So, it has been a productive day in the Medical area…I’ve gotten another diagnosis today to add to my long list of medical problems. Yes, its very rare, just like me…LOL,  it affects 4 in 1 million people. I get to be one of the 4 lucky ones.

I was diagnosed with Sneddon Syndrome, so I did what any other person would probably do to find out more info. I got on Google and clicked on this site. http://sneddonsyndrome.org/Resources.html Wow, reading all the information here is like looking up the definition for Robyn in the dictionary and all that it says about Sneddon Syndrome would be right on the mark! I’ve been disabled going on 24yrs now. I was working in the Fashn industry having the time of my life when at the age of 20 I had my first stroke. I was then dx with Systemic Lupus Erythematosus.  I went through rehab to learn to walk and talk, just to get better and end up having another stroke.  I was then dx with Antiphospholipid Syndrome or Anticardiolipin Syndrome. I have had uncontrollable blood pressure since I was 20 (my bottom number is always right under my top number, ex: 138/108) I suffer from tachycardia and my pulse is rarely under 100 resting. They discovered I have mitral valve regurgitation. I’ve had seizures in the past and several more strokes or “episodes”. Just the other day I was commenting on how my hands and legs were tremoring.  I would always have the issue with my fingers and toes losing color and going numb, I have since been dx with Reynaud’s. I have had to deal with the Dr.’s in the emergency room thinking I was a nut case because my migraine was so bad that I lost my right side and my face was drooped.  They couldn’t imagine how someone so young could have a “stroke”.

I suffer from migraine headaches quite often making it extremely difficult to live a normal life.  I find myself shut up in the room for hours, sometimes days at a time. The pain I suffer makes life …LIFELESS! I subscribe to around 10 different Fashn magazines, I enjoy following Fashn anyway possible, I Twitter, Facebook, etc.,…that is, Until I have days like the last 3 weeks! It’s all I can do to flip two pages in a magazine or look at some of my favorite Fashn sites, God forbid I want to go to any Trunk shows, Fashn Events, or even just the mall…No, that’s not happening!  So, my patience has been tried, I’ve been finding it difficult to stay optimistic when the things I enjoy aren’t even plausible.

This is where my Faith has to come in to play. I know that …”this too shall pass”. I’ve managed to make it through 24 yrs of Medical Chaos, flat lining…seeing the “Golden Light” and here I still remain.  I know God has me on this earth for a purpose or He would have taken me and kept me when He had me.   So, I stand Strong and keep my Faith and continue to do the One thing I have ALWAYS truly loved;  Fashn, every shape and form of Fashn I can be a part of, I will.  I have to stay positive and be as stress free as this world will allow. Let me  tell you, it gets Real Old!  I’m allergic to more and more medicines that its’ making it difficult to treat me.  Today may have been a TRUE MIRACLE though!…I’m starting some new medications and were thinking Positive!

I’ve had new Dr.’s since February of this year and finally, today, my Neurologist has given me an answer!!  I don’t understand Sneddon Syndrome, but EVERYTHING it says here, is what I’ve dealt with and more for almost 24yrs. I’m so thankful to finally have an answer and more importantly to have this site to help me understand I am Not crazy and there really is something seriously going on with me and its Scary. (Although a lil’ less scary now that I have an answer.

A Great Big Thank You to my neurologist, Dr. Perrine for finally Cracking the medical mystery I’ve been suffering with for far to long. Also, to This Sneddon Syndrome Site

Fashn and Faith for Recovery…keeping me Optimistic, Positive

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