Getting Scleroderma to Trend on Twitter is Not Just About Scleroderma

I am honored that The Pulmonary Hypertention Association has posted what I wrote about this monday’s upcoming Twitter Event: To get #scleroderma to trend world-wide.  There are many overlapping and associated conditions.

Please visit their Associated Condition Patient Blog! 



I know that you already knew this about me. This also describes you!


Yes, It Looks Scary, but it Will Grow Back…

I’ve had a wound /ulcer /hole in my knuckle for a few weeks now.  I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.

I have to say, the hole was huge two  days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely.    Inside the hole it’s just gross, but very clean and rarely oozing.  With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words:  I still need to go before the Jedi Counsel.

For those of you experiencing ulcers from impact, calcinosis or Raynaud’s, I’ll post pictures of the wound progression in Pinterest.  These wounds can be scary and insanely painful- I don’t have to tell you that.  I want to post them so you know that you are not alone.  When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally.  Not that these wounds are normal.  I do have a choice to avoid them.  I live alone and I don;t like asking for help and I love to get  out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still.  Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care.  I have accepted it as a very painful inconvenience.  I get a sore, take care of it and roll with it as it heals.  I can focus on how much it sucks, or I can tale care of the wound and focus on life around me.  It took years for me to get here.

A few of my favorite things… and I don’t feel so bad…


If you are new to these ulcers, learn to take care of them.  Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape,  Colband and cause.  Yes, stockpile and squirrel away.  Never  turn down free wound care supplies when you can get them.  Saline solution is outstanding for  rinsing wounds.  Saline filled syringes can be reused to help rinse.  In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going.  I am to go before the Jedi Counsel for guidance.

Have a great day everyone!



PS:  instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them.   They will be up Saturday, but connect with me on Pinterest if you happen to be there.

The bandages always make it look bigger than it really is.  This is quite comfy.  

Scleroderma, Pulmonary Fibrosis, Sarcoidosis; Need Box Wine.

two kids buried under paper work and a lap top with the note: help me!

Has anyone seen the kids?

Well, because of my meds, obviously box wine is out of the question: But a girl can dream. (Sigh).  I set out to make this post about why a patient like me with scleroderma, Sarcoidosis and pulmonary fibrosis would attend a health and fitness convention, then I realized the answer was obvious: Health and fitness make my quality of life better.  So, if I stopped here, that would be one short post, so I will tell you more.

On September first, I made a commitment to meditate every day for 40 days.  If I skip a day; no matter what, I must start over at day one.  So, here it is October first and I’m on day one- again.  There is hope I will make it to day two tomorrow, but it’s still early, but  I wouldn’t put money on it today.  Tomorrow, that;s another story.

Meditation and Deep Breathing Helps: But you have to do them in order for it to be of benefit.
The great thing about the meditation I am (attempting) to practice , is that it involves deep breathing based on Kundalini Yoga practice.  Back when when I did yoga consistently, the type of yoga did not matter; be it Kundalini, Anusara, Vinyasa or yoga on the fly: I was breathing and moving better.  Scleroderma, Sarcoidosis and the effects of Pulmonary Fibrosis were not dominating my life.  But now, as I continue to slack in my practice, I feel the effects of fatigue.  If feels like my lungs are not exchanging oxygen as effectively as they could.  My last Pulmonary Functions test showed that my oxygen exchange improved with the use of albuterol.  Now, albuterol and I have a rocky history and although it offers immediate improved air exchange, the side effects cause other problems that keep me from breathing properly outside of a clinical setting.  The only way I can describe what albuterol does to me is this:  It’s like doing cocaine without the euphoria. It makes me climb the walls; resulting in anxiety, panic attacks, swollen thoracic lymph nodes and the problems those results cause.  This actually defeats the purpose of opening airways because those side effects cause me to get LESS oxygen into my lungs.

No Snakes On A Plane Here
By the way, I tried to find a link about pulmonary fibrosis and albuterol that would not scare the begesus out of my family.  Here is my statement to calm everyone down:  My condition is stable. Pulmonary Fibrosis is in the lower lobe of my left lung and there is a little in my right.  It may be right or left- I always get it confused, but you get the point.  I have fibrosis and restricted alveoli  due to inflammation.  My lungs are at 85%, which is not bad for someone with Pulmonary Fibrosis, 20 years of Scleroderma and let’s not forget about the Sarcoidosis.  So, please relax.  There are no snakes on this Monday to Friday plane. (Yes, there is a clean version) I’m stable, mobile and have lots of life left in me.  Okay, so now that we have that out of the way:  Because the Albuterol improved my lung function, (numbers) my Rheumatologist at UCLA recommended we try it because if it helps, it’s worth a try.

