Gratitude: RA and an ex

It’s a 2 for 1 sale on the blog this week! While my last blog post was lengthy, the majority of it wasn’t about the gratitude I had promised would be the focus this month.  So, this is a do-over of sorts.  I’m really longing for a do-over in real life right about now, but I’m afraid that isn’t always possible.  I’m trying to reconcile myself to the fact that my past actions do have consequences, but in the meantime, I just need a place to vent my thoughts and feelings.  Therefore, though it’s an odd choice for something to be grateful for: this post is about getting RA and being dumped.

Obviously, if I could trade in either of these situations I would in a heartbeat.  I want neither of them to be true for me, but they are both at the forefront of my reality, so it’s time to make lemonade out of these lemons and discuss their usefulness.  While both being pretty crappy situations, both have forced me to count the blessings I actually have.  They taught me a tough lesson in not taking things for granted because you never know when you might lose something. In the case of RA, it taught me to not take for granted even life’s simplest pleasures, like the ability to walk pain free.  I am so grateful that the medications seem to be keeping my RA well controlled, so I may once get to experience these joys again someday.

Breaking up has taught me the same lesson.  It has forced me to take a good hard look at all the things my boyfriend had to offer that I had started taking for granted over time.  I mean, obviously many of them are just basic qualities one would expect a significant other to have(kindness, patience, attractiveness, intelligence), but that’s part of the problem.  I grew to just expect it as a given, but I didn’t fully appreciate it.  There were many times I would request he comply to a desire or need, and he would, but I didn’t thank him. Or I didn’t even acknowledge that he did something that was much more for my benefit than his.  And he did it to make me happy or to try to make life easier.  This was especially true after my RA diagnosis.

RA is a real jerk, and in turn I have been a real jerk because of it! It not only disrupted my life, but it also disrupted his.  We were both healthy, fairly active young adults prior to RA, but then I got sick.  My boyfriend and I used to often discuss health in both fitness and nutrition aspects.  He was more the workout guy and I was a bit of a nutrition nerd, pouring over paleo or keto blogs and reading cited literature to support it to see if it was really right fit for me.  I loved sharing  it with him if I found some interesting information on grass fed beef or the nutritional benefits of mushrooms or something.  He not only tolerated this passion, but he showed an active interest in it.  He especially liked when I would find out some good information regarding protein powders and find a good one to try.  I bought him one brand for his birthday, and he still likes to use it to this day.

He is very passionate about working out.  In my mind, maybe a little obsessed even, but hey I got to reap the benefits of having a man who took good care of his body, which I can’t complain about, right?  In the earlier days of us dating, we would often go to the gym together.  I was always more into swimming than any other form of exercise, and he was extremely accommodating about that.  We would often do a little weight lifting first, then I would go swim, while he lifted just a bit longer, and he’d join me in the pool  a bit later. When we first moved in together, he was recovering from an injury, so he wasn’t doing his usual Tuesday night soccer routine, but he still wanted some exercise.  There was a pool near our new house, so we would go swimming almost every Tuesday night. It was wonderful and as I look back on it, I remember those may have been some of the last days I remember being truly happy even after my brief pregnancy and its aftermath.  I think I often blamed my unhappiness on that whole situation, but now that I think about it, there were still flashes of joy so it wasn’t all depression.

I think we stopped swimming together around the new year, which is around the time my RA was starting to really bother me.  It still took me months before I got a diagnosis, but all I knew was that working out didn’t feel very good anymore, so I didn’t want to do it. I think this was a little soul crushing to my ex.  And I was too stupid and selfish back then to appreciate that he was more bummed about spending less time together than he was that I wasn’t working out at all.  Honestly, its taken me all the way up until this very moment in writing this to realize what a jerk I was about it.  I probably really hurt him and I didn’t even care.  Ugh! How did I screw this up so bad?  Not only did I hurt him by abruptly stating that I didn’t want to work out with him at all anymore, but I also got angry and called him a control freak.

