Thursday, January 28

Living Well

I signed up to attend a wellness seminar being offered by the Multiple Sclerosis Society, Georgia Chapter titled, "Living a Healthy Life with Chronic Conditions".  It's a 6 week program that is not specifically for MS patients but geared toward teaching people with chronic diseases how to self manage their disease so that life just becomes easier all round.  Of course, since it's being offered by the MS Society, all the attendees actually do have MS.

It's the first time that I've ever been around other "people like me" and i have to say that i am enjoying it thoroughly.  It's a small "class" and so everyone's been very open and honest and even though i always knew that there are other people going thru the same thing that i'm going thru, being in these sessions has driven home the fact that I am not "alone".  Sharing stories etc, has also driven home the fact that MS is, I think, an incredible disease.  Whereas many of our syptoms are similar, the way our bodies react can be quite different!  It's actually been amazing to me and i have to think, it's no wonder there is no cure for it.  Scientists must be so confused about how it will affect 1 person to another.  One person told me last nite that she refers to MS as a designer disease; everyone has their own "one of a kind" story to tell.

I've been to 2 sessions so far and in each they've gone go thru different techniques that we can use to overcome what might be bothering us at any given point in time.  Last nite's class focused on Physical Activity and the pros of (u guessed it!) exercising.  We were given a book at the first session to use as a reference and in this book are different stregth building and stretching exercises that we can focus on to assist with our various weaknesses...I will be incorporating some of them into my exercise routine and hopefully i will see an improvement in the weakness i feel in my feet/legs.  More to come on this....

Saturday, January 23

MS in the News

Before i get into the story for this post, I've got to share.  I've fallen more times than i'd like to keep count; i think it's quite amazing.  I do remember when i was growing up, i used to say that i would fall on flat ground with shoes with the most grips and it was a joke, but who knew...anyhoo, so I was exercising last nite (yea!), doing yoga and i was in the middle of the Warrior 2 pose, when i thought that i should adjust my stance. 

I didn't think that i was doing it properly.  Well who tell me do that...i lost my balance and FELL FLAT ON MY ASS!!!!!  Again, no injuries - just a slightly bruised behind - but WTF?!?!?

Anyways, so onto my news...yesterday, the FDA approved a new drug! This drug is ORAL (WOOHOO) and is the first drug ever approved that specifically treats a symptom of MS - the symptom?  walking and gait problems! 

This is FANTASTIC news for patients like me who suffer thru this is actually my biggest complaint right now.  The other good news is that it can be used in conjunction with any treatment that we might be on right now.  As with any drug, there are side effects, but I'll be honest, the side effects are not the worst that I've seen/heard about (would u believe tho that in the clinical testing, some patients reported INCREASED falling?!?!?! - is that even possible with me?) and I have decided that i will definitely be talking to my doctor as soon as possible (it is scheduled to be available by prescription in March) about going on this new drug. 

Here's hoping that my insurance will cover the drug and it will help me in the long run...take a read on the National Multiple Sclerosis Society webpage.

Thursday, January 21

My Car & Me

I had to go to the dentist (the devil) this morning.  I parked my car in a 1 hour short term parking zone - I knew that i was taking a chance - and went into the office.  4 hours later, i made the trek back to the car, that was still there (with no boot/ticket, etc) and it occurred to me that I could tell this story. 

The place i feel safest and most comfortable is driving (speeding) in my car!  I actually own my "dream car" (of sorts).  Years ago, my then boyfriend, C and I used to talk about owning a manual Civic EX with a the time we were driving a Buick Skyhawk that we lovingly referrred to as Betsy (of course).  He paid $500 for Betsy and we drove $5,000,000 worth of that car.  Betsy took us where we needed to go, when we need to go - no questions asked, until the day that she just died!  I've stepped up from that and I actually own the Civic EX with sunroof.  It's automatic because G can't drive a stick...WTH???  anyhoo...i digress...

I feel safest and most comfortable in my car.  If i'm out somewhere and have to walk to it, i can't wait to get to it.  It's the one place that i don't feel affected by this disease AT ALL!  
  • When I can hardly walk/stand, I can drive - no problem
  • I will NEVER fall while IN the car (maybe coming out or going in but never while sitting in it)
  • No-one can see me struggling to get by
  • I can still drive "like a bat out of hell" if I want to (i have to take my time when i'm walking esp if i'm on my own) 

On top of all that, i actually LIKE my car and never once regretted buying it!

