Of Storms and Peace

Navigating this road called life

More Bad News

I am working hard to maintain a “can do” attitude all while I’m tempted to throw a pity party instead. I may indulge in feeling sorry for myself for a little but, but can’t let myself wallow in self pity, it won’t do any good. I need a doable plan of action, and thankfully the scheming planning part of my brain is happy to override the emotional “woe is me” part!

I’ve had a number of blood tests drawn recently, some part of just the normal work up for a physical…. Due to a number of blunders, what could have all been taken in one blood draw, ended up being me having to go in three different times in 8 days for fasting blood work (which meant messing me up for days because of having to delay my meds each time)… All that laid aside though, I ended up with a double whammy of two things showing up positive, or higher than they should be.

Oh, it’s probably nothing a better diet, exercise, and losing weight won’t cure… The nurse laughed and said “if it tastes good don’t eat it” … Yeah, that about sums it up!

The deal is, it’s hard to cook and hard to exercise. And I’m not just making excuses, I mean those are two of the hardest things for me to manage physically. We have been subsisting on easy things, like a lot of pre-prepared foods because cooking can be so difficult and so painful. Between my really bad joints and the fact that movement can make my spasms worse, exercise is next to impossible. At this point in my life, I physically can not go out and go for a walk. That is totally out of the question.

So what do I do about it? I am taking this as a creativity challenge… I certainly wouldn’t mind losing some weight, and so desperately want to avoid having to add more medications to the mix I already take every day. I’ve already determined dance more with the kids, even if it kills me, the music and fun make it a little more bearable. I’m working on thinking through other ways I can get my body moving without making everything else worse. The diet is going to take a lot of planning and am going to have to get more help to implement it. And then, I need to fortify my resolve and bolster up my self control.

I will do this. I will be happier for it. It’s a wake up call, for things I already knew but didn’t put as a high enough priority. This will be good for me. I can do this.

Adjusting

I guess I’ve gotten over my writer’s block slump and am back at blogging again… I need it, it’s my therapy… Praying gives me strength, Family gives me good talk therapy and physical love, friends and support groups keep me going, and blogging gives me an added outlet to let it out and work through things… I managed to work through things quite fine when I had to cancel my talk therapy with the professional due to an insurance mess up… I already knew I had a good thing going, but it was good to see that it’s true, I can manage well if continue with what I know works well for me… At least, to get me back on track emotionally, and work through stressful situations.

Physically it’s still pretty bad, it’s just been plain rough and we have been trying to adjust to my increasing disability and finding myself in bed more often. The kids are starting to get used to it… When I’m stuck in bed over meal times they take delight in bringing me everything I need, utensils and drink and napkins and plate of food, and check on me to see if I need seconds. I’m getting lots and lots of hugs and snuggles, and we all are excited when I’m able to be upright and do more normal “mom” things around the house… It’s kind of funny, I cheer the youngest two on for their potty training achievements and they all cheer me on for making it out to the couch! I love those little dears!

Monday morning I was in bad shape all around, but my jaw and hands were affected the most… My hands were in fists and my jaw was spasmed shut, locked tight. Could barely get out enough syllables for people to know what I was trying to convey, couldn’t take my meds, and couldn’t eat… My jaw was that way for 3-4 hours, and I admit I was beginning to wonder just how long I should allow myself to be locked up and unable even try to help it with the few meds I have. In the meantime I managed to get my sister’s attention and the dear that she is knew without me having to struggle to make a sound that I needed to go to the bathroom and skillfully got me there… That day I wrote on FB that I have an awesome sister? Yup, that was the day she hauled me to the bathroom as if it was effortless, giving my uncooperative body the support it needed and slowly carefully guiding me to where I needed to go… Yes, she is awesome! She makes a wonderful nurse, a fantastic nanny, and an amazing teacher to my children. They have a pretty good education due to her dedicated and consistent tutelage. We are so spoiled and so blessed!

My jaw finally released on it’s own and I quickly downed meds and some food before it had a chance to change it’s mind… It was a rough day, and my speech came and went, but we managed. Help came in shifts, I didn’t have to worry about the children as I fell asleep and became almost oblivious to the pain for a while.

Tuesday was recovery day, still not so great, but not near as bad. I had to go take a fasting blood test (a repeat because they messed up the first one) was the first time I used the wheelchair in that office, but it went ok.

