Waiting

We are waiting now for insurance to clear and for a case manager to contact us. We should hear something by the end of next week, hopefully. In the mean time we are preparing/researching things like housing in Baltimore, head scarves/hats, and gathering our books/movie lists.

I found out that the Tremont Park Hotel has studios and one bedroom suites that are reasonable with the Hopkins discount. I tried to work the AAA discount too but didn't have any luck. I think we may go with the one bedroom with a door, so I can sleep and Andrew can work.

On November 4th I will talk to my OGYN about doing the BRCA2 test that other family members have tested positive for. This is a genetic test that reveals whether I carry the gene that often leads to breast/ovarian cancer. Some people choose not to know this information, but with a young child at home, I feel it is best to know.

CK yesterday was 2920. Feeling OK, I still get slammed with fatigue in the middle of the day and have to rest. Weakness is most noticeable in the usual Myositis areas: getting up from chair, floor, stairs, rolling over, neck, raising arms overhead. What I cannot do: lift head from lying position, lift legs from sitting or lying position, lift arms when overhead from lying position, sit up from lying on back, hamstring curls. What I can do: although contorted, get up from a chair/floor/etc., slowly climb stairs with a railing, and walk, walk,walk. I used to be an athlete, a runner, biker, skier, hiker, practice yoga, pilates, etc. and all of that has helped me know my body and its potential. Walking, stretching, meditating, and using the therapy pool is key for the stiffness and key to calming the racing Prednisone mind.

It's crazy how comfortable we get with our limitations, accept it, and call it normal. So many of us forget what we used to be like and carry on. Although hard, we have to continually remember and strive to get it back!