Tuesday, May 29, 2012

New Shoes

By JennW Saturday, November 01, 2008

Twelve weeks ago I started losing my balance and could not wear my high-heeled shoes. This was a cause of great concern for me because ordinarily, I can run in high heels -- fast, really fast if I had to.  Then I started getting these awful muscel spasms.  I went to my doctor, who was quite concerned because I am a healthy person . . . I see this doctor once a year for annual check ups.  I presented in his office in tears, because I didn't know what was wrong with me and had nobody to help me.  I live alone.  I was terrified.  If I got sick, I did not think there was anyone who would take care of me. 

 

My doctor immediately sent me to a neurologist.  The Neurologist put me on Tianzidine and sent me for an MRI.  Meanwhile, I almost fall down crossing the street, I purchased a walking cane, the muscle spasms woke me up throughout the night and I continued to go to work exhausted and loopey from Tianzidine.  I have the MRI.  It took over an hour.  I lay perfectly still (easy to do on Tianzidine and since slight movement triggers a spasm -- you learn how to be still).  On a side note, I learned I'm not clostraphobic.  Ten days later, I'm told "your results are irregular, there's white matter on your spine, you'll need follow-up tests, brain MRI and Lumbar Puncture, you have probable MS."  What??!!???  No!  I'm healthy!  It's not in my family!  I have too many shoes!  I love shoes!  I don't have anybody to help me!  Who's going to take care of me? OMG!!!  I keep going to work.  (Side note:  A walking cane is an excellent tool for stopping elevator doors and pushing elevator buttons.) 

 

Eight weeks into this journey, follow-up tests revealed a diagnosis of RRMS.  Okay, it relaspes and remits???? Am I relapsing?  Okay, muscles spasms almost gone, only taking Tianzindine at bedtime -- no balance issues (although I feel like I'm wearing leg warmers and have tingling in my fingers).  Now am I remitting?  Neurologist puts me on Copaxone.  A shot a day for the rest of my life (or until there's a cure)???? A SHOT A DAY!!!!????  I hate needles!  Still going to work.  My boss stayed home because he had a science headache ((LOL)).

 

I go to get the Copaxone.  Pharmasist informs me meds costs $2100, need approval from insurance company.  Insurance company approves for 1 year.  I pay $51 for 90 day supply.  MRIs and diagnostics cost about $15 grand!!!  I paid $20 co-pay.  MY GOD!!! I have to work or the rest of my life to keep my insurance!  What does the uninsured do?

 

11 weeks in, TEVA sends nurse to the house to show me how to do the injections.  I do the auto injection.  Piece of cake . . . except it stings a little bit.  Just when I start to whine about it, it stops hurting.   I can do this . . . I have to do it. 

Lisa Emrich, Health Guide
11/ 1/08 2:21pm

Wow.  You can really walk in those?  I've never been a high-heel gal.

 

I'm sorry, but welcome to the club.  The MS club which nobody really wants to join.  But since you're here, welcome.

 

So glad to hear that your symptoms are subsiding.  Good.

 

Here are some injection tips and resources for prescription assistance (for those needing help.)  Copaxone takes about 6-8 months to build up in your system to full effectiveness.  

 

Congratulations on taking the first recommended treatment, reaching out to other folks with MS.  Welcome.

Merely Me, Health Guide
11/ 1/08 5:41pm

Your shoes are beautiful.  Your story is so pure and heartfelt....I feel as though I am going through this with you.  This is totally unfair and you should not have to be going through all this.  But yet here you are...and having to deal with this monster of a disease.  I am so sorry.

 

I have a shoe bag which hangs over my closet door with shoes I will probably never wear again but I just can't bear to get rid of any of them.  Tennis shoes are my mode of transportation now. 

 

I know...this is so very difficult and no words can truly suffice here.  There is a lot of support on this site and...I am so glad that you have chosen here...to reach out. 

 

You write beautifully. 

 

Know that I am very moved by your story.  If you want to vent or ask anything...please do.  We are all just an email away.

 

Nice to meet you.

11/ 1/08 9:21pm

Thank you so much for your kind words.  Don't give up your shoes.  I did tennis shoes at first, but realized I relied more on my cane -- I bought the one that folds up.  Then when the spasms slowed up, I WENT SHOPPING!  I bought MSF's .  . . no, not MS Flats . . . Mighty Sexy FlatsKiss  Check them out

Merely Me, Health Guide
11/ 1/08 9:24pm

LOL  MS flats....i love that.  you have inspired me to go out and buy some cute non-tennis shoes...shoes!

11/ 1/08 9:39pm

Do it!  Try Marshall's ... They even have lay-a-way.

9/ 8/11 8:54am

I just read your story and I cannot stop crying! I just turned 26 last week, and two days ago my Dr told me that I may have MS. This reminds me so much of myself because I LOVE heels and own well over 50 pairs. Now, due to severe back pain, I cannot wear them anymore or go to the gym. It's funny, how at first that was my BIG fear. No more stillettos and gaining weight! (It was assumed that I had a herniated disk and that it wasn't in my best interest to wear them anymore.) NOW, I find that I may be facing something far more serious. I also have a 6 year old son, and all I can think about is how I may never be the same, "fun" mom that I used to be... (The kind that runs and chases the kids from time to time) I'm praying that they are wrong and that I just have a pinched nerve or torn muscle. The severity of the pain and amount of time (1 year) that I have been dealing with this is scaring me though.

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By JennW— Last Modified: 04/25/12, First Published: 11/01/08