Today was the day Mom wanted to take me to the store where they usually buy most our groceries, so I could see some of the new items they have and also get some ideas for easier quick meals for my husband to make for us on the weekends or whenever I or someone else was unable to make something… It was good to get out of the house, had been tired of dealing with two potty trainees and the fuss that all entails when it is supposedly nap time… Even with the wheelchair the trip around the small store was almost too much physically, but I wasn’t ready to go home yet so we got some ice cream and sat in the car relaxed and visiting for a while. Yes. Exactly what I needed!

Tomorrow my kind mother in law will take me to therapy… I’m looking forward to the opportunity to chat with her on the ride there and back and get caught up on things… Once I’m in therapy though, I’m not sure what I’ll talk about? Oh, who am I kidding, I’ll find something to talk about, I usually do. It’s been a while, and it’s always nice to get to see her… It seems though that the space between visits is naturally growing farther apart and that’s a good thing, even though she is a dear to talk to (and having a professional validate feelings is always nice!)… I still haven’t gotten any word on getting an appointment with the psychiatrist, so it seems the therapist and I don’t have much to work on other than chatting about how my week (or weeks) went…. Oh well, maybe she finally heard word from the neurologist for suggestions on how therapy is supposed to go.

Who knows… But it’s way past time for me to head to bed so I’d better wrap up this post… Sleep sounds pretty good since I missed much of any naptime today!

Tonight, I’m happy, I’m grateful, I’m hopeful… sometimes it’s hard emotionally, but, I’m adjusting.

Invisible Illness MCS

I finally got over my writer’s block for this piece I was trying to write for and invisible illness project. I don’t know if it will suit their needs, so thought I would post it here as well.

As soon as the door of the Doctor’s office opened I was hit by a wall of smells making all my symptoms instantly worse. I gritted my teeth and went on in and waited uncomfortably for my name to be called. The minutes seemed to drag on forever. I just wanted to hurry up and be done so I could escape back outside into the fresh air.

You see, I have an invisible illness. It’s called MCS (multiple chemical sensitivity) it’s often misunderstood and under recognized. It causes fatigue, pain, migraines, and breathing problems to name a few… For me, it is also a trigger to make my twitches and spasms of my movement disorder worse, many of my symptoms are totally invisible to those around me, while some can be quite dramatically visible, like me walking into a building with only the aid of a cane and then having to be wheeled out in a wheelchair.

When I first discovered I had MCS I was suffering with a constant migraine that was only slightly dulled by round the clock regiment of over the counter meds. I spent many many hours shut up in a dark room trying to will the pain to go away… I had many other symptoms too, but it was the migraines that were so crippling. Once we understood that there were so many things we used daily that was making me sick we went through and threw out anything that had the word fragrance on it, and found alternatives for everything from personal care products to laundry detergents and household cleaning products. It was a huge learning curve for sure, and I worked hard with taking supplements and going on hikes in the woods for fresh air and being careful how much I allowed myself to be exposed to. My migraines went away, only to crop up every once in a while instead of being all the time, and my other symptoms improved too.

I never cured myself, but there were times I could handle more exposures than at other times. I lived a fairly normal life. Most people had no clue. If you saw me on the street you wouldn’t know that passing by me with your cloud of perfume and personal care products would cause me to hold my breath in hopes to not get too much exposure. And when I was more vulnerable, you wouldn’t see me at all, because I’d stay home where it was safer.

The past few years, as my movement disorder has progressed, things like hiking have been long out of the question. I’ve watched my resistance dwindle and the question of whether I can handle the “smells” of anything is always foremost in my mind. Just having someone come into my home with the normal fare of scented laundry detergents and body care products on can be way too much. I am sick enough now with my movement disorder I need a lot of help, but I often go without asking help from people beyond family members (who already know and understand my MCS) because I know it would be too much to ask someone to regularly go unscented just for coming to help me.

I precalculate everything before going anywhere away from home whether I’m up to that level of exposure and for how long… I have been known to eat carry out in the car instead of going into a restaurant because I know I can’t handle that level of exposure that day. I know I can handle a department store better than a party or Church because there is more square foot of building per person. Parties and special events mean use of even more fragranced care products as every one wants to look and feel their very best. I have missed out on many parties and weddings and funerals because of this.

