Living With MS

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

Sunday, June 17, 2007



My Tysabri Diary...Happy Father's Day and Happy 4th of July!

"You never said I'm leaving, You never said goodbye
You were gone before I knew it, And only God knew why
A million times I needed you, A million times I cried
If Love alone could have saved you, You never would have died
In Life I loved you dearly, In death I love you still
In my heart you hold a place, That no one could ever fill
It broke my heart to lose you, But you didn't go alone
For part of me went with you, The day God took you home."

"When I was:
Four years old: My daddy can do anything.
Five years old: My daddy knows a whole lot.
Six years old: My dad is smarter than your dad.
Eight years old: My dad doesn't know exactly everything.
Ten years old: In the olden days, when my dad grew up, things were sure different.
Twelve years old: Oh, well, naturally, Dad doesn't know anything about that. He is too old to remember his childhood.
Fourteen years old: Don't pay any attention to my dad. He is so old-fashioned.
Twenty-one years old: Him? My Lord, he's hopelessly out of date.
Twenty-five years old: Dad knows about it, but then he should, because he has been around so long.
Thirty years old: Maybe we should ask Dad what he thinks. After all, he's had a lot of experience.
Thirty-five years old: I'm not doing a single thing until I talk to Dad.
Forty years old: I wonder how Dad would have handled it. He was so wise.
Fifty years old: I'd give anything if Dad were here now so I could talk this over with him. Too bad I didn't appreciate how smart he was. I could have learned a lot from him."
Authors Unknown

My father died when I was very young, so I can't say a lot of wonderful things about him because I can't remember if there were a lot of wonderful things about him. I do remember a few good things, but I also remember some very sad times when he was abusive towards me, my 3 sisters and my mom.
I learned later that it was the bottle that made him so mean, but nevertheless, I forgave him.... did his alcoholism rear its ugly head due to the pressures of raising a family? Providing for us? Was it something from his own childhood that made him drink? Would he have changed if he grew older? These are questions I cannot answer... at my age now, I'm sure I'll find out the answers soon enough.

The funny thing is, growing up without a loving father in my life, made me more patient and tolerant of others' insecurities, frailities, and shortcomings (to a point). It has also made me richly appreciative of kind, good friends and the little things in life. Perhaps this was meant to be after all.... perhaps not. I don't rightly know for sure. It is what it is.

What I do know is that we need to love the ones we still have with us because we never know when they're going to be taken from us..., and that includes people that we love which might inevitably become Alzheimers patients, lost forever to the disease.

Thank God we have hope in AAB-001, currently in Phase III clinical trials... Happy Father's Day to all the loving fathers out in cyberspace - including grandfathers. You are a special breed indeed.

(((hugs)))
Love, Lauren
A very proud member of http://www.mspatientsforchoice.org/

6 Comments:

  • At 6:52 AM, Blogger mdmhvonpa said…

    Thnx kiddo (internet daddy)... hope all is good for you too.

     
  • At 11:33 AM, Blogger Lauren said…

    Hi md...I hope your FD was fantastic.

    Ttylater, Lauren :)

     
  • At 6:46 PM, Blogger Merelyme said…

    i too lost my father...he died of cirrosis of the liver when i was just four. i often wonder what my life would be like now had he lived.

    thanks for sharing your thoughts and story with us.

     
  • At 7:44 PM, Blogger Lauren said…

    Hi merelyme - I'm so very sorry for your loss - please accept my heartfelt sympathies and condolences...too little too late, eh? (sigh)

    My father died of bladder cancer...I was expecting a dx of cirrosis of the liver for him too, (shrug) oh well.

    I just read through your Blog real quick...great writing - I noticed you were having some breakthrough disease activity while on Rebif (more eye problems) :(

    How's Rebif working for you? (I call Rebif aka Avonex with an Attitude - heehee)

    I also noticed your question: "who would you have play you...in your lifetime movie of the week?"

    Hmmm, I'm thinking maybe...Sandra Bullock to play me. Yeah" LOL - wouldn't that be a hoot? ;)

    Take care dearheart ... Lauren :)

     
  • At 9:34 AM, Anonymous Anonymous said…

    Did you say you're an Elan investor? Since Elan owns 50% of Tysabri, what is the connection here? I realize you're taking Tysabri, but if your Super-Support of Tysabri is because of this connection, it's not fair to all of us MSers.

     
  • At 5:06 PM, Blogger Lauren said…

    To anonymous... yes I did say I'm a small investor in Elan, so what? I have also had MS for 31 plus years, so what?

    I have been a Tysabri supporter from way back, even as far back as when it was formerly called Antegren, why?

    Because Tysabri is the most effective MS therapy available for us to date in over a decade.

    I happen to believe in Tysabri with all my heart and soul because I've been studying this drug since early 2000, and in 2005, I experienced firsthand the tremendous benefits/results from its superior efficacy of 67% over the existing ABCRs, and put my own health and beliefs in Tysabri on the line, along with many other MS patients across our great Nation, in order to testify before the FDA AC back in 2006 in an effort to bring this drug back for those of us who want it and need it to treat our MS.

    And you prejudge me by assuming that I'm only a Tysabri supporter because I'm an investor in Elan, and by falsely assuming so, you indicate that it's not fair to all you MS'ers???

    Let me set you straight... the "connection" you make reference to has to do with Biogen taking credit for Tysabri, when in fact it was Biogen that combined Avonex and Tysabri (one of the drug interactions which caused PML) - due to greed, it was Biogen that voluntarily removed Tysabri from the market back in 2005 - allowing MS patients to suffer more relapses (including me, who suffered a severe relapse in June 2005), it was Biogen that kept pushing for combination therapy at the FDA Tysabri hearings in 2006, and it was Biogen that was ultimately responsible for keeping this phenomenal MS medication away from us for over 18 months... yet it's Biogen that wishes to take all the credit for Tysabri?

    And now you're questioning my motives for supporting Tysabri by trying to falsely lay a guilt trip on me for being honest on my Blog and by sharing my MS and Tysabri experiences with others?

    Sorry, I don't think so.

    I hope and pray you never have to suffer as many of us MS'ers suffered without Tysabri.

    Lauren

     

Post a Comment

Links to this post:

Create a Link

<< Home