you distribute the underground school paper.  She can’t get in more trouble.  Find someone who can.
Thanks for Helping Out/Unlike Some People...  Mariana.  Just because Moms are thanking Aaron for helping doesn’t mean you need to get all unnecessary with Jesus.  Seems like there’s a lot going on in the kitchen, and sometimes, when that’s happening it’s easier (and safer) for us to just stay put.
I’m Sure They Miss You/I’m Sure They Don’t/I’m Sorry.  What Was That?  Oh, I love how Mariana’s comment to Jesus went unchallenged but his jab at her was immediately called out... <-- Sarcasm
Jude.  Jude.  Jude!/What?  Hahaha!  One of my favorite parts.  Also I love how Jesus is waving to get Jude’s attention.
I Have to Do a Self-Portrait/How About We Take Candid Photos of You and You Can Decide Which Looks the Most Like You/That’s Actually a Great Idea/Thank You.  I’m Full of Great Ideas:  Of course you are, Mariana.
I Have an Idea, Too.  What If Everyone Writes My History Paper, and Then I Pick Which One Will Get Me the Best Grade:  Hahaha!  I miss your hilarity, Jude.
Five Hours Chained to a Deep Fryer/At Least You Weren’t Chained to the House All Day/I’m Sorry.  Were You Actually Talking to Me Just Now?  That’s Amazing:  Oh my God, Brandon, LOL.  Also Moms, please tune into this portion of the conversation...Jesus is really over being at home all day every day.
Moms?  Can I Go Back to School?  ...Seriously.  When Can I Go Back?  I’m Bored and I’m Missing Out on Everything/We Understand, Honey, But.../Honey, Let Us Talk to Your Doctor, Okay?  Okay but Moms seriously need to stop dodging this conversation.  Jesus is entitled to an education.  (Seriously.  It’s the law.)  A brain injury does not preclude him from that.  And to have Lena in particular, who is an educator, not already on the ball about this just seems out of character and irresponsible.  I would think she would be all over this, and his biggest advocate, having experience within the school system for so many years.  Can we stop with the educational neglect, please?
Stef and Lena have been back at work for weeks now, leaving Jesus essentially unsupervised all day at home.  (Unless you count Gabe, but I do not think Moms do.)  The fact that they deem Jesus stable enough to not warrant constant supervision from a health standpoint along with the strides he has made in all areas of his recovery should at least mean that school should be seriously considered and discussed.  
We Invited the New Neighbors Over for Dinner/You Invited:  Ooh, Stef and Lena.  A little tension?
You Bought the Tickets?  You Didn’t Ask Me What I Wanted to See/’Cause You Told Me to Plan Everything/So, What Are We Seeing?/You’ll Find Out Tomorrow:  To me, it’s just common courtesy to run things by your date, even if you’re the one planning it.  It’s not just a date for one.  I’m totally with Callie here.  If she’s asking, point blank, what the movie is, the polite thing would be to tell her.
Why Are We Inviting the New Neighbors Over? We Never Did That With the Old Ones/Well...Mom Went to High School with Tess.  [She] Was Mom’s First Girlfriend:  Wow, Lena, TMI for the children...
Maybe We Could Talk to His Doctor But After What He Did to Brandon’s Room?/We’re Going to Keep Him HOME Until We’re Sure He Can Handle School:  Mothers.  What even is this conversation?  An education is not a privilege.  It’s a right.  (Not just for the rich and white and nondisabled!)  Jesus shouldn’t be denied the opportunity to go to school because he destroyed Brandon’s room.  
I would understand, “Jesus doesn’t get to do [something he enjoys] until he helps pick up the mess in Brandon’s room.”  But to withhold school?  Literally makes zero sense.  Give him consequences that make sense, Moms!
For the record?  Cutting off a person’s social interactions, activities and education as an attempt to control their behavior?  That’s abusive.  Also, this is not 1974.  Being disabled in public is no longer a crime, and disabled students are afforded a free and appropriate public education as of 1975.
He’s Still Not Talking to Brandon.  What Are We Gonna Do About That?  Um, Lena, were you not present at family dinner where Jesus did speak to Brandon?
Gabe Is Entertaining.  How Do We Feel About That?/I Borrowed the Garage for 30 Minutes:  Well, let’s consider this.  Gabe lives in the garage.  You let him live there.  Was this with the understanding that he would never have people over?  (Also, how are you gonna feel when you realize it’s Mariana and Jude in their secret newspaper meeting, and not Gabe at all?)
Wide-Wise or Long-Wise/Do You Mean Vertical or Horizontal?  Are You Stoned?  Noah.  Seriously.  But I am glad to see that Jude seems to be over his desire to get high.
Don’t Have Much to Compare It To, But I Liked It:  Brandon, your love life so does not interest me.  But it was interesting to see a girl (who’s a bit older) on TV without a ton of sexual experience.
