Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Monday, January 29, 2007


My Tysabri Diary...

I'm feeling very happy, although philosophical, today (this is always a "dangerous" combination concerning me, when I combine the two-lol).

For the past year, I have been trying to reach a conclusion regarding the following: People often ask me why I am such a believer in Tysabri, others question me as to whether or not I work for the drug companies that provide Tysabri for us (laughing - which I don't), others ask me why I'm such a strong patient advocate (more like bullheaded/stubborn-I admit it), while others
comment on my attitude of hope even though I'm not receiving the dramatic results (yet) of symptom improvements from Tysabri that some other patients are.

I'm not sure a simple conclusion exists, so I'll just hypothesize outloud (lol) ..., but first, let me share this recent comment left on my Blog by a extraordinary lady (sweet, kind, caring, intelligent and encouraging are just a few of her qualities) that I have come to recognize and become acquainted with through her emails:


At 5:06 PM, Anonymous said…

I am so admiring of your positive attitude and your well-placed hope in the future. I made a comment some months ago, saying my daughter was to be considered for Tysabri after the birth of her baby in October. Her insurance was not approved until last week [yes, it took a while and some writing to our state's attorney general] and she now is scheduled to receive her first infusion on Friday! She is excited and nervous, but very much hoping to reap some benefits. She is not obviously disabled but had been having breakthrough attacks on Copaxone and also attacks while she was pregnant....a small percentage do, we have since been told. So, Lauren, we are hoping like you and paying attention to your wonderfully modeled attitude.

I wish you continued improvements [big ones and little] through the months. Many of us readers obviously pay attention to your words. Enjoy your mild weather and sunshine and think of us up in the snowbelt.

Deb

I am truly humbled by Deb's words, and absolutely delighted and shocked that others actually pay attention to my words (other than the jerks/creeps that reported mis-information to Biogen) from my Blog. Thank's so much Deb...you no doubt must be an inspiration to your daughter and one which she probably aspires to model herself after (smiling).

Okay, now on to my silly, philosophical conclusions (I guess this is entertaining for some of you viewers, eh? LOL)...,

1. People often ask me why I am such a believer in Tysabri...my conclusion: This is due to my firsthand experience with Tysabri (
especially from the dramatic improvements I had on it in 2005 with just 1 infusion)...nothing in this world will ever change my opinion of Tysabri - ever, until a cure is found for MS (which probably won't happen in my lifetime, but for the younger MS patients, they won't have to suffer years of relapses and accululating disabilities with Tysabri now here to protect them until that cure is found);

2. Others question me as to whether or not I work for the drug companies that provide Tysabri for us...my conclusion: Nope - I don't (laughing again), but I understand why some might think that, and actually, I see their remark as a compliment...I have been researching and following Tysabri (formerly known as Antegren) since 2000, so I have accumulated quite a bit of knowledge (also from listening to the brillance of others) regarding its properties and mechanism of action with regard to MS, including the probable/possible use of Tysabri with other auto-immune diseases such as Crohn's, Rheumatoid Arhritis, Lupus, etc.

3. Others ask me why I'm such a strong patient advocate...my conclusion: This is MY body, MY disease, MY life, and therefore I must be MY OWN patient advocate (as we all should)...I am NOT content in having a doctor (or anyone for that matter), take over driving my car (managing my disease) while leaving me in the passenger seat - only along for the ride....NOPE - NO WAY, in my opinion - it is the other way around..., my doctor is MY partner in helping me manage MY disease by listening to me - offering his/her learned advice - my researching it, and making MY OWN decisions that ultimately give ME the opportunity to fight MY disease. He/she (they) are the passengers along for the ride of MY life. :)

4. And finally...Others comment on my attitude of hope,even though I'm not (yet) receiving the dramatic results of symptom improvements from Tysabri that some other patients are...my conclusion: I have always had hope and optimisim, even as a little girl. It's part of my makeup as I realized we have all been given the gifts of Faith, Hope and Love. What we choose to do with these gifts is a Personal decision that each of us must decide for ourselves. Personally speaking, I don't think I could have survived living with MS for 31 years without these gifts in my life, and looking back now, I'm grateful for the decision I made in embracing them instead of rejecting them.

Don't get me wrong...I'm not preaching here as I am not a religous person, but I am a spiritual one. I live my life by choosing to see the glass as half-full, not half-empty (much to my chagrin of realizing too late that my ex-husband of 26 years was the all-time, half-empty glass pessimist). But that's okay, he is someone else's problem now - LOL ;)

Positive = Possibilities...Negative = Nothing....Simple really (Smiling)


I'm off now to do my physical therapy excercises that are strengthening my legs, with the hopes of walking again with Tysabri's help. Darn it, there's that pesky word Hope again. (wink)

(((hugs)))

Love, Lauren <---Grinning from ear-to-ear, ending with a rebel yell of:

Woooooooohooooo!


A very proud member of
MSpatientsforchoice.org

9 Comments:

  • At 4:51 AM, Blogger Vern Beachy said…

    Lauren;

    I am a 42 yr old man who was diagnosed with MS in September of 1998.

    I have been in a wheelchair and using Canadian Crutches to get around. I started Tysabri in November.

    After the third infusion, I can now walk without ANY assistance, I quit parking in Handicapped spots, my voice sounds healthier, my memory and cognition is vastly improved.

    Tysabri, to me, is the closest thing to a cure for MS.

     
  • At 5:32 AM, Blogger Vern Beachy said…

    Here is my story Lauren on FaceofMS website.


    http://www.faceofms.org/index_html.php?action=view&id=3298

     
  • At 7:24 AM, Blogger mdmhvonpa said…

    "others question me as to whether or not I work for the drug companies that provide Tysabri for us "

    LOL! A paid blogger even!? Ahhh, dreams.

     
  • At 10:41 AM, Blogger Karyl said…

    Hi Laureen
    Loved your post. BUT there was one item I must disagree with you adamitly. We will be cured in your (our) life time. I believe we are very close to major break throughs with many auto immune diseases. It will be a great day for millions. That is the day I live for.
    Karyl

     
  • At 7:11 PM, Blogger Lauren said…

    Hi Vern...thanks so much for your comment on my Blog, for your Tysabri Progress Report on our website, and wowsers for your page on the 'facesofms' site too, best wishes for even more improvements on Tysabri!

    Woooooohoooooo! Lauren :)

     
  • At 7:13 PM, Blogger Lauren said…

    mdm,two words....."I WISH"! LOL Take care dude - Lauren :)

     
  • At 7:18 PM, Blogger Lauren said…

    My dearest Karyl, I completely agree with you that a cure MS will be found 'soon', but you forget, I'm an "old fart" LOL

    ((((((hugs))))))), Lauren :)

     
  • At 7:51 AM, Blogger cindy said…

    Hi lauren,

    I get my 2nd infusion on the 16th,
    so far I feel a lot more energy and I am now driving my kids nuts because they are now having a hard time pulling the wool over my eyes. so I think cognitively it has helped. which is a good thing with 5 girls (young teen agers) still at home.

    I have been in a wheel chair for about 6 months, and am excited to finally have the hope that I will not be bedridden before I am 90.

    Hope you are doing ok
    cindy

     
  • At 5:38 PM, Blogger Lauren said…

    ((((((cindy))))))) "with 5 girls (young teen agers) still at home", YIKES! (Hands Cindy her "WonderWoman" cape - want my matching tights? (heehee) take care girl ;) Lauren

     

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