Mini Whine

For the past several years, I seems to be in a constant state of 'recovering' from something or another.  And I'm so tired of it.  Recovered (and rehab) from a spinal fusion, recovery from gall bladder surgery, non- recovery from hyper extended knee, recovering from a mass removed from my back and the time it took for it close up,  recovering from total knee replacement surgery, recovering from a car accident, recovering from pneumonia. 

Sunday, a root canaled tooth sheered off, and I had to have the roots removed as it couldn't be repaired. Now recovering from tooth extraction, and look like a chipmunk on one side of my face and it hurts like hell.

Oh, not to mention the FND still throwing out the occasional seizure.

I'm tired. I'm tired of not being able to DO.  I'm tired of being afraid to move as it could (and often did) trigger a seizure. I'm tired of the pain, but I can pretty much deal with that, but it's EVERYWHERE lately.  And I'm tired of having to stay medicated to make some pretense at living.

Visit to Dr G

It's a good feeling to know I'm not insane, nor am I imagining things, or making things up. I am a text book check list of FND.

Dr G had some good information.  He told me that this can and often does go away as suddenly has it appears. He also said that the best course of action is to medicate the symptoms away for a goodly amount of time.  Then slowly reduce, and I mean SLOWLY, the dosage. Try that for one week and if no symptoms show up, reduce dosage again for one week, and if any of the symptoms show up, go back to previous regimen for a few weeks, then reduce again.  Repeat as necessary.

Oh, his office personnel were quite pleased at how organized I was. I had downloaded and filled out on my computer the Patient information form.  And got a chuckle out of one of my favorite terms for the bathroom.

Here's hoping...

I have an appointment to see the neurologist tomorrow morning, and Mr S and Doctor H have said he will want to witness one of the episodes/seizures.

I've been slowly reducing the dosage of my medications. Today, I have only had the one dose for the morning. My leg feels so heavy, twitchy, sore, and not quite under my control. Sometimes it feels like it's right on the verge of seizing up.

No night dose. Not sure if I'll get woken up by a seizure or not. Trying to not think about it.

Tomorrow, as I typed, I see neurologist.  I know there are certain things that has triggered an episode, and I know Dr G is going to want to see it up close. 

Excelsior. RIP Stan Lee

Stan Lee, Marvel Comics' Real-Life Superhero, Dies at 95

The feisty writer, editor and publisher was responsible for such iconic characters as Spider-Man, the X-Men, Thor, Iron Man, Black Panther and the Fantastic Four — 'nuff said.

Stan Lee, the legendary writer, editor and publisher of Marvel Comics whose fantabulous but flawed creations made him a real-life superhero to comic book lovers everywhere, has died. He was 95.

Just finished up home visit from Neurocare services

 

We now have a proper name for what is wrong: Functional Neurological Disorder.  It's not all in my head, I'm not making it up.

FDN is as common as MS and Parkinson's with similar levels of disability and impairments with quality of life, but they don't involve the brain.  FND with me presents with: weakness, sensory changes, movement disorders, seizures, gait and balance difficulties, chronic pain, sleep disturbances.

To put it bluntly, I'm a mess.  But a fixable mess. After giving her the traumatic/stress filled* events I've had just in the past 5 years alone, it's a wonder my body didn't rebel earlier.

Having to be brutally honest about things goes against how I was raised.  It was "If asked, don't tell".  No joke.  To discuss thing that I had kept deliberately buried, had me in tears. Not of shame of what happened, but shame for TELLING someone.  Go figure!

 

*those in the know know what a shit storm it's been.

People keep asking me how I feel

I really don’t know how to answer it without worrying people.

I go to bed terrified that I will be woken up in the middle of the night, having a dystonic seizure just from trying to get into a comfortable position. I’m afraid that if I roll out of bed, putting my feet to the floor a seizure will start.

I, who used to be able to walk for hours, can barely walk for 15 minutes.  When I walk in public or in the house, I am unsteady on my feet. 

I used to be able to heft Canon body, with the 100-400mm lens on all day photowalks.  Now, I can barely lift the rig for 5 minutes

Cooking?  I can get a bowl of cereal ready, using to hands like a 10 year old.  Boiling water, using sharp knives around someone who could have a seizure?

I feel useless. I still get to do the ‘dirty jobs’ (the cats litter boxes) and can manage laundry if hung up on inside rack.

The medications:  The hardest thing is staying awake. I feel as if I’m in a perpetual  drowse.

Depressed?  Yeah.. you could say that.

Where to begin

After a week of the proscribed medications, I was still having the dystonia seizures. I can't describe how it feels to have your body trying to force itself into geometrical angles where there shouldn't be.

I did what I was instructed to do, I went back to the Emergency Department (why? Because the soonest I could get to see a Neurologists is December 12th)

While waiting to see a doctor, I had a seizure.  My son, and a ward nurse were there to help immediately. After waiting another hour, I got to see a doctor.  Or should I say he brusquely spoke to me.  Then he left, saying he was getting some information for me.

While I was waiting, I was asked if I could move to the ambulatory waiting room, as they were swamped.  No problem.  Alan and I went there, each of us sitting in a chair waiting.  The doctor showed up, and asked us to follow him. I stood up, took three steps and started having another seizure.  The 'doctor' saw what was happening, said "Oh, I'll be back when when you're finished." and walked off and left me there, in extreme pain, with my son preventing me from falling to the floor.  After the seizure was over, my heart was racing, and I was gasping for air. 

The 'doctor' showed up and gestured for us to follow him, and then disappeared again.  I presumed he was getting me information.

He was. He handed me a fucking POST-IT note with a web address.  And then he just walked away.

Wing  and I had a conference call with two friend, filling in some of the details of the useless visit to Fiona Stanley Hospital.

Yes, I had a seizure while waiting to be seen, but I also had another one when the doctor asked me to follow him, and when he saw what was happening, he said "I'll be back when you're done." No offer of assistance, help not even a comment. He just walked off. If it hadn't been for Alan, my son, I would have landed on the floor.

This is NOT acceptable behavior, and Wing, Daryl, and Meegan said I should lodge a complaint.

So, I have lodged a complaint against the 'doctor' that was treating me, watched me having a seizure and said "I'll be back when you're finished'. Person taking the complaint said that behavior was unprofessional and unacceptable.

Complaint has been written up, and filed. Maybe he will learn to be a bit more empathetic.
I still don't feel any better. If anything, emotionally, I feel worse.