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Resentment
Tue, 12/21/2004 - 23:41Does anyone else feel a level of resentment from family for the time, cost and energy that your epilepsy seems to take?
Everyone says they understand and know that the meds and stuff are necessary - but when the bills come due and you also have $125 worth of perscriptions that need filled - it always seems to come up. Not to mention higher insurance costs and co-pay for regular doctor visits or lab fees to run med levels.
I am beginning to feel that it is the biggest single drain on our income - although I know it isn't. I does prevent us from saving or spending those dollars elsewhere but that can't be helped. Am I being over sensitive?
I was coasting along in happy limbo until the side effects of the meds I have been on for these past 30 years (Dilantin & Mysolin {now on generic forms}) began to also cost us a lot of money. How? Lowered bone density (tests to determine that), broken elbow two years ago, broken arm this year, weakened knee (hey I am an active person), loss of teeth (top gone 3 years - bottom need to go), HRT meds that are countered by D & M so I have to take more.....does it end? What else is happening that I don't know about yet?
I want to go back through the testing and diagnostic proceedures to see where I am today - 30 years later and 30 years older and certainly 30 years different. All we have done for 30 years is monitor my med levels because the seizures have remained under control. There may be far more options then we are even aware of!
That will cost money and time and energy again......and I will probably have to go back through some of the experiences again. That scares me! Maybe that scares my family too so we have all become pre-occupied with money and drugs and seizures......
Pep talks? Advice? A soft shoulder to cry on? A kick in the ass? Give me whatever I need here. The strong part of me is not keeping up with the other parts right now!
Thanks........................Lee
Comments
RE: Resentment
Submitted by Christine on Sun, 2004-12-19 - 21:25
RE: Resentment
Submitted by LeeMc on Tue, 2004-12-21 - 13:48
Lee again....Can anyone give me some idea of what I am in for with a re-eval these days? 30 years ago I was having the seizures and for all we knew they were putting my life at risk. Medical treatment and testing was absolutely necessary at whatever cost in money or time - I had two small children to raise! It took them 2 years to diagnosis and another year to get meds regulated to work. I am no longer having seizures due to my meds - but my meds are causing their own set of problems. Money, time and energy just seem to keep going down that drain......
If we had all the money back that we have spent the past 25 years fighting to save my own teeth there would probably be more then enough for me to be able to afford to go for testing again...and pay for it and the time off of work. Well that ain't going to happen so where do I go from here? I also have to look at time frame - winter months are when I could go because my job duties and business are lighter but that's also when the bills are higher....mainly because the income is lower so it doesn't balance out. Unfortunately we are in that middle-class income bracket where we make too much for government help and too little to afford it on your own.
My outside job involves the maintaining of my driver's license so that is a consideration I have to take in to account. How can I test, maybe change meds, risk a breakthrough and not lose it? That would mean going back to be retrained, recertified and then relicensed to do the job that I have been doing for 17 years. I also own my own small business and have to be able to meet my customers needs - or I will lose them.
New meds may still be under patent so they will cost more. Will that offset the cost that the side effects are costing me now? Is this a Catch 22? I've been damned if I do and damned if I don't before but the stakes didn't seem so high then.
I am going to have to plan ahead for this no matter what - so any input you guys can give me would be appreciated. Thanks alot!!!
Later........................Lee
Lee again....Can anyone give me some idea of what I am in for with a re-eval these days? 30 years ago I was having the seizures and for all we knew they were putting my life at risk. Medical treatment and testing was absolutely necessary at whatever cost in money or time - I had two small children to raise! It took them 2 years to diagnosis and another year to get meds regulated to work. I am no longer having seizures due to my meds - but my meds are causing their own set of problems. Money, time and energy just seem to keep going down that drain......
If we had all the money back that we have spent the past 25 years fighting to save my own teeth there would probably be more then enough for me to be able to afford to go for testing again...and pay for it and the time off of work. Well that ain't going to happen so where do I go from here? I also have to look at time frame - winter months are when I could go because my job duties and business are lighter but that's also when the bills are higher....mainly because the income is lower so it doesn't balance out. Unfortunately we are in that middle-class income bracket where we make too much for government help and too little to afford it on your own.
My outside job involves the maintaining of my driver's license so that is a consideration I have to take in to account. How can I test, maybe change meds, risk a breakthrough and not lose it? That would mean going back to be retrained, recertified and then relicensed to do the job that I have been doing for 17 years. I also own my own small business and have to be able to meet my customers needs - or I will lose them.
New meds may still be under patent so they will cost more. Will that offset the cost that the side effects are costing me now? Is this a Catch 22? I've been damned if I do and damned if I don't before but the stakes didn't seem so high then.
I am going to have to plan ahead for this no matter what - so any input you guys can give me would be appreciated. Thanks alot!!!
Later........................Lee
RE: Resentment
Submitted by Belinda on Sat, 2004-12-18 - 06:09
Lee,I know all about resentment.I grew up with it and my sisters resented the attention I got.I sometime thinks my parents resented what I cost them.After I was so old my step dad retired marine champus only paid 75%the rest came out of their pocket because I was grown adult.Belinda