Living With Scleroderma & Sarcoidosis Makes Me Not Dead.

 

 

 

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.

World Scleroderma Day 2015

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

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.

 

 

Time Flies

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.

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?

 

Divorce: The Best Thing to Happen to My Son’s Development

I had been married nearly eleven years when I told my husband I wanted to separate a while.  We eventually divorced, with all the ugliness that comes with such an event.  Then, things started going well between us, but it didn’t happen overnight, but we definitely have a better relationship now, than when we were married.

My ex-husband and I were forced to not only stay in contact, but learn to work together for the sake of our son.  It wasn’t easy.  There was hair pulling, biting and temper tantrums; and my son wasn’t so happy about it either.  Then, one day, I did the unthinkable.  I told my ex that I thought it was best my son be with him full time.

It was not an easy decision, but it was the right decision.  My son’s father and I have joint custody, so the first few years, we split my son’s time during the week.  That meant half the week he was with  me, half the week he was with his father.  It was a rotation of four days on, three days off, and the next week was three days on and four days off.  Funny thing about that rotation, that was the watch schedule for my job as a Radioman, in the Navy.  Four days on, three days off, four nights on, three days off. then back to days to do it all again.  My body and mind never really adjusted to that schedule, and I was in my 20’s.  That same type of schedule was not working for my son either.   I had even moved into the same housing track as his father, step-mom and step-sister, but you know, my son needed consistency.  Sure, it was great to be so close.  And for us as his parents, it was nice to be able to be with him half of the time, but my son switching homes every four days reminded me of my childhood:  Not really feeling at home anywhere.

Growing up, we moved a lot.  I went to eleven different schools in twelve years; six elementary schools, two junior highs and three high schools.  I know the name of every school, except for kindergarten.  That was somewhere in Fullerton.  I felt at home at my grandparent’s house, because that was where we lived most.

When my parents first divorced, I saw my dad more.  We would go with him on Sundays  to Fountain Valley Fun Center and ride bumper boats, play video games and drive the track at Malibu Grand Prix.  It was great!   My parents worked things out between them, mostly.  It was far from perfect, but aren’t all parents winging it?  I love my parents, and I would get frustrated with their choices and sometimes I still do, but since my own divorce, I have become less judgmental.

My son’s rotation was not working for me either.  When I didn’t have my son, I stayed home because I was broke.  I spent my money on the three bedroom house I rented and things for and to do with my son.  I realized this was unhealthy, when a friend came to visit and I could not hear out of my right ear.  I hadn’t noticed it, because I was constantly alone when not with my son.  I went to see my doctor about my hearing, and I had so much wax build up, I could not hear out of my right ear.  That’s when I realized I needed to make a change, because I did nothing when I wasn’t with my son.  I watched TV.  I wrote in my blog.  On the surface it seemed like I had a life, but when people asked me what I liked to do, I had no answer.  Then one day I realized that my son and I would both do better, if he were with his dad full time.

It wasn’t because I thought I was a bad mom, but because I felt it was what was best for my son.  In addition to being broke, I had doctor’s appointments and hospitals stays.  The nearest medical facility that could handle my complicated diagnosis, was forty-seven miles away.  My commute could be anywhere between fifty minutes to three hours, one way depending on traffic.  I was constantly late to pick up my son, or to his school events because of traffic.

When I told my son’s dad I thought it would be best form my son that he were with him full time, I had expected a fight, but instead it opened up our communication and cooperation.  Look, it wasn’t perfect at first, but my son not only had a step-sister, he lived with his step-sister.  They had met at age five.  They are nine months apart and had already bonded as brother and sister when they were together, but once he lived with her full time, his behavior improved, and he seemed more relaxed.

Of course, I got the expected criticism from some family members.  One aunt even said to me, “Karen, how can you let another woman raise your son?  How is he going to know who his mother is?”

Of course, my son was sitting right next to me, playing Minecraft on his iPad.  Because family will always question your parenting, right in front of your child.  That’s their way of showing you they love you, right?   I looked at my son and said, “Jake, who’s your mommy?”

“You are.” He replied without skipping a beat.

Then my cousin spoke up, in my defense, and a few other people did as well.  I felt loved that day.  My great aunt asked me an honest question that was hurtful, and my cousins stepped up in my defense.  I was feelin’ the love that day.