Jesus is Having Trouble with His TBI.  He Gets Angry and Kind Of Explodes/Are You Still Playing For Him?  Okay, what universe am I even in right now?  First of all.  Jesus is having trouble with you, Brandon.  You guys need to stop blaming every legitimate reaction that you don’t like on his TBI.  And secondly, I don’t even know what to say about Grace asking if Brandon’s still playing for him.  Music can do a lot of things for people, but it cannot magically heal brain injuries.
Sounds to me, Brandon, like you do not want to own up to the actions you took that led to Jesus “exploding.”
You’re Installing Security Cameras in the School?/Some of the Students Don’t Feel Safe.  This Will Reassure Them:  Drew, forgive me if I don’t take your word for it on how ‘reassuring’ security cameras are.
Mr. Turner, Your Vote Was Not Valid/If Ms. Porter Won’t Resign, She’s Fired:  Wow.  Glad it’s not a sure thing yet.
Why Are You So Dressed Up?/I’m Not/Why Are You So Dressed Up?  Twins!  Also, Jesus and Callie spoke for like the second time ever!
It Wasn’t My Idea.  Aaron Told Me to Wear a Dress:  Sounds like Aaron’s making a lot of decisions for you, Callie...
Miss You.  Can U Video Chat?/Sorry.  Working on Bot:  Ouch.  And Emma’s not even keeping Jesus in the loop about World’s at all...
The truth is, people can and do pull away after you become injured.  This is realistic.  And it sucks - especially as Emma seems to be the only person outside of his family that Jesus has been able to see, given Moms’ nonsense school ban.
That’s Right, Your Ex-Girlfriend’s Coming to Dinner/Dressing for Tess, Are We?  Okay Brandon and Lena, back off of Stef a little bit.
Can You Put That in the Dishwasher?  Because Brandon was right there, and it’s his plate, but Mama needs to put it in the dishwasher.  
Didn’t You Guys Steal a Car?/And I Get Grounded for Stealing a Garden Gnome/You Stole a Garden Gnome? That’s Hilarious!  Oh, we’re learning all kinds of things at this dinner party, aren’t we?  Stef and Tess stealing cars.  Logan stealing garden gnomes. (That sure was a knee-slapper, wasn’t it, Mariana?  LOL.  I love her.)
You Like Seafood?  We’ll Start With the Shrimp Fritters and Patatas Bravas:  Wow, Aaron.  You ordered for Callie, too.  
I’m Sorry.  I Didn’t Mean to Scare You:  Though I definitely did appreciate him apologizing to Callie for taking her picture without her knowing.
I’m a QB/It’s Good You’re Tall.  You Can See Over Your Lineman:  Hahaha!  OMG, Mariana, so awkward, but so funny!
You’re a Big Guy.  You Ever Play?/I Used to Wrestle, But--/We Didn’t Encourage Football:  Seriously, Lena.  Can Jesus get a word in?
It is so frustrating that Moms will not allow Jesus to complete a thought.  And the way it is playing, it seems as if it is because they are constantly worried that Jesus will flip the table over and rip his shirt off in a rage at any moment.
I wish they would attempt to respectfully hear him out, however Moms seem prone to dismiss his concerns or shut him down.
As a Doctor, You’re Not Concerned About Concussions?/Absolutely:  Valid concern.  One of our brothers got three in a row playing high school football.  Doctors still cleared him to go back and play.  He made the decision on his own to quit for his own safety.  But perhaps not dinner conversation, Lena?  (Also, I’m mildly annoyed that that Tess keeps being addressed as if she’s a neruosurgeon instead of an orthopedic surgeon.  She works with bones, Moms, she’s not an expert on the noggin.)
Why Are Girls Always Left Out of the Contact Sports?/Because Girls Channel Their Aggression Through Tweeting/Jesus:  Oh I love how even this back and forth comment to Mariana earns another warning from Moms.  <-- Sarcasm
Moms are seriously monitoring every single word that comes out of his mouth.  Let him speak.  
Oh. My. God. Does Your Girlfriend - Who’s on the Wrestling Team - Know How Sexist You Are?/I Was Joking/You Better Be.  She’ll Dump Your Ass:  But Mariana threatening Jesus that Emma will dump him just skates by unacknowledged.  
Mariana knows Jesus has been feeling vulnerable about his relationship with Emma, so this comment was extra crappy.  Made more crappy by the fact that no one called her out for it.
We Like Football/We Just Don’t Want Our Kids to Get Hurt/You Don’t Have to Play Football to Get Hit in the Head and Screw Up Your Life, Right?  Watching this now, it’s obvious that Mariana’s comment about Emma touched a really raw nerve and has Jesus feeling insecure all over again about the state of his relationship with Emma.  He can already tell she’s pulling away, and she likely wouldn’t be if not for his brain injury.
