Stop Taking Your Health For Granted

Title is a little harsh, huh?

Let me start with the good – my ulcerative colitis SEEMS to be quieting down. I say seems because I could be jinxing it. The last two times I received Remicade they bumped me back up to the maximum allowed dosage and the plan is to stay there permanently (and fun fact my insurance has me currently owing $48K for those additional doses LOL). I think it is doing the trick but TBD when I do my next scope on the reality. 

The bad is that my rheumatologist was convinced that the arthritis was an offshoot of my UC flare but my joint flare ups are on the daily still even with the UC symptoms lessening. They started me on an additional medication but effectiveness can’t be determined for 1-3 months. YAY. Until then this is what you can expect my hands to be looking like most days. It hurts. A lot. 

#notnormal

Maybe harder to notice the puffy right knuckles

I worry that I am in my 30’s and keep seeing that the longer you have arthritis inflammation the more damage will be done to your joints. For vanity purposes, I have nice hands, I don’t want warped fingers any time soon. 

Now to the title. I go back and forth with being frustrated by being “sick”. I didn’t run my 50K on 10/1 because I was exhausted from work travel and my body just felt like crap. It was the right decision. But that doesn’t stop me from wanting to be able to do these things. I get so annoyed seeing people treat their bodies with no respect, be excessively overweight, smoke, eat like crap and yet they don’t suffer the same repercussions. 

I am still active in spite of my “disease". I’m still running 40ish miles a week. I’m going to bootcamp. Now joined OrangeTheory (#obsessed <— and yes I just hash tagged). But I don’t FEEL great the majority of the time. I do it because that is my definition of normal and what I enjoy. I will not sit on the couch and feel sorry for myself, ever.

I gave up meat and dairy from July until this week hoping for some magic pill. I wanted going plant based to have some sort of effect on me physically. It did not. (also once I am in remission I will probably try again because while it didn’t help my flare – I was so far gone and my deficiencies so bad it may not have been the best trial period).

I am slightly type A (okay 100%) and I want to be able to fix myself. 

When I was obese I had a come to Jesus moment and was like hey being young and fat is awful and I want to live a full life, so let’s get this under control. Boom, started counting calories and working out consistently and lost weight.

The UC, the arthritis, they are out of my hands and it annoys me to no end. I cannot fix myself no matter what I do. I am thankful for modern medicine but often will question the why. Why can’t someone who throws their health around and doesn’t take care of their body deal with this? Why does it have to be someone like me that wants to compete in endurance sports and push my boundaries physically? Why can’t it be the person not wanting to take care of themselves physically that has a chronic disease (x2)? 

That may sound god awful mean but that is what goes through my head when my feet hurt when I take that first step in the morning or it hurts to hold onto a dumbbell. 

So PSA be grateful for your health, please. If you are treating your body like crap and are “fine” count your blessings and pray that it doesn’t one day catch up with you. I alternate between wanting to be healthy into a ripe old age and worrying about how a chronic illness will play into living into said ripe old age. Unless they find a cure I don’t have the luxury of never having to worry about my health. 

From Bad to Worse...

So yesterday I had the most fun day off from work ever.

And be warned may be TMI in here, but TMI is my life these days :)

Tax fun in the morning which took entirely too long for a simple return.

Followed by needing to prep for another procedure (flex sigmoidoscopy) and then the procedure itself (similar to a colonoscopy but less invasive and no sedation).

And not eating until 5pm which was definitely the hardest part for me! Don't deny me food. Ever. 

I had been waiting for my doctor to return from vacation the past couple of weeks to finally get this done as things have progressively gotten worse.

The fun part of the procedure was that I was awake this time and got to watch the camera output. The former pre-med student in me found it interesting and you know something to focus on instead of what was going on.

Basically things are now labeled “severe” as a result of what he saw.

And my doctor is yet to distinguish if it is Crohn’s or Ulcerative Colitis. My colonoscopy had him 90% at Crohn’s but based on yesterday more symptomatic of UC. The gist of it all is that treatment is not working and also he said based on seeing this (he didn’t do my initial colonoscopy he is going on another doctors findings) there is no way in hell that Asacol would have put me into remission.

Things have managed to go from bad to worse in the meantime while the anti inflammatory meds are not working. 

So as of now I am on prednisone – I wanted to avoid steroids (because, vanity and knowing some results can be unpleasant) but I will really do anything at this point.

I will be going back to him next week with hopeful improvement. But if things don’t start to get better soon, he wants to discuss going on remicade (IV infusions every 8 weeks or so) which again not thrilled about but it is what it is.

I am on more than 5 months of this flare and kind of want my life to get back to some sort of normalcy. I am no longer woe is me but it does kind of suck to feel shitty most of the time.

So here’s hoping that I don’t get a puffy face and acne, but that my gut does start to heal itself and stop bleeding. And not worrying about where every bathroom in NYC is located.