Just updates here.
It turns out that people with disabilities can have gallbladder problems too. No surprise to us, but to some doctors... I'll be having my gallbladder out next Thursday and a liver biopsy at the same time. So my abdominal pain is about to end. Tell me, why is it women (the urgent care doc and the surgeon) listen and do the right tests and a lot of men (internist and ER doc) just think we are just inventing issues?
I ended up at the urgent care clinic on December 19 with continuing abdominal pain and fever, was able to get a HIDA scan on Christmas Eve, then have had the usual delays in getting results and appointments because of the holidays. The urgent care doctor was excellent--very sharp--and I wish did primary care. One piece of not so good news is that she thinks primary biliary cirrhosis, an autoimmune disorder, is a possibility for me, and she said that's serious and not really treatable (not quite true). She impressed on me the need to see a GI specialist, but the earliest appointment was a month out from that day, with any biopsy to be done later. With the gallbladder issues concurrent, the surgeon can take care of the biopsy so I don't have to do it separately and much later (that appointment will be moved back because of surgery recovery). The rheumatologist knows about all this (he had been urging me to see a liver or GI specialist) and has ordered the antimitochondrial antibodies test.
The cardiologist agreed that my blood pressure issue is not from a general cardiac problem but rather from gallbladder or from the steroid injections the week before. It measured low in his office (vindicated). We can try something to bring it up if we need, but neither of us wants to add anything new to the mix. A small amount of atenolol's still necessary for the heart rate.
I haven't really wanted to deal with discussing the liver issue so have just kind of shut down for a bit in terms of blogging and talking to others. Although this could account for all the other autoimmune issues I've been having as well, I remain hopeful that removing the gallbladder will drop my liver enzymes to normal and that maybe everything else is fine or an anomaly. I have gone off all drugs that metabolize through liver except 1 to 1 1/2 doses of hydrocodone a day (at 10/325, that's about one tylenol for the liver) and have gone back to half an atenolol most of the time. I even went off Zyrtec-D, which in the past I would have fought tooth and claw for if I were in some survivor-like apocalyptic situation. I'd still like it, but...my liver counts are high. In an unfriendly way. And Nexium and arthritis drugs. Frankly, I'm feeling a little desperate when I consider lack of pain control options for the long term. As long as things don't get worse and I can take something, use the scooter, and get adequate help, I can do okay.
I also had a rhizotomy on December 23, which the pain management doctor agreed to do in an attempt to reduce my pain and my need for pain medicines, given the liver problem. It doesn't have a high success rate, but he gave it a try. I apparently had more L5 pain than I thought, but the SI joints still hurt a lot sometimes.
My dad was in the hospital with heart problems and a close call but is now home and doing better than before. I was getting concerned--he didn't look good and was having problems that would send most people to urgent care or something rather than waiting it out for a few weeks until a regular doctor's appointment--and an immediate admit to the hospital.
I have been able to enjoy a lot of time with the kids and extended family during the holidays and wish everyone were home again more.
I talked to my counselor about applying for disability (rather she suggested it). I just don't want to admit that I can't work. That I can't work today is fine, that I can't work next month or the next or the next is difficult. I know I can go back off disability but it's a big mental step to take, even though we need the extra income. We also had to talk about some of my doctors, because I can feel upset about the experience of dealing with some of them.
Three doctors' appointments next week, then surgery. Surely I can ride this through the next few weeks and feel better after that. It will be pleasant once I don't feel so queasy every night.