All this, and I’ve not even touched on the chemicals used in other things, like furniture and carpets… I love to have my windows open to try to get fresh air in the house, but even then I have to be careful not to do it when the neighbors are spraying their lawns or doing their laundry…

It’s isolating being allergic to people, and allergic to their homes. It’s hard to say, “no, I’m not up to doing that today” or “oh I wish I could be there, but I can’t” It can be a lonely life. Certainly keeps the circle of friends I can “hang out” with exceptionally small, particularly when I’m at my most vulnerable to be affected by fragrances and chemicals.

The truth is though, I’m not the only one with a sensitivity to fragrances, there are those who can’t handle certain perfumes, and then there are those who are even more sensitive than I am. I just wish it could be more understood and easier to deal with. It is becoming more and more understood how unhealthy and how harmful secondhand smoke can be, maybe one day more places will recognize how deterimental fragrances and chemicals can be… Until then however I continue to miss out on events, and dream of having enough money to eventually to move into a safer more chemical free house nestled in the woods that can filter out the air pollution from normal American living.

Pause or Last Post?

Well, this month officially marks a whole year since I’ve started blogging. Actually I missed the anniversary date, it was on the 10th. I’m kind of in a writer’s slump right now, I have a whole lot of unfinished drafts. I don’t know why. Maybe I’m trying too hard to get them perfect, maybe trying to make them usable for other people is just too much pressure. Maybe I just need to go back to just writing my feelings as they come… And yet, that’s the thing, I think I’ve said every thing a million times already… Yes, my disorders are a pain to live with, yes, I have strong opinions about the whole “stress diagnosis” thing… And who wants to hear the same boring things over and over and over again? Or maybe, my brain is just too muddled with Rx and the progression of my disorders… I know my concentration isn’t what it used to be…. Probably it’s a mixture of all of the above… Why not, there doesn’t need to be just one reason.

So, today I ramble, and well, this is the first time a blog post has flown off my fingers at a comfortable pace without having to stop and think and restart, and correct and change choice of words or switch paragraphs around. Feels good actually.

And there it is. The block again. Starting and stopping changing my mind an deleting…. There are just too many things to write about, everything is coming out way too disjointed. Oh well!

I miss going to Church, I wish my sensitivity level to fragrances weren’t so high right now. It’s not that I’m afraid of being seen ticcing or spasming… I’ve learned to get over that a long time ago and I know everyone understands and is kind about it… If it were just that I’d have gone this morning, and so many other mornings. But the last several times I’ve attempted to go I’ve had to leave early because it made me REALLY sick… Just having someone with scented detergents on their clothes come to my home for a few minutes or hours can make my symptoms worse…. Church is that multiplied, and makes my symptoms so so much worse… The last few attempts made my body start to go into full blown storm… It is awful and something I don’t wish on anyone! And here I go again repeating myself. How many times have I mentioned wishing I could go to church and trying to explain why I can’t? I feel bad about it. I want to go. I still keep hoping somehow I’m going to get better and stronger and be able to work up to going at least every once in a while!

Oh well, so sorry, I probably should wrap up this ramble and let you get back to what ever you were doing, if you’ve read this far…. Who knows when the next blog post will come, who knows what is in store for the future of this blog… Am I just burnt out and need some time, or is the whole blog writing thing coming to an end? Maybe it’s time to do something different? I am thankful for the outlet this blog created, I worked through so many things on it’s pages.

Farewell for now, be it for a day or a week, or a month, or for forever.

Spiritual Connections

When I was a kid, I got to know and become friends with a number of mentally handicapped people who came to our Church. We loved them and enjoyed their refreshing view on life. My dad would take me with him when he went to their group homes to visit them, it was a good experience for me, and one I will be forever grateful for.

One such home was hosted by a mother who’s son wasn’t only mentally handicapped and confined to a wheelchair, but he also had a habit of making weird loud noises and would hit and bite himself. This was something I wasn’t used to, and his manic sounding laugh sent chills up my spine. It brought to mind the stories I had heard of missionaries triumphantly casting out demons and giving people their lives back. In my very ignorant, but purely innocent young mind I thought it was possible this was demonic and how wonderful it would be if he could be helped by just casting the devil out… Oh wouldn’t his mother be so happy and relieved?

I’m so glad I never voiced such ideas around her. It would have only served to hurt her and show just how uneducated I was about such things…. I didn’t have a clue that years later that person would be me.

