My story in brief – more on the past, present, and future to come

Last year I walked in an MS walk for the first time and SHAME on me. Shame on me because I was diagnosed with MS approximately ten years ago now and this was the first time I ever done anything active about it. I would give a little bit of money through the United Way but I never did anything else. I often thought about doing something but there was always a reason not to.  Something else was going on; it was too much effort to put together a team; I didn’t want to bother my friends; I hate fund raising; I forgot; and any one of a long list of other mundane excuses.  The biggest reason, however, was that, inside, I was really scared.

When I was diagnosed, I was told by the neurologist that the type of MS I had at that time was relapsing remitting. That meant that I would have attacks, but I would recover fully between each attack. Since I had only shown sensory symptoms so far, and no motor involvement, I would likely continue this way.  And for a long while I did.  I had periods of numbness here or there, maybe some altered temperature sensation, but nothing that I considered more than a mere nuisance. I continued to work at my job as a paramedic without my coworkers being any the wiser. The worst thing that MS did to me until that point was almost keep me from adopting my
beautiful daughter, Ksenia, because of a Russian law which stated that people with certain types of MS were not allowed to adopt from their country.  Luckily, it turned out that I hadn’t been diagnosed with one of those forms.

After this brief scare that MS might actually have a real effect on me, I just went on with my life as normal. Deep inside, though, I always knew that there was a chance that it could all change in a minute and I just didn’t want to think about it. Hence, my previous lack of involvement with anything related to raising money or awareness for MS.  If I became involved I would have to interact with people who hadn’t been as lucky as I had and watch them deal with MS-related challenges and disabilities that I pushed from consciousness and always hoped to avoid. I was afraid that it would be like seeing into my future and, as I said earlier, I was scared.

Well, in the Spring of 2008, everything changed. I finished a shift at work, planning to return to duty in a week and a half. Little did I know that would be the last time I’d ever ride a paramedic unit.

I was off for a week’s vacation in Ocean City with my husband, Ed, and our two kids, Ksenia and Gabriel. The second day, I felt like I had to pull myself up the stairs in the condo.  I could tell that I was having trouble walking, though it took others a little longer to notice. My right leg became so weak and slow to respond that I no longer trusted myself to drive.  It finally got to the point that we went to the local emergency room.

That evening was the beginning of the hardest period of my life to date.  Of course it was assumed that the MS was causing the symptoms and with proper treatment they would go away as they had in the past.  That night, however, we also found out that I was pregnant with our precious little girl, Eliza.  So now instead of receiving the typical treatment, I was told that I could not be treated at all because of the pregnancy.  I deteriorated quickly.

I went from having difficulty holding my nine-month-old, to the inability to feed him due lack of arm strength and endurance.  I went from having trouble walking, to basically being an invalid, stuck on the couch, if there was no one there to help me. I needed someone to help pull me up off the couch and I didn’t even have the strength in my legs to lift my feet over the dividers on the floors between rooms. The only extremity I still had a fair amount of use of was my left arm. My mom drove a two-hour roundtrip every weekday for many months to take care of my son for me while I laid on the couch and couldn’t even hold him because I was afraid that my arm would give out at any time. One thing that still breaks my heart about that period is that I was unable to assist my daughter, Ksenia, is the search for her high school graduation dress.

I was lucky that early in my pregnancy I met with a specialist who convinced my neurologist that I could be treated.  After two rounds of treatment and one hospital stay I began to slowly improve with multiple setbacks along the way.  Eventually, we had a happy, healthy, baby girl, and I regained about 90% of my functionality. However, without 100% recovery, I could no longer perform my job as a paramedic. So, after fifteen years, at a job I loved, I was forced to retire on medical disability.

This is a road that is far from ending. While in California this summer, I relapsed. Though thankfully not nearly as severely as the earlier attack.  As I sit here and write this and watch my son twirl in circles, I still consider myself one of the lucky ones.  Now, however, I know that as one of the lucky ones I must do something to help with the fight to cure MS. My hope is to help secure a happy and positive future for myself, my family, and all of the others affected by this horrible disease.  My little ones need their mother and I would love to continue to be an active participant in my children’s lives.

Many strides have been made in MS research lately, including the release of a new drug for the treatment of leg weakness and many other hopeful experimental therapies not yet available to the general public. Without support and money from people like you and me, none of this would be possible. Because of our support the future holds much more hope for me, my family, and many other families like us.

I have started a team called Next Steps to walk in the Columbia 2010 5k MS Walk.  I am asking, hoping, and praying that you can find some way to become involved. You can join our team as a walker and sponsor, as just a walker, as just a sponsor, or as a volunteer at the event. Please go Next Steps’ site at Walk MS:2010 or to my personal page to sign up to do whatever you can to help.  Additionally if you have any friends, co-workers, fellow church members, corporate leaders, etc. who you think might like to join or support us, please pass this on to them.  We can use all the help we can get!!!

I would like to thank you ahead of time for any help you are able to give. Anyone who is available after the walk is invited to our house for a celebration of the impact we have made!

Sincerely, and with heartfelt thanks,

Debbie

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4 Comments

  1. May 21, 2010 at 5:18 pm

    […] May 21, 2010 at 4:38 pm (Family, History, Identity, MS Walk, Present) Tags: Family, fatigue, MS Walk, retirement, withdrawal This morning is the first time that I had looked at my blog in quite awhile. You could have colored me orange when I realized that it had been more than two and a half months since I had last updated you.  I feel like I should introduce myself again and direct any newcomers to the short version of my story up till now. […]

  2. May 23, 2010 at 9:54 pm

    […] knew much, if anything at all, about my diagnosis and current situation, so I sat down and wrote a letter.  I sent it out to all the people I knew whose email address I had handy and Ed did the […]

  3. Megan said,

    June 6, 2010 at 7:28 pm

    Hi Debbie

    I don’t know exactly how I stumbled onto your blog, but I’m so glad that I did. I was just diagnosed on April 21, 2010 and I’m so glad to “meet” other people who have gone through what I’m going through. It’s been a huge help. I’m going to follow your blog now.

    Megan

    • Debbie said,

      June 6, 2010 at 8:26 pm

      Megan, I’ll take a look at your blog. However please don’t ever hesitate to send me a message if you just have a question or want to talk. A new diagnosis is an incredibly scary thing and it always helps to have someone who knows where you are coming from. Take care,
      Debbie


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