My #7daysofIBD – Day 2

“I woke up like this!” . . . literally. Anyone else have a crazy alarm system?

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I haven’t been sleeping well this week and woke up late yesterday. Decided to go back to my old alarm system when I was experiencing a flare, and yes I still hit the snooze. Goal is to be up by 6:30am. Without these alarms, on a bad day it would take at least an hour for me to get out of bed. . . severe fatigue is no joke.

I know  its supposed to be one photo a day but I had to share my experience at Bed, Bath & Beyond last night. I’m traveling to Texas for the weekend and had to stock up on my poo-pourri. BB&B is the only place I know that sells it and I almost had a panic attack. I could not find any bottles!! My anxiety hit 100 knowing I will be traveling and possibly using many public restrooms this upcoming weekend . . . until I saw something familiar.

They only had 4 bottles?!?! This has to change, but happy I was able to buy one!! #winning #littlevictory

Hospital follow-up with GI . . . .

I saw my GI on Monday for my post hospital follow-up. I think my GI is a hard working man, he looked just as tired and stressed as i was or maybe because it was an 8:00 am appointment? 🙂 Anyway, he reviewed my clinical summary from the hospital and was surprised that the hospital GI removed Apriso from my medications.  Since it was the only mesalamine medication I was taking, he stated we will need to put you back on that medication.  I immediately asked why since the GI at the hospital stated it didn’t work. He responded, “I think you have Ulcerative Colitis, and you’re currently taking 40mg of prednisone, I want to get you off the prednisone sooner than later.  We need to do a trial and error and find your long term drug.” So far 2 out of 3 say I have UC , I feel like I’m getting closer to a confirmed diagnosis, yay!!

Then we talked about future treatment. He brought up Humira and  Remicade again, but stated he wants to try an immune modulator instead. In the meantime he wants me to get tested for Hepatitis and see me every week?!?! I said “What!” He said we have to tackle this head on, I don’t want you to go back to the hospital.

Sighs . . it’s bittersweet. I’m fortunate to have a GI that cares, but my PTO hours are getting low. And I can’t afford these co-pays, but I am getting closer to my out of pocket maximum with Cigna!! So once I hit that amount it should be easier? *fingers crossed*

As always I remain hopeful, taking one day at a time 🙂