This is a legitimate statement.  Why must it be treated as an outburst?
Can I Be Excused?/Yes, You May:  Tell me again how Jesus is so irrational and angry.
Well, I’m Sure Your Neurologist Told You That Damage to the Frontal Lobe Can Cause Sudden Aggression.  Sometimes Unprovoked:  Okay but you’re not a neurosurgeon, Tess.  So you really don’t need to keep feeding into this idea that Jesus’s logical reactions have no basis.  And also, Moms, what is up with outing all of Jesus’s private medical info to the brand new neighbors?  Whatever Jesus wants them to know, he’ll tell them himself.
I’m so over this Aggression Is A Symptom storyline.  Make it stop.
He Seems Like a Sweet Kid/He Is.  He’s Such a Sweet Soul.  He Just Can’t Control These Outbursts of Anger:  Thank you, Dean!  But seriously Lena, what outburst of anger?  You weren’t dismissing Mariana’s reaction to Jesus talking about her tweeting as an outburst.  Or Stef’s reaction to being teased about dressing up for Tess.  Just because Jesus has a brain injury does not negate the validity of his feelings.  (And I wish Jesus could hear Lena say he is such a sweet soul, instead of what he overhears later on...)
Why does Jesus need to stuff his feelings in?  To spare yours?
From What You Guys Have Told Us, His Physical and Cognitive Functions Have Improved and That’s Huge:  Holy God, Moms.  Just how much have you overshared with Tess and Dean???
I’m assuming that Stef also shared every excruciating detail about her double mastectomy as well - Tess is a doctor, after all... <--- Sarcasm
He Really, Really Wants to Go to School.  Just, We’re Not Sure/I Think He Should:  Except feel free to give advice here, Tess.  Seriously.  Jesus deserves an education.
THANK YOU, TESS!  
[School] Can Create Added Stress as Well/Have You Thought About Getting Jesus an IEP?/Yes, Of Course, We’ve Thought About It.  We Will Have Him Evaluated When We Feel He’s Ready:  Lena, you can’t keep Jesus in a bubble the rest of his life.  He needs to go to school.  Yes, there’s going to be stress there.  But the point of an IEP is so that he’ll have the accommodations he needs in that environment.  No, it’s not a cure-all, but that is literally what it exists for.
And when exactly will Jesus be “ready” for school, Lena?  When his brain injury magically goes away?  When he acts the way you want him to act?  You can’t use school as a bargaining chip.  It’s just gross.
If, at the beginning of the series, we heard that Jim Pearson was not allowing Jude to attend school?  The viewing public would overwhelmingly see that as abusive.  This is abusive as well.
One on One Classroom Aide/Definitely Something We Can Look Into/Yes, I Know:  If you know, Lena, then what the heck is up with all of your defensiveness?  Sorry these words aren’t coming from someone you’d prefer them to come from, but you and Stef need to hear it.
(And while I know aides serve a purpose in school settings, they also do a heck of a job alienating a kid socially.  I speak from experience.  I hope if Jesus does get one, that they’re respectful.)
Lena, you do not get to use Jesus’s right to an education as an excuse to be petty.
I’ll Make You a Deal.  One Week.  You Don’t Play Video Games.  I Don’t Get High:  I did like this scene between Jude and Noah, though.  They have some good chemistry together.  (Though I wonder if they still will when Noah’s not stoned?  Has he ever not been high when he and Jude are together?)
Look at Jesus’s Photoburst.  He Didn’t Even Bother to Narrow It Down to One or Two/That Sounds Like Jesus:  Maybe he wanted you to have a lot of options, Callie.  But my gut says it’s probably easier to hit a button and send them all at once than it is to look at each one and try to narrow it down...
Wish I Was This Girl/You Are/Wow.  Harsh/You’re That Girl, Too.  You Have a Lot of Layers.  That Other Picture is Just You With Some of Them Peeled Back:  Brandon, so nice of you.
So Resting Bitchface Callie is Just One of My Many Layers?/It’s Not a Bitchface:  Hahaha!  I loved the commentary on resting bitchface Callie.
Is That Why I Haven’t Heard You Playing Music?/Well, For One, Jesus Smashed My Keyboard, So.../We Have a Real Piano:  Tell him, Callie.
OMG Brandon! I’m glad Callie finally stated the obvious!
We Find No Grounds on Which to Fire Ms. Porter.  She’s Still the Principal of Anchor Beach:  Thank goodness...
You’ll Never Get Another Job in Education.  And You?  One False Move?  And You’re Next:  Wow, that’s bold, random school board lady.  Threatening Lena...
