Thursday, February 3, 2011

How I See It...

Oh boy where to begin. Ok let me first get this out of the way. Yesterdays thread on CWD regarding
JDRFs new direction was appalling. Not all but most
posters were insulting to others, degrading JDRF and in my opinion disrespectful to PWDs.

(I WARN YOU, THIS POST IS A BIT SCATTERED. WE ARE BATTLING CONSTANT LOWS AND IM TIRED. BUT NEEDED TO SAY THIS.)

I was on that thread. Did ya see me? I was "the left wing radical who is implying theres a conspiracy within the FDA and Big Pharma to keep the cure away from us". Yup. I said that. I can say whatever I damn well please. I never put anyone in the DOC down while doing so, so why did it bother them? I dont know.

This is how I see it. JDRF raises money for a cure, for research in that endeavor which also includes new advancements to better the quality of life until we get there. Amen! Thats a wonderful thing in MY eyes. I dont ever want Justice to feel because there isnt a cure his life is shit, his life isnt worth living or isnt as good as it could have been.

You all know my work with JDRf. My love and passion for the organization. They have been a second family for us here in Vegas and I will continue to support them as they do us.

Now Im sure you are curious "what conspiracy Lexi?". Well...Big pharma makes a shitload of money off of our childrens disease right? Thats not something new. Well I believe, and maybe I watch too much Michael Moore, the FDA and CDCs pockets are getting fatter too. No not legall, under the table, corrupt. So many drugs on the market that have a side effect of death yet they exist. Why? Cause there is money in them. For the Diabetes community that money is in ALL the supplies we need. So in a nutshell I believe thats part of the reason we have yet to see a cure.

Now the other side of it. Its hard! Not only must Islet cells be regenerated they need to figure out how to keep the immune system from attacking them again!

So what do we do? Do we put all our hope in a cure that my friends Sarah, Scott, Leann, and Kay were told was coming when they were kids? Or do we split focus and try and better the quality of life with diabetes? You know my answer. I guarantee you ask any mother who lost their child to type 1 if they could have their child back even though there is no cure, they would not even hesistate! Or the man who lost his eyesight.

Yes type 1 can take lives and cause complications. Yes I want a cure more than anything in the world. Wait no pause that. I want a cure but more than anything I WANT MY SON ALIVE HAPPY AND HEALTHY DIABETES OR NOT.

Another upsetting point was that some were implying our kids need a cure and why was JDRF focusing on adults too. Well without getting into that, or using obscene words Id like to share MY vision of the day the cure is "given" out.

Im on a line. A long one. Filled with children of all ages, adults of all ages, people of all creeds and financial statuses. Im standing in line with Laura whos lil Nate has a bag of buttery goldfish he will devour once hes gotten his turn. Joe and Reyna are talking about the hours of endless skating they will do, Justin and Caleb have decided we should hit a bakery that of course has peanut free and gluten free for Sugar and Cam. Kacey is helping keep the lil ones calm, Sweetpea and Lovebug are playing pattycake, J, B, and L are talking Meris ear off with excitement.

Grace, Sugarboy, Maddy, and all the other D fams I love are there too!

Wait. Wheres Justice?! Well hes right behind me with Scott, Sarah, Kim, Crystal, Susan, Scotty J, AnnaZ George, Cherise, Kay, Marcy, and Leann (and the other boatload of PWDs I love). They are having some sort of pow wow. Hes trying to convince them when we are done here to come to Vegas to celebrate! "Guys!! Buffets!! No counting carbs!".

See I dont see a cure just for our kids, but for everyone. We are in this together. Period.

We need to see how blessed we are. We have access to insulin. People in 3rd world countries are dying because they dont. People here in our country are without insurance and have to beg and steal for insulin or strips. I am no fool. When a cure comes people like me whos child is on Mediciad will not be able to afford it. So what I give up hope? No. We keep on doing what we are doing. We advocate and support each other. We help those who cant afford the life saving juice we take for grantide.

And we keep praying for a cure. Hell yea!


