So I’m on Periscope.  I couldn’t figure out what to broadcast.  I don’t want to tell you guys everything.  Then, while I was scrolling through scleroderma  posts.I had an idea  So many patients are in pain, many are waiting for lung transplans all are waiting for the ever elusive cure.  It truly is a cruel disease.

Patients with diseases like scleroderma, sarcoidosis, lupus and more, don’t look sick until thry are in a hospital gasping for air, or taking medication to reduce the swelling in our feet when our hearts are working harder and getting damaged from too many symptoms associated with these autoimmune diseases.  Then, there’s the lack of awareness:  The sclero-what?, the mistaken for the skin condition and my all time favorite and yours; it’s all in your head.

Don’t get me started on October and “Pinking It Up.”  The pink all  over the TV and social media is enough to make a scleroderma patient angry.  It’s not because breast cancer awareness shouldn’t be done, or those walks that encourage those fighting cancer and those who lost their loves to cancer: Scleroderma patients have far few treatment choices and as someone who has experienced this for twenty years, get tired of seeing friends and family whooping it up about breast cancer, but are MIA for our scleroderma walks.  Look, scleroderma is not the only rare disease, and there are thousands of patients sitting at home in pain or whatever, feeling pretty left out,.

I’ve said it before and I will say it again:  Scleroderma is not sexy.  And information about breast cancer to those who haven’t known someone personally, well lot’s of people think breast cancer is nothing but chemo, and a new set of tits.  It’s not, But thanks to marketing strategies by non-profit research organizations who can afford great marketing, get the coverage to get the money to advocate for patients and research.   Is that wrong?  No, it just is.  Not right, not wrong, just: Is.

Well, I wish I had a soloution.  I wish I could tell you that if we work together, we can get some coverage, but I’ve done that unsuccesfully already.  I’m tired of talking about how bad scleroderma is.  I’m reading this and realize how big an a**home I may sound like, but we get enough smoke blown up our a**.  I’m no cheerleader when it somes to awareness.  I no longer wear teal, and I don’t attend support groups.  I go to doctor appointments, spend time in hospitals and the last thing I want to do is drive an hour or so, so I can talk about scleroderma. I choose to write about it and share.  Maybe that’s not enough for some, but it’s all I choose do.  I’ve spent far too much time in therapy fatiguing out what works for me to change.

Long story short: I’m going to share some stuff on Periscope.  I can broadcast from anywhere and it’s only up 24 hours, so I don’t have to worry about embarrassing footage archived on the internet.  (Well, I guess someone could record these video and save them, but really?)  Remember when I video blogged?  I took all of those down, because they were out dated.  Now, I can say something and people can tune in live, free and then it’s gone in 24 hours.

Look, not everything I have to say is important, but my whole point of this painfully long post is, I want to show patients what’s possible.  I’m not saying every patient can do what I do.  But every patient is strong enough to try what will work for them.  We are advised to rest by well-meaning friends and family, but if a doctor tells a scleroderma patient they can move, the scleroderma patient should move.  It’s painful, it’s scary and it’;s not for everyone.  So if you decide to move, ask your doctor for a referral to physical therapy.  They teach exercises that help with pain and mobility.  They can’t stop scleroderma from progressing, but maybe they can help keep what does work, working or able to recover.  And ask to learn how to fall.  I can’t tell you how often I use those falling prevention and techniques when falling.  Oh, and follow me on Periscope at @karenOvasquez, even if you can’t move, or aren’t ready, check it out because I love the attention.  The thing I missed most when my scleroderma was at it’s worst, was knowing that others survived.  As patients with a rare, unknown disease,  it’s up to us to blaze a trail of surviving and thriving, for future patients.  Until we have a cure, there will always be more patients.  Maybe I can give them some hope.  I’m going to contribute by posting some exercise stuff on Periscope. We don’t have a multi-billion dollar campaign, but we have each other.


Getting The Full Picture

By Karen | Filed in Sarcoidosis, Scleroderma


Ever notice things in a photograph, you didn’t see while you were posing for the picture?  Here is what I have learned about my own behavior and mental health with a “photograph perspective”.

Finding the right antidepressant is no easy task.  So when we find one that does the best job with no side effects, or manageable side effects, it’s like someone threw a dead tree in your path, and the only way is to climb over it.  Of course, after taking a medication for years, I don’t always keep up with updates.  Every medication is not for everyone.  It’s a fact and quite honestly, it seems like common sense, but most of us never read labels.  Think about it.  Labels are updated as more information becomes available through research.  I don’t know if you are like me, but when I pick up a prescription I have been taking for years, I get a ten page document citing possible side effects and risks, and I hand it back to the pharmacy technician, and tell them to shred it.  I could wallpaper an entire housing development with all the medication information I have received.


Side effects happen with all medications.

A few days ago, I was reading a blog post about a woman who quit Cymbalta cold turkey.   Sure I was a little shocked by someone talking about quitting a medication cold turkey with a possible side effect of suicide for some.  But this post by Crystal Lindell about Cymbalta, taught me an important lesson about how I form some opinions. I put down my iPad and started writing about how wrong she was, until I realized I was on a rant.  So I went back to her post, and followed links to her referenced prior blogs for more of her experience.

