Folks!!

I just used my shower chair for the first time and this is the first shower where I haven't had a POTS episode where my feet didn't turn purple, the walls didn't go technicolor, etc. In YEARS.

today, 25th october, has been POTS awareness day.

i’ve had symptoms of POTS for a while, but only got officially diagnosed by my cardiologist a couple of months ago.

POTS (postural orthostatic tachycardia syndrome) is a chronic illness that effects your autonomic nervous system - that’s basically everything that your body does automatically. this causes many symptoms such as fainting, heart palpitations, fatigue, nausea, shortness of breath, brain fog, temperature intolerance, and many more. living with POTS and finding methods that work for you to live your life is hard and i struggle with it every day, as does everyone else with this condition.

happy awareness day to all my fellow potsies, remember to have your salt and stay hydrated <3

I have the most horrible itch to bake something but I’m not allowing myself that joy until I’ve deep cleaned my room and the kitchen. The issue is I’m in the middle of a pots flare up and have to lay on the floor with my legs in a chair every five minutes to a sour passing out.

Ok so for years I’ve thought I was just severely anemic because I have a very low resting heart rate, I have no iron in my diet (ARFID mixed with allergies), and it runs in my family. So I was working under the assumption that the near fainting, heart palpitations, dizziness, tunnel vision, etc whenever I stand up was just severe anemia because I haven’t been to a doctor since I was a baby. But I’ve started researching POTS and everything is making so much more sense!! I don’t wanna self diagnose cause I’m gonna be making a doctors appointment for the first time very soon but I used my heart rate tracker on my watch to see how much of a rise there was and I went from a 60 bpm resting heart rate to 105 and within a few seconds of standing up. I was super skeptical that POTS was even a possibility but god at this point? Im shocked I wasn’t tested for it sooner.

To clarify, it’s not that I never needed a doctor, my parents just didn’t believe I, or my siblings need one.

Post-op update!

So I had my 4th hip surgery on Monday (9/16). I had a right hip capsular reconstruction with dermal graft. It took about 3 hours. I did not get sick from anesthesia but I did have an extremely hard time waking up from it. I was in a lot of pain and ended up crying for an hour before I was given the last dose of pain meds. I’ve have 5 surgeries at this hospital and this was the only bad experience I had with the PACU nurses. The alarm kept going off because I wasn’t breathing enough yet they were trying to make me leave. My Ortho admitted me for the night & I was supposed to leave yesterday (Tuesday) at 7am but just as I was setting up my ride home, the nurse came in and told me my potassium dropped. It was 3.5 at pre-op testing and now it was 2.9. My doctor ordered potassium pills then I had to wait two hours for my blood to be re-drawn. It had gone up to 3.1 but he didn’t feel comfortable sending me home so I got IV potassium. It really sucked. My arm felt like it was on fire. In the end, my potassium came back up to 3.5 so I was allowed to go home at 7pm. My hip pain isn’t horrible unless I try to move. I was on 4mg Dilaudid every 4 hours yesterday and now I’m on half a Vicodin as needed. I can’t activate my quads right now so it’s hard to move. My whole thigh is numb. I’m NWB for two months and my brace is locked at 30 degrees so my hip heals a bit stiff.

I emailed my Cardio about my potassium dropping because one of my POTS medications can cause that and he is giving me daily potassium pills to take, though, he said that it shouldn’t have dropped that quickly due to the med. I’ll have my blood redrawn again in a week.

HEY

like this if you’re a chronic illness / POTS / EDS / scoliosis/ spinal fusion blog !!

Need more people in the community to follow :)

Would You Like To Do A Good Thing?

I have a GoFundMe running so I can afford to pay my (rapidly accumulating) medical bills, as well as future appointments and bills I already had before my chronic illness put me out of commission for a while. In addition, I need a new wheelchair! The one I have is very old and reaching the end of its functionality (in fact, one wheel gave out on me coming out of an appointment a couple months ago, and bf had to run to the store to grab tools to fix it. this has happened multiple times since then), but it’s also more for temporary use with things like injuries, pregnancy, and recovering from surgery.  

Speaking of surgery, I had one of those too! On May 1st, I went under the laparoscopic knife to determine whether or not I have endometriosis and check on a cyst we already knew I had. The cyst was removed and we found the endometriosis! All exciting stuff, but also very expensive.

In an MRI of my cervical spine (neck) and thoracic spine (upper back), we found a spot of extreme density within the actual bone of one of my vertebrae. It may be something as harmless and easy to treat as a vertebral hemangioma, or it could be an osteosarcoma. Either way, I’m almost definitely looking at spinal surgery, possibly radiation or chemotherapy if it turns out to be cancer. Obviously that’s expensive as hell and I live in America so if I can’t afford the treatment I’ll just die.

