dystonicgirl-blog

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Trial By Fire - A Film Based on CRPS/RSD from Charles Mattocks on Vimeo.

#vimeo

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Botox and Voice

Botulinum toxin is produced by the bacteria “clostridium botulinum”. It’s the same toxin that causes a life-threatening type of food poisoning called botulism. Doctors use it in small doses to treat health problems.

One unit of this poison is lethal for mice and generally 3,500 units are lethal for humans. However in the correct dose this poison has many benefits. This toxin creates a weakness in the muscle into which it is injected and this effect lasts for a variable period of 2 to 9 months.

The question that comes to mind – Why would we want to create muscle weakness?

Well, many reasons really. Lets start with one of the most popular – prevention of wrinkles! Facial muscles where wrinkles are developing  are injected with botulinum so as to cause a localized weakness of that area which then cannot wrinkle and  appears smooth (and at times expressionless!)

When I was doing my Laryngology training in America I was amazed to see hoards of very pretty and wrinkle free 20 something girls line up for a shot of left-over botulinum. On my very naïve inquiry I was told that the injection was being taken to prevent the future possibility of a wrinkle!So anyway, the toxin was “left-over” from being used for a debilitating voice disorder called as “spasmodic dysphonia”. In this uncommon voice disorder the patients vocal muscles contract too much giving rise to a strained voice. The toxin is injected into the straining vocal muscle under EMG control so as to weaken and relax it. Interestingly the voice in this disorder tends to get better while singing, whispering or after a few drinks! One of my patients came to me 2 months after his first injection of botulinum saying he had a problem. Since his voice was sounding good I wondered what it was.Well, as it turns out his friends were aware of the fact that his voice improved with alcohol and now they were ribbing him about being constantly under the influence of alcohol!

Botulinum has helped in the rehabilitation of children and adults suffering from dystonia’s in which large muscle groups become rigid such as cerebral palsy and cervical dystonia. Hemi facial spasms, blepharospasm , migraine, severe underarm sweating and strabismus are other indications for its use.

Side effects can include pain at the injection site, flu-like symptoms, headache,upset stomach,allergic reactions. You should not use Botox if you are pregnant or breast feeding.

Botulinum is expensive, not currently made indigenously, not covered by insurance companies, and so for many the treatment can prove to be prohibitively expensive. Matters do not improve on telling the patient that every 6 months or so a repeat shot is needed.

One way out to reduce costs is pooling of resources by doctors and clubbing together patients who need the toxin. Basically working as a TEAM –Together Everyone Achieves More!

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18 year old Danielle Emig isn’t about to let Dystonia stop her!

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Bladder retention , my story

Urinary retention A lot of use with chronic illness have bladder issues and I hope none of you experience what I have had to go through but here's what I have to say. When I was a kid I would hold it until I couldn't anymore. I had bladder infections from when I was a toddler till I was a teen. No one knew why. I can't say it was from holding it in or not as it happened for years before I was aware of holding it in. I had wet my bed till I was 17, not something you want everyone to know. I was told it was from having a small bladder. As an adult I had my share of bladder issues. They finally labeled it neurogenic bladder mainly due to Parkinson's and Dystonia. I had stress incontinence with it. Well from stress incontinence we went to retention and I will be sharing things the doctor shared with me trying to help. Then I went to both retention and incontinence, needing those dreaded "pull-ups" . Now I amcatheterized. This is not the best thing in my life, in fact it's worse then a lot of things. I have to go to the dr every 2 weeks to get it changed due to having klebsiella . Most people have them changed monthly if they have a foley, there's also a type they sew in. I've heard these are awful and there's more pain involved so I stick with what I have as it works for me. Here's what I had been told about retention 1) sometimes you can lean forward a little and maybe push on your lower abdomen (it sometimes works) 2) drink more water. Sometimes bringing a bottle of water with you can help. Even turning the faucet on will help. 3) eat citrus fruit or drink citrus juice 4) eat watermelon 5) Apple vinegar cider (found in most salad dressings) 6) drink cranberry juice (also can keep urinary infections away but doesn't always ) 7) eat parsley , cilantro, garlic , ginger , cucumbers, or carrots 8) drink coffee or tea but be careful as to much caffeine can cause retention 9) treat constipation as stool can push against the bladder causing it difficult to pass urine 10) do kegal exercise (I'll post instructions in a few) 11) distraction may work (don't think about it and sometimes it will just happen) 12) some doctors think psychiatric care will help (counseling may or may not help as anxiety can affect everything in our body) 13) last but not least... See a doctor (this is my if nothing else works thing) they can do tests to see if there's a medical cause. The can try medications , surgery and catheters . #retention #incontinence #bladder #parkinsons #dystonia #rsd

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ppl who follow my main know i’ve been reading a lot about service dogs lately… remember never to pet someone’s service dog! don’t even ask! service dogs are working very hard when you see them in public and distracting them can put their owners in danger. everyone loves dogs, they very cute, but service dogs are very busy and the best thing you can do is ignore them and let them do their jobs.

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This pretty much sums up my life. Where I live a lot of places aren't accessible even though Ada law is there to make sure they are. I've tried to explain this but small town rural living and contacting Ada wasn't to helpful even when at one time long ago I was discriminated due to health reasons and I was mobile back then.

Can’t go over it. Can’t go around it. Can’t go up it.

Behold - a horribly drawn comic that expresses my thoughts!

