We came home to mail in the mailbox from Jessica's doctor's office. When there's unexpected mail from them, it's not always good news. The last time we got unexpected mail, it was to announce a rate increase. This time it came with news that her doctor has gone on to new endeavors. Her doctor is no longer there! It was such a struggle finding him...finding someone that knew about and understood CFIDS! I guess that's what the clinic specializes in, so we still have a doctor there, but we'll be starting all over with someone new.
Monday, December 28, 2009
Since I'm so far behind in blogging, I'll try to do a recap.
We had a telephone appointment with her doctor on November 5th, and went over her labwork from the last visit. Her EBV levels are still high, as well as her Mycoplasma pneumoniae. Her Cortisol, DHEA and thyroid was still off. Her Aldosterone level was still low, but he doesn't want to increase her Florinef any more than it is right now. Her B-12 and Magnesium looked better. He adjusted her medications slightly and said we'd meet again in 3 months.
Jessica made it through the fall semester at school. She made it to the end missing only 3 days, which is wonderful! Since 3 days (along with good grades) is the maximum to be able to miss certain semester exams, it got very close. She wasn't feeling well that last Monday, but went to school for her one class that she'd have to take an exam in if she missed any more, and then back to bed.
Jessica has done really well this semester, up until around Thanksgiving.
We went to Mount Magazine with my extended family at Thanksgiving. It was great visiting with everyone, but when we all went hiking, Jessica said she didn't feel that she was up for it, so she stayed back in the room. My parents also stayed behind, so she wasn't alone, but I just hated that she was missing out. And while we were having lunch, she had to take a nap.
Jessica (and I) signed up to ring bells for the Salvation Army this Christmas season. I thought it would be an easy way for her to get some community service points. She wasn't allowed in to the National Honor Society this year (even though she had the grades) because she didn't have enough community service. (Though she wasn't able to do anything last year.) Out of the 3 times we had scheduled to ring bells, she rang with me once, and ended up with a headache. (The headaches have become more frequent again.) This last time we were scheduled on December 19th to ring bells, she had to stay home and rest because she didn't feel good, but she saved up her energy quotient for that day to be able to go with her lifegroup to the Boys & Girls Club to have a party for them. So, it's still a matter of pacing, as anyone with CFS knows.
The weekend before Christmas, we had to skip going on a sleigh ride and looking at lights Friday night because she wasn't feeling well, and she took 2 naps that Sunday, but was able to do some shopping in between.
So, it's been a little give and take - give up something to be able to do something else - more headaches, more resting and more not feeling as good. I'm not sure why she's not doing as good. She's been more active and enjoying her friends and social life. But we're thinking that she's probably not feeling as well because she hasn't been remembering her pills as well, especially the ones she's supposed to take during lunchtime at school. Or maybe this is just CFS?
Overall, we can't complain. She's been able to be involved in things and have a life again, which is great. And she has a 2 week holiday now to rest up some.
Posted by Laura (aka Mom) at 12/28/2009 08:22:00 AM