In an earlier post, she talks about how Cymbalta saved her life.  You should read it, 

Ms. Lindell’s post struck me on a personal level because my depression triggered by the pain and progression of my chronic illnesses changed the chemistry of my brain, and I nearly died.  Our experiences had similarities, but they were not the same.  I found myself comparing my issues to hers and thinking, “she’s wrong”, when it was I who was wrong.  Sometimes, I think I am using empathy, but it’s really not.  Instead of imagining what it would be like for them, I imagine what their experience would be like for me.  Yep, that sounds about right.  I make it all about me.  It kind of reminds me of “Do unto others, as you would have done to you.”  But most of the time, what might be right for me, would not be right for others.

I’m not sure if it’s because I am selfish.  For years, I have had to advocate for myself as a woman in a health care system designed for men (Veterans Healthcare) with two rare progressive, degenerative and potentially fatal conditions.  I realized I might be too self focused the day I brought my newborn son to his first pediatrician visit.  His doctor asked for my son’s medical history and out of sheer habit, I rattled off my own medical history.  It wasn’t that I put myself before my kid, it was just that answering that question had become so routine for me, I had an automated response.

I talk about it in a prior blog post.  and since seeking treatment for depression in 2000, I have changed medications many times. There were medications that put me to sleep, some that killed my libido and I have skipped doses of Cymbalta waiting for my prescription to arrive by mail and I can say that having sex during that time is pretty good, sex.  But taking myself off medication that did not reduce my libido, but my libido increased without them, was not worth risking my mental health.  Luckily, thanks to age and wisdom I know that  if I have amazing sex once, it can happen again.  So  I need to train my brain, so to speak.  Our mental state affects our sex.  The actual sex organ is our brains.  I know it doesn’t seem like that, but the response to it, is made by neural transmitters, nerves and hormones.  Look, if a medication completely shuts off your libido, like Paxil did to me,  it was the right decision for me, to change meds.  For me, Cymbalta had some side effects, but they were solvable with the addition of Welbutrin and training my brain.  The cool thing about that, is you can always find a willing participant (in the name of science, of course) to experiment with sex by trial and error.   And  as the brilliant Amy Schumer  put so eloquently, “…I can catch a dick whenever I want.”

For me, going off Cymbalta was not an option.  I did it for two months.  I handled the brain zaps and withdrawls with a little help from sedatives and pain meds prescribed by my doctor.  I was closely supervised by my psychiatrist and General Practitioner.  After two months,  the symptoms of my depression came back.  Lucky for me, I have a support system in place to check my depression.

When there is a change in my medication, or a potential trigger, I reach out to three people I would trust with my life, and ask them to watch for symptoms.  They don’t watch over me 24/7.  But they check in with me and ask me about triggers.

Triggers and Symptoms
I am diagnosed with Major Depression and Anxiety Disorder.  I’ve had years of therapy to determine my triggers, like specific people or events.  The people or events can be present, noticed and experienced without going into depression, but symptoms can be triggered by these events and or individuals.  Individuals do not trigger things on purpose, but we all have friends or family who bring us stress with their behaviors or conversations.  I had to learn to recognize the symptoms of the beginning of my triggered depression.  One of them I did not identify until 2004.  It was just after my son was born.  I was driving home with my sister in-law and my nephews and I had to drive on an overpass.  If you’re a southern California resident, it’s the one that takes you from the 91 east to the 15.  I was about to drive onto the ramp and I felt a nearly crippling fear of going on to the over pass, but because I had people in the car and it was in the middle of the night, I slowed down and drove extra careful.  I calmed down as soon as I was on the 15.  I had recognized this feeling before, but my fear was so intense, I knew I needed help.  I spoke to my therapist, and sure enough, an extreme fear of going over bridges is actually a thing. The depression had affected my “fight or flight” response by making it sensitive to activities.

Unlike Ms. Lindell, Cymbalta does not kill my creativity or sex drive.  I guess I’m just lucky.  Not every medication is for every one and not every pharmaceutical company labels their medication as accurate as they should be,  I have been on perhaps a dozen antidepressants in the past fifteen years.  There were some that gave me no sex drive, there are some that put me to sleep.  Right now, I’m on Cymbalta & Wellbutrin, with no sedatives.  I have some, but I don’t take them.  I guess it’s comforting to know they are there.  And I have to agree with Ms. Lindell that exercise is the best medicine for my pain.  But to battle my depression without meds, I need to do at least ninety minutes of cardio twice a day to keep me from falling into the abyss.  So exercise once a day and meds is a good mix for me.  Cymbalta may not work for millions of other people, but right now, it works for me. And when Cymbalta stops working, I will tell my support system what’s up.   I don’t need to be watched like I’m under  house arrest.   But by letting my friends know,  they are more likely to answer my phone calls when they are busy, or return my call immediately if they miss it.  There’s nothing wrong with having a plan.

About the good sex:  Well, I went from having no interest in sex because of my meds, to finding the right med that would allow me to feel like I might be interested.  It took changing  medication, yoga and exercise that helped and now my sex life is pretty damn good.  Like anything, it’s trial and error, having a good team of doctors ad having a willing participant to help with training your brain.