That’s right. Now I’m the person you may see in the store or restaurant making wild gestures and odd sounds. And no, I haven’t made some sinister pact with the devil, or let him slip in and overtake my mind in a more subtle way. I simply have a couple of different movement disorders, one of which happens to be a genetic tic disorder. It’s in my genes. I have other family members who have it, and while their symptoms aren’t as severe as mine, it is obvious it is inherited, not gained by some spiritual slip up. I take medication for it, and it really reduces my symptoms and keeps things better under control. I really doubt the devil says “oh no, she’s taking that pill again, I’d better run! I can’t torment her today!”

When I first started having involuntary movement symptoms and realized this was more than temporary I prayed for healing, and I had enough faith to honestly believe I could and would be healed. I prayed, I fasted, I was anointed, I confessed my sins, and even things that really weren’t sins, but just in case I confessed them too… The fasting did help a digestive issue I was struggling with, but I wasn’t healed of anything else. Instead I began to realize that this was something I was going to have to live with and accept as my “thorn in my flesh.”

Over time I learned that the answer to “why me?” was simply “why not me?” what made me so special that I should be exempt from bad things happening? I eventually learned to quit tormenting myself with trying to figure out why bad things happened. We live in an imperfect world, we live in imperfect bodies, bad things can happen and there doesn’t always have to be a reason or a lesson to be learned.

There doesn’t always have to be an emotional or spiritual connection either. I will never forget the time as a kid I had an infected toe that wouldn’t heal no matter what salve or soak was used. Back then studies about the effects bitterness had on our bodies were vogue in circles we were in. It was suggested perhaps my toe wasn’t healing because I harbored bitterness in my heart. I was just a kid, I didn’t have enough reason or had lived long enough to let bitterness fester to toxic levels, but I dutifully searched my heart to be sure. Ends up, the reason that toe wasn’t healing was the simple fact that I had an ingrown toe nail. Once that was removed it healed right up. It was that simple.

So this brings me back to involuntary movements caused by misfiring of the brain or any other disorder caused by the brain really. It is just that, a physical symptom of a physical disorder created by a physical organ of the body not working right. It doesn’t have to mean there is a spiritual connection. I don’t know why down through the ages this sort of thing has been assumed demonic possession, yes, it causes visible symptoms that we are often uncomfortable with, but it really is no different than a heart malfunctioning or any other organ of the body that has failed to work properly and needs help.

I don’t know how that family is doing anymore, I don’t even remember their names. So many years have passed and I have moved multiple times since then.She probably would have a lot of wisdom from experience to share with me if I could just chat with her now. I hope she knows what a blessing she has been to the many she opened her home up to. She turned her own difficulties into something good to help others and that is an example I want to follow.

Moving On

I hardly know where to begin. As most of you know I kept busy with the dystonia awareness efforts during the month of September which really was good. It really made me feel like I was doing something to help, and that felt good. I also met new friends and got to know others better because of it, and that was wonderful!

Life certainly didn’t just put itself on hold so I could solely focus on those projects however. There was the start of school for the kids and adjusting to a new schedule. There was my husband having to make a job change and spending a week at home between ending the old and starting the new. There were a string of doctors appointments for various family members. There were projects around the house, and just the normal chores that must be kept up, which as usual some got done and some had to let slide. And then, my 2 1/2 yr old decided he wanted to be potty trained, and why not try again a little harder to get our 4 yr old late bloomer to potty train as well?

And then, there was my dystonia. Not only deciding to flair up repeatedly, but to actually start progressing and becoming worse again. Just last week alone I was in bed more than not, and that is not my usual at all. My children really struggled with me being in bed so much, telling me how they wished I would get better. Of course that broke my heart. I know I mentioned that in my last post, but when I realized that this is more than just a rough patch, that certain things will just be worse it was extra hard to take. The dystonia is fighting harder to take over, and I began to really struggle emotionally.

The other day I sat there looking at my twisted legs sprawled out before me and just bawled my eyes out like a baby. I was feeling so helpless… As it sank in that my “good days” are going to be less good than they were before, I realized that as far as I’ve come fighting to get the help I need, I still am so very alone with so very little help (medically speaking)… It seems no one can or wants to really truly help me. Or so it feels that way. I’m still stuck in the middle between various practitioners with a multitude of conflicting theories all while my body continues to degenerate. I don’t know what to do next, I am sick of retelling my story over and over again, I hate going to new doctors. I hear promises of help, and then discover the solution falls short of even beginning to make a difference… I feel like I can’t trust anyone anymore… It’s been a lot of thoughts and feelings swirling in my head.

