:-) 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!

1 Step Closer?

More news about research, treatment etc:

FDA Agrees to Fast Track Status for Drug Being Tested for MS

It's yet another disease modifying drug to slow down progression - still no cure, but research has moved in leaps and bounds since i was first diagnosed.  There were only 4 drugs available to me at the time, soon patients will be able to look at scorn on specific drugs because there will be so many on the market.

In other news...now, i'm anaemic!  not sure when that happened or why!  Oye!!!  the good news is that i went to give blood the other day (my all time favorite thing to do) and they gave me my walking papers and refused my blood.

WOOHOO!!  boy was i happy...being stuck with that needle is NOT my idea of fun.  It's [ ] <--- that wide; i swear! 

there's always a silver lining somewhere... :-)

HAHA!!

I saw this picture while i was looking for something else and I just couldn't resist!  This is how i feel too...actually it SUCKS ASS!!!!!

Awareness

What is it about when u know about somehing u hear more and more about it?  For instance, you decide to buy a G35 and all of a sudden those are the only cars on the road (btw...i really think Stax4 is going to be a G35 coupe, but that's a story for another day).  I was diagnosed in 2005 - none of my friends knew about MS, none of my family (cept maybe the doctors and nurses amongst us) knew about it.  i was the pioneer - wanted to be first and foremost - kinda like when i got my ticket...I was in front winning the race!

Now, every 2 minutes i look around, either someone else i know is being diagnosed or someone i know knows someone else.  It's become the "in" thing.  It's just kinda amazing to me how many people i've heard of who have Multiple Sclerosis.  I guess in the grand scheme of things the doctors are getting smarter afterall and a diagnosis is no longer taking years and years to make.

Makes you wonder...since so much progress has been made with diagnoses, maybe there might actually be hope for their figuring out the root cause and a cure might not be too far behind.  Go figure!

MiSdiagnosis

I've wondered in the past if the doctors made a mistake and i really don't have MS.  Of course, after I have those thoughts, i think well there has GOT to be some kinda explanation for the things that have been happening.  I can probably explain away the falls as my being a klutz, but everything else?  not so much.  Also, the only symptom (Y can't i spell this word on the 1st try???) that I experience is walking problems (i'm not complaining, really I'm not but it always makes me wonder).

People have been asking me recently if the new meds are working.  I knew without a doubt that the Ampyra made a tremendous difference - no question.  Have i seen a difference now that I'm also taking Tysabri?  I really can't say for sure.  I mentioned before that the Tysabri at first appeared to be negating what the Ampyra did.  That wasn't an EXACT statement, in that before taking the Ampyra, my feet/ankles (that region) were very weak...started taking the Ampyra and that was improved and now, I no longer drag my feet but after I started taking Tysabri and i stay upright for too long, my knees start locking up...WTF??!?!?  Is that the MS or something else?  Is it that the muscles that normally keep that from happening are weak?  what the fcuk is it?  Now, i will admit that it is not as bad as the first weekend after the 1st Tysabri infusion but still...

so to go along with those thoughts of a misdiagnosis, I also wonder if I'm taking all these meds for nothing.  Are they making a difference?  Shit - hell if I know! i guess...I hope...but i really can't bet my life on it! 

Question

Does anyone out there know FOR SURE if i can write off personal training as a medical expense if I have a prescription/note from my doctor?  NOT physical therapy, but personal training.

Oops!

I made a mistake with 1 of the small white pills!  I'm supposed to take Baclofen and Ampyra @ 9am, Baclofen @ 5 and Ampyra @ 9 pm.  Well last week sometime, my Outlook reminder went off at 5 and I was distracted and popped both the Baclofen and Ampyra...I remember that just as i swallowed them, i said, "Oh shit!"

so i looked up a hotline number online, dialed it and it went straight into a poison center.  I told the chick who answered what happened and she looked up the drug and whatever else and told me, "it's a very strong drug and u took it 4 hours earlier, so just hold on lemme check with the toxicologist on staff"... she came back and the following was our conversation

Chick: Are u alone?

Me: Yes

Chick: Is there someone u can call to come stay with u for a while?

Me: Yes

Chick: Because the drug is very strong and so u MAY experience an altered mental state!

Oh goody!  Just what i want to hear...she told me that i could feel sick, dizzy, nauseau, confused among other things and i should call 911 if things get really bad.  She took my number and said that she'd call me in 2 hours to see how things were.  She did and luckily all was well - I had no reaction of ANY sort...Of course i didn't take it again at 9...just started back at 9 next morning.

HAPPY TIMES!

MS in the News - Again!

so we all know that there is no cure for MS - heck I would bet my last dollar that the researchers are too confused to figure out what could possibly cure; hell they can't even figure out the cause.

