When Life Takes a Turn…

or how to suddenly get a deal with disability

Up until July of 2012 I was your average working mother of two. I was happy, healthy, and tired…life with a 4 year old and a 6 year old would do that to anyone. I was in semi-good shape, had plenty of energy when my children allowed me to sleep, and I had a decent (though never stellar) amount of strength. Then everything changed.

It all started with a migraine. Back in 2007 I was diagnosed with hemiplegic migraines. Take the pain of a migraine, light sensitivity, sound sensitivity and add random paralysis. Yeah, not cool. These migraines can mimic seizures and strokes, which can freak out an entire ER. Anyway, I had one of these gems back in ’07, got tested, saw a neurologist, got diagnosed…and that was it. I had my daughter shortly after and didn’t have a single issue for five years.

That July of 2012 I got hit hard. The damn thing lasted for five days (so not cool when you work at a place with a strict attendance policy) and even returning to the medication I had been prescribed years ago did nothing. The event ended and I returned to my normal life…for a few weeks. Suddenly, another attack happened and lasted for another five days. Perhaps it was my stressful job, we thought. So, I left in hopes that the migraines would stop and then I would find something a little more stable.

Then came August. There were no more headaches but there were numerous uncontrolled movements. Limbs flailing and twitching, like with Parkinson’s or Huntington’s. Body twisted at odd angles, once my arm pulled so far behind my back I thought my shoulder would dislocate. Rigidity in my legs so intense I was afraid my bones would break. Facial drooping resembling a stroke. Muteness. Inability to vocalize thoughts. Even though I could think them clearly the words would not come out of my mouth. Forgetting simple words in conversation. Or the best one: complete total body paralysis with no loss of consciousness. I can’t move a single muscle, with the possible exception of my eyes, but I am 100% aware of everything that is going on…literally trapped within my own body. Naturally, events like this lead to a doctor’s visit. Which leads to blood tests, MRI’s, and EEG’s…all of which turn up nothing. Then there was the neurologist, who ordered more blood tests and a medication trial. Let’s just say that taking Levadopa when you don’t need L-dopa really, really sucks. On the upside we knew it wasn’t Parkinson’s or Huntington’s.

So, since metabolic was out, brain problems were out (apparently this includes MS), and it wasn’t related to dopamine…it must be psychological. Off to the shrinks it was. I had one session with a counselor who came to the conclusion that though I had a history of depression and anxiety along with a recent health crisis I was handling things pretty well and did not need therapy. Duh. Then I saw someone with a few more letters behind their name who gave me a psychological evaluation. Results: it’s not psychological. And we are back to square one.

That occurred in November. It is now April and I still have no answers. Furthermore it is getting worse. We have tried a few medications to treat the symptoms but nothing is perfect. Lyrica is the best but I can’t afford that since I lost my insurance (because I can’t work anymore) and I can’t get anything different or better insurance-wise because the bastards decided to hit me with that pre-existing condition bullshit. I tried a muscle relaxant but besides the fact it always made me nauseous it also became difficult to maintain consciousness. It actually turned me into, as my husband put it, a zombie. I was awake but unaware of a lot of stuff…seriously, I remember very little of what happened while taking that med. So, it was back to the gabapentin. It helps. But I still have movement issues. The worst attacks are treated with diazapam so nighty-night for me when that happens.

In short, I hate it. I can’t drive, can’t work, hell I can’t do half of the stuff I used to do without bringing on an attack of the twitches. It is always there. The tingling in my legs and shoulders never ends…it is a constant reminder that I could loose control at any moment. I do have good days as well as bad, but even on the good days the tingling reminds me of what could be just around the corner. The more I do, the more I twitch. For example, I was fine all day…then I walked to the post office (which is less than two blocks from my house) and now twitchy legs. Fanfreakingtastic. That makes the third day this week. The attacks are increasing.

I have become utterly dependent on others. I cannot get groceries, go shopping, go to the doctor…hell sometimes I can’t even go to the fucking bathroom without assistance. I am worn out and worn down. My positive attitude has been chipped away at for several months and it is getting harder and harder to hold on to. I have difficulty walking, and just forget about getting on the floor to play with my kids…hell, it takes crazy amounts of effort to get off of the couch. My tiny little four year old loves to be carried (don’t judge me) and it breaks my heart when I have to tell her that I can’t pick her up. I am crazy weak. I went from being able to do a one hour yoga routine to being unable to maintain downward dog for a full minute in a matter of months.

I am at a loss. I hate this. I mean really hate this. And the worst part is there is currently no light at the end of the tunnel and there is no one who can help me. There is so much I want to do but there is so much now that I can’t do. It frustrates me to no end. I am stuck here at home, alone, able to do very little most days. I have to do the damn dishes in two or three parts most days because my legs won’t let me stand that long. I am tired. I am angry. I am in constant pain. Nothing helps and no one can answer the one question I want answered: What in the hell is wrong with me?

I can’t take my daughter to activities at her school. Can’t take my son to Boy Scouts. I feel like I am missing out on so much and I am only 31. I am way to young for this. We have pretty much given up all hope that whatever this is will just go away…this is my life now. And I am losing hope that I will ever have a diagnosis. I am stuck. In this house. In this body that doesn’t work. But I have full capacity of my mind. I think that is the worst part. To know everything that is happening but not being able to tell anyone or move at all.

The moments of paralysis are the worst. Being locked in my own body with full mental capacity…it is like hell. I can see my kids. Hear them ask me what’s wrong…but I physically cannot answer them. That is the emotional pain. Then there is the physical…pain worse than anything else, even childbirth. Pain that never ends. It is always there haunting me. Sometimes I can lessen the pain but I can never eliminate it. And sometimes the pain is so great I just want it to end…anyway possible.

I don’t know how much more of this I can take. I am so tired of fighting my body just to do the simplest tasks…and the things that I once loved have become near impossible. My hands don’t work well enough to crochet or cross stitch. I have extreme difficulty cutting fabric for quilting and paper for scrap booking. Sparring on an Amtgard field…forget about it, I won’t be able to teach my kids proper sword fighting techniques (I am a geek, get over it). Taking the kids to a zoo, aquarium, museum or even a mall is almost too much for me anymore…I am not sure that I could physically accomplish such a task. I don’t always have the strength to hold a book…that was the greatest loss. Luckily, I have a wonderful husband who solved that problem by getting me a kindle. I have a hard time playing video games. Twitchy and fine motor control do not mix well.

Suddenly, I find myself wanting to rebel. Anything to prove that I am still in control. I want to say fuck it and do what I want despite my body screaming: Access Denied. I want to be able to hop in my car and go to the library, spend the day out of town with a friend, go hang with my sister-in-law…and I freaking hate driving. But now that I can’t, oh, how I feel it’s loss…the loss of independence. I want to fight but I don’t know what I am fighting against. I am angry but too weak to do Kenpo to burn off some steam (at least not without risk of serious injury). I just want to run away and hide from it all. But how do you hide from what is going on inside your own body. It sucks and the worst part is there is not a damn thing I can do about it.