Scleroderma Is A Terrible Name

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?”

 

Scleroderma

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

 

Scleroderma Does Ugly Things to Beautiful People

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?

 

Protecting The Kingdom At All Costs

 

We all have fears.  Most people have a fear of things that will eat them.  Some may be afraid of heights.  I have a fear that walks a fine line between a little weird, and crazy.

 One of my biggest fears is having to disrobe for a medical exam between waxing,  mistaken for Sasquatch and forced into a life of captivity as a subject of scientific research.  But my greatest fear, is being without underwear.

For as long as I can remember, I have never worn anything without my underwear, even pajamas.  First, it was  my diaper under my feet-ey pajamas.  Next, K-Mart underwear, because we couldn’t afford Underoos. and finally, underwear and an over-sized T-shirt.   Look, I may not always wear pajamas, but when I do,  I always wear my underwear beneath them.  

This may sound like the beginning of a story where I talk about how I was traumatized, or have a repressed memory  manifesting itself as a compulsion  to protect my private parts, but no, this is not the case.  And before you go all Freudian on me, I can say with great certainty after 16 years of therapy, if I had been violated in some way, it would have come out, and luckily this is not the case.  Nope. I just have an unrealistic fear of going commando.

Is that really such a bad thing?  I think not.

When I was growing up, I saw actors on soap operas wearing sheets like a beach towel, and I wondered, “Why are they talking about how much they love swimming.  I love swimming too, but this is ridiculous. Maybe if you’d shut up about it, someone will bring a peanut butter and jelly sandwich to that fancy tree house of yours, just like like Mrs. Lancaster did. ”  (Hey, didn’t everyone have a friend with a pool?)

Eventually, I learned that people in soap operas were not having a post-poolside conversation in a fancy tree house, but had just finished playing another type of Marco Polo.  Now, years later before, during, and after I play ‘Marco Polo’ ,   I leave my underwear on until the very last second, and once they’re off, I know exactly where they are.  Or at least which direction to look.   Maybe that’s TMI, but we all saw Kim Kardashian’s naked, oil-basted, photo-shopped ass last week, so if anything, I’m being modest.  (You’re welcome!)  After sex, I may stick around to bask in the after glow, but only after I have put on my undies.  If  I can’t find my underwear, and I’m not at home where I can pull a new pair out of the dresser drawer, I will search the place with the passion of a cleaning meth addict. (Without all that itching) I will turn on lights, lift sheets and flip mattresses if that’s what it takes to find them.   Maybe to \ you, underwear just may be just a poly-cotton  blended piece of clothing, but to me, my britches are The Knight of my Lady Parts, and defend The Kingdom with honor.  (Yes, I did just refer to my vagina as, The Kingdom.)

In 1998,  I left for work one  day and  woke up to find my mom was there from Arizona, my dad was there from Northern California, my grandparents were there from Westminster and my ex-husband looked a few years older, and he lived with me so I had no idea why he looked  so tired.  I might have felt like Dorothy at the end of The Wizard of Oz if it weren’t for the stabbing headache from a skull fracture with  subdural hematoma and a few broken ribs.  I had been in a coma for three days, (I was time traveling.  Suck on that, Doctor Who!) and if my husband had not been home to perform CPR on me in a pool of my own blood, I’d most likely be dead.  I had heard of comas, but I thought they only happened to people in soap operas.  Once I realized I was in a hospital gown, I immediately took inventory on my underwear and found a catheter, and it freaked me out a little bit, but I had such a headache, I was unable to do anything about it, and for a few days, The Kingdom remained unguarded

It took me months to recover.  My mother-in-law came out from Wyoming.  She and  my mom were both there to help as long as they could, but eventually it was up to my ex-husband to change the dressing on my head.  It was very hard for me to reach my wound, because I had been in bed for so long recovering, my body atrophied a bit,  and there were broken ribs, and the scleroderma, didn’t help either.

Then came the day when my underwear saved The Kingdom from invaders.  After a head injury most patients need sleep, and I was no exception.  My head wound had almost completely healed closed.  It had about an eighth of an  inch left to be closed completely.  I had most of my mental faculties back, but I still tired easily and needed naps.  One afternoon, I was awakened by movement on my arms.   It felt like tiny little hairs barely touching my skin.    I got out of bed and headed to the bathroom mirror, took off my shirt and saw ants scrambling from their marching  formation across my body,  up my neck and into my hair.  I looked in my underwear, and there were no ants.  The Kingdom had been defended from foreign invaders.  I wondered why ants were headed for my hair, then I pulled the bandage aside, and in the white puss were ants,.  Zombie ants harvesting bits of my brain to bring back to their colony of ravenous, zombie-baby ants baring tiny, zombie-ant teeth anxiously awaiting my delicious brain tissue.  I had always thought that if I were to be eaten by a creature, I thought I would be delicious, but knowing I’m delicious did not calm me down.   There was no time to even scream,  because I jumped into the shower, got rid of all the ants I could from my body, got dressed, and got into my car , which in retrospect was not the wisest choice, and drove forty-five minutes from Oceanside to La Jolla, to my local Veteran’s hospital ER to get those ants  out of my head.