There are drugs on the market called disease modifying therapies that slow down the progression of the disease.  I was on the daily shot, now I'm doing the monthly infusion which i am loving (from the frequency aspect); no traveling with the syringes, no walking with them when i spend the nite out, just no worries about taking the bloody thing period!  The Ampyra that i'm taking is different; it's not in that category.  It's a drug that was developed that is specifically for the walking disability.  It does nothing to slow down the progression of the disease; it just helps patients walk faster and feel stronger overall.

Those disease modifying therapies have ALL been shots of some sort.  Monthly, daily, weekly, every other day - all shots.  Well there has been a new drug developed that the FDA is expected to approve in September that, finally, is taken orally!  This is great news for all involved.  Read more...

Will i switch?  Nah...don't think so...the Tysabri will still be the most aggressive and possibly best one on the market, so i'll give it a chance to work...besides which that will be one more  (possibly small white pill) to add to my handy dandy organizer and make me look more like a dealer.

In other news...big match up today - Germany vs Spain.  Germany has been playing like a well oiled machine, I hope they mash up Spain the way they did Argentina.  I'm gunning for a Netherlands/Germany final.

Things Went Well

Everything went well on Friday; nothing to report except that apparently i really do have tiny, rolling veins.  STEUPS!!  This time, I was stuck twice, in 2 different places, and then stuck AGAIN because they couldn't get blood from that vein...go figure!  I was able to enjoy the weekend altho it started off shaky with that ass raping that Germany gave Argentina in the World Cup match on Saturday morning. 

I've never seen another MS patient suffering like me with walking troubles.  Any time i go to see my doctor at the MS Center, other patients are either walking normally or at the other extreme and are in a chair/using a walker etc.  I've never actually seen someone walking slow or dragging their feet or anything like i do - until last week Friday.  The chick was much worse than I ever was; it appeared that her legs were totally stiff and unbendable.  She didn't use any walking aide as far as i can tell, but when she was leaving the infusion room for good, she held on to someone to leave.  I AM LUCKY!  I don't think i can say it enough...I can't imagine what she must go thru regularly - of course, i don't know if she walks like that all the time or if she was having a bad day - but imagine walking (or trying to at least) and ur legs just don't corporate with u and ur knees refuse to bend!  WTF???

I've said it before, I'll say it again, MS really is a shitty ass disease!

Infusion #2

Geez!  Has it been 4 weeks already? 

The 2nd infusion is tomorrow.  I think i will have to ask for someone other than the chick from last time because I cannot live thru another "catch me if u can vein" incident.  While i didn't have any side effects to the medication, I really couldn't do much that weekend because of reverting to how i was before even taking the Ampyra.  That has since gotten better...but this weekend G2 and clan will be here and it will NOT be acceptable if i can't do much, esp since it's July 4th and there's a shitload of limin to do.

MS Diagnosis

I've been gone for a while.  I've been super busy at work and haven't known my ass from my elbow for a while, but the project I was working on is done so I'm back.

I had lunch with a newly diagnosed friend and his wife the other day.  I have to say that i've read/heard some stories of people's journey toward being diagnosed and again, I AM LUCKY.  I went to a neuro in January and I was diagnosed with certainty in May - after a slew of testing.  I've heard stories of people not being diagnosed for YEARS and YEARS.

So they start telling me his story (luckily for him he was diagnosed within no time too) and it got us to thinking...in this day and age doctors really need to get with the program.  Anytime someone enters their office and they have symptoms that don't seem to link to anything they need to immediately start thinking of MS and start trying to rule it out.  It's not right that patients have to suffer through an undiagnosed/misdiagnosed sickness and listen to an asshole doctor who might be trying to prove that (s)he earned her medical degree when all of us out there (diagnosed folk) can say, "oh yeah, that's classic MS!"

Loss for Words

well...things are stable, so i really don't have anything to report. 

That's a good thing! 

I spoke to a nurse at my doctor's office (about reverting to not being able to be upright for too long since taking the Tysabri) and she told me to just let the medication do its thing.  I honestly think (what with my medical degree from the internet and all) that my body is just trying to adjust to all the various medications in it and I'm not too concerned.  I've been moitoring how things go (the one thing that I do all the time, dealing with this disease) and if things get really bad (worse than before), i will make some moves.  So for now, all is "well" and i'm just trucking along.

Infusion #1

it went well!  No horrible side effects, no horror stories - NOTHING!  whew!!  Actually, the infusion itself was supposed to take an hour...I, of course, was done in half hour but they assured me that wasn't anything to worry about.  They still kept me for observation afterward and I was a little woozy at the end but it was because i had taken 2 Tylenol PM Xtra Strenght before the procedure.

so I've mentioned before that i donate blood regularly and I've also mentioned how much I hate needles.  Everytime blood is taken from me, for whatever reason, i tell the nurse/attendant/whatever that they have ONE shot and that's it; no do-overs, 2nd chances NOTHING! and no-one ever has a problem....i've heard some horror stories about rolling veins and shit...so on Friday, the chick tells me that they are going to take blood and then set up the IV blah blah blah...I say okay and nothing else, she was a bit of a talker so i didn't want to encourage her; let's just get this shit started already!  She put on the torniquet, started tapping the vein and feeling around for it, stuck the needle in and NOTHING!  WTF??!?!?  the vein, as she put it, kept running away from her...eh???  really???  and she started poking around, "trying to catch it"...i couldnt believe it...i should have threatened her like everyone else!!!  eventually, she had to ask someone else to do it because she never "caught" it...by this time, i'm thinking i CANNOT do this again, so this one better get it right - she did and we started the process...

