Okay, maybe not ever.  But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?  

Are you healthy?  Have you ever wondered what it is like living with a chronic illness like scleroderma?  Watch the movie Ground Hog Day.

It’s no secret I believe Harold Ramis was brilliant, But I never really knew how brilliant, until I watched Ground Hog with my ten year old son.  Bill Murray’s character, Phil was having his worst day ever, over and over.  Things eventually got better for Phil, but not until he figured  out how to be happy, no matter what his circumstances.  (Yeah, I know it’s an old movie and you probably got this message back in the 1990′s, but this is still new to me.  So please humor me and read on.)

I can’t speak for everyone with a chronic illness, just me, and for me, it has been Ground Hog Day since 1994.  Every day, I wake up feeling okay, then I try to use my hands, or I get another weird diagnosis, or I am forced to train another doctor. Providing me plenty of food to nurture that garden of resentment and anger I tend  in my heart.

Let’s be honest, I’m a bitch.
Like Phil, I do not want to make friends with people who I do not wish to relate to, like other patients with scleroderma.  There, I said it.  I don’t want to get together with other patients who have scleroderma simply because we have scleroderma.  I would love to get together with other patients who have scleroderma and go to a movie, hiking or a root canal.  Anything but talking about living with scleroderma.    And yet here I am writing about how I hate talking about scleroderma while I’m talking about having scleroderma.  You see, it’s not really about the other people in my life.  I just don’t like being in this situation.

Like Phil, I had to stop and be present in my environment, find something I enjoy and then do it.  My problem was that I hated my environment so much, I wouldn’t stick around.  Have you noticed I have been moving every single year since 2009?  My family has, and I just got the memo.  I’m running from something.  But this year, I decided to stop running.  hen I watched Ground Hog Day for the 5oth time and related.  I still haven’t figured it all out yet.  But I have figured out I too could be that “nice young man from the motor club.”  I’m just not there yet.  And that’s cool too.  Or maybe I am there and I don’t know it.

I can fight situations all we want.  But then the time comes when I  need to stop driving angry, and today will be tomorrow.  Confused?  Me too.  So, why not  curl up on the couch and watch a classic Harold Ramis movie.  it makes everything better.  Have some popcorn, and don’t be stingy with the butter.

 

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I found a video by a kick-ass feminist.  I started commenting on her video, and started typing a post instead.   

I’m showing this video to my son, who is a ten year-old feminist.  He once looked at a place mat of the US Presidents. I knew my kid was smart, but I realized he was the most brilliant person I will  ever know.  He looked up and down both sides of his place mat. Then  looked me dead in the eye, and asked, “Mom, where is the girl president?’ That’s my boy!

My very first experience with term, Useless Female, was this:
It was  July, 1990. I was in boot camp.  I was out alone in the middle of the day, making my way back to my barracks from a doctor’s appointment.  Recruits, as we were called, always walked in groups, but sometimes recruits would be out alone for appointments.

A drill instructor of an all male company, stopped me, and  ordered me to come up and stand with him in front of this company.  He then pointed out how bad my clothing looked, he reached into my front breast pocket, pulled out my ID and shouted about how stupid I was because it was not lined up correctly. He pointed and spoke about me as though I were a mannequin,not a human being standing next to him.  I did understand why.  He was explaining to his company of recruits that there was no lower form of life than a useless female.    I only remember screaming and the word pussy a lot.  He  punctuated I think every  talking point with,  the question, “Do you want to be a useless female?” to his company.  I was 19.  I had been there maybe eleven days.  Boot cam hadn;t formally started for me yet, because we were being acclimated and in a temporary holding barracks.    I really did not know how to speak up for myself at the time.

I had been there less than two weeks, and that was just  the beginning of the humiliation and ass-grabbing  that was accepted as the norm.  I still don’t know how to wrap my head around that part of my military experience.  I do think it is important to share this story.  The story I have is not unique, we still have a long way to go to before we can even entertain the idea that the problem of sexual discrimination, harassment and worse in the military, is a thing of the past.

