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Find a husband or push through?

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
Sincerely, Jessica

  1. I'm so sorry you're going through this. Migraines are bad enough but adding everything else... my heart is with you.

    I'm not even really sure where your mother is coming from. Like that's completely out of left field. A husband? It's a very old world view so you can't be too upset - she grew up in a time where your main life goal was to wed and have the husband be the breadwinner. It's the same way that some really, really old people are super racist and think nothing of it. It's what they grew up with.

    Having said that, the implication that you should find a husband to take care of you is insulting at best. It was wrong, and I'm sorry she said that to you.

    Having these ailments is not a choice. It's not something that makes you weak - on the contrary - it makes you stronger. I've had migraines for years and my best friends used to think I was faking it or that it was just a really bad headache. For years they'd get upset with me for canceling plans or think that I was making excuses. I'll never forget the day that each of them called me (different days obviously) and said "I think I'm dying. I'm in so much pain... here are my symptoms.." and my response was, "Congratulations. You're having a migraine." The shock in their voices and the sheepish looks on their faces when they apologized for getting so upset with me was bittersweet. I was upset that they were hurting, but relieved and happy that they finally understood what I was talking about.

    The point of that was, people who don't suffer from afflictions like that don't understand how it can be so constant. They can't wrap their minds around the idea that someone can feel like crap ALL the time because it's not in their every day.

    The best thing I think you can do is push through. I know it's hard and I know that there are roadblocks everywhere. But... you are a person that lives with chronic pain... and you're an adult. You've made it through childhood, teenage years, into adulthood living with your health issues. That makes you strong. Very strong. Don't pay attention to those that diminish what you're going through - if they had to deal with it I'm 99% positive they'd be laid out flat in situations where you just kept going.

    I know how hard it is and how hard it's gong to be, but I urge you to just push through. Start making jewelry again. Start writing again. Try for a loan and if it doesn't work out, then focus your remaining energy on doing projects that can bring in money with minimal effort. Or try GoFundMe again or research other crowdsourcing sites that focus on medical financial help.

    I'm not very good with the financial advice, but as far as personal advice, just don't let people get to you. WAY easier said than done, yes, but possible. I'll keep my fingers crossed that something comes along that lessens the migraines.

    In the meantime, this is something that's helped take the edge off for me. It doesn't actually get rid of the migraines or stop them, but it's relaxing and helps take some of the bite out. Give it a genuine try and hopefully it does the same for you.

    1. Thank you Jaymelyn525 and Tamara (not sure how to identify you so I went with your screen name like on other message boards and bulletin boards).

      I printed out some of my novels and am working on editing. I can look too long at a computer screen so I thought this the best step forward. I'll take it one novel at a time. Read, rewrite and move forward as I can.
      The seizures are still so severe. I'm having three to six of the grand Mar or whatever they're called per day and am up to thirty of the small partial brain seizures a day. I can't remember their name. It is effecting the bead work. I can't do the jewelry just yet, my hands shake too much and I have numbness that is making it impossible to hold the beads. Once/if it clears up I'll work on the beads, I have so much stone cutting and shaping to do. That'll hold off my jewelry making, maybe I can do some of the metal working... I don't know. We'll see. I want to go prospecting, I can sit and sift the dirt and look for my stones one shovel full at a time and work on those stones I find when I have better control over my hands.
      I spoke with my mom, we didn't end in shouting so I think it counts as progress. She's terrified I'll be along when her and my father pass and that I'll be too sick to care for myself, broke, unable to work, and desolate. I told her during so much of my life I've been constantly surrounded by people I was striving to help and now I look around and am so alone. I feel so isolated already and so forgotten. I don't understand where they've all gone. I don't understand why they aren't here for me as I was for all of them. My friends I'd called them and they'd called me friend but maybe that word has changed in meaning in the last twenty years for I would never and had never left any of them when they were in need. And I have none of them now. She said she knows and she can feel my loneliness and she's thought on it and thinks they just couldn't cope, when I first got sick they told her they'd all be there for me but it is easy to Say but harder to do and given time when I didn't rebound they didn't know what to do. Mom said I was like a superhero and it isn't easy to see those heroes you've always seen go through fire each and every time suddenly tabletop it and to watch and be helpless to fix it was more than they could cope. But they could, they could have helped. They could have stayed. And they didn't.

  2. You could have written my life - right now to the horseback riding (which kills me every day I miss it so much). I don't know how you even survive full time - I'm barely handling part time right now.

    With all your chronic I would definitely look into disability and at least talk to someone who knows more about it - if it takes a while to process, start now. There may be government support programs you can look at - income support here in alberta, called welfare in others. I don't qualify so I make too much but your local one may be different.

    Maybe there is a medical program that will help pay some of your expenses - that is where I'm going as well. Also looking into food banks to spend a few dollars here and there. write everything out and see where you cut back a few dollars.

    Good luck and I hope everything works out - I joke that all I need is a rich husband but I don't have the energy to do much - how would I keep up with a relationship? Just one more thing to have to do. Wish I had cancer and only had to worry how to handle everything for 6 months or a year .... I cant live like this long term - my credit line will eventually max out and then I'm screwed.

    1. Jessica,
      I am a married 56 year old man, who had been a life long migraine sufferer. I have a family history of migraines, but I also was an athlete in high school, and had at least 5 concussions in football. I actually had several college offers to play football, but my life went in a different direction. I worked in a foundry for 35 years, all the while suffering with migraines. My employer didn't like the fact that I used FMLA to keep from losing my job. At the end, in 2013, the sent me for a random drug test. I was drug free, but they said that I had alcohol in my system. Of course, I didn't, I had been there for 6 hours that day, they would not give me proof, but they are a very large corporation, with very expensive lawyers. I could not win, and so they fired me. I got a job part time as a trailer park maintenance man, while trying to get disability. I live in Michigan, by the way. I was turned down, the first time, and so I asked for and received a court hearing date. I got a lawyer called Binder and Binder, who handled most everything for me. They sent me forms to be signed, and notarized when I needed to, forms to get to doctors when I needed to, had me get them the names of any clinics or universities that I had gone to over the past years. They were very good for me, and there was no up front payment, and at least in michigan, they are limited to how much they are allowed to charge, simply a percentage, and not over 6000$ total.
      They did a great job for me and I am now on disability due to migraines, as well as having a back that is not very good, having broken it in a car wreck at the age of 20. I would think that with your seizures you should have a very good possibility of being approved without having to go through any court hearing. People say that nobody is approved right off the bat, but the truth is that the people who work on these cases have no personal stake in it at all, and only go on the facts of the case, and over 40% of cases are approved without going to a hearing. So I would thing that you should have a good chance of being approved. Then, by having your finances stable, you are also under Medicare, so you have health insurance also covered. Then, you can try and get yourself mentally fit, to where you can do the things that make you able to perhaps write more, or volunteer again, on a limited basis.
      I am not an expert, by any means, this is just my own experience. Finding a husband or a boyfriend to share your life with is fine, I think that it is actually a good thing if it happens. But feeling like you should do so to take care of you, or worse, feeling like you HAVE to, would be a shame. From the sounds of things, you are a very complete person already. You seem like a caring, giving, and loving person. Any man would be lucky to find you. But you don't NEED a man to take care of you, and especially if it is only to take care of your financial needs.
      I was married young, to a young woman. For 11 years, then we divorced. I have been married the second time for 25 years this Sept., to someone who I am crazy about. I didn't need her and she didn't need me, we WANTED each other. If you decide to find a husband, do so because you WANT him, not because you NEED him. Good luck, and wishing you pain free days.

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