Category: Random Thoughts

My "Condition"

i hate when people automatically assume that because i say i can’t do something or I won’t that it’s because “of your condition”.  i was talking to my aunt last nite and we were talking about long distance driving.  I said that the only place i drive to is Charlotte because it’s only 3 1/2 hrs away and even that is a stretch.  she said, “yes yes…in ur condition blah blah blah”.  she’s not the first one with whom I’ve had this exact conversation to say this.  The other person kept insisting that i shouldn’t do it blah blah blah…the truth is that i don’t drive anywhere because i can’t stand to sit in a car for that length of time!  I too old for that shit!!  back in the day, we would jump in a car and drive to NY and Miami at the drop of a hat….u cyah pay me enuf to do that crap NO MORE…everywhere i go, i fly!

Now don’t get me wrong.  I know that there are some things that i shouldn’t/wouldn’t do “in my condition” – u won’t hear of me signing up for a 10K anytime soon – but i know what those are and i know my limitations.  There was a time ago when i said “to hell with it; I’m doing it” but those days are long gone.  My “superhero” days are over!

To Tell or NOT To Tell…

I’ve said before that i really believe that my MS is temperamental.  I swear!  If I’m at home alone or around people i’m comfortable with – no problems (for the most part)…as soon as i’m out and about, around strangers – all hell breaks loose!  I stiffen up, i’m all shaky, unstable…ayeyayaye!  shit is never nice and simple…

Monday nite, I went to dinner…wobbled into the restaurant and as always, I feel like i have to explain when I’m following the host to a table (esp if I’m by myself) becuz i move so slowly, i tell the guy, I’m going to get there; it’ll take me a minute, but i’ll get there.  Of course, he sees me somewhat shaky and asks if I’m okay.  Anytime I’m asked that question, I say yes…no need to get into any long story.  But then he says, looks like there’s something wrong, did u hurt ur leg?  Crap!  did he have to ask more questions?  really?  This is a place that I frequent – ALOT – so I felt the need to tell him the truth, “i have MS so sometimes i stiffen up when I walk”…poor guy.  I think he got confused,  mumbled under his breath “so sorry” and got the hell out of dodge. 

It’s not that i want to make anyone uncomfortable or anything, but he asked me more questions – he should have just accepted my first answer and moved the hell on.

Last nite, I went to a friends’ house and ran into someone i know who hasn’t seen me in a while (we don’t keep in touch either).  I went into the office yesterday so i did more walking than i should have so by last nite, i was in a state….the conversations went like this:

him:  U limping…what’s up?  u okay?
me: wait a minute, u don’t know?  I have MS so sometimes walking is a problem
him: Nah!  Yuh lie!  i doh believe u…u joking

and he walked away…i heard later that he went to confirm with G and SD that i was telling the truth.  He honestly didn’t believe me.  Again, I don’t set out to make people feel uncomfortable or anything but sometimes they just don’t know how to react and sometimes the truth just isn’t necessary either.

#3

I’m a PRO at these infusions now.  #3 was last week Friday – everything went well; no worries, stress nothing.  I fell asleep while it was doing its thing and I even went out later that nite!  Of course, the head nurse (i’m a problem child, so she is the only one who takes care of me) still hasn’t figured my veins out…but this time i only had to get stuck twice as opposed to 3x the last time.  It’s amazing the places that they go into as well – i woulda never thought that i would actually entertain using the bony side of my wrist!

I still can’t say if the medication is working or even doing anything…but the good news is that nothing is getting worse and nothing new is happening.  I also confirmed without a doubt on this last visit that i am anaemic.  I would love to know how that happened all of a sudden and i can’t blame the Tysabri because my iron started getting low before i started on it.  I haven’t experienced any of the classic reasons for iron deficiency – major blood loss being the most significant – and there really isn’t any explanation for it, but hey!  i’m dealing with it and it’s not such a major issue to lose any sleep over.

:-) More Warm Fuzzies :-)

G has not been here for the past week and a half.  I have a weekly appointment that she normally drives me to because I’m not sure if I can drive home when i leave it yet.  So i had to find a driver yesterday.  I asked SD in the morning and he was able to do it.  I’ll be honest – i hated asking him because i think i’ve said before, i don’t like having to depend on nor do i want to be a bother to anyone.  I plan to drive home the next time I go so that I can get a feel for if I can go by myself in the future. 

Well i mentioned to SD and naturally i get bouff (chastised).  He told me to “don’t be stupid!”, “stop acting up!”, “u should depend on us just like we depend on u” and “stop being so sensitive!”.  I have to admit, it made me smile.  It DOES feel good to know that I have friends on whom i can depend at any given time and I am really not a bother.  I can’t help it tho – i really hate to have to ask anyone for favours because I like to be able to go where i want when i want but I know that in my situation, that cannot always be the case.  

It’s good to know that my friends are there for me IF/WHEN i need them and we’re all going thru this together.

Warm Fuzzies

It always gives me a “warm fuzzy” feeling when i am complimented on this blog.  Never in a million years would i have thought that:

  1. it would be easy
  2. i wouldn’t mind people reading – i was skeptical at first because i thought that it would need to be perfect – HAH!
  3. people would actually enjoy it

Someone asked me once if it will ever evolve into something else where i just talk about other shit going on and the answer is no! (kudos to those who do) I’m not that guy…so it won’t ever evolve into that altho i will say that i don’t always have something to talk about related to my MS story.

Some people have told me that it makes them laugh…and then in the same breath, they apologise (i guess for laughing).  But i always say to those folk, it’s okay to laugh.  Sometimes all I can do is laugh.  Laughter is  the best way for me to handle all the shit that happens sometimes – if I don’t laugh i will sit here and bawl down the place.  So it’s good to laugh – sometimes I laugh when i re-read some posts.  I know that they are not laughing at the fact that i have MS, it’s just how i’ve written the post and i want u to laugh NOT sit and feel sorry for me.

So read up, laugh – laugh hard (I do…sometimes i think i have the loudest laugh of anyone i know) and ENJOY!
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