What the Hell is This?/Vive La Résistance:  Yes, Lena!  (And yes, Mariana!  Fly your drone and drop those papers!  So cool!)
Property of ABCC STEAM Club:  Oh no.  So sad your drone crashed, guys!
I’m Sorry I Didn’t Want to Jam/So I Got All Weird: OMG Brandon and Grace, look at you two dorks, hahaha!  Clearly you’re made for each other the way you sing to each other about your feelings.
We Can’t Do The Paper Anymore/Why?/Because Drew Will Cancel Prom and Everyone Hates Me Enough as It Is:  I’m loving getting to see more of Mariana and Jude’s sibling dynamic.
I Don’t Like Surprises.  I’ve Had Too Many Bad Ones.  So I Need to Know the Plan, Even If You Make It:  I loved this conversation between Callie and Aaron.  I love how respectful it is.  And I love that Callie did mention that Aaron took a bit too much of the control, telling Callie how to dress, what to eat and picking the movie.
Hey.  Thought You Were Gonna Call Me Today?  Totally been there.  Where you want to send the text, but you’re not ready for the response you’ll get...
I Was Wondering if I Could Try Out For the Team?/Is It Cool With Your Parents? Yes, if cool means I’m Mariana and I foraged my mom’s signature, then totally.  (Also, I love Mariana’s green nail polish, and I really am hoping for a strong friendship / mentorship between Ximena and the Adams Foster girls.)
Have You Given Anymore Thought to What Tess Suggested?  Getting Jesus an In-Class Aide?/Suddenly You’re Ready for Jesus to Go Back to School Now That Dr. Tess Medicine Woman Thinks It’s a Good Idea?  Every time this scene starts with Lena on the phone, I always think, “Oh, good!  She’s talking to ABCC about what needs to happen to get Jesus evaluated for an IEP!”  But nope!  I get that the timing of Stef changing her mind about Jesus going to school is suspicious.  (It is.  She’s shown zero indication that Jesus going back to school was even something she would consider prior to this conversation.)  But the bottom line is?  If Jesus were in any other minority group, holding off on sending him to school would be ludicrous.  Why is it okay here?
It is not okay.  There is no reason he should not be enrolled.  Lena (apparently Jesus’s official caregiver) has been back at work since roughly 4x15.  About a month has gone by since then by my calculations.  A month of Jesus sitting at home alone all day - apparently so stable medically that he does not need constant supervision.  
Jesus’s visual disturbances subside enough that he is able to read in 4x18.  It has been close to two weeks since then from what I can gather.   I can see putting off school up until this point, but after that?  I can see no reason that school is not part of an ongoing conversation.  Accommodations and IEPs take time to be drawn up and put in place, but they cannot be utilized until the appropriate meetings and appointments happen.
I Honestly Don’t Know What to Do About Jesus.  We Can’t Be in Denial About The Fact That He Is Unpredictable.  He’s Potentially Dangerous.  And We Don’t Know If He’s Gonna Get Any Better.  I Mean, He May Be Like This For the Rest of His Life.  Stef, Sometimes, I’m Actually Afraid of Him:  Wow, Lena.  Seriously?  I can’t tell you how many ways this devastates me.  First of all, because Jesus overheard the whole thing.  Secondly, because your ableism knows no bounds!  Jesus literally was not out of bounds in any way this episode.  So I really wish the harmful brain injury representation would stop already.  
Because you know what that leads to?  Fans commenting with remarks like, “I’m scared of him, too.”  Comments like, “He’s violent and scary.”  “He’s a monster.”  “IDK why they ever messed up his character.  This isn’t the real Jesus.  He’s like a whole new person now.” “Thank God Emma loves him,” and “Jesus is going to think he is better off dead.”
How does a portrayal that constantly dismisses the legitimacy of a person with a brain injury’s feelings help that part of the population?  It’s only alienating them more and putting them in more actual danger, because if people are going to watch this show with zero experience with a brain injury themselves or as a family member or friend, they’re going to see a stereotype (that people with brain injuries are violent and need to be put in their place or handled violently before they can become violent) and a damaging disability narrative (which is that when you become disabled, you become a burden to your family.  And the only validity your experience has is how it effects them, because all of your own feelings are “just a symptom.”)
Please let Moms and the family become aware of the harm they are doing.  This is beyond damaging and has real consequences for real people.
Your son has a brain injury.  His brain is altered.  He will make improvements, but yes, he will be “like this” for the rest of his life.  So start seeing him as a human being, not just a list of symptoms.  Start talking with him, and more importantly, start listening to him.  Network with other TBI survivors as well.  Send him to school.  And please, check your ableism.  Because your harmful disability attitudes will hurt him far more than the injury has.