As for quitting any antidepressant cold turkey, I would not encourage anyone to do that without a doctor’s supervision and a group that will help observe your progress.  You don’t need to make a big deal of it.  Take three people and use them.  I never use only once person,because one observation, could be the wrong observation and two others can help counter the error.  One way to think of it is, when you are getting your picture taken, you really don’t know what’s going to show up in the photograph, until you can look at the picture itself.  Those three friends of mine help me identify what I can’t see while I am present in the “picture taking”.  It never hurts to have an extra set or two of helpful eyes.


Scleroderma is an autoimmune disease.  Healthy cells are mistaken for unhealthy ones, and the body attacks itself.  Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin.  Because of the name, people mistake scleroderma for a skin condition.

When a doctor told a patient that he or she had scleroderma, it was usually followed by a statement like: Get you’re things in order, you don’t have long.  For a long time, that was true.  Now, thanks to research, there are treatments available to help patients survive the progression of scleroderma by treating a patient’s symptoms.  Scleroderma is different with every patient.  Some have Diffuse Scleroderma or the “fast and furious killer”, or Limited Scleroderma, which progresses slowly and in spurts.  Many patients die of complications of this type.  Then, there is the overlap kind.  In addition to scleroderma, a patient  can have  another autoimmune disease like Lupus, Fibromyalgia and any of the dozens of other autoimmune diseases that manifest slowly.  Often not receiving the proper diagnosis because symptoms have not yet appeared, or the patient’s medical team does not know enough about autoimmune diseases to diagnose properly.  Often resulting in the Limbo of illness: Mixed Connective Tissue Disease, or MCTD.

I was diagnosed in 1994, at the Madison Veteran’s Hospital.  The Veteran’s Healthcare System was originally  designed for aging men.  So not only did my medical team have limited research about scleroderma at the time, I was a woman and they really had to work hard to make changes to accommodate my treatment.  They did not know I should have immediately been placed in an occupational therapy program to prevent my hands from becoming severely damaged and impaired.   They did not know to inform me about symptoms and warning to watch for, so I didn’t have to loose part of my thumb.  They didn’t know that my additional symptoms were really sarcoidosis, and not scleroderma symptoms, proven by an outside provider after taking months of ER chest CT scans to UCLA’s pulmonology department, three hours away paid for out of my own pocket and private insurance I could only receive at the time because my husband and I owned a small business, and as an employee could not be turned down because of pre-existing conditions.  Yes, many people I met in the 1990′s are surprised to still see me alive.

Now that denying insurance coverage because of pre-existing conditions is now against the law, patients with scleroderma are receiving life-saving and life-extending treatment, but many patients in areas that are not near a major city like Los Angeles, Chicago and Minneapolis, patients are still getting misdiagnosed and dying because of it.  How do we solve this problem?  With medical provider education and patient education.  Of course, money is the biggest help because that funds research and treatment.  All of these things are happening, but we can do so much more.  Scleroderma needs better marketing.

T-shirts and teal bracelets are not enough.  A pretty color, a shirt  and accessories is not enough.  Scleroderma needs a new name and  I have the perfect name.  One that embodies the surprise of the uncommon scleroderma symptoms. A name that expresses the pure frustration of scleroderma patients, in addition to the terror they feel when they experience trouble doing something we all do without thinking; like swallowing and breathing.  I think you will agree this name, fits.

Scleroderma needs to be renamed, “Whisky-Tango-Foxtrot”.

It’s easier to say, easier to remember and let’s face it, you can’t forget it.  It’s obvious why, but I’ll explain it in one simple sentence. It’s easier to Tango or Foxtrot after some whiskey.  (By the way, did you know there are two ways to spell whisky?)   Not everyone likes whiskey, but who doesn’t like dancing, or watching someone dance?  See how easy that is?  Whiskey Tango Foxtrot.  Rolls right off the tongue.  So let’s not just raise awareness, let’s educate and get the word out about this debilitating, progressive  and degenerative disease called scleroderma and rename it Whiskey Tango Foxtrot.  Because I know when I first heard the word scleroderma the first thing I said was, “sclero-what?”.  End sclero-what today, because the best way I know how to express what scleroderma has made me think of the most is, “WTF?”



What did you think of when you first heard scleroderma? This sums it up for me


Scleroderma is a chronic illness it oesn't make me a hero.




As a scleroderma patient, there are things I cannot control, but as a strong-willed control freak, I happily manage to control a thing or three.  

Recently, Facebook banned a photo of a woman with scleroderma, next to another scleroderma patient who did not look like she had scleroderma.  She did it to show just how different scleroderma affects each and every patient.  Since Facebook banned the pictures, she has encouraged scleroderma patients to share pictures without make-up.  I love this.  It’s a bold step into the limelight for many patients who wear make-up and long sleeves to avoid the stares from strangers.  After twenty years of hiding changes to my body, I am not ready to step into the patient limelight.  Why?  Am I chicken-sh*t?  Not necessarily.  Hear me out…

I admire patients who step out into public with their teal shirts answer questions and enduring the stares.  It’s not that I don’t want to talk about it and educate others about scleroderma and what they can do, because I’ve been doing it for twenty years.  I just want to do it in controlled settings.  For example, I won’t leave my apartment without wearing make-up, and something with sleeves that will minimize the appearance of my hands.  No, it is not because I’m ashamed.  It is because I don’t want to be stared at, or begin talking to strangers about my very personal medical care.  In the 1990′s I would tell people about scleroderma to anyone who would listen.  I would show them my hands, explain my care if they asked about it.  I guess in a way, I am burned out on the person to person explanation of what I have, what I do and how I cope.  Now, I have a blog with years of my personal experiences.  Anyone can access it.  Of course I want to meet new people, but not to talk about a medical condition that has caused me to spend years of my life dealing with my medical treatment.

