Sunday, July 22, 2012

Heathers journey Part Deux

April 1. 2010....April Fools!!!  Some joke played on me.  I was mad, angry, scared, confused

 


What was going to happen to me?  . 

I barely told anyone.  i felt ashamed...i was afraid...how would people look at me or treat me,,,i dont want to be treated differently...i dont want anyone to know.  what do i do? 


the few that knew did a whole bunch or research for me.  when i was ready to see it, it was available.  i was in denial.  i figured if i didnt accept it..if i didnt acknowlege it..it wasnt real.  But then i think to myself...i cant see right now due to ON.  kinda hard to hide that.  Especially when i would be out of work for a week doing IV Steroids.



I finally got the courage to look online.  BIG MISTAKE.  Online is great...but i was not told of great organizations like Nancy Davis, or the MSAA or NMSS sites.  thats a lie..i was told by my nurse but i wasnt really listening.  sites i visited said i was going to have a very short life and it would be a tough life. i wish i had listened to my nurse during MS education...all i heard is there is no cure and i would have to give mysel shots for the rest of my life, or until a cure of new therapies were formed.

not these shots                                         

     














these


I really got engaged with the Facebook world and found the NMSS site.  From there i was invited into a smaller group where a handful of us networked with each other.  This group was my support system my outlet.  In this group i found my now Best Friend. 




later that year i had some lesions appear on my spine reqired me to use a cane to walk.  my balance was shot.  i could barely lift my legs to put socks on.

i had issues driving as well.  THIS WAS WRONG OF ME AND I THANK GOD NO ONE WAS HURT for my stupidity.  but I still drove and to break i would have to lift my leg to the break pedal
and use both feet to apply the break to stop

my MRI indicated my lesions had doubled in the past 4 monts and i had some permanent damage on my brain,  was this new cane a permanant extention....i had a very hard time with this..i went from being athletic...never sick in 36 yrs to now walking with a cane...steroids were called again


I cant stress enough how important it is to have a support system on your side.  I had family...but the person who was really there for me was my best friend Sharon.  Like she always says....MS doesnt define who you are.  you have MS but it doesnt have you.  Dont give in or give up...ADAPT

I have carried and apply that every day of my life.  those words have helped me break out of my "feel sorry for me" shell...stand up and ADAPT!!!  I am in charge of my life.  MS is something i have and not who i am.

after steroids and physical therapy i was able to retire my cane...i do pull it out here and there and when i do, i am not embarrassed by it anymore. 

Why should i feel embarassed...I DID NOT CAUSE THIS!!!! 

Sharon helped me see that. 

THANK YOU MY DEAR BEST FRIEND


I quit feeling sorry for myself and quit worrying about what other people would think.  I began talking about my disease and helping others that were newly diagnosed.  I dont want people to feel scared like i was.

And now...i want to do more.  I DONT WANT ANYONE ELSE to have to go through this and those that are already diagnosed, i want a CURE for them,  I want a cure for ALL OF YOU.

I have to admit.  A Blessing did come from all of this. Something that would never of happened, had it not been for MS.  Sharon an I live 1100 miles apart.  We would have never met had it not been for our mutual diagnosis.  I am thankful for every day.  I hope and wish for you all to have a Best Friend as wonderful as her.

In fact this past April we celebrated our Friendship by getting a MS Awareness Tattoo.  tattoo's aren't for everyone..but it is what WE wanted to do.


                    my tat



  
   
  
            sharon's tat




3 comments:

  1. Awesome blog. I have had MS for 16yrs and went from RRMS to SPMS 10yrs after diagnoses at age 30 and had to stop work at 32 and was on Avonex for about 12yrs and took IV steroids for 2yrs which lead to bone loss. 2010 I stopped driving by October due to hot Summer and rapid decline. Now for last 3 1/2 months been in a rehab center. Keep fighting a cure is in sight. I follow you on twitter under @chucksMS or Chuck is back my profile name. Also on Facebook. Sincerely, Chuck ..peace and hugs!

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  2. Thank you Chuck. So happy to hear you follow our group. Stay in great spirits and fight the good fight. Peace and hugs to you too!!!!

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  3. your sounds alot like mine, i am 37 diagnosed with Mar 2012, since then i have lost my bladder.. lol i self cath 3-4 times per day, i am losing my husband of almost 8 years, i was getting ready to go back to school and now i dont know what i'm doing or who i am.. i have great friends and a few supportive family members but how do you make that 1st step, ya know.. i have always been so strong and proud and i know i'm still there, i just feel so lost, and i am seeing a therapist but she doesnt get it.. any advice : )

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