The Power of Us. We're going to make #Scleroderma trend world-wide on Twitter.

Even crazier, we are going to do this without spending a single cent.

OUR OBJECTIVE

Scleroderma will trend on Twitter world-wide, June 3, 2013, not by tweeting the same thing over and over.  We will do it with tweets, retweets and modified tweets.  This is the campaign I am  proposing.  This is not my campaign.   This is OUR campaign.  This is a world-wide campaign.  When I refer to us, I mean we, Planet Earth.

The trend will be #scleroderma, but there are many associated conditions I am asking that we all unite to encourage patients to reach outside the parameters of their diagnosis for information.

For example: Lets say you are diagnosed with Lupus.  You find that you are short of breath and your fingers are getting numb for no reason.  There may be a secondary diagnosis that could lead to effective treatment, but maybe you live in an area and don't have access to specialists familiar with  associated conditions.  Symptoms are written off as just "part of your Lupus", but there may be treatment used for other conditions that may help these symptoms.  What I am trying to say is that we need to change treatment of these diseases to follow the route of progression of symptoms, not the parameters that confine us by diagnosis (For God's same someone please comment and let me know if this makes sense.  I'm working without a net here.  Thanks!)

You've read this far, so I'm going to assume that you are in.  If not, allow me to apply the "Peter Griffin Persuasion"
Come on!  Come On!

Okay, good.  Moving on...

OUR MESSAGE

This campaign will have a consistent message of awareness, education and humor.  Here are suggested ideas:

1.  Facts about scleroderma.

2.  Funny anecdotes of observations by those touched by scleroderma.

3.  Memorial tweets always encouraged.  Share a happy memory of someone you lost to scleroderma.

4.  Pictures from walks or fundraisers.

5.  Retweets and Modified Tweets of facts, information or funny stories.

6.  Be positive.
Avoid posts like: "Scleroderma sucks, it kills people", or  "Scleroderma is a slow, painful disfiguring death."  We already know this.  Let's get the facts out in a positive way.   There is no argument those quotes are true, but by staying positive, we inspire and educate.  Yes, scleroderma is scary, but sceroderma patients are not alone.  Let's not teach with fear.

7.  Do not tweet to celebrities or anyone in a spam-like manner. (edited 5/4/13)
If you have a celebrity you hope will participate, try a friendly email and ask them.  (You know, If I could get a celebrity to comment on this, that would be awesome.)  Celebrities are people who receive hundreds of tweets a day asking for help with causes.  A friendly email is a more personal way to ask.  An email will put a face on your cause.  And if you receive no response, do not shame the celebrity.  Please.  I know many people will tweet friendly, but I want to just set some guidelines. I have seen some weird stuff on Twitter.

8.  Don't tweet the same tweet over and over.
Yes, getting Scleroderma to trend worldwide is all about numbers, but the purpose of getting scleroderma to trend is raising awareness and education.  Let's make every tweet count.  Yes, numbers help, but getting just one person to read our tweet helps educate about scleroderma.  In short: Numbers good.  Education better.

DOING THIS AT NO COST... TO ANYONE

June is Scleroderma Awareness Month.  This Tweeting Event on June 3 is to get everyone in on it.  non-profits need to compete for funds.  It's not a bad thing, it just is.  Because non-profits can't always work with other non-profits to share information having this open event benefitting no one organization makes everyone "Free to move about."

Shall we give it a Name?

Twitter is like a giant sandbox where the whole world is welcome to play.  So, Let's Play in the Sandbox for Scleroderma.  It doesn't matter what your diagnosis is.  Breakthroughs in research benefit all chronic illnesses, deadly diseases and ways of caregiving.  After June 4, 2013 if others find this model adaptable to their cause, I hope they will use it.  This is a project does not belong to The Mighty Turtle.  It is for us all because we are in this together, and together we are stronger.

You don't have to join to participate, but if you wish join the event, here it is on Facebook, or ask to be added to the group Let's Play! on Twitter.

So, If you skipped to the end:

Tweet any time between 12am,  & 11:59 June 3, 2013 Pacific time.  Tweet as often or as little as you like, something relevant with #scleroderma in it.  Let's Play in The Sandbox For Scleroderma and get #Scleroderma to trend WORLD WIDE on Twitter.  I will be posting tweets about scleroderma every 10 minutes- maybe faster depending on if I can stay out of "Twitter Jail".  RT what I tweet or tweet your own story, picture or whatever with the hashtag #scleroderma.  If you don't tweet you can be a great help by  sharing this on FB before and the day of the event.