Many things have changed, but not the attitude that women are unequal.  It’s getting better, but I am still called Mr. Vasquez at the Veteran’s Hospital.  Actually, I have been a service connected veteran for 20 years now, because when I was 20, I did body work on boats, but I was not given the proper safety equipment until I could prove I could work as hard as a man.  I was temporarily from our ship to repair small boats.  I was one of two females.  We both worked over 14 hour days for weeks, wearing dust masks and  using masking tape on each other to pull fiberglass out of our skin at the end of each day.  We proved that we could work harder than the guys.  So we “won” our respirators.  Oh and the guys we beat, were sent back to our ship, while we stayed behind for the coveted spots we had one.  Of course, according to them, we had sex with the officer in charge to get the coveted spots.

Watch Why I’m A Feminist, by Laci Green. Find her on Facebook and keep an eye on her.  This lady is going places.

 

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It’s not my strength in spirit, or desire to help others that has kept me alive far longer than many expected.  I  am stubborn and  I refuse to accept my limitations because I have no patience for assistive  devices that move like molasses.  Yes, I do realize how childish that sounds after typing it, but I’m okay with it.  When I had to stay off of my foot for forty-five days, I used  scooter at Target.  I picked up everything in that stupid front basket and limped to the cash register, and I still moved faster than that scooter.

People tell me all the time how strong they think I am.  They go on about how I continue to live life bravely.  I’m not strong.  I’m not brave. I am deep in denial, and  I want to look good.  Does that make me a shallow person?  Look deep into my eyes.  Aren’t they gorgeous?    

Sure, it used to bother me that I can’t wear the four inch heals everyone else gets to wear, then I discovered shorts with Ugg Boots.  I know, it sounds weird.  And the shorts aren’t even that short. But it’s a great way to keep my body temperature under control, which is important if you have Raynaud’s.  And it doesn’t hurt that  Ugg Boots look good on me.  

The love I feel for my son and the thought of dying too young if scleroderma hardens my body sure is sad, but that’s not motivating enough to get me to exercise.  But do you know what is?  It is the remote possibility my son might have to see me ride a Rascal Scooter in Target, with an oxygen tank wearing velcro shoes.  Sure, I want to be around for my son, but I want to be around for my son and have an ass so perfect, one could bounce a quarter off of it.  Is that wrong?

 

 

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I am in no way qualified to give advice about methtrexate, (or anything, really)  but I’m going to share my cautionary tale.    It’s a bit of scenic route.  Thanks for riding along.

When I was first diagnosed with scleroderma, I had three questions:

1.  Sclero-What?

2.  Is scleroderma going to kill me?

3.  Can I drink with these meds?

The most important question I have ever asked about scleroderma, and eventually about sarcoidosis and rheumatoid arthritis,  is  question number three.  No matter what the diagnosis, the answer to the first two still have easier answers than number three.  No one is really ever mentally prepared to be diagnosed with a debilitating, fatal disease no one can pronounce, so you’re going to cope some how. Why not do some drinking? ( smoking or eating.  I am so thankful someone was wise enough to put marijuana into baked goods. God Bless America.)

I’ve been taking methtrexate off and on since 1996.  This does not make me an expert.  It makes me someone who is lucky to be alive.    I am guilty of playing  ”home pharmacist” on more than one occasion.  It has been helpful to me at times like the Percocet Incident: when  doctor sent me home with copious amounts of opiates to take whenever I was in pain, which was all the time.  I could take eight Percocet during the day, come home from work,  have three margaritas and still be sitting upright,  carrying on conversations and playing Crash Bandicoot until 11:00 at night.   The information I needed to survive the progression of scleroderma was not yet available in the 1990′s.  In fact, the last twenty years have been a sting of events, while I wait  for the research to catch up.  I’m not saying that anyone is lucky to be diagnosed with scleroderma, but I will say that it’s better than being diagnosed with scleroderma  in 1994,when doctors would answer my questions about medication and alcohol with statements like:  You should do whatever you want, you  don’t have much time anyway.  

Okay, so here is what I did  with my methotrexate.   Big emphasis on the did.  I now have doctors who answer my questions without the premise, “Well, you’re going to die soon.  Have some fun.”

When I feel an infection (wound or surface) I will skip a dosage. Skipping vs not skipping,  has meant the difference between quick healing of an infected wound.  And yes, I have discussed this with my rheumatologists.  Things like colds or viruses- I don’t skip unless my doctor tells me to.  Another issue is when I do need antibiotics for a wound infection,  certain antibiotics  blocked in a pharmacist’s computer system because I am on methotrexate.  One example is Bactrim.  