My Arm w/all the IV Tubing

I stayed in for the most part this weekend but I have noticed that either my body is trying to get used to this additional medication or something, but it almost seems as if the Tysabri is now negating what the Ampyra was doing.  I'm not dragging my feet but somehow i can't stay on my feet as long anymore.  UGH!  i called my doctor's office to talk about that and left a message..so more to come

CONGRATULATIONS!!!

G2 walked all 50 miles...I'm so proud of her!  She did good :-)

D'oh!

How could I forget...

G2's walk is this weekend...let's also wish her luck across the miles, oceans, continents etc :-)

okay...so we go waaaaaaaaaay back; this is an old picture - i had hair!

Happy Times!

Had dinner with my fellow MSers last nite.  we had a really great time and it was good catching up with them - i haven't seen then since the end of the seminar.  We exchanged war stories of the past few months, laughed, they commented on my walking and just had an overall good time.  I've said it before and I'll say it again, my friends and family are the best at supporting me and making adjustments etc, based on my needs but there is nothing like talking to and swapping stories with other MS "sufferers".

Anyhoo...tomorrow is my 1st Tysabri infusion; I have to admit that I am extremely excited.  I am hopeful and staying very positive about what this treatment can do for me. 

• The risk of the brain infection is in the back of my mind, but way way back; I'm not going to lose sleep over it.

I'm already enjoying NOT sticking myself everyday...in fact i was supposed to be off of it for 2 weeks prior to the infusion, but i stopped it about 3/4 weeks ago :-).  I go in at 1:00 tomorrow afternoon and will be there for 3 hrs (pre-infusion work/infusion/monitoring) - honestly, i can think of a few better things to do for 3 hrs on a Friday afternoon - but hey!  I chose a Friday afternoon so that I have the weekend to recuperate if necessary.

Wish me luck (from across the miles, oceans, continents etc)!!!

Buss Meh Ass...Again!

So...falling down is a regular occurence with some sufferers of MS.  I've mentioned in a much earlier post that I used to fall down all the time growing up (maybe that was a clue?). To this day, my father will tell anyone who will listen the extremely story of my falling on Frederick St! At any rate, falling is jes one of those things that i have to deal with - between my dragging feet and lack of strength sometimes - anything is possible.

So i fell "up" the steps on Monday.  I think I've mentioned before i have 32 steps at home to contend with (3 story townhouse) - one of my mother's dreams is to win the lottery and buy a flat house for me. At any rate, I was walking up the 1st flight of steps (entrance to the living room area) after a long drive (I could actually feel myself getting tired as I drove) and at the very last step, I didn't lift my foot high enuf to step up and u know it - buss meh ass right there.  I was carrying 2 bags at the time, so naturally they went flying - luckily i feel forward not back! 

Now what is it about when I fall that I immediately start to laugh hysterically (even if i'm alone)!!!  Maybe that's my way of dealing with any embarrassment, maybe it's because I am able to laugh at myself - who knows - but i fell and immediately started laughing HARD!  I have a friend staying with me these days, he must think that I am a mad woman because every single time (of course I've fallen at home before) i fall, i laugh like crazy.  This time i was laughing so hard that he actually helped me up because it was obvious that i couldn't help myself too much at the time.  UGH - f*ckin Multiple Sclerosis!!!

May 26, 2010 is World MS Day

World MS Day : National MS Society

My 1st Drink...

So i had a drink (since the end of April; bout 6 months ago!) last week Friday; was a beer - only 1 and it was COLD in d ice (ice COLD)!  went down good; nothing like an ice cold beer!  We were limin at the house - no need to risk anything happening outside - and i figured that it was as good a time as any to have 1.  Kaliber is okay and all but i mean c'mon...Happy to report that there weren't any adverse reactions and i wasn't wasted after 1 beer! 

:-)

I Have MS, It Doesn't Have ME!!

So I mentioned in my last post that the friend came up to me in the cooler fete and told me that he admired me for not allowing the MS to keep me from having a good time.  I'm limin hard, fetin up a storm (partying), driving (again some say like a bat out of hell, i beg to differ) and livin like i don't have a degenerative, incurable, neurological disease!  my response to that is that I HAVE TO!!!  I'm taking all the bloody pills and shots (WOOHOO, last nite i threw out all the shots i had left; I can barely remember the last time i injected myself; can't wait for the new treatment to start), exercizing and managing the disease as best as I possibly can but I ABSOLUTELY REFUSE to stop doing shit that makes me happy. 

