I Am in Hell

Not the most glamorous way to start this but there’s really no other way to put how things have gone since the weekend after Christmas. Migraine after migraine that weekend put me in an endless pain cycle that I didn’t think I would come out of. I was laid up in bed from early Saturday afternoon until late Monday evening, hoping against hope that maybe an artery in my head would finally blow from all the Sumatriptan I had to swallow. As horrendous as that sounds, I’m sure there are countless migraineurs that have prayed that very prayer themselves, one sharp stab of pain and then an eternity of bliss. I’ve never been afraid to admit things like that, I never will so why stop now? Yes, that weekend I wanted death because it was just too damned much to bear and I was just sick and tired of it all.

Then finally that Monday afternoon the rain stopped and just as quickly as it did here came the sun in all its full, bright glory to bring about more fresh hell because it brought with it extreme cold – there was no in between like there is most of the time – just one minute there’s rain, the next there’s the sun. We were finally able to let the dogs out without fear of them coming back in drenched, but they brought with them muddy paws and I still have paw prints on my floor.

And then comes the 29th, sporting a wicked migraine hangover and still wanting to stay in bed, I knew I needed to get up and move despite my wishes. I was sore and tender from the almost five straight days of lying in bed, I knew if I didn’t move then I would probably be in trouble so I got dressed and started to lightly move around the house. I had no plans to run a marathon, just walked from room to room assessing the fallout from the latest nuclear bomb that went off in my head. All told, it wasn’t as bad as I feared, was able to at least get the dishes arranged, pick up the dirty clothes that I had thrown all over the house in an effort to get comfortable and warm, finish putting the latest attacks into my journal then sat down with a chai tea and began combing through the mail. Little did I realize that I had lit the fuse to another nuke that would take me down again for a couple of days from stress – my eyes landed on a large white envelope from Social Security.

I have been denied yet again.

I threw the paperwork all over the dining room (spilling my perfect cup of warm, creamy yumminess onto the floor at the same time) and as I began telling the man of the house exactly what just took place to warrant such a response, I could literally feel and even hear the snap in my head as the pain exploded. My meds were in the living room where I had camped out during that weekend and as I stumbled across the house to get to them, I started stuttering, words were becoming garbled, half of my eyesight disappeared and you guessed it, I didn’t just trip into the rabbit hole, I swan dived and almost took a major fall into the corner of the stove as the floor dropped out from me and I began shrinking.

Thank you Social Security.

The long and short of the almost 20 full pages of legal-eze and the listing of evidence is that the judge feels that I have only minimally suffered from chronic migraines and that I still am able to work – he based his decision mostly on what the Social Security doctor had said when I went for the physical in the mid part of 2014. There are also a few inconsistencies that my own general physician had placed in my file that I was not aware of and that was where most of my anger stemmed from as it cast a light on me that I was not following the advice of my doctor. I could regale the nightmare of the last visit with her (I went in with a wicked migraine and my TMJ was acting up so severely that my inner ear had almost swollen shut and I thought I had an ear infection going on top of that. She didn’t treat either situation, never laid a finger on me – just sat in front of the computer typing and commenting that ‘You’re far too young to be filing for disability’…..I’m 47 – are you serious?!?!? That’s not all that happened either.), but suffice it to say, I have fired said doctor and have an appointment on the 7th to see another, one that I have seen before and know in my heart will work with me, be honest with me and actually pay attention to the situation at hand.

So what does this mean about my disability claim – two things. I can either work with my attorney and appeal or I can re-file and start my claim all over again. If we were to attempt an appeal, it would have to be on the basis that the judge made an error in his decision – which I am told is often. It would then go through the process of review at which I can be denied or granted an appeal, which if approved I will have to wait a year to 18 months to get another hearing. If I have to re-file my claim – it will be a year to 18 months to get another hearing.

