A Piece Of Me...

I was born in the second half of the 1900’s, possibly descended of "Scottish Tinkers" (still finding this), Tetched with Megalomania, Decidedly Hetro and an emerging Crone!

Winter, Blue, Spiritual, Empathic, Artist, Artisan, Wordist, Herbalist and a Stone Caster!

Now then, for good measure I’ll throw in ADD, Bi-Polar, OCD and a bit plain ole NUTZ….. J I refer to this as having numerous "Cats In My Attic", which means I still have control...otherwise they would just be "Bats In My Belfry"! : )

Most of my time, these days, is spent dealing with a semi-bizarre condition, "Arachnoiditis w/Myoclonic Dystonia"! Such is life after a fairly severe (ACDF C4-7) spinal incident. I am so grateful to no longer be paralyzed after successful surgery, that I try not to whine about the “Chump Change”! I’m sure any Quadriplegic out there would gladly accept the sacrifice for the freedom of Mobility!

Monday, June 20, 2011

Neck Brief; Arachnoiditis and Action Myoclonus with Generalized Dystonia

In late September of 2006 I injured myself while doing work on a truck!  To make the longest story brief, I am too short and too round to reach into the engine compartment, so, I went in and retrieved a chair from the dining room.  Almost every time I applied heavy torque to the wrench, it would throw off my fulcrum point and the chair would flip out backwards; I would pitch forward and then be left straddling the front end!  This actually occurred several times spread out over 3-4 hours and the whole ordeal was quite the fiasco!  Breaking wires, banging my head, smashing fingers, the balancing act and the busted parts!  Sometime during this circus act, my whole right side, from the breastplate down, went numb and I just figured I must have hit a nerve and it would get better after some rest!  Some days later I was rushed into surgery where they were desperate to see if I could be brought back from what was now nearly complete paralysis due to a pair of burst cervical vertebrae. It was more like a "Permanent Contraction" position in, that all my muscles were in a "Charley Horse" that would not release!

After a 7 hour ACDF at C4-7 with a Titanium VBR C5&6, I can walk again!  Hip-Hip- Hooray!  Smile, SMILE!  But, I still have some problems.  I am completely numb on the outside from my right armpit, across the breast line, straight down dead center of my body, all the way to my toes. EVERYTHING there is numb on the outside and it feels weird and awkward, then there is of course, the high voltage electricity that runs along the same said course on the inside.  It is exactly the same thing as when you sit too long in one position and your butt and/or leg goes to sleep and then when you stand up, it feels "dead" and the communications to the brain aren't making it and so the "messages" are just going haywire and feels like you are "electrified", It feels like the noise made in the power lines along side the railroad tracks. I am like one of those Orbs at the Fair that have electrical "Lightning" on the inside and when you touch it the zapping moves all around!  Most of the time it is a low voltage, it is just a low buzzing hum and then at other times it really starts cracking, snapping and popping!  Then, every once in awhile it randomly sends a jolt so strong, it can knock the air out of me like falling out of a tree.  The one thing it does NOT Do however is Go Away!  No, It never EVER STOPS, it keeps on buzzing 24/7, never ending electrical zingers!!  The level is the only thing that changes, it fluctuates in "waves" like one of those "Bio-Charts" of the 70's you could get for 25c at the Arcade!  Meet "Archnoiditis”, no, it is NOT a fear of spiders…

Externally? On the skin?  Nope, no feeling, none, gone are the Cutaneous Receptors; can’t feel a thing, scrapes, cuts, bites or sting, no not even heat nor cold!  However I do have some whacked out, seriously out of control, overactive, "Proprioceptors" to terrorize me!  If I do something or “experience” anything that “sets off” or “triggers” a proprioceptive response, it begins a “Storm” of uncontrollable muscular (Action Myoclonus w/ Generalized Dystonia) and nerve firing that we simply call the “Herky- Jerkys”!  My entire body convulses in a horrendous spasmodic episode that (when going full bore) essentially feels like I’m having a Baby while being Tazored!  This is usually centered in/or around my (still) numb right lower quadrant.  The firing and zapping can come in various ways, such as rapid sparks that causes just small "jerking" responses in one or two areas like the thigh or side, or it can zap and grab causing a total body spasm like a giant "charlie horse" "locking" me up either front or back , with an Rhythmic change up, so that I feel like I am being ripped apart.  They usually only last a couple to few minutes or so but on occasion, I have had some last up to 20, depends on what I was doing that brought it on!  It always reminds me of what that film “Hell-raiser” looks like it might feel, with all those “meat hooks” tearing through and ripping the flesh, only for me it is on the inside instead!  I sometimes scream...but I try not to, it really upsets people!  Having a baby (10), (severe) Herky Jerky (9.5), gallstone attack (9), Tattoo on inner/upper thigh (8)!  Eventually, the zapping will gradually subside like a tuning fork, slowly fading away, then just as I catch my breath, the “burning lava” starts pouring through my body along the entire right side, feeling EVERY inch, this is where "selective memory" allows you to live through to the next episode... 