I found myself crying more and more lately. Largely due to everything surrounding my disabling condition and lack of medical help, but of course anything else that cropped up was too much to bear too. I don’t talk about it much, but our children have their own issues, neurologically, psychologically, physically, developmentally, and etc… Over all they are just your “normal” kids and we do our best to keep it that way not making a big fuss about it. Sometimes though, the kids notice or ask why they struggle with a certain thing and it is hard to see that… Occasionally my husband and I have chats about this child’s needs or the other’s and it can be overwhelming, as well as sad that that particular child has to struggle with whatever it is we are talking about. But that’s what parents do, worry about their children and try to make life better for them.

So yes. Life has been good, and life has been very bad lately. I’ve really struggled under the strain of it all, and ended up getting labeled with “Adjustment disorder” (well, that was used as a billing code at least) all because I lost my composure in my PCP’s office and cried about the dystonia and doctors situation. I fit the criteria for it for sure, but I was taken by surprise, and honestly offended that it is called a disorder. Someone who struggles with doctors blaming her symptoms on “stress” doesn’t need this added to the list… It’s just a normal human response to when bad things happen.

I’m finally ready to move on now though. When the Neurologist first promised me the moon and back at the end of August I thought maybe it was time to plan for the day I was better and could do things again… I felt it probably would be a waste of money to make my house more handicapped accessible or dumb to save for a new wheelchair. But now I realize that they have no magic solution that is going to see me much better anytime soon and I need to come to terms with what life is now. Instead of getting better, I’m worse, and I’m going to have to accept that and figure out what our new normal is. I need to start measuring for more grab bars, and figure out new ways of making meal preparation easier (we can’t afford take out food as much as we have had the past two weeks!). I need to figure out ways to help the children adjust and accept our life as we have it now. I don’t want them to feel it is all doom and gloom. I want them to be happy, and have started with making sure I get in a lot of extra hugs and snuggles.

We are going to get through this crisis. We always do. We will find a new normal. We always do. We are going to be okay. It may be difficult but we will figure it out. It’s time to move on.

Over did it, again.

I am so happy!! I may be moving very slowly, be still weak and tired, and still spasming a lot like after shocks following an earthquake, but I’m UP on my own two feet, am able to take over being Mom again, in fact, just maybe the kids will be ready for school in time!

I over did it. I plain did too much and paid big time for it. I was due for my symptoms to get worse as the cycles go, but it probably didn’t have to be this bad. I had projects around the house I was trying to finish, and I had shopping that needed to be done. Pushing myself in a wheelchair is no picnic, my arms got so tired and sore, my chronic wrist problems protested, and the skin on my hands rubbed red and almost raw in a few places…. But, I am like that. I never seem to remember to pace myself when I get on a mission to accomplish something.

I was stuck in bed for two days, the majority of the time not even able to go get myself to the bathroom next door without someone’s help. I was not able to even think about trying to fix meals, and had to let someone else take care of the children. I was frustrated when I wasn’t recovering as quickly as I usually do, and wondered how much was to blame for over doing it and how much is part of the progression of my disorder getting worse.

Family members and friends pitched in to help, I was so blessed by everyone’s love and care. The children were well taken care of, everyone tried to keep their routine and activities as close to normal as possible. The the little dears were extra sweet giving lots of love and kisses and special pictures drawn just for me… And then, they started to share with me just how hard this was on them. They were really struggling with mommy being stuck in bed. Being on the couch is one thing, but being in bed all day for several days is quite another! My heart broke for them a little more each time they looked at me with those big sad eyes.

I’m improving little by little… Just maybe I’ll be able to spend a good part of the day on the couch today! Whatever the case may be, I’m determined to be a little more careful about pacing myself especially for the next little while. It won’t keep this from happening again as this is becoming more and more of a regular occurrence , but just hopefully it will keep it from being quite so severe and last so long.

#DystoniaAwareness Twitter Flash Mob?

An amazing accomplishment by a band of novices.

