Saturday, February 3, 2018

January Update...Three Days Late!

Well...Old man winter has not been kind this year. It has been so cold and bleak here that I feel the winter blues have officially set in. I still do my eye exercises and therapy every day at least twice and sometimes three times. I've been trying to get back to practicing yoga 20 minutes a day as well to get ready for cardio again. I really love this YouTube channel (Cole Chance) for my yoga practice.  They average 20-30 minutes and there are a lot of basic poses that are accessible for my cervical dystonia. If I try something that is too difficult then I get upset and frustrated and want to quit. It's better to stick with poses I can do (even if they seem too simple) to create a sense of accomplishment. The third week of January my husband and I decided to get out of the cold and we booked a week in Florida on the gulf coast. We took our 8 year-old for a week of sunshine and felt the sugary sand in our toes. It was the first trip I have taken in over three years that was not medically necessary. It was nice to see my husband and son have a good time and relax. This whole journey has been difficult on everyone and it was a much needed break from everything. The day after we got back from our trip it was Botox day. I tried 250 units instead of my usual 200. I am anxious about this, but I figured it was worth a try. I'm praying my head does not flop. When it does, it is when I am eating or brushing my teeth. I'm hoping all of the exercises and and eye therapy are kicking in and it won'be too bad.

My son in front of the beautiful Don Cesar Hotel. (and no, we did not stay there...) I love architecture and this grand building is such a gem.

Saturday, December 30, 2017

December Update...

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Well, the holidays have come and gone. I am hoping that I can have a fresh start in 2018. I suppose that is what we all hope for.

The positives are that I am driving again and getting out more. Having some independence back is HUGE! I can make small trips to the store and take some of the burden off of my husband which is saving our marriage and our sanity. I'm still seeing Dr. Kukurin once a month to monitor my progress. I have less pain and feel like all of the hard work is finally paying off. The pain that I do have seems to be more localized and not as widespread. It is mostly my on the right side of my jaw, temple, neck, and shoulder. My left quad and hip are usually tight and sore as well. There are days when I have other areas flare up but those are my current "hot spots".

I still try and fit in all of my therapy and take rest periods during the day. I am very pleased with my progress. Of course, I would love to accelerate this progress but I have learned to be much more patient than I used to be. Between the Botox and the neuroplasticity training I am hopeful that I may someday be able to do some of my much loved activities again and possibly go back to work.

I still do the rotator video and Left Brain exercise videos from Dr. Antonucci. I also use the laser gym for eye therapy. I do deep breathing exercises 2-3 times a day for 15-20 minutes.

The last few months have not been so great. After my last Botox injections (Oct 24th) I got my usual flu-like symptoms and felt pretty bad for the first two weeks which is normal for me. Of course the doctor who does my injections said that I am the only patient that hast this type of reaction. This time the fatigue and symptoms of congestion and my cough lingered. I felt like everything I did was exhausting and I really had to push myself to go for a walk or swim. I was also having a lot of skin flare-ups on my neck, face and scalp and made an appointment with a dermatologist. She told me that I have a staph infection and would need to take antibiotics for 1 month. My skin is starting to clear up, but then we got struck with the flu. The whole family got it so Christmas was a bust. The most difficult part of being ill is that my dedication to my therapy and exercises has fallen short. I feel so tired and weak all of the time and cardio is the last thing on my mind. On good days I try and do it but there have not been very many good days. I still do my eye exercises daily and try to stretch but I am trying to find the strength to get back to physical exercise that Dr. Farias finds so important to bring the body back to balance. I was diagnosed years ago with an immune deficiency (selective IGA) and I made an appointment to see the immunologist to get retested which is in January. It has been 5 years sine I have seen her.  Hopefully I can get this issue addressed and figured out so that I can get moving again.

I wish you health, happiness, peace, and joy.

Happy New Year!

Monday, November 20, 2017

When you are told not to let your disease define you.

I get a lot of advice from well-meaning friends, family members, and my doctors. Sometimes it is helpful and other times I want to implode. I understand that my chronic illness is difficult for them to understand and most of the time it seems like I am consumed by my dystonia.