Remember:  Do NOT tweet celebrities and keep it positive.  No money will be spent to advertise this event.  Period.  We can do this with the power of us.  Let's set the trend June 3, 2012.

We can be the difference by wearing a T-shirt during a run or with one tweet. This is The Power of Us. We will never know the true reach of a simple gesture that can mean the world to another.

Jedi Wound Care

Jedi Wound Care

Last night, there was a "scab" on my middle finger  MCP.  The skin around it was swollen and red.  It was hot to the touch.  I decided to use  non-stick gauze cover it and applied antibiotic ointment.

I've Been Slimed!

Two house later, I took a peak and there was - for lack of a better term, green slime.  I removed the dressing and prepared myself for a relaxing soak.

De-Sliming Protocol Engaged

I filled  bowl with warm water and hydrogen peroxide.  I soaked for about ten minutes.  The slime was drawn out by the warm water and the peroxide cleaned the tissue.  Note: Never soak in straight peroxide.  Always mix with water.  Ask your doctor or a wound care health practitioner at your next doctor's appointment for advice about soaking.  It's not that anyone is withholding secrets: Appointments have time limits.  Put this question on your list.

I soaked my hand for almost 10 minutes.  I took it out of the water frequently because I was curious and impatient.  That's how I made the time pass quickly.    When my hand was immersed in the water/peroxide solution, I could see the "slime" float away from the wound like wafting cigarette smoke.

When finished with my soak, I rinsed with sterile saline solution.  (Warm water will do if no saline)  I gently dabbed away remaining slime that was now yellowish-white, and allowed it to dry for about 45 minutes.

That's A Wrap People

It's not always possible, but after soaking if you can let the wound dry out before covering, skin is less likely to break down.  Don't sweat it if you need to cover it and go.  Just use non-stick gauze with no ointment to let the gauze absorb moisture.  Bring some ointment and supplies for a clean dressing change with ointment later.

Once the wound is dry, apply ointment to gauze straight from tube.  By applying to gauze, you are not compromising the ointment by applying directly to tissue, and you won't need to use a cotton swab.  A cotton swab to the wound may not sound "traumatic" but it has been my experience, the less I touch the wound, the better.

So, a dollop of ointment to the gauze, then apply tape to back of gauze and smooth tape gauze side down over wound.  If you have Colban (stretch it- you dont want it to be constricting.) or a thin way to wrap the wound, great.  I have uses a thin ankle sock with holes cut for fingers and thumb when I don't have something.   I roam around the house in tape & gauze, but when active, I wrap it for extra protection.

The Law of Attraction

I don't know about you, but when I have a healing wound, if I'm going to bump into something, I will bump it with my wound.  Yep.  I have tried to be more aware and cautious, but that only seems to make it more likely to bump or bang it into something.  I call it The Danger Prone DaphneEffect.  So, rather than fight it, I wrap it.  So, yeah, the sock is not crazy.  Ya gotta do what ya gotta do!

And now, some before and after pictures.  Try not to be eating.  If you have question's please post them in comments.  If I don't know the answer, I will find one or send you to a source that could.  

See the hole? That is surrounded by tissue that was once swollen, then drained by soaking. Notice the redness around the tissue surrounding the hole. Never, ever puncture a wound. Soak it and let it drain. The implement used to "break" it will introduce bacteria that can make it worse. This picture was taken last night. The anatomical location is my middle finger knuckle attached to my hand or MCP. Still wondering, go to link provided for hand anatomy.

This morning: The tissue is not as yellow as it appears. I left these photos unedited because it did not help. The redness present last night around the swollen tissue is gone. The area is sore, but only if I press on it, not to the touch. It is also no longer "warm". When I removed the dressing this morning, the tissue was wet and beginning to break down, so I have left it to air dry this morning to allow my skin to regain some integrity before showering. After I shower I will let this air dry for an hour before rewrapping and setting out for my active day.