I've mentioned before that driving is the only time that i feel like I'm on level playing field with everyone else...there's no stiffness, foot dragging, needing to sit, blah blah blah; I feel totally normal.  I'm not going to stop driving jes because something MIGHT happen at some point.  Is that stupid?  some may think so but F*CK IT; I'm not giving it up. 

Sometimes, if someone asks me in shock/horror if I'm doing something/going somewhere alone, I feel a little resentful (i know it's genuine concern and I really do appreciate it), but somewhere deep inside, i want to say that i'm not trying to be a burden to anyone and there are some things that I CAN/WILL do on my own. 

• Am i going to go to a fete by myself? NO!
• Will I go shopping alone? Absolutely - I'm not much of a shopper, but I can spend hours in my favorite store, but as soon as shit starts feeling weird and going wrong, I am out of there!

 I've said it before, my hero days are over; i know my limitations...I'm not going to willingly put myself in a situation that I know i won't be able to handle.

Cooler Fete

So I mentioned that cooler fete (party where u pay to go in but u don't buy drinks (altho there is a bar) because u walk with a cooler(any size; I've seen refrigerators converted to coolers) filled  with drinks) was this past weekend. 

End of the Night (this picture does not do the cooler justice; it was much prettier at the beginning of the night)

As usual, we packed up our cooler with everyone's poison of choice (Kaliber for me - YEA!), threw my chair in the trunk and proceeded to have ah time  - we didn't leave till 6:30 the next morning, so I think it's safe to say that we had a great time!  J, who has not seen me since December, told me TWICE that he was totally amazed AND impressed by this new medication.   I didn't use the chair half as much as i used to and when i did, i only used it because i didn't want to chance not being able to walk out NOT because i had to. 

Spoke to K this afternoon.  She'd been watching me all nite and was also impressed with how long i was able to stand, able to take ah lil wine here and there, walk in and out of the venue without assistance and lime lil bit outside when we were leaving :-).  Even G said that it was most obvious Saturday nite, just how well the Ampyra is working.

At some point, i was sitting and a friend, who is new to the lime, came over and said that he admires me because I don't let anything stop me...i'm out there having a good time inspite of the MS and I just make adjustments because i know my limitations.   He absolutely loves my attitude about everything.  I've mentioned before how Trinis find humour in everything; another friend said to me, "want to take this outside?  Ah go (I will) take ur chair from u, leh we (let's) see just how gansta u are then!"

Ahhh...happy times! :-)

Legalize It...

they say that weed helps with the pain...i don't know, but when i was going thru my crap in 2007, i tried the weed (mummy, close ur eyes) because the dumb ass neurologist i had at the time, couldn't tell me anything.  i only did it once or twice - it's something i didn't enjoy (i know some people might be gasping in amazement now) and it didn't help me one bit - maybe because i didn't smoke it enuf?

Montel Williams used it (not sure if he still does) at some point when the disease was wreaking havoc on his body.  In this interview, he says that it actually helped with some of the other symptoms as well.  Of course, in CA (and a few other states) medicinal marijuana is available.

I was talking to a friend of a friend the other day and he mentioned that his father has MS too.  I'm not sure how he's been affected or what meds he's on or anything, but the fella said that about once a month he drops a pound of weed off for his dad to ease the pain. 

Begs the question...should doctors be allowed to prescribe marijuana as part of the MS regimen for their patients if they think that it will help?  sure beats walking around with a pill organiser and popping hundreds of pills at various times in the day...hmmm

Food for thought...

MS Walk Atlanta

A few pictures from the event...okay so we forgot the camera so we only have a few pictures of our group "Trinis & Friends Against MS"- not the entire event but enjoy anyway...

ME!

                           The Group!

                                                                        Walkers! (thanks folks!)

Non-Walkers!

Someone had to stay with me in the park to wait for everyone else to get back :-)

HAH!

So the bus - Stax3, my car -  has been the method of transportation for the past few weeks since I, the bus driver, am not drinking.  With this whole "no drinking" thing, I've come to realize that if we go to a restaurant or something, after we done eat, I am ready to GO!  Nothing else going on, because sitting watchin everyone get their drink on is no fun for me!

well, we went to a sports bar after the MS Walk, Atlanta on Saturday and the lime was too sweet (going good).  I couldn't take it anymore and I ordered a beer - Kaliber; the Guinness non alcoholic beer!  Well i've never understood the concept of a non-alcoholic beer - beer is an alcoholic drink!!! It didn't taste horribly i s'pose, it was okay, but I am throughly shamed to say that I might have been a lil tite (tipsy) after my 2nd one - LOL...*jes a little*.  What i've learned is that they say "non alcoholic" but what they really mean is "less than .5% alcohol". 

