Author: Stax

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!!! 🙂

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