Let me put it another way; taking care of my health is my job.  It’s my forty-plus hour a week job.  For those of you that work forty hours a week, would you like to discuss what you do every time you go to the grocery store?  Look, I know scleroderma patients need awareness.  I just choose to do it my way with the written words of my blog, and getting out and doing things not related to scleroderma.

At first, I thought I was a coward.  Why hide?  Why won’t I step into the limelight and show the damage sceroderma has done to my hands and face?  Some of you who follow my blog are familiar with my “vanity”.  I place vanity in quotations, because what some perceive my actions as vain, is not.  Do you want to know why I refuse to be photographed without make-up and un-tag myself  or ask to have my picture taken down for reasons only I understand?  Because I do not want to be remembered for having scleroderma.  I know, it doesn’t sound nice, but it’s my truth.  I’m not making excuses, I’m sharing because I can’t be the only scleroderma patient who feels this way.  When I die in fifty years of old-age, I do not want to be memorialized on a website that talks about my fight against scleroderma.  I want to be remembered for my sense of humor and my amazing son who will grow up to do things to make the world a better place..  When I die, I do not want anyone to say, “we lost another sclero-warrior”;  Or that I’m now a “sclero-angel”.  I just don’t.

Is this a severe case of denial?  Am I  oblivious to the possibility that the progressive, degenerative course of sarcoidosis I have in addition to the scleroderma?  I’m not oblivious to it.  I just don’t care to think about it.  Not because I have a choice not to think about it.  With every doctor’s visit I think about the fibrosis and granulomas, plotting to kill or disable me.  When I don’t need to be focused on it, I just don’t.

And there’s the argument that, “Karen, the pain of scleroderma doesn’t allow many patients not to think about it.”
Yes, that’s true.  I have experienced days and weeks at a time where I was in constant pain as my body hardened.  I used to ask for it to stop, until there came a point in my progression that in order for scleroderma to stop,  I would need to die.  I just accepted that scleroderma would stop when I die.  Then, I tried to figure out how to live while this was happening.

Right now, I have a stable prognosis.  At one time, we thought scleroderma may have run it’s course, but it hasn’t.  It’s going, and right now, it’s not going to kill me.  So right now, I have to live.  And yes, I want to blend and be not all about scleroderma all the time.  I realized I needed to control how I share my experiences when a woman with damage to her hands by rheumatoid arthritis cornered me at The Comedy Store and fondled my hands in disbelief and crying while I politely tried to squirm away from her.  Just because I share my story does not mean I have to stand there while someone looks at me and cries.  I am not there to comfort them and tell them everything is going to be alright.  I cannot be expected to do that, unless I am in a setting that gives permission to that.  That includes comedy clubs, Starbucks grocery stores and anyplace I happen to be.  I cannot tell other people I suffer, because I have the luxury of convincing myself that I do not suffer.  Honestly, I don’t believe I’m suffering.  There are times I do suffer, but the word suffering implies that I am constantly suffering.  I get frustrated often.  Sometimes, I’m in pain, but I cannot say to anyone that “I suffer from scleroderma”.  When I hear that phrase, I hear, “scleroderma runs your life”.  Yeah, in some ways it does, but I refuse to grant scleroderma that power in words and deeds.

Is that denial?  No, it is not.  I used to think I was in deep denial, but it is acceptance.  That’s it.  I control what I can.  If I want to get up in the morning and go get coffee, it takes me 120 seconds to slap on some make-up before I step out the door.  Not because I’m ashamed, but because I don’t want to draw attention to myself.  Of course people shouldn’t stare, but they do.  Not because they are a***oles, but because they are human.  One reason human beings are here today is because of our pattern recognition.  When we see something that falls out of the patterns we are used to, we are naturally curious, and curiosity results in stares and questions.  Kind of in the way a celebrity will wear sunglasses or a hat.  They just want to get a cup of coffee, and relax.  So, if you’re a patient who doesn’t wish to be called a sclero-warrior and be referred to as a sclero-angel after death, that’s okay.  Not because I say so.  It just is.  We don’t have to wear teal, or those damned bracelets of any color.  We can educate people how we wish to, and not have to be thought of as suffering, or as heroic.  Living with a chronic illness does not make us heroes.  Living with a chronic illness just makes us not dead.  How we choose to cope with it is our business.  We don’t have an obligation to walk around like teal billboards, unless we wish to.  And it we don’t wish to, that’s okay.  Because those who do, are no better or stronger than we are.  The just cope and share differently.  Of course its admirable, but I refuse to feel badly because I don’t share 24/7.  I do what I can.  Some do more, some do less, but we all do what we can.


Laugh At What Scares You

By Karen | Filed in Sarcoidosis, Scleroderma

Some of you may already know I started  doing stand-up comedy in 2013.  When I began, I did not want to be the #scleroderma comedian; but because it’s a big part of my story, I have to talk about it the only way I know how, by making fun of it.  And honestly, my adventures in veteran’s hospitals, medical facilities and dating provides a ton of original material.  But I still do not want to be the scleroderma comedian, and that is possible.  Because within these adventures, are stories everyone can relate to in relationships, rejection, disappointment and hope.  So, that’s my story.

