Shakey Amy

ok i admit. i try to keep positive. i am an advocate and i am trying to find how to identify myself first and dystonia as simply a piece of me. but i have been dealing with my insurance company-my pharmacy- and the hospital all day. i am now grinding my teeth and crying. sometimes i can't keep calm when things are so messed up.
to begin the day i am in pain. i also have a medication that ran out while i was just out of the hospital from getting the pump. i called to refill it- the doc ok'd it- and the pharmacy said my insurance said no. in so much pain i forgot and left it at that. the medication helps me with the needle like pain in my feet and hands.
I stopped this blog and turned on the video- the tears made it too hard to type- and sometimes it just feels better to talk.
New video posted on you tube. It's raw so don't watch it on a day your mood is already down. It's just me- mad at dystonia and all it brings. The little things to big ones- things you never knew were out there till you get sick. We need to wake up and fix things. It's a true mess.

 IThe I Wanna Be A Robot benefit for medical bills and to promote dystonia awareness- raise money for the Dystonia Medical Research Foundation- AND promote and enjoy local music (Dallas and OKC) and ART is ONLY 6 days AWAY!
Have you checked out the benefit site? www.myspace.com/wannabearobot
Have you learned about Dystonia from www.shakeyamy.org?
Have you contacted Ange to donate ART of ANY MEDIA by THURSDAY AUG 7th for a good cause? angelina.fitzgerald@gmail.com
Have you watched the you tube videos? (Off shakeyamy.org)

HAVE YOU ???
I am so excited! A great night of art and all types of music- custom screen printed limited edition posters- tons of robot and other ins[ired art- TSHIRTS two designs and screenprinted- only 200 total made!
I could go on and on! 

August 3^rd- 19 days after implant

Today was the first real day out of the house. And it is day 4 of the heat being so bad outside that even with the AC cranked I have to sleep in our old bedroom on a pullout. No Silas next to me is weird. The heat in the house so bad I called the AC man determined to have it fixed. Problem? Not enough insulation. I knew I needed it since I bought the house 5 yrs ago but I never had such picky dystonia before either. So next Feb when it is tax return time 11 inches of insulation is on the list. He also said I could use a bigger AC unit but that will have to wait. On to better things... So the Dr. said try some physical therapy. Of course I will get a lot later but my incisions haven't sealed yet to get in the pool. So he suggested walking where there is AC.  The mall? No way! People don't care if you have a cane and who wants to find something on sale and can't get it? So we decided to take a trip to IKEA. 20 bucks goes along way there. On the drive out I was just so glad to be out of the house! But the heat was so bad I kept the window sun reflectors in front of me. I wonder if anyone drove by and thought that's odd. But we made it and dropped off at the entrance I made it inside and though my body said TOO much go home! My mind was racing at all the stuff to look at! A few times I almost fell and felt like passing out but we lasted a good long while and ended with having lunch there. By the time I got home I collapsed and slept for about 4 hours. I woke up for dinner and meds and the pain so great in my legs I had to go right back to sleep. And more good news? This is day 5 of finally sleeping on my tummy which is how I sleep. I have to roll over slow and sometimes position the machine which feels like I am lying on a potato. But it’s better than the horrible weeks of pillow barricades to stay on my side. I'm about to go to bed and my right leg and cheek are twitching Morse code. I know the pump isn't a miracle and it won't stop everything but if I could get the dose to be like the 11 hours I had with the trial-well I just hope I can get there. Granted the day of the trial I could barely stand and needed help to walk inside but I would give up walking to stop the pulling. Seriously. That sounds extreme but relief is all I am seeking even if I have to give up some things. The less pain the lighter the load and with no burden I can hear people instead of pain and I can laugh and tell stories and be me again.

 

i had a horrible fourth. getting ready to go to a friends house to swim i pulled my neck in the shower and my cervical dystonia that had been causing a feeling like a deep migraine came full force and pulled my neck back and right shoulder up. No more leaving the house I had to take my immediate release pain meds and tons of ice packs and spend the evening from 5 p.m. till 4 a.m. tossing and turning from the pain. Today I woke up determined to somehow sneak out of the house without dystonia cancelling any and all hopes of a good day. Taking all my meds we ventured out of the house slowly and went straight to a place for lunch. With plans to find shift dresses I can wear after the surgery to get me to my physical therapy appointments but not touch my abdomen or spine like pants would- well the goal was sort of morbid but i was excited since i hadn't shopped in months. As for leaving the house- unless you count going to work and back- I couldn't tell you the day I got out for fun. I figured out the best ways to avoid my triggers- Keeping the car AC full blast I avoided the heat and was dropped off right in front of the doors. Taking my break through pain meds when my neck began to pull I took very slow steps and breaks in the store sitting where ever I could and drinking the water I had stuck in my purse. I may have taken almost an hour and a half in one store and only in one section but I felt like I has seized the day! Armed with 5 new dresses I made it to the check out counter and was able to make to the car without my scooter. 
Overall a really good day. I got out of the house which I really needed since I have one more weekend before I am homebound for 6 weeks at least waiting for the post surgery healing to finish up.
So by NO means was this like the good ol days over power shopping over a lunch hour but I did come home with a smile.
It is hard when you are fast and go-go-go to suddenly have a body so fraile that one thing can stop any and all of your plans. A simple trip to the grocery store to get bread and creamer can be too overwhelming a task when the pain is too bad or I can't keep my head up or eyes open. Even worse is when I feel up to going to the store at the corner and halfway down the first isle my foot spasms so hard my toes curl under and push my foot out of my shoe- and I am left with the task of deciding which way is the shortest way out the front door? How can I get my shoe back on? And depending on the pain - keep my head down as I drag my right leg and use my cane. Defeated before I could even make it to the first product I was going for. To sit in the car and rub my foot waiting till I feel able to drive the 1 block back home.
These things- the little daily to-do's - and the lack sometimes SUDDENLY to not be able to do them. This sudden change to a calendar of events based only ten minutes in the future. The in-ability to plan anything to do in the future unless I can 100% back out. These things are the things that make dystonia more than a pain or an illness. It's not like the flu. It stays and controls everything. This is what I still struggle with. The lack of freedom. Within my own body.
 

