Me and all my pills and injections

I created this collage for my final project for one of my courses at Ontario College of Art and Design University.  It measures 7ft high by 5ft wide.  My dress represents the medications I take, the round circles, Clonazepam, the yellow is Levodopa and the aqua diamond shape are sleeping pills.  The tree has blossoms made from syringes of Botox represented in gold.  After taking all, I am in my ballet shoes, dancing through rivers of Botox.  OCADU chose this piece as part of their First Impressions display representing the drawing class for 1st year students along with the artist talents of my instructor.

Me and My Dystonia

This is a blog describing my trials, my journal about living with Dystonia.  I created this painting to help explain to others what exactly I was, am still feeling.  It is so difficult for others to understand what I, and others like me are going through because to them we still look the same.  No one at Yoga or at my Ballet class would ever guess there was anything wrong with me.  Yet, if I go out for dinner or sit for any length of time, I cannot walk away from the table without assistance.  I cannot walk around a mall.  I cannot sit through the theatre or movie.  I cannot fly in excess of 3 hours without assistance.  I cannot sit in a car in excess of an hour without laying down in the backseat.  I cannot get my hair cut unless I wash it at home and they do not comb and blow it dry.  My hair is almost to my waist.  I had to buy a new bicycle that let me sit perfectly upright.  I can no longer work.  I was an accountant from the age of 17 but sitting at a desk or leaning over a computer is no longer possible.  I type this on a laptop actually placed on my lap as I lay down with my feet up.  My life has changed dramatically and I and my family have had to adjust.  I am in pain almost constantly.  Pain is just a part of life now.  I have sudden bursts of energy, but it is costly.  I pay for it in long periods of fatigue where I can do nothing but lay on the couch and watch movies.  I used to be so athletic and so full of energy.  I was invincible or at least I thought so......

Here is my story.