Cure or not we keep going. Let our kids know life is good!

Diabetes be damned.

23 comments:

FatCatAnna \\^^// said...

WTF? There's a pow wow party happening and I'm not invited - this kitten is crying into her mittens ---- KIDDING! Though one day - as a kid at heart - would love to come to Vegas and celebrate with you and Justice (am thinking of renewing wedding vows with Elvis - wanna be my bridesmaid ??).
Anyhoooo, I read all 31 pages on CWD - and was just blasted away with how things all got so crazy. I knew that if I put in something - it would be taken completely the opposite. You did a good job there Alexis - on your cell phone to boot as well - at getting your thoughts out there.
Hoping Justice is doing ok today with BG's - I hate HATE - lows - it drains the energy out of not just us that are suffering thru' it - but the ones around us that have to help us thru' it!
This cat is saying meow - flinging on my crusader cape - and flying off into the air (NB: I clipped my claws today - so I won't scratch any furniture, etc. today).

Kim said...

That's a "pow wow" I'd love to be a part of. :)

Great post, Alexis.

Donna ((Sweet Momma)) said...

YES!!!!!!!!

THANK YOU!!!!

I love your vision of all the kids and adults in line... I love your vision of their interaction with each other. Your vision of the FAMILY that we all are.

PERFECTLY written... Beautifully said, Lexi.

AmyK said...

I love your vision and your passion!

Crystal said...

Pow wow with You in Vegas!! Hells ya, LF! :-D

I'm with ya. I want a cure for All, all people, all types.

In the meantime, we All live with Diabetes Every Single Day. Improvement on How we do it? Amen Amen AMEN!

Deanna said...

I'm not privy to the thread you are referring to, but I don't see how anyone could argue your vision. I'm 100% with you on that!

Jaxson and I are in that line too.. excited about uninterrupted sleep and not being told "no" to food because of high bg. :)

Lorraine of "This is Caleb..." said...

Peanut free. :) Hugs.

Penny said...

I'm right there in the line with you. Diabetes be damned is right. Everyone can argue, I am getting on with the business of living my one wild life. I don't have time for the negativity and cruelness, there is too much life to be lived, diabetes or not.
Amen sister!

Penny said...

I'm right there in the line with you. Diabetes be damned is right. Everyone can argue, I am getting on with the business of living my one wild life. I don't have time for the negativity and cruelness, there is too much life to be lived, diabetes or not.
Amen sister!

Reyna said...

Welp, I am crying...tears sliding down my cheeks, because I can actually visualize all of us in the line. WE are FAMILY. I hate that some of us are "divided" right now.

This is a fantastic post Lexi. Thank you for writing what I am thinking so beautifully.

I heart you. How are Justice's lows?

Jen said...

Well, now ya made me sniffle a little too. I ducked out of reading the thread around page 10, because I didn't wanna get sucked in and tempted to respond. Thanks for your level, balanced, positive attitude. And your love for all of us PWDs, of all ages. And for your determination that J's life be wonderful no matter what challenges fly his way. <>

Renata said...

I'm with Anna...we wanna go to the Pow Wow!

Awesome post...wasn't scattered at all. The whole thing is rediculous.

Regoddamndiculous

Wendy said...

Gluten Free!!!! HOLLA :)

Little sniff and trickle over here.

Just wanna say that the PARTAY in that line would be OUTRAGEOUS :)

And, ya know what? Each of the peeps who sit on the other side of the fence...I'd be living it up with them too. We are UNITED. That should never falter.

Pray for those babies whose families must choose between food and insulin. Pray for them hard. I do not believe ANYONE can be cured until EVERYONE can access the insulin they need to survive.

Jess said...

Lexi-

You know how much I adore you!

It means so much to have all these parents of CWD standing with us PWD. That's what made me so upset about the thread. It felt like oh, you grown PWD are used to it, so you don't want a cure. That's totally not it!

Thank you, thank you, thank you! And cure or no cure, we need that pow-wow!

Nikki of Our Diabetic Warrior said...

