I saw a new autonomic specialist the beginning of May. Work began on this post before I had the appointment, because I was waiting to get told the same things we already knew. “This is a really rare condition and all we can do is symptom management; we can’t reverse the damage that’s been done.” I’ve already faced those demons several times and have grieved each time, knowing that life is never going to be what it was before. However, I was forced to face them again. The feeling in the pit of my stomach, that something was much more serious, proved to be true. I cried for days before the appointment in the solitude of the comforting walls of our house. It’s called anticipatory grieving and nails it on the head.
When the dreaded day came, I didn’t even want to go in for the appointment. I finally broke down and told my husband about my fears. Being a mechanic, he needs something concrete for an answer. He fixes things for a living, but the one thing he loves the most, he can’t fix at all. He coaxed me out of the car and tightly held my hand as if he was willing courage into my heart.
The appointment lasted 90 minutes and the doctor was never rushed. It was probably the best appointment that we’ve ever had. Those fears I had about this monster taking over my body and the resulting sequelae, well my gut feeling was correct…again. Our doctor is fairly sure he can put an official name to this. Although this is autonomic, it is not a neuropathy, as we had believed for over three years. It is a central autonomic disorder, which increases the fear factor and seriousness. He also believes that I was born with a mitochondrial disease and that is now attacking my brainstem.
As of now, we are back in the testing and consult phase. It feels like we are starting the entire diagnostic process again; the difference being that this time there is no going backwards. It’s just going from bad to worse. It’s just a matter of how bad.
So, I’m facing my demons again and the grieving is in full swing. The unknown is so hard to face. I had made peace with the fact that we sort of had a name, were attempting to treat symptoms, and knew that it was progressing. It was kind of like just floating in mid-air. I was okay with that. Things are different now; the grief process has reset, yet again. These diseases of ours, no matter if they are physical or mental; they all have a large emotional toll that we don’t want to admit to…I know that I don’t want to admit it.
I want to be me, the old me, the me I was three and a half years ago, before my life changed in a matter of days. I’m tired of being home every day. 1273 days of attempting to accept this new normal but yearning and dreaming each day of who we used to be.
So, I’m declaring war on my demons. Well, I think I am. Even the best laid plans have kinks in them…