March 26th!

I feel really badly about this...Friday was my grandmother's birthday and i didn't mention it...I spoke with her, but i didn't call it out here...

She turned 99!!!!! I have good genes...there's hope for me yet :-)

HAPPY belated BIRTHDAY GRANNY/GRAND MA MA!!!

Friggin MS *sigh*

I am staying up now...LOL!!!  it was too funny last week tho...fallin asleep and/or snoring is NOT cool on a  conference call - esp if u might be called upon and have to give ur thoughts.

anyhoo, so i've found another helpful website...

www.patientslikeme.com

it's really a website that, as its name suggest, you can go and find other "patients like u" and read their stories and bounce around ideas and such.  that's where i found most of my information on the alternate drug, 4-AP that my doctor was tellin me about.    It's somewhat confusing to me because it appears that it's the the base drug of Ampyra and has been around for some time now...in its (raw?) form tho, it hasn't been approved by the FDA.

Nothing is ever simple...esp. when dealing with MS.


I was talking to a co-worker earlier and she told me about someone she knew who also has it, but before she was finally diagnosed, her doctors thought that she kept suffering from food poisoning!  WTF???  food poisoning???  Does the disease really present itself in that way too????  We didn't spend a whole lot of time on that, so i'm not sure what else the chick may have been going thru, but geez louise!  no wonder there's no cure!!!  Everyone's TOTALLY confused!!!!

Muscle Relaxants

i already mentioned that my neuro prescribed the muscle relaxants for my Spasticity.  Well one of the side effects is drowsiness.  I work from home and so EVERYTHING is done virtually; meetings, presentations - everything.

Well, today i was on a conference call - an hour long one (i honestly believe that as a company we spend waaaaay too much time on calls, but that is jes me; as usual, i digress).  I was sleepy beyond belief!  It took so much out of me NOT to fall asleep.  I didn't really focus on the blasted call because i was so focused on NOT fallin asleep.  At 1 point, i think i almost snored....it might have been just as i caught myself from falling off meh damn chair!!!!

I have another call tomorrow from 3-4:30...wish me luck!!!  I really really hope that this is not what i have to endure for the next 6 months or so; i may have to look into other options.

Well...

My doctor's visit didn't really go according to MY plan.  It's not bad news, but i havent gotten a prescription for the new drug.  UGH!!!

I have to be approved by the insurance company BEFORE i can get the drug.  I have started the process...the forms have been signed, but it will be a few weeks before I am approved (by every Tom, Dick & Harry); who knows when i'll actually HAVE the drug in hand....again, oh well, not much i can do about this.  At least the process has started.  He also told me about an alternative to the Ampyra (in the event that i am NOT approved or the cost is astronomical) that will be cheaper and i won't actually have to go thru any kinda approval process.  Maybe more to come on that...

I have to admit, i never went to see him regarding my walking issues.  I didn't think that it was a sypmtom per se, just the disease progressing along it's awful course.  Well he got to see me first hand yesterday and is concerned that i may be relapsing!  Oh Lord...really?  As a result, he has sent me for a brain/spine and thoracic MRI; a brain MRI is long and torturous enuf, I wonder what all of them put together must be like.  Not looking forward to it really...but again, what can i really do?  The other thing he informed me is that i am suffering from Spasticity.  I've heard of/read up on Spasticity before, but i thought that it manifested itself as jerky movements accompanied by pain...didn't realize that the stiffness/weakness that i suffer from is also part of it.  To help with that, he has given me some muscle relaxants.  He also mentioned my going on steroids to help with it, but i told him that i'd rather NOT do that, so will try the drugs (i have no problem taking drugs) combined with PT and hopefully, things will get better. 

• Where the hell did I pick up this disease? 
• How am i the "lucky one" to "pick up" this disease?
• Why me?

Soooo many questions that i have no answers to...it is what it is, i guess.  I didn't ask for it and can't return it so i just have to deal with it!

My MS is Temperamental!

If it's one thing i absolutely HATE about having this fleckin disease is not knowing what is going to happen from day to day.  It acts up when and IF it feels like, regardless of what i think/want.  I went to FL this past weekend...got in around 2 Friday morning and left Monday nite.  I totally maximized my time there...hold on, i HAVE to tell this story...

For those of you who have been thru Hartsfield Internation Airport in Atlanta, it's HUGE! 

5 concourses with a train between each to take you where u need to go...anyhoo, so i check in and get my chair and i'm on my way to gate A1. Looooooooooooonnnnnnng story short, the fligh was delayed and because of mechanical problems, the original aircraft couln't be used...they had to find another plane for us.  No biggie, cept that it's sitting at gate B24!!!  F**KIN-A!  by this time, the wheelchair attendant is long gone...so i have to go ask the gate agent to call someone else to take me over there...i am very polite and soft spoken (again others might disagree, but i am), so i go over and POLITELY ask that agent to call for assistance.  Her response, "WHAT??  U CAN'T WALK???"  I really had a few choice words for her, but i bit my tongue and said. "Stacey. be nice...she has to help u...WTF???  was she serious???  would i ask for a chair if i didn't need it???  anyhoo...as usual, i digress.  I FINALLY get to FL and find out that i actually scored a 2fer deal.  Not only do i get the heat/sun in FL, but Machel Montano (one of the biggest soca artists from Trinidad) will be there the same weeked to perform!  WOOOOHOOOO!!!!  Can't beat that with a bat! 

