Tag: pills pills and more pills

so…

i’ve mentioned before that i have alarms going off at various times during the day as reminders to take my DRUGS.  those who are around me regularly know exactly what time it is when each alarms goes off because they are as used to the things as i am…

2 Saturday nites ago, I went to a birthday party.  It wasn’t just a party – it was a 70th birthday so there were some formalities and dinner prior to the party part getting in full swing.  During that time, there were a few speeches, a few prayers, couple performances and just a celebration of the person’s life to that point – all his siblings were in town, so they were reminiscing (u get the picture).  did i mention that we got there around 7:15?  so anyhoo, everything started by about 7:30ish and the evening was underway…Now,

  • do i always remember that alarms are going to go off at specific times?  no! 
  • is my alarm a nice soothing one that only i might hear? no!
so in the middle of someone’s speech, at 8:00, the shit goes off!  Now the alarm sounds like a firetruck when it’s going thru an intersection (that kinda noise pollution kinda sound)  – a kind of “BARP!!” “BARP!!” “BARP!!” (it just went off as i wrote that!)…I mean i have to be able to hear it afterall…of course, as i took my phone out of my clutch to turn the thing off, it got even louder!  it was a little embarrassing, but hey – i have to take my meds… 🙂  Afterwards, i was talking to K2 and he said (he was sitting across the hall at another table) that some on his table snickered and had to explain to the others (who were a little appalled), “yeah, that’s just Stax – she has to take her pills” 

AARRRRGGGGHHHHH!!!!

I hate Multiple Sclerosis! 
There!  I’ve said it loud and proud!!  so i went to my neuro on Tuesday and what did he tell me?  more of the same bullshit “Tysabri needs at least 6 months before we start seeing any effects”, “we have to give it time”.  He also said that treating the MS is about trying to find that balance – finding the right drugs to help but not so much that the side effects have u going out of ur mind, exercising but not so much that u get too hot and start to overheat and feel terrible, eating well but not so much that you end up depriving ur body of essential nutrients that it needs – WTF!??!  is it really all about trial and error???  ARGH!!!!
Anyhoo, so on that note, i’ve added yet another small white pill to my collection.  this one is even more powerful than the others because it’s 4mg and i only am taking 1/2 – and again, i was the drowsiest i’ve ever been in my life after i took the first one.  The difference with this drowsiness was that it only lasted about 3 hrs not the entire day like the last time – go figure.  I hope that this passes soon because it’s a drowsy, drunken feeling that I’d rather not experience again (the last time i was only drowsy the 1st day).  This one is also for Spasticity which is what he suspects is causing my walking problems these days.  Good news/bad news.  Hopefully I won’t be as stiff as I have been but not so much that my legs feel like jelly!  Shit, we all know what that means – more falling for me – WHOOHOO!!!
I hate having MS!  I’ve said it again – loud and proud.  what i hate about it the most is all the unknowns:
  • Don’t know what causes it
  • Don’t know what cures it
  • Don’t know y u have it
  • Don’t know what course it will take/how it will affect you
  • Don’t know how long you will experience what you are going thru right now   
the list can go on…and on and on.

Allright, I’m off my soapbox now 🙂

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!

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!!!

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