This weekend, is the Scleroderma Education Conference in Tennessee.  I’m creating memes based on things I’ve said over the past 20 years.  I normally don’t upload a bunch of pics to Instagram at once, but with the conference, it seems like a good time to post some.  You can find them on Instagram @karenOvasquez.  I will be posting dates of upcoming shows on my comedian page on Facebook.  My humor is PG-13, so except for instgram I keep the blog and comedy seperate.

I have been posting here about once a month.  There are so many great scleroderma blogs out there, check out my blogroll for the ones I follow.

About the tag #LaughAtWhatScaresYou it’s just that:  Something that breaks the tension when things seem scary or a great way to teach others.  It’s something for not just #scleroderma & #sarcoidosis patients to share.  It’s for everyone to share.  Don’t worry, I won’t be starting a foundation or patient group.  There are plenty to choose from and I’m not into commitment.

So please, follow the links and check out the tags.  Share what you feel is worthy.

Thanks! -Karen



World Scleroderma Day 2015

By Karen | Filed in Scleroderma, Uncategorized

Note:  If you haven’t seen the Wayne Brady episode of Chappelle’s Show, you won’t get the reference below.  (Watch Now)


Every year, tens of thousands of patients around the world, get together on social media to inform the masses of scleroderma.  What is scleroderma?  Scleroderma is a progressive, degenerative disease like Lupus, rheumatoid arthritis and … marriage.

We have come a long way in research.  Scleroderma patients are living longer, thanks to the hard work of researches, patient advocates and doctors around the world dedicated to helping scleroderma patients live longer, fulfilling lives.  Unfortunately, that is still a minority of patients.

There was a time that when a doctor said to a patient, ” You have scleroderma”, and it was followed by, “Get your affairs in order.”  Scleroderma was a death sentence.  Things have improved for patients, but I’m not going blow smoke up your a** and tell you it’s all unicorns and rainbows, because it’s not.  Unless by rainbow you mean an arch of shades of brown in the sky to warn you of the sh*t-storm ahead ( an anti-rainbow, if you will); and by unicorn, you mean one of the Four Horseman of The Apocalypse proclaiming,”Taste the rainbow, bitches. ”

Scleroderma is considered an Orphan Disease.  300,000 Americans have the disease.  To me, it’s less an “orphan” and more of a “Son of a Bitch”.   There is no cure.   Patients meet with their doctors, and weigh the options of taking medications with side effects that include lymphoma or sudden death versus, not taking medication.  The cure sounds worse than the disease, doesn’t it?  Well, risking sudden death and cancer to get medicine to stop the progression of scleroderma, is usually the better choice.  Yes, scleroderma is that bad.

It’s hard to explain what scleroderma does, that causes my body’s immune system to attack itself, but this is what I think it would go down:  It would be like being driven around by Wayne Brady.

I’m in the back seat  of a car, and see Wayne Brady driving and a frightened Dave Chappelle in the passenger’s seat.  Wayne Brady stops the car abruptly, orders us out of the car, gives us spiked baseball bats, points to what he wants to destroy, and we do it, because Wayne Brady is one scary m*ther f**ker.  Then we get back in the car and drive until Wayne Brady sees another spot of town he wants destroyed,. Dave Chappelle and I are ordered out of the car by a screaming Wayne Brady.   At one point, he asks Dave Chappelle and I, if he, and I quote, has “ to choke a bitch.”  

So on July 1st, the teal of scleroderma awareness will fade into the next cause’s color, but not for scleroderma patients and those who love them.  . I understand that scleroderma is not the only progressive, deadly disease out there that needs to be cured, but since you’re here right now, take the time to learn about it by following the links, and sharing what you know.

Scleroderma Research Foundation

 Scleroderma Foundation

Bounce to a Cure





If you are “lucky” enough to have the kind of scleroderma that progresses quickly



How I Don’t Look Sick

By Karen | Filed in Scleroderma

Well, at least I think I don’t look sick, or like I have scleroderma.  

I read my dear friend Chris Dean’s  blog this morning and I was so excited to read she was trying out products. I told her so, and she encouraged me to post about my make-up tips.   In the past fifteen years, I have spent thousands of dollars on products I have thrown away.  I finally got wise to return policies.  That helps, but nothing- I mean NOTHING works as well as samples and trying it out yourself.  Well, except someone who is trying products and posting pictures without make-up.  My friend Chris is doing this.  She looks beautiful with and without make-up.  I thought about posting my before and after, and I won’t.  It’s not that I don’t have the self esteem.  I do.  I just hate seeing myself in pictures without make-up.

Before 1996, I never wore foundation.  Just eye shadow, blush, eyeliner, mascara and lip gloss.  Okay, maybe mascara if it were a special occasion.  Now, I set aside at least thirty minutes every day, to cover the damage from scleroderma.  My lips have become smaller, thanks to my scleroderma face-lift. (That’s the scleroderma free gift with purchase.)  And now that I have decided to pursue writing and stand-up comedy, I have found a way to get big lashes, without wearing fake ones.

