I really need to get back in the habit of blogging more regularly...
This week was much better as far as the adrenal/autonomic issues are concerned. I've had way less racing heart/shaking/feeling terribly weak episodes, which has been great! I dunno if my body is just liking the increased steroids or if it's something totally random. I just have no idea. Unfortunately, I've had a very, very rough time with pain - it's the worst it's been since I went to the ER for pain back in April.
Tuesday found me at the doctor's office for a happy reason: getting my vaccines up to date for the Physician Assistant program I'm starting in a few months. I also had to discuss getting a letter so I can receive accommodations at school due to my illnesses, if necessary. Anyways, the next day, I started having terrible pain. It was just awful.
Thursday I was supposed to see the Rheum PA for a follow up since I started a new medication for pain about 6 weeks ago. I called about a week earlier, since it wasn't doing anything except taking up space in my weekly pill containers. The message was for me to double the medication. Since I started out taking 100 mg pills 3x/day, and I would now be up to 600 mg 3x/day, I asked the nurse if she could call in a stronger strength, since I wasn't too keen on taking 18 pills per day. This was very confusing to the nurse for some reason, so I received FIVE calls back while she was trying to figure out the math. When I went to the pharmacy to pick it up, the nurse had called in three different prescriptions... and the only one that was NOT in the 100 mg pills was only a ten-day supply of the med. Innnnteresting!
Anyways, I was in so much pain by Thursday that I could not imagine dragging myself through the construction, across the metroplex, to the parking garage, to the bus, to the building, up the elevator, across the floor, into the office and back again. I was seriously debating canceling my appointment, but a good friend reminded me that I always complain that I never see the doctor when I'm feeling bad. Here was my opportunity.
The nurse (thankfully not the one I talked to on the phone, I'm pretty sure she was embarrassed to show her face) asked me if I was okay. Guess I looked like I was not feeling well. The PA asked if I had noticed any change on the new medication, and I told her that I hadn't. "Huh. Well, if people are going to benefit, they usually do within several days of taking it." So I asked the PA if I could start tapering off the new med, since I hadn't noticed any relief at all (in fact, I was feeling worse), even at the higher dosage.
"Well, we can discuss that after you've been on it for 2-3 more months."
"So if people are going to be helped by this med, they usually can tell something pretty soon after starting it."
"Well, yes, typically."
"So I have actually gotten worse."
"Maybe you just need to stay on it longer."
"But you just said that it usually works pretty quickly."
"Well, we all know you don't follow the rules."
So I guess it'll be taking up space in my pill container for the next couple months. She as good as told me that she is just stalling because they don't know what else to do to help my pain. We discussed upping the methotrexate shot, but decided to wait for now since most of my pain is muscular, and of my joints, only my hands and wrists are really bad right now. She also gave me a new muscle relaxant to try. It was like drinking several glasses of wine really quickly on a really empty stomach. I'm not a fan!
When I got back down to the lobby to wait for the bus to take me back to the parking garage, I sat down next to an excellent older couple. The man was adjusting the blanket covering his wife, who was in a wheelchair. I texted a friend, and he said, "Excuse me, you seem very proficient with electronics. Can you help me with something?"
I'm not sure that being able to send a text translates into proficiency with electronics, but what was I going to say? He showed me his phone, which wouldn't allow him to make outgoing calls. I took a look and had no idea what was wrong, and noticed my bus pulling in the driveway. I apologized, but he didn't hear me, so I tried to say it again, then he started talking, and I tried to wrap things up, but I missed the bus.
This was the best thing that happened to me that entire day.
This man, whose name I never got, tenderly told me of his romance with his wife, who is now unresponsive and requires constant care after a 35-year battle with Parkinson's. He reeled me in with a fantastic joke:
What's the difference between God and a doctor?
God doesn't think He's a doctor.
And it just kept getting better from there. He fought in Korea, was a telegraph operator in North Dakota, worked on the railroads in Clovis, married a girl who he thought would provide him with financial stability, since her father owned a large farm, but he didn't count on her being such a hard worker who whipped his lazy self into shape (his words, not mine). She worked her way from bank secretary to the first female Loan Officer, up to Vice President, just with a high school education... he went on and on. And I fixed his phone.
Nearly an HOUR later, my bus finally made a return voyage after another shuttle driver took pity on me (he had made three trips around the campus before my bus made it back once) and called up the bus and told them to get back over here. By this time, there were so many of us waiting that that entire bus was filled, with people standing up. An elderly gentleman nobly (and in no uncertain terms) asked me to take his seat, and he stood. His little wife, who couldn't have been a day younger than 90, leaned over and said to me:
"Have you noticed anything about this bus?"
I wasn't sure what she meant.
"You're at least FIFTY years younger than everyone else!"
She was right. Gee, thanks, lady, rub it in. Haha.
By this time, I really was hurting terribly, and I had had to wait for the bus so long that I got caught in rush-hour traffic all the way home. I put my miserable self to bed. There's more to my week, but that's all for this post, since this is excessively long already! That'll teach me to go so long without posting!