These spasmodic episodes (HJs) are totally unpredictable.  What brings one on in one instance doesn't necessarily mean the same thing will bring it on every time.  Some days I can get away with doing a lot of things and often push, then, there are days that the Current is very high and It can be triggered by anything; getting hot, a shiver, stepping on an uneven surface, showering, clothes that rub me or are too tight, lifting something the wrong way, bumping into anything, even as light as the wind or just someone touching me!  Shivering or being nervous, I have even started from eating ice cream a couple of times!  I can just be lying there asleep and something will turn up my “voltage” and wake me up, BAM, within 1-2 minutes something, even just the blanket will “trigger” it, or I simply start "Dreaming" I am having one just to awake and find out I am!  Simple everyday events can become horrendous ordeals!  Putting on my socks might mean a 10 minute passage through Hades!  I live my whole life in between these episodes.  How many I have per week generally depends on my level of stubbornness and persistence at trying to do things, but I guess on average I have between 15-20 pretty considerable ones and maybe another 25 not so bad.  Every once in a while, I’ll have a REALLY bad day and have HJs all day, some little, some medium, with a couple of bigger ones thrown in for good measure.  On these days I end up just staying on the sofa, chair or anywhere trying not to move.  I never really know when one is going to happen, but sometimes I can tell my voltage meter turns way up, then it is just a matter of hold on, find a spot!  Occasionally, I even get away without a full HJ and will just get a few jolts!

I can just barely bend over, pick up or carry anything more than a loaf of bread, pushing or pulling is skeptical at best and anything over my head is out of the question!  Before the surgery my left arm was in permanent state of contraction, like a chicken claw.  So now, even though I can use it freely, it still wants to “Pop” back into that contraction.  It just hangs back, right at the edge, so I can get away with a significant amount of “activity” with that hand, but if I try to hold onto something a little too long, with a little too much force or just in an odd position, it will just go “snap” right into a “Charley Horse”.  My right arm has a rhythmic “dance” to perform during most Episodes!  I must be very careful because my legs can and will sometimes just not do what I think they are supposed to be doing.  Then of course the added bonus of having an outright full blown HJ if I stumble or fall! If I am out in public this will always result in someone wanting to call an ambulance.  When I fall, I just try to aim towards something soft, a sofa or chair, at least the carpet!  I will generally end up on the floor a couple of times a month, by just not paying attention and “whump”, there it goes!  I have trouble sitting for very long at a time because my side will start burning like fire; the insides start jumping around like I have teeny tiny firecrackers going off up and down my whole right side.  I must say that my honey is not very happy these days either.  Not only the huge shift of extra chores, but putting up with EVERYTHING comes all right back onto him!!

