Scleroderma Awareness Month is Over...

As a scleroderma patient, I feel this would be my time to list my wishes.  Of course World Scleroderma Awareness Day isn't Christmas.  But the last hour in the month of Scleroderma Awareness Month is a great time to make requests.   You know how we tell our kids to make a list for Santa, the Great Pumpkin or "NAME HERE". Because even if there is no Santa, the Great Pumpkin or "NAME HERE", there is always an eager parent or loved one looking to fulfill at least one wish of many, on a list of wishes.  Right now there are researchers working on a cure to fulfill at least one of my wishes.  And there are doctors trying to fulfill the wishes of patients around the world.   Yes, I am equating researchers and those helping them to Santa's Elves.  They do they work they do because someone, somewhere said, "I wish I could help."

So, how about the Scleroderma Giraffe?  Yes, my "NAME HERE",  being will be to the Scleroderma Giraffe.  And instead of elves, the Scleroderma Giraffe has gnomes.  (What?  You don't like the Scleroderma Giraffe?  Write your own damn blog.)

Dear Scleroderma Giraffe,

First, I would like to say that it is really cool that you are able to have your head so high, then bring it down low to drink water, then bring it back up without passing out.   That is really cool.

I have a lot to ask, so I've narrowed it down to two.

1.  You know I'm going to ask for a cure.  (I had to ask.)  Click here for the Peter Griffin Argument. 

2.  Okay, how about some more of those breakthroughs in research?  Thanks for the break throughs so far, and I look forward to celebrating more.

Well, I think that covers it for now.  I could  go on for days with requests, but I would really like it if you paid less attention to what I'm writing and get back to helping the gnomes with research.  I know you are able to read faster  because of your giraffe magic, but there are lots of patients who can't wait one extra minute.

Sincerely,

Karen

Scleroderma Awareness Day

As a patient, I don't need a day to make me aware of scleroderma.  

Today, you will read about patients fighting for their lives and treatment.  I'm going to do something just a little different: I'm going to show you what I can do because of treatment available for scleroderma patients.

I am here because of research and exceptional care.

I also am here because I have learned to be my own best advocate.

I am also still here because scleroderma is not my life.

Instead of providing a list of  how it's not, here are some pictures of me fighting.  This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.

If you have scleroderma, remind yourself it does not have you.  If you don't have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.

I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease.  Twenty years ago, I did not think I would still be here.  I certainly didn't think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.

 

What would I say to someone newly diagnosed with scleroderma today?

I  would say:  Expect the unexpected.  Don't give up even when it feels hopeless.  Get treatment for depression.  Exercise.

Scleroderma is going to knock you on your ass.   

It may take a while, but you can get back up.  There are no guarantees, only hope.  Keep going.  Get back up after you get knocked down, and get your hair pulled every now and then.

A very special thank you to West Coast Krav Maga, and Kevin!

Big Day for Marriage Equality Today: Big Day for Me & Scleroderma,Tomorrow

June 26, 2013

I am so inspired by the celebration going on around the country for marriage equality.  It gives me hope the world can be changed if we continue to fight.

Change doesn't just "happen".  Someone has to take steps to set change in motion.  And it doesn't happen overnight.  The law has changed and marriage equality will eventually reach all 50 states.

You must be wondering, "Karen, this should be a whole other blog.  What does this have to do with scleroderma, or any chronic illness?"

Just because we may have a chronic illness, that does not make us immune to discrimination.  Patents and those who love them, should have the right to visit them in hospital, be a part of medical decisions.  That if a person looses someone they have spent their life with, they have tome to grieve, and are granted the rights to benefits left by the one they have lost.

So yes, marriage equality is tied to scleroderma.  In the fabric of time and space, we are all connected and our actions have a ripple effect.

The fight for marriage equality is far from over.  All states will recognize same sex marriage eventually, but there are many hearts and minds against that change.  Luckily, those hearts and minds against it are becoming less and less.  Change happens.  And it doesn;t happen without a fight.

Today, as you fight your fight to stay on this earth, take a moment and find celebration of a fight that's not over, but have achieved a long overdue   victory.  Victory is ours.  Victory will be yours, one battle at a time.  Find celebration on TV or whatever you have.  Listen to the celebration, feel some joy today and live to fight another day.

