MS

Just Put on a Happy Face

Not to be negative but why is that many people think that multiple sclerosis is just an inconvenient thing? That forcing a happy face when things are crappy is a good thing, an expected thing – just go about life we all have our burdens to bare.

I suppose when in a good place it is not so off. Hope and positivity are dangling there like a brass ring at the carnival ride. But, when the disabling stuff is going full force it is hard not feel like an explanation is necessary, it is hard to stifle the urge to scream at someone’s ignorance, however well intentioned there thoughts are.

At least I have a name for what is messing me up. When someone accuses me of being drunk I suppose I have a retort now. It explains why sometimes one of my eyes stops working, why I can’t walk without falling over sometimes, why I have trouble sleeping, why walking through a book store calls for a nap, or when I can’t remember something at least I know why.

I am sure that everyone knows someone that has it and is doing “marvelous” so what is the big deal? Well, there are those of us not doing so great sometimes. It is a strange deal this MS, yah never know till you wake up what parts of your self are gonna work and which parts are not.

It is hard to identify with a self that has a disease that
No one knows what causes it
No one knows what cures it
No one knows what course it will take

Then there is the quality of life deal too . …should I stick myself with needle full of drugs that may or may not make me feel like doo doo and can damage my body once or three times a week OR should I stab myself (afraid major here of needles) once a day and have welts OR should I manage the painful stuff with other drugs and see where it goes OR should I just do what I have been doing – just plugging along pretending it is all OK.

Right now I have lost myself.
Re- invention is necessary
Resistance is futile

This SUCKS!!!

Symptoms of MS

When Sucks is an Honest Word

Sometimes stuff happens that leaves me at a loss for words.  Right now I am dumbfounded, stressed, etc. a few weeks ago my primary care physician sent me to the neurologist to go over my latest brain MRI that I had in April when the vision in my eye went wonky. She had told me that the MRI was the same as before, just a bit worse. Now mind you I have been under the assumption that my problems have all been the result of strokes. So, telling me it was the same as before just kind of meant to me – yeah more vascular problems, whats new.

Well, the neuro started off with all the wonderful things that could cause the little white lesions on the MRI. She mentioned MS, a few other things I don’t remember and lupus so she ordered a bunch of blood work – convinced she was onto something with the lupus thing.  She ordered an MRI of my spine because I have degenerative disk disease and my neck has been driving me nuts – ouch – and my legs have been going numb etc. and she wanted to see what was going on there.

I left the office with a nfity paper that states that I was to have the blood test done and “You do not have multiple sclerosis”, someone will call about cervical spine mri.

The blood work results came back (Kaiser lets you access them from the web) and I was going yippe woo hoo because they were negative for Lupus.  So, Friday I left for Nevada glad I did not have lupus or MS and hoping the MRI would show something in my neck that caused the syptoms I had because I guite honestly was getting real tired of hearing the we did not find anything, are you depressed – which means they think it is all in your head.

The next tuesday I got a call from the neurologist, eh oh I was thinking what is wrong, is my neck messed up that bad – I mean come on they don’t call you that fast or at all you usually have to wait till you see your PCP again to get the low down.

Now, as some of you know I have cognitive problems sometimes, when you wake me up and start jabbering on the phone I usually don’t catch most of it and end up asking can I call you back?

The neuro starts with that she has never had to take back … and appologize … well … there are some problems with your spine – serious problems – (now I am thinking eh oh I sure hope I dont need surgery like my buddy Mike had to have) and then here it comes … well .. like I said there are some really serious problems and well you have MS ….. BOING OH SNAP!

She started giving me numbers for some support groups etc and I just said eh you know I am like confused and overloaded could you just email it to me? and hung up.

At that point all I knew about MS was that it was a nervous system disease. Well after reading up on it I am still stuck on

MS SUCKS!!!!

i have only shared this with a few family members and friends and one online friend. I dont know how to react so it is not surprising that neither do they. My brother said oh isnt that degenrative? and by the way we are having Thanksgiving at our home and it is gonna be crowed, we got mom and dad a hotel room and figured you would spend it with Rae’s parents. EH? the first Thanksgiving that will not be held at my parents home since like forever! Since I was one years old with the exception of when we all went to the grandparents. And eh ok I am written out.

Then we have the oh you poor dear I will pray for you sometimes followed by a hug, the just give it the good fight I am sure if you fight hard enough responses,  and then the subject changers.  Oh well. After being asked wonder what you did you know bad karma wise and a few but you don’t look sick responses I stopped telling people.

One of my best friends, my significant other, and my online friend Karoli (Drumsnwhistles) are the only ones who did not respond with a canned get well soon response – they responded with

That SUCKS!

Yes it does LOL