I’m Famous! Or Atleast My Dr Says So..

Being the topic of my doctor’s, as well as all the other top GI doctors in Boston’s, “complicated patients conference” I’d like to call it I didn’t know how I should feel about that.. (But it does pretty much mean I’m famous 😀 ). I guess in some ways I was relieved for him to actually admit I have a complicated case after failing more meds and treatments than I could count on my fingers and toes. I met a doctor fromImage Ireland working at The Brigham and she was really good. I know my doctor struggles and he tells me sometimes he doesn’t even know what to do or why something is happening but it was nice to feel as if someone else was concerned and genuinely interested. As you all know I’ve been feeling good. Well, that is about to end. In order to be entered into the clinical study I have to have a Harvey Bradshaw score of at least 5. Which in short means, I have to be pretty damn sick. They measure this by your symptoms and the severity of them. My HB score right now is zero meaning I am in clinical remission. My doctor decided to rapidly wean my prednisone dose. This is bittersweet for me. This in fact means, I will get my skinny face back… But, I will also get back my overly skinny body, exhaustion, fatigue, potty emergencies, nausea, and just plain ole feel like crap. I am not looking forward to this to say the least. But, like I say it could always be worse. And if trying a new treatment that may potentially make me feel good means feeling like crap for a little while well, then I’m down. Gotta give a little to get a little.

I’m going to be all over the map on this post because my heads been all over the map lately. Tonight’s got me thinkin’. Thinking back to my relationship post. Trying to have that mindset now. But there’s something different everyday for me. Yesterday it was my back, today I was really feeling my kidney stones.. How the hell is someone going to deal with me haha. Really though, god bless them! Hopefully I’ll find it someday. But, it’s hard enough to even get a date around here with a decent guy. It’s so frustrating! Never mind I have to try to explain myself and why I don’t go to school and just work at a froyo shop and a local vodka company. Sick girl probs at their finest. It’s hard to separate other reasoning why someone doesn’t want to be with you or why something doesn’t work out from just the fact I’m sick. I’ve had people who couldn’t deal with it and now it’s the first thing that I jump to when something doesn’t work out. I don’t know why but that’s what I do. Right now my face is about twice the size it normally is (hence “moonface”) and meeting new guys is terrifying because I think everyone can notice, even though they really probably don’t. I just relate everything back to it which I shouldn’t do but everything else just sounds like an invalid excuse to me. Dumb.

But besides that whole issue, I’m pretty nervous to get sick again.. It’s hard to keep up with work and now that I have my own place I have no choice I need the money. At least I’ll be some what prepared. But on the other side of it, it’s hard when you know you’re going to get sick. The anticipation is there and it’s just digging at me. I feel like all of this is completely pointless because in as little as a few days I could be barely able to function. I definitely am going to take advantage of every day I feel good right now though. I think it’s hard for other people to understand when I say “I’m going to get sick”. One of the blogs I follow put it perfectly when she said we don’t get sick like you get sick, with a cold or with the flu for a week, it’s not like that. We get sick where day to day activities are almost impossible to complete for extended periods of time. We do a damn good job at hiding it too because Crohn’s is also known as an invisible disease. This phrase, “invisible disease” is evil. The kind of evil you never want to run into. You can be the most beautiful person on the outside, and physically suffering on the inside. We are often mistaken as hypochondriacs or “fakers”. Noone truly understands the disease because they can’t see how sick we are by just looking at us. We can throw a pretty outfit andImage a nice smile on and no one would ever know. So much is still out there we don’t know about this disease. There’s still so much more to solve. 

I’ve stocked up my fridge with powerade and homemade soup in order to get ready for when it’s time for my HB score to reach a 5. Yes, I’m excited for the trial but in the same breath I can say I’m not ready to get sick. I’m not ready to give up this energy and this good feeling I’ve been feeling. It’s just another day in the life of a Crohnie. I might be getting more and more “famous” in the IBD medical world due to my complicated case, but I’m still your average tweny-one year old girl just trying to carve her path in life and find someone along the way to hold her hand while she does it.

 

-xo Michelle

 

5 thoughts on “I’m Famous! Or Atleast My Dr Says So..

  1. When I was first getting diagnosed and having loads of tests I was also famous among my local medics 🙂 I felt honoured, however being a complicated case is no fun, especially when you’re trying to find out what is wrong with you… Apparently my symptoms didn’t quite match up to Crohn’s symptoms, I had the pain, the weight loss, the fatigue, the fevers, but as far as I was concerned my toilet habits were relatively normal so for a while they questioned whether someone with normal bowel movements could even have Crohn’s… Turns out they can apparently 🙂 though I know this won’t last, as time goes on it’s all going to change.
    Don’t worry about the relationship thing, the right person will come when they’re supposed to and they’ll be able to handle this disease and all it entails and they’ll take care of you and love you no matter what, so don’t worry 🙂
    And good luck with your new treatment, I hope it all goes well and you’re not sick for too long!!
    Xxx

    • I agree I have been a complicated case my whole life being handed off to doctors because “they can’t help me anymore” it is so frustrating! But finally my doctor is willing to try whatever he can! I’m in no rush to get into a relationship I know the right person will come along it’s just hard not to think somestimes about it all! and thank you so much! Hope alls well with you too!

  2. Don’t stress about the moon face. There is a large chance that you look “healthy” with the moon face rather than the super skinny face we get when we get sick. Best wishes to you in that you aren’t sick for long and that the new treatment works fast!

    • I know, for some reason my moonface has been the toughest to get over haha it sounds silly but I’m just afraid I’m going to go back to how I was 2 years ago after 9 months on a ridiculously high dose of steroids. I gained 20 lbs and on a 5’0 petite frame it is a lot! Especially when you can’t lose it no matter what you eat or the exercise to do. But, I’m dealing with it okay this time it’s def not as bad! Thank you!! 🙂

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