Thank you so much for all the sweet messages asking how today has gone. The last 6 weeks have been surreal. In the midst of great pain, I was continuously made completely aware at how blessed we are. How many people care that my family functions and eats and sleeps. The countless cards that arrived when I needed them most. I am still in awe of it and so so appreciative and feel so loved and taken care of. Thank you. Thank you.
So...Day 3 of no real pain. THAT hasn't happened in weeks...months, in fact...possibly years. I still get a shooting pain at times, or a dull pain for a few moments, but nothing that I can't handle. No anxiety today....and I hope never again. I did eat some bread today, which I typically have to avoid, but I always want to push a little too far. So far, so good. The real test will be at 3am. Not sure why, but that is always the telling time.
Another good sign. I actually got a few things accomplished around my house today. Not big things and most would think they were nothing. However, I have almost turned into my 8-year-old in that I find myself unable to function and staring off into the distance a lot. I just don't know what the next step to take is...sometimes its thru the pain and sometimes it isn't. It's a a feeling that my body can't do as much as I would like and it's telling me, "No!" and going on strike. The first thing I accomplished was getting my records transferred from the doctor in Houston to my GI doctor here. I fully recognize that UT Houston is the hubbub and all, but man, the patient care has been far from acceptable. From stuck in their office for 5 hours, to calling every day for 2 weeks to get the proper forms completed for my Humira and this week calling EVERY day to get a refill on my prednisone. I didn't want it, but you can't just quit steroids. I don't know if they are too big, if its the doctor, or the nurse. Either way, I want to run into Dr. Dural's open arms and tell him I am home again!
The next accomplishment, and it was an accomplishment, was getting the Houston doctor's assistant on the phone to instruct me HOW to wean off the prednisone. I know I am not completely ready, but I also know it will take some time to come off of it. I am tired of being irritable and puffy. So, as of tomorrow, I will start the weaning and it will take 2 months from the dose I am on now. At least the end is in sight!
The other good news is that transferring my Humira from our old insurance to our brand new insurance was as easy a pie! I called yesterday to initiate the process and they called today to confirm. I didn't have to do a thing. While I already have my 2nd round of shots for tomorrow in my fridge, the new dose will arrive next Tuesday, in plenty of time for Round 3. Even better, they confirmed that this ridiculously expensive drug will continue to be $5 each shot for the first year. I reluctantly asked what it would be if I didn't have this special Humira card and she said, "$35." Amazing. Kudos to our new insurance. I hope it lasts...
Here is to a good night's sleep...even thru 3am. Fingers crossed and prayers said, I am off to bed!
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