My introduction...

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New Member

Date Joined Jan 2011
Total Posts : 12
   Posted 1/7/2011 1:23 AM (GMT -6)   
Hi, I'm Diana. And at 17 I woke up one morning feeling like my left thigh was asleep . i figured I'd slept on it wrong and it was nothing, but it stayed for a week or so and then spread. It grew to be both my legs down to my toes and because it was so centralized down below I was taken to have my back checked for pinched nerves, etc. neurologist came last, but it seemed most appropriate when my balance started to go. Being a dancer that was really hard for me. I was a pretty serious ballerina, I had taken time off from my ballet school for a school show which in a way was fortunate, but even now that my MS has subsided (the symptoms disappeared by themselves in a period of about 4 months) I don't have the same balance as I did before and I no longer dance.
I was diagnosed a week and a half before I went off to college after having spent a summer balancing all these different doctors with my summer job as a camp counselor (difficult to run after 7 year olds when you can't feel your feet) and was taught by a Shared Solutions nurse how to inject my daily Copaxone in the first few days of school. It was certainly a daunting thing to face alone, but to be honest I went back to my dorm room and just dropped down onto my knees in thanks. Never in my life have i felt so, ironically, blessed. I cried with thanks when it dawned on me how genuinely lucky I was. The blessing of a newly symptom free life (I had just that week returned from a hiking outdoors trip with my college upon which I found my coordination returning) and an injection that for me was infinitely easier than i had anticipated just hit me like a freight train and I cried a lot of happy tears.
They haven't all been happy, of course. Since then I have been fortunate enough to live symptom free, and I cross my fingers for the rest of them but I confront more daily the... social? issues of MS. The fear, for one. How do you all deal with the not knowing? The not knowing what's to come? What progression of the disease you might have? I often find it difficult to just let go and enjoy each free day I have. And also the issue of sharing my story with others. My friends at school know some but not much about the disease I have. One has to explain why one has needles in one's room after all, but I don't want to worry them. I find myself occasionally hiding things from my parents because I know how much sleep my mother loses over whether or not I'm getting enough Vitamin D. And when it comes to boys? Relationships... As a, now 19 year old girl boys are occasionally on my mind, what is the protocol for sharing your condition? I hate to hide it, but at the same time, it can be a scary thing to dump on someone... and.. I can easily imagine the worst when I think of the reaction someone thinking about spending a life with me could have when the life I may lead in the future has the potential for... handicap?
I'm sorry this ended up being so long.
I really haven't... written this all down ever and when I say it outloud I find I minimize a lot to ease the fears of my listeners. Once I started this i just couldn't stop.
It's been a blessing to find you all here.

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 1/7/2011 9:14 AM (GMT -6)   
You are amazing and strong and very very inspirational!  I love that looked for the good when you could have wallowed in the scary/bad.  I am so so glad to hear that you are symptom free!  There is always a, albeit small, chance that you will stay that way.
One thing.  When you write your posts, if they are longish ones, could you please break them up into paragraphs so those of us with nystagmus and other vision issues can read them more easily?  Thank you!
I want to be like your mom and yell at you about that vitamin D3.  Haha.  Do make sure you keep up on that one and get 15 or 20 of sun each day.  I am old enough to be your mom, by the way.  Haha.
I am certainly not experienced with MS having it only for 4 years, but I have found that denial is actually a healthy place to be.  I just keep telling myself that I am not going to be signifantly disabled by this.  And then I deal with the changes if and when they come.  I don't mean be totally unrealistic but do remember that for most of us, changes and issues develop slowly and you can deal with them.
DO keep very active and healthy.  Keep hiking and dancing and exercising.  Try not do pull all nighters!!! Eat well.  No drinking until 21.  After that, in moderation. NO SMOKING. 
Who to tell is a hard one.  At first I wanted to tell everyone since it was all I could think about.  But now I don't think about it all of the time and I only tell those who need to know.  I would not tell a boy (prospective boyfriend/date) about it until you know and trust him.  You would hate to scare someone off before he gets to know you. 
I am very glad you feel better after telling your story.  There is a wonderful book out there called MS and  your feeilngs.  It was written by a therapist that actually has MS.  Allison Shadday.  It has a journal type format.  You might really enjoy it. 
Keep up the great work, Diana!

Regular Member

Date Joined Apr 2006
Total Posts : 389
   Posted 1/7/2011 5:42 PM (GMT -6)   
Hi there, and thanks for sharing such an amazing story.....sure made my day.  Im a 56 year old day that has 3 daughters, and of course love and protect them with everything that I have.  I too have MS, and I pray every night that my kids are not touched with this disease.
My neurologist told me that the biggest and best thing that you could ever do, is stay positive.  The mind is such a powerful tool, and with positive thoughts will help you along with your journey.  From what I read, it appears that you have a great handle on this already.
You ask how one deals with the unknown - u have all your life, as we all do. We never really know what is around the next corner, whether you have MS or not.  You do need to plan for the future, because as far as I am concerned the future is yours, and is going to be as bright and as exciting as you want it to be.  At the same time, live the moment - live dance laugh, and do every thing that your heart desires....again we should all be doing this..  Just remember too, for some people with MS they have to find another route to get to where they are wanting to go, but the imprortant thing is that they can still get there!
Boys boys boys.....remember this is coming from a father of 3 daughters, and it does not matter if you are 9, 19, 29 etc...the love and the worry just never goes away, it just changes with time.  I know what your mother is going through, although I never have experienced a situation as such as a parent, but I do feel her heart, and yours too. Be patient with her, she loves u very much, and wants the best for u - so take your vit D3....ha...
Oh yes back to boys.....some may take the news well, and others maybe not....but that is life. Some guys like tall girls, some guys like short girls, is really hard to know from our view if you should tell or not, it will really depend on your feelings for this person.  But relationships are built on honesty and trust. I am going to tell you something. He is out there, in fact he is out there right now looking for you.  He might not know who you are, or who he is, but he is at this very moment looking for you.  He will find u, or you find him, and when this happens, the rainbow is going to be shining brighter then it ever has before, and it will not matter if you have MS or not.....we truly do fall in love with one's heart......
You take care, keep smiling, and keep doing what you are doing - and u are going to be OK.....

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 1/7/2011 7:50 PM (GMT -6)   
Oh Gary!
Great post!  You are such a romantic.  Thanks for this.
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