Just be warned: this post is a bit of a rant!
A sure cure for my symptoms, whether they be joint swelling or high heart rates, is to have an appointment to see the doctor. On the day of the doctor's visit, my symptoms tend to greatly improve! And this was the case on Monday. After several days of being unable to get of the couch, I woke up doing great on Monday morning. I was very happy (and ran a bunch of errands I'd been putting off due to fatigue)... but slightly frustrated as well! Endo Doc, once again, didn't get to see me when my symptoms were at their peak. After a weekend of very erratic heart rates, my heart rate in her office was still elevated, but didn't change very dramatically when I stood up.
It was a rather frustrating appointment. Endo Doc believes that whatever's going on isn't an endocrine issue, and therefore she has "no idea" what to do. I appreciate her honesty, but didn't she sit through four years of medical school and several years of residency in internal medicine? Shouldn't she therefore have SOME idea what's going on? Specialists are so niched that they are kind of worthless outside of their area... Anyways...
She said she would need to refer me to another doctor, but isn't sure what kind of doctor that would be. I suggested a neurologist who specializes in dysautonomia, but she first wants me to see a cardiologist to get a complete work up. I've already had that done in 2007 due to some heart issues I had because of Prednisone and electrolyte imbalances. Then in 2010, I was in the hospital for three days for testing when the adrenal stuff/weird dizzy/shaky episodes began. They did EKGs and I was on telemetry the entire time - including during one of my "episodes." My chart noted that my EKG was normal and my telemetry was completely normal during the entire hospitalization. Endo Doc says that since there's no note in the chart by a cardiologist, I need another complete work-up by cardiology to rule out any heart problems. Erg. I genuinely believe, and I know my body pretty well, that the problem is NOT with my heart. I think that the heart is a symptom of whatever's happening. I have no desire to wait for months to see a doctor, then get expensive tests repeated, just so they can "rule out" problems, then reach the end of the work up and be no closer to helping me feel better.
So, we compromised and agreed that the next step is to get a tilt-table test done. My understanding is that you are strapped to a table. They monitor your heart and blood pressure while they tilt your body up and down, trying to reproduce your symptoms. I'm sure it's at least as much fun as it sounds. ;) I told her that I'd really like to get this figured out before I start PA school in May, because I am worried I will be unable to attend school if this continues. She told me that was just negative thinking. So I'm sure that positive thinking will get me through PA school even if I can't stand up without a heart rate in the 130s.
Unfortunately, my pain has not really improved. I've been sorta off-and-on miserable, and the pain is definitely a big part in my overall malaise. I really wish that it would get under control. Endo Doc decided that I should stay up on a slightly higher dose of steroids for the next two months, just to give my body some extra support. A little sad, since I had worked so hard to get down to the dose I've been on for the last 10 months. Of course I can taper back down if I feel up to it, but I agree that my body needs all the help it can get right now.
As she prepared to leave, she hesitated and turned. "I just really wish your doctors had tapered you off steroids before you had surgery in 2009," she said. I reminded her that I was put on high-dose steroids because I was having bloody diarrhea 15 times a day. She said, "Yeah, but since they weren't working, I don't understand why they didn't taper you off steroids before you had surgery." Um, the reason I had to have surgery was that even on a double dose of Remicade twice as often as you're supposed to get it, plus steroids, I continued to flare. When I was flaring, if I started tapering, I always got even worse. So if they had tried to get me off the steroids before surgery, I likely would have DIED, or had to have emergency surgery while still on the steroids. But there you have it - UC treatment from an Endocrine doctor's standpoint! Haha!
At first, I was getting all worried and anxious about the what ifs - what if I continue to deteriorate and can't function, what if I can't get into a good doctor, what if I have to wait to see a doctor for months, what if I have to get expensive, annoying, unnecessary tests, what if I have something that they can't treat, what if I can't do PA school... then I remembered - my faith and hope are in God,
not in the means that He may choose to use to help me get healthier. Also, my primary goal is His glory. And if He is most glorified by me being on the couch, unable to get up, then that's honestly where I want to be. How could I want anything other than what brings Him the most glory?