I have to laugh at myself...have I become a lightweight after not drinking for 3 weeks? Did I really get that "warm & fuzzy" feelin after drinking 2 NON alcoholic beers??????  LOL!  say it aint so!!  anyway, this Saturday is Atlanta's 1 and only cooler fete (party where u walk with ur own drinks in a cooler)...guess what I'll have on ice!

G2's Walk Challenge

Well i was supposed to go to NC and support G2 on the weekend of this walk (big lime (hang out) in NC), but there is a change of plans.  I'm going in for my 1st Tysabri infusion on 6/4, so i'm not making any plans to go out of town that weened.  Instead, I'll be limin in the infusion center with a needle in my arm! :-(

I sent her an instant msg (we work at the same place) to say that i wasn't coming and she exclaimed in horror but then when i told her y, she completely understood - OF COURSE...oh well...next time.  There's actually one in Atlanta this Saturday.  I'm going - not walking, but I'm heading down there to support K and whomever else shows up to walk it.

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

Speed Demon

I am $266 poorer...i went to court on Monday for my speeding ticket.  I've gotten about 4 speeding tickets in my lifetime - 2 of which were out of state.  In my experience, when u go to court, the fine is lowered considerably.  Well not this time....it was lowered by a whopping $16!!  I am looking on the bright side...they actually lowered the speed from 82 in a 55 to 72, so i get 2 points on my license as opposed to 4 - that is good news! 

I swear if there were 5000 people living in Atlanta, 4950 of them were in that court on Monday.  The place was lukewarm-ish, smelled frowzy and all those people!!! OYE!!  I got there at 2 and left at 4:15and I had to pull out the MS card too.  Of the 4950 people, 4900 were in line for the cashier...I had to tell 1 of the cops there that I was unable to stand for long periods of time and he worked with 1 of the employees to allow me to sit while I waited.

Did i learn any lessons?  YES!  keep a closer eye on the road looking for those torturers (cops)!!  I'm still speeding...I can't help it.  Like people who choose not to drink alcohol, I jes don't get people who drive slow!

Waiting Game

this last waiting game I've been playing is over!  I was contacted by the MS Center yesterday and have scheduled my 1st Tysabri infusion on 6/4.  The most surprising news?  The insurance company claims that they will pay 100%...when I exclaimed in bewilderment, the chick said, "yes that's what they said, but u can call me before u schedule the 2nd one to confirm that they paid in full for the 1st one if u'd like."  WOW!  who woulda thunk it...not me!

So...before starting the infusions, i have to be off of the daily shot for 2 weeks...since this process started, i have been slacking off taking the shots - i cyah lie.  So, I missed last week Thursday and Friday (the legs are the sites i hate the most), took it Saturday and completely forgot Sunday.  Yesterday morning, for whatever reason, I decided to do the right thing and take it.  F*CKIN A!!!  because of that, I couldn't go in on 5/21.  (Since this is new and I'm not sure how I'll react (side effects and all!), I want to go in on a Friday for the 1st few times.) 5/28 is out - won't be in town...so I have to wait all the way till June!  That leaves me a whole week to continue with the bloody daily shot - F*CKIN A!!!!

On aother news...the Ampyra continues to work; still no side effects and walking almost like a champ! :-)

Pill Popper

Hi,  my name is Stacey and i am a pillaholic!

Yup, it has come to this...I mentioned before that I bought a pill organiser - good thing too!  It's become very handy...

• every morning at 9 i have to take 2 (sometimes 3) and 1/2 pills...at 5 pm, I pop 1 1/2, at 9pm, i take 1 and then at 1am, it's another 1 1/2!

I eh go lie, I worry sometimes about overdosing because suppose i take the wrong pill at the wrong time.  Did I mention that all but 1 are small and white?!?!?  I have reminders on Outlook at work for during the week and on weekends, my phone alarms to remind me.  Of course at 1am every morning, my phone goes off.  I am actually becoming used to that (it's waaaaaaay past my bedtime during the week) but I've noticed that I have started waking up close to 1, so it's almost as if I don't need it anymore (i'm not going to delete it tho).  

Back to the organiser - it's helped me keep on track tho (guess that's why it's called an organiser).  Those odd times when I wonder if i took the pills or not, I just need to look in my handy dandy compartment to see if it's empty or not :-)

I've said this before and I'll say it again - i know that my experience is certainly not the worst and for that I'm extremely grateful, but being sick still SUCKS!

EFFIN Side Effects

I spoke too soon...the side effects are not from the new drug (thank God!) - it's the Spasticity medication.  I started in March at 10mg, 3x a day...I've slwoly increased the dosage and on Monday, it was increased to 20mg, 3x daily.  Well!  HMPH!!  I won't bore u with the details, but suffice it to say that I had a rough Monday nite and I was going crazy!!!!  I had NO IDEA what the hell was going on!  Good thing that G had her thinking cap on and reminded me that the dosage of that drug was increased.  Prior to this I had no side effects.