 there is nothing to describe the wait for this surgery. most people get the baclofen trial and then have the surgery maybe 3 days or less later. with the nonsense of red tape and medical politics- with insurance acting as if everyone is speaking in tongues- well baclofen trial in april and now surgery in july. it's hard to "count down" to the event and be excited and hopeful that it will work since the trial worked and AT THE SAME TIME try to supress the urge to look up every possible article and photo of the surgery. patients with a successful trial are given a goodie bag filled with a video,booklet, and an odd notepad in the shape of the actual pump that will be installed in my abdomen. I never read or looked at any of it until about a month ago. The video- somewhat like a documentary and a how to become a millionaire in realestate show on late night tv- was good to watch. Filled with true accounts and positive remarks you can get swept up in the thought life is going to change. then the booklet- counter balancing every camera angle- tells of your caregivers needing to know the signs of underdose. That's right underdose. If the hose comes loose- the baclofen goes all over in my body and i go in a coma- but a kink in the hose and bomb fix it fast by noticing the bullet point signs or death. searching for any thing i could do to counter balance the scary i read and re-read the line "patient in underdose will have a temp of 100.5 or greater". with my meds and texas heat- well i feel hot here and there. 100.5 i don't know. deciding to take step 1 for action i researched the cool thermometers at the hospital that scan your forehead. 65 bucks on amazon 29.94 at good ol walmart. i carry it around and practice taking my temp. like preparing for a marathon.
the foundation said the worst part for patients is waiting after a successful trial- they may wait 3 days or a week and it is horrible. the waiting after you caught a glimpse of freedom from movement. I mean seriously- it's not just my leg and arm- my eyelids, my obdicular(sp?) nerve behind my right eye, my colon, my back muscles, my toes- so many things spasm without people knowing because i take so many meds to supress the movements but it can't stop all of it. for 11 hours i was very still. i was able to move, though slowly, but the peace was beyond what i knew i could have.
here we are waiting almost 3 months after the trial and i feel like everyday i am just keeping the machine moving. going to work, movements, avoiding physical activity and the heat and sitting in my cave house waiting. like house arest but i am stuck in my own skin.
speaking of skin, again another major outbreak of impetigo/infetigo a kids sickness i had at age 4 where your body can't fight the normal staph that lives on our skin. i can't imagine major burns but this is realy close and really gross. I don't know why it is happening except that my body- suppressed by so many pain meds is lacking the will to fight. 
so on 2 more meds and another 100 bucks out the window i hope it clears up or the surgery will have to be moved- and i can't imagine making it even one day later. July 17th couldn't come soon enough.

A dark cloud has slowly been going over my head. I usually can tell when dystonia will be bad- I adjust my life and cancel doing anything and I just do everything I can for relief. But this is different. Yesterday I had to leave work early- tears streaming down my face not from any thought or situation. The tears just flowed because all day I was in pain. Working hard at work and the office I was in too warm it doubled the situation until throwing up in the bathroom with shakey lips and eye I had to go.

When it gets bad I can take more meds because I take as little as I can to get by. But when I take the normal doses of the meds I become a marshmallow and spend the rest of the time trying to remember what I am doing, becoming silent in my focused thoughts on my task at hand, and fighting every minute to not go to sleep. So I went home because this was a pain that was everywhere- it wasn’t my back or neck but a pulsing pain my entire right side. Home I took my meds, ate dinner, and began with the list of things to do for dystonia. A hot shower relaxes my muscles but makes me weak so we have shower bars all over to get me out. Then stretches of everything I can move as slowly as I can. Then a large ice water- two heating pads- and my weird thing where I put my legs in it and it pulses increasing circulation. It makes my legs and feet feel better but the vibrations make my lips and eyes and hand keep shaking.

Yesterday wearing the only pair of 9 ½ shoes I have (I wear 8 ½) it took all effort to get my feet out of them and my feet had marks from the shoes. Edema was noticeable on my feet and hands and lack of ankles but it was everywhere. I take water pills to combat this problem which is a side effect of the medication but it wasn’t working.

The tears flowed not out of sadness but pure pain. Like being in some contraption pulling every muscle I just had tears leaking out of my eyes from the feel of it.

I woke up this morning hoping the extra rest and pampering would have calmed things down. Sitting with my morning coffee my robe on my left arm made of that soft yummy fabric felt like it was ripping my skin as it slid down my arm. There was the culprit. I have impetigo again- the worst spot was a few months ago on my back. It was about the size of a dine and I couldn’t have anything touch it. While it healed it was so deep it took that part of my tattoo off forever. This thing on my arm is the size of a quarter. I put the medicine on my arm but here we go- another call to the doctor and at least two more meds. 150 dollars out the window because my body’s immune system can’t fight the staff that naturally lives on all our bodies. It’s a kids disease and you can get it from several things that are gross. So that’s cool when people think I got it from a gross thing but it is because my body is so messed up.

As for the pain I feel the same as yesterday and there is a part of me I have to fight that wants to just crawl back in bed and sleep because momentarily it doesn’t hurt- though I do wake up a lot and I am instantly reminded.

There are people who are amazed how I go to work, how I walk with a cane or in my scooter and keep a smile. I have to- I feel a need to keep going and not try to hide from the pain- it’s there if I am at work or home so being around people is good. But when it is this bad it is hard. It is hard to say hello. It is hard to do work or focus on what I am saying. These are the days I don’t like. These are the days I am hoping to pump surgery will relieve.

There’s a lot to do before the benefit and I didn’t know how much goes into all of it! But I can’t even begin to explain how this- just the planning has added a positive chapter to my life. People I don’t know- never knew- are finding out about dystonia and are helping by donating their time their talent their brains and their sweat just for this fight. Sometimes when you have a chronic illness your life can be full of shadows. Trying meds and side effects. Living in texas where the heat - even just walking to the car- can make me have a dystonia storm- leaves me staying indoors. Though even though I want to run to the store I can’t. sometimes I get crazy cabin fever but usually I don’t - knowing that the fallout of getting in the heat or doing physical activity will increase the spasms and the pain I know I would rather be at home. The worst part of it is when I have a bad day and trapped in the house I don’t even have the balance or strength or patience to do things around the house. It would be ok if I “didn’t have dystonia” as long as I stayed at home and in the ac- but that’s not how it goes. Dystonia and the meds make it where it is always bad- the option left is what do I choose for the day and will it make it worse?

It’s not only being trapped in my house but also in my body. I can be doing something small like putting up the laundry and suddenly my hand won’t unfold and I have to go sit and relax. Repetive motions (like walking with my cane) can sometimes leave my hand shaped like it is holding the cane. It’s a wild roller coaster that never let’s you off to go get a soda and hotdog.

I know even doing this blog will take something off my to-do list for today. Imagine with every step that you take to go do something suddenly you may have to stop. Projects you have planned have to wait till your body says ok even if you have the time. What drives me nuts is when I know I have to just stop moving and it affects my eyes. When your eyes close- my right eye first- what can you do? No tv, reading, nothing- so if it doesn’t pass then usually I just have to take a nap or go to bed because when dystonia forces my right eye shut then the meds say you are sleepy.