For more: Fosters Recaps
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averyevilunicorn · 7 years
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The last academic year: a special edition
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I’ve been feeling kind of down about how little I’ve done in my first year (courtesy of my assessors, who pretty much spelled it out for me), so I’ve tried to assess all that has happened. So...
happy arrival to the university to start my Phd in October
the announcement that my supervisor is leaving and that my department is closing
a relatively normal first term, with a preliminary semantic essay written, the text corpus assembled as well (ignoring the fact that it then changed)
my mother in a hospital in critical condition, with me being unable to go back to my country
intense pain and tendency to having constant vertigo since january
my mother getting better and my college starting to ask what the hell is happening in my department
accepted in a research group not that related to my doctorate, but the one i really wanted to get in
my first one-hour seminar talk, nearly losing consciousness in the middle and needing to take a break, but deciding to be tough and finish it
finishing the second term with 'i taught at high school about medieval history' being the most significant progress, though i've also written a first version of the paper for my transfer of status
an even stronger tendency to having constant vertigo during march and april, technical house arrest and 'if you ever faint, go directly to hospital'
a shitload of medical tests, diagnose of a slight B12 deficiency and suggestion to also visit a neurologist
my mild lactose intolerance has been transformed into a not so mild lactose intolerance
my department still can't decide what will happen with my studies
a bit of a needed health break in may, with a lot of research group workshops, one graduate conference and really exciting training with museum education officers
vertigo returns with a vengeance, inability to break repetitive motions for hours, inability to tolerate loud noises, one breakdown in my supervisor's office
submitting my transfer of status paper, attending teaching in higher ed training and then one cataleptic episode lasting 10 minutes and scaring the people around, all in one day
one out-of-hours GP visit and a ban on driving and cycling
my department still can't decide what will happen with my studies
one hospital assessment with other shitloads of tests, a long interview and 'i have a good news for you, i don't think there's anything wrong with your brain. i think you just might be autistic.'
all in all the third term was a strange one, and i've rewarded myself with visiting a nice conference in my favourite country and short holidays in Scotland, which went well except for airport breakdowns, but they're kind of the norm for me
my abstract got accepted for my first regular, not graduate-only conference (happy and scared - see, doc, sometimes i am actually able to identify my emotions immediately)
one assessment of my entire life at university's counseling services, 'had any one suggested anything about your behaviour when you were younger?' - 'well, my family always made fun of my speech patterns and my movements, my kindergarten teachers complained i prefer playing with objects rather than children, lack motivation for interaction with others and seem to not understand or willfully ignore instructions for group activities, i started school only at 7 since teachers previously didn't think i would be able to cope, and throughout the whole school experience there were loads of accidents involving wrong smells, wrong music and my overall 'oversensitivity' to pretty much anything, and... shall i continue?'
passing the transfer of status interview, in the same day (i'm starting to see where i'm possibly making a mistake) while being told i did good work, but i should be able to do more in one year (yeah, i wish)
with the help of the counselor, a 'fast-track' application for a referral to a specialist for a possibility of Asperger's syndrome
waiting to hear back
my mother's reaction: 'So I've tried to read what it is they're trying to diagnose you with... and it actually makes sense! every single weird thing you did i could never understand suddenly makes sense!'
one, for the lack of better term, epileptic episode caused by the sudden and unexpected use of a frigging stroboscope, several and shorter cataleptic ones (i don't think i'm ever getting that driving license)
the common practice of interacting with people while covering my ears almost all the time
explaining things to friends: 'you didn't want to speak with me, i don't know why' 'well i was holding my hand in a really odd position, staring past you without blinking and absolutely unable to move for several minutes even though you talked to me, maybe it was more than just not wanting to speak with you, i speak with you all the time' - 'well, it looked like you don't want to speak with me, it was kind of rude'
i have a new supervisor and it's actually someone i know and like, yay, and i do not need to move to a different university
waiting to hear back
So, yeah, this way it seems a bit better, since there were many times when I just wasn’t able to do anything. But the silent judgment was still kind of grating... Let’s just hope the next academic year is a bit more productive. And I should probably really get better at scheduling things.
And to talk about future a bit (motivation!), September plans include:
another meeting with my counselor, to discuss how to make the new academic year a bit less wild
updating my GP about my summer adventures, particularly the ‘it kind of looked like epileptic seizure’ episode
the great room change-over day, which i am really not looking forward (but i'm getting a nicer and more comfortable room, so i'm trying to think positively)
the final preparations for the gallery talk which i will be giving in autumn, stemming from our research group, and all other things associated with the exhibition
meeting with my new supervisor, to consult my plans for the new academic year
writing the paper for the conference
revising the syllabus for the high school history classes
reading, reading, reading (Patristics and Old Irish primary text mainly, the never-ending secondary literature reading list on medieval magic secondly)
really starting to write my thesis in a thesis format, not as a series of loosely connected essays on interesting topics
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cripthevoteuk-blog · 7 years
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Disabled in Theresa May’s Britain #35: Alex [CW: suicide]
From Cardiff
I am a Canadian who moved to Cardiff for a job. I was diagnosed several years ago with primary hypersomnolence, a rare neurological sleep disorder that means when I am not medicated, I often end up sleeping 16, 18 or even 20 hours at a time. When I received my job offer, I had been taking modafinil for my condition for about a year. Thankfully, even though modafinil prescriptions are usually only provided a month at a time because it is a restricted class medication, my sleep doctor in Canada gave me a 3 month supply just before I left, to tide me over until I could get a new prescription in the UK. Little did I know that I would not receive another prescription until six months after I had arrived in the country, and that it would be another two months before I received a prescription at the right dose. 