I had a wound infection that would not go away.  My doctor prescribed me Bactrim, but when I went to go pick it up, the pharmacist tried to replace my Bactrim with Keflex.  It’s no secret I hate Keflex.  Hours after taking it, I would get a weird taste in my mouth and just the smell of Keflex makes me gag.  Sure, itworked for me for a while, but it no longer works for me because the wound infections I get now are antibiotic resistant.  So, I politely  told the bright-eyed pharmacy assistant who was just trying to help me, to hang on to that Keflex.  I had to go back and get my doctor to override the block.  When  my doctor entered Bactrim into the system, it activated a  ”warning” built into the system to block contraindicated medications.  It blocked my Bactrim because methotrexate interferes with Bactrim’s effectiveness.  So, I went back to my rheumatologist, had her put a note in that the methitrexate had been discontinued, which it had for two weeks because when I have an infection that won’t heal, the worst thing I can take is an immunosuppressnt.  But you see, the computer had to be told that I had stopped methotrexate so it would allow the Bactrim.  And BEHOLD! Bactrim granted!  It took some communication to get the formulary corrected, but it can be done.  By the way, the look on the pharmacy technician was priceless.  A few weeks prior, we had a bit of a go round over Viagra, and I had that over ridden as well.  After getting them the information they need in order to follow my doctor’s prescription, feel an overwhelming level of satisfaction, like I should have a set of brass balls hanging from the drive shaft of my monster truck, which is super big because I am compensating for something else.

My point?  There is no way anyone can predict how our bodies will respond to medications, but we can work to prevent ourselves as individuals,  from being pigeon-holed into a treatment model that works for one group.  I have stood at many a  pharmacy window, and  glared at by pharmacy techs and pharmacists from atop their brick wall of formulary,  only to  return to their window as if I had just kicked  a twig off of my trail. Maybe it is all about how I perceive a problem.  The pharmacy saw themselves as a brick wall to save me from myself.  No one can save me from me, not even me.

One adventure with Methotrexate.

When I picked up my first prescription in 1996, to say I was frightened would be an insult to terrifying situations everywhere.  My three hour drive home was filled with thoughts of baldness, nausea and chemotherapy horror stories.  Luckily, I had no side effects from methotrexate.  My dose was titrated up to 25mg a week. My only side effect was fear.

Drinking and Methotrexate

I did experience three  Octoberfests on methotrexate,  and I survived with intact kidneys. If I could go back, I would advise me to be smart with my methotrexate.  Not to  shouldn’t skip my blood work just because I didn’t feel like fasting.  (Done that.I never said I was a compliant patient all the time.) Drink lots of water, eat healthy and pay attention.  I would tell me, “Don’t drink Dumbass.    You don’t need to live like you are dying”.  (By the way, Live Like You’re Dying is a stupid song, and one of many valid reasons I still hate country music.)  

Methotrexate is  less a big deal than you think, but it is still  a big deal. It is a very strong drug and can kill you if you don’t pay attention.  Try not to panic.   Take the usual precautions you would regarding your health like avoiding alcohol, eating healthy and by practicing safe sex.   And by safe, I mean do nothing that requires the use a net and always establish a safety word, which  should never be “ouch”,  and you’ll be fine.  Notice I didn’t advise you to use a condom, because you already are smart enough to know that.  And if you need to be reminded to wear a condom, you do not have enough life experience to be reading my blog.  

Methotrexate is one of the most studied meds for immunosupression because  it has been around so long, and used so often.   My ex-husband credits the conception of our son because I took methotrexate the year before we conceived and after trying once before unsuccessfully.  

Of course, I was not on methotrexate when I did conceive- it just helped my body. In fact, methotrexate is exactly what you do not take if you are trying to have a baby.  But taking it to slow the progression of your hard to pronounce, incurable, autoimmune disease long enough to find yourself stable without it, before trying to have a baby was a good idea for me.  I was not going   to let some degenerative, fatal and hard to pronounce autoimmune disease stop me from having a baby who will one day grow into a mal-adjusted young adult in need of therapy because of his mother’s selfishness in her 40′s.  

