Notes from a circus freak.

Suzanne, your "Rock on, freaky girl" line reminded me of the rhythm of Simon and Garfunkel from a long time ago. "Sail on, Silver Girl, sail on by," from their Bridge over Troubled Waters.

Rock on Freaky Girl,
Rock on by
Your time has come to shine
All your dreams are on their way

See how they shine
If you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind.

Thanks for the kindness of easing our minds. We need to be reminded often that circus freaks are people too, with all the dreams that involves. Sometimes -- for a minute or an hour or a whole morning -- we even forget about our swelling for awhile, and life is blissfully "normal" for that bit of time. May it happen often for all of us!

Gentle hugs,
Biney

Suzybelle, you are normal.

Let me repeat that.

You. are. normal.

We notice the stuff that goes on with us far more than other people. I've noticed that most people seem to think I'm dealing with carpal tunnel syndrome when they see the gauntlet. And you know what? I bet most people don't notice when women who've had BMX don't wear forms. Sure we have scars and other (to us) weird stuff happening but lots of people have all kiindsof stuff going on and we don't notice.

Which, of course, does not excuse the rude remarks strangers sometimes make, but people who are that rude would find something else to be rude about if we didn't have noticeable issues.

All the best.

Leah

Binney, love what you did with one of my favorite songs!

Suzybelle,

I'm not normal either, and I appreciate all that makes you not normal!  I have been one of the lucky LE sisters, very rarely having to wear my sleeves and gloves...until a week ago.   Thank goodness I had just ordered my Isotoner fingertip-less gloves.  My expensive Jobst gloves never fit well, and one now has a hole in it.  So they came just in time for me to wear them to my first social function last Friday night.  Since our move, we've begun dancing twice a week with new friends, and taking lessons once a week.  Anyhow, we sit at a table with two other couples, one of whom knew about my cancer and LE.  I had worn long sleeves which mostly covered things, but as we sat at the table, my sleeves fell back to reveal the gloves.  The other woman asked me about the gloves.  (I had practiced saying, "It's medical, not a fashion statement," which I hoped would be enough to stop any conversation, but so much for practice.)  I used my line, then went on to say I have swelling as a result of breast cancer.  She responded, "I had breast cancer, too.  Mastectomy." To which I responded, Bilateral mastectomy."  And that was the end of it.  Not embarrassing.  And now I know I have a bc sister just down the street from me!  And two more people know I had bc.  

So, yes, people do notice sleeves and flatness.  I've been wearing foobs again for a few months, and I am a little more relaxed about my appearance, but I know I'd be used to flat again in a heartbeat.  You are so right.  Everyone has something that is not "usual" about him or her.  It's just that some of us have more noticeable differences.  What is most different and noticeable about you, however, is that magnificent sense of humor that just won't quit!  Thanks so much for this post and for all your participation in this board.  You make it so much more bearable, sometimes even enjoyable!

Dawn 

Suzy, your contemplations are wonderful and full of optimism yet address the reality of what has happened to our bodies and what it's like to adjust to the changes. You're right, it could be worse - we could be stupid and have LE. LOL! Thanks to your post, I'll be singing Super Freak for the rest of the day! :-)

You came to rant but this has turned into a thread to encourage.  We can say having a sense of humor is an SE of BC.  Now I want to see a picture of the red cowboy boots!

Suzy, you bring joy and humor into so many lives. I was snorting over the "yeh Einstein, I get it re-inked every night."

You have a gift--of tremendous insight coupled with hilarious humor--and of easing us into realizations that are bittersweet but cushioned by your honesty and kindness.

You are a gift, IMO.

The David Sedaris of these boards. But ten times funnier.

Kira

I love the "yeah Einstein... " line too! Don't you wish you could have just said that and let it fly???!!! LOL

And you know what - being a little "bent" is not such a bad thing! I always think my personality is a little off kilter too! It is just finding the right blend of friends that love you for who you are!