Category: Random Thoughts

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!”

Follow Me

Get the latest posts delivered to your mailbox: