Please extend a very warm welcome to my first ever guest blogger. Bee has only been following my blog a very short time on my wordpress site http://www.themyastheniakid.com ( I also blog on blogger http://www.themyastheniakid.blogspot.co.uk).
I “met” Bee through the comments she regularly writes on my blog posts. Always thoughtful and kind I began to really look forward to what Bee had to say about my latest post. A few days ago I asked Bee if she would do me the honour of being my very first guest blogger and to my delight she agreed.
I have been thinking about having guest bloggers on my site for a while now but other than my family and friends there had been no one to ask. Bee’s comments always made me smile and it struck me that she would enjoy the opportunity to share a little piece of her story on my blog.
Bee also suffers with an invisible illness, its called Dystonia. I wont tell you too much about it as I don’t want to spoil what Bee has written.
So in her own words I will hand you over to Bee.
Bee’s first Blog Post:
I am Bee, which is my nickname. I am a 39 year old,wife, Mother of a 12 year old daughter and 15 year old son. I am quickly encroaching on 40 years old, which my son loves to remind me of as often as possible.
I was diagnosed with a Neurological Movement Disorder, Cervical Dystonia also known as Spasmodic Torticollis in October of 2009.
I had headaches for approximately 10 years, before I was finally prompted to go to a neurologist in 2009. Fortunately the neurologist I saw had trained in the area of Dystonia. I was so fortunate to see him because it often goes undiagnosed or is misdiagnosed. He was wonderful in every sense of the word. I will always be grateful for his kindness, professionalism, and collaborative approach to my care. I was relieved to know why I had headaches but I did not know what was in store for me in the upcoming years.
The definition of Dystonia provided by the Dystonia Medical Research Foundation:
Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles. Dystonia is classified by: 1. clinical characteristics (including age of onset, body distribution, nature of the symptoms, and associated features such as additional movement disorders or neurological symptoms) and 2. Cause (which includes changes or damage to the nervous system and inheritance). Doctors use these classifications to guide diagnosis and treatment.
We know where mine is located in my body but we don’t know the age of onset, or the etiology. I have had genetic testing but it didn’t reveal any insight.
I would like to share a little bit about my treatment and how it has impacted my life, as well as, my family’s. Hopefully I can provide you with a part of my journey without boring you to tears. First and foremost, I realize that I am fortunate because I know many others suffer far more than I do.
Of course I have been told that I am a complex case and not the standard kind. That pretty much describes me in general, so that works out perfectly. I do not twist or tilt to a particular side like many people with Dystonia do. I am more or less in somewhat of a stuck position. So to many I don’t appear sick, it is another “invisible illness”.
So onwards to the very thrilling aspects of my treatment that have taken place over the last few years. I began with oral medication, which did not work well with for me. I was so tired and impacted by the side effects. I moved on to Botox injections, not for vanity or cosmetic purposes. Botox is a toxin, which paralyzes the muscles, it comes from the Clostridium Botulinum bacterium .
I began with 100 units of botox (given to me via injections). I gradually moved up to 200 units and not forgetting to mention I still remain on oral medications.
I often hope I am trading one treatment for another. I have been strongly mistaken in ever thinking one treatment would replace another or that one treatment would magically be the cure. Dystonia is an incurable condition, Drs like to call this a “treatable condition”.
The last time I moved the part of my body affected by Dystonia, it was almost two years ago.
Since that point my treatment has changed quite significantly. The amount of botox I receive began to be steadily increased. I now receive 400 units of botox. Just to put that in perspective when people get botox for frown lines etc. the dosage is typically somewhere around 10- 20 units.
During this time frame I also began taking the oral medication Baclofen, which is a muscle relaxant. I am now jumping forwards in time… Because my Baclofen was continuing to be increased orally and the side effects impacted my daily functioning, I have since had the Intrathecal Baclofen Pump implanted.
I have a device the size of a hockey puck in my stomach and a catheter in my spine that administers medication continuously as well as additional boluses in 4 hour intervals. The side effects are supposed to be decreased because the dosage is much lower due to the way the drug is administered. At this point adjusting the dosage is ongoing as we try to reach the right dose for me.
Additionally I am now up to 500 units of botox for Dystonia as well as Migraines. My Migraines were initially diagnosed as chronic daily headaches. It has been almost 8 weeks since I had the Baclofen Pump surgery. So as I said earlier I continue to add treatments in the of hope of limiting other medications. As of yet this has not happened, we will see what the future holds.
Now that I have entertained you beyond words with my abridged medical treatment I will provide you with a quick summary of the impact on my family!
As a mom I feel much guilt, as there are many negative ways my condition has impacted my children. They have had to live through the side effects of numerous medication changes.
When our daughter was about 9 years old she saw a commercial for a medication that was the worst one I was ever on. She held her fingers up in an X, I quickly knew that medication changes were not a joyride for myself or my family.
I could tell you many more stories about medications but I will spare you the excitement.
I worked at the beginning of my diagnosis but was so tired from the pain and the medications I was on. I had to stop working, which I have found very difficult to deal with emotionally.
Fortunately I have a rather angelic husband, that not only loves me but also tolerates my craziness. He does the things with my children that I can no longer do. I often ask my children if they remember the many things I used to do with them.
On a positive and very proud note our children have grown up to be very compassionate and understanding. They are always thinking about whether or not it is in my best interest to attend activities, based on my comfort, the length of time etc. They are helpful, loving and kind. Of course I still feel guilty but believe that Dystonia has had a role in shaping their wonderful personalities.
I could continue to go on and on about my experiences. Perhaps I will be featured another time on Rach’s blog.
Thank you so much for the opportunity. 🙂
Best Wishes to everyone.
Many thanks go to Bee who was kind enough to share her story with us. I have added some links in case anyone wants to understand in greater detail some of the issues discussed by Bee in her blog post.