Hello there, to whoever is interested in this blog, I sincerely apologize for not keeping it up to date. Life has been difficult over the last several months and I think it all came to a head when Rich passed. In other words, I think that was the low point. Nicole is still struggling and I'm in the process of brainstorming ways to raise money for her as her Medicare ran out and she's no longer eligible for any type of therapy, none. Out of pocket it would cost $80 per session and she should be getting some kind of therapy every day, either speech, physical or occupational. It is a lot of money and I have to figure out how to make it happen. Any suggestions would be welcome. I'm going to start a new blog for Nicole highlighting her fight to talk and walk again. I hope this works...
As for me, I'm still kicking. My last scan was unremarkable or whatever interesting words they choose to use on the dictation portion. My spine is still eroding though and it's obviously a concern of mine. The pain is always there to some degree and I just have to be careful with what I do. My toes oddly enough are my biggest nemesis right now. I have chronic ingrown toenails on both big toes, all four corners, ugh! They're like the terminator, they just keep coming back... I haven't been able to wear shoes without causing more damage in a long long time. For those following because they are on Everolimus as well, the fatigue is still there in full force. When I can sleep, I do it a lot. If I don't sleep at night, I will sleep into the afternoon if I have to. I just know the 'importance of sleep and the wear and tear it does to your body when you don't get enough of it. Needless to say, this has been difficult to incorporate into a normal life but it's a work in progress...
So, next big step isn't for me but my sister Nicole. I will post next time with a link to her new blog or my new blog, same thing. This is the most important thing I can do in my life at the moment is help her. My goal is $8,000 that will pay for 100 sessions. The idea is to raise enough money until next year when her Medicare starts over.
Selfishly, I must admit I'm hoping that by doing this it will lift me up as well. Not financially as I'm able to get by modestly. What I'm hoping for is a lift in my spirits as I've been down for a while now. I've lost some pretty important resources in my life, some I've discussed, some I haven't. Life has not been easy and I hope as things come together hopefully for Nicole I'll start snapping out of my funk and start enjoying life again. There's a certain amount of guilt that I feel anytime I'm doing something "fun" as I think of her being stuck in a bed unable to walk or talk and surrounded by ancient people with dementia. I think we all know she'll never be the same after her stroke but we'll never know how much she's able to get back if nobody is working for her.
Wish me luck and sorry again for staying away. Feels good to reconnect with the blogosphere again!
Cheers! Chris