I’m not sure what to do at this point. I received a letter from my law firm stating my attorney will be in contact with me in the coming days so we can discuss our options but it’s more than just that. It’s the fact that I have been in so much pain since all of this began that I’m tired. Strike that, I’m exhausted, worn down to bare bones – mentally, emotionally, physically. I want to feel better, want to get on with my life, want to BE a part of life and it seems that just when I think I can see the light at the end of the tunnel – something sneaks out from the bushes and disappears with me into the darkness. Even on my good days, I’m still in a fog – I’m either in a migraine hangover or so prodrome that I can’t think straight. I do what I can to stay in the present and when I get the really rare days where I feel good waking up, I work on cleaning the house but I am so far behind it will take nothing less than a miracle to get where I really want to be. My Christmas decorations are still up and it’s this time of the year every year that I start to really deep clean the house, washing down walls, windows, floors and ceilings, getting rid of things that I no longer need – this will be year two that none of that will be accomplished because my brain has decided to throw a complete and total temper tantrum that I can’t control let alone begin to understand.

This isn’t exactly how I envisioned 2016 would start.

I do realize the full extent of the fight migraineurs have with our government, I have kept myself in as close to a realistic frame of mind as I could throughout this ordeal but I was still optimistic – albeit cautiously. Invisible illnesses such as migraines and other neurological conditions are incredibly hard to prove because there is no concrete test to show that yes, these do happen and yes, these are debilitating and life altering moments. In one section of the judge’s decision, he states that the MRI and CT-scans clearly shows there is no viable reason for my migraines to occur so I have to ask the ridiculously stupid question – what is he looking for – a big red arrow that states ‘Warning – Defective Area of the Brain, Will Cause Migraines’ ???

Where and when does this end?

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Comments

View Comments (3)
  • kstout135
    3 years ago

    I totally and completely empathize with you 100%. My migraines usually cause me to throw up a lot. But now they are back, but are different. I was literally just thinking today, “Maybe I’m in Hell. This has to be Hell”. Right?

  • Katie M. Golden moderator
    3 years ago

    My heart goes out to you. I thought of many things as I read your story.

    #1 Tell that judge that MRIs and CT scans will never show evidence of Migraines. Clinicians are working on ways to use MRI to diagnose Migraine, but that is not currently available. Take a look at this article: https://migraine.com/blog/the-future-of-classifying-migraine-through-mri/

    #2 Was this your first time applying for disability? It is very common to have to re-apply. The more records you give them the better. And you need to have a doctor that’s on your side. I’m glad you’re seeing a new doc soon. A letter from your doctor is very helpful to your case. I’m not sure why you were told it would take 18 months to either start a new case or to do an appeal. I got denied and appealed. Within 5 months of starting the process, I was approved. However, if this is one of many appeals, I can understand why they told you it would take that long.
    #3 You mentioned taking a lot of sumatriptan. If you take too many over a span of days, it can cause rebound headaches, which are just as painful as a Migraine. Be cautious of this.
    https://migraine.com/headache-types/rebound-headaches/
    #4 What have you tried besides triptans to manage your Migraines? The judges look at how extensive you’ve worked on a treatment plan that has failed. Have you taken pain management classes? Do you do biofeedback? Have you done Botox or nerve blocks? They look at all of that.
    #5 I could be telling you things you already know. But if you want a little more info, here’s a guide I wrote discussing the process: https://migraine.com/blog/disability-income-preparation-guide/

    I hope some of this helps.
    -Katie
    Migraine.com Moderator

  • 23r1c5h author
    3 years ago

    Hello again Katie, so glad you commented and will do by best to answer the questions….

    #1 – during my hearing my attorney did dispute the lack of viable evidence (CTScans, MRIs) through credible medical research, my opinion is that the judge wasn’t paying attention when he did or had already formed his own thoughts on migraines. I will email the link to by attorney when I speak to him next.

    #2 – This is my first time with disability, but I was still optimistic. I have heard that it can take people a few times to go through this, even those that aren’t suffering from migraines so even though I was initially upset at the decision, rational thinking kicked in and I have since been able to calm myself down. It was the law firm itself that told me it could take as long as I stated either way I decide to take, the back log is getting longer and longer by the day.

    #3 I did wonder if maybe I went too far that weekend with the meds. I did see the new doc and submitted a story about it but I failed to ask about MOH. I will be in contact with him in the coming days, that will be the first question I will ask.

    #4 The triptans is the first serious treatment plan I have been on, which I was nervous about in the beginning. I haven’t tried biofeedback but will look into this weekend. No pain management classes, botox or nerve blocks – since I am unemployed with no insurance I can’t afford to pay for those treatments but I do have then listed for discussion with my neurologist when I get an appointment scheduled.

    Hope this helps 🙂
    Thanks again

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