OK OK….less self loathing…more gratitude!!!

He really was a wonderful partner and friend.  He was my rock when I was sick…much more caring and compassionate than I ever cared to give him any credit for.  We still wanted to be active and he tried to not show how much it bothered him.  He still tried to include me when I was unable to bike for a while, by suggesting we bring the dog along and I drive with the dogs while he biked and I’d meet him somewhere.  It was a fair compromise…more than fair actually.  He was completely rearranging his life for me and I wish I’d seen it sooner.

Recently, he started talking with me on Mondays about what we had done the previous weekend.  He said he’s been doing that kinda of reflection himself for a while.  He thought of me more that I even gave him credit for.  It was really sweet and thoughtful.  He would always ask if I thought the mix of time alone vs time spend with other friends was appropriate.

During many of our fights, he would suggest the best way to resolve our issues is to write a list of several things we are grateful for in the other person, and then a much smaller list (so, like 10 good vs 3 bad) or things we thought we issues that needed to be worked on.  Unfortunately, we never really followed through and implemented that plan on a regular basis though.

In addition, for our house, he took on a much greater financial burden than I did.  I make less money than him and so he covered the down payment, and I am paying half the mortgage plus a percent of the down payment back to him each month. Thus far, he has paid in full for some of the repairs needed, like electrical work, a new water heater, and a hear pump installation.  We were planning a kitchen remodel and he was willing to foot the bill for that as well until I felt in a better position to contribute to the cost. It was all very generous.

Even in this breakup, he is being exceedingly kind toward me.  As horrible and unhinged as I had become on Tuesday, I would not have been that nice to me.  He is offering to help me move and help me out with any money issues if I need to look for a place to move to.  (I don’t since I’m just moving in with my parents)  He even agreed to meet with me tomorrow to talk some more because I think he knows I am really struggling to come to terms with this breakup.

Its just a shame that I have learned to fully appreciate all of this just a little too late. If you are reading this, let this serve as a cautionary tale and reminder to make space for those you love.  Appreciate everything they give to you, before they are gone and it’s too late to fix things.  So, this really really sucks right now, but hopefully being dumped for my lack of gratitude will make me appreciate what I still have left.

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When it all comes tumbling down…gratitude!

I know my last post said that this month was SUPPOSED to be all about gratitude (and I promise I will still try to incorporate a little bit towards the end) but I’m struggling with it at this point, and I just want to make this blog REAL and HONEST…or else what’s the point of it.  Not to sound like one of those anti-depressant commercials that you see on TV, but most days in real life, I feel like I’ve had to wear a mask.  I don’t want my parents to worry, so I only tell them the good news about my RA, but don’t tell them about some of my lingering fears.  I didn’t want to disappoint my boyfriend, so I took a bunch of painkillers and hopped on the bike out of fear that the pain of my rheumatoid arthritis would impact my activity levels to a point that he would care less for me.  And it’s all driven me to this point….a breaking point where I feel backed into a corner and I just want to come punching and kicking and screaming my way out and say “THIS IS ME, DAMNIT!  This is who I am!  Love me or stop loving me, but I just can’t take hiding it anymore!”

The past year or so has been a complete dumpster fire! A (not so) brief recap:

At the end of the summer in 2017, my boyfriend and I decided to take the next step after almost 5 years together and move in together.  It was my first time living with a significant other, so I was super nervous but also really excited. Things seems to be going really well….for about the first month.  And then….well…something unexpected that I’m afraid caused irreparable harm to the relationship happened.  This is something that I fear I will deeply regret every single day for the rest of my life. To be fair to him, even I did not anticipate the depth of the depression and guilt that I would feel, but I had hoped for a little more compassion that the decision would be a so difficult for me, both emotionally and physically.  I have never been suicidal, but many days I felt that I don’t deserve to live after what I had done.  This may seem like an extreme reaction and perhaps it is, and it was one I was ill prepared for.  It was something that I never told a single other person about.  He was the only one who knew, and therefore the only person I could trust to understand these feelings.  And it felt like a betrayal, when he just pretended like it never happened. It felt like a further betrayal when he failed to follow through on the steps he was supposed to take to help put my mind at ease about the situation.