I don’t think I was “the hot chick”, but I did once cause an accident while in my bikini walking to the bus stop on PCH in Huntington Beach.  before scleroderma, I didn’t mind posing for pictures, I would even photobomb.  Then, scleroderma struck.  My face began to change.  I began to notice this change in 1996, and that is when I began my search for a long lasting foundation.

My pigment began to be darker in some places, and lighter in others.  I’m Italian and Spanish, so I can tan.  Then I began to tan on parts of my face, and hands.  The way it looked  reminded me of an animal print.  Leopard, to be specific.   At the time, I worked in the shoe department in a large department store in La Crosse, Wisconsin.  I had a friend at the Estee Lauder counter.  My sister, worked at Clinique in South Bend.  So, luckily, I had a lot of help.  This was before Estee Lauder’s Double Wear.  Their foundation worked well for my skin, but it did not stay on as long as I needed.  Then, thanks to my sister, I found Clinique’s Work Out Make-Up foundation.  They have a comparable formula now,   At the time, I had no broken blood vessel damage.  It was simply a pigment issue.

My biggest problem with make-up wasn’t which formula I could use.  It was how I applied it.  At the time, I had ulcers on six finger tips.  I could not use my finger tips. to apply foundation evenly.  I didn’t really master brushes with liquid make-up, until recently, so I used make-up sponges.  They were fabulous!  The only problem was, they were disposable, and they sucked up product.  So not only was I spending even more on foundation, I was creating waste.  There has to be at least one landfill of sponges that were mine.  Just another lane on my highway to hell.

Finally, I figured out that concealer as foundation, in some cases, works best for me.  It gives the coverage I need on darker spots, and I can make my face lighter or darker with power foundation and bronze.  But it still had it’s problems. I hadn’t considered photographs.

In 1998, I was married.  Most of the wedding pictures taken with personal cameras turned out great.  Then we picked up wedding album from the photographer.  No one really thought of it as a flaw I guess, but me.  The kind of make-up I used, picked up the light from flashes.  I had that mask look in many of the pictures.  I guess the photographer thought that was how I looked?  No, the truth was, I did not see me, when I looked at my pictures and cried in the car.    I saw someone with scleroderma and I wanted nothing to do with it.  That’s a whole other post, let’s get back to the make-up, because there is a fix for that.

When I don’t wear make-up, I look very sick.  I have telangectasia damage all over my face, and my pigment is very inconsistent. The only time I don’t wear make-up, is if I am going to the emergency room.  Because I look like I have broken out with something, and it moves things along faster.  I have gone to the doctor for check-ups, routine check-ups with nothing wrong feeling great and if I’m not wearing make-up, I get comments about how sick I look.  I could be in yoga pants, bouncing off the walls with happiness after a hike, but if I’m not in make-up, I get comments like, “Oh you poor thing”, etc…

So, thanks to the help I get at Sephora and their amazing staff, (Hello both Temecula locations and JC Penny Glendale!) I have found a few things that have worked for me.  I need to switch foundations when my skin is dryer, but I’m going to tell you what I’m using right now.  Again, you can probably find less expensive alternatives if you can use your fingertips for application.  I took these products right out of the drawer in my bathroom.

Nars Bronzer, Kat Von D Lock-it Featherweight Primer, Make Up Forever HD High Definition Foundation, Kat Von D Lock-it Tattoo Powder Foundation, Sephora Brushes 45, 57 & 55

