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.

____________________________________________________________________________________
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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Scleroderma Awareness Month, Day 2

By Karen | Filed in Scleroderma

People with chronic illnesses often have spiritual awakenings and find their true calling.  Me, I have only one regret:  That I never worked at Hooters in my 20′s.  I would have made a killing.

I have also learned, I hate being around sick people.  I have met some amazing people who have scleroderma, or diseases like it.  I just wish we had met in paddle boarding or spinning classes.

I’m not going to clutter your day with a long post.  You have other scleroderma posts to read, and honestly I’ve been writing the same stuff for years.

Yes, yes I did rip this off from Google images.  Maybe someone will recognize it and try to sue me.  Scleroderma could really use the publicity.  Maybe I should start looking for a hobby.  Enjoy the tiny picture!  I’m going to pretend I;m the one on your right, in the picture.

This looks a lot more fun than a support group.

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Scleroderma Awareness Month

By Karen | Filed in Scleroderma

 

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.

 

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Scleroderma Definition & Resources

By Karen | Filed in Scleroderma

Having trouble explaining scleroderma?  Here are some links to help, and an example of a definition I use.  Here is some help to #EndScleroWhat 

Medical practitioners, patients and those who love patients, often hear “Sclero-What?”, when trying to educate others.

It’s hard to explain scleroderma to someone who has never heard about it using a brief definition.   Here is what I have been using:

“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.”

That is just my definition.  I would love to read how you explain scleroderma!  Please leave it in comments-  it may help others.  Mine is not the only definition.

For the best 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

Raynaud’s & Scleroderma, Ireland

Scleroderma Care Foundation, Trinidad & Tobago

Update, June 12, 2014
A few days after I started a Thunderclap, I found Scleroderma Aware, a website where three organizations have joined to raise awareness.  You MUST check it out, and pledge take the pledge to tell someone about scleroderma.  Please visit, and join this great social networking campaign!  

Did you know there are components of scleroderma that can exist as diseases all on their own?  Here are organizations researching and assisting patients. 

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

Online Patient Support, closed peer to peer communities.  Free to use.   

Inspire

Treatment Diaries

There are many blog posts that have inspired and motivated me, but none like The Spoon Theory, by Christine Miserandino.  She is a lupus patient and I found her post helpful to describe energy levels with a chronic illness.  Scleroderma is one of many chronic illnessness without a cure.  Reading this opened my eyes to the idea that although no one responds to any crisis the same way, we have a lot in common.  No matter what the diagnosis.  No one blogger, or community has all the answers, but we do have a lot to learn from each other.

The Spoon Theory

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!

Thank you in advance!

This post was created for a social network campaign to provide a list of different organizations to accompany a Thunderclap  during scleroderma awareness month.  This page  will be updated to add groups.  No one listed on this page has paid, or made any sort of contribution to be listed here.

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 to participate in Thunderclap on 6/17/2014

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I have written many positive things about the care I have received at  VA hospitals.  There are some amazing people who work there, and listen to patients.  I have received medication that would not have been available to me because of cost,  like Viagra and Remicade.  I would be missing fingers and toes had it not been for the VA.

I have experienced and witnessed backlogs in the VA Health Care System since 1994.  What I find so shocking, is that in 2014, people are just now learning this, or at least willing to acknowledge it.   I was at the he Loma Linda, California VA, 2001-2013.  During the ramp up to Iraq, veterans were waiting more than three hours to see a doctor, two hours to get a prescription filled, and stand in line over an hour for travel pay, while we were waiting, Fox News would be on TV, making a case for war in Iraq.  Veterans with their respective war or command ball caps, would gladly talk about how we needed to go to Iraq.  How easy the war would be, and how Iraqi oil would pay for the cost, yet they sat there as casualties of prior wars, waiting ridiculous amounts of time to have their continuing war wounds treated and were so willing to put men and women in harm’s way,  with a back-logged Veteran’s System.  To say I was puzzled, is an understaement.

I was receiving my health care at the VA Facility in Loma Linda, and locally in Murrieta, California, thanks to “golden insurance” provided by our small business.  Both health care systems were crowded.  Murrieta had a population of about 39,000 when we first moved there in 2001.  By 2004, the population had jumped to nearly 90,000.  I remember being in the ER at my local hospital in 2003 during one of my visits, when my blood pressure was high, and there were four of us in one room.  There were pregnant women in the hallways.  I was waiting to see them stack us in bunk beds.  The local healthcare system had been flooded with new families moving to Temecula Valley,  attracted by affordable homes.

I bring the overcrowding of private hospitals into the conversation because I saw both systems become overcrowded because of poor planning.  The community of Temecula Valley, built thousands of houses, but forgot to have infrastructure in place.  just as the United States started two wars, without preparing for service members when they became veterans.  There was a whole lotta of cheering, flag waving and saber rattling, but no plan.  We didn’t learn from Vietnam.  We didn’t learn from Desert Storm.  We were a country cheering about how great we were, and “getting” bad guys.  I even quit listening to Howard Stern,  because he said, “Gas prices will pay for the war.”  I was making my bed I heard that.  I remember what color sheets I was putting on the bed.  I was placing the flat sheet, folding it down, heard what he said, stopped what I was doing, walked over and turned off the stereo.  I don’t know if he was kidding.  Maybe I was just hypersensitive.  Maybe I was just the hysterical female I was used to being called when I was in the Navy, and at nursing stations in VA hospitals.

And Howard Stern wasn’t saying anything that wasn’t being said all over  radio, television and at kitchen tables.  Eventually, I discovered progressive radio and it gave me hope, but over the years,  statements that could fit on a bumper stickers seemed to prevail over facts.

We have a long way to go in order to solve veteran’s healthcare.  This is not news to patients like me, but it amazes me how upset people are getting now, the people who knew the problems of overcrowding existed, and experienced it first hand.  Don’t get me wrong, I’m thrilled people are finally upset about this.  Over the years, I have learned to live within the system by speaking up and crashing clinics like college classes.  Veterans are finally speaking up about backlogs.  I’m not sure if I am angry because it’s taken so long, or because it seems to fit the narrative.  I just hope now that people are talking about it, it will actually receive the change needed, or just be part of political campaigns and fade away after elections.

 

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