In January, my symptoms began to make themselves more pronounced.  Joint pain went from “ok, I just slept weird” to ” hmm….something strange is going on here.  I don’t think this is normal.” It was enough that it inspired me to take the first food sensitivity test to look for a possible culprit to my pain.  Looking back, I still sometimes wonder if all the stress of the previous autumn were in some way linked to my onset of RA. I’ve read many accounts of trauma triggering an autoimmune disease, so if a car accident can trigger it, than I’m almost certain that an unplanned pregnancy and then being suddenly not pregnant anymore can certainly do it.  I mean, the rollercoaster of emotions between guilt and relief alone could probably do the trick, but the crazy hormone changes that the body goes through, first by getting pregnant and then in response to the demise of the fetus are not to be dismissed.

Also in January, my grandfather passed away suddenly.  On Christmas Day, he was going to a friend’s Christmas party, then by New Years he was checking into the hospital.  I never expected that he would never check out and go back home.  Then, at the end on June, I got news that my other grandfather had passed away, less than 6 months between them.  Two great men, just gone from my life during a time full of uncertainty.

Next, came my diagnosis in July.  And with it, rather than total relief or optimism that I’d finally start to get the treatment I needed, I felt more guilt.  Guilt that my boyfriend wasn’t getting the active girlfriend he thought he was moving in with.  What if I didn’t get better?  We had just moved in together and I got the diagnosis on the one-year anniversary of our closing date.  This wasn’t what he had signed up for…an invalid for a girlfriend.  At a time when I should’ve been focused on my own health, I was worried that my boyfriend wouldn’t want to be with me anymore.  Up to that point it wasn’t as if things were going swimmingly in our relationship either.  I’m not great at adjusting to change, and even though moving in together was something I wanted, I’m a weirdly private person and now it was impossible to hide my weird little quirks, like my embarrassing Netflix queue of sappy romcoms or the stupid goofy games I obsessively play on my phone or my cookbook hoarding habit. Instead of embracing it and trusting that it wouldn’t change his feelings for me, I got nervous about him finding out.  I remember more than once, he would ask about what I did on an evening that we didn’t spend together, and I got instantly defensive and secretive about it and said “Nothing! Geeez…why do you have to know so bad, you control freak!”  Truth: I binge watched some episodes of a CW show or played games on my phone all night long or danced around and lip synced in the living room while blasting the Guardians of the Galaxy soundtrack.

I’m not saying he was completely blameless either.  He had some expectations of me that I felt were a little unreasonable, like a quota on how many times a week he felt we should be having sex (way to suck all the romance and spontaneity out of it).  And he wasn’t always perfectly compassionate.  Before my diagnosis, he made a comment on how I wasn’t really working out any more.  Earlier in our relationship, I used to go with him to the gym, but as my hands and feet started to hurt I was less and less into it.  I know it disappointed him, but it wasn’t exactly my fault.  He asked what my new fitness routine was, and I angrily shot back “Right now I’m lucky if I can walk to and from work without pain”  Then he shot back that I needed to come up with something because otherwise I would get fat and he couldn’t see himself with someone “not fit.”  It was hurtful!  I didn’t choose to be sick, and I was trying my best to overcome my depression, but I felt like he was suggesting that I somehow planned this disease and its onset to happen after we were living together as a means to trap him! Again, this was before I knew what was wrong with me and how or if I could get back to normal.  And the tensions kept mounting and the rift between us kept growing.  We’d fight more often and every time we did, he’d throw in a subtle or not so subtle suggestion that we break up, like “Things won’t work out unless you……”  I got really defensive every time and just shut down or exploded in anger at him, which never helped the situation.