I registered with a GP surgery during my first week in the UK and made an appointment as soon as I was on their patient roster. I informed them about my health condition, said that I was taking modafinil, and mentioned that I was starting to experience some side effects and would like to explore other treatment options, but wasn't sure how best to go about this. My GP said she would look into it. I never heard anything back. About six weeks later, I made another appointment with my GP to remind them that I needed to be referred to someone who could treat my sleep disorder. The GP I saw that day told me there was no such doctor in Wales. (I later found out this was not true.) I asked her what my options were then. She repeated that there are no sleep doctors in Wales. I asked if the GP surgery would be willing to provide me a refill for my modafinil if I had my sleep specialist in Canada fax them a letter. She said no. I asked if I could be referred anywhere else in the UK then. She told me that is not permitted (I later found out this is not true). I asked whether I would need to see a doctor privately, and how I could do this. She ignored me, and said she'd have to refer me to a psychiatrist because they're the ones who deal with the kinds of medications that are used to treat my condition. I went home and waited for my referral to go through. 
About three weeks later, I got a letter in the post with an appointment for a phone consultation the following week. I stayed home from work that morning to take the phone call. The woman on the phone asked what my concern was and I told her that I had a diagnosed neurological sleep disorder and was in need of someone who could treat me - or at least refill my modafinil prescription, as my supply of medication was by now running very low and I was rationing it to every other day, which was making it difficult to perform at work. She told me they couldn't do that. She was actually calling from the Access and Assessment and Brief Intervention team from mental health services. 
The psychiatrist to whom I'd been referred had taken one look at my file, and concluded that it had nothing to do with his practice, but decided that since I had a history of depression he may as well refer me to an intervention team. After I assured the woman that I was in need of neurological treatment, not psychiatric intervention, she told me I should make an appointment with my GP and request a neurology referral. I rang my GP surgery immediately and requested an appointment later that day but they told me only urgent appointments were available. When I told them that I was in urgent need of a correct referral to obtain the medication that keeps me conscious, they told me that did not qualify as urgent. 
I rang them at 8am the following morning and thankfully got in to see the doctor that day. It was the same doctor who had given me the psychiatry referral. I told her what the woman on the phone had said to me, and requested a neurology referral. She told me there was no way a neurologist would prescribe me modafinil but when I insisted she rolled her eyes and said she'd see what she could do. I waited another four weeks and heard nothing. By that point I was restricting my modafinil to two days a week, and resorting to working from home quite a lot because it enabled me to nap when I needed and work odd hours whenever I happened to be awake. With four weeks passed, I rang the referral department at the hospital to find out what was going on. They informed me that my GP had provided a 'standard' rather than an urgent referral, so my wait time for an appointment would be approximately one year. I rang my GP and said I wanted to speak with her. I was told she was unavailable but that she would call me back later in the day. I did not hear back. 
The next day I called again and was told by the receptionist that the reason I had received a standard referral is because "urgent referrals are only for suspected brain tumours." I asked if they understood that I had a two week supply left of the medication that keeps me conscious, and that without it I was unable to work or to function since I was, well, unconscious. They told me that didn't qualify as urgent. 
The next day I made an appointment and was seen by a different doctor at the same surgery. She repeated that urgent referrals are only for suspected brain tumours, but said that she could request an 'expedited referral', which would happen at the discretion of the neurologist. I asked her to please do that. 
Five months after arriving in the UK, I completely ran out of my medication. I went AWOL from work for a week because I wasn't aware enough to realise I should probably ring them to let them know what was happening. I couldn't make it out to go grocery shopping and I couldn't be sure I'd stay awake long enough for food delivery to arrive, so for a week I subsisted off of a block of marzipan I had in my cupboard. When I finally woke up a bit toward the end of the week, I rang my mum in tears and thankfully, she offered to fly to the UK to help me. I called my GP and told them I hadn't eaten or bathed in a week and apparently that was enough to qualify me for an urgent appointment there. 
