What I Would Tell My 23 Year-Old Self When I Was First Diagnosed With Scleroderma Part 1

Moved.  For this post, click HERE

Crossing The Streams Wearing Nothing But Lipstick

Update:  This fundraiser was a colossal failure.  But this is a decent post about an extended hospital stay, by a patient.  

Good Sunday Morning!   


My intention was to post pictures of me wearing only lipstick.  I just bought a new color and for the first time it's a dark red.  But then, I got lost in the shower.  

The following post includes references to Ghostbusters and how you can shop to raise funds for scleroderma research and education for not one, but TWO organizations.  Don't worry, there will still be pictures.  

I've been in the hospital for 9 days.  Sure, I've taken showers, but I have not washed my hair because use of the wrong products will destroy it.   Just one shampoo with the Pantene so generously supplied by my host, will cause clumps of my hair to fall out.  This is not an exaggeration.  That stuff is poison to my scalp.  Actually to anyone's scalp. Have you read the label?

Long story short:  OH.  MY. GOD. That was an awesome shower.

Before the magic of my "selfie" photo shoot.

A lot goes on in the shower with me.  (Stop that.) I daydream in the shower so long, I refer to it as  getting lost in the shower.  Last night, deep in the nether regions of my mind, mid-shower,  I had an idea.

I was mulling over my new job as an independent sales rep, (Brand Ambassador)  for Votre Vu, the fundraisers I launched with my cousin at Origami Owl the week before I was hospitalized, and how the hell I was going to follow through with my commitments while attached to an IV with my feet in the air.  Then, it struck me:  It was time to go full throttle on "crossing the streams."

I wanted to keep my business and writing separate, in other words, keeping those "streams" separate.   The more I thought about it, the more I realized that in a perfect world, it would still sound insane.  I was starting to feel like I was about to be killed by a 100 foot Marshmallow Man, and I realized it was time to cross the streams.  

In the movie Ghostbusters, they saved the day by doing something with no guarantee of the outcome.  (Look, if you haven't seen the movie yet, you are too young to be reading this blog. No whining about "spoilers" in the comments.)

Make up: Votre Vu
Lip color: Ma Cherry
Hair by Maria Vitale Salon

Now What?
So, now that I'm going to be in the hospital for a minimum of six weeks, rather than show you the worst of scleroderma, I'm going to write about making the best of it.  Life hands us a bag of dog crap sometimes and we have to learn to make the best of it.  So if you want to read about how awful and soul sucking scleroderma is, read some studies, research and medical articles.  Here, I am going to make living with the effects of scleroderma beautiful and victorious.  It won't be perfect.  I will have my ups and downs.

Anyway, enough of that long winded intro to the next six or more weeks of my life.  Let's start by crossing some streams:

I have two fundraising soirees going on right now.
I will donating 20% of sales for each soiree to their respective host organizations.  You can shop at one or both soirees.  You will receive an email how much of your sale was donated to which organization who's soiree you shop.

Me, sans make up.
Why yes, that is telangectasia.

You can look up these soirees by name.  Here is how: 

1.  Go to www.VotreVu.com/TheMightyTurtle and Click "shop"

2. On the right side of your screen you will see: "Can't make it to the soiree?, Click here to look up your host".

3.  A form will pop up that asks for the first and last name of your host.  Type "Scleroderma" in the first name box and two names will show.  One will say, "Scleroderma"-  That one is for the San Diego Chapter of the Scleroderma Foundation.  Another will say, "Scleroderma Research" - and that one is for the Scleroderma Research Foundation.

4.  Note, you are not restricted to shop for only one, but to shop for both foundations, you cannot do that in the same "shopping" experience.  Each soiree is independent.  And if you spend over $75.00 at each soiree, there are benefits for you the customer and you don't have to choose.

FAQ

1.  WHY 2 Scleroderma fundraising foundations?  Why not choose one?  

Me, wearing nothing but lipstick.
It's my new favorite color,  Marguax

Simple:  They are both great organizations with a great deal to offer patients, doctors and research.  Many patients are alive today because of the work both of these foundations have done.  

For example, I bet you have donated funds to more than one cancer foundation.  Each foundation has a different focus like emphasis on research, or more emphasis on patient education and support groups.  They are different, but they are all on the same team.  The team to cure cancer.  Just like in our case, we are all on the same team to cure scleroderma.