Albuterol is not my friend.  It helps me breathe better, but is counter productive because of the stimulant effect it has on my system.  I have a history of anxiety.  I used to get panic attacks so bad, the granulomas (sarcoidosis) in the lymph nodes in my chest would enlarge, resulting in restricted movement of my lungs because they could not expand.  It would happen without anxiety, but because of the right medication, my condition has stabilized. Like many autoimmune or chronic conditions, stress can cause a flare.  Sure, albuteral would improve my numbers, which would be helpful if I the side effects defeated the purpose of even taking it because of the anxiety from the stimulant effect it has on me.  Our solution to this quandary? Achieve our objective of open airways with the newer, more expensive treatment, titotropium bromide inhalation powder (brand name Spiriva).

For those of you who are not aware of the excellent healthcare equivalent to that of Dick Cheney’s: I am a 100% service connected veteran with Medicare.  That means my specialists at the Veteran’s Hospital,  consult with my specialists at UCLA because the specialists at the VA have no idea what to do with me.  They are great doctors, because if they don’t know the answer, they will find a way with a referral to a specialist outside the VA.  (Really, can you count on more than one finger how many  patients you know with scleroderma, sarcoidosis, pulmonary fibrosis who test positive for rheumatoid arthritis AND have a stable condition after 20 years (with meds)?- Me neither.)

Veteran’s can have specialists consult with specialists outside the VA Healthcare System, and because I qualify for medicare, my doctor’s visits to UCLA are 80% covered by Medicare.  Because I have no other insurance,  medicare approves many things without having to fail three times befroe getting the right treatment that’s more expensive.  Same with the VA.  The thing is, as our own advocates, we need to communicate with our doctors, encourage and by all means ask to go outside the formulary when it is necessary. (Don’t be willy-nilly about it.)  Good doctors will advocate on your behalf  to go outside the formulary  Restrictions, of they have the evidence that skipping formulary treatment  will avoid unnecessary complications.   This is where being your own best advocate, well read and have a great communication with your own medical team is priceless.  (Nerds. I guess I will have to write how to get there with as few breakdowns as possible.  -Okay, coming soon- I promise!)

Okay, so what started as an announcement, has turned into an update of my meds, ways to go outside the formulary and being your own best advocate.  I hope my update- okay let’s be honest, my rant has been helpful and maybe even sparked a few questions.  I hope you will ask questions, or leave comments at the end of this post.  I am most inspired to write by anyone with questions or comments.

Now, back to my original goal of this post; my announcement.  I will be attending the Body 2.0 conference in San Francisco October 7th as a Health Activist and contributor to WEGO Health.  Body 2.0 is a health and fitness expo for anyone interested in maintaining or  improving health and fitness.  So there you go.  We tool a long car trip to get here, but that’s what’s on the agenda this week and next.  preparation, travel, relaxation then health activism.  Stay tuned to keep up to date on what’s new in fitness & health, WEGO Health and how what a patient can benefit from a health and fitness expo.  We may be fighting for our lives, but learning what we can do to maintain health between battles or during, can benefit you and someone like me with multiple diagnoses like oh, I don’t know; scleroderma, sarcoidosis, pulmonary fibrosis, contracted hands, limited range of motion… Do I really need to keep going.  Just stay tuned, and if interested, visit WEGO Health if you would like to attend Body 2.0, test some products or learn from health activists.

To keep with the theme of fitness for Body 2.0, There’s a new version of Ice, Ice Baby for Zumba.
I thought you might enjoy Jim Carrey’s version from In Living Color 


Scleroderma on the Fly: Episode1

This is a post contains a link to my UTube Channel for my video series:

Scleroderma on the Fly: Episode 1. What is Scleroderma?

Scleroderma on the Fly.

Please click here to watch Episode 1 “What is Scleroderma?” 


I mention my secondary diagnosis of Sarcoidosis.

To clairify: having more than one autoimmune disease is not uncommon.  To submit questions for future episodes, please go to the contact section and submit questions, tweet them to me or post on Face Book.  Please subscribe to my UTube channel to be notified of new episodes.

Thank you for watching and sharing this video.  I hope you will find the information easy to understand and easy to talk about to others.  My goal with this series is to teach all interested to be able to talk about Scleroderma  without receiving glazed over blank stares.

Please give me feed back if I am unclear about any topic.  No question or topic is off limits.


Spoiler Alert! The First in a Series of Scleroderma Surprises: Raynaud’s Phenomenon.

If you would like to be surprised about some weird things that MIGHT happen to you as a Scleroderma patient this post is not for you.  In addition, if you are  enjoying a meal or snack and are a bit squeamish, I recommend you finish eating before reading.  You have been warned.

So, you have already experienced the biggest surprise of your life, you have Scleroderma.  It was not much of a surprise something was wrong and there had to be a name for it.   You just had no idea it would be something most people have never heard of, can define or pronounce properly.  The good news is, if you like surprises, then Scleroderma is the gift that keeps on giving.

Please remember, I was diagnosed a long time ago.  Back in those days, Pluto was still a planet, Seinfeld was new, and OJ had yet to make car chases a national pastime.  The things that happened to me are based on medical treatment from that time period.

Thanks to non-profit organizations like the The Scleroderma Research Foundation and the  Scleroderma Foundation and the research and education they fund,  the condition I will be describing is treatable and preventable  If things happen you can’t control, as they are will, remember one of the most helpful things you can do is remember that Scleroderma is tough, but learning to laugh at what scares you makes it easier and it will only make you stronger.