Karen’s Foundation Routine

  1. Kat Von D Lock-it Featherweight Primer.  After moisturizing, I put this on before applying my eye-make up.  It gives the primer time to set up.  Unlike eye make-up primer, foundation primer needs to sit.  It takes me about 15 minutes to do my eyes on a night I have a show.  So a minute or two to set is fine.  If I don’t use primer with any foundation, it doesn’t last as long. I also notice I use less foundation.  I do apply this with the side of my fingers because it doesn’t need to be layered and buffed like foundation.
  2. Make-up Forever.  I just switched to this one week ago.   I was wearing Kat Von D’s concealer, medium 24.  I just preferred the concealer color to Kat Von D’s Foundation (liquid) that matched my tone.  I switched to Make-up Forever.   The color match was better for me.  Both formulas are easy to work with.  Kat Von D is famous for tattoo cover up.  That stuff works.  Yes, I don’t change primers when I switch foundations.  You don’ t have to buy a whole new bottle. I’m sticking with Kat Von D.  I always keep Smashbox’s green primer if I run out of primer.  Not because I love Smashbox.  It’s because I bought it, I wasn’t crazy about it and I bought it from Ulta and I lost the receipt.  It’s great to use if I run out of primer as my back-up.   What matters most, is what helps you, not me.  I’m probably belaboring this point.  I’m fiercely loyal when I find products and if I like working with the people who sell them.  For  full disclosure, I drive 87 miles, one way to get my hair done.  It’s absolutely worth it to me.  Shop where you feel is best for you, and worth your time.
    Okay, back to my routine:
    I apply my foundation with Sephora’s #45 brush.  It used to be called “Mineral Powder” and something in French.  Someone figured out that it can apply heavy and buff out well for even coverage.  (I figured it out first.) Because the red is so dark, it takes layers of foundation, with this brush, I can do it in one layer.
  3. Kat Von D’s Medium 52 Foundation Powder.    I love this stuff.  If I didn’t need to layer so much, I would just wear this. I do a light dusting over my foundation.  I use Sephora’s #55 brush.  I would love to have one of Kat Von D’s Brushes, but I already had these and buying another brush was not in the budget.
  4. Nars Bronzer.  I just love Nars colors and quality.  I use it as a blush and bronzer.  I also apply this to my neck and up my chin line to even get rid of that pesky chin line.  My bronzer is ver close to my natural all-over skin tone.  Not everyone needs it.  If you don;t use bronzer, be sure to smooth out that chin line with a powder.
  5. Kat Von D’s Lock N Load Makeup Setting Mist.  This stuff is the shiznit.  I set my layers with this, then let it dry.  I keep it in my purse in to prevent my skin from drying out during the day.   My skin is dry, and if I’m at event where there will be photographs, I wear a little heavier concealer.  A little spray once during the day, keeps everything set.
It doesn’t matter where you get your make-up.  What matters is what works for you.  Start with the inexpensive stuff.  Just make sure you check their return policy.  I have returned opened make-up to Target, Walmart & Sephora.  Macy’s and large department stores have good policies as well.  Don’t use it like a library, be reasonable.  They can refuse your return if you abuse it.  But  these stores have a large enough variety of products and inventory, they are able to do that because they know they will keep your business from other departments.  I know Target now has a make up artist in their cosmetics department.  I have worked with two, and they were helpful and recommended great products and tips.  Now that I know what I need, I use Sephora.  I love their staff.  And I get a birthday gift every year.  The points are great too.  I have to replace mascara every two months and if I don’t have a show coming up, the free gifts with my points are a great way to stock up on travel size items and try some of their higher end skin care skin.  And if you can, go in the store with your dad.  We dropped into Sephora so he could pick up some cologne.  He told me to pick anything out I wanted and he’d treat.  I think he saw me as the 13 year-old Karen.  The 43 year-old Karen, picked out the Murad Advanced Radiance Serum.  He was not expecting it to cost $150.00.  Looking back, I probably should have bought two.

I hope that was helpful.  Questions? Post them in the comments.




June is Scleroderma Awareness Month

By Karen | Filed in Scleroderma




  1. knowledge or perception of a situation or fact.
    “we need to raise public awareness of the issue”
    • concern about and well-informed interest in a particular situation or development.
      “a growing environmental awareness” – GOOGLE

There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about.  Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.

Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising.  Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.

People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine.  We all have obstacles to overcome.  They are as different as night and day, but they are obstacles.  Of course people are as strong as I am.  Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.

It has been said to me that, “at least you don’t have cancer.”  Maybe.  Maybe not.  There are treatments for cancer that are already mainstream.  There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses.  For example:  Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression.  The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.

You and I are both aware of scleroderma.  It’s not enough to wear teal and do a fundraiser, but it helps.  Non-profit organizations that conduct research compete with other non-profits.  Not out right, but think about it; they are competing.  People donate money to a campaign they care about.  If it’s not someone they love, those organizations have to advertise to get donations.  It’s not good or bad, it just is.  I am more likely to donate to scleroderma research than cancer.  I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I.  Just like everyone else, I donate to causes that matter to me.  Yet I can still become absolutely furious in October because the world turns pink.  The money used for merchandise could be put towards research and assistant programs.  But without merchandise, people won’t donate.  We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something.  I do it.  You do it.  It’s very American.

Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here.  That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon.  I hate awareness, but without it, I’d be dead.  Awareness inspires action.  Please do something this month to teach others about scleroderma.  Thank you. -K





Time Flies

By Karen | Filed in Scleroderma

I can’t believe it’s been so long since I have posted.  I have been writing posts, but they have been a bit angry.  You see, I prefer not to talk about having scleroderma, or living with it.  I prefer to write about it, but then I get on stage and make fun of it.

I recently told a fellow scleroderma patient on FaceBook, that I don’t think of scleroderma as a terminal disease.  After reading it, I felt like an a**hole, but I guess denying the death part, helps me get through living with it for so long.

For years, I was in pain.  I kept asking for it to be over.  Then I realized scleroderma would be gone when I’m dead.  I rather enjoy being not dead, but who doesn’t?

Then I see patients who are dying wearing oxygen canula, and I think to myself, “I’d rather die than do that.”  Then, I remember the people who love me and I wonder what I would really do.  I talk a good game.  I don’t think I would have the ovaries (or balls) to live with major obstacles that would make me walk slow, or have someone else help me.  Well, I could walk slow, but I couldn’t live with someone who took care of me.  I’d have to have someone help me, but not be my friend.  I once had a caregiver help me, when I got out of the hospital last year.  I had her stop coming because her uniform and face, represented my need to ask for help.

I think that I could not so those things other patients do, to stay alive.  Then I remember that I hate it when people tell me that they aren’t as strong as I am, and they couldn’t hack scleroderma.  When someone tells me that, in my head I hear a voice that says, “Bitch, please.  A trained monkey could do what I do, with the resources I have.”

Now, I’m the person saying to the scleroderma patient, “I couldn’t do what you do.”