Here is something that I can’t roll with. I am a fighter. I know that dystonia is putting limitations on my body and activities and my every moment. But the thing that is really bugging me is my body. What I mean is I don’t care if a med makes me gain weight if it works and gives relief- I don’t care that baclofen is making my feet swell now a full size bigger. What I do hate is when I get ready for work or something and nothing fits. Not a shirt, a pair of pants, and even all my shoes. If I wasn’t in so much medical debt I could deal with it. I could go and take a good day and go shopping - something I love. I could go and get 5 more pairs of work shoes a size bigger. But I can’t being financially paralyzed from being able to roll with the physical changes is beyond frustrating and it’s not like I can say hey my feet are a size bigger I will exercise! Edema is water all gathered in a spot. Take water pills- well that helps but it has it’s draw backs as well. Not to mention I don’t see the changes but when I see a picture and I don’t even see myself- I see my puffy eyes,my face bloated like I am pregnant, my whole body a marshmellow- well it makes me sad. It’s not anything I can do with exercise- and by the way any cardio makes my dystonia flare up. And most of it is from water weight from the morphine (which makes it where I can get to work each day) and the baclofen which is keeping the spasms to a minimum.

Again I don’t feel depressed like oh look how ugly I am- I just hate I can’t go get the clothes and shoes I need to deal with it right now. That’s why I am excited for the pump. I will take tons less baclofen so less edema and I don’t think I will need the morphine after I heal from the procedure. It’s just this time right now that makes me cranky.

I get the procedure done July 17^th at 7am I get prepped and 8am I get it started. I am excited for the possibility of relief and alittle nervous because I have watched to many darn medical shows. J but all that aside- if this works well everything is worth it. The ups and downs. The moods I have been in hurting so bad I am not so nice at work, the clothes and shoes problem, the loss of so many friends from them either not understanding when I break plans or not being able to go run errands or hang out. If in the end- on the other side of this procedure after I heal- I will be able to fix the bridges I burned with coworkers who would forget I was in a pain too much to bear, I will not have lost the friends I had but gained so many who are helping with the benefit and who have given me the rights and room to cancel plans or suggest everyone meet me at home. I have learned so much about myself and about people. I have seen people with hearts so big and people who couldn’t wrap their head around a new amy that they had to step into the shadows.

I have had to learn that if I can’t do chores then I can’t. that things I did to relax and have fun can change. That a life without going out every weekend or seeing live bands is something I have had to let go but I still found new ways to enjoy life. I have had moments where with my eyes swollen shut or pulling down I just lay by the window and let the summer breeze blow on me and cry about everything and nothing and think about memories and possibilities. I have - with dystonia- been forced to change my entire makeup. Before I did all my work and more, I always had too much on my plate and would push myself mentally and physically to get it all done. I made commitments I sometimes did out of pressure or obligation that I now realize I can do if I choose to or not. I have had to learn very hard lessons like relying on others does not mean you are weak. That not doing everything on your to-do list does not mean you have failed perfection. I have had to make mistakes- because of the pain,the meds, the dystonia,the fatigue- and except the consequences . I have had to learn that asking for help is ok. That it does not mean my character is weak.

Chronic illness means that life lessons are every minute of the day that’s all.

just a quick notw- unable to keep my eyes open and my right hand going flat making typing harder I had to post the baclofen pump surgery is set for July 18th!
thank god- just having a set date makes the day to day easier!

What to say? where to begin? the baclofen trial in april went well. then finding the top programmer for the pump and the best dr for the surgery i worked hard for THREE weeks to get an appointment. I go see the programmer on 5.26 and after an hour- basically here is the low down.
1.She needs to get my neurologist to agree i need the pump and to go over my medication regimen. (I no longer have a neurologist i see. The dr she is referring to is someone i went to for a consult on dyskensia- she got me a rfl to the dr to see for that in georgia- the end.I have seen her once for that consult and she does not manage my meds.-I told her the dr i see outside of this hospital for all my meds and monthly check ups. She said nope.He is also the one who did the trial.)

2.She then questioned why did i have another dr do the trial and now want them to do the pump? I explained that he did the trial because he knew i needed it based on results of taking oral baclofen and seeing my condition improve-seeing me as a patient over a year. I told her he had a neurosurgeon lined up but couldn't do it till June and he felt that was waiting too long. I would have waited but thought i would try to see this dr for several reasons the biggest being this neurosurgeon has done over 100 baclofen pumps and that's a big plus for me. She then said well had you gone to this dr who would have done the programming of the pump (which is a long process finding the right dose with sometimes visits 2 times a week and taking up to a year to find the right setting) I didn't know. She gawfed.

3.Then when the neurologist who is not my neurologist (and by the way wouldn't even give me a rfl to see this dr for a simple consult) agrees to the pump. I will need to meet with a psychiatrist to understand how drastic my life will change etc. (at this point tell me i have to remove my right leg and become bionic but not suffer like this i would do it) AND THEN HERE'S THE BIG ONE......
DO THE BACLOFEN TRIAL AGAIN! Why? the first was a success. because they didn't do it and it was done differently than they would have done it. AWESOME indeed. Do you actually think my insurance will say well heck you wanna do another procedure AGAIN that cost over 28K dollars- sure no problem! So there's a big problem right there.

4.If the 2nd trial is successful then i meet with the neurosurgeon to plan when i get the pump.
5.Then one day i get it.

Knowing the obstacles above now instead of june maybe IF SUDDENLY THINGS MOVED FAST I might get to the time of needing the 2nd trial in maybe 3 months. As for the 2nd trial no way my insurance is going to pay AGAIN (not to mention my part of paying it is alot) because they want to do it their way. So let's say that battle begins- if somehow it works  out what maybe another 6 months. (It took my insurance 3 months to approve the first trial). 

The point is healthcare - and doctors- and everything - well it's not about seeing someone who needs something and would have a better life from it- AND DOING IT. It is about procedure and protocol. Who cares how long. No one thinks what will ShakeyAmy do in the meantime? SERIOUSLY because of this mess I now am going to go back to the other neurosurgeon and check out their credentials. I may get half the knowledge or care or whatever- but what do you do?
I am going to proceed with the hoops. She said she would call when she got my neurologist on board. I am giving her a week and in the meantime finding out about the alt. route. How sad that at the end of the consult I was told I was strong enough for the pump (not alot of muscle weakness which the pump would add too) and that WITH THE PUMP YOU SHOULD LEAD A NORMAL LIFE.

How can someone say that and know getting the pump isn't even 2-3-4-5 months in my future because of steps and procedure and internal protocols?
It makes me sad. I still like to think doctors became doctors to help people. To find ways to make patients life better and to do things as soon as possible to relieve pain,suffering,or the problem itself. Some doctors are like that. The dr that did the trial is one. He did the trial because he knew i needed it. Granted he can't do the pump- but everything he does is to try to make my life better and his MAIN GOAL is to make me not a patient of his anymore. Isn't that how it should be?

My head is swimming. I have tons of amazing people helping me figure this out. But overall my sadness comes from a feeling of defeat from "the system" and the saddness that not all doctors have the same agenda.