I also need to schedule a surgery to remove my wisdom teeth so they stop causing me constant pain and frequent lockjaw. I’ve already had a consultation, and because of the waiting period on my insurance, I can either wait until July 2020 for benefits to kick in, OR I can have the surgery done ASAP for $2,500 USD. As far as we can tell right now, those are the only surgeries in my future, and I may even get away with not having surgery done on my spine.

I also have a plethora of other chronic and mental illness that require medication. My daily inhaler for asthma is $60 all by itself, and I need a new one every two months. I can’t work or go to school, and I can’t qualify for disability because I don’t have a diagnosis yet, and even then everyone in my house is employed so I’m sure my household income is way too high for me to even THINK about qualifying. As of right now, with a monthly income of $0.00, this is a list of medications and how much they cost me every month:

Sertraline (Zoloft) - $2.34, SSRI anti-depressant for Generalized Anxiety Disorder

Omeprazole (Prilosec) - $10, proton pump inhibitor for acid reflux and abdominal migraines

Norethindrone (Aygestin) - $8, progesterone-based oral birth control to suppress endometriosis and relieve migraines

Montelukast (Singulair) - $10,  leukotriene receptor antagonist for mild to moderate asthma

Flucitasone Proprionate (Flovent) - $60, inhaled corticosteroid for mild to moderate asthma

I also have a few as-needed medications, including an albuterol rescue inhaler, hydroxyzine (Atarax) to help me relax and sleep, as well as treating severe seasonal allergies, and quetiapine fumarate (Seroquel) for when I haven’t slept in days and nothing is working.

Keep in mind also that I have things like a monthly phone bill and credit card payment, as well as future doctor’s appointments, so I’ll likely be put on MORE medication. While this could increase my quality of life or even just keep me alive, it’s also an extra financial burden to carry every single month. As it is, I’m spending $30-$100 USD every month on medication.

As much as I hate to beg for likes and reblogs, I’m running out of options. I need help from anyone who’s willing to lend a hand, even if it’s just reading and sharing my story. Donate here: https://www.gofundme.com/manage/myv8h-help-me-pay-my-medical-bills/donations 

Dysautonomia Shakes?

Does anyone else within the Dysuatonomia community experience random shaking? For me, it’s usually from the waist-up, most notable in my chest and arms. It’s pretty noticeable, despite my efforts to keep friends from seeing. They usually ask me if I’m cold, so I assume it looks something like a shiver. If you do experience these, do you know what causes it? How do you deal with it? 

I think that while a lot of people think it’s “funny” that people buy into health scams, like supplements and detoxing and charcoal and colloidal silver, few understand the desperation you feel to feel like that’s your only option. Like, I have 10 or so chronic illnesses which I can handle and manage, but last year and this year I was sick for 2 months straight with back to back infections. Strep, bronchitis, ear infection, flu, colds, stomach virus...all that WITH POTS, MCAS, fibromyalgia, chronic fatigue syndrome, IBS, GERD, and some other stuff...I lost my job both times. I considered filing for disability both times. I considered moving back in with my parents, who emotionally abused me, both times. Imagine being in CONSTANT fatigue and pain, and hardly able to eat anything, and underweight, and on TOP of that, you’re sick for 2 months at a time, and since I dared to take off work when I literally collapsed or would’ve collapsed if I went, I lost my job. It can turn someone who is otherwise smart into someone who is desperate. The people who buy into this stuff are often desperate. They have been to the doctor ALREADY and don’t have a diagnosis. Usually many times. Don’t have answers. Nowhere to go. Many people lose their jobs; some people lose their homes or marriages too. Some people can’t care for their children. The medical field pushes us aside because we are not “easy” to deal with and there are no easy answers. We suffer alone and then because we are vulnerable, we’re prayed on by people selling snake oil. We don’t need judgment though; unless you have been in this kind of a desperate situation, you can’t possibly understand how someone would fall for it. But I do.

It’s been so long since I’ve posted on here. I’ve had a lot happen. I finally saw a cardiologist and got diagnosed with POTS. I was put on several medications to control my symptoms which has been pretty helpful. Nothing has helped with my fatigue though. My doctor was hoping that the meds would improve it but we haven’t had any luck yet. At least my migraines are under control now unless I’m stressed (which is all the damn time) but I only get one now when I clench my jaw throughout the day. It’s a habit I’m trying to stop.