We never know how really strong we are, when we are face to face with a challenge.  I will still continue to believe that I’m not terminal, because I’m not.  But I will stop thinking to myself that I would rather die than need and ask for, help.  Okay, you and I both know that’s bulls**t; but I will stop thinking to myself that I would rather die than ask for help with my activities of daily living… for five minutes.  Maybe I will think about it for five minutes once a day, but don’t rush me.  I’ve got other things to do, not related to scleroderma.


Yes.  Scleroderma does do ugly things to beautiful people, and me, too.

Photo by comedian Brendan Cooney, co-host of The Bunny Ranch at Karma Lounge. Yes, I am wearing yoga pants.

When I began this blog, my intention was to raise awareness of scleroderma.  I’m going on my sixth year with this blog, and awareness is not enough.  The truth is, scleroderma is an ugly disease.  It doesn’t directly affect breasts, and the damage done by scleroderma is shocking to those who are completely unaware.   I know, no one wants to hear that people aren’t paying attention because there is no high-level celebrity that has it, except Queen Latifah’s mom.  Here are some things not being covered, even by foundations.  Not because they don’t want to, but because they are too busy researching and assisting patients and their families.

There are so many things that bother me about awareness campaigns.  First, small independent patient communities, not affiliated with research or patient advocacy, raising money for swag to fund their advertising which includes a bunch of prayers and stupid bracelets.  I’ve had scleroderma for twenty-one years and not once has a stupid bracelet made me feel better.  How about skipping the middle man and sending that two bucks you paid to look like you made a donation or care about scleroderma, directly to research or patient advocacy.  Or maybe something like a scleroderma patient’s cleaning service.

Unless you are dying or rich, scleroderma patients do not qualify for cleaning services, without having a home health nurse.  Don’t get me wrong, many patients need full time care.  But for those who don’t, like me, the last thing I want in my house is someone dressed like a nurse, who has to stay for three hours twice a week, cleans my house half-assed because she’s there for healthcare and of course hear about all her personal problems (I’ve had this done with three “helpers”.)  The last time, when I was released from the hospital after forty-five days last year, the VA granted a home health care assistant.   Eventually,I had to schedule myself to be home three hours, twice a week so she could help me clean.  Of course, she was there for healthcare so getting her to clean was like pulling teeth, so that didn’t last long and I resumed my own cleaning. All I needed was someone to come by once a week for an hour and a half and do the heavy cleaning in my house, then get the f*ck out.  I didn’t need companionship, help dressing, eating, bathing, even though I had to stay off my foot.  Just clean the bathroom, kitchen floors, change my sheets, not even do laundry.  But no, the VA doesn’t do that.  Everyone is so busy looking for fraud, that people who could use a little help now and then have to wait until they are injured, or worse.

And then there are people who tell me, “ask your family to help.”  First of all, I live near none of my family.  I live near a health care facility qualified to take care of my medical needs.  Also, that would require me to live near my family.  One family member even told me I should try assisted living.   I get home from comedy clubs at two or three in the morning, and I drive myself.  Look I may have stayed in the hospital forty-five days, but I did not go without a booty call.  I had two during my stay. I got away with it in a hospital, because nursing stations are busy at shift change, but in assisted living,  someone’s going to notice my room mate sitting in a wheelchair outside my room for at least an hour to get the return value on  that Brazillian I pay for every month.

I’ve done my time laying around in pain waiting for medications to be developed to cure scleroderma and sarcoidosis.  The diseases have  run their course.  My lungs are scarred, I have lost mobility in my hands and I still deal with chronic pain.  For me, the worst is over.  I no longer wish to raise awareness of scleroderma.  I want to make patients aware that if they can just keep fighting, and  remember to start fighting again when giving up (I’ve given up plenty of times), that there can be life with scleroderma.  Right now, you might be fighting to breathe.  There is a chance you can make it through this, and if you do, there is so much life to live.  Look, there will always be a time when our bodies will tell us we are ready to move on, that it is time to not give up, but accept that it’s time to leave this life behind, scleroderma or not.  For those patients out there wondering how they can live with the damage, it can be done.  It will take work, there will be disappointment and there will be some success.

The only thing I hate more than having scleroderma, is when someone tells me they are sorry.  I know people don’ really know how to react, and maybe patients appreciate it when hear someone is sorry they have scleroderma, but not me.  It doesn’t anger me, it enrages me.  It’s not that I don’t appreciate them feeling something, but sympathy?  I’m not dead yet, Mother F*cker!  And it usually in a doctor’s office where I am trying to get routine care so I can maintain my health.  I don’t want sympathy from a healthcare provider.  How about some empowerment with care that encourages me to be active?   Luckily, I get that at The West Los Angeles VA Hospital.  I also got it at Loma Linda.  Long Beach sucked.  (That’s my review of those three hospitals.)

So that is my ugly, honest rant.  It’s how I really feel about fundraiser drives to support advertising and teal-wearing and showing pictures people without scleroderma will scroll past on Facebook because it is so shocking.  Hell, I scroll past a picture of a scleroderma patient clearly suffering.  It sucks.  Not as much as having the scleroderma, but it’s definitly hurting the fundraising.  Save the Tatas, raises money because people love to see boobs.  Groups who post the worst and seek sympathy, shock people away from  learning about scleroderma, because to someone who doesn’t have it, it’s hard to see.   I know, it’s not what any of us wants to hear, but does that make it any less true?