 So with time off from work recovering from a spinal tap headache- (mild enough I didn't want to do a bloodpatch) I was able to do alot on my sites. PLEASE bookmark www.shakeyamy.org and PLEASE add me as a friend on myspace, my benefit page on myspace, and check out the stuff I am selling to raise money for my meds, medical bills, and the upcoming big surgery. EVERYTHING  is a link off my site www.shakeyamy.org.
You guys rock!
Thank you
P.S. When my right hand decides to cooperate I will be making tiny bags with a cloth ticket to the benefit show to sell on my etsy site for all of you out of Texas who can't come to the show but want to show your support! Keep an eye out and I will have them up soon!
Speak out - TALK ABOUT DYSTONIA!
I have cards about dystonia and my sites- if you need some to pass out email me with your address and I will mail them to you! shakeyamy@tx.rr.com!
Amy a.k.a. shakeyamy

ahhhhh dystonia. so now i have infetigo (a kids version of a staff infection). yes i do take showers- but when your immune system is low the staph and strep that lives on your skin can get in it. it's painful and gross. 3 spots on my face and 2 on my back. awesome. it almost postponed my surgery for tomorrow but i got a cbc and spent another co-pay to get the ok from the dermo. now my doc tomorrow is thinking of doing the traditional baclofen trial where they inject alot of it in the spine and see if it makes you stop moving around- i would prefer to do this trial so i can qualify (hopefully) with the insurance company to get the baclofen pump but the problem i see is that testing a large amount of baclofen and watching me for a few days in the hospital isn't going to give me the conclusion that it will work day to day. The reason i say this is that my attacks come and go. I can trigger them by holding muscles certain ways, sitting for long periods of time in an uncomfortable position, or if i do tons of physical activity. Laying in a hospital isn't really a chance to see if the meds will work when a dystonia "storm" tries to pop up. but on the other hand, this is chaper- less painful and the quickest way to get to the next step of getting the pump. 
the other way we org. were going to do it is attach the catheter/tube into my lower spine/sew it to surrounding muscle- and have the machine outside of my body and wear it for a week. This would of course be hard to do and a long week of trying to lay on my tummy, and keep the dogs away from the tube itself BUT it would let me move around and see if when a storm came if it would stay little to nothing  because of the baclofen. i could really see if it would provide relief by a week trial. the cost i am sure is outragous but it would give me better feedback on if the pump would do the job. when the tube was removed a week later i would have a spinal tap headache until we could do a bloodpatch procedure. which also is beyond icky.
but no matter which procedure we decide to go with hopefully the pump will turn out to be a benefit and i can get that procedure done (major) before my trip to georgia to see if because my dystonia comes and goes if it is dyskensisia or PKD or PED- which is all i need to be diagnosed with so doctors will understand why some days dr visits i seem fine and other visits i am a twisted mess.
either way i am glad to be doing something. the side effects from meds and the day to day drama with my body is getting to be a major physical and sometimes mental burden. 
i just want something to work. to slow down or lesson the attacks and hopefully make the major episodes fade away.

Baclofen Pump Trial- begins in the am discharged from the hospital the next evening. Not only got approval from insurance (finally) but also got a phone call yesterday during my ONE meeting at work on Mondays! It was the doctor and when i called back after the meeting they were closed.ugh! So i have to make the call after this post and hear,possibly, the date set for the surgery. I am nervous, relieved, excited, and terrified all rolled into one. The side effects and possible complications out weigh the possible benefits- and i like that this is a trial and reversible.

so the phone should ring soon from the hospital to set it up. i have been waiting for this day- to know everything is set up- and though normal nervous i am excited that i may require less baclofen and stop all these oral meds finally.

i have researched out the wah-zoo and felt comfortable about the procedure but with all my websites below i have had countless emails from dystonia/essential tremor/dyskensia/myloclonus/PKD/PED/spinal tortocollis/ (all things i have been diagnosed with except PKD-PED which is why i am going to Georgia in May)and other chronic illness patients from all over the world.My videos have inspired messages of young and old thanking me for being an advocate. countless people have emailed me about their story, their frustration, and what's worse is many of them have given up-stopped treatment out of no success and doctors looking at them in dispair and without answers- countless emails of people who "got" dystonia secondary from horrible events (i'll tell one story later that still haunts me). but i got an email from a girl who has had dystonia for 10 years and is 27 and she said the baclofen pump helped with tremors but several times she has had to have her cathater replaced (i am assuming that's the tube in her spine?) she also talked about how the tube leaves a large hole and once removed she had spinal fluid leak out and the DREADED SPINAL TAP HEADACHE! (as you all know those were dark days from the friday of my bad spinal tap until the monday following where they did a bloodpatch and filled 5 holes in my spine to sto[p the leaking. They should NOT call it a headache it should be called something like a brain hammer. remember those days i had to lay still and flat and drink water out of a long straw constantly which caused me to always need to go to the bathroom? though the walk from the sofa to the bathroom is maybe 20 feet i couldn't stand it and would crawl on my belly trying to stay flat- then scream and sob and cry when i had to situp to go to the bathroom. seriously- worst brain pain ever- not a head"ache" by any means.

so with her email and list of concerns and "fallout" from the procedure i am now filled to the brim with worries. i know i can't do anything to stop what happens. i know in my heart i have to do this. those of you who know my strengh and wonder where it comes from- well it is fueled by CONSTANT HOPE i can gain even half of my "old" life back. the hope keeps me going. the millions of people going through the same thing without a AWESOME support group like i have (both friends, work, husband,family, and my dystonia support group friends) is what keeps me going. i have to keep trying to fight for my life back. even just some of the normal parts back. i have to try things not only so i feel i am still fighting but also for all those people lost- who email me- who are full of dispair- who are searching for information to find an ounce of hope for something ANYTHING that will help them get a piece of their life back as well. so i have to do this for them as well as for me.

maybe the trial will show the pump won't work- but what if it does provide relief? what can i say against it? it is reversible (a major factor for me) and there is a chance if the only thing that changes is less meds and hopefully from less meds less sideeffects- well i can't lose my fight for hope.

i am starting to save my posts- the countless replies. the endless stories and one day i am going to put them all together in a book. there is not enough out there beyond the basic description of dystonia- thankfully i feel like my grad school journey to become a therapist is coming full circle. i write for my therapy- my well being- and i am being told by strangers on all my sites that they no longer feel alone.

having dystonia is enough in itself. having the loss of friends- no support system- no answers- no one to talk to about the tiny things, the weird things, the circles and circles of intertwined events that affect dystonia patients in every aspect of their life. you can find tons of medical information but where do you go to ask if other people are peeing their pants? where do you go to talk about the meds making walmart shopping seem like being in an outdoor market full of chaos, noises, and feeling like a tiny speck in a fast paced (sometimes rude) world? that's right- self promote insert here- my blogs and websites. i lay out my embarrising moments- and in doing so countless replies from total strangers flood in saying you too? i thought i was alone.