We pulled out our  "medical degrees" (from the internet) and did the research and i as it turns out I was experiencing classic side effects!!  I must say that I was thrilled to finally understand what was going on and immediately contacted my Dr.'s office.  Just before I'd increased to 20, i was taking 15mg and that was tolerable AND i was benefitting from it (10 mg wasn't doing shit for me).  They have taken me back down to 15 and I am happy to report that I had a good nite's sleep last nite (I was worried at first, but that was totally uncalled for).

Not In My Head

I really am showing an improvement!!!  

A couple people who saw me this weekend mentioned that I am walking better!  I think too that the medication for the Spasticity is finally doing something as well because i noticed that i haven't been very stiff lately either.  I eh go lie tho, sometimes i feel like a drug dealer/addict carrying around and popping all these pills when my various alarms go off.  But it's all good...

Excitement!!!

So, yesterday I had to go back to the MS Center to get my lab results etc. to see if I qualified to go on the Tysabri.  I also had a dentist's appt earlier in the morning.  I parked my car and spent most of the morning on my feet and then it HIT me...

THERE IS AN IMPROVEMENT!!!!!!!

WOW!!!  Could it really be?  Normally, when i walk to my dentist's office; i struggle (i have to park on the street blah blah blah)...again, normally after going to his office and going somewhere else, I would REALLY be struggling.  I got home after all my appts. and I was still walking as close to normal as i have in months!!!  My feet weren't dragging as i took steps and I was actually walking "fast".  A friend of mine saw me and he could actually tell that there is a remarkable difference...No side effects thus far either!!!!  I know that it's early, so i don't want to get my hopes up too high...but...

anyhoo...so the doctor who saw me today said to me, "you're in perfect health except for this blasted neurological disease eh!".  I prefer to use some other choice words to describe the MS, but hey...So...what does this mean?  Now i have to play the waiting game (as usual).  Someone from the center is going to call me after talking to my insurance company (ugh!) to tell me my copay and set up an appt. for my 1st infusion of Tysabri.

I cannot tell a lie...even though this treatment has this awful potential side effect, I CANNOT WAIT to stop taking the stupid ass daily shot!!! :-)

The Spoon Theory

I read this today and thought I'd share...it's kinda lengthy but summarizes very well how it can be dealing with a chronic disease.  It was actually written by someone with Lupus, and is a little more extreme than I am, but works just as well with other diseases too.

The Spoon Theory

A Lil Bit of Knowledge

"They" say that ah lil knowledge is a helluva ting.  I've been on "patientslikeme" more than ever this week.  I'm on the verge of stopping that in its tracks.  Quite a few people are on Ampyra or the 4-AP form of the drug.  I'm reading all their stories (good and bad; mostly good) and i can't help but wonder "what's in store for me"?  It's been 2 1/2 days...If I'm to be honest, I have no idea if i see a difference or not.  In the back of my mind, I keep wondering if I'll have any side effects and what they might be.


As i mentioned most of the stories have been good, but as usual, some of the side effects appear to be more of a pain in the ass than anything.  I've said this before and I'll say it again, "one day someone needs to manufacture a drug that does ONLY what it's supposed to do and NOTHING more!"

Day One

I had a great weekend and today was day 1 of the Ampyra.  I've been on the patientslikeme site and I've been reading other people's experiences with it and most reports have been favourable, so only time will tell if I'll be as lucky.  I'm hoping for good things!  I would say "GREAT" but I don't want to get my hopes up too high.

so...funny story...

I had to go back to my neuro on Friday for them to read my TB test results.  I didn't actually have to make an appt for that because quite frankly i swear anyone can read those results.  I could have called them and told them that I didn't have TB.  Anyhoo, so i just had to go in and get it done.  Well long story short, I was running late...so I got to the doctor's office with 5 mins to spare!!!  The office is up on the 5th floor of the building and luckily G was with me so I didn't have to park.  I pulled up, got out of the car and G screamed, "5 minutes!  no pressha!!  but RUN!!!"  i think it took me the entire 5 minutes to get upstairs because naturally I tripped right by the door of the building - didn't fall, but i had to steady myself before i could continue...

Never a dull moment with me...

Got Mail!

so i got the Ampyra yesterday...let's see what this shit can do!  There's been a slight change of plans...I'm going to start taking it on Monday.  I decided that since no one can tell me how it will react to alcohol (altho as i've said before, the medication fact sheet does not specifically state "do NOT drink alcohol while taking this medication!), I'm going to LIME HARD this weekend and start it on Monday...that's my way of dealing.

This has nothing to do with the new treatment mentioned yesterday; i'll be taking them together.  The Ampyra has been proven to specifically improve the walking disability in MS patients, the treatment is what you take to hopefully slow down the progression of the disease entirely.