Beautifully stated! I'm so blessed to have all you d-moms as part of my family!

Scott Strange said...

And that is why Justice is a lucky young man. I hope you realize how much this means to all of us out here.

Laura @ Houston We Have A Problem! said...

Lexi - this is the best post i have EVER read. #fosho

I love you with all of my heart - you and your sweet family.

I see us there - I see it so clearly. What a joyous day! In line all of us!!

And you know what --- I think Nate and I will let Scott, Sarah, Kim, Crystal, Susan, Scotty J, AnnaZ George, Cherise, Kay, Marcy, and Leann take our place in line. They need this cure just as much if not more than my Sweet Baby Nate.

My cousin, Brian is T1D and at the age of 41 --- he needs a damn cure too. If not a cure then hell yes these children and adults need the tools to keep on living healthy, complication free lives!!!!

For the record I agree with the big pharma companies too - - - when Nate was dx about a week I had a D-Mama of a teenage girl tell me that and it pissed me off --- Nate was newly dx so I was like WTH? But now - - - well, now I know!

I love you - did I already say that?

You just texted me - I better go see whatcha sayin!

PS - if the cure costs money - you know I would find a way to hook us both up!!

Scott Strange said...

Thanks Laura... but I'm going to sit at the back of the line by the exit. Watching the faces of those coming out that door would be something to see. The 8th Wonder of the Modern World

Toucan Scraps said...

I'm not holding my breath for a cure, while we wait I want the best that life can give for my diabetic children (yes I've got more than 1). SO that means an insulin pump rather than injections, a finger pricker that doesn't hurt as much, test strips that are reliable and take a few seconds. I know adults who can tell me about test strips that were at best 20% reliable and took 15 mins to get a result and needed a razor blade on the finger tip to get enough blood. I want the best for my kids now, and a future for them now. And hope and pray for a cure in their lifetime. I want the research into better tools and treatments to continue alongside the research for a cure.

Jen said...

Amen!

Amy said...

I can't say much because I promised myself I would let all this while bit of news and action settle in my heart for awhile before I had a reaction . . . . BUT . . . .

SAY IT SISTAH!!!!!!!

Shhhhhh. Don't tell anyone I piped up ;)

'Diabetes be damned' = you got it

k2 said...

I'M IN! And I want a cupcake buffet, right next to the line of brickovens that are continually being loaded with pizza and ginormous loaves of bread!!
And one more tbhing, I LOVE YA!!!
kelly k

Anonymous said...

I agree with JDRF's new focus and I applaud it. What would I give for an insulin that would greatly reduce the risk of lows, allowing us to dose more aggressively for highs? Implantable or noninvasive cgms? Islet sheet transplants without immunosuppressants necessary? These advances must become a reality and long before a cure is found. And our young teen, soon to be an adult, will be considered when JDRF funds research so that she can be safer as a young adult living on her own. No, we must not give up working to fund a cure. But the reality is, unless some accidental miracle occurs (and accidental miracles have occured in science), curing the autoimmune component of Type 1 is a long way off. To put all our eggs in the "cure" basket is incredibly short-sighted. The rude posters on CWD are the same rude posters who attack no matter WHAT the topic. And they are not stopped by the moderator; the moderator does pull the whole thread sometimes or locks it. Personally, I don't think those parents are against the Type 1 adults; they know their children will be adults one day. I think they are holding on to the idea of the cure being available BEFORE their children reach adulthood. Thinking if they focus all of their energy and effort, financial aid on that one goal, it is more likely to be achieved than if you split your energy in many directions. Which is very easy to believe if your child is two or five (and parents work very hard to keep their kids safe and most can do it), but difficult to believe if your child is twelve or fourteen. I am sorry you were disrespected on the thread; you tried your best... And you have a right to your opinion re conspiracy theories and FDA. I do believe some FDA officials could take bribes by big Pharma to approve a drug. Makes perfect sense to me. Of course, no proof this this occurs but a lot of unsafe drugs do slip through the FDA; no question.

Celebrate With Us!