Until recently, I felt I had to explain why I was not with my son full-time.  I felt I had to explain that my son was with his dad and step mom not because I had gone off the deep end, or have a meth addiction.  I was so insecure about it, I found myself standing on the sideline of my son’s flag football game, explaining to other parents why I’m not crazy.  Sounds crazy, right?  You betcha!

I would explain my need to be near a medical facility and I needed a hobby so why not stand-up comedy, but that happened only once at flag football.   On my way  back to LA after attending my son’s game, I looked over at the eleven year-old, tucked in under a down jacket I bought in the 1990’s, sound asleep.  He had a great game, a great day and a great week. I no longer felt guilty.  I felt relieved.

You see, even though I was in LA, his step-mom posted pictures on Facebook.  Every time I saw a picture of him, I saw a happy, confident kid.  I thought it was just me.  Of course, this wasn’t just me.  This past Friday,there was a pizza party after my son’s game.  I sat next to my son’s step mom, next to her was my son’s dad, who was also the team’s coach.  Across the table was who I thought was the assistant coach, and his wife.  It turned out, who I thought was the assistant coach, was someone my son’s dad asked to volunteer to help him coach, which is something I always liked about my son’s dad.  If he didn’t know how to do something, he would find someone who did and learn from them.  Who I thought was the assistant coach, was actually a professional trainer of football players grade 1-8.  Does his opinion really matter to me?  Not really, except for that night at the pizza party.

This trainer and my son’s dad were talking about the game the team had just won.  My son is the center.  For those of you who know nothing of football, that’s the player who hikes the ball to the quarterback.  The coaches have a playbook and some are referred to as plays for individuals who receive the ball.   I had only recently heard my son Jake was a receiver in one of these plays.    The trainer said to my son’s dad, “Be sure to use Jake’s play in the next game.  He’s getting confident and he’s ready.”

Now, that seems like a pretty generic statement.  But to a parent like me, who like all moms have a healthy amount of Mommy-Guilt, in addition to the guilt of not personally caring my son every day, I did a little happy-dance in my head.  (I hope.  I am pretty sure no one else saw me dancing in my seat.  One can never be too sure sometimes.)

I was excited to hear from a total stranger, that my son was becoming more confident, and ready to take on new challenge  That even though I left my son’s hometown to pursue what some may be viewing as a midlife crisis, my son was growing up healthy, happy, confident and a kid who knows he’s loved.  As a parent, that is the best possible outcome, no matter what the custody arrangements or income.

So, next time you see a family and the ex-wife and step-mom get along, and it seems nontraditional to you, please consciously replace the word nontraditional with happy.  Because no matter what the family dynamic, a happy family is one that works together to provide what’s best for their children.

 

Healthy, happy, confident, loved and knows he’s loved. Who can argue with reults like that?

Scleroderma Project: Beneath The Surface, Should be Seen by Everyone.

 

The title of my last post is, “I Hate The Documentary, Project Scleroderma: Beneath The Surface”.  I thought about changing the title, but I have decided to keep it, and follow up with this post.  I take you on a scenic route to my point, so feel free to jump to the paragraph that is headed in bold type, for my point.    There is nothing simple about scleroderm.  Every patient is different.  

The documentary itself, is a labor of love by those who created it.     I have seen clips and is very well done.  This documentary

See Project Scleroderma. Learn about scleroderma and share link with friends.

is needed because it informs and educates.  What I may have failed to relay in the last post, is that in addition to my denial,  I hate the lack of education throughout the medical community.    And then there is the issue of  spell check here in this Word Press program, that insists on auto-correcting scleroderma to sclerosis.  I’ve been acutely ‘aware’ of scleroderma for over twenty years.  To say that I am beyond frustrated about how little people know about scleroderma, is an understatement.  Luckily there are people who care enough to donate their time and money to amplify the voices of those with scleroderma.

For twenty years, I have been raising so-called awareness.  Friends and family “like” my blog’s Facebook Page, but never share my posts.  I wouldn’t mind that so much if they weren’t so quick to share every Bible verse or “Save the Tatas” meme.  I haven’t had the guts to say this to friends and family, until now.

Dear Family and Friends,

Thank you for asking me how I’m doing and offering to help out, but I would really appreciate it if you would follow up with action like sharing things from my blog- or at least reading it.  These memes that you post like “Share if you agree cancer sucks”, seem nice.  But I think we can all agree you are sharing the obvious.  How about sharing something about an illness that few people know about like, oh I don’t know.. maybe scleroderma?  It’s great to see all your selfies at breast cancer runs and the swag you spent a ton of cash on, but when I post about fund raisers why is it so quiet?  Seriously all you have to do is share and donate a dollar when there are fundraisers.