You are smart and you probably pay attention to what you body tells you.  I always assume people who read my posts are more intelligent than I, and I have yet to be wrong.  You’ve got dreams.  Realize them.  Overcome the obstacles.     Move the twigs out of your way and get on with it.  People will think you’re moving brick walls, and it does wonders for the ego.   You’ve got this.

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The Ice Bucket Challenge

By Karen | Filed in Sarcoidosis, Scleroderma

The Ice Bucket Challenge is going to help the ALS Association get closeer to a world without ALS.   Before you add the ice, take a few minutes and read how dumping a bucket of icewater over your head will help patients with scleroderma and other diseases, as well.  Then, enjoy your dunking!

My body has changed a lot over the last 20 years. My hands are severely contracted. I have been offered surgery to straighten my fingers, permanently and bending the top knuckles in a “hook”. I was told my hands would be more useful. I have refused this procedure more times than I can count. I refuse it because I believe that this is a plateau. Of course, I will never regain full use of my hands before scleroderma, but I still call it a plateau.  Progress is progress.  

Not only have my hands been damaged,there is scarring in my lungs.  In 2008-2009, the scarring in my lungs accelerated.  We don’t know why, but for some reason, it stopped.  The bottom left lobe is scarred, and the short answer is my lung volume is 85%.  I had been diagnosed with sarcoidosis in 2007 and was put on the biological drug, Influximib, brand name, Remicade.  It may be related to many symptoms being controlled but there is no way of really knowing, without further study.  Like ALS and cancer, scleroderma is very complicated.  All diseases are different, but none is more serious than the other.  Like everything different, we can find things in common.  By doing so with diseases, we improve care.  In other words,  patients of all diseases benefit from breakthroughs in research of different diseases.

Cancer is nothing like scleroderma, but what we have learned from cancer research benefits patients of both scleroderma and ALS.  Progression of scleroderma is slowed down by drugs that suppress the immune system.   I sometimes wonder if I’m grasping for straws, but as someone who has spent many hours sitting next to cancer patients, receiving immunosuppression drugs (aka chemo infusions, but not cancer chemo), I’ve seen enough to know that as horrible as cancer is, I have benefited more than I will ever know from past cancer patients.  Oncology nurses , who specialize in cancer care, are amazing, and I have never had to train an oncology nurse on how to put in an IV.  I’ve had to train calm down a lot of nurses many nurses because of their lack of experience starting an IV in patients with thickened, hard skin.  Thanks to an IV nurse’s suggestion, I have a port-o-cath.  It had once been suggested to me by a rheumatologist, and I refused.   I felt that getting a port-o-cath meant I was near the end.  Getting that suggestion from an oncology nurse in a room full of chemo patients,  allowed me to ask about use not just from the nurse, but from patients sitting next to me.  Now, the port I have in my chest to allow the ease of IV medication, was not designed to help patients with scleroderma.  The inspiration for use doesn’t matter, because the principals are universal.    It was put there because doctors know that a port-o-cath would  make it easier to administer IV medication, reduce  stress, infection and keep my otherwise overused veins,  intact.  Of course, my rheumatologist happily ordered the procedure for me. It didn’t matter to them nurses made it easier for me to understand, they were just happy I was taking a positive step to make my life a little easier.  And, I was really relived when I saw that my cleavage is still spectacular with a port-o-cath.  

What about long term patient care and hospice.  These things are all needed by many patients with scleroderma, but scleroderma is so rare compared to cancer if there were no cancer treatment, there would be no scleroderma care and treatment.  We have also learned a lot from ALS, or Lou Gehrig’s Disease.  Do you see the connection?  Care and so much more.

Ice Bucket Challenge

So please, take The Ice Bucket Challenge, and help to create a world without ALS.  It helps us all.  But I would be crazy not to mention that I am raising funds for the Scleroderma Foundation.  My son and I will be walking this Saturday in San Diego, California.  So please donate to ALS Assciation, then please visit my donor page and donate a dollar or two.  I’m asking for such a small donation, because there are many diseases that need curing and a dollar or two leaves you the option to donate to another association.  No disease needs more donations than any other; all of these diseases need to be cured.  In addition to research, non-profit  associations, foundations and organizations also provide doctor, patient, caregiver support and education.  We may not be fighting the same battles, but we are all in this war together.  Thank you for reading.

