Why I Am Not Scleroderma

Dog barking with caption: "some days, we just need to get our bark on."

 

Yesterday on Facebook, I expressed my disappointment with  I.Am.Scleroderma campaign.   I do like and support the foundation who did it, because so many patients benefit from their work.  I am not happy with that campaign. You might ask, why not send a letter?  Well, I had a thought, expressed it on Facebook and wondered if other patients felt the same way.  Plus, I don’t post to make any friends,  I just post honestly.  I was told once I should think in a more marketing perspective by a former so-called mentor.  We no longer speak and it was a very smart decision, but that’s a whole other post.

I write to get conversation going about not only scleroderma & sarcoidosis, but also associated conditions like  pulmonary hypertension, Raynaud’s Phenomenon and mental health.  So, in the spirit of Scleroderma Awareness Month, and my slacking last year by not speaking out when the I.Am.Scleroderma campaign started, I want to explain to you why that statement offends me so.

This is not an attack on The Scleroderma Foundation.  This is my disagreement with their choice of wording for a campaign.  Since deciding to independently volunteer to raise awareness and have no attachment to any non-profit, I have the luxury of speaking from my heart, and not from a marketing perspective.  I have nothing to loose by sharing my feelings, because that’s all they are, my feelings.    They will not buy or sell anything.

Anyone who sees me is free to cuss me out for saying what I feel about the meme.  Please comment.  I will moderate, but as long as there are no racial slurs or snake oil, I will make sure it is visible.  See, it’s not the sharing that was encouraged by the campaign I dislike.  I read some great posts by patients and saw some great videos blogs as well.  The program is great, but the message is: I am scleroderma.  Putting a period between the words does not lessen the anger that statement creates.  I have sat n my feelings for a year.  One reason was I thought I just needed to calm down.  I haven’t.  So, here is why I am not scleroderma:

I had my first serious complication from scleroderma in 1996.  After two digital sympathectomies, I thought my hands would just return to normal and life would go on as planned.  It did not.  I continued to loose range of motion all over my body.  In the second semester of my sophomore year in nursing school, at then Viterbo College,  I was evaluated for physical fitness to continue on to do my clinical rotation.  As I reached down and found I could not touch my on toes, it became painfully clear that scleroderma was progressing faster than I ever imagined.  I think it was that moment that triggered profound depression and anger.

From that moment on, I didn’t say it, but I thought of myself as scleroderma.  I was diagnosed with depression for the first time and received counseling therapy through the VA in Sparta, Wisconsin.  It took weeks to get to the statement, but my therapist said to me, “Karen, you are not scleroderma.  You are not your diagnosis.”

Skip To the End
It was easy to say, “I am not scleroderma”, but it was not easy to feel.  My actions reflected my feelings for years.  I took a blow torch to many bridges and hurt people who tried to help me in ways I continue to regret.  I have forgiven myself, but I will always regret my actions.  I can’t change them and those actions in my past have opened my eyes to create a better future.

So when I say that I am not scleroderma, it comes from a place I worked hard to get to.   A campaign called, “I am scleroderma” makes me sick.  The name makes me sick.  I can in no way endorse it.  I want very much to share the blogs and videos from the campaign, but doing so shares the message, “I am scleroderma.”  I can no longer find the campaign on the website, but there is a a mess of scleroderma blogs with a Scleroderma Foundation logo with the words, “I.Am.Scleroderma.” on it.  I will read the post, but I won’t share it because I cannot share that statement.  Well I’d share it with a paid endorsement  and a disclaimer that it’s a paid endorsement.  (Hey, a girl’s gotta get her pedicure on when she can.)

Thank you for taking the time to read my  thoughts about a poorly named, but well intended campaign.  My wish when I started blogging in 2009 was to share the message with fellow patents of any illness that they are not their diagnosis.  I learned the very hard way, which has made me cynical at times.  I only hope this post helped to better explain my reasons for hating the name of it and not the foundation.  I will continue to walk and support patients.  I will continue to share their useful information.  I will also never hold back the way I really feel.  Also, I noticed I am unable to find that meme I.Am.Scleroderma on the foundation’s website.  Yay!!!

Cat with cherry tomatoes on paws and balanced on head.

Let;s take a deep breath and remember that we can’t agree on everything. Come on, you know it would be no fun of we did.