There are many of you who do, but you know who you are.

XXOO

Karen

This post may be too honest, but it’s not like anyone reads my blog anyway.  I have avoided speaking out to friends and family on Facebook, because I don’t like to complain, and let’s face it:  More people have been affected by things like breast cancer.  But just because another disease gets more ink, that doesn’t mean I shouldn’t speak up every now and then and say: Ahem.. Over here please!

Yesterday, I posted about hating Project Scleroderma:  Beneath The Surface.  And if I can express my feelings about dreading to watch the documentary spearheaded by a woman who lost her mom to scleroderma within four months of her diagnosis, it would be irresponsible of me to be honest to strangers and not my friends, family or acquaintances.  What it boils down to, I hate having something no one else has heard of.   I hate that people share something every day about cancer or God, but rarely share about scleroderma.  I hate being a scleroderma patient.

Scleroderma: Beneath The Surface, will help spread the word about scleroderma.  Every day, I am reminded that there is very little publicity about scleroderma.  I was recently told by a customer service representative at the Social Security Disability office, that her understanding of scleroderma is that it’s a skin condition.   I wasn’t rude about it, but I did explain to her what scleroderma does to a human.  That it’s far more serious than a skin condition or rash.  She was shocked, and I was encouraged by her willingness to learn.  I was both encouraged and annoyed that someone who works with disabled Americans, thought scleroderma was just a skin condition.  Just thinking about it, makes my hair hurt.

Just because scleroderma doesn’t  have the coverage breast cancer “enjoys”, I do not want to diminish how serious breast cancer is, and how its publicity has saved lives.  Of course breast cancer continues to kill men and women and still there is so much to be done.     Many organizations have made progress because of generous donations.  What I see in addition to this great work, is a new industry, and that is something I am not fond of.

We don’t have to agree about everything, but we do agree scleroderma needs to be cured.
So many wonderful  Americans,  found ways to fund treatment for patients who could not get it, with fundraising.   That is a wonderful and selfless accomplishment.  And somehow, all of these good intentions have created the Disease and/or Cause market of swag.  We all love swag.  I don’t know about you, but swag that tells me I’ve done something good gives me a warm and fuzzy feeling.   Swag needs to be manufactured, marketed and sold.  Swag has become profitable when added to big named brands.   Do you really believe the National Football League would come out with all that Pink merchandise, if they did not profit from it?

I think it’s wonderful when communities come together.  Meanwhile, many individuals who belong to these communities, complain that giving all citizens access to healthcare, no matter what they could pay, is wrong because it’s socialism.  Now, before you stop reading this post because I do argue for universal healthcare for all in The United States, hear me out.

People have told me for years that I deserve the best, because I am a veteran.  I disagree.  I deserve the best because I am a human being.  I believe all who are in the United States should have access to the care they need, not what an insurance company or government program is willing to pay for that specific care.   Sure, I’m a veteran and I have scleroderma. But wouldn’t my family feel that I deserved the best possible care if I were not a veteran?  What if I was you daughter, sister, wife, mother or child?  Would you still feel that it would be okay that  I am denied treatment because I cannot pay for it?  I am also arguing is that veterans have friends and family,  they would like to see get the medical treatment they need.  (One, two, three, what are we really fighting for?) I have had access to the greatest treatment at the time, for scleroderma after fighting in both the VA system and private sector with what was nicknamed, Golden Insurance.

When things were going well for the business my ex-husband and I owned in the early 2000’s,  I chose the company’s health insurance plan.  Back then, no matter how much money my spouse made, no insurance company could provide the comprehensive coverage I needed, due to my pre-existing condition of scleroderma, unless I was employed.  So, I worked from home and chose such a comprehensive package for our company, it was one of the many reasons our company went bankrupt.  I already had access to great care at Loma Linda Veteran’s Hospital.  The Chief of Rheumatology told us that my prognosis was getting worse.  That if we had private insurance, he would recommend me to a colleague who just happened to be the Chief of Rheumatology at UCLA Medical center.  That admission of, “I don’t know what to do next, but I’m going to find someone who might”, saved my life.  I owe my life to this great rheumatologist who knew the difference between doing what’s best for his patient, and doing only what he could.  Of course, my ticket to the land of affordable second opinions, was money.  (That reads funny to me as well, and it’s not my grammar.)