Tuesday, January 19

Day 1

Well i finally did birthday came and went, i had all the tools that i planned to use so i had NO MORE excuses!  i did my hour of exercise, my first of many for the year :-)  I know that it's not something that everyone shouts from the rooftops, but for me - it's a big thing, so i'm shouting...i will keep you all updated of the progress i make as i struggle thru.  I must mention that, of course by the time i was done, i could barely stand - let alone walk; i was so unsteady.  I forced myself to get thru a shower and then i let my feet/legs get a half hour or so rest before i went to the kitchen to find some dinner.  I didn't go anywhere or do too much on my feet for the rest of the nite.

I sometimes wonder, is it a good thing pushing myself thru the exercises?  (the good thing is that i am at home, thank goodness i'm not in the GYM because we all know what could potentially happen (of course I may FALL!!) and that would be so embarrassing that i'm not sure if i'll ever be able to recover.) 

I'm hopeful that eventually exercising will assist with the weakness i experience after walking/standing for lengths of time and I'm not too late with starting.  the thing is that NOT pushing myself (which is the alternative) pretty much equates to NOT exercising and see where that has gotten me so far...

Thursday, January 14

A Jokey Story

I have the ability to laugh at myself.  Again, if I don't laugh, i'll I have to tell this story.  In the post before my birthday, I mentioned that i was off that Friday because the crew was going to be headed to the mountains - as an aside, we never made it to the mountains because of the weather here in GA that weekend (snow and ice cyah done)...steups, BUT we made the best of it and it was a good weekend nonetheless.  Anyway, I had BIG plans for the Friday because i had a lot of errands to run before we headed up there.  Woke up early, took G to work and headed home to get started. 

We live in a 9-unit townhouse structure with a shared driveway, which is where we can park.  So i get home and pull into my spot, open the door and as i place my left foot on the ground, i realize that it's on a big patch of ice.  hmmmm, but i'm a woman on a mission, so i figure if i hold on to the door for leverage, i'll be okay right?  WRONG!!  As i pushed up out of the car, i slipped and buss meh ass right in the parking lot.  OYE! 

No biggie, I'll just get up and move on...well the problem with that was it was such a big patch of ice that no matter how much i tried to get up i kept slipping right along.  So by now, i was laughing so hard because i couldn't believe this pickle i was in.  Then, i had a thought...gosh i hope noone is looking out their window and seeing this.  Same time, i hear my neighbour's garage door opening - GASP!  By this time I have edged over trying to get past the ice, so she runs over and as  i get into the SNOW (yes in Atlanta) she helps me up.  K, who was inside the house at the time came flying downstairs just about that time and she too, slides into the car as she was trying to get my stuff that was left behind - luckily she didn't fall too!  We get inside, laugh my ass off, WARM my ass off and the day continues....remember I'm a woman on a mission.

About 2 hrs later, I decide to go to the bank.  I pull up in the parking lot and as i put my left foot out, it slides so i realize that i'm by a patch of ice AGAIN.  I say to myself, "Stacey, falling down in the parking lot outside ur house is one thing, falling down on ice in the bank parking lot is a whole 'nother story!!!"  So, i put my foot back into the car and move to a dry spot.  I get out the car, lock the door (i always forget to do that) and was so proud of myself for doing the right thing.  I'm on a mission...i took 2 steps to make my way into the bank and TRIPPED over the fleckin pavement!!!!  FELL DOWN AGAIN!!  My phone went flying one handbag the next.  i couldn't believe it.  What the?!?!?!?  This time, fortunately, i was able to get up, no problem.

I have good news - no broken bones, no casualties - I am fine and this time tho, as far as i could tell, no-one saw a thing :-)

Tuesday, January 12

Symptom - yes? no? maybe so?