On another note, I have bitten the bullet and bought a pill organizer *GASP*.  I don't let this disease slow me down too much so i'm still limin as usual/doing my thing, but if i go somewhere, of course i have to walk with my medication (remember i'm on medication for the Spasticity too).  Now I'll have another pill as well (the Ampyra is a pill- YEA), so i got a very cute organizer thing that i can actually discreetly place in my pockets if I'm out and about.


What the?!?!?  has it really come to this???

SUCKS to be sick!!!

More Results*sigh*

Did i ever mention on this site that I hate having this disease?  Well i do...i really do.

I went to my neuro yesterday to get the results of those 3 MRIs -brain, upper and lower spine.  Good news is that I have no additional scarring on my brain.  Bad news is that i have 3 lesions on my spine.  Now, in all fairness i can't really classify that as total bad news.  It explains why I am having so much trouble walking i s'pose.  The unfortunate thing is that this is the first spinal MRI i've ever had so we have no baseline to measure against.  He is concerned because I have to admit that it has gotten progressively worse over time.  It used to be that i would have problems after walking or standing for a long time; now it's almost always ALL the time regardless.  PT helps it does, but it doesn't negate the fact that the walking problems have progressively gotten worse.  He is concerned (and he raises a good point) about what state i might be in in 6 months.  Anyone around me regularly can see how it's gotten progressively worse.  So, where does that leave me?  he wants to change my meds...

Good news/bad news.  The good news is that i will no longer have to take a daily shot (YEAH BABY!!!).  The bad news is that the one he would prefer me to go on has a side effect of a brain infection - SHEEEEIT!!!!  It's a much more aggressive medication than the one i'm currently on and i've heard great things about it but... really?  do they always have to have shit hanging over ur head like that?  can't something just work FOR u without all the bloody side effects???  It's also an IV infusion so I'll have to go into his office once a month to get my infusion - HAPPY HAPPY JOY JOY!!!!  The cost?  haven't a clue but once again, I have to wait to be approved by the insurance company and everybody else in the world before i get started.

The brain infection is rare (thank God!) and it is more likely to occur in patients with a compromised immune system.  So they do extensive blood testing and TB testing before you are even considered as a good candidate for it.  I've done research and in this instance, i believe that the benefits outweigh the risks and I'm willing to give it a try.  He said that we can try it for 6 months and see how it's going/how I feel and re-evaluate if necessary.

Did i ever mention that I really hate having this disease?  I know that it's not the worse thing that can happen to me and for that I'm grateful, but i really do hate having it.

Got the Other Call

Just a quick update today...

It's in the mail!  The medication is going to arrive on Wednesday...I will start taking it on Thursday.  OYE!  Hopefully I too will have good news to report after i start taking it.  I eh go lie, I'm a little scared...what with its being a new drug and the side effects and all, but it is what it is.

Research Continues...

so...i've posted the alcohol question on the website I mentioned before; www.patientslikeme.com.  It's interesting to see the responses I've gotten so far.  They've been from people who were on the generic, 4-AP form of the drug for a while, people who've recently started and those who are actually taking Ampyra.  They've also copied and pasted links and excerpts from material to substantiate their responses.

It appears that there are no adverse effects of the 2 together BUT considering that dizziness and increased falling may be side effects, probably don't want to have the 2 in the system at the same time.  I go back to my neuro on Tuesday; i'll bring it up with him then...so we'll see...more to come - maybe!

HA HA!

I'm laughing  but it's so NOT funny!

Wouldn't u know it...it appears that no-one knows how Ampyra will interact with alcohol.

oh goody!  Just my luck...I should have been in the test group.  Did no-one think about doing tests to see what could/might have happened?  Am i the only one who thought of this?

What the??!!??

Oh Shit!

so I called my mother last nite to give her my good news.  We're talking, just about the medication in general - side effects, how it will affect me, when will i see improvements, etc - when she says, "what about alcohol?  can u drink while taking it?"  wait a minute...i have NO idea!!!  WDH???  i had no clue...how did i NOT ask my doctor that question?  I asked him all kinds of questions and didn't ask him the most important one!!!

Now, don't get me wrong...i am no alcoholic, but i enjoy some of the finer things (vodka, caipirinhas) in life at times :-).  who doesn't?

I've called and left him a message..hopefully someone will get back to me sometime today!  Ayeyayaye!!!!

Good News!

I was approved for the new drug!!!!  I will be getting a call soon from the pharmacy to set up shipment arrangements:-)  Also my copay is $50/month but I qualify to get it at a discounted rate that was negotiated by the drug manufacturer of $40/month...WOOHOO!!!

4/9

HAPPY BIRTHDAY K!!!!!

Forward Progress

I called my neuro's office today.  The prescription has been submitted to the pharmacy.  Of course there was an initial problem because my name was input incorrectly (WOW really?  I'm shocked) but it appears to be moving along.