If I did not have insurance, my rheumatologist could have referred me to the West Los Angeles VA, which could have taken months.  Meanwhile, Veteran’s health Care was overwhelmed with casualties returning from Iraq and Afghanistan.  The Veteran’s Healthcare system was already overcrowded and underfunded before two wars.  My yet to be diagnosed sarcoidosis was simply written off as a symptom of scleroderma, and nothing could be done.  So my appointment with a UCLA associated rheumatologist might have taken as long as a year to be seen.  My difficulty breathing was dismissed by local doctors and emergency departments in Murrieta and the Loma Linda VA hospital as a symptom of scleroderma.  I know this because these things were written in my medical records by whatever resident doctor in the Emergency Room was, who just happened to have little experience with scleroderma patients.  At UCLA, my biopsy was expedited because after my pulmonologist at UCLA reviewed several of my chest CT scans from other facilities, he read in the notes that I should have further testing for lymphoma.  Following the recommendations of the radiologist’s report of these scans, was a another note commenting the testing for lymphoma results was unnecessary because I had a pre-exisiting condition of scleroderma.  The pulmonologist at UCLA ordered a PET scan and the lymhnodes in my chest lit up like a Christmas tree on steroids.  There had to be a biopsy done, because everything pointed to cancer.  A biopsy of my lymph nodes and lungs were done less than two weeks later.  Granulaomas known as sarcoidosis, were found in my lymph nodes.  This discovery was huge.  My rheumatologist at UCLA ordered a medication that my Golden insurance company and Veteran’s Healthcare formulary, both required the failure of two other drugs before using Remicade.  So, my rheumatologist provided the golden insurance company evidence to support my need to skip right over the formulary, and allow for Remicade.  It took some time, but in less than six weeks, I received my first infusion of Remicade at my local hospital in Murrieta, not eighty-five miles away at UCLA.  The cost was $22,00o per infusion.  (Yes, that is a five-figure number for one dose of medication that by the way, saved my life.)

There is no way of knowing for sure if the Remicade stopped the scleroderma from hardening my lungs or the sarcoidosis from making my lymhnodes so large, I would be unable to get the proper amount of oxygen in my blood and my heart would fail.  What I do know is that eight years after my diagnosis of sarcodosis, I maintain a stable prognosis.    My treatment with a medication that was $22,000 a pop was transferred to the the Veteran’s Hospital at Loma Linda.  The rheumatologist who ordered it there, the Chief of Rheumatology presented evidence to counter the formulary restrictions, based not only what was provided to my Golden Insurance’s formulary, but my progress since the treatment began.

There is a continuity of care requirement for medications that are benefiting a patient when there is a change of insurance.  I was not able to stay on Remicade because simply because I was already on it.  There was a record the Golden Insurance company had, of the valid research backing this decision, and there was evidence that in my case, no matter what was being suppressed by this strong immunosuppressant, the drug was working.  At this time, there is no way to know of knowing what Remicade worked to fix.  I am one patient with both scleroderma and sarcoidosis.  Both chronic illnesses are rare and I have yet to know of another human with both.  My rhumatologist at UCLA, who is a leader in scleroderma treatment around the world, just recommended what he thought would be best, based on research that existed at the time and his experience.  (The world reference is not an understatement. My doctor is **Dr. Daniel Furst.  Go ahead.  Google him.  We’ll wait…)
But what does this have to do with a documentary about scleroderma?
I live in Southern California.  My location alone, allows me access to doctors who have experience with scleroderma, and/or who are actively overseeing and doing scleroderma research.  The Veteran’s Hospitals in highly populated areas like LA and Loma Linda are teaching hospitals where young minds go to learn and make progress in treatment and diagnoses because they are med students working with those who teach, do research and have mountains of experience and work, they can build upon to improve care.  Teaching hospitals are where progress in treatment are made, and save lives.   UCLA doctors and faculty are the specialists who see patients at the West LA VA.  Not everyone has as good an outcome as I have had.  I am aggressive when it comes to my care.  Being able to fight for my care, and get it, has a lot to do with my location.  If I lived in Bakersfield, I would have to drive, or take a bus provided by the VA, to see doctors at the West Los Angeles, VA.  Why do I know this?  Because there are not enough facilities for veterans to get the care and specialization they need in Bakersfield.  They travel to LA.  This is nothing unique.  When I lived in La Crosse, Wisconsin, I had to travel three hours by car, one-way to get the care I needed.  At one time, I lived across the street from a hospital that consulted with the Mayo Clinic.  Yet I still had to drive three hours one way to see a rheumatologist my VA Healthcare would cover.

