Old Bubble gum & frayed Twine

Well, I'm in a bit of the brink here. I usually am extremely up beat and positive so I don't understand WHAT I am feeling or WHY? I just want to sit down and bawl, really it's due to everything and nothing.  I'm frustrated by my conditions which God knows shouldn't even make me blink by this point in my life.  However, I suppose it is the FACT that I am losing more of me each day. This continual jerking makes putting on earrings & necklace a major test of my will.  I refuse to give up what is important.  Oh, I know it's not really the jewelry it's the jerking that is still me, who I am, etc. There's supposedly, if you believe TV commercials, a woman shown jerking like me and the Dr has put some device in her that he activates with a magnet in the chest area and her jerks are 98.5 percent improved.  Right now I'd let them split my skull open and stick whatever wherever to be "normal". Dear God, is it not enough to have a messed up neck/upper back/fibromyalgia and now this freak disorder that is GENETIC called fusogenic paroxymal diskonsia?   I can't bear the thought that one day I will no longer be able to care for me let alone my husband & children.  I've told hubby the day I get that way, to put me in a nice facility, pretend I've died and to go on with his life.   I want him and the kids happy not some wacked out medical case for them to look at or deal with. I will apologize up front I quit the anti-depressant as I believe it was making the jerking worse & more significant as there are only so many neurons receptors in the brain for dopamine and evidently I had too much and overload the transmitters in the brain.  LOL  My doctor says I should go to med school as I keep him on his toes. I apologize for this down babbling, but I can't really unload on hubby, I want to spare him that so I always put on a smile or laff for he & the kids. The only good thing I can say is this....there's a contemporary Christian song that I believe is titled "I WILL PRAISE YOU IN THE STORM".  If any good can come from this, I only hope it brings glory to God.  And if that does bring Him glory, then the storm is worth it. Catholics believe you can offer up your suffering for others......that being the case, I offer mine up to the hard hearts that need Him, those who suffer more than I, and I offer it up to God as He helps me bear it hour by hour. Hugs to all, and remember, we all got a purpose, and whether you realize it or not, someone else is somewhere needing you.  Even if you are just held together with old bubble gum and frayed twine. Love & hugs to all.

Replies

deleted_user
deleted_user

May I be nosey and ask if you have gone back onto the antidepressant?
deleted_user
deleted_user

Yes,CAROL, love, I did go back on it at 20mg as 30mg seemed to worsen my shakes/jerks. However, since further research, I think honestly this PD & PND (Paroxsymal Diskonesa and Paroxsymal Night Diskonesa) has just went wild with the snow storm which has hit. So since I am in a snow storm, today was horrid. Thought for sure, even with ALL my meds that I was going to have to go to the clinic and get a shot of whatever I got last time. Hurt like dickens but stopped the jerk circus.
deleted_user
deleted_user

It is so frustrating when we don\'t know what is happening to us. They never know for sure with me either, just alot of guessing and treating going on.
so with this PD do you get genetic testing and counseling?
Nan
deleted_user
deleted_user

NAN YOU ARE TOOOOO FUNNY! Remember I\'m in HELL so far back in the country these \"episodes\" I have are freaking the local.

My sister, younger, started the same symptoms I had but limited to her hands/arms. So when she saw her neuro and told him her symptoms and my symptoms, he knew immediately the name. To date there is a total of 6 all blood kin that do this to some degree. HOWEVER, NOT TO BE OUT DONE, I DO IT ALL OVER AND AT NITE. So, nana nana \"I WIN\" ROFLOL

On the plus side, all that horrific jerking helped to lose 6 pounds. TALK ABOUT JAZZERCISE! I guess I\'m doing JERK-ERCISE. LOL