What I have to write makes me so happy bc it could possibly mean a change in my future health… for the better. When you live with chronic illnesses, you have mini plans, mini goals, but I’ve stopped looking far into the future bc who knows what’s going to be an option then? This may all change for me soon.
I went to my GI appointment to see them after having my Crohn’s Disease flare, and after re explaining to another GI about that band of tight pain I was having (made me feel like someone was squeezing trying to break my ribs) he wants me to get a small bowel x-ray done. Which is what the GI surgeon wanted done at Napanee Hospital, but Belleville Hospital didn’t do, then the GI’s wanted it done when I was admitted into Kingston but they ended up only taking a regular x-ray, which only took basic shots. So I am actually having the test done now bc he thinks there is something going on between where my stomach ends and the bowels begin. He didn’t put me on my remission drug. I’ll be back in a month with the test results by then to see what will be done.
THEN I went to my Cardiologist appointment, whom I’m happy to say had an intern with him learning about Postural Orthostatic Tachycardia Syndrome. So I brought with me the discharge sheet from when I left the hospital after my flare so he could be caught up on the crohn’s happenings, and he thinks that after talking with some colleagues about my case, and he is positive now bc my blood pressure went back to normal when my crohn’s calmed down after the flare, that it’s the inflammation from my crohn’s causing my pots. He’s not 100% sure of course until we get it under control, but he thinks that this and the inflammation (which makes your cholesterol higher too by the way) is the reason why my pots came out in the first place. (pots has become disabling since my first yr after being diagnosed with crohn’s). Inflammation plays a major roll with your heart, and I was reading that in a book about controlling your cholesterol, but never put two and two together, except to think my crohn’s may worsen my chances of lowering it back to normal, when in reality it’s probably the reason it’s high to begin with. So basically overall, if his assumptions are correct, and I don’t want to get my hopes up, my pots could technically disappear altogether, or at the very least, become significantly less of an issue for me. I might actually be able to have a job, a future… a quality of life. Something I had basically given up any major chance on happening. To think the one chronic illness I have that could be making me so sick… is the one I never thought twice of this entire time bc I never realized what an impact it could be having on the rest of my body. Craziness…
I had an OT assessment done this week as well. The girl seemed really cool and really understood pots from how I told her it affected me personally, and she was really cool and wanting to help me get help for around the apartment as best as she can. She’s going to come by at the beginning of next month and take a look at the new place, and see what all she could do there. I’m just waiting to hear back from the housing coordinator if it’s cool with the landlords if I install some grab bars, etc.
Anyway, wanted to share the great news with everyone. I’m really pumped about getting the small bowel x-ray and seeing what it has to say and then continue treatment from there. It’s nice to have a bit of hope again