AT LAST

After a crazy long drive to Toledo, we went to my appointment at the university of Toledo medical centre. I was seen by a third year medical student first, and then we met Doctor Blair Grubb. After two year very long and difficult years, myself and my parents found relief in just seeing this doctor!! There were lots of tears were shed. We sat in awe for three hours, as we listened to this remarkably smart man, who cared tremendously about his patients. Doctor Grubb taught us so much, and gave me two official diagnoses. I hope you are able to understand?

My first diagnosis is postural orthostatic tachycardia syndrome or POTS for short. This is what I have been sharing with everyone, as for I had a working diagnosis of POTS for over a year! I now have a concrete diagnosis, and now have more information to share;

I have the genetic form of pots, which means I was born/made special. When we were are made into a human, we are made just like a building, from the materials, to the amount of each  material, is slowly made and your genes determine how you will look inside and out. Sometimes in rare occasions people are made with more of one thing, this creates an imbalance when building everything else. These can be very small imbalances that are passed down through generation to generation unnoticeably. Eventually the role of the dice will lead to one special person that gets every small imbalance passed down to them which creates a big imbalance and shows all the symptoms. I turned out to be that role of the dice that causes me to be special and not broken!

I will never be like how I used to be, and I will never be able to have a job that requires to be on my feet. This is a huge change in my life and is going to take time to adjust, and get more OK with the reality of my new beginning. This is as hard if not harder on my family than it is me.

My second diagnosis is harder to explain. Dystonia, which is a neurological movement disorder. Our muscles are constantly producing chemicals that are sent to a part of the brain that allows our muscles to do what they are needed to do to walk, talk and write. If this part of the brain cannot process the chemical being released than our muscles “freak out” and begin to contract, twist, shake and do anything to get the signal to the brain. This “freak out” is what happens to me. There are many types of dystonia. Dystonia can effect few to all parts of the body. In my case the whole body is effects in what looks like a seizure. Dystonia has an unknown cause and does not have a cure! There are medications to help with some of the symptoms, but as of now there really isn’t anything to make it go away. The severity of dystonia can range from episodes to constant muscle shaking, pain and discomfort. As of know that is the only information I know about dystonia. There is very little information about dystiona, as for it is so puzzling to doctors. I will continue to read and learn about dystonia.

My family appreciates all the prayers and blessings so much. You all have given us that extra strength through all of this. Please know this is not sad news it’s the news we needed to step forward and look at the future with a new look and perspective.

All the best to everyone and god bless.

- Hannah Roberts