Archive for November, 2010

Sneddon Syndrome???

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. 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


Faith & Fashn 2my Rescue

So far today has started off as an Ehh day because I went to bed in a bad state!  The one thing I’ve always said should Never be done, just as it says in Scripture,…”Never let the sun go down on Your ANGER” well, guess what, I did!!

I woke up today wanting it to be a better day than the night ended,  so I’m making a conscious effort to get into the “Positive state of mind”, rather the easy way out and pull the SILENT TREATMENT!  I know now from experience that staying angry only causes Me Pain and Anguish.  When a person holds on to anger it manifests its way into an “ailment” of sorts, so for someone like me who has Lupus, Fibromyalgia, Chronic Migraines and Heart issues, that my friends could be the worst thing.  I’m dealing with these aggravating  health issues EVERY single day and all I want when I wake up is to…just Have a good day!

So today, at this moment, I’m going to be optimistic, Sucking it up, and putting on my Smiley face.  I am already feeling the tension in my neck and the rapid heart rate and I’m not gonna end up with another Migraine.

Today, my friends is a new day!…I got my new Marie Claire magazine yesterday and I’m gonna be heading out to Macy’s ~Yahoo!…I’m feeling better already!Again, I’m going forth by Faith, putting all my worries aside.  I don’t need any other reasons to add to my exhausting Pain as it is!   Fashion 2 the Rescue!

…Love God  …Love Life

Its all in the HEELS, Ladies

I don’t know what it is about putting on a pair of heels, but it sure does make a whole other statement!!

I say all women no matter what their age should take the advice from Janie in Glamour magazines November issue…“Dress everything up. Even if you’re wearing jeans, slip into heels. They change your stature and accentuate your derriere.” -Janie Bryant

Not only is it a Stature Statement that says Strong and Confident, but our bust size looks bigger & Uplifted and as Janie says, slipping on a pair of Heels accentuates our derriere! Now if you ask me this can only be a Positive! So come on girls, Dress it Up!! Who knew it could be so easy to create a Stronger more Confident statement. Lets put a lift in our walk and some stature in our Stance…Ladies, its all in the HEELS! Now grab a Pair and Lets GO!!