You do what you have to

Some people say they are proud of me or they don't know how I do it. Living with dystonia, gastroparesis and chronic pain is not easy, but I do it because I have to. I could lay around at home taking my SSDI payments and watching soap operas all day, but for me that would not be living. It would be a depressing crappy life that I don't want. So I am doing what I have to in order to live the life I want. I desire peace, happiness and joy in life. To achieve that I must take my life and suffering as it comes. I do my best to endure the suffering and enjoy each minute of happiness and success that I find in each day. I try to live in the moment. It is the only way to survive and live life to the fullest.

Yesterday I had a dystonic attack at work in the lab. Another graduate student was using a tone to train his mice that had a very high frequency and triggered my attack. I have had mild attacks at work before, but never a full body severe attack like I had yesterday. As usual I had to convince people not to call the paramedics. Attacks are very scary to people who see them because they look like seizures only I am conscious. I managed to calm everyone down and get some medications to help get the dystonia under control. We also stopped the tone of course. Unfortunately once an attack is triggered it usually takes a while for me to recover. Luckily I was doing a lot better after about a half hour or so. I think I am just a bit more prone to having attacks since my recent problems with the gastroparesis. My body is just stressed a bit and can't handle as much as before I had this flare up of the tummy troubles.

Today I am feeling better and I'm taking some time to read and work on a paper I am trying to get published. Life goes on and for the time being I am managing fairly well. Peace to all, Jen

The picture is my son's first snowman. He was so proud.

Climb On

Before I aquired dystonia I enjoyed rock climbing in the Tetons of Wyoming with my father and brother. I started climbing and learning technical rock climbing skills with my Dad when I was very young. At age 13 I started taking classes every summer at Exum Mountain Guides Climbing school in the Tetons. My father, brother and I summited the Grand Teton when I was 17 years old. It was one of my greatest accomplishments and taught me many skills that help me persevere when life throws me curve balls like dystonia. I will never forget standing on the top of that mountain and the years of work that it took for me to acomplish that feat.

Today I am feeling a bit better about my dissertation work and my struggles as a graduate student. I am just taking one day at a time...trying to focus on living in the moment and getting my work done a little bit at a time. This is hard when dystonia is running the show.

In the last several weeks and days dystonia seems to be grabbing at every bit of me. I have noticed that I am having more and more trouble manipulating equipment in the lab...particularly with my left hand. Typing is also getting more difficult with my left hand again and I am often finding that my fingers are curling and cramping with certain tasks. When I first acquired dystonia at age 19, my hands became so cramped that they were nearly impossible to use. I typed with one finger on each hand and had to be fed by my family and friends because I couldn't hold on to a spoon or fork. My dystonia improved a lot over the first few years that I was off of the medications that caused it...then it stabilized for the most part with some fluctuations from time to time. When I got pregnant it improved even more and I was thrilled. I had hoped that the improvements would remain after I had my son, but the dystonia has been slowly worsening since I had him. I'm not sure why...maybe it is just getting back to how it was before the pregnancy. There is research demonstrating that hormones like estrogen can have effects on movement disorders probably by modulating dopamine transmission in the basal ganglia. Sometimes I also wonder if I just have a genetic predisposition for dystonia and maybe I would have developed dystonia eventually even if I hadn't been exposed to the neuroleptic drugs.

I made an appointment with my doctor and I will ask about increasing the Baclofen. It is also possible that I may be just building up a tolerance to the Baclofen and will need to increase the dose to get the same improvements I was getting from it when I started back on it several months ago.

I am very fortunate to be able to be in graduate school and living my life so fully. I get frustrated when dystonia gets in my way, but it is good to remember how bad it was and be thankful for what I have now. I also find solace in remembering my climbs with my Dad and my brother. When climbing, it is important to talk to your climbing partner to assure them that you are there and to protect each other in case of a fall. Holding and controlling the rope to prevent your partner from falling is called belaying. When you begin to climb the belayer shouts "Belay on!" and you shout back to him "Climbing!" to which he replys "Climb On!". This way you know you are safe to climb because your partner is ready to help catch you if you should fall. Each day of fighting the cramping, pain and twisting of dystonia and getting through graduate school would not be possible for me without the support of my family and friends. They are all telling me that it is Ok to "Climb On" and they are here to support me when life gets tough...and so now I am "Climbing On" in the midst of the chaos of this crazy life.

The photo was taken by Alex Lowe, our guide, on the summit of the Grand Teton.

Stepping back

Today I am feeling overwhelmed by everything. My dissertation work is difficult and tedious. I wonder if anything fruitful will come of it. It seems that it is going to take me forever to finish all these experiments. My hope is that it will provide possibilities for new avenues of treatment for people with neurodegenerative disease and movement disorders. Today that seems unreachable, an unattainable or unrealistic goal.

I have also been feeling that I am working in an environment where there is sometimes little compassion or care for others. Often the people I work with engage in gossip and talk with disdain and even hate about others behind their backs. I believe that everyone deserves respect regardless of their background or qualities. It is hard for me to understand why some people don't feel that way and I am disturbed by the gossip and jeering. I often feel like I should say something to make these individuals aware of their hurtful speech. At the same time I feel that perhaps they will eventually recognize why I ignore it. I just wish that we could all work to maintain a compassionate, peaceful workplace. I feel that having right speech is important for promoting peace and compassion for all. I sometimes have trouble maintaining right speech, but I feel it is very important. I understand how speaking poorly of another is just as hurtful and demeaning to me as it is to the person it is being directed.

Dystonia is agonizing today as well. I am having severe cramping in my left foot and pain in my back and neck. I wonder if I should consider increasing the Baclofen or if it is just stress making my body feel worse than usual.

Sometimes I wonder how I keep persevering when I have a bad day like today. I guess it is because I usually step back and try to look at what I do have to be thankful for. It is hard but I have to remember to live in the moment and find peace and goodness in the small things. Meditation has been a blessing...giving me the time and place to step back and find the peace I need.