 

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Okay, maybe not the best, but it helps.

I started writing this blog in 2009.  If you have been along for the ride, you have seen my writing evolve from sub-par to adequate.  Now, I’m doing stand-up comedy and in no way should be promoting it, but I am telling people where I will be performing.  Why?  Because I talk about scleroderma.  I also posted this because I want to show other scleroderma patients there is hope, but you have to fight.  I did.  And now I have this warped sense of humor.  (I had the warped sense of humor before, but now I do it with more words of Latin and Greek origin.)

 

Look, I never wanted to be a “scleroderma comedian”, but with my hands, it’s really hard not to talk about it.  People have questions, and merely my medication gets a laugh because it’s so hard to believe.  But this has to start somewhere, and why not with something that creates laughter.

I don’t think having scleroderma is funny.  In fact, scleroderma is very scary to patients and those who love them.  But the mistakes I have made personally, and ways I cope with it, are funny to me.  So, I’m going to get people to laugh, and learn something, as well as show the world that with educated doctors and medical practitioners who will fight along side their patients, patients can survive.  Nothing will ever trump a cure, but for now, I’m going to laugh at what scares me.

Thursday, July 10, I will be at Aces in Murrieta, California, for open mic.  (Yes, that Murrieta.)

Saturday, July 19, I will be performing at Hot Java’s Deaf Comedy Jam in Long Beach, California.  

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Or: Please allow me to reintroduce you to my booby.  

...Well, it’s not really my booby.  It belongs to everyone.

June 24, 2014

I have been keeping this to myself for years and what a better time to talk about my fear of scleroderma during Scleroderma Awareness Month.

After my diagnosis, I wanted nothing to do with scleroderma.  I avoided support groups not only because the ones I had been to mostly consisted of grandparents, before my son was born; I did not want to see my future.  I did not want to see what happened to long term scleroderma patients.  And 20 years later, scleroderma scares the bejesus out of me.  I want nothing to do with scleroderma, and I keep on running.

Scleroderma does painful, debilitating and ugly things to patients.  And I am so afraid of becoming disfigured,  I will do anything in my power to get away from scleroderma-like activities, like asking for help.   I work hard to be able to exercise.  I sometimes injure myself doing things I prefer to do myself, than have others do for me.  Do I need counseling to work through the stages of grief to get to acceptance?

I have never claimed I don’t need psychiatric help, but quite honestly, I don’t want to accept the whole death-by-hardening-connective-tissue that the universe has in store for me.  I have accepted parts of the results of scleroderma.  Like resting when I need to; spending hours in doctors offices, labs and tests; I have a port-o-cath in my chest, and I wear clothes that show it because I want to be an example for my son;  I have moved to be closer to specialists who know what they are doing so I don’t end up dead because of  a medical mistake.  Yes, that does mean I live away from my son.  Right now, I am abusing the English language with  punctuation errors.  I can’t really blame scleroderma for that, but for our purposes in this post, I’m going to blame scleroderma.

Unless it is medically necessary, I want nothing to do with scleroderma.  But this post is not a cry for help.  I’m sharing this because of all the crazy things scleroderma has brough into my life, nothing scares me more than Juvenile Scleroderma.

Have you seen what this can do to children?  Click this Link  Take your time and read about it.  Go ahead, we’ll be here when you get back…

Why can’t we do anything to stop this in children?  Oh wait, we can.  We don’t have a cure yet, but there are organizations who have researchers working on ways to treat it effectively.  There are two organizations, one in La Jolla, and the other in Michigan, who have found a way to stop fibrosis and reverse it.  There are organizations raising funds for scleroderma research with comedy fundraisers, galas, and walks.  there are individuals having bake sales, and it will never be enough until rheumatologists all over the world can recognize early symptoms to give patients a better chance with early diagnosis and treatment; and of course, a cure.

