The day my life changed Forever (but I think it is for the BETTER)

I was 21, and went into the hospital on May 2nd 1991 for ten days of diagnostic testing. That was NOT the “Exact” diagnosis date, but it was the date that changed my life FOREVER.

I was never able to go back to work again. I worked as an Independant hairdresser (booth renting my own space). My MS just got worse for 4 months after my diagnosis, until I couldn’t feel anything from the neck down or even hold a tissue to blow my nose. But entering the hospital May 2nd 1991 will ALWAYS stick out in my head!!! Even though I had many other HUGE dates in my “MS Experience”, including having to cancel a wedding and being told that I “would never be able to walk again”. And that was suppose to be “what we could hope for” if the chemo (Cytoxin) worked with a 20% success rate.

I DIDN’T like that answer and was determined to prove them wrong. I did TONS of visualization while in the hospital receiving my treatments. I ended up walking Out of the hospital.

I don’t look like I have MS today, just deal with LOTS of non-visible symptoms, SEVERE Pain, MAJOR cognitive problems and EXTREME Fatigue.

So I had to postpone a wedding, but the BEST man in the world stood by my side. He actually made it romantic and “Fed me” when I Couldn’t feed myself. And still decided to marry me after I gained TONS of weight from having to be on All of the I.V. Steroids the 1st year I was diagnosed. And also after being with me and seeing me when I had lost ALL of my hair due to the chemo.

We have NOW been married for over 20 years. He took his marriage vows serious LONG before we EVER Got married and stuck right by my side.

I strongly believe that a POSITIVE attitude and a GREAT Support system really make ALL the difference n the world!!! My mom has Always (and still is) one of my BEST supports.

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Comments

View Comments (6)
  • Laura Kolaczkowski
    5 years ago

    You share such an important message – MS is unpredictable and we musn’t ever give up trying and hoping. I hope you continue to do well. ~Laura

  • Kim Imus Schaefer author
    5 years ago

    Thank you SO MUCH Laura for reminding that MS is TOTALLY different for everyone.

  • Copsmom
    5 years ago

    What an inspiration you are to me! Thanks so much for your post. I have been on Tyssabri for 37 months and have now tested positive for JCV so am having to change my DMD. Tyssabri gave me back my life! I was almost symptom free with it. Had the worst flare of my life in mid-November and ater 5 days of IV Steroids am still basically in a wheelchair with no DMD drugs since Oct. I am scared to death that I will never improve again. YOU HAVE GIVEN ME HOPE!! Thank you SO much for your inspirational story and a wonderful Christmas gift! And I wish you all the best in your life and that of your wonderful partner!

  • Kim Imus Schaefer author
    5 years ago

    I’m sure that right now things seem rather “bleak”? But remember that holidays are also EXTREMELY taxing on people (especially if you have MS if you and are dealing with fatigue anyway). Let alone people that have to deal with ANY depression. *my WONDERFUL, husband is bipolar, so the holidays can be Really tough*
    Anyway..LOL…Don’t ever,ever,ever, give up hope!!!!!! I am just SOOOOOO AMAZED that in the 21 years that I have had MS that there now (I think) 8 medications out to help control MS exacerbations. Including 2 orals. The ONLY thing they used to use was “IN-PATIENT” I.V. Steroids for 7 days twice a day. Oh I forgot, besides the Rx’s on the market there is also stem cell transplantation (a bit risky though cuz 1st it’s NOT approved 2nd they have to basically wipeout your entire immune system to make it be successful.
    So, hang in there.
    Let your MIND do lots of visualization. See what you want and where you want to be. That doesn’t mean it will make your MS go away, but it CERTAINLY WILL Help you get closer to where you Want to be!! (Just you would NEVER tell a child they were “stupid”, -because subconsciously they could start to believe they were stupid.
    That’s why hypnosis works so well. And dreams can seem SO real.
    The Subconscious-mind does NOT know the difference between what is Real and what is Not.
    It’s like I always have said “accept the diagnosis, but you can deny the prognosis”

  • Laura Kolaczkowski
    5 years ago

    Copsmom,
    The washout period for Tysabri can be such a treacherous time as you have found out the hard way. The extreme relapse is not uncommon after stopping Tysabri, but it is important for the drug to clear your system before starting on another one. The time is just about up for your washout and I hope you and your neurologist have already picked which other drug you will start. ~Laura

  • Lexine Darden
    5 years ago

    I loved reading your story. Your positivity is a wonderful example of what our mindpower can accomplish. It’s inspiring!

    Thanks for sharing,
    Lexine

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