It is a quiet day today. We got rain last night - I didn't hear a thing! I guess that is one of the benefits (?) of my meds. I take them before bed and usually sleep quite soundly - even with the fur balls sharing the bed.
I received a private comment from my niece. She has a daughter with health issues and she felt that she could understand my comments and feeling about wanting to be normal again. For her daughter there has never been any other way to be - for me there was. Maybe that is part of my anger, grief and frustration at having to live with the brain injury and the meds that control the seizures.....but don't get me wrong - Thank God that they do control them!
I continue to hear and read of all the new techniques and studies being done on/for the brain injuries suffered by our soldiers during, or as a result of, battle. I find myself feeling a little bit jealous of them. I can't tell you how grateful I am that these injuries are now being looked for, let alone recognised as real. Hopefully diagnosis and treatment comes before the soldiers have to experience siezures to get such a diagnosis. I was just injured before this realization and technology was available.....but does that mean I can not benefit from it or contribute to the knowledge of what living with it is like? I sure hope not!
Medicine has advanced so far in the past few years that I still have trouble believing that what I have (my current medications) is all there is out there for me. Maybe the neuro was right when he said that if I wasn't willing to risk losing my driver's license to see if there is a different medication that would work for me - then I had what I needed. I would have to take the risk but it would mean I risk losing my ability to continue my job. Financially I sure can't afford that yet.
I guess that really isn't my greatest concern anymore. I am more concerned with the long term effects of being on the same medication for 40 years. I know I have lost most of my teeth (Dilantin side effect) but I've been living with a denture for almost 20 years now - and kept most of my own teeth for 25 years longer then my dentist even thought was possible. What else is this medication doing to my body, my bones, my organs? No one seems to be talking about that - in fact no one but me seems to be concerned about that.
If I truely have nothing to be concerned about......would somebody PLEASE tell me and tell me why! Remember I am pretty big on the why part of things. Don't tell me something just to make me feel better if you don't know it to be fact. If you don't know - be honest enough to say so.
Are there any studies being conducted on long term use? If so - would I be of value to the study by being a member of it? I sure don't have to be but I am 40 years in to this with most of them seizure free (one break through in '83 because short on meds). Can my body, my bones, what is left of my teeth, my eyes, my organs tell you anything that you don't already know?
If there are no studies - why not? The Boomers are hitting retirement, Social Security and Medicare age. Wouldn't someone like to know what to expect cost wise, needs wise and even if there is the ability to cover it or keep up with it? Age does it's own thing to the brain's ability to function amd if you piggy back that with brain injury - are there still reliable treatments and drugs that will work? Will some drugs add to the problems of the ageing brain?
Yes, I am asking lots of questions! I am not finding any answers for the ones I have asked in the past. I am not in the medical profession so I don't know where to look for any answers that may be being found now. I know I can't be alone in my concern or with such questions. Are any research facilities looking in to this? Are there any support groups on the internet for my age group with brain injuries?
Somebody Please talk to me!!!!!!!!!!!!!!
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