Raynaud’s Phenomenon: Surprise!
Normally, when we are cold, the muscles around our blood vessels gently contract and restrict blood flow to the extremities to preserve blood flow to vital organs.  This response is controlled by the sympathetic nervous system known as part of a “fight or flight” response.  Raynaud’s Phenomenon is when the muscles around the blood vessels respond to cold not by gently contracting, but by contracting so hard and fast, blood flow can be completely stopped in an extreme Raynaud’s attack.  When I think of the muscles constricting my blood vessels, I think of Homer Simpson’s discipline technique with Bart that usually begin with, “Why you little…”.  (Yes, I picture a tiny Homer Simpson choking my blood vessels with tiny four-fingered animated hands.)

With this natural response gone wild, your extremities will do some crazy things.  For example, your fingers will begin to feel tingly and numb.  Then they will turn red, white, and blue.  It almost sounds patriotic, doesn’t it?  I could say it makes you truly American, but Scleroderma has no international border.   When blood is unable to get to the fingertips, skin cells begin to die, but before this happens, there are now medications available to open the blood vessels and bring blood to those malnourished cells.  If this response does not respond to treatment or is allowed to progress untreated, sores will begin to appear.  These sores can last for weeks or months depending on care, or just how stubborn the muscles are around those blood vessels.

Once those muscles around the blood vessels relax,  the sores begin a slow healing process.  Now here is the freaky part.  After they heal, a scab of dry skin is left behind. The hard dry skin will snag, sometimes dislodging the hard dry skin and fall off and it won’t be painful.  Most of the time, you won’t feel it unless it is still in the process of healing.  Yes, I just told you a small dry chunk of skin will fall out of a once uber painful sore and you may, or may not feel it.  The cells beneath the dry hunk of skin have blood flow and are growing in to fill the hole, pushing out the hunk of dry skin.  When this hunk falls out, it will  leave a gaping hole.   You will be able to look inside a small hole I can only describe as looking like a nail taken from a wall.   I have experienced sores that have left a hole in many a knuckle and fingertip big enough to put the tip of a screw in without touching the walls.  Don’t worry, eventually, these holes close as the cells regrow tissue. (See picture)

Each of my knuckles has had 18 years of sores that have been open and healed. The number of sores I have had on this hand alone is in the hundreds.  As you can see, the holes are gone and there is healthy tissue in its place.  You will also notice there are healing wounds on my index finger knuckle (bottom of picture) and another on my pinky finger knuckle.  These sores are impact wounds.  Because of the claw-like deformity of my fingers, sometimes I get in my own way and bump into things.  A long time ago, these wounds would have taken months to heal.   The dry scabs still happen, but because of medication that keeps my Raynaud’s under control, my wounds heal much faster and the chunks of dry skin falling off happen less frequently.  Because of the stability of my condition and my experience with wound care, these impact wounds take much less time to heal.

Now, you may be asking, “Karen, what is it you want me to take away from this surprise? This sounds insane.”

This may not be much of a surprise, but it won’t be the first time I’ve been thought of as insane or unstable.  Please rest assured, I have been tested by more than a few psychiatrists and I’m coming up on my “Crystal” or 15 year anniversary in therapy.  I have the documentation to prove I am quite stable.  When it comes to Scleroderma, stick with me, you are in good hands.

I want you to take away two detailed important points about living with Raynaud’s:

1. Take care of yourself and take your medications as directed.
Reading about my experience with Raynaud’s and what it has done to my hands may be overwhelming to anyone who has it, but it is worth it.  Here are some tips:

A.  Keep your core warm.  I have a three layer rule:  Undershirt, overshirt and shell (something removeable like a cardigan or hoodie.)   In extremely warm weather I still wear two shirts. (A bra does not count as a layer.) It helps when transitioning between extreme hot and cold. Outdoor to indoor air conditioning can trigger a Raynaud’s attack.  This is where the shell comes in handy if the two layers do not help.

B.  Stay away from caffeine.  Caffeine is not your friend.  Coffee is a harsh mistress.  I am in no position to judge.  Decaf or moderation helps.

C.  Exercise.  As much as you can, move.  It gets your blood moving and opens blood vessels to get blood to those cells.  Don’t beat yourself up if you are not very mobile.  Talk to a physical or occupational therapist about exercise that will help with mobility of your fingers.  The exercises they assign have an additional benefit of an increase of moving blood to those fingertips.  If you are very mobile and you are not exercising, start.  Find something you like to do and stick with it.  You are more likely to stick with it if you enjoy it.  The Wii Fit is a great place to start. It got me going and Jules herself is using it to get started.

2.  Scleroderma is full of surprises.  Don’t panic.
Parts will come and go.  Most of the time, they grow back.  Take care of yourself.  You are not your disease.  Find humor when you can.  It will help distract your mind from your pain.  It sounds impossible, but it is not.  You will find strength you never imagined possible- and yes, it’s YOUR strength.