Anytime i travel, i'm a wee-bit concerned about what could happen...well i am happy to report that this trip, i really had no problems...i was actually able to stand on my chair for his performance and walk out afterward with no major issues.  I was thrilled...in fact for the entire weekend in FL, i really didn't have much issue - can't really complain at all.  yet, as soon as i get back to Atlanta (40 degrees), i STRUGGLE to walk from the airport doorway to the car.  UGH!!!

I am beginning to think that the disease has morphed itself into an "island" disease and it too, hates and acts up more in the cold temperatures.

MS Walk Challenge - Carolinas

so...

G2 is walking in Charlotte this year in the MS Challenge Walk.  It's a 3 day, 50 mile walk taking place in NC on June 4-6.  Let's raleigh around her and Move It together!!!  BIG LIME IN NC that weekend!!!  Here's the link to her website:

G2's Website for the Challenge Walk

St. Patrick's Day

okay...a bit late, but better late than never right?

WOOHOO!!!

I was patiently waiting for this day...i was able to eat meat...

5 of us went to out most favorite(ist) place and got down...my orders?

• PORK Belly
• LAMB Chops
• PORK Shoulder

It's a tappas bar, so the dishes are a 1 serving type deal, but boy did i get my meat on!  Hope everyone wore green and was able to drink their GREEN BEER!!!

So Far So Good

Everything I've found out about the new medication so far is good news...

1. IT IS now AVAILABLE!!!
2. The manufacturers have negotiated a price of $40/month for privately insured patients (hoping that i fall in this category; can't imagine that i don't)
3. The specialty pharmacy I use for my other medication has it and will be able to mail it to me (also hoping that this would be the case so i wouldn't have to search out a new pharmacy)

Next Step:

• Go to my doctor and getting the prescription!

Everything couldn't be looking so good and then i go to him on 3/23 and he doesn't want to prescribe it for me could it?  I am the biggest pessimist that u'll ever meet, but i am being very positive right now.   I cannot believe that he won't want to prescribe it for me - that is just NOT an option.

Anyhoo, so mark ur calendars!  :-)  3/23 @ 2:30, one week from today, i go to him.  You will get the news on 3/24 :-)

I couldn't think of an suitable picture, so enjoy a picture of me, since this post is somewhat personal

:-)

MS Awareness Week is Over

this is the first time since being diagnosed that i was even aware of an "MS Awareness Week" and i'm glad that i was able to participate this year.  The "party" at the MS Society of GA was nice...good times, with good people.  Thanks to all of you (u know who u are) for your support - either wearing orange for the week or coming to the party...

Enjoy a few pictures...

Day 4 MS Awareness Week! National MS Society Challenge Walk

so...

G2 is walking in Charlotte this year in the MS Challenge Walk.  It's a 3 day, 50 mile walk taking place in NC on June 4-6.  Let's raleigh around her and Move It together!!!  BIG LIME IN NC that weekend!!!  Here's the link to her website:

G2's Website for the Challenge Walk

Island Girl

I have said it before...i will say it again, "I AM AN ISLAND GIRL!!!"  I cannot stand the cold.  I don't mind cool temperatures, but i love the heat.  Now don't get me wrong, i can do without the sticky humidity and all that shit, but the hotter the temperature, the better for me.

Well, i think that this rings true also in my MS sufferings...in an earlier post, i talked about heat exacerbating the symptoms and luckily for me, i haven't experienced that.  What i have experienced for sure, is EXTRA stiffness in the COLD!!

Now, i am sure that everyone gets a little stiffer in the cold, that's only natural right? but can u imagine trying to get into a car and not being able to bend ur legs???  WDF?????  Saturday nite, we went to a party.  It was a club tuh boot, don't remember the last time i did that (so not my style anymore! between the natives and their monkey glands, people stepping on meh foot, 1 fella actually coffed me in meh belly as he was walking past - what the?!?!?! but i digress).  Anyhoo, so at the end of the nite, time to go home; I wasn't driving so the driver went and brought the car around.  G climbed in the back seat first and then i tried to follow and!  what the hell...got my left leg in okay-ish, but why couldn't i bend my right leg to get in????  I was soooooooo stiff, it wasn't even funny.

Anyhoo, i'm happy to report that Spring looks like it's finally coming to Atlanta - doh mind we had a snow storm last week!  It's been in the high 50s and 60s for the past 4/5 days straight so hopefully Ole Man Winter is on his way out...i'm ready for it - i've been hibernating for the past 4 months and i'm starting to slowly wake up!

Physical Therapy

I've been going to a physical therapist.

