[tshadow]

Dearest loved ones - and you that I know are loved and missed by me!

My docs concur that I had neuro TOS first, then due to continued working and no treatment, RSD followed and both are still here and not cureable. (Told not cureable by two world renown neuros now...so let's not fight about whether someone else's TOS may be cureable - it just may be! I'm talkin' 'bout me!)

So with that disclaimer laid, I may go into the hospital because I'm about 95% bedridden, with no energy to talk on the phone, can't do my own bills, etc. I'm pretty much just a blob, and no longer a smart blob - haha.

This last month I had a hard blow. I've lost a LOT of colleagues, family members, friends, etc., who couldn't "handle" my illness and did not take any time to understand it or give me any love. Now, one of my other friends of 30 years was here in CA visiting her sister, and I begged her to come by - (she used to always stay with me and fail to see her own family because we had such fun!) But anyways, I got really weird vibes from her again, so I just "outted" it - I asked, does my illness bother you? I won't write out what happened, as it's personal, but yeah, basically, she's got her life to live, and she can't handle my illness. I cried and cried. It's like losing a sister.

I have one friend left from highschool, and she's a sweetheart, but she's been busy with both of her parents dying. And then, because I was so sick on the days of their funerals - (actually, I cried so much I got myself worked up in a real flare) - that I couldn't get put together to even go in a wheel chair. (Pain was sky high, along with some other symptoms.) But THAT friend has actually forgiven me, sends me cute notes - like I said, she's a peach.

My ONLY other friends are those of you who know me from here, and I have to say, you are incredible. I don't want to embarass anyone, but the character of non-TOS/RSD or pain/disability people, vs. the character of YOU who have suffered and continue to do so - even while you try to help everyone on here that we can, and to start sites, and to email eachother and call - to be so darn sick and yet have your list of people you worry about, well, that's character. That's true love.

I have said it many times before, but I'll say it again, YOU all are really, really good people, and I am proud of being able to say I know some of you personally!

Ok, back to bed, head spinning, every time I have to "think"...

Lots of love. We need it. It helps. One person here actually saved my life by visiting me once. Powerful stuff on these boards!

[dawn3063]

It is so good to hear from you and I am so sorry to hear that you have had to endure such hard time lately.
I know I have lost touch with some of my close friends as well.. It seems once we are out of the loop for such a long time and unable to return, they go their separate way.. And it does break your heart.. My TOS family sure has mended that broken heart of mine many time in the past and I know they will mend it again sometime in the future..
Keep the faith my friend.. Your heart will mend with time..
You are in my prayers that your family and friends will be close to you this Holiday season..
((Big Gentle Hugs))
Dawn

[Jomar]

Tam it's great to hear from you again, so sorry about the way the friendships seem to go by the wayside.

I sent my new contact info to some former work friends but none have sent any emails yet - so i guess they have moved on, or just don't have time to write.

Isn't there a nice assisted living place that would work for you, instead of a hospital??

I'm not as smart as I used to be either- LOL dang it all!

We have missed you so much and have been concerned for you as well!! I am so sorry to hear of the heart breaking news re: your health as well as your loss of friends. Unfortunately, the friends fading is an all to real experience that I think most of us have shared with you. That is painful enough with out the added blow of finding out that your Tos is not curable.

You have been through so many painful and difficult issues and experiences in the almost 4 years I have been frequenting these boards; yet you still manage to keep a positve perspective on things. That is what I love about you!!

Take Care, and when you can, please drop us a line. It always makes my day to see your name pop up on a thread!!

God Bless Dear One and know that you are always in my prayers,

G ~

[Peg24]

Tam,

I will have to say as I read your email, that tears are flowing down my cheeks.

It was just about 1 1/2 years ago that I found the BT site and went and posted a thread explainng my symptoms, but not knowing at that time if Tos was what I even had.

Within two days of that post, I recieved the sweetest phone call from someone with so much caring in her voice and I was so touched. Especially when I knew what pain and suffering she was going thru herself.

That person was you, and I can't thank you enough for it.

I am so heart broken that friends and family have done you the way they have. I know it only adds to the pain and depression.

I, along with so many here wish we lived closer to come cry with you and be there to help you in anyway we could.

Please always know Tam, you are in my upmost prayers. Sometimes we don't understand why things happen in the way that they do, but I have realized through experience that God does have a purpose and a plan for it all.

We love you Tam and we will always be here to listen and share.

Peggy Schatzberg

[trix]

When I first found BT I didn't post. I lurked for quite awhile. During my lurking time I read alot of your posts. While some of the things you said legally were different here in Canada than in the states, I was able to have more informed and intelligent conversations with my lawyers. I was able to start off my lawsuit on a very strong foot. For that I thank you.

I also read your threads on TOS testing, and while I knew that any of those tests in Canada would require months and months of waiting. (in some cases over a year) I was able to have meaningful conversations with my TOS surgeon. We were able to speak in a way that both of us understood. He was able to explain to me about how he knew I had TOS without those tests, and why he felt that in my case they would be a waste of taxpayers money. For that I thank you.

I want to thank you for the empowerment you gave me. You helped me to take control of my own situation.

Sometimes we don't realize how greatly we affect the lives of people around us. I am here to say that you have had an amazingly positive effect on my life. I want to say thankyou for taking time from your pain. For taking time from the despair that grips us all to often in it's claws.

Please take your time to heal. Do what you and your body need. If it is a hosptial, go and know that you are doing what you need to do for your health.

I have prayed for you since the day I "met" you. I will not every stop. When I finish this message I will go and light a candle in your name. Know that you are loved. Know that your wisdom is cherished. Know that the respect we have for you will never dim.

Tracy

[DDayMBB]

Tam it is so great to hear from you... you know that to many of us you have been the light to our desperation, I am so sorry to think of you feeling so bad and if there wee anything I could do to help I would ! Maybe on of these afternoons I will give you a call,in hopes that we can spend a few minutes chatting! Regadless, as always you know thoughts go your way!!!!!!!!!
GOOBER-n-MARK

[law76]

You Know That You Are More Than My Friend. You Are A Lovely And Wonderful Person That I Care And Deeply Love. You Will Never, And I Repeat Never, Lose Me.......you're Too Special.

[Phillipe]

[QUOTE=jo55;47947]Tam,
Isn't there a nice assisted living place that would work for you, instead of a hospital??

Yes, isn't there an assisted living place you can go to. Where is your family for help and support during this illness? I have been there and so have others. It was my family that sustained me...not the friends and I truly understood as they have their own families to care for. Also, home health care is very good. I had them 4 hours a day x 3 times a week to give my family a break. If you have a church affliation, there are social needs people that can give limited help but some help is better than no help. Help is out there.

[flippnout]

Tshadow I'm so sorry for what you are dealing with. I have read all your post from BT1 and it has really helped me understand what I was going to be dealing with having TOS and CRPS (RSD) and the WC system. I have missed your post as well as others you all had so much information to share and give to all us newcommers and I want to say thank you and I hope you the best for you Tshadow. I know I said goodbye but was told you left a great message so I had to stop in and say thanks.
I hope others had read your post befor BT1 closed and got some of your info, as well as others. Hugs to you and best wishes Tshadow I'm sure you will make more dear friends in the future they will be the ones who really care about you, not your illness.
flippnout