I have several chronic incurable conditions and I’ve had chronic migraines the longest, since I was a toddler, longer than any memory and in the last five years the different specialists have mentioned disability (neurologist, gynecology, urologist) and now I’ve switched docs and switched docs and searched and juggled and tried and I feel so lost and tired. My parents live with me part time, so they can work here during the week and then they have their place where there’s open air where they go on the weekend. But I live here all the time. I used to go to their place periodically but I can’t do several hours in a car now. Now I can’t manage the trip to the grocery store without sobbing and that as a passenger. I have not driven in six months and that is harder than a lot of the other things I’ve given up since 2010.
I knew I would not make it to retirement but I wanted to make it ten years more. I was working full-time, going to school barely part-time. I wanted to finish an MS in IT Engineering, an MFA in writing, and a PHD in Human component computing (computers and engineering and technology). Then I wanted enough time to arrange things so I could work online part time teaching before I was forced into medical retirement but I’m only 31 almost 32 and I’ve just failed my computer class towards my first MS, I FAILED it. My mother is telling me that I need a husband so that I can stop working and both my parents are telling me they won’t support me should I choose this.
I’m having one grand map seizure a day and these little zone out seizures multiple times daily on top of the migraines that’s so frequent I can’t remember a day I haven’t cried with it in months, I’m (TMI here) urinating blood and up to go every twenty to forty five minutes (at very best), and the abdomen pain is horrid. Choose. Choose! Really. I don’t know what I’ll do. I’ve been told it is a year to two at best for USA disability to kick in if I win and I’m living paycheck to pay check and not able to afford all my medicines and treatments now? I don’t know what to do. There are no more treatments nor surgeries for my other conditions and I’ve been down and up the path for migraine meds prior, I’m trying to find a workable seizure medicine but that takes time and the neurologist doesn’t think it will lesson the migraines.
I’ve stopped my home based jewelry making business, I stopped writing (I used to write for an hour a day and several each weekend day, I have so many novels sitting in a folder for me to work on rewrites), I stopped programming and building computers out of scrapped computers (a volunteer thing I did where I helped churches with their websites and rebuilt computers to give to older people who I then taught to use them all free of charge), I stopped horseback riding and stopped working at horse rescues and other animal rescues, I stopped gardening and making aquaponic systems and stopped going out with friends, I streamline ed everything to try and make this work as along as long as possible. But this is all Choice.
How do people do this? What do they do? The whole gofundme thing doesn’t work, I tried that in 2015 when I had nine surgeries in just about as many month and my friends decided to try and help. I can’t get a loan to last until disability comes through if it does, what if it doesn’t? I don’t know, I don’t see a way for all this to work out. Please, provide guidance. Direction. A light in this isolated abyss.
Lost and in pain