The doctor I saw that day told me that I'd just have to wait for my neurology appointment (fortunately, I'd finally received one, that was to take place two weeks from then). He wrote me a sick note to cover me for a month of absence from work. Two weeks later I had my appointment with the neurologist. When I told him I'd been experiencing cognitive deficits related to my condition, that it was impacting my ability to work, and that I was concerned, he replied "you sound fine right now; I'm not worried." When I mentioned that the modafinil had been causing some side effects and asked about the possibility of switching to another of the meds commonly used to treat primary hypersomnolence, he refused. When I asked why, he said "I won't prescribe those for hypersomnolence." I later learned this was likely because they are second-line medications and the way they are budgeted for means that doctors are discouraged from prescribing them. He said that the best he could do was prescribe me my modafinil at a quarter of the dose I'd been taking, and that hopefully that would mitigate the side effects. (It did not. It did however mitigate the actual useful effects of the drug. However, it would be awhile until I even received that prescription.) 
A week after my appointment with the neurologist, I'd still heard nothing from his office or from my GP. I rang my GP and they said they'd heard nothing from the neurologist and could do nothing until they did. I rang the neurologist's office and his administrator informed me that he hadn't yet prepared the recommendation letter, but that he’d had an accident and would be off work indefinitely. When I asked what this meant for me receiving my prescription, she repeated that he'd be out of the office indefinitely. I rang my GP back and they said they would ring the neurologist's office to see if they could fax his notes from my appointment to my GP. The next day I rang the GP again; they'd left a message with the neurologist's office but hadn't heard anything back. The next day I rang again; they’d still heard nothing from his office. This began a two week period where I and my mother rang the neurologist's office multiple times per day and never heard anything back. A week in, the receptionist changed the outgoing message on the voicemail to request that patients not leave multiple messages. 
Two weeks in, my mum went to the neurologist's office and refused to leave until they faxed my records to the GP and rang the GP to confirm they had received them. It took my mum two and a half hours to convince the receptionist to do this. It took five minutes for the fax and the phone call. The next day, I finally had my modafinil again, though at such a low dose I was still having to ration it, and was only able to return to work part-time. 
My parents ultimately supported me to see a sleep specialist in London who prescribed me modafinil at the correct dose, enabling me to return to work full-time after three months of absence and one month of part-time. During that four months, I was suicidal. I was terrified of losing my job. I was terrified by the resurgence of my symptoms. I wasn't able to do basic things like buy or make food, or shower. I was terrified by how utterly powerless I was in this situation. I was terrified and angered by how little anyone seemed to be interested in helping me. I don't know what would have happened if my mother hadn't been able to come over, care for me, and fight for me. I am incredibly privileged that my parents were able and willing to support me through this - though it's worth noting they have now had to delay their planned retirement by several years because of the cost of mum taking several months off work, flying over and caring for me, and paying to see a private specialist. I felt incredibly alone whilst experiencing this, but as I have become more familiar with the experiences of other disabled people dealing with the bureaucracy of a severely underfunded, devolved NHS, I am realising what I experienced is quite standard. We hear a lot about how they are trying to kill us off by denying benefits, but the dismantling of the NHS is the second major battlefront of this regime's war on the disabled. They are denying us healthcare so that we will disappear. 
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imsarahcate · 7 years
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I’ve had a difficult history with doctors.  A few here and there that seemed to at least care about what I was dealing with, but for the most part, I’ve been shuttled around, disbelieved and disrespected.  I’ve been treated like an idiot and an oddity because of my weight.  I’ve been ignored and disregarded. While my oncologist and her staff are all amazing, and I *like* my existing PCP (her staff is NOT amazing), most of the doctors I’ve dealt with in my adult years have been super inadequate... to put it nicely. Particularly my neurologist who flat out lied about having ideas about how to try and find something to help with my pain.
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Most recently, the nurse in my PCP’s office created a bunch of roadblocks for me when I tried to get my metformin re-upped.  Difficult enough that I gave up trying to get it and have been without it since June of last year.
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So, after hearing rave review about this doctor in Plano both from a friend and then from online reviews, I called to make an appointment.  I called on a Thursday, there’s was an appointment open the very next Monday (yesterday).  And I have to take the time to talk about that appointment.  I have a lot of trouble getting around these days.  My pain is constant and if anything, getting worse as time goes on.  Getting around the UTSW hospital system can be exhausting and difficult and stressful.  Getting to my PCP’s office there is a nightmare for me.  It wipes me out for like 2 days.
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Getting in and out of Dr. Duhaney’s (my NEW PCP) is a breeze.  Parking is good, the elevator is right inside the door and his office is down the very first hallway on the 2nd floor.  It’s easy to get in and out and around.  The staff was kind and genuine and caring. It’s a very small waiting room, but comfortable and calm.  At no time was my weight a discussion.  Aside from getting on the scale to begin with (and being shocked to find I’m back down to my post-chemo weight... holy shit) it simply was not an issue.  At all.
