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!!!!!!!!!!!!!!
Sunday, July 29, 2012
Wednesday, July 18, 2012
Do things smarter - Focus Focus Focus
Life goes on....but I am paying more attention. Focusing seems to help with some of the activities I have always done, but were a little uncertain about after my fall in October. As my daughter says "Do things smarter". I am trying!!!
The more I do and the more often that I do them the more comfortable I get again. My motorcycle is still sitting there looking at me and asking "when are we going out together?". That may be getting closer but I am not going to rush it - I need to get some work done to it while I am in this holding pattern with it - but I just can't afford it. We are still trying to get caught up from the "behind" that we got fixing Jeff's bike. We still had full time jobs then but 2008 happened before we got all the work paid for.
Stress in life makes living with my Brain Storms even more maddening. Every time I have to fill a perscription I think of what else I could use that money for. I guess that has been going on in my mind for a long time before now. Why does it cost so much (even the generics cost money) to stay healthy - even when I feel fit and healthy? Grocery costs do it to us too!!!
No, this isn't a depression day. I think it could be an angry day though. My moods and emotions are something that I can't explain to my family in a way that they will understand - but they are the ones who feel the brunt of whatever mood, emotion, feeling or reaction that I have. It is unfair to them and I can't explain it or even warn them what might be coming. It just comes. I often wonder how much of it is medication related.....or is just me?
I used to love beer - and in the beginning I took my meds while regularly abusing alcohol and recreational drugs. I am now approaching my 30th clean and sober birthday (in 2013) and I find that having to take drugs everyday pisses me off. I would like so much to be rid of them all. Alas, I am getting older and the reality is that no matter how well I take care of myself - I will probably have to take medications for the rest of my life. That sucks!
I am reminded of myself (as an abuser) every day as I take the medications that keep me seizure free. They say that we never really get over addictions - we just replace them. I guess if I replaced my addictions with drugs to keep me seizure free I just need to consciencly think of it that way. I know that I have replaced my beer with soda - sometimes as pop and sometimes as soda water - both 0 caleries! That is an improvement - I think.
I also quit smoking 10 or 12 years ago. It cost me too much money and I wasn't smoking them anyway - they just burned up in the ash tray. Computer time has kind of replaced them. Don't know if that is a good thing or not some days.
My life has changed. I have changed. My wants and needs have changed - but I remain pissed off that I have this brain injury that still directs and hangs over all of my life. I didn't used to be mature enough to think about it that way - I just ran away from it in my addictions. Growing up makes you think more and differently. Now I feel more overcome by it then when I would hide from it.
I have to think of it before I can even take a vitamin. I have to think of it (and so does the Doc) if I have to have any other kind of medication. I have to think of it seriously every two years when I have to have a complete physical and med workup to get my driver's license renewed. I also think of it every time I get behind the wheel or on a motorcycle, mower or operate any equipment. At those times I think of how grateful I am that I can still do those things!
That driver's license thing is not because of the seizure history as much as the medication itself - Dilantin in particular - even in the generic form. If I could get rid of that (or replace it with something else that worked as well) I could get a license like normal people! Okay - I am lucky that I can even get and have one - but it is one more reminder that I am different and have to be treated differently. Why can't I just be normal again?
I sure would like to talk to some of you out there with the same (or similar) issues in your life and how you are coping with them. It gets awfully lonely in my world sometimes. It's not fair to expect my friends and family to fully understand. They aren't living this and they have their own lives and issues. I do wonder what living with me is like - sometimes I don't even like myself!
Feel free to leave comments! Please.............Thanks!
The more I do and the more often that I do them the more comfortable I get again. My motorcycle is still sitting there looking at me and asking "when are we going out together?". That may be getting closer but I am not going to rush it - I need to get some work done to it while I am in this holding pattern with it - but I just can't afford it. We are still trying to get caught up from the "behind" that we got fixing Jeff's bike. We still had full time jobs then but 2008 happened before we got all the work paid for.
Stress in life makes living with my Brain Storms even more maddening. Every time I have to fill a perscription I think of what else I could use that money for. I guess that has been going on in my mind for a long time before now. Why does it cost so much (even the generics cost money) to stay healthy - even when I feel fit and healthy? Grocery costs do it to us too!!!
No, this isn't a depression day. I think it could be an angry day though. My moods and emotions are something that I can't explain to my family in a way that they will understand - but they are the ones who feel the brunt of whatever mood, emotion, feeling or reaction that I have. It is unfair to them and I can't explain it or even warn them what might be coming. It just comes. I often wonder how much of it is medication related.....or is just me?
I used to love beer - and in the beginning I took my meds while regularly abusing alcohol and recreational drugs. I am now approaching my 30th clean and sober birthday (in 2013) and I find that having to take drugs everyday pisses me off. I would like so much to be rid of them all. Alas, I am getting older and the reality is that no matter how well I take care of myself - I will probably have to take medications for the rest of my life. That sucks!
I am reminded of myself (as an abuser) every day as I take the medications that keep me seizure free. They say that we never really get over addictions - we just replace them. I guess if I replaced my addictions with drugs to keep me seizure free I just need to consciencly think of it that way. I know that I have replaced my beer with soda - sometimes as pop and sometimes as soda water - both 0 caleries! That is an improvement - I think.
I also quit smoking 10 or 12 years ago. It cost me too much money and I wasn't smoking them anyway - they just burned up in the ash tray. Computer time has kind of replaced them. Don't know if that is a good thing or not some days.
My life has changed. I have changed. My wants and needs have changed - but I remain pissed off that I have this brain injury that still directs and hangs over all of my life. I didn't used to be mature enough to think about it that way - I just ran away from it in my addictions. Growing up makes you think more and differently. Now I feel more overcome by it then when I would hide from it.
I have to think of it before I can even take a vitamin. I have to think of it (and so does the Doc) if I have to have any other kind of medication. I have to think of it seriously every two years when I have to have a complete physical and med workup to get my driver's license renewed. I also think of it every time I get behind the wheel or on a motorcycle, mower or operate any equipment. At those times I think of how grateful I am that I can still do those things!
That driver's license thing is not because of the seizure history as much as the medication itself - Dilantin in particular - even in the generic form. If I could get rid of that (or replace it with something else that worked as well) I could get a license like normal people! Okay - I am lucky that I can even get and have one - but it is one more reminder that I am different and have to be treated differently. Why can't I just be normal again?
I sure would like to talk to some of you out there with the same (or similar) issues in your life and how you are coping with them. It gets awfully lonely in my world sometimes. It's not fair to expect my friends and family to fully understand. They aren't living this and they have their own lives and issues. I do wonder what living with me is like - sometimes I don't even like myself!
Feel free to leave comments! Please.............Thanks!
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