Doctors need to be educated, and get the most current information and resources available to treat their patients.  Patients should not have to cut medication in half so they can get almost the right dose they need, to save an insurance company money.  In fact, insurance companies are the consumers to pharmaceutical companies.  The statement: “Cutting medication decreases the cost to the consumer”, is incomplete.  Sure, it does cut the cost to both patient and insurance company.  Production of medication using the same dosage, increases the profit a pharmaceutical company makes because it does not have to pay for the production costs of a smaller dose of the medication.  So we’re inconveniencing and sometimes hindering the care of  patients to save a buck.  Someone has to make a sacrifice, and it’s going to be a company who answers to shareholders.  The company or insurance company does not serve the consumer (patient).  It serves the bottom line and it’s shareholders.

From my perspective, medication is viewed as a luxury item, by those who don’t need it.  Medication is not a luxury item.  Medication extends, improves and saves the lives of We The People.  Should anyone be denied lifesaving treatment, simply because they cannot afford it?  No, but this has become The American Way.  Because providing healthcare to all that is paid for by the Federal Government would be socialist.  Yet aren’t we entitled to “Life, liberty and the pursuit of happiness”?  No, because for some reason it has become the norm to deny people medical treatment they are unable to pay for, and allow them to die.  Wait, I know the reason.  It’s because we want the freedom not to pay for people less fortunate, like those who are sick and disabled, taking advantage of hardworking Americans.  People have limited access to treatment and qualified practitioners.  When something the government creates to help those who need medical care but can’t afford it, many companies who benefit by profiting on expensive medication, spend millions to stop expanding care to people who can’t afford care.  Not because they are cruel, but because it’s in the best interest of the shareholders.  A company cannot be cruel or compassionate.  It is a company and exists merely to earn a profit, no matter how helpful they appear.  (Companies are not people, my friends.)

Finally, my point:
Scleroderma Project:  Beneath The Surface, needs to be seen to show that swag is not what patients need.  Sure, swag is nice and don’t we all look good in pink or teal on Instagram at the most recent Race for The Cure?  I’m tired of swag.  I’m tired of merchandise.  Why is it that the disease with the best lobbyists gets all the funding for research?  I would love to see less people dressed in a color for their cause, and more money going straight to research for their cause.  I don’t hate the documentary itself.  I hate what the United States has become and that we need to show people suffering slow, painful deaths to prove that research for scleroderma needs funding, and is not simply a skin condition.  So download the movie, watch it then share a link to it and say a little something about it when you do.  The world needs to learn about scleroderma.  Watching and sharing is what you can do to help scleroderma patients like me.

Download Movie

 

** Dr. Furst educates rheumatologists around the world.  If you would like to find a doctor near you, please contact the Scleroderma Foundation by visiting Scleroderma.org  and you will find a doctor closest to you that has proper experience and education.  Dr. Furst works with my team of rheumatologsts who treat me through the VA.  This is because of my geographical location.  

Be sure to visit Project Scleroderma on Facebook and like their page along with Scleroderma Research Foundation and The Scleroderma Foundation.  Thank you!

 

I Hate The Documentary, Project Scleroderma: Beneath The Surface

Prologue
Like most of my posts, I start with a topic, then go  ‘off-road’ with a personal related story and get back on track.   I have tried to change that, but this is after all, my blog.  Enjoy the crazy!

I hate the documentary called Project Scleroderma: Beneath The Surfce
For the longest time, when I  heard the name, my heart would swell with feelings of resentment. I justified these feelings by telling myself this documentary about scleroderma, only showed worst-case scenarios.  That people live well with scleroderma if they just stay on top of symptoms. My justification is one big fat lie I tell myself to avoid the reality of what is happening to my body.

See Project Scleroderma. Learn about scleroderma and share link with friends.

Since my diagnosis in 1994, I have said a resounding, “NO”, to scleroderma.  My body, my mind and my heart scream “NOT ME”.  I am not going to be that club-handed and disfigured patient lying in pain that is the face of scleroderma.  I am certainly not scleroderma.  The truth is, that is exactly scleroderma and that is something I fight to avoid facing.  After more than twenty years of treatment for depression, I have learned there is nothing that will make me face the inevitable hardening of my lungs and eventual death.  Hold on, there is one thing that will pull me out of this depression and off of these meds: if it stopped and the damage is reversed.  (Hey, a girl can dream.)