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And when the blood pressure cuff came out I started my usual disclaimer- “it’s gonna be super high.  I’m really anxious, I live in constant pain, and I have doctor anxiety too. When I test it at home, when I’m calm and comfortable, I am almost always normal or high-normal.”  The nurse waved a hand dismissively, “Oh, I always figure it’s gonna be high when I take it here.  People get nervous.”
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It’s the least judged I’ve EVER felt when having my blood pressure taken.  It was amazing.  (spoiler alert, it WAS high, but I’ve had higher!)  I gave him the chart I’d created at home (I basically laid out my major medical issues past and present, my meds, my surgeries/procedures and some notes on specific events).  His eyes got wide, he grinned and asked to make a copy.  He (and Dr. Duhaney LOVED it.)  
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Dr. Duhaney was absolutely a phenomenal physician.  In a way that was almost... dreamlike.  You know when you’re a little kid and you get this idea that doctors are amazing, kind, caring people... who just want to genuinely help people?  Dr. Duhaney IS that doctor.  He’s a modern day Marcus Welby.  He listened attentively as I discussed and explained aspects of my medical history and timeline.  He asked questions that proved he’d been paying attention, asked questions that MATTERED.  He believed me, and treated me with an immense amount of respect.
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He listened and paid attention to me when I talked about medications I’d been on.  And when we’d kind of exhausted the medical history portion he asked, “What specifically brings you here today?”
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I said my visit was essentially 3 fold (aside from just needing a new PCP).  
-I fucked up my wrist -I want back on my metformin -I want to talk about options for my pain
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By the time the appointment was over he’d had blood drawn and requested a urine sample.  I had scrips for my metformin (YES!), Naproxin for my wrist, and tramadol to help me sleep through pain flares.  I had an order for an xray of my wrist (did that today), and a follow up appointment scheduled in one month.
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I should get a call about the labs before the end of the week, probably the wrist too.  
And for me, one of the most important takeaways was that when I brought up my pain he looked back at my little chart and listed off all the many meds I’ve tried through other physicians to treat my pain- to no avail.  And while we’re saving the full discussion for my follow up visit in February- he too seemed willing to discuss possibly shifting from anti-neuropathic meds to actual narcotic pain medications.  Something I’ve been denied either approval or access (or both) to for far too long at this stage.  Not only CAN he prescribe them, but he is willing to look into it.  To really finally help me find something that will actually HELP my pain in a way that is meaningful.
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At no point did I feel rushed or hurried.  He spent almost an hour with me (on a 30min appointment to be honest).  And unlike seeing my PCP at UTSW, I didn’t feel like whoever was in the next exam room was getting an earful of my medical history.  And throughout it all, it was clear that he really genuinely CARED and wants to help me tackle my health issues in a way that will be most meaningful and have the greatest positive impact on my day to day life.
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I walked away sort of in a daze to be honest.  It should be noted that he treats his staff with tremendous regard as well.  At one point (I have TERRIBLE veins, Thanks chemo) a 3rd nurse had come in to try and find a line for blood and he kind of chuckled and said, “I’m going to duck out and let him do his thing, there’s always more pressure when the boss is in the room and he can definitely do this without me looking over his shoulder.”  But it was said in a way that really sounded... so respectful and trusting of the nurse’s skill and ability,  It wasn’t “oh ho ho I’m a scary boss,” it was just... this acknowledgment that sometimes the best way to do what you do- is not to be watched while you do it.
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It was just overall a really remarkable experience.  And then I went to the desk to collect my license and my medicare card.  I said, “and I probably owe you money too..”
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The nurse smiled and handed back my ids and said, “Nope.  We send it all to medicare and they pay us.”
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I won’t lie... I... teared up.  For someone as poor as I am, who struggles as much as I do financially (even WITH help), that was... just incredible.  I walked out to the hall and then tears did spill over.  I almost cried again today when I walked out of the xray... again... with no money due.  Even at a location that was covered by my old insurance, my copay could have sunk me for that xray.  Hell, depending on if my doc. was covered or not, the copay for THAT could have sunk me.
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But thanks to my medicare because I’m on disability... I can still pay my phone bill this month.  Something that, 3 days ago, I wasn’t sure would be the case.
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So now I have a new Primary Care Doctor.  One I can actually get an appointment with.  One who wants and has the actual POWER to help me.  And for the first time in literally YEARS, I am daring to feel hopeful again.  Daring to think maybe, even if he can’t... fix it... I might at least be able to sleep again, or even... spend time with loved ones, have the energy to get back to designing and creating and crafting.
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Because I finally have a doctor who actually genuinely cares.  And has the power to do something about it.
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