Unfortunately, I’ve been on crutches for eight months. After my hip scope in February, I was doing really well. I had my labrum repaired along with capsular plication. At about 3 months post-op, I started regressing. I went from one crutch occasionally to having to use two all the time. I cannot leave the house without crutches. I had a repeat MRI which didn’t show anything abnormal and another cortisone injection to help with inflammation but it didn’t help. We think I am dealing with instability likely because of the 3 surgeries + EDS. I’m not sure what’s going to happen next. I see my doctor on Thursday. I haven’t been able to work since December and it’s really killing me. I never imagined I wouldn’t be able to work for this long. I didn’t think my recovery would go like this. It’s so frustrating.

Hey! That’s me! For those of you who don’t know, I struggle with a condition called Ehlers Danlos Syndrome. I am so happy that my story is published and spreading awareness for EDS. Take some time to read if you would like ❤️ I’m so proud to be a part of a community with such strong, wonderful people. May we all continue to thrive and survive 💛

First week back at work.

WAS OFFICIAL HELL! I seriously wanted to throw shit and punch someone. Between this damn POTS literally causing my life to take a complete 360 and then I actually had people come up to me and tell to stop faking it to stop being so dramatic! I couldn’t believe someone would actually come up to me and say that. I’m still in shock and honestly I’m so angry. At this damn condition and people who can’t see what this does to me and tell me I’m faking it. Mind you the whole scene happened Tuesday so Wednesday and Thursday left me with no spoons left because I’m realizing that stress causes my condition to slowly worsen. Who knew?!? 😑 this morning we got a huge storm and I tried going to work and ended up in a snow drift which caused me to stress and I feel like I’ve ran a marathon so I didn’t go to work. Like I said this week has been hell. I’m struggling with accepting the fact that I can no longer move around like I used, I can’t go go go like I’m used to doing. The smallest things cause me to loose all energy it’s ridiculous. And people, god I’ve never met people who are so close minded that if they can’t see you being sick it’s not real. So I’ve had a week from hell how’s your guys going?

So I just saw (and reblogged) a picture of a  girl's  medical journey through out the past few years, she suffers from a form of dysautonamia. I am not an expert on dysautonamia, I have POTS which is a form of it, but there are many forms, I can only speak from my experience with POTS. I just wanted to say a few things real quick, this is the post I'm talking about; http://kittje.tumblr.com/post/99276998919/dysautonomia-awareness-my-adventures-with-heart

The first picture is her strapped to a table bed that's vertical, and to normal people that may look a tad bit silly, it is called the tilt table test, and that's how many individuals get diagnosed with POTS. It is completely awful, basically they strap you to the table an weight for your blood pressure to drop, and they pump you full of drugs to make it happen faster. I can't speak for other people's tests, but I got so violently ill while they were waiting for it it to happen that my mother had to leave the room and go to the other end of the hallway. I was only 13, and she had never left my side for any test before but this made me so ill that my mother could not stand there and watch them torture her child. It looks like an easy breezey test that will solve everything but it is horrid, and all it gives you is a fucking name. Not treatment.

The second picture is of her, Courtney, sitting up in a hospital bed with the back all the way up. This is quite relevant because to this day my bed that i sleep in every night cannot be level to the ground, it's propped up at the head so that my body wont have such a hard to adjusting from moving to a sitting or standing position

Thirdly is a picture of Courtney with what i assume to be a heart monitor, with POTS comes a lot of heart related issues and some POTSies need their hearts to be constantly monitored or monitored for a constant rate over a period of time

Fourthly is what i find to be the saddest picture and it is the last one I will be talking about. It is a picture of Courtney in Disney  World in a wheelchair because she couldn't stand without falling back down again. this picture is so important. You don't need to lose the ability to use your legs to need a wheelchair. They told me I might need a wheel chair by the time i graduated high school. Thankfully I'm doing much better than i was.

October is Dysautonomia Awareness month.

This illness is real and it is utterly life consuming. It's silent and hard to see but it steals away everything you love in life and there is absolutely nothing you can do to stop it. It makes you feel hopeless and it makes life not worth living.  I am so proud of each and every person battling this. You are so strong for holding on everyday. I am so proud of you for the things you do, little and big, to keep moving forward.

  please spread to word, there are a lot of people suffering that could use your help and support.

Being disabled means having to lie on job applications about having a disability, then when you do get hired, having to hide it as well as you possibly can and try your hardest to never ask for accommodations.

Can you ACTUALLY BELIEVE some people feel hunger...and then they just,, eat? And aren’t hungry OR nauseous....and they can do this even 3 whole times a day. WOW. #unrelatable