Author: staxone@me.com

Before i continue, let me publicly thank Krista for her 2nd to none introduction of me that nite…i was appalled when it occurred to me later that week that i didn’t thank you on stage (gasp)!!

ok…so as i said before, the nite was a very good nite…we had good fun.

My mask was handmade by Sdee and i asked her to use orange to represent the MS and all the feathers are on the right side – my stronger side – to balance out the weak side most impacted by the MS.  I’ve posted a few pictures below but see the full write up and all pictures here on Trini Jungle Juice.

wow!!  it’s been a long long time…

November was one helluva hectic month.  OB arrived first, 2 weeks later Learls and her 3 sisters came in (can we say full house?), the masquerade ball happened, thanksgiving and then 1 by 1 the visitors started leaving – with OB and Learlyn leaving bright and early yesterday am.  i had no time off and worked right thru and just had no time to write…thru all of this the MS behaved itself – thank God!

i’m in search of a personal trainer – ugh!  my last trainer got a job in NY and moved back – i was not a happy camper but what could i do?  of course, chances are that i won’t be able to find a trainer who will charge the same rate that i’d been paying so woe is me.  I really need a trainer, as we all know, so i’m on the hunt.

The masquerade ball came off without a hitch – was a very nice event and well attended too.  My mask was hand made and i asked Sdee to use orange to incorporate the MS colour.    i made my speech and actually felt good throughout the whole thing so i didn’t rush (i tend to do that sometimes), i came off very confident and apparently alot of people liked it.  All in all was a good nite – some people got tite so that’s a sure sign of a good nite 🙂

I can’t post more pictures, because i haven’t been sent any yet and i only had these 2 on my phone.

anyhoo, this is it for now…be back tomorrow for a few more updates from last month.

so Learls called me last nite and told me that she got a very “angry vibe” from me in my last post and that i should stop cussin the MS.  Truth be told, I was just telling the story and didn’t mean to give off that vibe at all.  I told her that i might have been a little frustrated at the time but definitely not angry and then i thought about it…come to think bout it, at the time i wasn’t even frustrated.  In fact, i can think of alot of other times when i was angry or frustrated or even got depressed but this certainly wasn’t one of them.

She acknowledged the fact that i can be angry at it, angry at the fact that i have it but at the same time i should remember that we really have nothing (not too much) to complain about.  it’s true – i really don’t. 

• Am I grateful for MS?  hell no! I’ve heard stories of people who are glad that they have it because it made them pause, take stock of their lives, if u will and they are grateful for that.  Am i one of those?  No sirree Bob!
• Do i wish that i didn’t have it?  But of course!  the pills, the monthly infusions, falling all over the place, being worried about falling all over the place, the uncertainty and i can go on…
• Is it the absolute worst thing that has happened to me?  that is still out for discussion
• is my case the worst?  NO!
• is my case really bad?  No – it’s bad (in my book) but it’s not really bad
• Should i be thankful for what i have to deal with?  Yes

so…was i angry last week Saturday?  not at all.  is it okay to cuss the MS?  yes…but not all the time or too too often; karma is in fact a bitch!  Saturday was just another ordinary day in the life of Stacey with MS; I was just telling my tale.  I was just going back to the title of the blog: 

  

I mentioned a challenge i signed up for and FAILED – a post a day for the month of April.  well i’m cheating a little now – I’m using one of their topics to create today’s post…so here goes.  My list of 10 things I can’t live without (in no particular order)…

1. My support groups – the inner circle and the not so inner circle, my family and friends – without them – woe woe woe would be me, i can’t even begin to think of what i would do without them. 
2. ALCOHOL – i’m no alcoholic in fact i like to think of myself as an alcohol lover – to steal a phrase from someone – an alcohol “connoisseur” if you will…but let me tell u, this shit would be so much harder to deal with if i couldn’t indulge from time to time
3. My (AM/PM) pill boxes – I actually just had to order another set of 7 – i always know when i have a good time somewhere because for whatever reason, i come back with fewer than i left with (right now I’m recycling 3!)!  I would not be able to keep up with the pills i need to take daily AND at specific times without them.
4. speaking of which…the daily pill alarms – what?  U think that because i’ve been taking them EVERY DAY at the same time that i would remember to actually take them?  NOT!
5. My canes – God forbid i didn’t have those things
6. My handy dandy handicap decal – nuff said!
7. Shoes with a small heel – i just don’t understand why  the hardest thing that i ever have to do at any given time is walk barefoot OR walk in a flat shoe; it can be quite depressing (not being able to walk barefoot, that is)
8. A walk-in shower – i was never a bath person but i do remember that when i moved in here, i was a tad bit disappointed that i didn’t have a bath tub.  HAH!!  these days i am so, so, so glad that i don’t have to deal with stepping over the edge of the bathtub to bathe…ugh!  it would take me so much longer every day just to get ready
9. My ability to work from home – ugh!  going into an office every single day would just be so difficult for me – i shudder to think
10. My cellphone – it doesn’t grow out of my ear like some people, but i really need to have it with me at all times.  Think about it, when i find myself in those funny situations, i won’t be able to pick up the phone and call someone for us to both laugh at myself or be talked “off the ledge” 

There you have it (and i’m sure i can keep going) but…i’m not sure how i would go on without the items on this list, some of course, are just a wee bit more important than others 🙂

went for my infusion on Tuesday…I had to be stuck 4 times! it brought back memories for all of us in the room…
Truthfully, i havent been drinking water like i normally do/should be for the past few weeks, i knew that things might have been tricky.  in fact, it wasn’t until Monday nite, i said to myself, “shit, i have an infusion tomorrow – i should have been drinking water for the past week!”  there was a new nurse there too and the older heads let her come to me (poor thing); she didn’t stand a chance in hell – she kept apologizing and eventually gave up after the 2nd time.

I also had a follow up appt. with my neurologist.  good news – there is no additional scarring/signs of PML on the last MRI so things are stable.  Unfortunately, Stacey being Stacey took advantage of the fact that i was off the entire day, so i went to the barber and made another doctor’s appt that morning so by the time i got in to see him, i wasn’t in good shape.  I wasn’t the worst i can be, but i was bad enuf that he was concerned.  i told him that by the time my infusion was done, i’d be ok…and of course i was.

On a side note, he opened the exam room door and exclaimed, “oh!  what did u do with your hair?” (remember i’d just come from the barber so it was fresh)  well i still havent answered him because i was in so much shock.  First, he’s a man and secondly, he’s my doctor who i don’t see that often (granted he’s seen me with my mohawk already but still) – i couldn’t believe it!!!  LOL

oh…P.S – i’m up to 8 falls now.