Finally came today.  A brief background:  I grew up and live in a very liberal area of the country, and have always tended to lean a little more moderate-conservative. Being election day, I put a 24-hour temporary profile picture up that said “I voted Republican.” Being someone in a liberal echo chamber, I often keep these opinions to myself to avoid debates that never tend to lead anywhere and in my experience have always results in name calling, but everyone else so proudly declares that they vote and also proudly declares how they vote, either online or in daily conversation, so why can’t I just because my opinion is a little different?  I’m just as proud of my choice and the hopefulness it brings me for freedom and I didn’t want to continue to hide it.  My boyfriend was not happy, and he took it as a personal attack on him and said my posting it endangered his relationships with others.  It felt like the ultimate betrayal.  I trusted him to know me and love me for who I am, and encourage me to feel comfortable about it.  I’m tired of hiding everything….my pregnancy, my illness, even this blog- a blog that no one in my real life knows about, including him (I planned it that way because I felt like I could be more honest with strangers that if I knew my audience and was worried about how they might read what I was writing).  Instead, I felt like he was controlling me and censoring MY facebook profile and MY opinions because of how it made HIM look. So I erupted in a series of angry texts back at him.  He asked to meet for lunch to discuss.  When we did, I erupted even more.  Eventually, when I’d lost steam on my tirade, he said that he was sorry but that our relationship was over!  So there it was: a 24 hour facebook profile pic was the straw that broke the camel’s back.  I feel so many things right now: angry, devastated, remorseful, and confused!

On some level, things with us haven’t exactly been healthy for a while, but then on the other hand, I’m finally starting to get a handle on my RA symptoms and I felt like things with us were starting to improve.  Two days ago we were talking about going to the store to start planning out cabinets and countertops for a kitchen remodel in our house.  And last night, we had just gotten a new comforter for our bed after struggling with a duvet that was always spilling out of its cover because of a few missing buttons.  I was really hopeful that we were going to be able to put all the bad things in past behind us and start to look forward and hopeful for a festive holiday season where we could finally get a reprieve from all the past year or so’s troubles. It felt like we were this-close to re-establishing peace in our relationship and if we could come out of the other side of this year, maybe a little battered, but still intact then we’d have the strength to get through anything together.  But I guess all of the setbacks of this year took their toll, and now I’m forced to find a time to start packing up our shared home and move back in with my parents.

So, I said I would end this post with gratitude, since that is supposed to be the theme of my posts this month.  It’s really hard to feel grateful for much when the man you love just gave up on you and broke your heart, but I am grateful that I do have other people that are in my corner.  My parents are loving and kind and will welcome me into their home to stay as long as I need. And not having to move into an apartment alone is probably good.  My parents will be caring and compassionate that I’ve just probably lost the love of my life (I know most people say that, but even though we’ve been together for about 5 and a half years, our story goes back all the way to the fall of 2000, so it feels like 18 years of my live—my ENTIRE adult life– has just fallen apart) but will also be the tough love I need to try to navigate moving on.  I don’t have a particularly large friend group, but the ones I do have I know love me unconditionally.  Even one of my friends, who I know disagrees with me on all aspects of politics really came through for me today.  I’ve been able to come clean with those people about last fall’s pregnancy and its aftermath and they’ve all been overwhelmingly comforting and supportive in ways I hadn’t expected. Now I only wish I had told them sooner, so I wouldn’t have had a year of self loathing over the whole thing and guilt about hiding it from everyone.  They were understanding of my reasons for wanting to keep it private and were truly there for me.  And will truly be there for me going forward.

