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12/13/11

Dec 15, 2011 - 2 comments

Amazing how a day can change how you look at everything - at 5:15 am I woke up did all my usual things and by 5:15 pm I was a changed person - I was now a person with MS.  My emotions are all over the place as I imagine most people who get a dx of any disease are,  The thoughts are everywhere - and since my biggest sx is my inability to walk - severe foot drop - all I can think of is how much longer will I be able to get around,  I am starting Physical therapy so hopefully that will help.  

Decisions need to be made on DMD's and I don't have a clue which one to choose.  Giving myself shots is just not that appealing but as there is no one else to do it - I will.  

Haven't told anyone really about it a few friends - haven't told any family yet,  Since I have visible sx - my walking - I want to have one more holiday as me with a foot problem rather than me with MS.  Then I will tell people -  my parents are going to be the hardest people to tell.  Their first reaction will be to move to North Carolina where they are so they can take care of me.  My first reaction is to try and stay as independent as possible!  

So Today I truly begin my journey as a person with MS.  Yesterday was just a blur - my brain still hasn't fully comprehended this whole thing and since I was off work yesterday -I didn't even think about it or at least tried not to.  So today is the first day of this new life I have been given  not sure where it will lead me but guess I have to go along for the ride.  



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by Sumanadevii, Dec 15, 2011
Jacksmom, my heart goes out to you.  It is an overwhelming task when finally given the dx.  We are, on one hand, relieved to know the name of the monster but, on the other hand, frightened of the unknown.  There is no schedule of how MS  will go for us...how rough or easy the ride may be.  Don't we wish we knew!!!!  or...maybe we don't!!!!  Back and forth our thoughts rush.

I was where you were when dxed.  In a wheelchair most of my day.  I pushed myself to keep walking and today can still go about thirty feet.  I remember my doctor giving options.  We decided on Rebif.  She felt like it was the stronger of the DMD's given by shot.  I struggled the first year trying to keep relapses at bay until I could no longer handle the monthly steroids (taken by IV) three or four days every three or four weeks..depending on how my body was responding.

I am on Tysabri now.  I am due for my fifth infusion Monday.   Given how long I waited for a dx combined with the form of MS we now know I have, I would have started on Tysabri if my insurance would have covered it.  We didn't try so I will never know if it would have been approved.  I do know, today my body does not feel I am on verge of a relapse and life is looking better.

Keep journaling and posting here.  It is so healthy to have a sounding board.

Strength to you, my MS friend.

Avatar universal
by drsdonthelp, Dec 15, 2011
Hi Jacksmom!!! This is the year for us to put the waiting behind us and move forward with a new dx and finally the treatment we need to heal, and or at least stay stable enough to live to the fullest. (Sorry sometimes I ramble when I can't find the right words) anyway, I am sorry for your dx, yet am happy at the same time for you to finally have an answer. It's a bittersweet moment, no, you don't want ms, but now you have a name for all that you have been feeling and its easier to explain....

Good luck with your treatment, you are strong and you will get through it all, we are here for you!!!

Hugs,
Pam :)

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