Hand Anatomy 

For more information about Scleroderma and related conditions, please visit:

Scleroderma Research Foundation

Scleroderma Foundation

Scleroderma Care Foundation

FESCA

The Raynaud's Association

Pulmonary Hypertension Association

Pulmonary Fibrosis Foundation

And a word from our sponsor: Me

Votre Vu

I'm A Guinea Pig & I'm Okay With It.

Edited 10/31/2013

Medicine is a practice.  Scleroderma, Sarcoidosis and many diseases are not well know by many doctors.  It's important to find a doctor with experience with a chronic illness like scleroderma.  If you have a doctor in your area, wiling to consult or allow care management by a doctor who has experience,  you have hit pay dirt- but that's a whole other post.  

So we have doctors working with us, as well as those who love us who aren't doctors and couldn't pass an audition to play one on TV.  It doesn't matter, chronic illness or not, we get a lot of unsolicited advice and some of it is just hilarious.  

When I was pregnant, I had heartburn.  According to my Aunt Enes,  I was getting heartburn because my baby had hair.  It couldn't be the baby  kicked my stomach around like a flat, acid filled soccer ball.  No.  My baby had hair.  Which I guess is rare for mammals?

Okay, bad example because she gave no advice, just her opinion, but it's always a great story.  She tells me what she believes, because she cares.  Don't we all have people who tell us things because they care.     Yes, we do.  Even you, J.D. Salengers  -if you lock yourself away, your inner voices will get to you, eventually.

Here is a great example of some bad advice I received in the 90's:

"You know Karen, you should try cayenne.  It's great for circulation".

Yes, it sure is.  Not only is it great for circulation, it's a great way to exacerbate reflux, a common related condition to scleroderma.  Oh yeah.  Good times.  Forest Gump once said to Jenny, "Sometimes, there just aren't enough."   He was right about that.  Yep.

Out of all the advice and recommendations we receive, no advice should be listened to and tried more than the advice of our own doctors.  Sure, we all run into quacks, but we shouldn't be discouraged.  Most doctors got into it because they wanted to help people.  Some loose their way, but many truly want to do their best.

Listen to fellow patients, talk with friends about your treatment if you are about to try something new.  Go over the risks and benefits.  ALL medications and treatments have side effects.  You will never know how they will effect you, if you don't try them.  But before you do try a new treatment, do your homework.  Seek out fellow patients and learn from their experience.  Know what you are about to put into your body.  A chronic illness has a great way of making people feel helpless, but we are never helpless.  We may not get the outcome we want, but we may get the outcome that works, even if it takes a few adjustments.

So, if you skipped to the end:

We all get lots of unsolicited advice.  Of all the advice we get, the source we should listen closest to is our doctors and medical practitioners.

Yes, we have to try many things before we find what's works and you'll ask, "What am I, a guinea pig?!

Don't despair.  Here is Randy, in "Honebadger Narrates The Guinea Pig" - Oh how precious!

The "Bromance" between My Vanity and My Lungs

 have pulmonary fibrosis with my scleroderma.  I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me.  I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them.  My lungs used to complain, but now they are in compliance.

It used to be really hard to exercise.  Walking across the room took effort.  Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem - sarcoidosis- was identified as the culprit, things got even better.  After years of difficulty breathing, I was finally diagnosed with sarcoidosis.  The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom.  But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell.  This restricted movement of my lungs so they could expand, thus creating difficulty breathing.  Now I am on the right medication to keep those granulmas in check.  Stress does make those granulomas swell, so I also have sedatives handy.  How can I face what I need to do in any situation if I have trouble breathing?  Don't judge, it works.  I have to be able to breathe or defeats the purpose- of everything.

Now, back to the pulmonary fibrosis:  That's courtesy of scleroderma.  My lungs are scarring, but I am keeping my lungs working by making them work.  I have a use it or loose it mentality.  Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental.  Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies.  If you tell yourself your dying, that's true whether we have a positive attitude or not.  We're all going to die eventually.  Some of us just have an idea how.  And even that's inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that.  So, can we really control what life throws at us?  For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no.  But we can control how we face them.

So, how am I facing the ongoing progression of my lungs scarring into fibrosis?  I am working to sculpt my ass into perfection.  That's right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine.  And I don't mean unhealthy looking either, I want a fine ass I can be proud of.  The side effect:  I am eating healthier- no, I'm not starving myself.  I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday.  Nthing suer complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.

