:-) 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.