I cannot seem to tolerate the drugs for much of anything, they never do anything for the pain anyway and I can’t live with the side effects of all that crap, mostly the dizziness, constipation and nausea thing!  They piled those prescriptions on, I had some prescriptions to fight the side effects of some of the medication!  Really? They didn't even WORK!!  I have had real issues with pain pills and bowel problems before in my life, it wasn't long before THAT cycle was just as unbearable as my illness... that the drugs were not helping anyway!!  I also am intolerant of the “groggy zombie” feeling!  I'm not sure that actually qualifies as LIVING anyway... Even though I tried quite a few Pharms like Neurotin, Lyrica, Baclofin and so many others… I quit, it never turned off the “Electricity” or stopped the HJ’s!  I do take a Valium and a muscle relaxer once in awhile,  I primarily rely on Teas and my Herbs!  I am a Certified MMJ and an admitted PotHead!  I do not really intend to justify my use, it works for me, … even if anyone else "thinks" it does not, THEY are not living inside MY body and I DO, so there!  I do not propose that it has or will 'cure' me, there is NO CURE FOR THIS!  The only thing that can be done for me is to try to mask the symptoms, up to and including morphine!  I do not believe I am better off strung out on Morphine than Happily using my MMJ and living life, still doing something, not a zombie laying in bed waiting to die!   It does not Cure me, Fix anything or perform any miracles but at the very minimum…I do NOT CARE AS MUCH!!  I like smoking it, I gave up a 35 year Tobacco Habit to smoke it! Been years, I don't miss the Tobacco at all!  If I am sick or feeling full of allergies, my preferred method is to Vaporize, as this is the best medicinal delivery available at this time!  I also use it in oils, tinctures, butter and edibles!  Yes, I AM HIGH ON POT, instead of the 16-25 pills a day of Pharmacopia I was on before…that didn't work anyway…but were eating my insides away...

I cannot achieve my level of previous life activities, because she was a whole other person.  I can do a little, unassisted in the kitchen, lifting pans is really hard and "Big Cooking" is too much of an Ordeal...  I am not happy that so many of my meals are ready made these days, it is too hard sometimes, I do keep trying!  My husband now shoulders both His job & a Big Part of Mine too!  I try to go shopping when someone else is available to go with me AND if there is an electric cart available.  Many trips to the grocery store have been aborted because there was not a cart available.  A lot of stores and shops I can’t even go to at all anymore because I can’t walk that far and also most anyone with me is petrified I may have a HJ.  They are pretty embarrassed to say the least, I have been told by people that were startled and surprised about my condition, that I should stay home and not put "strangers" through these episodes!  I am sorry they feel that way....

Harder yet is that I can no longer work or earn a living!  Besides the money problems, it is gut wrenching not to be able to pick up and use my tools, not in the kitchen, nor in the shop.  I can’t operate a drill, grab a staple gun, use a saw or hammer.  Just holding my own arms up is very difficult so I can just barely hold anything up to sew at the machine, then the other day, sewing a button by hand took me about 20 minutes because I had to stop 3 times.  My life as Ms. Fix it is over, so now I am striving to create “art”.  I refuse to sit like a zombie in front of the boob tube and vegetate, so I paint and draw, write and sew when I can tolerate sitting, and piddle with various forms of other handcrafts that can be readily picked up and put down.  My husband even helps me when it comes to that because you would be surprised how much "labor" there is in "ART"!  

Before, my life was a very physically propelled world.  I was an Upholsterer, Seamstress, Artist and could "Do It" for an army of people, avid co-op gardener, out-door enthusiast, fanatical do-it-yourselfer and a mechanic when one was needed!  I loved hiking, boating, working with my hands, could whip up a meal for 10 people in an instant, “run out” after $200.00 worth of groceries, fix and repair nearly any household disaster, operate most any type of tool and even held a commercial drivers license!  My idea of a good time was a tag sale and run at the flea market!  Now the order of life is… no bending, stooping, twisting, lifting, carrying or pulling!  I used to be a hero, now I am just a zero!  I owned a little Toyota, but it is a stick shift and I cannot push and pull effectively enough to shift and left me terrified I would have a HJ behind the wheel, plus It is very hard to turn my head enough to look over my shoulder. So it is extremely hard for me to get around, I almost always have to rely on somebody else to be with me!  There are not too many things I can do on my own and I had a very limited social life to begin with, now, is nearly non-existent!    

At least I can try to do something in between the spurts of dealing with the demons!  I am desperately trying to find a way to help out financially and help to provide some kind of income!  Now, I have been trying to sew some as well as sell my paintings!  I am so grateful to be walking and using my arms, able to live life, that I feel ashamed to complain about my whinny aches and pains.  I know that some people would gladly tolerate my quibbling pains just to be mobile again!  Still, I must admit, that it is VERY depressing and I struggle not to despair daily.  I try to think of positive things and look for ways to be functional in between.

If you are reading this, then Thank-You!  May only positive energy flow through your life!

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Be Nice Or Just Be Gone! Only Positive Energy Allowed!