Scleroderma & Me: An Update

We interrupt this wonderful life for 

scleroderma.

Watch this video for more 

information...

Click Here 

Why I Am Not Scleroderma

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."

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

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!!!

It's on people: Here's How we're going to get #Scleroderma to trend worldwide.

If you are reading this, it is past 12:01am PDT, June 3, and we are going to get #scleroderma to trend.

I bet you are wondering, "Is she high?" Nope.  As far as you know

Next, I bet you are wondering how we are going to do this?  Great!  Because I have a plan.  First, let's start with the basics.

Are you already on Twitter?  
If yes, go to @Turtlemighty or check the tag #scleroderma.  Tweet about scleroderma, someone you know who has scleroderma,  or a happy memory of someone lost to scleroderma or even ask a question- from a patient, or caregivers perspective.  If you are looking for medical advise about scleroderma, SEE A DOCTOR.  Both a rheumatologist and a shrink.     Don't seek medical advice online. But, you are smarter than that, right?  Okay. pretty easy.  Stick with me though, there's more.  First, we need to help out the newbies.  Be kind!  We all had to start somewhere.

Are you not on Twitter, but would like to participate?

AWESOME!!!

Follow these simple directions:  Go to www.twitter.com, create an account.  Even if you don't want to make it a part of you life, you can always delete the account.  If you have any questions, message me on FB.  

Okay, so now you are Twitter.
Great!  Now, you don't have to tweet all day or anything.  Just throw a few out throughout the day with the tag #scleroderma. If you have time to sit down, do a search for #scleroderma.  Re tweet something if you don;t know what to say.

What is retweeting?
Glad you asked!  Retweeting is when you say "I agree" or you thought the message of a tweet was so nice, it needs to be said twice.  There is an option in a tweet that say's "Retweet".  Click Retweet.

You don't have to repeat everything.If you have five minutes in your day, read through some tweets, favorite some, retweet (RT), modify a tweet, (MT), say something inspiring.

WE ALL KNOW SCLERODERMA SUCKSOkay, now that we have that out of the way, keep it positive.  Not because we're all Miss Mary Sunshine, but because our goal above all is to educate and inspire.  Look, a Kardashian can go into labor and just blow us into the ether of space and time.  Let;s leave a mark so that patients having a bad day can find out that scleroderma is not a death sentence.  People die from it.  It's painful and horrible.  But if a patient has hope that if they can just make it through the worst, there's a good chance they will live longer than they ever imagined.  I say that, because I did that.  19 years ago, I was diagnosed with scleroderma.  I heard of no one living through it.  I wished for my experience with scleroderma to be over.   But, that is not possible.  I will always have scleroderma.  It's a progressive degenerating and soul-sucking disease.   And here I am almost 20 years later,with pulmonary fibrosis, possible pulmonary hypertension, missing the tip of my right thumb, my hands are severely disfigured and I have to as someone to help me pump my gas.  I have been through the craziest medical procedures I couldn't think up if I went on an LSD trip for a month.   Yet, here I am 20 years later, longer than anyone ever thought.  I have a 9 year old son, and guess what?  I'm happy.  Life didn't turn out how I planned.  So what.  Does life ever turn out how we planned it?  EXACTLY?  Sure, my lungs are hardening and a whole truckload of problems, but let me tell you what I CAN do:

You ready?  Because when my thumb was falling of from severe Raynud's, or I was nearly dying from organ failure during childbirth, or having a medialstenoscopy to rule out lymphoma; I never imagined that at 42 I would be doing Krav Maga, Brazil Butt Workout, playng with my nine year old son, planning trips to New York and share a hotel room with 4 other people, or planning a ski trip for my son;s 10th birthday or writing a post about how to tweet an hour before I encouraged the world to tweet about scleroderma.

My power port for easy IV access.

I lived through a few things and I'm going to live through a few more things.  I don;t care that my power port for easy IV's gets in the way of my cleavage.  It doesn't.  No one sees my port because my cleavage is not bad.  I also never thought that I would start a rant about my boobs, but mentioning boobs may put me in more searches.  So join me and a few friends on Twitter.  Life's short.  Let's play.

1995. I thought I was going to be a nurse. Life never turns out how we expect. Although, I was pretty sure I would keep my figure, and I have. But that;s a whole other post.