this is what the dystonia community needs. a space to talk about the big and little. to vent. and i learn tons of stuff everyday! Who better to ask about the "fallout" from a med or a procedure? A doctor or countless people living it right now. It's funny but all of the people i have met with dystonia- it's like we are XMEN- among regular people some of us hide it- but when we get together the walls crumble.

long post but i wanted to say hello to everyone and thank everyone who has been there pushing me to make my voice heard. to dystonia into a platform to stand on instead of a box to hide in.

cross your fingers that it works. less meds is a dream of mine.

shakeyamy

 i have much less uncontrollable spasms like the videos- unless i do alot of physical activity. I think i am still having them because my muscles are like bricks- but i think they are on the inside if that makes sense.I am on enough meds "to down an elephant" but i think that's what keeps me still. i hate being on all the meds which is why i am hoping the baclofen trial goes well and i get approved for the baclofen pump- that would mean less baclofen because it goes right to the site (in the spine) and if i have to i can have the machine give me the pain meds as well.I just want to be on less meds and also not have to take them all the time. Right now- to stop the violent movements and the pain (on a 1-10 scale was usually a 8-10 every minute) i am on 60 mg cymbalta (now also used for depression but i got it for neuropthic pain in feet and hands- they org. gave the med for diabetic patients with pain there. 60 mg clonazapam (klonapin). 60 mg baclofen (the highest dose you can take orally- it was when i went from 30 mg to 60 i noticed a drastic change in the spasms or "storms" not the pain level though- which is why i asked about the pump). 120 mg kadian (time released moraphine). and breakthrough liquid moraphine sulphate for when the pain "breaksthrough" the time release meds.
i used to lose bladder control on certain meds but that is under control. so no more of those meds (detrol). but with all the moraphine i drink coffee and high energy bars as snacks to keep somewhat awake since i work 45+ hours a week. also big side effect of moraphine is not being able to go to the bathroom- good times. so with short term memory i forget until it has been like a week- then take miralax several days in a row. with the random edema (retaining tons of water) which started in my feet and today was in my face- i have to take a diaretic (which is over the counter and says don't take more than 7 days- but i take it every day- 3 of them) so with that i have to drink tons of water and i am always thirsty with dry mouth- so i take stool softners everyday, liquid vitamins because my body won't break down the huge pills (natures plus has been the best thing ever and has saved me from when everyone gets colds/flu etc. at work) so i take that everyday because i am low on potassium. i keep a change of clothes in the car and only wear flat shoes now (which looks so silly with suits!) but my toes curl and i walk on top of my toes on my right foot. This means all my toe nails have gotten thick from genetics/evolution saying well nails thicken you must be a shoe!) so that means nail thinner on the tops of my toes at night, icey hot, a machine that squeezes my legs and circulates the blood, and every night sleeping on a heating pad because something always hurts. my body is so jacked up from the meds my period can come and go with no schedule and sometimes it will be so late then i get cramps (which i never had before) so that means buying those therawraps for my back or stomach. when i lose more than 20 lbs of my target healthy weight i go back to drinking boost drinks (like ensure) but i don't take them everyday because they are so pricey. i have a membership to a massage place because the massages at physical therapy was too far to drive and always during work hours and this place is open late where i can get a ride or go after work saturday or on sunday. tking all the diretics makes my hands so dry like sandpaper i scrub them and put tons of lotion on them when i go to bed. ahhh, chronic illness- the cost to maintain the side effects to still be able to work cost as much as the usual medical bills.
so in a long rant- no i still have it. but i invent or figure out a way to fight back the side effects.
sorry to be alittle graphic here about going tot he bathroom and such :) but i bet you understand and if there's anything i have learned holding anything back about this illness can only create shame or have somebody out there in the same situation feel alone. you know?

I think my dystonia was either cause by a jerk D.O. who did a bad spinal tap and from that procedure when he hit my nerv root sack after 5 sticks with several sizes of needles my leg shot up. twitched ever since- but has progressed rapidly. There was no legal recorse for several reasons. 1. no documentaton or medical proof that caused it 2.in texas we have 2 years "from date of injury" to prove prior to trial that that is what caused it- and it took about a year and 2 months to get dystonia as a diagnosis. I only hope he is unemployed and very very sad. ugh! No doctor believes that was the cause- but that was the exact moment it started.All i can think is if that wasn't it then i had a dormant dystonia that "woke up" with the procedure.
ok, long long email indeed. Email when you can. I have to stop, my right eye won't open so no more computer time for me.

time has gone by and i wake up not knowing what happened but searching for my small calendar to see what day i am in (not marked with a big X) and see what lays ahead. Having limited short term memory is something i am adjusting to but it still haunts me somedays to cause a mucky mess. usually just at work.someone passes me in the hall at work and asks i do something- in a normal response i say ok and before i can turn around to do it i end up forgetting what it was and depending on the time of day- even who said it. at home it is easier to survive the memory loss. everything in my "home office" is taped on the wall- important do-or-die todo's like bills and passwords lay blaring in my face in bright colors. slowly every part of the house is being changed to fit this transition of out-of-sight out-of-mind ickyness. 

i know, i know, people say i do that too! when i mention a recent trip after work, tired, but prepared to go in and get a new coffeemaker since ours had broken and without my morning coffee and NPR i would be lost.I go into walmart and see a pretty display of easter lily's and smell them, see the pollen on petals, look closely at how they are made and am wrapped in the moment. An anouncement at blaring volume declares keep your children with you and i am brought back to the fast paced maddness that is walmart and i stand up, holding my right arm by the wrist to stop the pain and forget why i am there. i used to panic. one time- early in the loss of memory- i went to get lunch at a place inbetween work and home but off the normal path i take to get to work. i had only been there a few times so the route was not burned inside my pathways- i made it there but after getting my food i pulled out of the parking lot and everything looked new. i had to decide which way to go.a person in such a hurry honked when i had a chance to pull out and i was faced with turning or jumping with every horn honk. i turned the wrong way and though it took me 10 mintures to get there (from garland to dallas) i called work 45 minutes later driving by a water tower that blared mesquite. I got directions - and got my bearings. when i hung up the phone- not 2 mintues later i was again feeling that creeping feeling of being lost-the unknown. i couldn't call back out of pride and embarrassment so i just felt the tears come down my face as i turned here and there and almost an hour and half later made it back to work. the food had soaked through the bag and as i walked in the calzone and sauce escaped the bag and spilled all down the carpet. i began to cry and rub the sauce to hide everything- being lost, being afraid, being ashamed, being tired. this was when being sick wasn't really "out" at work so i just looked like i was crying over spilled marinera. 

