Two Year Update

Posted on Posted in Cavernous Angioma

It’s October 8, again. It’s been two years to the day that I came home from the emergency room after finding out that the CCM had been bleeding in my brain stem.  I so wish that I could say everything was okay, but it’s not. That’s not to say it’s all bad though, either.

Every day seems to bring another change. Most of the time, it’s a good change. Something works better or I am able to do something again that I had not been able to since the operation. But the fact remains that I still have to use my wheelchair and I still can’t talk very well. I also can’t use my right hand for a whole lot. That’s a lot of “can’ts”.

So instead of being sad today, I will try to focus on all of the things I can do. The list really is extensive. And it is getting longer every day. I still feel as though I am in recovery and not done yet. Between all of the help I get from staff, family, and friends along with the adaptive equipment and home modifications, I can get upstairs, downstairs and around the house. I also have this new computer and software that allows me to talk rather than type. So slowly, slowly I’m getting back my life again.

Recently I have had what seems like my first real setback. I have been so shaky that I have not been able to work well. I don’t know if it’s related to my brain or not but I have over nine appoitments dealing with medical staff again. I feel like I am back to being a professional patient. So far we’ve been able to rule out hearing stuff. Apparently I have very good ears. I worry that it is stress related. I have been taking on a bit of stuff lately. It would be horrific to find out that I can’t handle a little stress…

So I just listened to webinar put on by the Brain Injury Association of America where he talked about using the word ‘discovery’ in place of ‘recovery’. Maybe I’ll try that for a while. There was also a lot of talk about bringing injury controlling your life. If you are unable to go one day without thinking about it, apparently it controls you. I guess I’m still being controlled. At least I’m not so conscious of every second that I can’t relax sometimes. So I’m through the worst “post traumatic stress disorder”. But according to this webinar, I’m not fully living life yet. I’m getting close though, I think. And two years really isn’t that much time. I wish I had known then what was about to happen. I   would have done a few things differently.

Last year at this time I was contemplating deep brain stimulation surgery. Sometimes I wonder if things would be easier had I been able to have the operation. (I’m so thankful to my friends Cindy, Chasity, and Bonita along with Dave for going to St.Paul to fight the appeal in court with me.) I try to see the silver lining. Maybe it’s this PoNS unit. Who knows. But hopefully I’ll keep surging forward.



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