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Progress? and new results

After purposely falling off the wagon with my diet restrictions, I also have fallen off the wagon with my plan to try to document and post on my progress.  I continued to eat my way through the list of 88 foods, getting through the majority of them or at least making sure to eat the things I was most curious about. While some of it was kinda gross (like eating a teaspoonful of spices right out of the jar, just to ensure that I had them), most of the foods were consumed in regular meals.  The fun part about this is that I got to hunt for some new recipes that would incorporate as many ingredients on my list into one dish, and I had some delicious meals along the way, such as this wonderful salad and Rachel Bryant’s (meatified.com) AIP Beef Stew (meatified) with turnips and beets added (as seen in this recipe.)

I finally pricked my fingers and sent in my blood a few weeks ago and I have my results back: Results of the Expanded Food Senstivity Test.  In retrospect, I probably should’ve waited until I had fully tapered back off of the prednisone before taking this test, as I think my results are likely altered by the fact that I was taking an anti-inflammatory corticosteroid when I collected my sample for this test.  So, sadly, I’m not so sure these results will be quite as helpful as my results from the food sensitivity test I did back in January.  This one may be worth re-testing at a later date, once I am off the prednisone.  But, I suppose it is good to know that nothing else shows up as “highly sensitive” from this new list of foods.  So, either the medication is working THAT well, or I’m really lucky that I’m only highly sensitive to two foods.  So, I guess that’s a bit of a silver lining, right?

I also had blood drawn earlier this month to recheck some of my inflammation markers.  There’s actually some very good news there.  Both my sedimentation rate and the C-reactive protein levels have dropped into the normal range!

A note on the ranges for the medication:  I tapered up methotrexate over the first few weeks, starting at 10mg the first week, 12.5 the second, and then 15mg the third week and beyond.  As of two weeks ago, my rheumatologist has now bumped my dose up to 20mg/ week.  For the prednisone, I took 10mg, for about 4-5 days, then dropped it to 5mg/day.  I am currently still on 5mg/ day for another few weeks, after which I will drop my dose down to 2.5mg/ day for 4 weeks and then stop taking it altogether, unless needed for a big flare up. 

I also had a comprehensive metabolic panel and complete blood count with differential done at the same time to make sure that the medication wasn’t wreaking havoc everywhere else in my body in order to decrease my inflammatory markers.  Those levels were all about the same as my pre-drug levels, so so far, so good.  Additionally, for the most part, I haven’t experienced any major side effects from the prednisone or methotrexate. My next blood tests will be in December, so I’m trying not to count my chickens before they hatch, but I’m really hoping that I’ll be lucky enough that methotrexate is going to be enough for me to halt the progression of this disease and keep it well managed, and then I can turn my attentions to the natural approaches like diet and lifestyle to really live a life where rheumatoid arthritis isn’t a daily concern.

On a less sunny note…..

That said, despite having pretty good news as of late and having lots to be hopeful for, I am human.  I have to admit, that I am still very prone to worries and doubts.  I have tried avoiding the facebook groups I joined because I just feel like there is an imbalance in the ratio of stories of pain and suffering vs stories of hope and success.  One of the main reasons I started this blog is that I wanted a space to share my story without going onto social media and seeing all the awfulness that could still become a reality for me.  Also, while I do try to share my story in my facebook groups as a hopeful voice amidst all the suffering, I also feel a bit guilty: like positivity is like gloating or rubbing it in to those who are less successful.  At least on this blog, I am staying in my own lane, and if someone wants to find a hopeful voice I hope they find me. However, if they want commiseration, they don’t have to see me gloating about my success.

Despite all these efforts to avoid negative influences, the thoughts still creep in from time to time.  One of the reasons, I haven’t written much this past month is that I have been on a bit of a rollercoaster, both physically and emotionally.  Purposely eating foods that are out of the ordinary or are suspected to cause inflammation for me obvisouly caused a few flare ups of inflammation.  Even though the prednisone and methotrexate kept it at bay for the most part, it was still enough of a flare to feel that something was a little “off” when I ate a “bad” food.  But since nothing showed up in any of my bloodwork, I’ve been a little naughty about allowing myself to eat things that I know I probably shouldn’t be eating.  I’ve been believing the numbers in the blood test over how I’ve been feeling, and I know that is not the best course of action.  I have slowly been feeling some of the swelling and pain coming back more frequently, so I really do need to get back into my healing naturally regimen and quit relying only on the medications to do all the work for me.