I used to lock myself in my bathroom and scream silently, wishing the scleroderma would just stop.  Have you ever have those nightmares where you scream and there’s no sound?  Yeah, that.  Only it’s real.  And when the scleroderma stops in reality,  I’ll be dead.

Is it so terrible I live in denial that something is grotesquely disfiguring my body as it slowly kills me?  No, it’s not terrible at all.  (Lala Lala Lala I can’t hear you!) Because that is how I get up every morning.  I am always surprised when I see my hands every day.  I have to ignore my hands to get out of bed.  I can’t accept that God has a plan.  Because if God does have a plan, I have nothing kind to say about God..  I joke about making margaritas on the Handbasket to Hell, Because if there is a God, and if we meet, I would try to kill him/her.  So I prefer to believe there is no god.  It makes the most sense.  And if you’d like to tell me that when I am faced with death that I’ll start praying, I will tell you that is bulls&*!.  I have nearly died three times that I know of, and been clinically dead once.  There is no bright light.  And dying is actually quite relaxing when it’s not painful.  I speak from experience.  You know what terrifies me more than death?  Looking sick and in pain.  Not the kind of constant chronic pain people with chronic illnesses are forced to suffer because a bunch of non-ill people abuse pain medication.  I dread the pain of my body rotting and the feeling of the nerve endings dying.  If you have never felt a piece of your own body as it turns black and dies, I don’t recommend it.  I was in the hospital with a rotting thumb and nurses refused to contact my doctor as I begged for pain medication.  It wasn’t invisible.  They could see the necrotic tissue of my thumb die before their eyes. But according to them, I was just being hysterical.  They had never heard of such a thing.  And I also heard them say that I probably did it to myself to get pain medication.   And here are some more of the hits:  “Her thumb isn’t rotting off.”  and my favorite, “It’s all in her head.” That sore turned gangrenous, then tissue around it started to die.  An arteriogram had been done before I went into the hospital and it showed that the arteries to my thumb were completely choked off.   My thumb was getting blood back-flowing from the vein.  (Who are they going to believe?  Their own eyes? Not a chance.)

Oh, and if you are reading this and you are a nurse, I can hear you when you think I can’t. I love nurses, but I have met some real winners.

The funny part of that story, is that was in 1996 at a Veteran’s Hospital.  After loosing part of my thumb, my care was transferred to the Madison Veteran’s hospital, where they stepped up and began treating my illness.  But of course, the problem of nurses acting above their pay grade still happened recently In 2013, I heard similar statements at the nurse’s station at the Long Beach Veteran’s Hospital in the long term care unit.  The only difference is, we can add,”One day she’s going to wake up and not be able to move.”

Because I guess I was not having a reaction from 30 days of morphine, as evidenced  by my chart from prior hospital stays when I had a rash, the medication Benedryll was given to me in a higher dose, and the rash was quickly resolved.  The “wake up and not move”, were one of many comments of nurses who insisted on their own expertise based on their time working in a glorified nursing home.   They were mostly overworked BSN’s who did the jobs of CNA’s.  I actually had to teach them how to change the needle on my port-o-cath.   When I refused an IV into may arm and after one nurse finally figured out a patient should not be teaching nurse how to do their job, they got someone in to show them.  This manager was pretty upset when he found out what was going on.  Also, many nurses shared their beliefin the power of prayer.  In the beginning, I thanked them for their well wishes, and politely remind them occasionally that I don’t believe in God.  One nurse even told me I wasn’t taking good care of myself because I did not believe in God.  I do love nurses, but I love freedom from religion more.  I have made more than one nurse cry after they have put my life in jeopardy,  then I think of nurses who refuse to listen,  I have dealt with through the years and my guilt just disappears.  I don’t make nurses (and some doctors) cry for my entertainment.  It’s usually after they have made a careless mistake, or base my care on their experience with nothing related to the symptoms I have.  That and I hate them telling me that God loves me and has a plan, especially after I tell them I am an atheist.  It’s so disrespectful.  I don’t try to talk them out of their faith.  Why do they insist on talking me out of my lack of faith?  I guess that’s a whole other post.

