All of me.... Why not take all of me....
Are you singing the song too?
Forgive my break from formality. Today, I just need to open up.
Disability insurance will not cover FND as a viable claim for medical disability/Leave of absence. I need that coverage to protect me on days this condition drives me into bed or leaves me unable to form a clear sentence. It permits me to go to doctors’ appointments when needed and ensures I have a job to come back to. Without that coverage it simply means I can miss no more time at work. I MUST work with this, no matter what happens. My boss is supportive and sympathetic, which has been my saving grace, thankfully. I feel like I’m taking advantage of that generosity sometimes, but that thought only occurs in the moments between the seizures. It is the work ethic in me gnawing at me to get back to task. I am very good at my job, but must admit this condition can trip me up. Lucky for me my boss has permitted me to work from home.
Nobody in the nearby medical community wants to touch whatever this is that I am now. Everyone that sees me tells me FND is not their field (I’m keenly aware and need no reminders) that I am alone here. My family stands by me, but they are hardly able to do more than I am, and it leaves me with a very supportive but lost cheering section.
Gaslighting, even among the few specialists in my region that are supposed to treat FND, is real. Well... gaslight this! I am having myoclonic and focal seizures. Sometimes hundreds a day, every single day. I am usually fully lucid when they are going on, and I try to keep working through them because they happen all the time. If I stopped every time I had one, I’d never get anything done. Does anyone else suffer with epilepsy like this?
The seizures have been going on like this for about 10 months now, but everyone blanketed all things under FND and walked away. I was given a list of hypnotherapy, yoga, diet, and wishful thinking to "fix" this. I did try a few medications, but they made it all worse, so they were quickly stopped. Have the changes recommended calmed any part of this condition? Yes. I've seen some improvements in the general anxiety this all causes, and the full lower limb dystonia is much less frequent, and for that I am thankful, but beyond that it has changed nothing else.
If FND isn't enough to gain help and protection at my job, then perhaps epilepsy of this degree, will. I am not a doctor, yet I find now I must be. I spend much of my free time researching these motions, watching videos, seminars, and personal documentary style videos. I must learn about this. I grasp to find others suffering as I am to find the common threads. These are things I always foolishly assumed doctors would do for you. Not so. Doctors in a condition like this, or at least in my experience, are isolated on little islands of their own practice/specialty. These islands are rarely interconnected with each other. Very few seem to even try to speak to other islands to gain the wealth of their knowledge combined. It leaves me wondering after almost every visit... am I doing something wrong? How many seizures do I need to have? How many changes must I accept about me as normal? How many times do I need to hurt myself today before its important to someone?
I stopped seeing my local neurologist when I was referred to the University of Texas last March. It took months to be seen. I was sure this would be where I would find my answers. These were the best minds in the field within 600 miles. I have to admit that I placed all of my eggs in that basket, because I had no other baskets left. The day finally arrived. It was a very long drive that required my husband to also take a few days off of work to accommodate. We both went into it full of hope. In less than 1 hour, after months of suffering and waiting to be seen, I was dismissed. I was given a link to neurosymptoms.org and told to read it. If I still have problems in 6 months, let them know, but that I need to do yoga and take hypnotherapy seriously. Even more upsetting was the doctors 1st statement made to me. "If you don't believe what I am going to tell you and don't trust that its correct, you will never get better". I struggled for days with that statement, but ultimately decided to trust, implicitly. What choice do you have? It took months to get in to see him. I wasted all of my time off stuck in tormented loops of dystonia and seizures, just waiting for the appointment. He wouldn’t even fill out my disability paperwork. I went from a powerful business woman to a completely reclusive shut in in less than 2 months. I hardly drive at all anymore because I don't trust myself, and I can't risk losing my drivers license right now. I'm trapped in my own brain, and the only help I really got basically told me the only way out it to just, not be in it anymore. Awesome... I'll get right on that. I'm sure I left the map to the emergency exit in my brain somewhere around here.
Do I think FND was the wrong diagnosis? No. I think it was correct, but I also think there is either something more going on under the FND that we simply haven't given a name, or the FND is progressive, and nobody is addressing that. It shouldn't be progressive. By definition, that’s not how FND really works so we are missing something. Really all I know for sure is I’m allergic to phenobarbital, and anything containing dopamine magnifies this condition 10 fold.
I am now working to get back in to see my local primary neurologist. While unable to help with FND, and largely out of his comfort zone where I am concerned (stated as such by him directly) he is still the most willing of all my doctors to keep looking and keep trying. Every set back scares him for a bit and I found that I must let him decompress before he's willing to try something else. He's very worried about doing something that makes this worse. The brain is a funny place and he understands the real consequences of neurological mismanagement. Still... he is the only one that consistently takes my calls and leaves me with the thought that he's paying attention, and really wants to help. Every time I see him, he comes in with an armload of books and papers he's found and been studying, to try to learn more about this part of neuroscience. He is willing to learn, and at this stage, it is the best hope I've had for help.
How do you measure recovery when what you have lost can't be restored?