***If you haven't read Monday's post yet, please scroll down and take a look and consider joining me for the Take Steps walk on Sunday!! Thanks so much!***
Unfortunately... I've been having a LOT more pain since Monday night. Hurts incredibly bad even to breathe (the Rheumatologist checked that out last week. Apparently even the muscle walls in my chest and the cartilage in my ribs and sternum is all inflamed. Yuck. But at least it's not my actual lungs that are inflamed! Could be worse!). Anyways, I talked to my pusher... I mean, the Pain Dr... yesterday. We've upped my meds again to see if I can get the pain under control again and be able to sleep. He was just like... "I'm really, really sorry... take more drugs and hope the weather stops changing." ;) I'd really appreciate prayers for relief/endurance. I am just pretty miserable. For the record... feeling stoned is only fun if you feel stoned and NOT in pain. Otherwise, it's not worth it, haha!
I saw the Endo Dr again today. She is smart, nice, listens, and I really like her - a tremendous improvement over the Endo NP and Dr I was seeing!! Over the past few weeks, we've had to increase my steroid dosage several times because of the adrenal crisis episodes. So now I slowly (over months) have to try to come back down to a "physiologic level" (the level my body should be making - right now I'm on about twice that much) again. THEN, if that goes well, we can do testing to see if I can start trying to very slowly taper completely off. I can't even imagine how long this is going to take... she is talking up to three years, ugh.
A big concern is keeping me more stable. We created a plan for if/when stuff goes bad: when I dump, I am supposed to immediately double my steroid dosage. This is so that hopefully I will absorb enough steroids to prevent me from hitting another crisis. She wants to be more proactive about keeping me hydrated and keeping my heart rate normal. So if I can tell I'm headed in a bad way, I'm supposed to call her right away. She's made arrangements for me to be able to come in and get an IV in the infusion center in the clinic. That way, I can get prompt treatment and avoid hitting the full blown adrenal crisis and extreme dehydration.
Finally, she is emailing all my specialists so they can put their heads together on what my issues are, what's causing them, and what is the best way to manage everything. I think this is a very positive move, and hopefully will result in some answers and less fragmented care.
I did round #2 of Humira, my superwoman shots! Only side effects are that I am turing into a superhero and that I had to clear off a shelf for the sharps container. ;P The shots burn a bit and I get a little headache afterwards, but it's nothin'! I really honestly think they are already helping! SuperPouch (Twitchy's alter-ego) is still uncomfortable, but I'll take a little discomfort over constant pain and bleeding! My joints are also less stiff, so hopefully soon the pain will decrease as well. Pray that Humira kicks in and puts the pouchitis and arthritis and inflammation in its place!
Since Humira is supposed to be taking effect, I'm coming off the meds that have kept the pouchitis under control since March. Please pray that I will NOT flare as I taper off these meds!
Also, could I ask you to please pray for my family? My grandma has Alzheimer's and is having a very rough time right now - she is extremely upset and agitated... to the degree that my mom and I had to take her to the hospital on Wednesday. She'll be there for several days as they try to find the right combo of meds to calm her down. Pray that they can find something that will allow her to be safe to herself and others without being zombified.
Thanks for your prayers! I truly appreciate them!