Oprah and Montel
 

I too would like to write a book about my experiences while learning how to live with TOS and related and unrelated medical problems.

You make great points about the similarities of MS, yet we do not get respect for our conditions. On the contrary. I mean, like we want this to have to deal with. I do feel violated by some. Helped only by a few.

And I've also thought that they don't know how to help us so they try to pass us off onto another field of medicine till we're exhausted at the lack of conformity in the diagnosis and treatment of TOS... but we don't go away.

You are always informative. You have compiled a lot of good information. No doubt you've spent relentless hours searching for answers or solutions or just an understanding. You have my support on your book.

I don't know specifically what to contribute, but I would like to contribute something. It's certainly worth the effort.

Yes, i loved the Oprah show with montel this week-wish i had taped it for my friends so they could see it to better understand what I deal with.
I plan to get his new book, need all the positivity i can get right now!
good stuff-glad to see it:)

I was thinking while watching that there should be a book about TOS specifically, a book of several peoples experiences.

I don't know how clinical you would get.

If it was a "tell your story" type thing.....Lord knows I could write a chapter on how to be ignored by doctors who say it's all in my head and imply I am just a drug seeker

Many of us could write THAT chapter......

Finz- you mean its not all in my head? :p

ok, that wasn't funny. I'm not sure that i'll ever get used to people implying that or implying that i'm just trying to get some meds. *cough* mother-in-law*cough*

I missed that episode of oprah.... maybe it'll be on one of the on demand channels. I like your idea for a book Tam!

I have been sick but have started it. I will ask for voluntary submissions later on if somone wants their experience included.

Love Tam

Hello all - been a long time.
 

I didn't see this episode, but I've wondered for a long time if MS had similar aspects to neuro TOS. I have a neighbor down the street and when we compare notes, we have similarities too.

I've just recently been getting online here and there... have gotten to a place where I am now re-introducing activities that I eliminated to get my symptoms under control (I started walking 3 miles a day last spring - got to get that started again, as I don't go out much in the winter. I even joined a gym, for the water aerobics and hot tub, but nothing much tempts me to go out in the snow :rolleyes:). But I did manage to go back to the shooting range and can shoot a couple of boxes of bullets through my 9mm and not be in pain the next day (I started out with a .22 and worked up to it). Wonderful stress relief!

Santa brought me an iPod touch and I was delighted to find a non-profit dedicated to TOS one day when I was playing around with it. It's called ATOSA - American Thoracic Outlset Sydrom Association. atosa.org Remember back on Braintalk when we talked about doing something like that? Starting a non-prof is such an enormous undertaking, I know I didn't have the energy to even think about back when I first stopped work. But it's a necessary thing to have I think if TOS is ever going to step out of the shadows and have a place at the table in the medical community.

Tam, if you haven't checked them out, it's worth a look. They have a lot of people who've already written their stories and Gail seems easy enough to work with (I'll admit I've been mostly lurking, but want to get more involved as I'm able). Perhaps you could collaorate with that org for your book?

:)

You go LadyParrot. :hug:

I know you don't feel like it. Just think about it in the long term. It's what you need to do now to get away from where you are. It gets a little easier as you go along. It's been rough but I stick with it. I am proud of your efforts and encourage you to keep it up.

I'm going to get out my guns and start shooting too. Thanks for the prompto. Good idea. I used to target practice with a 45 pound compound bow. Would like to get to where I could do that again. It's a goal I reach for. I really enjoyed that.

re SNOW
 

I too can't wait for the snow to go and get walking my doggy again....Marc does it in the winter but I just can't go in the cold...muscles spasm and here it gets to -40Far. so absolutely bloody freezing your (doggy parts) off.

I need to get onto the bike again (recumbent and somewhat comfortable) I do after all need to fit into a wedding dress...which is yet to be purchased.

Life for me sort of stops in the winter months here despite our Chinooks.
http://www.migraines.org/about_media/helthsct.htm

http://www.migraines.org/about_media/helthsct.htm (this is my neurologist who gives me my botox....dr. Becker. neat info here.

normally we will get nice winds and weather but this year has been so much winter it has been so cold with lots and lots of snow!!!

so come on spring!!!! Let us get out and play again!!!
love and hugs,
Victoria:hug:

brokenwings- i also need to go back out to the range. even if i hurt just a little more afterwards, i've found that shooting does wonders to take my mind off of everything else going on. that, and the stress relief.... need to get back out there!

Most of us already know Gail and ATOSA. But thanks for bringing it up in case we hadn't checked it out and yes, it's bookmarked.

Nothing to do with ATOSA -

But remember that with "nonprofits" this just basically means that at the end of the year if they have extra money it can't go to the "owner" of the store. The can still pay employees ANY figure they feel like, they still get advertising money (those ads you see flying by on the site pay the org for that) and as far as I know they have no specific laws or orders on having to pay for studies, help people, etc. So just the word "nonprofit" doesn't mean you stop there, there are sites that show what nonprofit spent their dollars on and they have to disclose financials to the state agencies but you've got to know how to reach those to do a full "due dilligence" before you contribute.

I figure, I'm sick, I don't have money to contribute, and until we find a team of doctors who are going to put together a cohesive and not redundant set of testing for us, or have a specific plan to get the word out, then when I am feeling better, I have my own better ideas for what I've got in store. I just can't tell you because the timing is important.

So I started the book and first thing a horrid depression hit me. How can I get through it knowing the "ending" (no cure.) Until I've got my ending worked out I don't want to write a book that ends up putting me back 5 years....

I know you'll understand. And, OF COURSE, I will ask you all, in plenty of time, if you want to get involved and put in your story and I'll be more than patient. This is a hard process!!!


I think my first job will be to take my "Top 5 Symptoms" (which I did first bring up) (we get so cranky about who thought of what, I don't want to be one of "those") but I want to write to EACH of my 38 docs and tell them that they treated me, did or did not recognize neuro TOS, and here are the Top 5 and my favorite surgeon and they simply cannot keep pushing patients thorugh their office with this time bomb coming.

That's all I can muster for today.

IF any of you could get someone to drive you to my house in Rancho Mirage off of the 10 freeway we could have a meeting adn really talk about these issues. I am always open for us, I just can't travel and then talk...

Feel free to use anything I've posted here.
:grouphug:
Anne