Scleroderma Awareness Month

 

Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and all of this needs funding.  All of the activities I just listed, are supported by donations, grants and volunteers.  Every June, we unite to support the research, education and patient assistance.  We share memes, we wear teal, write letters to the editor and/or  we gather in parks and walk to raise funds for research of scleroderma.

So if you stop reading this post here, you have read the most important part of it.  Thank you 🙂

I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine.  I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.

Back to being sick and tired of writing about being sick and tired…  So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases.  Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured.  In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients.  I look forward stories of hope, memorium, and humor where we can find it.

You might be thinking two questions:  ”

1.  Karen, how can I possibly laugh at a time like this?

2.  Are you high?

The answer to your first question is that at the most serious of times, I have found a way to find humor.  Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next.  It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present.  On the science side, laughter also releases endorphins, and helps our brain cope with situations.  Laugh at what scares you.  It will only make you stronger.  (Go ahead, research how laughter is the best medicine.  Millions of Reader’s Digest readers can’t be wrong.)

My answer to your second question:  No, I’m not high. (As far as you know.)

I do mean it when I say I am sick of scleroderma awareness.  There are great organization making breakthroughs in treatment, and clues to a cure.  If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure.  Our lives depend on it.  Thank you.

 

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 SUCKS
Okay, 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.