Flopsy Mopsy

I had my Botox injections almost two weeks ago now.. and this has been brutal so far. I am still in excruciating pain and the complications (I hope they are complications, anyway!) are really disturbing!

I haven't noticed any relief from the pain this time, but my motion side to side has improved a bit. I don't think I have as much motion as I had with the first set of injections and now, I am having serious problems with the strength in my neck muscles.

I manage for the first part of the day to keep my head mostly upright.. But after a few hours.. My head just becomes too heavy for me to hold up.

My head seems like it gets so heavy.. Like my brain wants me to look down at the floor, no matter what I do, my head flops forward. Just like a Flopsy Mopsy doll!

When I try to look in the mirror, or in the upper kitchen cabinets, I can't lean back enough to see that high. The top of my head is forward and my forehead is facing the floor.. when I try to lean back at the waist, I can hardly even see to grab a drinking glass from the low shelf.. And I can forget, at all, about seeing the upper shelves. I am struggling to tilt and lean way over to the side enough to be able to see out of the corner of my eyes.. To look up, at all.

It's now late in the day, and I am having to write this entry while lying down on the couch. I have to more strength to hold my head up. There's no way I could function sitting in a chair or at the computer desk, I'd be stuck watching the keyboard instead of the monitor!

Hopefully, the Botox toxin will level out soon and I can find out if this is a side effect or if I am just getting worse! :(

Dystonia Girl vs Botulinum Toxin - Round 2 ding ding ding

It's Friday night.. and I can't sleep.. I am in so much pain! OMG!!

I had my second round of Botox injections this morning. And that was not fun AT ALL!!


Doc injected me probably about 30 times.. with 200 units of Botox.  In my upper back, my traps, up the back of my neck, and in the little muscles under the jaw down to the collar bone.  It was like getting stabbed in the throat over and over again! Those were the worst ones! :(


My hubby took some pics while I was there..

This is the doc getting the needle set into one of the spasmodic muscles.

And this is me (grimacing - not smiling), trying to hold still as he pumps me full of poison.

Today, at my appointment, we also talked about the problems I've been having with my voice... and how it's been cracking and turning to "pockets of air" as I speak. Doc said that there's also another Dystonia called Laryngeal Dystonia, which puts the vocal cords, since they are also a muscle, into spasm and it affects the speaking voice.

He can refer me to one of the very few ENT Specialist, that do the Botox injections right into each of the vocal cords. :-/ 

Seriously? Ok, I'm gonna have to think about that one for a while, because just getting the injections into the outside of my neck/throat hurts like hell.. Um.. yeah..

Getting stabbed in my vocal cords VS losing my voice?  Maybe losing my voice won't be that bad?

It's been a long day, so some pain meds.. and I'm off to bed! Not that I'll probably get much sleep again.. I have a lot of new decisions to think about apparently!



How I Became a Dystonia Patient

I had my Botox injections on Wednesday.. and it's now Thursday.. just one day later. When I woke up this morning, I turned to my left to see what time it was.

OMG!! I TURNED TO MY LEFT TO SEE WHAT TIME IT WAS!!!

It wasn't a big turn, but it was a turn.. about 10 degrees!! OMG!!! I started crying, I was so happy!!!

I screamed to Mark, "Honey look!!" as I turned my head back and forth a tiny little bit each way. OMG, I can move. Not a lot, but I can move!!! I've been essentially paralyzed for 10 weeks, so I am sooooooo happy, sooooooo excited!!

And then it hit me. OMG!! I started crying even harder. OMG!! I am so sad.. and so scared... and so happy.. and so excited.. and so sad.. and

OMG!! I have a PERMANENT NEUROLOGICAL DISORDER!! I HAVE DYSTONIA!

Yes, I do. I have Dystonia.

My new life started February 6th, 2012, my changed life...a life of pain, of disfigurement and disability... a life of Botox and pain meds.. a life hoping for a permanent cure someday.. and on this day..

I became a Dystonia Patient.

And this blog is about...  My Life With Dystonia

Superbowl Monday!

So, here it is... February 6th, 2012.

Monday morning, the day after the Superbowl, I unexpectedly woke in horrible pain, unable to turn my head or move my neck, from my shoulders to my skull.

I seem to be paralyzed and am in excruciating pain!!

OMG?!?! WTF!?!?!?! What the hell is happening to me!!??

I haven't done anything unusual.. yesterday was a great day with the family watching the Superbowl.. watched my daughter play some volleyball in the morning, stopped and picked up munchies and drinks, hung out at the park in the afternoon, and later, sat cheering, in front of the TV, eating chicken wings and pizza. Nothing unusual! Nothing life changing!

So, what the hell is happening to me?!?!?