I joined twitter a few months ago for the sole purpose of doing my part to help spread awareness about dystonia. I’d never ever tried twitter before. I was content and happy with facebook, it was something I was familiar with. Twitter? What are all these # and @, and shortened links, and just a few other words thrown in? And what about staying under 140 characters? It all seemed so foreign, well, it is almost like another language. I don’t know, maybe I’m just too old for this stuff? But, I did it. I wanted to do my best to help. I wanted to be ready and prepared to add my voice to the projects others had underway. Never in my wildest dreams did I guess that I would end up joining in twitter chats and eventually a twitter “flash mob” posting as many tweets as I could in one hour’s time all with #dystoniaawareness in them… But hey, I’m getting ahead of myself here. I need to explain how this all came about.

Any of you who have been reading my blog lately know that I’ve joined in to do my part to help spread dystonia awareness and promote the petition to the White House requesting to officially recognize September as Dystonia Awareness month here in America. We need awareness to help in many ways. Dystonia needs to be better known and easier to recognize for faster diagnosis, better treatment, and hopefully eventually finding a cure. We need 100,000 signatures, and we are no where near that goal. As the days pass it has been very discouraging at times to watch the numbers climb way too slowly. At the same time, I have been inspired and encouraged how this one goal has brought so many people together to work on awareness projects, often being drawn out of our comfort zones all with the petition as our motivator. It has been incredible. We won’t give up. In the end, if we haven’t reached our goal, we still will have accomplished a great thing by spreading more awareness. And that brings me back to the flash mob on twitter.

Angela (who’s story happens to be first in my series this month) has been working tirelessly like many other people doing what she can to help spread awareness and promote the petition. She has been a huge inspiration to me, and has encouraged me on days I felt like just giving up to keep going with our awareness efforts. Monday she came up with the idea of doing a “flash mob” on twitter and organized the whole thing in a few hours… It was a success, and we thought, why not stop there? Let’s keep going, and as she put it, let’s invite more friends to join to make an even bigger impact? So, we did it again on Tuesday evening, with even more success, and plan to do it again tonight… The first night we managed to get on the list of trending hashtags under the diseases category… First it showed up as number 13, then we watched it climb to number 10… By the end of Tuesday’s efforts it had climbed to number 3!!! We were all so very excited! In Angela’s own words here is a better explanation of our goal and success…

“There seems to be some misunderstanding about what we are doing on twitter. I registered #dystoniaawareness the first week of September on symplur.com, the top site for Healthcare related to twitter. This means their site is where all of the doctors, hospitals, nurses etc who are on twitter are going for their information. There are 1000’s of them on twitter who I have been making connections with very quickly. Most all seem to use the symplur website as a main resource. So what it means to have #DystoniaAwareness reach no.3 on the trending list, is that all of them will see us on the list. If you click on #dystoniaawareness from the trending list (where all these ppl are seeing it now) it pulls up any tweets that included #dystoniaawareness *WorldWide*. We have been on that list for two days now and are right by the top. The twitter flash mob is a very organized event that has a list of prewritten tweets for us to copy and paste, not only for speed, but because they each have links to personal stories, pictures, and at least half have the petition link included. Regardless of the petition outcome, we have put dystonia awareness, the true story, in front of all of these medical professionals basically in neon flashing lights now. On top of that, we are tagging news reporters, celebrities etc and are using methodical planning to contact them by friendly force (some have gotten 100’s) which has pulled in support from [list of celebrity names] just to name a few. We also have gotten several news stories developed throughout the month because of all the effort being made on twitter before I set up the flash mob. One is [a reporter] who has helped [a gentleman with dystonia] in the past, and others who members of the dystonia community have suggested to add to our list of “support targets”. Raising awareness. Main goal for September was to make it Dystonia Awareness Month. With a week left still, that is absolutely a win. Considering the fact that we were never on the list before, the Flash Mob was organized the first time in less than 10 hours, and it only took 2 days to reach where we are now, there is no way to predict the outcome. We are not done yet. September IS Dystonia Awareness Month, and that’s because of a huge group effort made by individuals who were also worried we would fail, but decided if we do, it was better to fail trying.”

This whole effort has been made by a growing group of people who want to do everything they can to help spread more awareness and promote the petition, many of us being pretty new to all things twitter. We inspire each other to keep going, and are encouraged by a few who are skilled with this sort of thing with tips and suggestions, we could have never done this without their help! With a special thanks to Drew, an RN who has been working tirelessly helping us navigate promoting dystonia awareness on social media. Together we hope to make a real difference. September isn’t over yet, and we are not giving up!