Back in 2005, I stated with deep breathing.  I even wrote a post about how deep breathing is exercise.  This is an updated version.  I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress.  My condition is stable with medication, but I know I need to do more than medication.  Not just for my symptoms, but for my own sanity.

Some of you may not know this, but I have a tendency to be a control freak.  When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them.  I continued to drink and occasionally smoke.  Then, once I quit those, used my energy to point out what I perceived to be everyone else's problem.   Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane.  (Determination of my sanity is entirely subjective by my own observations.) 

Then came a time when I took a look at what my body is doing and for lack of a better term, freaked the
f**k out.  Then, I remembered the most important thing I learned from The Hitchhiker's Guide to The Galaxy and stopped panicking.  Reading the book Illusions, by Richard Bach has helped tremendously as well.  My point is, it's all about perception.

Everyone needs a goal. This one may be a little vain, but it's more fun to work for this than to think about keeping lung tissue moving to keep it from hardening. Enjoy the eye candy borrowed from @regretfulmom.

So, the family friendly term for exercising is: I do it for my health.  The truth is, I'm a bit vain and I'm using that to motivate me to exercise.  I want a booty I can bounce a quarter off of (see, vanity isn't all bad, it helps me breathe.) The "secondary" benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake.  Right now, I just want to look good on the beach.  Because that's where I want to be:  Living in the now.

The "Bromance" of Vanity & My Lungs

I have pulmonary fibrosis with my scleroderma.  I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me.  I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them.  My lungs used to complain, but now they are in compliance.

It used to be really hard to exercise.  Walking across the room took effort.  Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem - sarcoidosis- was identified as the culprit, things got even better.  After years of difficulty breathing, I was finally diagnosed with sarcoidosis.  The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom.  But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell.  This restricted movement of my lungs so they could expand, thus creating difficulty breathing.  Now I am on the right medication to keep those granulmas in check.  Stress does make those granulomas swell, so I also have sedatives handy.  How can I face what I need to do in any situation if I have trouble breathing?  Don't judge, it works.  I have to be able to breathe or defeats the purpose- of everything.

Now, back to the pulmonary fibrosis:  That's courtesy of scleroderma.  My lungs are scarring, but I am keeping my lungs working by making them work.  I have a use it or loose it mentality.  Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental.  Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies.  If you tell yourself your dying, that's true whether we have a positive attitude or not.  We're all going to die eventually.  Some of us just have an idea how.  And even that's inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that.  So, can we really control what life throws at us?  For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no.  But we can control how we face them.

So, how am I facing the ongoing progression of my lungs scarring into fibrosis?  I am working to sculpt my ass into perfection.  That's right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine.  And I don't mean unhealthy looking either, I want a fine ass I can be proud of.  The side effect:  I am eating healthier- no, I'm not starving myself.  I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday.  Nothing super complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.

Back in 2005, I started with deep breathing.  I even wrote a post about how deep breathing is exercise.  This is an updated version.  I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress.  My condition is stable with medication, but I know I need to do more than medication.  Not just for my symptoms, but for my own sanity.

Everyone needs a goal.
It's more fun to think
about working on my figure,
 than keeping lung tissue
moving to keep it from
hardening.
 Photo by @regretfulmom.

Some of you may not know this, but I have a tendency to be a control freak.  When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them.  I continued to drink and occasionally smoke.  Then, once I quit those, used my energy to point out what I perceived to be everyone else's problem.   Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane.  (Determination of my sanity is entirely subjective by my own observations.) 

Then came a time when I took a look at what my body was doing and for lack of a better term, freaked the f**k out.  Then I remembered the most important thing I learned from The Hitchhiker's Guide to The Galaxy and stopped panicking.  Reading the book Illusions, by Richard Bach has helped tremendously as well.  My point is, it's all about perception.

So, the family friendly term for exercising is: I do it for my health.  The truth is, I'm a bit vain and I'm using that to motivate me to exercise.  I want a booty I can bounce a quarter off of (see, vanity isn't all bad, it helps me breathe.) The "secondary" benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake.  Right now, I just want to look good on the beach.  Because that's where I want to be:  Living in the now.