Wow.  That was a rant.  I have left it in so you can get a glimmer of the judgement and doubt by practitioners, family and friends, scleroderma patients get:  This post talks about my time after scleroderma was diagnosed.  I can’t imagine what it would be like to go years with mysterious symptoms and being told it’s all in my head.  Oh wait, I did.  Again, whole other post.

I avoid things that point out the reality of scleroderma.  It’s what keeps me from drinking my  bottle the liquid morphine I keep.  Not to kill myself, but for pain.  I want to numb myself from feeling everything that has been damaged to my body.  Luckily, I love my family and friends and even more, I love myself too much to check out or keep myself over-medicated. (A little narcissism every now and then can be healthy.)

I greatly admire those who lead and participate in support groups.  I cope by paying attention to my symptoms as they come, getting treatment and finding things to do that have nothing to do with scleroderma.  I don’t participate in support groups.  I will assist in raising funds for patient support, I just choose not to get my support from other patients.  It’s not because they are fellow patients.  It’s because I do not want scleroderma to be the reason we hang out, and our only topic of conversation.    You may think that is selfish.  Maybe it is.  But it’s what works for me.  I share stuff in my blog.  That’s how I am able to help others.   It’s what works for me.

Project Scleroderma is a wonderful project that is going to help present and future scleroderma patients.   It’s well made, full of the horrifying reality of what scleroderma does to the human body.  And that’s why I can’t watch it, yet.

In 1999, I nearly died of depression.  I didn’t realize it, but I had stopped eating.  It was triggered by a failed study of treatment.  I was forced to see that scleroderma was going to be a long, slow and painful death.  It took years of therapy, medication and had a large role in what lead to my divorce.  And here I am, still alive.

Yesterday, I hung out with my son and played Smash Brothers on our Wii U.  The day before that, we went to Disneyland because we have annual passes.  And the day before that, on Valentines Day; my son and I went on a strenuous and beautiful hike in Griffith Park.  I have an amazing life that I would not trade for anything.  In September, my brother is getting married to an amazing woman I love dearly.  And I can’t wait to see my sister, brother in-law and nephew who will be here for the big party.   There is nothing that will motivate me more to keep fighting, than the life I have ahead of me.  And it won’t be easy.  I might get my heat broken a few times.  I’m going to have to keep going to auditions after being rejected.  After bombing during a set I wll convince myself to listen to the recording of me dying on stage to improve my set.  I’m going to have to do the dishes instead of throwing them into the trash.  I can drive seventy-five miles one way to pick up my son.  The stuff that people worry about- the medical stuff; to me that’s just like brushing my teeth.  A trip to the emergency department is just like a trip to the dentist.  Having to correct a pharmacist and tell him or her I will not cut my dose of Viagra to save the Veteran’s Administration and in prior cases, insurance companies, money, well that’s just fun.  It’s one of those silly, petty things that allows me to feel like I’m in control of something.  And of course, I horrify my family sometimes when I use humor to cope with what scares me.

Many of those involved with Project Scleroderma:  Beneath The Surface, have witness first hand as their loved one died while they could do nothing.  There is nothing anyone can do to stop death, once the symptoms of scleroderma become fatal.  Nothing except treat symptoms as they appear and slow progression with immunosuppressants. But times, they are a changin’.   (Immunize your damn kids, by the way. Please and we on immunosuppresants thank you.)

Twenty years ago, people diagnosed with scleroderma were told to get their affairs in order and prepare for the worst.  Thanks to research that has brought about treatment by non-profit organization.  This of course is not a cure, but we’re getting there.  Scleroderma is different in every patient.  There are amazing treatments available to patients whose doctors know about them.  (See the problem there?  We need to get the word out.)  We need to get doctors educated about scleroerma so they can offer their patients the bet possible outcome, while they wait for a cure.
Honestly, I don’t believe there will even be a cure in my lifetime.
I dare you to prove me wrong.
(Seriously.  I’m tired of being right most of the time.) 

Epilogue
Someday, I will watch the entire Project Scleroderma, documentary. Right now, I am busy coping with the progression and damage scleroderma has done to my body by simply getting out and doing what I want .  I usually don’t like to ask others to do what I wouldn’t, but I’ve lived with this for over twenty years.  I think I’ve earned a pass.  The Scleroderma Project, is a reality I don’t wish to face.  I will be forced to face it soon enough when my lungs stop working.  For now, I’m going to proof this, maybe do a Brazil Butt-Lift work out.  (Just because my hands are messed up, that doesn’t mean I can’t have a fine ass.) Then go on a long hike while listening to Foo Fighters.  So while I’m busy living, please watch and recommend Project Scleroderma.  Share what you learn, what you have done or what you would like to do, for patients with scleroderma.

