My Journey with Multiple Sclerosis

In 2001 I thought my world was coming to an end.  I was in the middle of helping prepare for a big trial when I woke up one Monday morning and could not see out of my left eye. 

Instead of panicking I went into my office and finished up the exhibits we would be using.  I waited until after everything was complete to call my doctor.  In retrospect I should have informed my husband that morning what was going on, but not wanting to worry him I kept quiet.

My doctor had me go into the emergency room (and no I did not tell him I drove to work nor did I inform him I would be driving myself to the emergency room).  You see I was, and maybe still am, a very stubborn woman.  He had already let the emergency room know that I would be coming in and they were waiting for me. As soon as I was triaged in the emergency room doctor rushed me off to have a CT Scan and several other tests. 

At this time I still had no idea what they suspected.  When I talked to my doctor earlier that morning he had simply mentioned a detached retina. 

I became worried when the hospital I was at informed me that they were transferring me to a different hospital.  It was at this time he told me a brain tumor was suspected.  Somehow I managed to keep it together.  Someone from the hospital had already called my husband to inform him that I was in the emergency room and would be moving to a different hospital. 

So, not long after I had arrived at one hospital I was whisked away to another hospital. The emergency room doctor had informed me that there was a neurologist on staff at the other hospital that would be able to talk to me more in depth and confirm their suspicions.

The whole time I couldn’t help but think about their diagnosis.  I just didn’t believe that I had a brain tumor.  At the time I was working for a medical malpractice defense attorney and understood more of the medical jargon that I wanted to admit.  I just let them talk and I absorbed everything they were telling me.

I also knew that people were misdiagnosed than doctors liked to admit.  I had to keep telling myself not to panic until I had actually talked to a specialist.  Thankfully the hospital I was being transferred to was not far away, maybe fifteen minutes at the most. (Now, if the emergency room doctor would have been kind and let me drive myself there I am sure I could have been there a lot faster).

By the time I had arrived at the second hospital the neurologist had already reviewed my films.  (And thankfully we did have good technology back in 2001).  He brought me into his office and talked to me.  He had looked over the films and did not see a brain tumor.  (I was so grateful that I could have cried.)

Then he dropped the bombshell on me.  “Mrs. Theriot, the reason you have lost the vision in your left eye is something called optic neuritis.”

Now that was a medical term I had no familiarity with.  He informed me that it was a symptom of Multiple Sclerosis.  Again, this was another term I was not familiar with.  He, however, being the good doctor that he was already had several pamphlets for me to take home and review. 

Somehow I managed to keep myself together until I got into the car with my husband.  That is when the tears began to flow, and to be quite honest they flowed for several months.  By Christmas time we had the confirmed diagnosis and by then the MS was causing me quite a few problems. 

In a few months time I went from someone who is NEVER sick to someone that is hurting all the time.  I was getting ready to start my Rebif treatments when we found out I was pregnant with my youngest daughter. 

If anything good came out of my diagnosis with MS is that I was finally pregnant (my husband and I had several miscarriages over the last few years).  It took a team of doctors to make sure that my daughter was born and I am extremely grateful for each and everyone of them.

By the time my daughter was born I had decided that I was NOT going to let MS control my body.  I started the Rebif and started learning how to overcome each of the curve balls MS was throwing at me.

Over the years I have learned that you can teach an old dog new tricks, it just takes time.  Several years ago I was told that I would be in a wheelchair by now.  There are days that I most probably should, but at this time I am winning that battle.  Now don’t get my wrong, I will never run a marathon again.  I can’t even run across the street, I stumble more than walk but it is standing on my own two feet.  (Now if I could feel my feet that would be better.)

With each flareup the MS takes something else away from me, but I have learned to overcome each cursed side effect.  I have learned to eat only soft foods and take my time eating.  I can no longer hear out of my left ear and there is some days that even my hearing in the right ear is bad (this is an unusual symptom of MS but somehow I was one of the lucky ones to get it). In this day and age of technology it is okay that I cannot hear as well as I once could.  I have learned how to use text and email (even social media websites) to correspond with people.  Now, my daughter has taken full advantage of the loss of hearing.  If she has something to tell me that may get her in trouble she has been known to talk on my left side. 

This past year has been extremely difficult with MS.  It is no longer just flareups or exacerbation, but instead when a new symptom hits it stays forever.  My neurologist is talking about moving me from the relapsing remitting stage to progressive.  He just isn’t sure which progressive stage he wants to categorize me in.  I had already suspected that the MS was progressing so it didn’t shock me as much as the neurologist thought it would.  He has told me I am one of his only patients that he can honestly say if there is a chance it will happen, it will happen to me.  If there is a chance a prescription will give you a side effect, then you can guarantee I will be the patient that suffers from that side effect. 

I have learned that diagnosis of MS is NOT the end of the world.  It is a fight though and one that I will not stop fighting. 

With the progression of my MS this past year I have learned there is a lot that I can no longer do.  I will be honest and state that it was hard over coming the obstacles it threw in my path.  It may have taken me longer to overcome them this past year, but I am still fighting and will overcome each and every obstacle. 

The progression of my MS has kept me more home bound this year.  MS was making it a lot more difficult to enjoy any of my current hobbies.  I was an active volunteer at school and church but it was proving  to be too much for me.  My neurologist sat me down and told me that I was going to have to come to the realization I am unable to do some of the simple things I was doing over the past year. 

I loved helping with the fundraisers and it was hard to admit I couldn’t do it anymore.  Even simple things seem to zap all my energy.  Before my MS started progressing I knew I could count on a week of down time whenever I would volunteer for a function.  That was no longer the case.  There was no more downtime, if I let myself get worn out then I was in a world of trouble.  The symptoms would not let up, they just stayed with me. Sort of like a rash that just won’t go away.  Even steroids no longer helped. 

So over Christmas break I was talking to my daughter and she was asking what I did when I actually worked for a living.  (I know, she holds no punches when she speaks her mind.)  We were just talking and she let me see one of her short stories.  This past year her artistic side has really come out.  Not only does she like to draw, like her older brother, but she found a passion for writing.   Putting her hand on my shoulder, “You know Mom maybe you should write a book too.”

I soon realized that writing not only gave me something to do with my  free time, but I was actually enjoying doing it.  What started out as a simple story to show my family turned into a novel.  A few friends read it as well and told me I should look at getting it published. 

Years ago I had worked with some authors and publishers but wasn’t sure if I wanted to go that route.  For Christmas Resa had gotten a Kindle Fire.  We both fell in love with it.  I was noticing that several of the authors were strictly Kindle Self Publishers.  I decided to give it a try. 

Even if my name does not become a household name, I can honestly say that I am thoroughly enjoying this journey that MS has thrown into my life.  I am currently working on my fourth book to be published.  One is published, one is at waiting at to on copyright and the third for some reason I am procrastinating on sending to the copy-righter. 

For me writing has been a great therapy to help cope with my MS.  I’m under no time-line so if I’m not feeling well then I don’t write.  But it does give me something to do on all those nights that the pain is so bad I just can’t sleep.  When I am “in the zone” and writing up a storm it helps keep my mind off some of the pain tormenting my body.  The pain never completely goes away, but at least my mind is concentrating on something else. 

The reason behind this blog post is to let those suffering with MS or any other disease know that your life is not over.  Have faith and keep fighting.  There will be days that will be difficult, but don’t let the disease control your life.  I refuse to stop fighting. I will keep moving forward, although it may be a little slower than before.   

 

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