Tuesday, November 29, 2016

11/29/16 - #givingTuesday

Today is #givingTuesday.  If you are able to donate, please consider giving to the National Multiple Sclerosis Society, for me.

I was diagnosed with Multiple Sclerosis (MS) December 2013.  I had had the symptoms for years before, but attributed them to Fibromyalgia (which I've had for years).  What brought MS to my attention was a young lady that I worked for at Delaware Seashore State Park.  She was concerned enough to ask me my symptoms.  I ticked off all the things wrong with me and then she hit me with a big question.  "Have you been tested for MS?"  I, of course, told her no.  She said my symptoms were very similar to her mother's who had had MS for a long time, she was even in a wheelchair. 

My cousin, Ray, had MS and had passed away when he was around 45.  He was around my age and I remember when his symptoms were visible and he used crutches.  He then went to a wheelchair and then eventually he was bedridden.

I was very scared that this could be true.  I made an appointment with my family doctor and she did some cognitive test and also strength test on me.  I think I was in a flare at the time because my stability was bad, my vision was blurred and the pain was unceasing.  The thing about having invisible diseases like MS and Fibromyalgia, they are hard to detect to the normal eye.  She ordered a Magnetic resonance imaging (MRI) of my brain and I scheduled an appointment at my first neurologist.  He was unsure if it was MS and I lost faith in him so I scheduled an appointment at my next neurologist.  He confirmed I had MS and wanted me to start taking medication to slow down the progress and flares.  I didn't want to take no stinking needles so I just dropped the doctor's visits and muddled through.

A year or so later I had another MRI and went to see a new neurologist, my current one.  He confirmed I had dots (#igotdots) and started me on Copaxone.  I inject this medication 3 times a week.  I don't like to give myself needles but, hey, the drug is working.  I had a MRI in September and I don't have any new dots and I'm not in a flare.

Flare, or exacerbation is when my dots are active and I could get new dots.  Just because I'm not in a flare, doesn't mean the symptoms are gone.  I am in pain every. single. day!  My vision is blurred most of the time but, when I went to the ophthalmologist, my vision was perfect.  Go figure.  I'm exhausted every. single. day!  I do have a medication that will give me energy but, that doesn't last long.  That's why I try to write in the morning when my brain isn't so fuzzy.  My cognitive functions suck, my memory is bad and I can't form sentences most of the time.

Don't let anyone tell you MS doesn't hurt, if they do they are a liar.  As I sit her now my shoulders hurt, my legs hurt, especially my lower legs, my lower back hurts, my arms hurt...ad nauseam.  I have a pain management appointment today and I really wish she would prescribe marijuana.  I know some people have a problem with that, mostly people not in pain. 
MS

Pain wears your body out.
Pain wears you out mentally.
Pain will depress you.
Pain hurts relationships.
Pain limits you.
Pain sucks.

So on the bright side...there isn't one.  MS has no cure, hell they don't even know what causes it.  So my symptoms will progress, hopefully slowly.  I don't want to use canes or crutches and God forbid I end up in a wheelchair unable to help myself.

Does prayer work?  You tell me.  I have been praying for healing and to get rid of pain.  I know family and friends have been praying.

Matthew 18:20  For where two or three gather together as my followers, I am there among them.”

Matthew 7:7   “Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.

James 5:15  Such a prayer offered in faith will heal the sick, and the Lord will make you well. And if you have committed any sins, you will be forgiven.

Hope can be paralyzing.

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