back to walmart- this was a few days ago. now when i know i am lost or my memory cant connect i don't panic. i took a basket and went out to the walmart garden center- less people and quiet- i walked around and picked out tiny flowers to plant in my garden at home and waited until i figured out why i was there. thoughts started like this...why would i come here after work when i am more tired than ever? it must be something i have to have by tomorrow. it is something i am out of. it can't be deoderant- toothpaste-socks. what can i not be without even for a day? and after about 25 minutes of letting my thoughts wonder- i remembered coffee pot. no pen in my purse to write it on my hand i walked back into the main part of the store moving my mouth - coffee pot-coffee pot-coffee pot all the way until they were in front of me.
i am so lucky i don't care how i look or am perceived by strangers anymore. i must have looked silly dragging my right leg whispering but i was on a mission and when i am on a mission i don't see anyone around me.  i think losing the care of how people see me (which in our culture is the top selling notion in media) was washed away because i am at work so much. i "got over" how people saw me when i had pain that dulled out the eyes of people looking at me. the days it is bad i walk through the lobby reminding myself to keep cool, i contract and hold all my muscles tighter to try to minimize my uncontrolled movements- i pass 10-15 people and say good morning and when i make it to my office i collapse from all the effort to not cause alarm among staff or people in the lobby. the employees i work with did a strong and amazing job of making me riding my scooter no big deal- though i know when i wiz away or ram it into on of the cubes they all look with a side glance with worry. but they made me feel like i was lucky to ride a scooter, they made it seem seamless. it helped for me to feel a sense of normal-cee being a young person on a blazing blue scooter. 

i always take a picture with my phone to send to my husband if i feel funny or to tell him through a picture how i feel and when i turn the phone around- sometimes i see myself right then- i see how sick i am- i can see the differences. the dark brown around my eyes, my lazy eye barely open from the meds, i see the wash over my skin from moraphine and tranquilizers to keep me from moving without my consent. i see that i forgot lipstick and my lips are so pale they blend in with my skin. i see a hollowness of being asleep in a body still awake. i am reminded of my hand moving so fast or being unable to do much so i opted out of tasks like masquera,earrings,or a necklace i remember i like. i am reminded that the people i work with are kind to not mention i look like a melted pancake. and it makes me full of love and saddness, strength and despair- all at once.

having a chronic illness where each day is different than the last. where i can have 2-3 "good days" where i don't notice the pain or only small twitches. and then suddenly i forget i am sick- and i run around from office to office handing out reports, or talking alot, and go home and put up laundry and do a project i have been wanting to do- and the next morning the day starts with a feeling of eggshells. hard to put on my shoes either my hands won't help or my foot is again swollen limiting my shoe choices. whenever i have a good day i always over do it with physical activity and boom i either pay halfway through the running around or the next day i am transformed into an 80 year old butterfly.
sometimes i know i will "pay for it" but i do it anyway. tired of being at home and trapped in my body i will take it slow friday and saturday after work and sleep alot. then sunday i prepare by waking up and stretching and sitting listening to NPR and wait till i feel the meds kick in. then i wake up silas and proclaim the exciting things i want to do for the day. Today I want to go get plants and potting soil and leaf blow the back patio, let's go to the grocery store and get food and something special for the grill!, let's go to the movie store, let's go to ikea ("I promise i will go slow silas come on!",then after that let's come home and work planting flowers and making borders and pulling weeds, then lets go wash our cars!!!! I get so filled with happiness at the long list of things i have slept and prepared for. Either i make it through half the list and then we have to turn around and go home where i crash and go to bed- or in a way- worse i make it through he whole fun list and when i crash into the bed i know tomorrow will be a long day. but i always smile because though i know i caused it by doing too much- i enjoyed every minute of it.


People say amy why did you do all that you knew it would do this to you! but there are so many factors to the maddness. one- for myself and my needs - i get tired of feeling like the only constant is getting up for work and coming home from work and hopefully having at least 2 hours to spend with silas and the dogs before i go to bed at 9 or 10. the over-and-over page turning boredom of same after same is relentless. but also- remember who i was. i was an independent woman. i have travelled all over the states. i used to sell everything except what fit in my civic and move for adventure. i up and went to grad school and did a thesis no one would dare to attempt. i bought a house and every weekend would paint a room, install new doors, crawl in the attic crawlspace with a headlamp and a backpack and install new lighting. i would rewire old lamps from thrift stores and go to yard sales and buchanons at fair park and find things like old tvs and lug them home and figure out what to turn it into. i would be tired of all the work and no play so i formed a group of friends who would meet every wednesday at a different bar early in the evening where we would talk endlessly about physics, philosophy, and politics. i would hear of a new local band and go. i would brave new areas in dallas and find tiny treasures. i was always full of energy and always ready for adventure. i miss that. i miss knowing my freetime from saturday at 2 until the end of sunday  is limited- when before it seemed endless and jam packed. where before i didn't have to think of physical limitations- only financial or time- now i have to always check in with my body and make sure i stop sweeping dog hair out of the corners of the living room if i feel dizzy. i have to tell myself to sit down and relax- when it goes against my personality- all i want to do in those precious hours on the weekend is go-go-go. 

i think as you get older- you slowly learn limitations. i think people who are young would understand how i feel like this. you know when you have the worst flu ever. after about day 3 you get cabin fever and long to do anything except look at the tv or keep laying blowing your nose and waiting. when you have the flu the walk to the bathroom is draining. filling up your cup with ice water is combersome and everything feels heavy. after the flu/sickness seems to be lifting- lets say after like day 6 of 14 day antibiotics you get that feeling of bursts of energy. you realize the fog has lifted and itching to get out-of-the prison on couch,tv,and blankets covered in tissues you get dressed and prepare to go and do errands. after going a few places you suddenly feel ten times worse- you realize your body felt better but it was still too soon to push the envelope. you should have stayed home and rested just a few more days.

this is what my life is like. either i have the knockdown flu and cabin fever- or i feel like the fog has lifted only to realize it was too much too soon.

this endless cycle of fighting for fun time is what i still can't get used to. i can't stand that i have 1 1/2 days and always a list that fills 6 days of to-do's and never enough time- and usually never enough energy. 