I wouldn’t recommend it, but I can say with great certainty  that if you walk in to any ER and start screaming, “Get these ants out of my head!”, you will get immediate attention.  In most cases,  that would result in  restraints and a psychiatric evaluation.  Lucky for me, the bandage on my head added credibility to my story.    I was examined, and I  found out my wound had become infected.  We had just cleaned and changed bandage that morning, and the doctor told me the ooze was only a few hours old, and the ants were harvesting the pus, not feasting on my brain.  I do worry that one day, zombie ants will come back for the rest of me.

My husband came straight from work at Camp Pendelton,  and brought with him a shipmate  to take my car home.    To say  he was upset with me because I drove myself to La Jolla, was an understatement, but by the time he got there he was either over it or had swallowed his feelings to get through one more medical complication during our first year of marriage. I remember that he was a cool cucumber when he got there.  After that, I don’t remember much.  My wound was scrubbed and debreeded of tissue and bandaged.  They tried to give me a bandage cap to wear over my head, and of course my dumb-ass refused, because we had a wedding to go to the following week and I didn’t want to look like a head-injury survivor, you know because I’m that kind of stupid.   So, they bandaged it with more tape and gauze, and sent us on our way.  I don’t remember much else, because after having my head scrubbed with what I believed to be steel wool, I got a nice shot of morphine for the ride home.

Sixteen years later, I continue to enjoy my full recovery.    But if I was already ‘enthusiastic’ about always wearing underwear, I became even more so because you know, ants.  (in case you forgot)  And so, the saga continues…  

Having scleroderma, means that invasive tests are routine to monitor  progression.   The following year, I was due for an upper endoscopy.  In the  pre-operating room, I was handed a gown and told to remove all of my clothing, even underwear.  I remember thinking, “Yeah, I’m just going to ignore the part about my underwear.”

They were working on my mouth.  Why would they possibly need me to be completely naked?  Maybe they take this who sterile environment thing too seriously.  I’ve had them before, but I couldn’t remember if I had left my underwear on during prior procedures, and my compulsion guided me to the right path: Keeping my  chonies where they need to be, protecting my private parts from ants.  And I got away with it.

Fast forward to Superbowl Sunday, February 1, 2004. A young and upcoming artist named Beyonce, sung our National Anthem.  Kid Rock was wearing a lovely American Flag poncho, desecrating the American Flag. And Janet Jackson had just scarred the corneas of children around the world because they saw her star-shaped nipple for 1/16 of a second, but I had bigger concerns.  I was eight month pregnant, and someone had the nerve to interrupt me while eating a chicken pot-pie.   I was in the hospital, with blood pressure so high, I was blind in one eye.  My had  doctor come in to my room and with exciting news:  We could not wait until the following morning, that baby had to come out now.  Blood work had determined the rate of my organ failure due to my very high blood pressure had become critical.

So I looked at him with my one good eye and said, “Okay, let’s do this.  But I did just eat a chicken pot pie, is there any way we can make it so it doesn’t come back up?”

Even on an empty stomach, I hurl coming out of anesthesia.

He replied, “Don’t worry, we have drugs for that.”

And that was the day I learned to ask for nausea medication before every procedure, and I never threw up after surgery again.  THE END.

My husband and mother had just left an hour before this lovely news, back home to Murrieta. The plan was for my  husband was going to come back to stay with me in the hospital overnight, and my mom would be back in time for the birthing in the morning.  We lived forty-five miles from the the hospital in San Diego.  So while my mom and husband sped back to the hospital, I was prepped for surgery.  I was given a gown and told to remove all my clothing and of course, I left my underwear on.  If there was ever a time I needed The Kingdom protected, this was it.  They were cutting the baby out of my abdomen anyway. ( In retrospect, wearing underwear while giving birth does sound a little odd, but at the time, it sounded pretty sane to me,)  I was transferred to a wheelchair and spent some time outside the OR watching nurses and doctors work quickly, but calmly.  Premature delivery was common at Mary Birch Hospital, and at thirty-two weeks, I was considered full term.   I was placed on a gurney and wheeled into the OR.

This was my first time in an operating room while being wide awake.  The bright lights of the operating room seemed to emit cold air against its deceptively bright white, foreboding walls .  I caught a glimpse of the table, just before it was covered.  The steel  made me think of a deep sink in the galley of my first ship.  The smooth surface  looked more like it was made for a giant cooking pot, not a human.  Just like the counter next to the deep sink, the sides of the operating table beveled a little.  On the ship it helped keep water from falling to the floor.  How clever.