The Beginning

It all started just over 2 years ago now, the major collapse anyway.  I awoke March 7th, 2009, in the middle of the night.  I was feverish, no just hot, really hot.  I got up, walked down the hall, reduced the temperature on the thermostat, started back to the bedroom, felt nauseous and headed for the washroom.  I stood there for a few moments, thought I was okay and started my way back to the bedroom, only just a few feet away.  The world revolved, I saw nothing, but felt the carpet on my face as I hit the floor. There I lay for a while until my strength returned, got up and crawled back into bed.  In the morning I awoke and carried on as usual.  As the week progressed, I found myself experiencing dizzy spells at work, the arches in my feet ached, my calves ached and I just felt odd.  My husband and I had reservations for that upcoming weekend to go skiing in Quebec for a few days.  We were to have a romantic ski week in this beautiful little bed and breakfast in Sutton, a 7.5 hour drive.  I was excited to go, but nervous since I wasn't feeling "myself".  My husband John and I thought it must be just a touch of the flu as all kinds of colds and bugs were going through the office.  By Thursday, I had a definite limp. Friday, still having not missed a day of work went as usual, but I knew there was something wrong and I was really limping, constantly.  Later that evening John packed up the car with our ski equipment and we were set to leave first thing the following morning.  I was exhausted and found it difficult to pack, just throwing anything into the suitcase.  Definitely not the normal me.  I was sick, but we were going anyway.  I awoke the following morning still exhausted and hurting everywhere.  We loaded our suitcase and me into the car and off we drove.  I think our first stop was in Bellville, I needed Tylenol, Advil or something.  I had pain everywhere.  My Achilles tendon on my right ankle, my big toe, my left knee, my right elbow, my hands ached, my neck hurt.  The pain kept rotating from joint to joint.  I thought if this the flu it must be bad.  The next stop, Kingston, we picked up some Voltaren cream, I bathed in it.  At this point as we were driving I had my feet up on the dashboard and my seat as far back as it could go.  I was in agony.  We stopped again later for lunch.  I just kept popping the Advil.  From here to the finish line was total torture, I was counting the minutes, the miles, just persevering the drive, we were too far now to turn around.  Finally we arrived.  I sat in the lobby while John registered us and carried our suitcase upstairs.  I laid on the bed stretched out, still managing to hold back the tears.  The pain, the pain.  John went out for a walk, found the liquor store, bought some wine and lots of coolers for me.  After a drink or two, I dressed and we went downstairs for a most romantic, absolutely delicious dinner with a bottle of wine.  After dinner we tried to go for a walk but I was unable to go very far.  I was dragging my right leg behind me as though it didn't belong to my body.  We went back to our room that had no TV for entertainment so we had a few more drinks so I could swallow the pain and went to bed.  It was an incredible night and not incredible in the way we had planned.  I had both feet under my husbands back trying to keep them straight as they were in a steady cramp.  My Achilles tendon felt like it had been cut.  My big toe was being stabbed.  I was drinking coolers and downing Advil's all night long.  I cried.  I knew this was no flu.  I was in agony but tell me how do you relay the amount of pain you are in to someone else.  What is the scale?  What can you compare it to for someone else to acknowledge.  I looked fine, I had no fever, I hadn't fallen anywhere.  In the morning I cried again as he opened the curtains to bright beautiful sunshine and was going to leave me to go skiing alone.  What was I going to do?  Read all day in bed?  I finally convinced him to take me.  I had a very hot shower trying to alleviate the aches and pains as much as possible.  We finally managed to get me dressed and downstairs for breakfast much later than expected, just as they were finishing serving I think.  Then we drove to Mount Sutton.  It took the two of us to shove my feet into the ski boots, they were still so badly cramped.  At least the boots forced them straight and I found I could actually move better with skis on than trying to walk.  All I had to do was slide each leg forward.  So...I managed to stand in line at the lift and make it to the top of the first run.  I thought it best to try a green run first to see if it was manageable.  Well, it was icy and I found I had absolutely no control over my leg muscles at all.  I was all over the place, just managing to miss trees and anyone below.  I made it down the hill and that was it.  I was done.  Once.  One run.  Finished.  Luckily it was a nice day and I had brought a book to read.  John helped me up the stairs to the ski chalet and there I stayed.  He skied and I sat outside and read.  I couldn't even make it to the bar for a drink.  I sat at a picnic table in the sun and leaned against a wall.  I shifted weight from one hip to the next, took my boots off, put them back on.  I sat there for what seemed like hours, but it was really only until lunch that I saw his head poke through the crowd and rescue me.  John drove me back to the B&B, made sure I had some food, lots of coolers to drink and left for what was the remainder of the afternoon to do a little more skiing.  I lay on the bed reading, popping Advil, eating and drinking coolers waiting for his return.  All I wanted was to go home.  After a beautiful afternoon and as many runs as he could squeeze in a short few hours, John returned to take me out for dinner.  He scouted out a restaurant close by and we walked, if you can call it that, to dinner.  It was again the best food, great wine and wonderful company, but I was hurting badly.  We went back to the room and I proceeded to have another night just the same as the last.  We got up the next morning, he packed up the car and we left.  He had prepaid our B&B and skiing for 4  or 5 days.  We had both booked the week off work, it was only Monday.  This was now March 15th.  Again I faced the torturous drive home and we made it back to Richmond Hill just before 5:00pm, just before the Rheumatologists office closed.  I thought he should just take me directly to Toronto General, but I think he still thought it was just the flu.  Why not, what else gives you aches in your bones, and so suddenly???

The Family Doctor and my Hands

For two years prior to my skiing episode I had been complaining of sore hands.  I had been involved in Tai Kwon Do, had achieved my blue stripe and was going to try out for my blue belt.  My hands began to bother me.  I found I could no longer punch at the targets.  They ached at night and in the mornings.  They ached at work.  Being an accountant and keying either at a computer or a calculator constantly, my hands were essential to my job.  Some days I would tape them up.  Other days they were fine.  I found I could no longer play golf.  I couldn't hold on to the club.  It felt like my middle finger would dislocate when I tried to swing the club.  John loves to golf and I hated to not participate in this part of his life.  I gave up Tai Kwon Do and concentrated on aerobic classes at our local fitness centre near the office.  This I did at lunch time a couple of times a week.  I went to our family doctor to find out what was wrong with my hands.  He didn't know.  He did some blood tests, everything was fine.  They began to keep me awake at nights, they throbbed with pain.  I did some research on the Internet and came to the conclusion it must be arthritis.  I bought some infra ray gloves that I wore to bed at night hoping for some relief.  I rubbed arthritic cream on them, nothing helped.  I bought a therma bath to dip my hands in wax.  I found that gave me instant relief only while the wax remained hot, about 20 minutes if I wrapped them in plastic and put them in oven mitts.  I finally went back to the family doctor and asked him to make an appointment for me to see a Rheumatologist.  My family doctor did so against his better judgement, after all, nothing was wrong with me.  It hurt to turn a key, I melted if someone shook my hand, cried if I accidentally banged or dropped anything on my hands.  I had to keep them warm or they ached.   I gave up my piano lessons.  I loved playing the piano.  Thinking the movement and stretching of my fingers would help, found it made them worse.  I waited 3 or 4 months but I finally saw a Rheumatologist.