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Life with chronic illness/pain

Life with chronic illness isn't easy, in fact it's extremely hard. I've been dealing with it almost 30 years in November. It started with a sports injury that turned myself upside down. RSD , those 3 letters which never were told to us but never treated either. That's the dx per my medical records that altered my life at the age of 13! Those 3 letter have been in multiple doctors records since and again never said. I only found out when going thru medical records 25 years later when filing for disability. I have been thru it all, years of physical therapy, occupational therapy, counseling and even psychiatry. Physical therapy is great as long as you don't get worse. I kept getting discharged for that reason. The last discharge was when Medicare got sued for discharging a patient cause they got worse during therapy. My doctors are afraid that that will happen again so they don't send me. I didn't start medication management for any of my health issues till 4 years ago when things got significantly worse. Well they were bad but when mobility and pain got to the point I couldn't handle it I sought out help. I had been going to doctor after doctor and things were either "in my head" or so bad they wanted to "cut me open" and neither were acceptable to me. Surgery wasn't going to cure my chronic pain. I now have 20 doctors and multiple medications I take to deal with various issues. My life is from a bed and when I can get out of the house it's in a powerchair. I don't see things as I use to. I try to have a positive outlook and be there for others in pain or who are dealing with chronic illness. I can't say I love life, I don't from a point of view, but I get by and try not to be a downer to others. Being there for others helps me too, emotionally, I don't do it so they need to do anything in return ... I just want to be there. I didn't have anyone there for me. I don't want anyone to be alone in their journey with illness.

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The little things

This weekend our local fibromyalgia walk , where I had a booth representing us pain foundation I had a bit of shock as my husband was talking to someone , someone he didn't know (he's a bit in the shy side) about how the doctors don't send me to therapy anymore cause they discharge me when I get worse ... Whether it's a flare up or an injury. This put me in shock cause like many of you reading this we often think that our partners (whether married or not) or even friends or adult children don't listen to us. Often that's what we believe but in many cases it's not true. So there I was sitting and talking to someone telling my story when I over hear him ,while he was packing up the information we brought into the boxes so he could load the van, about the therapy part of the story and it made me more at ease. He actually listens to me. He's actually "getting it" and while he doesn't have these illnesses being married for almost 14 years to a chronic illness patient he's been through it, not physically but emotionally and mentally. We have been through so much, together and alone, mentally and physically. We have been through multiple doctors, therapists (pt, ot, psychology and psychiatry) you name it I've been there. It's hard to go thru not just the patient but also the family. I can only imagine being a child of a parent going thru what I have been through. Although I try to hide things ,even now , I know when I would scream out in pain my daughter heard it. She told me once that she plays her music or the tv at night just so she wouldn't hear it. (Or to lessen what she heard) We have been through a lot as a family and it's not easy and it never will be but to know that your spouse or family member understands or listens to what you say enough to tell a stranger what has happened is heart warming , made me feel at ease. I love my family for listening and being there. I know they get sick of hearing about my pain, they would rather be doing anything else especially my daughter, but I'm greatful , even when I'm complaining or mad at them, greatful they have stuck around to help me get thru the bad times as well as the good times. Just thought I would share something I experienced this weekend that made me feel good and that my life, which revolves around my illnesses, still can find some joy when something as little as this can mean a lot

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Klebsiella

I had no idea what klebsiella was until 2 years ago , when I had a feeding tube put in and I contracted it during surgery. The day after , for the first time in my life I had symptoms of a bladder infection. I had chronic iti's as a child , we are talking months on end of infections. Never once did I have any symptoms. So when this started I called my doctor. They ordered a test and it came back klebsiella. I have never fully gotten rid of it. At first they gave me a few months of oral antibiotics but it never went away. They ordered a pic line and a week of iv antibiotics , that didn't do it either but since they put a Foley catheter in after I originally got the infection they refused to treat it saying "you will always have an infection" and "we don't test or treat anyone with a catheter" . This didn't sit well with me seeing the are urologists and a conglomerate at that. There are no other urologists in my area. All of them are part of that group. I have shown signs of an infecting for weeks now and when changing my catheter they have seen some of them and noted it in their file but done nothing , now they will have to. Here's some of the signs you have an urinary infection Pain in bladder , abdomen, pelvis and groin. These can happen during urination or intercourse. Foul smelling fine and frequent urination, bladder spasms (or worsening ones if you already have them) , dark or cloudy urine, constant urge to go, and blood in urine. New or worsening fatigue. Fevers are always a sign of an infection. Cramping and vaginal swelling. Of course with any infection you can have chills as well. If you have signs of any infection, especilly this.. Contact your doctor. I've been dealing with this for 2 years and it's not fun. Make sure you get urine tested and blood drawn. My doctors aren't always compliant but I keep on them to make sure it doesn't get worse. http://www.everydayhealth.com/klebsiella-pneumoniae/guide/

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#chronicillness

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#crps #rsd

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Support RSD awareness

#rsd #chronicillness

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long time

I haven't been on here for some time.  I've been dealing with a lot of different illnesses and am somewhat stable right now.  Battling RSD and Dystonia as well as kidney & liver disease, rhumetiod arthritis, Parkinson's , reoccurring dequairvens tendonitis , epilepsy and so many others.  I now have a feeding tube and catheter so going places is extremely difficult as I'm bedridden and use a powerchair to get out of the house so medical transport is the only time I get out other then 2 fundraiser events a year.  I'll be more active here now that I have found a way back on here. 

#chronicillness #rsd #dystonia #kidneydisease #liverdisease #rhumetoidarthritis #parkinsons #dequairvens #epilepsy #feedingtube

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I'm an ambassador for us pain foundation, I help people with their chronic pain questions or issues, write letters to government officials on behalf of the chronic pain community and on issues which would affect us.  I'm an advocate for the chronic pain community with special interest in RSD and Dystonia as well as other illnesses/diseases but those are my strong points. We are an organization of chronic pain patients helping other chronic pain patients

For more information www.uspainfoundaiton.org

#uspain #chronicillness #rsd #dystonia #advocate

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For Dystonia awareness