I was placed on the operating table.  My vitals signs were taken, my IV was hung and I was ready for my epidural.  I sat up, the back of my gown was opened and I heard the doctor behind me ask, “Why are you wearing underwear?”

“Because it’s comfortable? ‘

A nurse walked up to me, held out her hand as if she were collecting my chewing gum like my fourth-grade teacher, and said, “You’re not getting that epidural if you don’t hand me that underwear.”

And like a kid spitting out her gum, I removed my underwear.  I got back into position and felt the cold of the antiseptic at the base of my spine, a small pinch and then nothing else.  My first epidural was a piece of cake, but I was forced to go commando.  I felt weird and exposed although I was covered in sheets.  A partition  was set up, it didn’t cover my face, but I felt like I was in a tent.  I closed my eyes and tried to pretend I was in a blanket fort at my grandmothers, which  helped until I felt those blue sheets they use in surgery, over my belly.  Then  I heard one of the nurses say, “Doctor, he’s here.”

My husband and mom were greeted at the hospital’s main entrance by a nurse who quickly let my husband to where he was to scrub in.  Now I understood why the operating room in this hospital was on the first floor, near the NICU.

As soon as my husband was in the room next to me, I could sense the scalpel slicing my belly.  At first, I marveled over just the possibility that a human being could open up another human being’s  abdomen, and pull out another human being.  Then I began to feel my insides being stretched and rearranged.  It wasn’t painful, but my head moved with every not-so-gentle push and pull.  My partition was blue, and I wondered if looked like a swimmer, treading water being  attacked by a great white shark beneath the still blue water.    

Just when I thought it would never end, a giant lizard with the most beautiful face I had ever seen, was held up by the delivery doctor.  The lizard looked at me and said, “I got this mom.  You get some rest.  I’ll take from here.”  as he appeared to point his index finger and wink at me.  

My husband left to be with him while I was busy having my body put back together, and fondly remembering the hallucination I just had.   I could feel my organs going back in and wondered if this was what a car feels like when its cam shaft is replaced.  The doctors rushed to put my insides back together, before my blood pressure went any higher.   I felt like I was inside out.  Even after being closed up,  I could still feel the cold air of the sterile ER inside my body. I was transferred to a gurney and was wheeled to the recovery room.   On our way, I got to see my little guy in his incubator as we crossed paths, and paused for a quick hello. 

Once I was stable enough, they let my mom and my aunt into the recovery room.  They stayed with me, as I lay there shivering from the inside out.  Mercifully, the shivering stopped and as soon as I had the strength, I lifted the sheet and examined my dressing.  My abdomen looked like it had been stuffed into a gauze corset, and I was wearing underwear.  Operating room underwear, but it was still underwear.  I sighed contently,.  My son was healthy and The  Kingdom  was once again, safe and protected. 

 

 

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The Best Description of Living with A Chronic Illness You Will Ever Read. Ever.

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

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

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

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

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

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

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

 

Vanity and Denial Are My Great Motivators

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

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

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

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

 

 

Laughter May Be Best Medicine for Scleroderma

Okay, maybe not the best, but it helps.

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

 

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

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

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

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

Scleroderma Awareness Month

 

Year-round, researchers are gaining ground in the fight against scleroderma.  Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the  world to teach doctors, and medical students.  Patients are gathering in support groups to learn about scleroderma, and share ways they cope.  There is much being done, and all of this needs funding.  All of the activities I just listed, are supported by donations, grants and volunteers.  Every June, we unite to support the research, education and patient assistance.  We share memes, we wear teal, write letters to the editor and/or  we gather in parks and walk to raise funds for research of scleroderma.

So if you stop reading this post here, you have read the most important part of it.  Thank you 🙂

I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine.  I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.

Back to being sick and tired of writing about being sick and tired…  So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases.  Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured.  In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients.  I look forward stories of hope, memorium, and humor where we can find it.

You might be thinking two questions:  ”

1.  Karen, how can I possibly laugh at a time like this?

2.  Are you high?

The answer to your first question is that at the most serious of times, I have found a way to find humor.  Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next.  It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present.  On the science side, laughter also releases endorphins, and helps our brain cope with situations.  Laugh at what scares you.  It will only make you stronger.  (Go ahead, research how laughter is the best medicine.  Millions of Reader’s Digest readers can’t be wrong.)

My answer to your second question:  No, I’m not high. (As far as you know.)

I do mean it when I say I am sick of scleroderma awareness.  There are great organization making breakthroughs in treatment, and clues to a cure.  If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure.  Our lives depend on it.  Thank you.

 

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!

 

I Am A Guinea Pig & I’m Okay With That

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 the90’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 Tums.”  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” 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.  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.

picture of a butt

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.