The Rheumatologist

Gee, this was a bust, but what did I expect?  At least I knew the receptionist.  She used to give myself and my youngest daughter allergy shots years ago and still remembered me.  Good thing too, I would make use of my connection with her later.  The Rheumatologist examined my hands and said they showed no sign of Rheumatoid Arthritis, maybe Osteoarthritis, but nothing major.  He did however give me a six month follow up appointment and scheduled me for XRays just to ensure he wasn't missing anything.  This appointment with him just happened to be in late February 2009, just prior to my skiing episode.  I left his office feeling like a cry baby, somebody with a low pain threshold, a born complainer.
Well, March 16th on our way back from Sutton, Quebec after a 7.5 hour drive, we arrived on his office doorstep just before closing at 5:00 unannounced, no appointment scheduled before making it home.  We decided on this route rather than taking me to the hospital where waiting times lasted hours.  My husband had to practically carry me in from the car.  The receptionist took one look at me and scheduled me in for the following day as she had a last minute cancellation.  This time upon seeing me he seemed to take more of an interest and examined me more closely under the watchful and scrutinizing glare of my husband.  He seemed baffled.  He ordered some blood tests and set up a follow-up appointment in two weeks.  He thought it must be some kind of virus and would probably go away after it had run its course, maybe a couple of weeks, possibly six at most.  I left there in shock to think I would have to endure this agony for a possible two more weeks or even longer.  How??  I was strong, athletic, always managed to bounce back from anything.  I had survived nine surgeries in my lifetime, never down for long, always back at work within a few days regardless of the severity.  How would we get through this?  He arranged for the follow up appointment and asked that my husband not attend.  Okay, just how did he expect me to get there?  My husband was the collected one, I on the other hand, being in pain, totally confused, had a difficult time trying to explain the outcome of my appointments to my family or anyone else without his help.  Why did he not want him there?  He asked the questions while I just sat there in awe that no one knew what was happening to me.