now the other factor that comes into play is my husband. my life. my partner and friend. i make sure he gets out he sees bands and sees friends and runs errands when he has cabin fever. i make sure he rides his bike and takes time on his free weekends to let work roll away. but sometimes i feel like the beautiful fish in the fish tank, make sure you tap the glass you feed my in the morning, make sure my glass box is clean. sometimes i feel like a morphing painting of sometimes a girl sometimes a woman placed around the house with endless wishes and stuck in the borders of embellished wood. so i want to spend time with him. not to-do list or tv watching time but walks around white rock lake holding hands and talking about flowers or singing a classic 80's song and laughing. taking moments and putting them in my pocket for when i rains. i have to get out sometimes so we can see eachother away from the house, the canes piled by the front door, the never ending laundry. so sometimes that's why i over do it. i think of things i wish or would like to do and i make sure every minute i try to push away the pain or not look at my mouth pulling down in the car mirror. i try to just let it go even if it is knocking. our marriage is not falling apart from this sickness but i can see how people can fall apart when a partner is stricken with a chronic illness or something serious like cancer. if you live with eachother and have a certain routine and then it is haulted- if you don't work with it as a team. if you don't communicate. and if the love was based on who you met and married or live with and not the ever evolving changing person that should grow with you- well i can see how it could happen. i think alot of people fall for each other - and expect that moment to continue. i think if you don't always grow, always fight to grow and change- if you always expect that "fun guy you would party with" or "that girl who was so skinny and hot who always laughed at your jokes" well i think that's why people fall apart. break up-divorce- whatever.

thankfully i met someone who has been overwhelmingly shocked in his life with change. and over time he has adapted into someone who doesn't fight against change but one who expects it. not in a bad way- but more like less of a shock. rollin with the punches and adapting. and with each punch to his gut he has become more hyper aware of things he values and in doing that - no matter what happens he holds it dear. change for silas is something he expects and in a blink of an eye he adjusts.

he met me when i was done with dating. he met me when i had accepted who i was, and not amuzed by the "sameness" of life. he met me when i met life with no boundries. where i made life interesting when at times it fell flat. he met me when i finally was at the place where (not in a sad way) i expected nothing from anyone and expected alot from myself. 
we had time to talk about how our lives had unfolded. how we both found out that life really is how you look at it. and we had long discussions where he knew all i expected from myself was to always learn and grow and discover new things about myself. he got it. together we made a pact to never stop learning about eachother and about how we see things. the hurdles we faced not 4 months after meeting when i got sick- he handles the shock and helped me to slowly give up control of my universe. he held my hand as i became aware that i before created change and now was faced with change i didn't want and would never chose. he held my hand as i kicked and fought for independence, i fought my body, i fought the situation,and i fought him trying to help. and now i rely on him, and i don't feel like i rely on him out of weakness in spirit but in relying on him because he knows and i know i can do it but if he does it it saves my strength mental and physical so we can have time together. he is learning that it is ok to take care of someone,and it is not a weakness or "superman complex" but an act of love. that putting up the laundry isn't a dreaded chore but a chance to make me smile and to allow us to sit on the back patio and talk endlessly about nothings and somethings.

so today was an emotional rollercoaster. I finally stopped playing phone tag with an agency that pays for medical trips in full.Thankfully it was easy to sign up for and the flights i needed were available for my doctors visit in May. All I had to do was get the fax number for my neurologist and some other  information to the agency. Then all done and soon when the doctor sends in the fax I will get the tickets emailed to me- for me and the person travelling with me. (I can't do the trip alone since i can't walk alot- or fast, things confuse me like trying to find my gate, and there's no way I would rent a car.) With no short term memory we all learned a longtime ago that i can't go to a doctor's appnt on my own because i come back and can't answer anyone's questions about what was discussed or what happens next. So I always have to have someone go with me.

So I (thankful beyond words) have the plane tickets from texas to georgia covered which saves me 1400 bucks. Not to mention it was really looking like I would have to go by myself because of the cost of the entire trip so it has been on my mind every second. I have signed up to millions of sites to find out about any and all travel deals to try to make this work. So after the call tears welled up and I couldn't even believe it happened.

The other thing that has been haunting my mind is when is my first surgery for the baclofen trial? i was told about 2 months ago it would be no problem and be in 2 weeks. 2 weeks went by and insurance held it up.I had to take a bubble psych test from the insurance company to make sure i really really needed and would benefit from the surgery. getting the test in, taking it, and getting the green light all took another 2 weeks. 

I went to work each day trying to always tie up loose ends and be prepared that it was coming up any day. So since my phone was on vibrate I missed several calls today- one was from the doctor confirming my surgery is tomorrow at 3:30. Tomorrow. Thank god I am married and there is someone to feed the dogs-too last minute to get a dogsitter. I don't know what prep, if any, is involved- so i just got the message at 9 and figure i should just have black coffee in the morning just in case.

There are some sites online about the baclofen trial though most deal with the actual pump itself. so i have two versions: one is from a dystonia site saying the trial is where they inject me with bacllofen after numbing the skin- into my spine and then watch the reaction for about 4 hours. it says i am in the hospital 2 days and then i go home. If the results are positive then i am scheduled for the big surgery soon after.

The other site says (now it is talking about palsy patients) go in- get the injection- and are discharged that night and get the pump a few days after. Followed by (after the pump being inserted) tons of physical therapy and speech therapy. 

So I don't know- and it was such a happy day- followed or ending in weirdness. Should i take my meds in the morning? Do I eat breakfast? should i pack magazines i am behind in reading and a chage of clothes? The list could be endless. Thankfully my night meds have taken hold and i am not nervous but more sleepy than anything.

It's a big day at work tomorrow so i have to be there at 9am vs 1030- and i guess i just keep calling the doctor to ask what i need to do to prepare.
Life is such a jumbleness of weird events- i can only assume tomorrow will be as odd as today.
wish me luck!
Amy

So about a week ago I noticed socks hurting my feet. Peeling them off like a second skin the ring of the sock embedded in my leg. But then the feet felt like I had walked all day on cement. the pressure not relieved by massage. Mornings outfit after outfit changed because no shoe would fit. Now I am down to wearing one pair of shoes a size to big day after day- weeping for the loss of high heels a year ago, buying every color of flats, and now going up a half size- almost all the shoes gather dust and hope for the chance to leave the shoe closet and gasp for air and fresh light. Yesterday-perhaps the day before- I noticed my feet puffing up like a blowfish. My toes beginning to look like tiny nubs at the end of a puffy claw.  Last night I get out my new foot relief lotion to try to tame the foundation of my ability to walk with a cane... TO MY SURPRISE my foot (right of course, all my dystonia is on the right) my foot was gone! And in it's place a foot of a troll !!!! Yes, no ankle and my right foot so think no arch to be seen. Rubbing it wasn't like rubbing your foot after a long day- it was like rubbing a whoopie cushion filled with pudding. 

Yes I am being alittle gross. But you get the idea. Freaking out (thank god for late night WWW) I google Baclofen Edema- and up pops about a zillion sites with side effects of the medicine that I take two times more than the normal dose for my tremors. What has given me less stroms, less twitches, and more time to be still- has a side effect of edema (fluid built up in my foot and ankle)...

