No One Wants Scleroderma

Today was the 12th annual, Stepping Out to Cure Scleroderma walk by the Southern California Chapter of the Scleroderma Foundation.  It was a roaring success.  I am in awe of these amazing people who get together every year not just to walk, but encourage those fighting and remember those we have lost.

This year, I arrived at noon.  I could see people dressed in teal shirts hugging their goodbyes and  packing their camping chairs and tarps into their cars.  Once again, the walk was a wild success.

Murphy watching the Pride Parade in Long Beach a few weeks ago.  Forgot to get pics at the park.

 

I met up with some friends I only see at walks.  It was great to see them and was really the only reason I went.  But isn’t that why everyone goes?  To show support for each other and visit?  My feet had been hurting, and I didn’t feel much like walking.   Yet I still  took a walk through the park with my dog, Murphy.  I felt guilty about not coming to the walk earlier, because as much as my feet hurt this morning, it felt good to be walking.  As I walked away from the festivities, I felt better.  Then, I realized my true reason for not getting to this walk on time.  The truth is, I don’t want to be there.

 

 

 

I enjoy the people.  I enjoy the food.   I just don’t want to be there as a scleroderma patient.   And this doesn’t feel like a pity party, it just feels honest.  Look, no one there wants to be a patient, or know someone who has it, they just handle it more socially than I do.  And friendlier.  And less whiny-er.

I don’t like walks because I don’t want to be a patient.  Maybe it’s more about my social skills.  Or that most of my life involves doctor appointment.  I have missed so much time with my son because of appointments and tests.  This is the last week of school for my son.  I won’t be able to attend his awards ceremony because of one of four appointments I have this week.  Yet, I’m still able to make time to do stand up comedy.  It’s really the only thing I have been doing not related to medical appointments, without my son.

It’s funny because I go to my classes, and perform to get do something not related to scleroderma.  Guess what my topic is in my routine?  Scleroderma.  WTF??  I have to talk about it because my hands are obviously damaged and it needs explaining.  And I have to talk about it because it is at the forefront of my mind.  I’ve gotta get all of this our of my system so I can talk about something else, for corn’s sake!  But  in order to talk about something else, I suppose I should do something else.

If you skipped to the end…
I don’t want to have scleroderma, or live with the damage it has done.  I would like to change it.   I hope I don’t get snubbed at walks because I hate going.  It’s really not about the event itself.  Not liking to be at events is about not wanting scleroderma.  Duh.  No one wants scleroderma.

 

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.