Survival

Well, I still had the remainder of the week booked off as vacation anyway, so I was determined I would get through this just like my other medical challenges.  How long could it last, really.  I was strong, athletic and tough.  I was pretty much confined to the couch or the bedroom for the week.  I lay there and watched movies being too uncomfortable to focus on reading for any length of time.  I took some Tylenol 3's I found remaining in the cupboard from a previous surgery.  I took Advil.  I drank Scotch, Vodka, I drank wine.  I drank them along with the drugs.  My husband found a foot bath and set it up in the family room for me to use.  I had my feet in it constantly trying to stop the cramping.  When it was time for bed he used duct tape and taped my feet to some small 2 x 4's he found in the garage, he taped my hands to DVD covers to help ease the cramping.  This is how I was going to get through the two weeks ahead.  Drugs, booze, paraffin wax treatments, foot baths, the jacuzzi, duct tape and the love and devotion of my husband.  Unfortunately, the phone rang.  It was John's eldest daughter informing him that the youngest was at the school office, apparently afraid she had broken her ankle.  You see, John and I were only recently married.  August 2008 in fact was the date.  We still owned two houses.  One in Oakville, where he and his daughters lived, along with myself for the last few months.  I still had my house in Richmond Hill, fully furnished, just as I left it a few months ago.  John's youngest daughter was finishing her final year at high school in Oakville and his oldest was at Wilfred Laurier University in Waterloo.  My oldest daughter was living downtown and my youngest was attending Nippissing University in North Bay.  John worked in Mississauga, 25 minutes from their house in Oakville.  I still worked in Concord, 10 minutes from my house in Richmond Hill, 45 minutes to an hour to 1.5 hours from Oakville depending on the day.  Now, I was in Richmond Hill where I was most comfortable, his daughters Oakville.  So, after the panic phone call, he left and met them at the emergency room in Mississauga.  Sure enough Johanna's ankle was broken.  Here was John, now looking after Jo in Oakville and me in Richmond Hill.  I couldn't even cook for myself.  So he drove.  He stayed in Oakville, worked in Mississauga and drove to Richmond Hill at night to make sure I was fed, surviving and drove back to Oakville.  The strange thing was, I wasn't getting any better.  I just learned the best way to cope and survive.  Scared, for sure.  I called in sick for the second week.  It was March, our company's year end was March 31st.  I was the accountant, controller, the one and only they had.  At least being overly organized, everything at the office was ready for my return.  I wasn't going to be too far behind by missing a couple of weeks, but only a couple of weeks, no longer.  Okay, I made it through the two weeks, but I was no better, I still couldn't walk.  I went back to see the Rheumatologist, he still thought it was a virus, but ordered a bone scan just to be sure.  Now I had to figure out how I was going to get back to work.  Monday morning, with braces on both legs and the use of a cane, I crawled into the office up two flights of stairs.  There I sat churning out numbers as fast as possible while popping Advil like candy.  I'd work as long as I could stand it and then leave only to return the next day.  John was travelling back and forth from Oakville to Richmond Hill.  He would get me groceries, feed me when he was there and head back to Oakville.  He would try and spend one night a week with me and take me to Oakville for the weekends.  This was our routine.  Jo was going to be in a cast for six weeks at least and then would have physiotherapy following.  My two weeks turned into six and there was still no improvement.  The Rheumatologist said the bone scan was fine, he would refer me to a Physiatrist.  I went back to my family doctor.  He just shrugged his shoulders and said he didn't know.  "Come back in a couple of weeks if your still not better".  I knew then I was going to have to look after myself.  John kept looking on the internet for a cause, a name to put to the symptoms.  Somehow it became so important to give it a name.  If it had a name we could find a treatment.  Everything had the same symptoms.  MS, Rheumatoid Arthritis, Lyme Disease, Diabetes, and many, many others.  We weren't doctors, just hypochondriac internet junkies.  So, I decided to take the matter into my own hands.  I made it through year end at work, not well, no more than a few hours a day, but I did it.  My symptoms were getting worse.  The office staff would wheel me around using my office chair so I could go to the bathroom or sit in the lunch room.  They all took turns getting me ice packs and coffee.  I was helpless on my own but I was surviving.  The weekends in Oakville were taxing, I was trying to keep smiling, laughing, putting on a false face for the girls.  I felt guilty and began to wonder if it was all just in my head. The blood tests showed nothing was wrong.  The bone tests showed some Osteoarthritis, but I was not a wimp.  I knew something was wrong. Prior to this I was very happy, extremely active, devoted to my job and my new family.  In our short time together we had travelled to Antigua, Mexico, Spain, attained our Scuba licenses, taken Tai Kwon Do and Piano lessons together and spent weekends at the cottage in the summer.  We packed up my stuff, all my clothes and moved me back to Richmond Hill.  We would live in two houses until Johanna finished school for the summer or I suddenly, magically, healed.