We have a lot of work to do, and I need your help.  Please learn about scleroderma please go to an event or make a donation for a cure.  It makes me furious that all diseases without effective treatment, must seek funds for research and treatment.  There are some pretty horrific ones out there, even more terrifying than scleroderma, but I’m not writing you about those diseases.  I want you to know how terrified I am of scleroderma, and even more terrified that people are being diagnosed with it every day, and then must wait to see how exactly scleroderma will change their lives forever.   Scleroderma is different for every patient.  Symptoms of scleroderma can exist as separate diseases.  How messed up is a disease that some components that make it a disease are other diseases?

In order to make my point, I have brought back our pal, Drew, The Blue Footed Booby.  He made his debut last year. When you see Drew, please help by sharing his picture and help share the word about scleroderma.

Thank you.

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No Thunder, Thud

By Karen | Filed in Uncategorized

Well, the Thunderclap did not happen, but it wasn’t a complete failure.  Now I have a post in my blog I can update and add to whenever I wish.

 

A very heartfelt thank you, to all who participated.    There are so many events going on this month, I will see you around  in many of the great social networking campaigns on the interwebs!

Now, back to writing whatever I want, and sharing stuff to help raise awareness and funds.  Happy Tuesday All!

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No One Wants Scleroderma

By Karen | Filed in Scleroderma, Uncategorized

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.

 

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Updated June 5, 2014.  We are a go for Thunderclap.  Now, we just need 100 participants to make it happen.  Can I count on you?  

Last year, we attempted to get #scleroderma to trend world wide on World Scleroderma Day. This year, let’s Thunderclap, and see if we can make even more noise than last year.

On June 17th, I have scheduled our “practice” Thunderclap.  I am proposing this practice Thunderclap, so we can be most effective on World Scleroderma Day, and  we can all see  you Thunderclap will work.

(Click to visit Thunderclap now, or click link at end of post.)

Like everyone who has scleroderma,  I have found trouble explaining scleroderma, simply because of it’s name. I am asking you to join me in a Thunderclap that will  provide links to  research, education and advocacy, non-profit foundations, and their own definitions of scleroderma.   This Thunderclap will not only help define scleroderma, it will direct people to legitimate organizations without bias.  We are in this together.   Together we are stronger and louder. 

What is a Thunderclap? 
Thunderclap is a crowd-speaking platform that  helps us be heard by saying something together.  I am asking you to join me, in a loud thunderclap to #EndScleroWhat.  June 17th at 8:05am PDT, is when the this first thunderclap will be scheduled.  This Thunderclap will include a definition of scleroderma in my words, and links to foundations and organizations pages to their definitions of scleroderma.  If you have a short definition of scleroderma you find helpful and wish to share it, please post it in the comments section  because that will help others.

This thunderclap will contain a patient definition of scleroderma, followed by a list of links to foundations with the following criteria:

1. Non-Profit

2.  Patient education and support

3.  Medical practitioner education

4.  Conduct or participate in research.

Our #EndScleroWhat Thunderclap Content is between the lines.  You may find Thunderclap post posted on May 31, 2014.  I cannot do this alone.  I need your help.  Please comment or send me a message.  Your feedback is important.  I want to know how I can improve this message in any way.  If you see typos, don;t be shy to tell me about them.  Thank you in advance.

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Medical practitioners, patients and those who love patients, often hear “Sclero-What?”, when trying to educate others.  Please help us to end “Sclero-What?”, by joining our Thunderclap to #EndScleroWhat at 8:05am  June 11.

Here is my brief definition:

Scleroderma is an autoimmune disease in the same family as Lupus and Rheumatoid Arthritis. Scleroderma is a progressive degenerative disease that  attacks connective tissue anywhere in the body, like  skin, internal organs and blood vessels.

For more information, please visit one or all of the links below for an even more detailed definition and list of symptoms.  

Non-Profit Scleroderma Resources that provide education, support and participate or conduct research.  

Scleroderma Foundation

Scleroderma Research Foundation

Scleroderma Care Foundation of Trinidad and Tobago

Johns Hopkins Scleroderma Center

FESCA

Please click the links and follow them on Facebook and/or Twitter.  Learn about scleroderma and share information to help us #EndScleroWhat.  We are in this together and acting together will make us louder.  Let’s make some noise about scleroderma and share this post!

Please note:  The Mighty Turtle is not affiliated with any organization but Bounce to a Cure.  All resources are provided void of bias and in no particular order.  

Click here for to view Thunderclap.

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