My Tysabri Diary... alllllllllllllrighty then!!!
When I woke up today, after my 5th infusion yesterday, I felt like taking on THE WORLD! Of course, I can't, but I felt like I wanted to - God I LOVE these first few days after my infusions - what a Rush!!! I feel like I've regained my old self - my spirit for living - once again, that my disabilities keep weighted down. Heck - I even beat my caregiver Ray in starting my physical therapy exercises! He was yelling, "Slow Down Woman!" And I yelled right back at him, "Keep Up Slow Poke - Whatcha Waiting For - Christmas?!?!?" - LOL
I can move my feet again, (not much - but a little bit) and can reposition my legs once again (a little bit) without using my hands! I can even hold my coffee mug (it's BIG and HEAVY) and take a sip from it without holding on to anything and not falling over! Woooooohooooooo!
It's amazing what we all take for granted in our lives...the simple things - I'm loving being able to do the simple things again - and I want more - I'm gonna walk again dammit!
I feel pretty again, even though I'm not anymore, but THANK YOU TYSABRI!!!!!!!!
Okay, I'll shut up now, (heehee)
(((hugs)))
Love, Lauren :)
A very proud member of http://www.mspatientsforchoice.org/
When I woke up today, after my 5th infusion yesterday, I felt like taking on THE WORLD! Of course, I can't, but I felt like I wanted to - God I LOVE these first few days after my infusions - what a Rush!!! I feel like I've regained my old self - my spirit for living - once again, that my disabilities keep weighted down. Heck - I even beat my caregiver Ray in starting my physical therapy exercises! He was yelling, "Slow Down Woman!" And I yelled right back at him, "Keep Up Slow Poke - Whatcha Waiting For - Christmas?!?!?" - LOL
I can move my feet again, (not much - but a little bit) and can reposition my legs once again (a little bit) without using my hands! I can even hold my coffee mug (it's BIG and HEAVY) and take a sip from it without holding on to anything and not falling over! Woooooohooooooo!
It's amazing what we all take for granted in our lives...the simple things - I'm loving being able to do the simple things again - and I want more - I'm gonna walk again dammit!
I feel pretty again, even though I'm not anymore, but THANK YOU TYSABRI!!!!!!!!
Okay, I'll shut up now, (heehee)
(((hugs)))
Love, Lauren :)
A very proud member of http://www.mspatientsforchoice.org/
posted by Lauren @ 3:41 PM
8 Comments:
At 8:28 PM,
Unknown said…
Lauren,
Thank you for all of the hard work that you are doing! The KSL story was about me. I asked myself what can I do with this situation and getting a news piece seemed really doable.
It would be nice to chat with you offline, but I've not found a way to get you my contact info. The County domain is slco.org, my account is dfranchow. I already have so much junk email scrubbed this shouldn't hurt too much more if people use it for bad.
Thank you for helping to make Tysabri available for me. My wife and I are in disbelief after the past year of so many setbacks. After doing the story I was concerned that I might have misled or overstated, but after reading my past year journal - it was not an overstatement.
I do cherish every moment, to the point that going to bed is becoming more difficult in not wanting to close another day and scared that I might wake to find that it is over.
Although the story is flawed, I am seeing some good dialog building. Perhaps people will dig more than usual and actually look up Tysabri and understand it more. You posted the name of the wonderful website - mspatientsforchoice.org. Finally, I have been made aware of you, and who knows what doors will open now.
Thank you again,
Darren
At 6:35 PM,
Anonymous said…
Hey Lauren! Hope you are still energized by the time you read this. It's so exciting to feel your zest for life! My sense is it can only get better for you; your abilities to move will improve as the Tysabri swirls around inside you. There's no holding you back now.
Daughter Sarah will get infusion #2 on 2/27 so we'll be waiting to see her as energized as you as the months go along.
As always,
Deb
At 12:07 PM,
CC said…
Lauren, Do you think you would have considered Tysabri if you were still in the early stages of MS? I am currently on Avonex and am having miserable side effects. I have not approached my neuro about Tysabri but always think that if I get worse, that would be my choice. Then again, I think....why wait!? Would love your input.
At 1:26 PM,
Lauren said…
Hi Darren! Thanks so much for your comment on my Blog, and the admin of our website sent me your email. You're so very kind and your wife is one lucky woman :)
I haven't had a chance to reply to it yet, as I've been extremely busy lately answering voluminous Tysabri email questions from many MS'ers all over the world (but mainly here in the U.S.), helping MS'ers on the various MS Message Boards, keeping up 3 Blogs I have, working on a possible MS/Tysabri story myself, working with our website to resolve various Tysabri reimbursement and co-pay issues, trying to keep in touch with my MS & non-MS friends, correcting various media articles & websites re: Tysabri info, and helping others understand and get through the TOUCH progam - just to name a few of my daily activities (laughing).
But I promise Darren, I'll write soon - I'm SO happy you're doing well on Tysabri! Wooohooo!
Lauren :)
At 1:39 PM,
Lauren said…
Hi Deb! Awww, I'm SO happy for Sarah... I'm praying the second week after her 1st infusion is as glorious as mine was in early 2005.
I'm keepin' the faith for all of us Deb..... by the way.... does your home need a fresh coat of paint? (<--cracking up!).
Take good care now, Lauren :)
At 2:29 PM,
Lauren said…
Hi there CC! "Lauren, Do you think you would have considered Tysabri if you were still in the early stages of MS?" You betcha! I would have been all over Tysabri like flies on ummm, errr, well you know (wink)
"I am currently on Avonex and am having miserable side effects." Avonex - ugh - the pits! Been there, done that CC - I did Avonex for 6 months and wished someone would shoot me with a .45 Calibur gun the day after each injection - so I hear ya all too well (biting lip). (((special hug for you CC))).
"I have not approached my neuro about Tysabri but always think that if I get worse, that would be my choice. Then again, I think....why wait!?"
Awww honey - As one of the very knowledgeable neuros of the Advisory Panel to the FDA pointed out at the Tysabri hearings in March '06..."Time Is Brain". My bad relapse (that left me w/c bound) hit me out of the blue without Tysabri's superior efficacy of 68% to protect me from it. The Tysabri Label is clear: "TYSABRI® is [for] ...patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
If my neuro wanted me to wait, I'd ask her/him point blank, "Wait for what??? For me to get worse??? And possibly be left with permanent damage from a relapse that hits me out of nowhere?!?!?"
If she/he said "yes, wait", I'd say to them very loudly so their MS patients in the waiting room could hear me (heehee), "It's MY body, MY disease, MY life and my MS therapy med should always be MY choice...and then I'd promptly find a new neuro, never look back, and say a HUGE prayer for their remaining MS patients.
I know, I know - my bad (lol)...keep me posted CC (I wonder if I scared CC away? gulp!)
Hmmmmmm, ah well - ((((((hugs))))))) to all, Lauren :)
At 9:28 PM,
CC said…
Lauren...Thank you so much for the great feedback! It's really what I was hoping to hear. I was on Rebif for two months prior to the Avonex and thought I could handle feeling crappy once a week as opposed to all week with the Rebif. I will call my neuro this week!! I started a blog in Sept. reversems.blogspot.com and looking back, so much of it is dedicated to side effects. I am ready to move on! PS...you didn't scare me, you inspired me.
At 12:30 PM,
Lauren said…
Courtney - I skimmed your Blog, it is grrrrrrreat! (<-using my best Tony The Tiger voice-heehee). You might want to check out my comment ;)
You're so sweet to post a few of my links there - keep me posted on your upcoming neuro appt! Take good care,
Lauren :)
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