Category — Multiple Sclerosis

I sing it to the theme of “my buddy & me”…no I don’t.

Something most know about me now and maybe some don’t. I was diagnosed with multiple sclerosis in December 2007, coming on to a year now and its still pretty new to me, still going through the hurdles

As you will find out quickly I am pretty cynical about it all and tend to poke fun at it, then get angry about it, then back to poking more fun.. about it too. You have to find the humor at some point and I try even when it’s all doom and gloom in my mind, another sign of MS as I am told - you basically could fart and they’d tell you it’s associated with MS.

It’s not that bad now as when it all came about, that was the scariest time thus far though I am sure I am headed for some fun adventures in the future..

The worst was when I thought I might not be able to walk again, which just didn’t seem possible but turned out I was diagnosed with transverse myelitis. It’s something that you can get from a number of things like lyme disease, lupus, OH and syphilis..where when my mom heard that while we were in the waiting room at the hospital she had to make the comment “no, no, eee no - my daughter no have the sexo”…yes to my embarrasment my mom just told most of the people in the emergency room that I didn’t have sex and and somehow they must be mistaken.

You have to love her. really you do or she’ll turn on you.

Transverse myelitis is a neurological disorder caused by an inflammatory process of the grey and white matter of the spinal cord, and can cause axonal demyelination. Prognosis for complete recovery is generally poor. Recovery from transverse myelitis usually begins between weeks 2 and 12 following onset and may continue for up to 2 years in some patients, many of whom are left with considerable disabilities. Some patients show no signs of recovery whatsoever. However, if treated early, some patients experience complete or near complete recovery.

If it wasn’t bad enough that I could pronounce the damn thing or spell it I didn’t even understand what was happening. All I knew was I woke up one friday morning and went to work right before heading home I had this numbness. It was from the waist down and a day after shoveling snow so all I could think of was my waistband on my jeans were just way too tight and was cutting the circulation off to my lower half. I mean that had to be the reason I just went home and tried to ignore it.

So I went to the first doctor - a walk in clinic where I was told I had frostnip, yes frostnip, not frostbite that’s more common in the polar areas but frostnip

Frostnip is the least severe form of frostbite but should not be taken lightly.

Trust me anything with frost in the name, I wasn’t going to take lightly..So there I was thinking great, I am going to lose my legs to gangrene, a word used in my household on a regular basis since I had a father who fought in World War II and would repeat war stories of the guys in germany that lost their limbs in the winter due to the gangrene. That’s all that came to mind and I kept cursing the snow and winter.

So I left the walk in and went to work, nervous and weirded out telling my boss what had happened that morning and how they told me to just wait and see and if in a week I didn’t feel better to call an internist. So that night at home consisted of me staring at my legs for any signs of black with the phone and 911 on speed dial..

A day went by and it was getting worse so I dismissed that diagnosis and went for another try, this time to an internist who laughed in my face after I uttered the words “frostnip”. She said I “would have had to be outside for hours, naked, shoveling the snow for me to even get a glimpse of frostnip on my body” so I thought great - that’s great so what is it then? “a pinched nerve” she says..OH a pinched nerve, of course! that’s curable right?

So a few tests, xrays and days later and I was walking around like edward scissorhands and trying my best to ignore the situation and thinking I can still go about my daily routine as if nothing was wrong. I sat on the stairs and went up one at a time like you would when you were a kid and just moved if I had too.

But then something happened, I woke up one morning and stepped on a needle but didn’t feel it (my mom sews and you will find sewing needles floating in your cereal if your not careful). The only way I knew was the blood coming from my foot and I freaked, I called mom - told her I am going to the hospital and then I drove myself (yeah I couldn’t feel my legs but you’d be surprised how you could actually still be able to made the necessary phone calls - my mom included who all this time was saying with her loving heavy colombian accent “jour too fat paola, jew have no circulationa anda that’s why you can’t feel jour legs!”

but now a days I pretty much go about my business, with all feeling and tend to forget throughout the course of the day until it’s time for that shot. I take a shot everyday, which freaked me out at first but they have this injection piece called the auto-ejector that I just load in a new needle and it does the injection for me so it’s nothing really. Just annoying.

I thought bringing this up in my blog would also help someone else who might have just been diagnosed or has been who can relate. I recently met a few people who were going through MS, some at the later stages which is scary to be honest and some newly diagnosed. It’s definitely something I would call the limbo disease. You basically just wait for something to happen. I think if anything and from what I have been told technology has advanced enough that people are being treated in a far better manner than before - even 20 years prior so I should be lucky enough to get it now (or so I am told)

I have had my issues with people’s comments though but I have always had a problem with opinions, especially when someone comes to you and you’ve shared your experience and they say “aww that isn’t bad, MS is no big deal, I know someone with MS and there fine”. Most of the time I know it stems from someone just being nice, you see I suffer from that “the too nice” syndrome as well so I can pick up on it quickly

I am not hear digging my grave, actually total opposite. I used to regret everything growing up all stemming from my catholic, straight off the boat parents ideals and their constant encouragement that if I go against anything they say or what god said I am without a doubt going straight to hell.

Now I try to regret less, and I am slowly trying not to regret having MS. At first I thought just one more thing to have to deal with or as the saying goes “MS” stands for MORE SHIT.

But who knows, maybe there is a reason, maybe there will be a cure in my lifetime.

But for now, I am hoping people become more aware of what MS is and I will do my best to share what I have learned, what I am about to learn and my experiences with it. If you have a story you would like to share please do so..I’m all ears