Feb. 19, 2013
it through the weekend just fine. I'm a little more active every day. I
have trouble pacing myself, so what happens is that I'm doing fine
cooking, cleaning or what ever...not looking at the time and then
suddenly my head and the rest of my body turn on me...and that's it, I'm
done. Then I'm back into bed, usually in tears, gulping down a pain
pill and waiting for it to pass. It's this poor judgement on my part
that got my Mom to drive another 10 hrs. back to Texas to spend another
week. (well, that and several emotional breakdown's over the phone)- I'm
sure she is SO proud!
I spoke with Dr. Kim's office
yesterday morning about the new headache. They increased the frequency
of my pain meds, called me in more and told me that if I don't see a
difference in 7 days to let them know and they will call in steroids.
The problem with steroids for my body (besides yucky weight gain) is
that my body will get dependent on the steroids to feel better, then
I'll have to wean off again and go through the same pain. I've taken so
many pain pills and so much ibuprofen it seems excessive, however..Dr
Kim said..."Just take them..it's only been 3 1/2 weeks...it's going to
hurt"..Thanks Dr.K.. very encouraging.
I went back to my PCP,
Dr. Horner, this afternoon. The lymph nodes are smaller..but not gone.
He wants to watch them over another week or two, expecting they will
continue to shrink. If they get larger then back in I go for blood
work. He said one reason for one of the lymph nodes not shrinking
quickly is that it's positioned beside a very atrophied muscle. I
apparently have severely atrophied muscles in my neck, shoulders and
upper back. As soon as Dr. Kim gives the nod, Dr. Horner wants me to go
to a craniosacral specialist for at least a month of PT and rehab. This
will help with rebuilding muscle strength (which Dr. H says is at less
than 80% since surgery) and will ultimately help my vision (due to the
fact that ocular nerves are very much affected by neck movements---very
interesting to me). After the month, we will reassess and plan further. I
am to rest my eyes as much as possible through out this process..and in
about 6 weeks he wants me to have a check up with a neurological
ophthalmologist and begin speech therapy.
have to continue being patient and limiting my visual stimuli. And on
that note..Mom just came and shook her finger at me that my time is up.
Thanks for your continued support.