Great. So I trade one thing for another. Now you want to say to me- Amy a swollen foot and no ankle is better than uncontrolled movements all day!!! Yeah, but think about it. (Women out there you'll understand) I work a job where I have to dress professional. It took a year for people to see someone in a suit with flats and get over that. (Mind you all my pants are seemingly too long and should be altered because I don't wear any heels). The cost over the past year to try to add as many flats that are not flip flop looking has been about 500 bucks... now I am faced with one foot a size bigger than all of my shoes- both the heels and the replacement flats...

So now I have to wear the same pair of shoes that look like house shoes. Black of course. Which means not wearing 2/3rds of my clothes. (I'm not wearing a cute off white and gold shift, off white sweater tights- and black shoes!!!)

So this is what I mean about "behind the secenes" living with a chronic illness. The costs of doctor co-pays, treatments, food supplements like expensive boost, other meds and treatments for the side effects of the drugs i am on, the canes, scooter, knee brace, wrist brace- all that we think of. But you don't think like when I went from size 10 down to a 4-(working the whole time so needing to replace pants for smaller ones) to a med that made me gain weight (again more pants and clothes) down again - replacing the heels, now needing an all new size- the twitching in my eye so needing new glasses prescription- on and on and on.

Anyway, that's where the debt comes from. From the reg. medical expenses and everything that happens "behind the scenes"... crazy. I have to go see a specialist in boring Agusta,GA and have to pay for a ticket etc. for someone to go with me- so I am looking at a trip that will cost around 1300-1400 dollars. Good times. 
I am going to try to add a gro-die picture of the foot trapped within a bubble.

 how can i b at work and suddenly wonder if i am wearing the same outfit as yesterday- to discover it is the same day dragging in the mud? my husband laughs but every friday i trot home having found a spare minute or to in the work day to write a major-too-big-to-do-list. it always is compiled of the obvious (change kitty litter, do laundry, feed the dogs-) so i have simple things i know i can make a big line through. but on the other end of that extreme i begin adding small to major projects and have a few over-the-top items like seal the granite tile or repaint the office on there. i think i have always done this. blinded by the obvious and limited on energy i know i have to write every thought i can on this scrap of paper or coffee napkin afraid i will wake up relaxed and have nothing done as monday slaps me on the face. that is something i still can't do- even though i know if i try to do too much on the list i will become stiff, my lip twitches, my right arm goes numb, or my right foot drags behind me lifeless but still able to transmit pain. feverishly i will try to do a major task on sunday afternoon afraid i will feel helpless if i can't tell myself i did something for me on my own time. and watching a movie or vegging the whole weekend has never been something to brag about. silas moans when i dig in my purse on friday after sending him text msg after txt when i can't find the tiny sheet of paper with hyro-gli-fiks all over it. he says take some time, relax, chill out- but there's this ever present clock ticking inside me making my skin crawl if i am on the couch for more than an hour. this has been one obstacle of many since i have had dystonia. the first major hurdle was letting some things go- to be able to ask him to do things around the house or to ask for something when my mantra is if you can't do it yourself you are hopeless and weak. after a year of attempts to sheew him out the door so i could do everything myself i would not recover from my efforts for days and made the work week ahead more painful and demanding.i have learned to ask for help,to know my limitations (though i still break them at times) and to really take some time to just chill out. i think what it boils down to is if i am at work 40-50-or 55 hours i want to be able to say by sunday night hey, at least this got done. it's like doing a chore and hating every minute of it- but putting on a random album like neutral milk hotel or the cure- and suddenly getting lost in the now. there's something sick in it, but i really take pleasure in doing next to nothing but work during the week and then my to-do's on the weekend and waking up to a clean bathroom and all my socks in a drawer instead of all over the carpet monday morning. perhaps this drive in me is also because if i have to lay around on the weekends to gather strength and re-coup i will also know this sickness has got the better of me. i never had to re-charge my batteries for two days before and i guess i just can't bear the thought i need to now. one thing i do know is that after all the to-do's this weekend i will be worn to the bone tomorrow morning and will need several hours of npr and coffee to really start the process of getting myself physically put together and out of my pj's for monday rush-rush.

i can feel the weight of doing too much sinking in right now as i type and my right eye can't stop closing. but tomorrow morning i will be so glad for everything i marked off the list. night night

 so i joined the dystonia yahoo group and thought i'd just pop my post to them on here. today was an awesome day, fueled by donuts for breakfast and donuts for lunch i spent the whole day cleaning the house and moving things around playing the tv on the music channel from 10 till 5 tonight. I got tons done but by the time silas got home from work (yeah even on a sunday we work-ugh) i started to feel weird like my lips were numb. by the time dinner was ready and i had done all i could my head keep bobbing back and forth. what's frustrating is that when you have something hardcore and you take tons of pain meds and such you never know when something else is actually happening. for example- everyone at my work is crazy sick and i couldn't tell you if i had a sinus infection or flu unless it sounded like i did. i guess that's one good thing about being on all the meds- you just don't notice the little things. who knows. i hope the week plays out well nice- here's the post for the yahoo group
Hi!My name is Amy and I have had Dystonia for 3 years, though diagnosed for 1 1/2... It has been a bumpy journey (I am sure you all can relate). I have generalized dystonia. It started in my right foot and then went up my full right side and to my face. I started to go get botox treatments for cervical dystonia and then it stopped working for very long. Now I am going to get a baclofen trial to see if that will work (the baclofen pump) so I don't have to keep taking so many meds. My dystonia has been less and less "twitches" and "shaking" and more painful. Anyone else suffer from extreme pain from their dystonia?
I am scheduled to go see a specialist for seeing if I have PKND or PKD (dyskinesias). Does anyone also have that? How did you get diagnosed? I have been labeled "unusual" in the progression and the movements of my dystonia so I am hopeful they deem it PED (Paroxyysmal exertion-induced dyskinseia) because my "storms" seem to arrive after alot of physical activity or repetitive movements. Please tell me all you can.
I have several websites promoting awareness so I can get the word out check them out!
http://www.youtube.com/ShakeyAmy
http://www.myspace.com/greasergal 
http://shakeyamy.livejournal.com/
www.shakeyamy.org

Thank you to all that help!

I wanted to let everyone know that ShakeyAmy.org is up and running. This is my personal website that I created where I will try and share my day-to-day stories through blog, post videos, pics, etc. I also reserved .net and .com so there will never be confusion as to who's the genuine Shakey Amy! So far it's pretty basic because I'm the one creating it, and it takes a lot more time for me to complete projects. :) It is still pretty decent so far, but it's more or less of a placeholder now until I've fleshed out how I want to do it. 

I have also sey up my vLog at http://www.youtube.com/ShakeyAmy. This is where I'll be saharing my videos of my life with this disorder, doctor visits, my "storms", etc.

Not much news going on right now, just a lot of the same. The past week has been spent waiting for our pain doc (the doc that's installing the baclofen pump) to call us back.