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)!!!

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! 🙂

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