Saturday, April 04, 2009

Sunday Scribblings - Celebrate

What am I celebrating in my life right now? That I am alive, pain free and in a very good place in my life. I feel an awakening deep inside of me that is exciting and full of possibilities.

I had what I thought was a follow up visit with my new Neurologist. What we discovered when we arrived was not just my doctor, but a whole team that will be dedicated to my care. Can you even imagin this, all in one clinic? UC Davis now has a new ALS clinic and I am a part of it

The ALS association was there and I was allowed to offer up ideas to make next year's ALS Walk bigger and better( media,media,media). I was able to offer myself in any capacity, as a face of ALS. They listened and I hope to play a part in raising awareness. I gave them my blog that shows Sarah's video, made in the UK (link to it is at the end of this post. I wanted them to see what a powerful campaign could look like. I will do whatever it takes to help.

The MDA was there to offer $2000 for a chair if I ever needed one and $500/yr for any repairs. That includes my new computer. Yes, it's here and I will start my training Wednesday. I will be able to blog, voice bank and speak, with just my eye's. It even comes with other voices you can speed up or slow down for that sexy twist. I'll use it on Dave "hey big boy wanna get me a drink sometime" in the sexiest of tones.

They had speech therapy, occupational therapy, hand therapy, psych, physical therapy and Orthotics. We had people in and out of our room for quite a bit. Then my doctor arrived and all I could say is WOW. I have a team that, every 6mos due to slow progression, will give me a better quality of life. That is amazing BUT not everyone with ALS can use this clinic. I plan on addressing that on my next visit. Health care should be for everyone.

This doctor has made all pain and discomfort disappear. I believe in drugs for side effects caused by ALS, but on my terms. Many do not want to take drugs and manage pain in their own way. I will only take drugs at night so I am not drowsy when awake. I'm migraine and muscle cramp free, I still am able to walk due to muscle relaxers at night and I sleep deeply. I'm drug sensitive so he goes slow and listens. I was even able to drop a drug because the new one takes care of multiple issues.

Skin cell research is joining in the race for a cure. Stem cell research has taken the lead but it's a good thing to have another option in the race. Skin cell research would use your own skin cells but the research is farther behind. The most important point here is that there is a race for a cure. Woot Woot! I am living in the present but seeing a brighter future ahead. That is something to celebrate in my book. Hey, if I ever wrote a book my story would get its happy ending after all. :)

Sarah's ALS campaign video: http://www.veoh.com/browse/videos/category/educational_and_howto/watch/v17908360hQ9esDsQ#
http://ambyleigh.deviantart.com/art/Celebrate-75611206
http://sundayscribblings.blogspot.com/

26 comments:

Star said...

All of this sounds very positive and encouraging. It must give you new confidence with such a caring team to support you.

You go, girl!

Hugs to Dave. I forget about giving him a proper shout out and he deserves it. :)

b said...

This just sounds so exciting...a celebration is in order. Have a wonderful week.

b

A Girl Named Me said...

My goodness. Your post gave me goosebumps. So much to celebrate -- for yourself...and for others fighting ALS.

xoxo
AGirlNamedMe

TJ said...

I have grown with you these last few years.. you never cease to amaze me.
I do celebrate ...you and our friendship.
You have taught me much. You have taught me courage...I am thankful...our paths crossed.
( Eat your dinner)
Love you,
TJ

Nana said...

You are such a beautiful, strong person. Your post brought me to tears. I will keep you in my prayers.

anthonynorth said...

And above all this marvellous help, one other thing to celebrate shines out of this post - your optimism. THAT is your best friend.

SweetTalkingGuy.. said...

Wonderful news, this sounds like something to really celebrate!

I'm so happy for you!!

Nancy said...

Fan-freakin-tastic Tammy! This is like a dream come true. I am thrilled to the bone that you have all of these options, and a team devoted to you. AND...they, and many others, are going to learn a helluva lot from you. No matter how things progress, you will always "have a voice".
I am thrilled for you, for me, for everyone this will touch.

Love you,
Nancy

GreenishLady said...

I celebrate YOU, Tammy! This is all so wonderful to hear about. SO wonderful!

gautami tripathy said...

I too raise my glass and celebrate you! Youn inspire me always!

SS: The Red Tent

tamiesling said...

This is such exciting and amazing news!! You are an amazing lady and your attitude and love is helping so many! There will be cure! :-)
Blessings, Tami

Tumblewords: said...

Wonderful news - and surely a cause to celebrate! I'm so happy for you!

Robbin with 2 B's! said...

Oh Tammy, that is so wonderful! I love it that you will have a whole team looking out for you. Can't wait to talk and catch up on things.

Granny Smith said...

Hooray for U.C.Davis! What a wonderful team you are offering to be part of. I'm so happy that you are in a good place - and that your new computer is there as well.

forgetfulone said...

Wonderful!

Jay said...

That sounds just so wonderful! I'm happy for you!

You're right, health care should be for everyone, but it isn't. The new research sounds very promising, I hope they get moving on that. Good to hear you can drop a drug, too!

Kay said...

I am so happy for you. God is good! You are awesome!

Joyce Ellen Davis said...

*Applause*

Becca said...

Such great new advances in the fight, and you're on the vanguard of all them! I'm so glad this resource is available to you :)

Mary Timme said...

A team! What could be better. I wish everyone had one, too!

Lucy said...

Oh This IS reason to CELeBRATE!! YOU WILL have your happy ending sweetie!
I LOVE that you are in such amazing hands and I love that YOU want to make sure others will be too.. YOU GO girlfriend!
It takes the most amazing heart to not just be happy that you are getting what u need but also fighting the fight for everyone out there who also has needs! I LOVE that about u!
Celebrate Celebrate DAnce to the music!!
xoxox

Sky said...

what a fantastic post, tammy! i am so excited for you. i might need that muscle relaxing medication.

Devil Mood said...

This is so exciting! I'm so happy for you that you have the opportunity to improve your life and the life of other people with ALS. The ALS clinic sounds great. I'm confident your work will have major effects in the near future. Keep going warrior :)

emmapeelDallas said...

What a terrific, exciting post! I am so happy that you have a team of doctors and they are so lucky to have you! I know you'll make the walk better than ever. And I'm excited for you about your new computer. This is great news, Tammy!

paris parfait said...

I have been traveling and am just catching up with all this GOOD NEWS!!!! Brilliant! Am so happy to hear all this, Tammy. xoxox

tinker said...

I'm just now catching up with everything online, and I'm so, SO happy to hear about your new computer and voicebank, and your team! Way to go, Tammy!!!
GO TEAM GO!!!!
XOXOX