On Facebook I post a lot of stories and and share updates from my amazing doctors. I usually get a few "likes" from other patients, doctors, and my closest friends who know my struggle. Everyone one else has probably unfollowed me or just keeps on  trolling on through. I am hoping to spread awareness about dystonia but the only people looking are already aware.

What many of them have said to me is "Don't let dystonia define you". "You are not dystonia". "Maybe if you tried a little harder not to think about it". "Have you tried this - (Insert endless suggestion list here) exercise, herbal tea, prayer, books, diet, etc... ? 

 What they don't understand is that when you have dystonia you never get a break from it except when you sleep. Sleep does not come easy for me and I have suffered since I was 19 ( now 30 years ago) with falling asleep. I would take sips of NyQuil back then. Later I used Tylenol PM. Then Amitryptaline. Then Xanax. None of it helped long term. In 2011 I had insomnia so bad I ended up admitting myself to a inpatient psychiatric hospital because not one doctor could find the source of my neck pain, anxiety, gastrointestinal issues, hearing loss, immune deficiencies and headaches. I thought I was nuts.  In the Psych hospital I was diagnosed with PTSD from a childhood trauma. There they gave me trazadone and celexa. It helped for about three months then back to feeling wired and tired and I still had crazy pain in my neck. When my head finally twisted and I had tremors and pain so bad I cried all night and most days I was finally diagnosed with cervical dystonia. (which four months later I found out that the cervical dystonia was secondary to the oral dystonia which is my primary diagnosis). It took almost thirty years to for me to get properly diagnosed. One doctor prescribed me ambien and it was amazing and the best sleep I'd had in years. Unfortunately , they only gave me a 30 day supply and said that there were too many risks involved. I was willing to sign a waiver or do anything for more. I guess there have been reports of people driving cars and sleepwalking while taking this drug and doctors don't want the liability. I totally understand, but at the time it was incredibly frustrating. Now I take herbal supplements that seem to work fairly well. Controlling my anxiety has been the greatest hurdle.

So I have been defined my whole life by dystonia. Dystonia was very sneaky but now I know the "why" to all of my symptoms. All of these symptoms are still with me. Every day. I try not to complain as much to anyone. On days when I can't feel my left foot or my lip and cheek start twitching - it's hard to ignore. When my left quad feels like a cable or my foot gets stuck in a "charlie horse" cramp - it's hard to ignore. When someone says, "look at this" and I cannot turn my head in that direction without pain or without physically willing and pushing myself to do it-it's hard to ignore. When I have insomnia and start to panic thinking about the trauma of being locked up for 8 days I get scared and that is hard to ignore. It is impossible not to feel "defined".

I am trying to get out more and the Botox has helped ease the spasm and pain along with my exercise regime. That regimen takes up to 3 hours a day. My whole life has been spent dealing with dystonia and still is. Now that I know the definition of dystonia I can redefine the meaning and hopefully help others who feel lost and are suffering. If dystonia defines me, then so be it. 

You can see the published version on "THE MIGHTY" HERE

Sunday, October 8, 2017

October Update....

It has now been three months since my visit to Toronto to attend the cervical dystonia workshop with Dr. Farias. 

I diligently have been trying to do the therapy and exercises Dr. Farias showed us along with the eye movement therapy and exercises from Dr. Kukurin and Dr. Antonucci. It adds up to about three hours a day. By the time I am done with the therapy and taking care of my son I am tapped out. I have seen significant improvement compared to where I was last year. My pain is lower. On a scale of 1-10, last year was a 10. Now I average a 6. I no longer think about suicide or running away. I am able to walk a bit easier. I drove a car for the first time in 2 1/2 years. THAT is huge. I was so afraid to try it because the last few times I drove in 2014 my head would shake uncontrollably. That did not happen! The Botox injections combined with the exercises and therapy are working! When people ask if I work it is hard to answer. Yes, I DO work. Harder than you can possibly imagine. Managing dystonia is my full-time job. On days when I am not able to do the therapy I can feel my symptoms getting more intense and my muscles tighten up. The deep breathing is key. I try and do the cardio at least three times a week and next week I want to start swimming again. This summer I swam almost every day it felt amazing and I was getting into better shape physically and mentally.

