"You are a Nightmare"

That's what the nurse who told me about the port said to me last week Friday.  LOL!!!  She's an IV nurse; she normally gets it on her first try, but someone else usually has to call her over...Friday, they had to get 4 vials of blood for all the tests to be performed and as usual, the "molasses that flows thru my veins" had to be coaxed out -

• i had to let my hand hang naturally
• the needle had to be pushed in and drawn out (not all the way) a few times,

...and after all that, she didn't even get 3 full vials!  Steups!  By this time, the 1st chick was fed up (she knew i was also in pain), so she called over the IV nurse and as she walked over, she looked at me, sighed and said, "u really are a nightmare".  Of course that sparked ah set of jokes about their groaning on the Friday that they see me walk in, "oh geez, here comes Stacey - lemme pretend to be busy, someone else will get to her" etc. etc...

LOL!!  Who knew that the infusions could have turned out to be happy happy times :-)

The Formula

it only took 8 months...but i think i've finally figured it out.  I always try to drink at least 6 glasses of water a day - i tell everybody that the only things that i drink are water and alcohol :-).  Anyhoo, so 6 glasses a day, so i figured i (my veins) was well hydrated.  WRONG!  obviously something wasn't right because i would always have to get stuck so many times on infusion day.  but...i think that i've figured out the right formula....

I actually need to drink about 4 glasses the NIGHT before and then 6 more the morning of!  I did that the last 2x and there was no drama each time -the vein popped right up and blood was flowing ( ah lil slow, but that's beside the point).

4 more shopping days before Christmas!!

Today's Post Brought To U By The Number "1"

well wouldn't u know it...

Friday was my infusion (time really does fly) and guess how many times i got stuck?  ONE!!!!  she did it in 1 go...who woulda THUNK it!  I certainly didn't think it was possible after all my experiences so far.  AND, i think i've also discovered the most comfortable position too.  I think i've mentioned before, i would have never thought in a million years that i would entertain the top of my wrist (that nice bony part) - but there is the most comfortable - i can bend, move my hand freely without any issues.  I sit there for about 2 - 2.5 hrs easily so it's good to be able to move my arm comfortably.

Still don't know what, if anything, these needle pricks are doing anything for me - but hey, i guess i'll keep enduring them for now.

#3

I'm a PRO at these infusions now.  #3 was last week Friday - everything went well; no worries, stress nothing.  I fell asleep while it was doing its thing and I even went out later that nite!  Of course, the head nurse (i'm a problem child, so she is the only one who takes care of me) still hasn't figured my veins out...but this time i only had to get stuck twice as opposed to 3x the last time.  It's amazing the places that they go into as well - i woulda never thought that i would actually entertain using the bony side of my wrist!

I still can't say if the medication is working or even doing anything...but the good news is that nothing is getting worse and nothing new is happening.  I also confirmed without a doubt on this last visit that i am anaemic.  I would love to know how that happened all of a sudden and i can't blame the Tysabri because my iron started getting low before i started on it.  I haven't experienced any of the classic reasons for iron deficiency - major blood loss being the most significant - and there really isn't any explanation for it, but hey!  i'm dealing with it and it's not such a major issue to lose any sleep over.

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.

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

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)!!!