Re: Have epilepsy and trying to start over
Posted: Sat Dec 17, 2022 5:47 am
I have very severe epilepsy (grand mal seizures) that have not been able to be kept under control with pharmaceuticals, keto diets, or any combo of the above. I own (paying the bank) my own home but in the last year my epilepsy has gotten so bad that my balance cannot be trusted. I now want to start over.
Therefore, not only can I not drive but it has become too dangerous for me to be out walking by myself. I have no warnings of the seizures. I live in Iron River but can't even get to physical therapy appointments because there aren't cabs, lyfts, here or a list of volunteers to call. There is one van that you must reserve a week ahead of time and if the doctor doesn't work on the day the van is in town, it's useless to me. I
usually don't have the luxury of being able to wait a week for some of my ongoing medical issues...like kidney stones that are a side effect of my epilepsy medicine so I have kidney issues frequently. I also can't get to the grocery store or the pharmacy. I've asked the pharmacy to mail my meds and I will pay the cost, but they don't or won't do it. Financially, the only government programs I'm involved with is Medicare Advantage Program, and a monthly SSDI payment. I do get a second disability payment from the state because I was employed by the state when I became disabled. Every time Soc Sec increased though, my state disability decreases by almost twice that amount. So I live off less money every year. I am 51 years old and being forced to make a choice between selling my house and moving to a more populated area so I have access to some type of transportation, or prolong medical tests, procedures, and treatments that could be improving what quality of life I do have. My epilepsy wants me to start life anew.
My boyfriend works out of town for weeks at a time and he is the only help I get. When I lived in WI, I used to get help with housework, lawn mowing, errands, etc , as part of a program so I could stay independent. Then Obama Care went through and my State Medicaid and independence programs were stopped. My health is worse than it was then, but my mind knows enough to know I need help with transportation and errands at the very least. My epilepsy is treated by my specialist in Eau Claire through the MAYO Clinic.
Therefore, not only can I not drive but it has become too dangerous for me to be out walking by myself. I have no warnings of the seizures. I live in Iron River but can't even get to physical therapy appointments because there aren't cabs, lyfts, here or a list of volunteers to call. There is one van that you must reserve a week ahead of time and if the doctor doesn't work on the day the van is in town, it's useless to me. I
usually don't have the luxury of being able to wait a week for some of my ongoing medical issues...like kidney stones that are a side effect of my epilepsy medicine so I have kidney issues frequently. I also can't get to the grocery store or the pharmacy. I've asked the pharmacy to mail my meds and I will pay the cost, but they don't or won't do it. Financially, the only government programs I'm involved with is Medicare Advantage Program, and a monthly SSDI payment. I do get a second disability payment from the state because I was employed by the state when I became disabled. Every time Soc Sec increased though, my state disability decreases by almost twice that amount. So I live off less money every year. I am 51 years old and being forced to make a choice between selling my house and moving to a more populated area so I have access to some type of transportation, or prolong medical tests, procedures, and treatments that could be improving what quality of life I do have. My epilepsy wants me to start life anew.
My boyfriend works out of town for weeks at a time and he is the only help I get. When I lived in WI, I used to get help with housework, lawn mowing, errands, etc , as part of a program so I could stay independent. Then Obama Care went through and my State Medicaid and independence programs were stopped. My health is worse than it was then, but my mind knows enough to know I need help with transportation and errands at the very least. My epilepsy is treated by my specialist in Eau Claire through the MAYO Clinic.