Tuesday, July 1, 2008

Better than a support bra.....

....the support of my friends. You know who you are.

When we get sick, and I mean that as in chronic illness, it's much like divorce. You find out who your real friends are. With both circumstances, you find that there are some who treat you like you have the plague. Nope, not really friends but you thought they were. Then there are those few who are there through thick and thin. Uh...In my case, mostly thick.

Anyhow, I have found that a support system of some sorts always helps with the flopping around that goes on without it. You know what I mean. Floundering. Meandering. Going places where one doesn't need to or mean to go. I found that in the support group at cushings-help.com. But I didn't just find support. I found friends. Real friends. Friends who tell you what they really think. You know what I mean? "Robin, you have spinach in your teeth and you need a breath mint!" Those kind of friends.

I swear, I don't know what I'd do without this support group and the friends I've made through it. They have/had/may have Cushing's or related endocrine illnesses. I don't have to explain what I mean when I say, "I think I'm in AI." THey know what I mean when I say, "IPSS, ACTH, TSH, T3, T4, FSH, LH, BLA, GH, GHRH, anti-TPO, etc...etc..etc..." And none of us have medical degrees. How 'bout that? Ok, Bug has one for critters. She should have one for human critters.

How many people do you know that you can CC on an email in the middle of the night with a question about a medicine and get 5 CC'd replies back? Almost immediately? And if you don't get a couple then, you'll get 'em a few hours later. With tons of info and worlds of advice. Good advice. And sometimes a kick in the shins to go with it. "What do you mean you are going to work with a sinus infection, 100 degree fever, in AI, and dizzy? Get your @#$% you-know-what home!" And if I don't respond, my phone will ring. And ring... and ring..... Until I do. Why? Because I live alone and they care. They worry about me. (Thanks, y'all...you know who you are!)

And if I'm really scared or if I need just to share or need some information, I can post on those life-saving boards. Those I've mentioned a zillion times already. (Thanks, again, MaryO...you know they saved my life.) Someone will be on there to respond. And help. And care. As I will when I see a post like that. We believe in paying it forward 'cause that's what it's all about.

I've met quite a few of these folks in real-life! You betcha. But those I haven't are just as dear to me as those I have. We've shared just about everything but a real hug. And one day, well, we are going to do that beach trip and share those hugs.

Everyone with chronic illness needs folks who understand for support.


  1. Robin, I sure do love you girl. You are so right about the support of friends. I don't know what would have happened to me if I hadn't found the boards and all of you extremely special people there.
    You almost made me cry with this one! I am so thankful for your friendship.

  2. Backatcha, my friend.


  3. You took the words right out of my heart Robin Girl!!!

    Before I got ill, I had become a real workaholic and had often missed times to nurture my friendships. I have 2 close girlfriends that I work with and they have loved me through my "no-shows" when I was too sick to meet them for breakfast, as well as times I didn't want to talk.

    Mary's website has been not only a life saver, but a means to find real purpose and joy in the midst of the chaos and uncertainty that comes will an illness that's not easily diagnoised.

    My online friends are ALWAYS there when I need them and hopefully I've been able to be there for them.

    Hugs, Gina

  4. Robin, I am forever grateful for you and my other cushie friends as well. I treasure these friendships which are rich with support, caring, and education. Without you all, I'm not sure how I would have made it through the last couple of years in dealing with all the wacky symptoms, testing, diagnosis, treatment decisions, post-op stuff, hormone replacement balancing, and recurrences.

    I'm so glad we can help each other!

    And hey, special kudos to you for this incredible blog.




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