May 3, 2010 I am off to see a NEW Rheumatologist, Dr. Sholter. This morning I wake up and I am doing really bad. I have a migraine, my energy levels are so low that I am barely moving around and I just feel so out of it. I have no clue how I am going to make it to this appointment. I call my friend Lisa in tears as I don't want to miss this appointment but trying to get to it just might completely do me in. She suggests seeing if I can move my appointment. I try the doctor's office and the receptionist is down right rude and nasty. If I don't make it, she won't reschedule me until August. I can't go that long before seeing him. I call Lisa back, I have to go to the appointment. I don't think that I can walk the block to the bus stop to catch the bus. I am literally that bad today. She tells me to call a cab to take me to the appointment. I barely get dressed, throw on a hat and call a cab. I get to the appointment and just lay on the table in the room waiting for the doctor to come see me.
I guess in some ways, it was good to be at a very low spot that day when the doctor saw me. He literally saw me at my worst so he could understand a little more of what was going on with me. We have a lengthy talk, he examines me. Again, he is at a loss as to what is going on. He orders up more blood work for me. He wants to make sure that the last tests of the SSA and SSB are still so high or if there was a mistake in the last test. He will see me in a few weeks for follow-up. I don't even remember how I got home (I must have taken a cab) and when I got home, I slept the rest of the day. Not one of my good days for sure.
Surprisingly, the next week, I feel great! A whole week I went without pain, feeling normal and having some sort of energy. That is what makes this whole journey frustrating. I can have days, weeks etc of just absolute feeling like garbage and then I will get a brief relief period where everything feels "normal". It just doesn't make any sense. But don't get me wrong, I take those good times and I run with them. Glenn always tells me in those times to not overdo it but it is hard not to. Sure enough, it doesn't last and I go right back into the tank again but I am so happy to have had the time to feel like a human being again.
The May long weekend we headed out to BC and Washington State. Our niece was getting married in BC and our good friends live in Abbottsford, BC and Ferndale Washington. We had a wonderful weekend of visiting with friends and family. Glenn and I decided that since we were there and I wouldn't have much time to spend with my friend Kristi, that I should just stay out there for the rest of the week to visit. When Glenn got home, he was going to be leaving for a golf trip so it didn't make sense to have me come home and then be by myself when I could stay and visit with my friend. So we surprised her when we saw her as Glenn got in the car to drive home and he got out my bag and I stayed! It was a great week just to relax and visit. My energy was in the tank again so I slept a lot (good company I am!) but she understood and we made the best of the time that we had. I just hope that the next time I see her, I will be a lot more fun to be around and won't always say, "I gotta go take a nap". I am so glad that people are so understanding and are putting up with me.
So there goes May. Not a great month and still no closer to finding out what is happening with me. But I can't give up hope. I have to keep believing....