TBD

TBD on Ning

I had friendly exchanges with Tina on the old TBD and looked forward to knowing her better. I was shocked and saddened when Tina announced she was dying and would be leaving the site.

When accusations about the nature or validity of her illness appeared, I was confused. Simultaneously going through a betrayal in real life at the time didn't bolster my trust, especially online. I grew angry at the possibility someone or some people were hurting others and said things from that frame of mind that I now regret.

I have apologized to Tina privately and I am now apologizing publicly.
I have no more to say on the subject.

realteal

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Hello realteal,
I am proud to say that I am also a friend of Tina Volk's. I owe her so much on so many different levels. I, too, am very ill with lupus and a multitude of autoimmune diseases. Though only diagnosed a dozen or so years ago, My specialist believe I have been ill since childhood with different parts of my body being affected, the disease remitting, and returning in another area. I fought my main doctor, my rheumatologist for 5 years before I finally left work, and that was only because other specialists ganged up on me. My co-workers never understood how sick I had become - I didn't look sick to them. When I would return from a week or two (although I did all of my own work), my department treated my as though I had just returned from a spa. My lymph nodes were the first to be affected, arthritis systems (I have rheumatoid and anklosis), severe weakness, trouble w/ bones throughout my body, especially neck, entire spine, s-i joint. One kidney, both lungs, and for the last few years; my brain. I worked with a gifted education program and worked with amazing national heroes. The last visit to the doctor I had to look up my social security number for the first time since I was a kid. There is no cure for lupus, or many of the other diseases I have. There is 1 drug that was "kind of" developed fro lupus - and it does not help many systems. That drug is over 50 years old. No new drugs in over 50 years. People in my condition often die of secondary illnesses caused by the medication they are taking to fight the lupus. There is no winning. Was someone expecting Tina to pick a day for a funeral? I don't get this. I could have a stroke keyboarding, or live 5 more years. It's not in our hands. It's certainly not in Tina's!
I'm so sorry for your multitude of health problems, Lynda. Your daily situation sounds agonizing. I can only hope some cure comes along for everything that is wrong. I wish you life and health.
Thanks, moosie. Back at ya!
realteal,
I did not mean to go on about my own condition, my point is, there are many of us here that are sick and frightened. Tina has given us a gift of strength and honesty. I would tend to keep quiet about my health, although as a Lupus Foundation board member in MO, I know lupus is not rare and too often blown off by doctors. I would be helping people to share info with them. I know many others who have more complicated (but interesting) lives feel the same way. Tina has helped show up how to live, how to help, how to enjoy. She's managed to "untrap" us.

Many, many, too many have lived through terrible childhoods, Tina included. I'm sure there's a link between the two. Tina (and Lori) have helped so many face the monsters in our closets, where so much grief began. You have to be tough to do that. You have to be even tougher and have arms that can hug states away to keep encouraging grown men and women that you will listen to their nightmares. You will understand. You will still care about them. Tina reaches across those states, she hasn't let anyone down, and she still always has more in her heart to give, to try and heal.
Lynda, Tina all of what you said and much more. Not only she lived thru the nightmare she found strength to provide support and find kind words for people. I admire you, Tina!
When Tina made that announcement I thought that it was the day when the doctors told her news and she was very upset. Doctors do not hold any news from the patients here, in USA, unlike in other countries. In other countries doctors tell the news to the family first and then depending on their desire, they might or might not tell the patient whatever the news are. Never in my mind I had any doubts that Tina was in very serious condition. I still don't understand how people could doubt her words. You don't make any jokes about diseases as serious as Tine had. May be because I was taking care of my husband when he was sick, and I knew what she was going thru. When I think about what happened to Tina, I think it all was due to the fact that people don't have any trust to one.
another.
It's my unique way to adopt to the environment.
I dunno. You wanna tell me it matters now?
Thanks so much for your kind words, SD1.
You mean again Tina is dying and leaving? or she is still here on the new TBD? I thought she just returned here.

Sorry if I am confused.
Hope my spelling is OK.


Be kinder than necessary

because everyone you meet

is fighting some kind of a battle

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