Of course, with these flares, instead of the logical approach of “Well, I did eat cheese on that burger yesterday instead of asking for no cheese, so that’s probably why my feet hurt this morning,” I immediately go into “Oh no, the meds aren’t working after all!!!” panic mode.  It’s thrown me for a bit of an emotional loop, with some physical manifestations as well such as a recent uptick in the frequency of getting migraines (though that could be partially because I have also backed off on taking so much magnesium after a few episodes with …we’ll just leave it at “bowel movements” so as not to be too TMI about it).  I was reading The Wahl’s Protocol, as well, and Dr. Wahls describes that her M.S. medications worked great at first, but then they stopped being as effective and the disease progressed rather quickly.  It’s hard to not worry that that can happen to me, which is why I still feel that despite the medications seeming to be pretty effective, I still want to supplement my healing with a healthy diet.

I’ve been going back and forth about how I want to process these negative thoughts, and what direction I want this blog to take.  I want to be real and honest that they happen, but I don’t want to wallow in self pity and devote full posts to feelings of doom and gloom that will (in writing them) ultimately make me feel even worse.  So for now, I think I will try to process the details of these negative thoughts more privately rather than exploring them too openly on this blog, but I will also try to openly acknowledge that I’ve had a rough week if I have.

On that note, while the past months has had some ups and downs, and as we are heading into November, the month of Thanksgiving (in the United States), I want to try to devote my next few posts to gratitude to really try to help myself get back on track emotionally as I also try to get back on track with my diet.

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Fell off the Wagon…well sorta

…More like “stepped off” than “fell off”….

I’ve mentioned that I took the Everlywell Food Sensitivity test prior to my RA diagnosis.  (full results here) Well, last week, I got an email that they have a brand-new Expansion Test, that tests 88 new foods (although kelp was on the first one, so it’s really only 87 *new* foods) So, I, of course, ordered it.  However, as I have been avoiding all cheeses, this meant that I needed to start eating cheese again (heartbreaking, I know, right?) so I can test for sensitivities to the new ones.  I’m obviously keeping out mozzarella and cheddar since I already know those are sensitive for me, but this week, I’ve had feta, mizithra, and blue cheese.  There’s also a marker for swiss cheese, so I want to may sure I get a bite of that in before I test as well.

Here’s the full list of markers on the new kit:

Most of the food I don’t really need to go out of my way to make sure I eat. For example, zucchini, cilantro, and limes were all in the soup I made for last weekend’s tailgate. Tumeric, cherries, beets, and carob are in the Shavasana Veggie Vinyasa and Protein Choc’ra mixes that I drink a few times a week. So, it’s mostly just cheeses and and foods that I can’t specifically remember eating in the past month, but I really want to make sure they are ok that I’m trying to make sure I eat before I test that I’m focusing on.  However, since I’m eating cheeses again (and I’m likely to be sensitive to at least some of them) it’s been a bit of a rough week.

It also doesn’t help, that I accidentally ate some almonds again at the tailgate last weekend. Without even thinking about it, I just dug right into an Asian Chicken salad without thinking to check it for almonds.  I only took a bite or two before I realized my mistake and then painstakingly quarantined them to the edge of my plate before finishing off the salad.  In all, I’d probably only eaten about one or two whole almonds, but it was enough to cause a small flare.

While part of me is enjoying being less restricted, the other part is ready to going back to what I know kept me flare free.  The only downside to that is that of all these yummy foods I’ve been able to be non-compliant with this week, at least one is causing a sensitivity, so I’m afraid of how many more foods I’ll be quickly adding to my restricted list.  I’m hoping that it’s just the cheese and not something else.

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