The Doctor Dance

I decided to take matters into my own hands.  I previously had five knee operations so I thought I would just pay a quick visit to the Orthopedic Surgeon that did the repairs to get his opinion on the matter.  I phoned his office and asked if I could book an appointment at the fracture clinic to see him as I had ruined my knee again.  Just a little white lie.  My knee did hurt but not as much as the rest of me.  His receptionist said it had been over two years since I was there last I would need a referral.  I begged, I pleaded, so she booked me in.  After sitting in the waiting room for a couple of hours even with a scheduled appointment, he spent no more than three minutes with me.  I know how busy they are, but really.  He said it must be Lymes Disease.  No, I said, that had been ruled out.  He was going to order a bone scan.  I said that had already been done.  So, he summized nothing was wrong with me.  I jumped from the table at that remark and yelled, "Look at me.  You know me, how active and athletic I am, now when not at work I'm confined to the couch".  He said "Maybe that is your problem, your knee looks fine."  I explained as fast as possible all my symptoms, the blood tests, etc.  He said then it must be "Mono".  Mono?  "Yes", he said.  It can take three to six months, maybe a year before it settles down.  Just like Federer the tennis champ.   http://www.nytimes.com/2008/03/07/sports/07iht-arena.3.10811374.html  Looking for an answer desperately, this I decided was it.  I went back to my famly doctor and told him what the Orthopedic Surgeon suggested.  He did the blood tests.  It wasn't Mono.  I saw the Physiatrist, he did some elctrodiagnostic testing, an EMG, which can be quite uncomfortable.  He didn't know what was wrong.  He suggest cardio testing, a CT Scan, a Neurologist, etc. and wrote a letter to my family doctor requesting he make the appropriate referrals.  My family doctor didn't.  My family doctor referred me back to the Rheumatologist.  The doctor dance was just beginning.  I was frustrated.  My family doctor wasn't doing anything to help nor did he plan to.  He said trying to schedule an appointment with  Neurologist was just a waste of time, estimating in excess of a year wait time.  By then I would be better he said.  I thought I would pursue the allergy route.  I knew I was allergic to everything.  Maybe that had something to do with it.  I had been tested just a year or two ago and they claimed I was in the clear.  After taking allergy shots for 35 years, the allergist said they were gone.  I still had itchy eyes and throat and my nose ran like a tap, maybe he was wrong.  I picked an allergist out of the phone book and asked for an appointment without a referral.  He tested me and said I had allergies to pretty much everything and immediately started me on biweekly shots.  He said I should start noticing a difference immediately.  A month later, no difference.  My symptoms remained the same.  I saw the Rheumatologist again, he referred me back to the same Physiatrist.  The Physiatrist said it had to be MS or something muscular.  He didn't know and didn't refer me to anyone else, just the family doctor again.  Through all this I was still trying to work.  I tried Chinese acupuncture.  The woman was actually trained in China and spoke very little English.  I thought for sure I would get some relief.  I went 3 days a week for an hour each time.  She started on my shoulders, the needles just bounced out.  She couldn't even get them in, my muscles were so tight.  I started to faint.  She laid me on my back and put them into my abdomen instead.  She could perform the acupuncture there, but it didn't help my symptoms any.  She tried my lower back, I just jumped.  The needles would not penetrate the muscle.  After 4 weeks of this torture, we decided that acupuncture was just not going to work in my case, I would have to try something different.  She said I had better see my family doctor.  I decided to try a Chiropractor.  Big mistake, although he certainly meant well.  I would crawl in his office, lay on the table practically in tears, barely able to lift my head.  The headaches, the foot cramps, the pain all over was excruciating.  It was May 2009 now and the pain was beginning to concentrate more between my shoulders and in my neck.  The Chiropractor took X-Rays.  I had Scoliosis.  I took the X-Rays to my family doctor, he said they were Chiropractic X-Rays and set them aside. Meaningless apparently without a proper report attached.  He said they looked normal to him. Nothing out of the ordinary considering my age.  I asked if I could have a referral for Physiotherapy.  That he agreed to.  Again, I dragged myself out of his office.  I started Physiotherapy.  The Therapist said he had never seen anything like it before.  He had absolutely no idea what would cause all my muscles to be so contracted.  He worked with me three times a week trying to build up my strength and stretch my muscles.  I was getting stronger until he had me try the treadmill.  I would collapse with exhaustion.  Biking tired me.  He discharged me not really knowing what was wrong or how best to treat it.  By this point I could no longer hold my head up at lunch or dinner to eat.  Whoever was around would heat up my lunch or dinner and place it on a box so I didn't have to bend my head.  If my head bent, it would start to bop.  I wore a neck brace to work with a scarf wrapped around it.  I started getting the bops more and more frequently.  It wasn't just my head anymore, but my upper torso would go into these weird spasms, almost siezure like.  Totally frustrated and in great pain after work one day, I drove myself to a walk in clinic in Richmond Hill.  I saw a female doctor, who like everyone else was behind schedule and didn't want to deal with me.  I told her my story as quickly as possible.  She didn't want to do anything but said I should see my family doctor.  I cried.  I actually cried.  I, me, broke down and cried.  She told me it was against the rules she couldn't do anything for me.  I pleaded, I begged and said somebody had to do something because my family doctor was totally ignoring me.  She reluctantly gave in and ordered a CT Scan but said I was to do the follow up, that it didn't come from her.  Now well into August, I venture to the hospital for my long awaited CT Scan.  The technicians had to physically assist me to the scanner and try to get my head and body to stop bobbing long enough to get the pictures.  They decided I needed to be seen in Emergency immediately.  One of them retrieved a wheelchair and took me down to Triage where they proceeded to do their best to speed up the process for me to see a doctor.  The nurses in Triage were convinced I needed to see a Neurologist.  I called my husband and he met me there.  We were both excited I was finally going to get somewhere.  Seven hours later I saw the doctor on call, not an Neurologist at all.  He gave me luckily enough, but only 4, Clonazepam and told me to call my family doctor the following day as the results of the CT Scan were normal.  We got home between 1:00 and 2:00 in the morning.  My husband totally fed up with all the doctors and all my pain and misguided efforts decided to hire a private doctor.  Our benefit administrator had mentioned earlier to me the name of someone in Toronto, but is was costly.  By this point we didn't care what the cost was.  Somebody had to do something.