Multiple Sclerosis & Me

it’s always interesting to me to see people’s reactions to their learning that i have MS.  sooooooo many people ask me what’s wrong regardless of where i am when they see me walking with the cane.  i’ve mentioned before that the usual question is “what happened to your foot?” and my standard answer is, “nothing happened to my foot, i have Multiple Sclerosis”  i’ve stopped saying MS because i don’t know just how many people know what MS is.

• right off the bat however, i can tell whether or not the person even knows what ” Multiple Sclerosis” is – they just kinda nod their heads and keep it moving.  no reaction (not that i need one), no additional comments, nothing.  it almost looks like they were embarrassed that they asked.  
• then there are those who say things like, “oh i’m so sorry to hear that” and we may engage in some small talk about “life throwing u curveballs and u jes hadda deal”

• lol…there was this old man 1 time, after i told him what was wrong, he said something that to this day i have no idea what it was.  i’m not convinced that even  he knew because he kind had the “deer in the headlights” look as he was saying it…but then he said, “well at least you’re out and about here doing your thing” and i smiled and said, “i sure am”.

it’s always interesting to me to see people’s reactions to their learning that i have MS.  sooooooo many people ask me what’s wrong regardless of where i am when they see me walking with the cane.  i’ve mentioned before that the usual question is “what happened to your foot?” and my standard answer is, “nothing happened to my foot, i have Multiple Sclerosis”  i’ve stopped saying MS because i don’t know just how many people know what MS is.

• right off the bat however, i can tell whether or not the person even knows what ” Multiple Sclerosis” is – they just kinda nod their heads and keep it moving.  no reaction (not that i need one), no additional comments, nothing.  it almost looks like they were embarrassed that they asked.  
• then there are those who say things like, “oh i’m so sorry to hear that” and we may engage in some small talk about “life throwing u curveballs and u jes hadda deal”

• lol…there was this old man 1 time, after i told him what was wrong, he said something that to this day i have no idea what it was.  i’m not convinced that even  he knew because he kind had the “deer in the headlights” look as he was saying it…but then he said, “well at least you’re out and about here doing your thing” and i smiled and said, “i sure am”.

what a day!  it was the Wednesday after my last post.  so i’d tell allyuh that i wasn’t feeling good/things weren’t normal and i was struggling with whether i’d gotten worse or WHAT???  i’d been in touch with the MSCA so many days that week that i know they were tired of me.  anyhoo, so the thursday of the awful week, they told me that if things didn’t get better by Monday (9th), come in and see them.  well i was feeling better but i still wasn’t normal, so i made the appointment for 6/12 at 11am.

i didn’t want to drive myself so i asked S-dee to take me and off we went (i used my scooter).  I saw Beverly (my favorite nurse practitioner) to do something called a relapse evaluation.  as we were going thru the exam, she explained to me that one of the things that could happen is that if i contracted any kind of infection, my immune system will have kicked into overdrive to fight it and that exaggerates whatever MS symptoms might be plaguing us at the time.  infection?  i have no infection do I?  i didn’t think so…well wouldn’t you know it, I did.  really?  what??  is that what’s going on???  is it really that “simple”?  she decided to give me a 3day bout of steroids (to help with my MS related increased instability) and prescribed some antibiotics to fight the infection.  i heard 3 days and got concerned because the thought of having to go in there for the next 2 days (got the 1st one that day) – well that would be difficult.  turns out, they could send a nurse to me that thursday and friday for a home visit.  GREAT!! so at that point, only time would tell if that was really what was going on and i would get back to normal.

the exam over (and I, having some answers and hope), S-dee and i made our way back to the car to leave.  i got off the scooter,  she proceeded to dismantle it and put it in the car, i took 2 steps to get to the front door and went down and went down HARD!!!!  (it appears that i may have tripped on my pants that needed to be folded – fcuking a! Stacey)  Luckily i have some padding round the hips/ass area, so my right hip (i fell on my side) took the brunt of the fall, but i hit my head and it hurt.  in fact, when i sat up, i felt lil woozy and all i wanted to do was lay flat on that parking lot ground.  i guess it couldn’t have happened in a better place, so (after i was able to stand up and move) we just made our way back upstairs and this time i saw a doctor from the internal medicine department.  he gave me a through exam (in fact at some point, i said to myself, “instead of asking me all these damn questions, you can just look in my chart and find all the answers. of course good thing he WAS asking me those kinda questions) and when he was satisfied that i was lucid and ok, he told me that i probably had a slight concussion.  he sent me on my way but also told me that if ANYTHING were to change, call them back or go straight to an ER etc…of course, my original plan was to go back to work after the MSCA but that was thrown out the window as soon as i fell so i went home and just took it easy for the rest of the day.

the time between then and now I’ve been getting better and feeling more and more like Stax vs. who the hell is this person and where did she come from.  i would venture out (now and again) but i have to admit that i was not as sure of myself as in the past and it was almost like i didn’t trust my body/myself a whole lot…i believe that i’m back to normal now though because i went out yesterday and things were fine, so i guess it really was that “simple” and all i had to do was get rid of the infection so that things could go back to normal.  i still have some (very slight) positional vertigo only when i get in and out of bed but i’m sure that too will get better with time….

oh geez…i’m not sure what is going on.  Am i one of the “lucky” ones who really fall victim to the Tysabri rebound effect???

so i’ve had a rough week.  the first time that i noticed that “things weren’t right was Monday.  I had a dentist appointment and for whatever reason, i WAS SO VERY STIFF.  i was still moving on my own but things were just not normal.  at one point, the hygienist even asked me if i was getting worse because 3 people from the office were trying to help me out.  at some point, they told me to just sit on an office chair and they wheeled me where i need to go.  by the time i got home, i was feeling a little better but…

Tuesday after work i just didn’t want to move from where i was.  My trainer cancelled and when i found out, i just didn’t move for about 1 1/2 hrs and then it hit me.  i’ve mentioned here before (i think) that if i stay in the sun for too long (GASP!!), my limbs jes get rhell heavy and it’s a chore to do anything – well that’s how i’d been feeling for most of the day…problem was, there is no sun INSIDE!!!  oh no…what the hell is this???  i didn’t feel badly, i don’t feel sick but things just weren’t right.

• is it the rebound effect?
• is it a flare up?
• is it because i have no medication in my system?
• is the MS rearing its ugly head because i’m actually really frustrated and unhappy at work?
• oh no…am i getting worse???????

the Tecfidera is in the house…