So much to catch up on!
Easter weekend was busy, but mostly good. Friday night, I went to the Good Friday service at Willow Creek, which was especially meaningful, since my uncle was the main "producer" of the service. I went with a lot of my family, which was really nice. I just had trouble sitting up for the whole service. My spine was uncomfortable and my head was throbbing.
Saturday, I had a mostly good day. Well, after 5:00 that is. I rested and dealt with nausea and headache pain until 5:00. Then, for some reason, I felt pretty good. Most of my symptoms improved and I had an enjoyable night. I didn't go out or anything, because I didn't want to risk feeling sick again.
Sunday, I had to skip Easter services, of course, because I don't get up out of bed until the afternoon...ever! I had three houses to visit for Easter, which proved to be a bit too much to handle. After the first house (which was my mom's), I went to Gus' parents' house and then to my Grandma Millie's house. By the third house, I was gone. My head felt like it was going to explode. I barely ate anything all day, even though I was surrounded by delicious food. Nausea was the main problem. And I'm still dealing with a little extra sensitivity in my GI tract, so I have to be careful what I eat. My headache was the main problem of the day. It built as the day went on, and all I could do was curl up on the couch at my grandma's house. I didn't eat anything or move around or talk very much.
That headache lasted overnight and into Monday. All day Monday, my fatigue and POTS were severe. I couldn't get up for anything. I had been experimenting with my Provigil dose, and I've learned that I cannot function without it! Thank goodness I have that medication to lift the weight of the fatigue.
Then, I had severe nausea that lasted all day Monday and Tuesday. I've been having a difficult time thinking of foods that sound palatable. I've just been so nauseated with very little appetite. And everything I try to eat just tastes bad. For example, for lunch yesterday, I had a couple saltines with peanut butter, 2 baby carrot sticks, one bite of banana bread, and a half an oatmeal cookie. It was all gross.
I have been losing weight, but not too much. Probably because I'm not moving around very much these days. And I still eat a Subway mini sub for dinner most nights of the week. I get turkey on wheat with lots of vegetables. That way, I know I'm not malnourished! I also have healthy cereal with Lactaid milk for breakfast every day, too.
So my body mass index is currently 18.5, which is the borderline between underweight and healthy weight. This means that I shouldn't lose any more weight, but I'm still doing okay! I just have to keep working on maintaining my muscle mass, which I'm trying to do with physical therapy. However, any amount of exercise has been increasing my headache lately...even when I'm just doing isometric holds while lying down!!!
All of this going on while I'm just waiting for my next doctor's appointment. That will be April 27th...less than 2 weeks away! I'll be seeing Dr. Camacho again, who is the head of the Osteoporosis Clinic at Loyola Hospital. She's the one who decided that I should try the megadose of vitamin D with calcium to increase my bone density. So I've been taking that for 4 months, and I really hope it's helping. When I see her, I will beg her to order a new DEXA scan, to find out if my bone density is improving or still getting worse. If it's still getting worse, I think we need a new treatment plan, such as a medication made to treat osteoporosis, like Forteo or Boniva or Fosamax. Any one of those would be great.
However, if the bone density scan shows that my bones are improving, then I will pass those results along to TCI, and hope that Dr. B approves me for surgery. I really really really REALLY hope that I am approved. My body is struggling so much to survive right now. I'm still having swallowing problems, GI problems, heart rate dysregulation, temperature dysregulation, nausea, and horrible headaches. I also notice that I spend a lot of my time trying to get my head in the right position...manually lifting it into place. Even in my sleep, I find myself pushing my head upward or trying to hang it over the edge of the bed. I really hope that the time for my re-fusion is getting near. It would be perfect to schedule surgery for the beginning of the summer, and have the summer off to recuperate. I just can't know until I get this bone scan done.
So, I'm just pushing through while I wait for my bones to be strong. Thank you for following my condition through this very long process!
