ok . I have been a little depressed BUT...I AM feeling better and Although I thought I'd offended everyone, I have come to learn MY GMAIL was down! After I can't tell you how many hours of back and forth with Google and Apple about passwords... USERIDS... security.... My brain is taxed but I am getting some news from the outside world. It was out for about two weeks that random stuff was missed. I apologize for any rudeness or sorry I missed something. Please resend ...
Winter approaches
Getting ready for the holidays... trying to organize dates and calendars has been affected by the drugs and the brain leisions ' but we are keeping it simple and looking forward to family time.
Angie, Cathy and Me heading back from the Cabin
Getting ready for the holidays... trying to organize dates and calendars has been affected by the drugs and the brain leisions. Wobbly is still with me so we are keeping it simple. I am also dealing with a little depression. I guess I am entitled although I hate to admit it. Going to check with the good Doctors on Thursday and maybe there is a happy pill for me.
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| Angie, Cathy and Me heading back from the Cabin |
Hope I don’t jinx this...but i am actually feeling almost human! This is about as good as it’s been since the diagnosis. The new drug seems to be working and adjusting the amounts within accepted limits the trial is great, side effects few. Gaining a little weight, but all in all. I feel I can make some plans for the next couple of weeks without fear of needing to cancel them.
Getting here wasn’t easy, I have been quiet in the process... lots of processing to be done. Initially it was the pain in my shoulder that I thought would never go away then it grew and went to my back. I could hardly walk. Seriously it took me 30 minutes to get moving in the morning WITH some slow walk up and down the stairs befor i tried walking on my own.
When I went to Mass General for the first round of new meds the pain had been there but got worse on the new drug. After a day they decreased the dosage to 3/4s which was muh better on my body. three weeks into. It was then reduced it to 1/2, where it has been since. This decrease was predictable from other patient findings so I am not concerned. I still have achy joins, back aches to some extent, as walking crooked when i get tired, but getting stronger.
Exerising has taken on a whole new meaning for me. It is a necessity to do stretching when i first wake up. Without it, I would be on the floor. But I have a little routine that is working. I started with physical therapy 3 times a week (Maybe twice), and have recently added water exercises. They feel really good, until I realized I can't swim anymore. I remember what do to but the strength in my legs is GONE for anything resembling a flutter kick.
Summer ended with some great weekends at the lake, and trips to Boston to adjust the meds and get on the new regime. We ran away for a weekend in Tampa to visit my college roommate and her husband. Mostly staying close to home trying to rebuild some strength that depleted horribly about the time of drug change. Don’t know why. Any ideas?
One adjustment that has been difficult for me is realizing that my family is full of adults! Making their own holiday plans and needing to be in different parts of country. for the holidays. I have very little idea how the season will play out here, but this year i am just going to let it be. I will let you know after the fact, or perhaps, in the process. Whatever, may we all be surrounded by those we love and care for.