While exercising and working out will help in the long run (so they say), I didn't think that i was getting what i wanted/needed from doing anything on my own.  I've shared already that sometimes after doing my thing at the house, i could barely walk and quite frankly, i just wasn't sure if that was really the right thing to do.  If i didn't push myself, i felt as if I was doing nothing, but on the flip side, if i pushed myself, then i was of no use to anyone after the fact.  I made the executive decision that i needed some one on one attention with someone who could give me some targeted exercises to help me with the situation i am in.

On one of the nights that i went to the workshop at the MS Society, i asked 1 of the associates for a list of Physical Therapists with whom they are affiliated or work closely with on a regular basis.  She gave me the list, i called my insurance company to see what coverage i might have for PT (how excited was I that PT was included in my plan!), chose a PT close to the house and have been going to see her since the end of February.

i don't know if it's mind over matter or the stretches and exercises that she's taught me really are worth something, but i have seen an improvement *maybe this wasn't such a bad idea after all*!  I am able to stay on my feet and walk around for much longer than before - don't get me wrong, i still have "issues" but the onset is after a longer period of time.

I will admit too, that now that i'm actually seeing improvement, i am more motivated to continue (altho i was a slacker for most of last week and didn't do what i was supposed to (but that's another story)).  Did I mention that my appt. with my neurologist is 3/23?

so... between these exercises and the new medication, maybe - just maybe - things will be back to normal sometime in the near future.

It's Time!

MS Awareness Week - Day One

3/8/2010 - 3/14/2010

Check out the National Multiple Sclerosis website to see how you can Move It!!

www.nmss.org

Orange!!!

I hope u ALL have ur orange gear for next week!!

MS Awareness Week, March 8-14....

wear orange - that's our colour! :-)

the Last Night; my Support Group Part III

Last night was the final session of the workshop.  The group is going to try to keep it going informally just so that we can meet and keep in touch with each other. 

• Last nite, 1 of the chicks said that this was the first workshop/seminar that she's been to where everyone was at the same level. She's been to other workshops where people were in wheelchairs or the MS was so advanced that she didn't feel as if they were "like her".
• This was the first time EVER for me that i have even been around other people with MS...I know now FOR SURE that i'm not alone.
• We've found that many of us have had doctors who insisted that whatever we were going thru at the time was not the MS but at the same time, couldn't tell us what it was.  That's most frustrating!!!  Now we can bounce ideas, symptoms and thoughts off each other. 

U know they say that "misery loves company" and for those reasons alone, we are definitely going to meet informally going forward.  The "official" workshop is over, but we all live in the area and have exchanged numbers and email addresses so that we can make it work.

I now have Support Group Part III.

Ampyra Updates

So, I've found out a little more about the new medication.  Remember the last thing i discovered was that it would cost $1056 for a 30-day supply?  Well i was on the manufacturer's site yesterday and found out that:

1. Some patients meeting a certain income requirement may be able to get it at no cost! (i can dream on about this - i am almost positive that i won't qualify)
2. Other patients who are on Medicare Part D (as opposed to A, B or C?) may be able to get some kind of financial assistance
3. Yet another subset of patients with private insurance (this is where I fall) may be able to get it for a copay of $40

WOOHOO!!!  I think that i can handle $40 a month for my medication.  The drug is also only going to be available thru specialized pharmacies and will be mailed to patients - it won't be available at ur local CVS.  I already use one of those pharmacies so here's hoping that mine will carry it and it won't be too much of a hassle for me to get it.  Altho, i will say that NOT having to fork out $1K a month is plenty to be happy about even if i have to run around the place like a chicken without a head to actually get it mailed to me.

There is also a Webcast being held on March 17th that i plan on attending; hopefully some of my questions will be answered there.

40 days and 40 nights...

So...I'm not catholic and we never gave up anything for Lent while i was growing up, but 1 year about 8 years ago or so, i decided to give up cigarettes for Lent...i did and never started back smoking!  Ever since then, i decided that i will give up something every year.

For the past 3 years or so, it's been meat.  I take my hats off to those vegetarians out there.  While it has gotten easier over time and i have learned that i don't always have to eat meat, there is no way i could NOT eat meat for the rest of my life - no way in hell, actually!  Anyhoo, so this year, i decided to "take it up a notch" - i have given up meat AND beers.  It's been going well...altho, this past weekend, we finally made it up to the N. GA mountians and while everyone was chomping down on their BBQ chicken and hotdogs, i was eating Tilapia (cooked on the grill; quite good) and a bloody vege burger. 

I cannot tell a lie - the vege burger was edible.  The chef said that he couldn't really tell whether or not it was cooked because the appearance NEVER changed from the time it got on the grill to the time he took it off - WDF?!?!?  It was full of proteins (good thing i spose) but it didn't really have much of a flavour and it was kinda rubbery/hard/not the best texture. 

Now why in the name of EVERYTHING good, would i give up pork to eat that shit on a regular basis?????
it's been 1week...i have 4(?) more to go...OYE!!!!