Hitting My Wall And Breaking Through

In June, I hit the wall*.  It’s not my first wall, and it won’t be my last, but I have broken through this one, brick by brick.   I hit my wall in June after a personal disappointment  and  became less active in social media.  Not as a blogger, but as member of the community.  I had given up on some goals I had originally set and  I couldn’t shake the feeling I had nothing left to offer, until this past Sunday. September 1st, I started a morning routine that I have committed to doing for 40 days.  It’s some deep breathing and mediation.  (And yes, I have had to start my 40 days over after skipping my third day; and yes I will be blogging about that once I complete it.) Back to my point: Sunday morning, I opened my eyes at the end of my routine and my answer was staring me right in the face.  It was a dry erase board filled with ideas, topics and goals on it.  I realized I was not disappointed because of what happened.  I was disappointed because of what had not happened.  This dry erase board was crying out to be read.  These were my ideas and my stranded ideas had been subconsciously begging me to release them from their two dimensional prison.  (Cut to Superman 2 and those villains hurling through space in their triangle.) So, I’m setting them in motion.   First, I added another FaceBook page, The Mighty Turtle That Could. It’s entirely devoted to activity.  Not all patients are into or able to do activities so I made it separate.  So far, I have been the only participant, but eventually, someone else will share.   In addition to my Facebook page, I added an online publication of the same name.   My original idea was a page to get patients moving, but I remembered not all patients should or can move; so, I made it about activities.  This could be just some simple deep breathing, “head bopping”(Lexie) to some music and of course exercise.  I want people to share their success, goals

If you are able, you can share this publication with friends and family through social media like Facebook, Google+, Twitter, Linkedin and more.  By sharing, you can do more than just raise awareness; you can help patients, family members, friends and caregivers who feel isolated find others who are in the same boat.
My experience with social media has shown me I am far from alone with scleroderma, sarcoidosis, depression and coping with progressive degenerative diseases.  My very first friend with scleroderma, I met on Twitter.  She lives in Denmark and I am close with  Another, in Indiana.  We are all truly in this together, and there are no geographical boundaries, thanks to social media.

So, as the bricks fall from my wall,  I have accepted I do not type as fast as I can think.  My thoughts flow through my hands as they have always done, so voice recognition software is not an option.  I suppose it could be if I tried, but it makes me feel good that I can still create with my hands.
Thank you for continuing to read this blog.  I hope you will visit other writers on my blog roll and www.sclerodermablog.com Reading the blogs of other patients and topics other than Scleroderma and Sarcoidosis not only helps to raise awareness, but reminds us we are not alone and we are not our diagnosis.
If you blog and you would like to add your post to The Mighty Turtle That Could publication or find one you would like me to include, contact me through FaceBook or Twitter
*If you are unfamiliar with term, “Hitting the wall.” It’s a term most often used by athletes, but it can be applied to personal ambitions as well.  In this scene, from Run Fat Boy Run, Simon Pegg’s character is brilliantly shown breaking though his wall near the end of a marathon. Here is the set up:  His character is not a marathon runner, but runs a marathon in attempt to win over his former fiancé he left at the alter years before.  Before he busts through his “wall”, Pegg’s character has to face his feelings.  To me, it is a very powerful scene about how no matter how many people we have supporting us, we still feel alone.  We need to face our fears and feelings we have stuffed in order to feel connected with those supporting us.   Click Here to watch.  Please comment if you have felt this way.

Sclerodactyly-The “S” in CREST

In the late 80’s it was all about hair bands and the “X” in Sex.  Now its the ’10’s and it’s Sclerodactly & the “S” in CREST.  (Click here to see a picture of my hands) Oh how times have changed. (& no I will not post a picture of me in animal print spandex)

Photo of hands contracted by sclerodactyly

My hands are more useful than they look. With massage, I get lots of passive range of motion. The condition of my hands is called Sclerodactyly, the “S” in CREST

Here are some things I miss:
Clapping
Holding hands
Throwing a baseball

I could go on and on but the truth is, I have spent enough time pining over what I can’t do.  Here’s what I can do:
Clap with my wrists
Hold fingers
Play catch with a bigger ball.
Yoga
Spinning
Play Legos with my son
Get the best parking spots
Use my expanded vocabulary that includes many latin based words
Appreciate the metric system (Why are we NOT using it? So much easier!)
Type like Peter Jennings did, with two fingers.
The ability to tell if a CD case is empty just by picking it up.  That has nothing to do with Scleroderma but it is an underappreciated skill.

CREST has changed the way I do things, but it has not stopped me from doing what I want to do.  (Well, except rock climbing- but I’m working on that.)  My point is, I can choose to focus on what I can or cannot do.  Both lists would be right.  The list I choose to focus on does make a difference on how I face my health issues when I wake from my dreams of normal hands to the reality of the hands I have.

I can’t believe I found this video: Enjoy the spandex and younger KISS without make-up.