One of the most frustrating things (for me) about having MS is not knowing. MS is such that it affects everyone in different ways (altho there are some constants) and there is just no telling what could happen to u at any given time. I mentioned in an earlier post that I spent 4 days in bed, just as the new year broke, so I hadn't been on the computer or doing much of anything at the time. On my first day back to work, I noticed that BOTH my arms were somewhat heavy and typing wasn't as easy as it should have been. My arms weren't numb - they just felt kinda weak/lethargic (i know that that is not really a word to describe my arms; i'm just trying to get my point across). thank goodness i din't have to handwrite anything or else i would have been screwed! Was this something else that i'm going to have to deal with???  As it turns out I'm back to normal - maybe after being "off" for 3 weeks, my body just had to get back in the groove of things?  who really knows. 

A few months ago, i was taking a shower and felt something under my foot. I tried to remove whatever was under my feet and that's when i realized that THERE WAS NOTHING THERE!!  The best way i can describe it is that all day long, it felt like i was standing on gravel while barefoot. It was then that i realized that the soles of my feet (only the left foot) and my legs up to my knees (both legs) were actually numb. That lasted for about 3 months or so and just like that things went back to normal.

I heard a story about someone i know who woke up one day a few weeks ago and couldn't see.  Long story short, turns out that his doctors are almost 100% sure that he has MS.

Everyday i wake up and hope that nothing will strike!  In addition, when something odd happens, i immediately wonder if it's a new sympton that i will have to deal with.  Having MS has made me very aware of my body and any changes that i experience.  Now, as soon as i notice something odd happening, i make sure to be aware of when it started, how long it lasted, exactly how it affected me etc.  Oftentimes, i hope that it's just my "old" body doing its thing to get thru the day.

In the words of Blinders Off, a fellow blogger, "Living with multiple sclerosis is like a box of chocolate. You never know how it will affect you the next minute, hour, or day."

Thursday, January 7

All About Me!

1st time up the Mountains

Sunday is my birthday - incindentally Saturday is my father' firends and I are heading to the GA mountains for the weekend.  Not working tomorrow, we leave here in the morning and come back sometime Sunday.  We should have a GRAND time as always (we've been going for the past 3 years; I tried to do something different this year but they wouldn't hear of it).  So...once again a post that has nothing to do with the disease (FORGET U MS!!).  I'm thankful for being able to see another year...let's see what it has in store for me.


Wednesday, January 6

New Year's Resolution

I've never made a new year's resolution.  NEVER!  Are u supposed to make them on Old Year's nite?  New years day?  Are u supposed to tell someone?  say it in ur mind? who knows - NOT me!  Well this year I'm making one and I'm saying it out loud. 

There are few other people in this world who hate the gym and working out as much as I do.  (I finally cancelled my gym memebership at the local gym which was debitting my account monthly!)  I mean, I can't stand it...If i can get my way I would get my workout in by sitting on a machine and let it do all the work for me.  I was having dinner with a friend in FL and we discussed (he feels the same way i do).  I told him to start working on a plan to get something marketed; I will be his FIRST customer. 

At any rate, i bought a Wii and a Wii Fit for myself last year.  I started off hot and heavy using them both to get my workout in daily (almost), I kept it up for quite some time and then something happened - I'm not sure what - and I haven't used either of them in a minute.  One of the most important things that an MS patient can do is to workout regularly. I know this! Everytime i go to my neurologist, he asks me how it's going....the last time he asked me I was very excited to be able to say that i was doing it maybe 2 or 3 times a week - he told me that I should increase to 3 or 4! (what does he want? blood?)

Anyway, so this year Santa gave me a Wii Fit Plus; I also bought another Wii game "The Biggest Loser" - it's a fitness program to be used along with the Wii Fit.  I am resolving this year to workout consistently.  I do not have to trek to the gym in the cold, in the rain, in the heat...I will be IN my living room - I have NO excuse...besides who benefits in the long run?  ME!

Tuesday, January 5

Back to the Grind

I've been on vacation for the past 2 weeks!  Do i really have to go back to work and jump right in and get back in the swing of things like the last 2 weeks didn't happen?  yes...i do...ugh!  not my idea of fun.

Anyways, so the first week i was in Atlanta and had a house full for Christmas but the following week, I headed to FL to get some heat and some sun.  Maybe my body couldn't/didn't want to deal with the temperature change, so imagine I went down there and i got sick!  The only saving grace was that i got sick on my last day there or else I would have been pissed off that I couldn't enjoy the warm weather.  I've spent the last 4 days hunkered down in bed trying to nurse this flu so that things can go back to normal. 

So's back to the grind...working hard - now and again, hardly working :-)