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When There's More Than MS to Face

 

  by Charisse Farmer

 

As each day passes,
I'm almost surprised the next begins!

 

 Hello to everyone living with MS.

My name is Charisse Farmer. 
I'm 39 and was diagnosed in 2001. 
I have been blessed with two outstanding children – my oldest Alyssa is 16 and I know for a fact there have been days I would have never made it through if she had not been there.

 

She has grown up not only learning how to deal with a Mom having Multiple Sclerosis, but also my son –  her brother – who is 9 years old now. Prior to birth he suffered a "Grade III Brain Hemorrhage."  John also has Hydrocephalus (VP Shunt), a vision impairment, a cervical syrnix and rounding out his list are mild Cerebral Palsy and a displaced kidney.  He was delivered at 34 weeks, and at that time we were told he would never walk nor talk.

 

   SURPRISE! SURPRISE!  He talks and runs!    

I believe he was blessed and he has
many Angels watching over him!      

Sure, we went through a lot of adjusting –
learning so much more information
than any parent/family should.

 

He was born in February 1998, and in late 2000, I was at the ER because one half of my face, including half of my tongue went numb. This was that physical experience that happens and we think to ourselves, "Something's wrong!"  For me, this experience was like watching a intense thriller movie and the ending is going to finally give you  the answer – and you miss it! 
I had a CT scan that day in the ER. 
The ER physician came to explain    the results.

 

 Already knowing information about the brain due to my son's condition, I was ready to ask questions.  He said to me, "Your CT scan came back abnormal and what you need to do is make an appointment with this neurology group (hands me a card) as soon as possible."  I said, "I know enough about the brain." (explained my son's condition.)

So "What's abnormal?" I asked.     What I recall was an answer saying how each person's white matter of the brain MAY look different, but there seemed to be something the radiologist believed needed attention. I asked again, because that answer was not telling me anything!

 

I guess for some reason the emergency room physicians will only tell you,
"Yes. there is something wrong with you."
To find out any information you have to make an appointment, worry for however long, then find out some type of answer. I just have a good track record for these situations.  

 

I went through monitoring, tests, MRI's / CT's.  My neurologist went by steps with my diagnosis.

The first was "Possible MS" – then "Probable MS" – then a diagnosis of Multiple Sclerosis;  all the while putting me through many tests.
I knew where this was headed
(still no one can ever be prepared to hear your physician say those words that change lives)
before the doctor ended his statement. 

It was February 2001 when my neurologist uttered those words to me,

"Charisse, You have Multiple Sclerosis."  

 

At that time my son was on a full schedule of therapies.  John was nearly two and not fully walking and his vision impairment was also an issue, so physically I really began to feel fatigued.  With Dad working full time, Alyssa in school (she was just in elementary school) and other family members living 30 miles away, it was all up to me.

 

Everything really seemed to hit me!   I felt physically and mentally strained.   This new life was an adventure I did not want to be on.  Learning how to handle your own illness while realizing you have

another huge responsibility of another life is difficult.

 

 But, there is light at the end of the tunnel .  

The hardest thing to do is staying organized. My answer to that was purchasing basic book calenders.

(Helpful hint - Walgreens sells yearly by month black calendar books – 6x8 & purse-size).  Use one for shot record, another for appointments and keep one with you so when you go to the doctor you can look ahead to schedule your next appointment.

 

January 2006, I had a reaction to a three-day treatment of IV Scoundrel (Solumedrol). Basically, every side effect known, I had. This lasted nearly six months.   There are some issues that are permanent. One is Livedio Reticulitus, a skin condition – not topical – skin looks patchy and veins visible.

 

My days are still one at a time, but I try to enjoy each one. I am grateful I still have the ability to walk by myself.  My speech, well it is humorous at times because I have what I call "Porky-Pig-Syndrome". 

 I can't get the correct word out for what I am trying to say. My kids still tease me about the time I was telling my son, "John, go get in the bath."
I said, "John, go get in the toilette."    

 

I could go on and on sharing with you but I must end this. The main reason I decided to write was,

I know there are others out there dealing with many of the same issues and they are frustrated just like me.  Maybe this will others to share and say,
"You're not alone!"

 

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