If you want to join in tonight’s flash mob, here is a link to the even page.

https://www.facebook.com/events/706438816107841/?ref_dashboard_filter=upcoming

And of course, if you haven’t signed the petition yet, here is the link to that.

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

And last but not least, a link to Nurse Andrew’s website (thank you so much for all you have done to help us out!!)

http://www.nursefriendly.com

To Anyone who works in Emergency Medicine…

Whether you are an EMT, a Doctor, or Nurse, or anyone else who tirelessly works to help in emergency medical situations, I don’t know how you do it. I have friends and family who work in some of the same capacities as you, and I hear their stories. I don’t know how it’s humanly possible to still be smiling and gentle and kind by the end of your shift. THANK YOU for all you do for us. I really respect how hard you work and understand you put up with an awful lot. You see every type of true emergency and then have your time wasted with non emergencies… You deal with everything imaginable, and then, someone like me comes in. I have a movement disorder.

A few years ago I suddenly started having severe symptoms. I had lived with my disorder for years, but never in my life did it take over my entire body or become so violent. I was scared for my unborn child, not knowing what my body flipping around and contorting was doing to my baby, or if the contractions it triggered would cause me to go into premature labor. I felt betrayed and trapped by my body. It was doing things I certainly didn’t want it to do, and it wasn’t letting me do what I wanted to do. I couldn’t even open my eyes or speak during these events. My dystonic spasms were more severe than I’d ever knew was possible, the pain completely off the charts. The twisting of my torso made it hard to catch my breath. It was absolutely terrifying for my family to watch, and they called for help, on on more than one occasion.

I had polar opposite experiences with how I was treated. Each time my symptoms were the same, my family told all the same information. What medications I was taking, and how I could still hear and feel but couldn’t speak or open my eyes.

One of my early experiences was with an EMT who was convinced I was faking. I was handled roughly, the straps on the stretcher pulled so tight they hurt. Once I was taken far enough away from my family’s watchful eyes and ears he started yelling in my face asking me why I didn’t open my eyes and why I “refused” to speak to him. All I wanted to do was get help, and this man was making me wish I could escape and run away…

The next time I was scared to go, but the first responders begged me to. This time the EMT who was in charge of my care was the kindest most compassionate person I could have ever hoped to have. He loosened some of the straps to give my body the room it needed to spasm and twist around. When my breathing started to get rapid due to fear and pain he would speak quietly and calmly to me reassuring me help was here and I was going to get through this. He treated me with dignity and like a normal human being who was needing help….

I will never forget either experience. I will forever be grateful to the kind EMT and all he did for me. But it is the bad experience that has always been in the forefront of my mind whenever I yet again begin having severe symptoms… Even when my pain is at an unimaginable all time high, or my breathing is so severely compromised that it is scaring everyone around me, I still refuse to go to the hospital. I’m not sure I would get help anyway… In my past experiences I wasn’t given anything to help, nothing to calm my muscle spasms, nothing for the pain, not even a sip of water. If I wasn’t just left to lay there suffering alone for hours, then I was carefully being observed for faking, or tested for drug abuse, or having a psychiatrists doing their best to get me to confess that I was abused or at least totally overwhelmed with life. I’m afraid to ask for emergency help. And I’ve since discovered I’m not the only one.

There are enough heart wrenching stories to fill a book of people with all different kinds of movement disorders who’s regular meds aren’t keeping severe symptoms at bay who go to the emergency room desperately hoping for help and then have very bad experiences. Being left to suffer alone, restrained, handled roughly, ignored, yelled at, being sent to the psyche ward and more are common themes. All we want is help. Relief from the unrelenting torture that a movement disorder can inflict on our bodies. I wish there was standard protocol in place, like there is for epileptic seizures, to make it easier on you to help us. But I do understand that there are innumerable variables when it comes to symptoms and situations surrounding those of us with movement disorders which makes it so much more difficult.

There are a lot of things we have in common though. We long to be treated with kindness. We hope to be spoken directly to, and like an intelligent human being. Just like with seizures, we need to be kept comfortable in as safe a place as possible so we don’t hurt ourselves. Restraints at the very least make it all the more painful for us, and often, it only serves to make our spasms and tics worse. Involuntary movement is just that, involuntary. Not only can we not stop it, we are frustrated our body is out of our control. Dystonic spasms tend to get worse if they are resisted, if someone tries to force our body in a different position the pain can be unbearable.