You can find Project Scleroderma on Facebook,    Twitter  Website

To learn more about scleroderma:

NIHS: Facts about scleroderma.

Scleroderma Research Foundation, a partner of The Scleroderma Project

Scleroderma Foundation

Federation of European Scleroderma Associations Facebook  Website

Scleroderma Care Foundation of Trinidad and Tobago

If I forgot anyone, please send me a message on Facebook – Karen

And now, a shameless plug:
I’ll be at The World Famous Comedy Store  February 25th.  Because laughing has only made me stronger.  And, I could really use some butts in the seats.  Click here and get your tickets at the door.  $10.00 two drink minimum.  This is up a flight of stairs.  Visit my comedian FB page, hit “like” for information about upcoming shows.

People Who Claim to be Pro-Life Confuse Me.

Douchebag: (Doo-sh-bag) n.  One who works to outlaw safe medical procedures for women while insisting vaccines should be optional.
Use in a sentence:  Sean Hannity  should visit countries where vaccinations are rare and see what the measles do without treatment or prevention.  Sean Hannity is a Douchebag.

The term Pro-Life, is a like a dog whistle, but instead of sound, the Pro-Life Whistle uses identity.  Those who identify themselves as Pro-Life, hear the words, ‘Pro-Life” and start arguing against any idea that suggests women who have abortions are not cold-hearted baby killers.  We who have have had abortions are not cold-hearted baby killers.  We don’t wake up and decide to go have an abortion to earn points  on a punch card to receive a free one on the eleventh visit.  Abortion is a medical procedure.  And for many women, it is the dreaded choice after exhausting every option to have a healthy baby, or save our own lives so we do not orphan the babies we already have.  Also there’s a choice we make to have an abortion because it is what is best for the person making the choice.

As someone who has terminated a pregnancy, I speak from experience.  It is absolutely none of your business why I had an abortion.  I’m really only admitting it because we are still fighting to keep it legal for 40+ years.  That, and I don’t give a rat’s ass what you think of me because I decided to do so.  I will give you a hint:  My birth control failed, there was no Plan B option at the time, I was in my 20’s and it had nothing to do with saving my life.  I have heard people say things like, “Women use abortion instead of birth control.”  In my 44 years, I have met only one woman who  does not use contraception of any kind and has no qualms about terminating a pregnancy if one happens through carelessness.  This does not make me an expert on abortions, but that does tell me how few people I have experienced on my path, who have done that, and that is her right.  I don’t have to agree or disagree with anyone when it comes to their own body.  The people who will pay the cost of restricting rights to safe and legal rare procedures, are all women.

If you don’t believe in abortion for any reason, then don’t have one.  Please stop spouting misinformation and harassing women who are forced into situations you cannot possible imagine.  Please get out of our ovaries and do something that will actually help children; like funding free lunch programs, free day care or preschool programs, and domestic violence treatment and prevention.  Don’t hide behind some passage in The Bible and dare to call yourself a Christian, then  mandate pain and suffering onto fellow humans.  Yes, I have terminated a pregnancy, long before I even had scleroderma.  If I were to get pregnant today, I would terminate the pregnancy because I will most likely die,  and honestly, even if new information came about that revealed I would be fine, I’d still terminate the pregnancy.  I don’t have to justify it.  I can’t rely on oral birth control due to high blood pressure likelihood, and risk of stroke.   I cannot risk an invasive sterilization procedure because my body destroys its own cells.   I must rely on a thin piece of rubber and if that breaks, I have Plan B to keep a potentially fertilized egg from implanting itself into the lining of my uterus.    It’s my body.  How dare you judge me for decisions I  make regarding my own well being. If you get pregnant, do what you feel is right.  Stop trying to regulate my ovaries and uterus and proclaim vaccination should be a choice.  T here are diseases that are killing people who are suffering and in great pain.  Doing something to help those in need of a cure, and need assistance while waiting.   Stop obsessing over zygotes and fetuses.  Take care of those who are out of the womb.  Stop calling sick people lazy and vilifying the poor.  Stop watching Fox News, and pick up a book.   Don’t regulate my ovaries and proclaim vaccinations should be a choice.

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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