What is a Spoonie or The Spoon Theory?

I learned a new word this weekend for people that struggle with chronic illnesses such as myself. The word is Spoonie or Spoonies. At first, I thought that was a beautifully odd thing to have on your profile but I have friends that love Sporks so it did not seem unusual to me. Then, I became instantly curious about that the word might mean and started looking for all the information I could find about the Spoon Theory. So, a Spoonie is a person living with chronic illness, that identifies with Christine Miserandino’s Spoon Theory. Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.  I really like this word and this theory, I think that sometimes it is really hard to explain what it is like to have a chronic illness. I found a youtube video from a while back that explains the spoon theory and how it became a symbol of chronic illnesses. I hope you can share this video or article with anyone in your life that has a chronic illness or family and friends that may need some help understanding your daily life with a chronic illness.  I think that is the Internet has become a great tool to express what it is like to live with a chronic illness. I hope you find this story inspiring and maybe you will write the next great story or chapter for chronic illness awareness.  I will leave you with this quote  “Start by doing what’s necessary; then do what’s possible, and suddenly you are doing the impossible.” -Francis of Assisi

How My Blog About Charcot Marie Tooth and Scoliosis Has Helped Me

It has been a few months since I started this blog and I have learned a lot about myself and others that have both illnesses. I started this blog as a way to document someone living with CMT, Scoliosis, and Stenosis and the tips I would find along the way but what I discovered was something completely different. I was inspired by the communities that are helping and supporting one another. The people I now follow, read, and learn from all came through me starting this blog. Also, writing a post about a subject made me look at the subject more objectively which has helped me discover causes for issues that have plagued since childhood. This blog has given me a way to express some aspects of these illnesses that I not been able to communicate so clearly. This has allowed people close to me and beyond to understand aspects of living with a chronic illness and what effects it has on my daily life. I have had people that have known my whole life that did not know I was battling a chronic illness which was very surprising to me. I am not concerned with people knowing or not knowing if I am not well but it is a good thing for people to hear Charcot Marie Tooth,  and Scoliosis so if they hear it from anyone else they may have some familiarity with the subject or at least know someone that has it.  I am truly grateful and greatly appreciate all my social media followers, blogs subscribers, family and friends that have taken the time to read my blog and I hope you will keep reading my posts and continue to follow me on this journey. Thank you so much. I will leave you with this quote “After nourishment, shelter and companionship, stories are the thing we need most in the world.”― Philip Pullman

Being Yourself

Sometimes being yourself can be the hardest thing to be. I have always been a bit different. I have a different perspective on the world. I never really followed any particular path but I always seem to land where I am suppose to be. CMT has made me realize that sometimes our weakness can our biggest strengths. I feel that the unique person I am can only come from being a person with CMT. I think that when you are being yourself you encounter a lot of people that try to discourage you from being yourself but if you stay true to yourself, the reward will be worth the strife. I find beauty in moments that I may not have paid attention to. I marvel at the simplest things that other can do that I cannot and I appreciate the things I can do that others may not be able to do. It is easy to be influenced by society’s pressure to conform but just like a lump of coal that has pressure applied to it a diamond can be created. Being myself is the most powerful thing I can be and I have learned that I am not willing to give my power away for any reason. I have done this in the past only to regret it. I know that sometimes life will test me but I feel that I have failed a lot of those tests in the past. I have discovered that being myself is the cheat sheet of passing all of life‘s tests in the future. I will leave you with this quote “To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” 
― Ralph Waldo Emerson

Quote Via Goodreads

(C)2018  Sy On Life 

The Long Journey to My CMT Diagnosis

They say that the journey of a 1,000 miles begins with a single step. The long journey to my CMT diagnosis began with a single misstep when I began third grade and for the first time had to climb a flight of stairs to get to my classroom. A teacher noticed that I was having trouble with the stairs and informed my parents, setting off the search. It would be 25 years between that misstep and my diagnosis.

First, my parents and I met with an orthopedic doctor who was very well versed in neurological diseases. He told us that it was either muscular dystrophy, Charcot-Marie-Tooth or Guillain-Barré syndrome.  I spent the following summer of my third-grade year being tested for all types of diseases. I had an MRI, X-rays, a gait analysis, and an EMG.  When all the results were in, I was told I had scoliosis (an S-curvature of the spine) and Guillain-Barré syndrome, or GBS.

I began living my life thinking I had Guillain-Barré. I was always a curious child and I read everything I could get my hands on about it. I never felt that my symptoms matched up with GBS but I ignored my feelings of doubt and told myself that maybe my version was different than the typical one.

My life went on this way for the next 25 years. Then I started noticing a dramatic change in my energy levels, my ability to work and my ability to do normal daily activities. I started to have injuries, pains, and problems doing things that I had always been able to do. So, I visited my doctor again and he said I should see a neurologist. I took the same tests that I had taken as a child, but this time the results and the diagnosis were different: Charcot-Marie-Tooth. I was shocked but not surprised if that makes sense because I had never truly believed I had GBS.

After reading about CMT and its symptoms, I was almost sure this was what had plagued me for my entire life.  I was upset because I have had so many bad days and so many issues that could have been explained and treated with the right diagnosis. The next step was to find out more information about CMT so I joined the CMTA. I also became Co-Leader of the Chicago North CMTA Branch.  This was one of the best decisions I have ever made in my life. The CMTA helped me find the resources that I needed to better understand and support my CMT. Also, the CMTA is funding a research that gets closer every day to finding help for those of us who have it. Although I am no longer part of the CMTA, my time with the organization was life changing and I would recommend it to anyone who is just starting to learn about Charcot Marie Tooth and needs a great resource for help and information.

While I had all of this new information and the best resources from the CMTA, I was still not 100 percent convinced that I had CMT.  So I decided, in my role as a CMTA branch leader, to bring in Julie Hedrick of GeneDx to speak at a branch meeting. Like many people, I was concerned about the expense of genetic testing, but Julie and the team at GeneDx helped me through the process of getting genetic testing done with my insurance.  After a few months, it was confirmed that I have CMT4C.

According to the CMTA, CMT4C is caused by mutations in SH3TC2 and has a wide variability of severity. This type of CMT involves childhood onset of sensory and motor neuropathy in the lower limbs and high arched or flat feet. Patients often have mild difficulty walking and some may need a wheelchair. Scoliosis is almost always present, usually onset in the first two decades. The onset of neuropathy symptoms range, some beginning in the first decade of life, and others in adulthood. Lower limb and upper limb weakness is common, beginning towards the hands and feet and sometimes extending above the elbows and knees. Hearing loss, vocal cord involvement, and facial paresis have been reported.

I am a firm believer that if something does not feel or seem correct, always question it. For years, I felt that my diagnosis did not fit me but I accepted it, whether because I was misinformed, in denial, or just putting a Band-Aid on the real issues I was having. Don’t do what I did: Get the right diagnosis for yourself and get the help you need to deal with your CMT.

(C)2018  Sy On Life