If our condition is beyond what you are able to help with, we would so much rather hear a compassionate “I don’t know how to make it better I wish I could” than “Get over it, you are capable of going home if you wanted to”. We are frustrated and embarrassed enough with what our body is doing, it makes it all the more humiliating to realize that we are thought to be faking, or somehow doing it to ourselves for some reason.

I assume if you have read this far you are someone who cares. So very many of you who work in emergency medicine are angels dressed in scrubs. I’m so very glad you put up with what you do for the opportunity to help people in need. More often than not, if you are seeing someone with a movement disorder you are likely seeing us at our most vulnerable, painful, exhausting, frustrating, and desperate moments. Every kind word you speak and every gentle touch goes a long long way, and I thank you for that from the bottom of my heart!

Health Obsession?

With my debilitating disorder continuing to get progressively worse, there is always cause for concern. It is worrisome, there is no way around it. It changes one’s perspective when you are being robbed of being able to do things a little bit more each time it gets worse. I end up trying my hardest to enjoy what I can do “now” to the fullest, milk it for all it’s worth. Like going on vacation, I don’t know, but it might have been my last chance to go up there and so I treated it as if it were, soaking in the sights and smells and taking plenty of pictures in hopes it will stick with my memory for a long time…

These days, my dystonia never lets me have a break or forget it’s there.
I can’t just let go and live, and just lay my health issues aside, it’s ever present with each move I try to make to do anything. I have to carefully consider how each thing I hope to do will affect me, and weigh whether I’m going to be able to complete the task or if it’s worth the risk of big pay back later.

I get very frustrated when I am told “there’s nothing much we can do” by doctors, because, if they didn’t think it was “stress” they would have a whole list of prescription drugs for me to at least try, and maybe just maybe it would make life a little easier, maybe it would help slow the progression a little???

I’m not ready to give up hope that there is more we can do than just “manage stress” better. After all my careful research and digging into family history I finally at least got someone to believe my tic disorder was a separate issue from the dystonia and is genetic and not just caused by “stress”. I finally was given medication for it, and what a difference it made!!!  Yes, sometimes meds are good!

Don’t think I haven’t thought of or tried natural remedies… actually, for about 16 years that was my goal. I didn’t think it was worth the risk of side effects to take meds… I had too much of a personal and family history of reacting to meds even in strange ways. In fact I thought maybe it was a med that triggered the whole thing in the first place. A drug reaction certainly was the culprit for making me much much worse years later so I had good reason to be concerned. I leaned to work with and around my dystonia. I used special diets and supplements and specific exercises to try to keep things at bay. These all worked fairly well until they didn’t…my condition has progressed too far, I need more help. I need medications.

I’m not spending time trying to figure out what I have anymore. I know it’s dystonia, everyone agrees these are dystonic spasms… I have had an alternative specialist believe it is straight up dystonia not caused by stress, but I need a medical Dr licenced to prescribe medication to believe stress isn’t the only culprit so I can get the treatment I need. But because mine has been paroxysmal in nature (episodic) it’s easier to assume it’s stress induced. Should I just let it go and accept this is “it”? What if everyone else did that I wrote about in the post “Living Statistics”? They would be without the help they truly needed if they gave up…

And so, I am doing what I can to help out with spreading awareness and promoting the petition to make September Dystonia Awareness month…  at this point this feels like the best thing I can do to eventually get the help I need, better yet, it is helping others, even those who have yet to fall prey to this awful disorder… hopefully future generations of those with dystonia won’t have to go through what we went through to get help. This project gives me purpose and a sense that I can help others, even if I’m stuck in bed, and that inspires me and makes me happy.

Perhaps maybe I do sound obsessed with my health. But this is no small thing. It is ever present and becoming more and more debilitating. I can’t just pretend it will go away, I can’t just wait for it to get better anymore. My dystonia has completely taken over my life and I aim to fight back. To at the very least try to improve the quality of life that I have, for my sake and for the sake of my husband and children.

Please help all of us, if you haven’t signed the petition already please do, and please please share the link or some of these blog posts about dystonia to help spread awareness  and get the need for this petition out there!  Those of you who have signed and shared, thank you from the bottom of my weary heart. Every one who told their stories here thank you, and thousands more are ever so grateful!

Here is the link below:

http://wh.gov/lh5aj

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