I called the pharmacy to confirm...that chick (who of course said to me that she couldn't find me when i told her my last name!) eventually found me when she opened her eyes to look and told me that Sheila (my case manager) will call me as soon as she has confirmed my benefits with my insurance company.  She stressed that i need to give them time to confirm with the insurance company (in other words, don't call us, we'll call u)

So as usual...as with anything MS related, i'm playing the waiting game once again.

• Waiting to see what (and how) a new symptom might present itself and affect me - my life!
• Waiting to see if i have additional scarring on my brain
• Waiting and hoping that my medication is actually working and slowing the progression of this GD disease
• Waiting to be approved by the insurance company to get drugs that will help me overcome of the symptom of a disease that I have (and dint ask for)

Geez!  nothing is ever easy...

The Experience

So, have u ever laid(n?) on a flat, hard surface completely still (head immobilized by a hannibal type mask) in a cold room (thank goodness they give u a warmed blanket) for 2 hours????  That's what i did on Saturday!

What an experience...The good news is that i must have fallen asleep because when i came out of "the tunnel", i asked the technician how long i was in there and she said 2 hrs...there was no way i would guessed 2 hours...so i must been asleep longer than i thought.  I knew that i fell asleep but it must have been for a much longer time period than i thought.  Luckily for me, the noisier things get, the more relaxed i get so the more that i can sleep.  I mentioned before that the machine is very noisy - they actually give u ear plugs - so it was singing a lullaby for me each time.

At some point my head started hurting and i would shift it ever so slightly but it got to a point where it was hurting so much it was actually burning!  I guess they didn't put enuf padding behind it...i actually remember thinking, "shit!  I should never have shaved my head...if i had hair, at least that would have given me some padding back there".  Luckily, they had to inject me with a dye before taking more pictures so she was able to put more padding behind it to make it more comfortable.

MRIs are not physically painful, except when they inject the dye...but i absolutely hate to have to do them because they really can be mentally EXHAUSTING!

Today

Happy Easter to one and all!!!

Got the Call

the cost?

$350 out of pocket on the day and then the insurance company is going to cover 80% of the entire cost - ARGH!!!  i hate this insurance i have...i've had MRIs done before when i was with another insurance company and paid NOTHING out of pocket...SHEEEIIIIT!  guess i'll have to get over it.

THEN!  the same idiot i spoke with earlier this week who asked me about my name called back.  Now today is Friday and I'm going in tomorrow for the MRIs...she called me back TODAY and said, "now there is a $350 patient responsibility for these procedures" *yes i already know, this is only the 3rd call from u people in 5 minutes*

Chick: how are u going to pay for that

Me: *not that i think that it's any of ur business but*Ahm...my credit card...

Chick: So would u like to go ahead and do that now??

again...is she serious???  Why the hell would i pay for a procedure that i haven't done yet???  these people are insane!!

Me: Can't i pay tomorrow when i get there?

Chick: oh yes, i'll just update ur file...

Oh yes u will!!!  WTF????  these people have me constantly using foul language...really????  who the hell pays $350 for a procedure that hasn't been done yet????  Am i the crazy one here?  

Really????

Being sick is a helluva ting...My MRIs are scheduled for Sat afternoon.  I'm assuming that the entire process should take about 3 hours - UGH!!!  i can think of lots of better ways to spend 3 hours..at any rate...

The hospital called me to pre-register, so i'm talking to the chick and she's going down her list of questions.  Here is an snip of the conversation:

Chick: What's ur last name

Me: Samuel-O'Brien (1 thing people up here just DON'T get is the concept of a hyphenated last name...it's something that i will NEVER understand and it pisses me off to no end, but it's something i have to deal with EVERY *^%* time i'm asked my name AND of course, everyone thinks i'm married)

Chick: O'Brien?

Me: No...Samuel-O'Brien; it's hyphenated.  (If i'm in a good mood, i will say that it's hyphenated the 1st time i'm asked and by this time (EVERY TIME), i have attitude)

Chick: Is that an adoptive name, a legal name what?

Me: It's MY NAME!!!

WTF?!?!?  Was she really serious?  Was she kidding me???  I think that by the time i answered that question, she realized that I was pissed off and said that it was just an additional question that came up after she put in my name...I'm sorry, i really didn't care at that point, i was just insulted that she had to ask that question afterward.  What kinda stupid ass question is that?????

Anyhoo, at the end of the call she told me that someone else SHOULD call me to tell me IF the insurance covers the procedures and how much my deductible and co-pays are.  I called them back this morning to find out if that has been done yet and the chick said, "they'll call u and let u know."  I am yet to get a phone call.

I have no idea what my out of pocket expense is going to be...I'm taking bets on how much it will be and if i'll know PRIOR to Saturday when I'm at the registration desk.