I tried to go shopping with my friends and it is still hard to be "in the moment" when I'm trying to control every movement I make. Nobody knows that I sometimes can't feel my left foot or that I have shooting pain in my neck. My muscles have searing, hot pain and I get a rash that is so itchy I could scream. When I try and look to the left I have to really concentrate and try as hard as I can to do it fluidly and without spasms. I am doing so much better but it is all relative. This pain is just more bearable. Not acceptable, but bearable.

Saturday, July 29, 2017

July Update. The difference between torture and therapy is the outcome!

It has now been seven weeks since I saw Dr. Joaquin Farias in Toronto and started a whole new regimen of therapy and physical exercises. 

Most of the exercises are very similar to what I have been doing with Dr. Kukurin and Dr. Antonucci. The difference is that there a specific order and sequence to the process. Deep, diaphragmatic breathing is something I had been trying to do since I was diagnosed, but never felt the benefits because I was not breathing properly. I was only doing it once a day for 20 minutes. Now I am doing the breathing exercises three times a day for 30 minutes and it has been very beneficial when combined with the other therapy and physical exercises. I am still using some of the exercises from Dr. K and Dr. A. as well as the new ones from Dr. F. I also get a massage from Linda at Dr. Kukurin's office once a week. That has also been very therapeutic in trying to lengthen the shortened muscles in my neck and shoulder.

Originally Dr. Farias analyzed my gait and said I walked "half sexy, half like German Soldier".  Not half bad, right?

He said that to correct my gait I needed to start jogging or running to open up my chest. By doing so, it would help me start to walk with a better posture and less rigid. Unfortunately, I had pulled my hamstring doing yoga the week before we went to Toronto, so I was very sore and needed to let that heal. Also, it has been unbearably hot and humid or raining every day here in Pittsburgh. So instead of jogging, (which I did try for about 4 days and I felt the difference in my head and neck pulling, but my hip and hamstring were not ready yet) I started the cardio dancing. 

The first few days I felt ridiculous. I took dance lessons as a kid and remembered some moves and at least have a sense of rhythm. After a few days my body finally started to let go and I felt more fluid and relaxed in my movements. 

Dr. Antonucci had asked if I had tried dancing and suggested it the first time I saw him in April of 2016, but I had not had Botox yet and was in a lot of pain. I am not sure if I would have been able to dance as well without the Botox. I think it may have been frustrating.  Dr. Farias has other patients who dance and do not use Botox. Once again, the difference is the sequence of when I do the cardio in Farias's method. I don't just wake up and go for a jog or start dancing. 

  • I eat. 
  • I rest. 
  • I breathe. 
  • I stretch. 
  • I relax the tongue. 
  • I do eye movement exercises. 
  • I do the neck exercises.
  • THEN I do the cardio.

 I also have also been swimming and floating as much as possible.  I have my 7 year-old son at home with me and this regimen takes up a lot of my day. We are lucky enough to have a community pool down the street that we can walk to. Swimming is a good way to get us out of the house and spend some fun time together. I can also use the swimming as my cardio for the day.  I use a kick-board to support my arms and have been able to do a couple of laps without it recently. 

Here is a general outline of my daily regimen.

  • 30 Minutes of Breathing, 3x per day
  • 15 Minutes of Stretching/Video exercises 3x per day
  • 30-40 Minutes of Cardio-Dancing/Walking/Jogging
  • 30-60  Minutes of Rest after eating. No TV, Screens, etc...

All-in-all it is a lot of work and some days I just want to say, screw it and wish it would all magically go away. But obviously, that is not going to happen. I do feel less pain and I do feel like I am making some progress. I had my most recent Botox injections this past Monday and my neurologist noticed a significant difference in my posture and pulling. He did not see very receptive to the "alternative" therapies and I think he feels that the Botox is the method that is doing all the work. For me, I know that it is the combination of both. 

I just feel so lucky to have found such incredible doctors and therapists who just want to see their patients get better no matter what the method is.