2.  Karen, what's in it for you?  

Well, it boosts my sales numbers and I still make a small amount of commission.  To fully disclose, I make 30% commission from sales.  I will be donating 20% of that 30% I earn to each foundation.  I considered donating the whole 30%, but I should probably cover expenses like time, and create the ability to pay for the host gifts for each foundation and donate to the foundation hosting to use for future events.

3.  Are those the only soirees you do?
Well, I do have my own soiree I am hosting because I want to earn Les Sorbet for $25.00 instead of buying it for $165.00.  All proceeds to my own soiree go to me.  Don't shop there.  Shop at the fundraising soirees.  I am disclosing I am having my own soiree because maybe someone wants to shop at all three.  But honestly, these fundraisers have hit the ground with a thud, so don't shop at my soiree.  Shop at the fundraising soirees and tell your friends!

4.  Can I host a soiree?  
Yes.  I can book you an online soiree only.  If you would like to have one in your home (which is really the best way to try the product) I have  awesome Brand Ambassadors who would love to help you host the best possible soiree.  Now, if you are worried about my benefitting from the soiree because you would like to patronize my business, no worries.  These brand ambassadors are on a team I lead, so I will benefit from this.

5.  Brand Ambassador sounds like a great job for me.  How can I learn more about becoming a Brand Ambassador for Votre Vu?
I would love to tell you why I chose to represent Votre Vu, and feel confident recommending and wearing Votre Vu's products,  tell you about their generous compensation and incentives. (LOVE THEM) Visit my  online store or Facebook page and we can talk.

6.  Do have to sign up to shop and get the best prices?
No.  Period.  Flash sales offer a great way to get higher priced items at a discount.  With Votre Vu, you can shop with confidence and no commitment. (In fact, there's one going on that ends December 8th at 10pm pacific.  They're serums & it's a good one!)

7.  Karen, Can't I just donate straight to these organizations?  
Yes, absolutely!   Here are the links:

Scleroderma Research Foundation- Bounce to a Cure Cure Crew Page 

Greater San Diego Chapter of the Scleroderma Foundation

Thank you very much for taking the time to learn about how you can shop for a cause this holiday season, how to donate directly to what it is that I do for Votre Vu, and how you don't have to sign up for anything to enjoy luxurious French Skin Care!


So, there you have it.  I've crossed the streams.  See you on the other side.

Usually, I feel naked without make up.
It's amazing what a great color lipstick
can do! 

"Life is what happens to you while you're busy making other plans".

Goodreads quotes it by Allen Saunders, but I always think of it from the song Beautiful Boy, by John Lennon.  I can't think of a truer statement to advise any child.

This holiday season was the first time I remember actually feeling the Christmas spirit;  the anticipation of seeing family, tree hunting with my son, and decorating our pine smelling treasure neighbors would see from our window in our our apartment on the beach.  I was looking forward to big family gatherings and hearing my son laugh with his cousins, like a song I never want to end.  The holiday season is magic and I was looking forward to ringing  in the new year with our friends on the beach, holding my son with pots and pans at the  ready to make noise at midnight.  Yes, I was busy making plans.

Then, for many of us with plans, life happened.  I was admitted into the emergency room after Thanksgiving Dinner.  One week later, I was diagnosed with an infection in a bone in my toe called Osteomyelitis.  If untreated, or not caught in time, the infected bone would have had to to be removed.  Luckily, because of my proactive attention to my body, and wonderful healthcare provided by the Veteran's Administration, I have access to the best treatment there is:  six weeks of IV antibiotics every eight hours.  

I am unable to administer the IV antibiotics at home, so I will be admitted into a long term care unit here at the VA, where I will be able to get my medication dispensed without the risk of missing a dose, and the ability to keep my foot as immobile as possible.  I don't like to ask fro so much help, but this is a situation with no room for error.  I am very attached to the bone in my toe.

On the surface it sounds like the end of the world.  And
yesterday for about an hour, it was.  Then I decided to change the plans I had.  Of course I aways have a choice,  I can complain about not getting  the holiday season I wanted with son, but that would be an invalid complaint.  And for me, unless a complaint is going to bring about change, I refuse to waste my time with them.   So, however will I get through what could be the worst possible holiday season ever?  Easier than one would think.  I jet have to adapt my plans to my medical needs.  Sure, it could suck, but it doesn't have to.

My son can come visit me and we can have small adventures. There is art to be done, lunch in this amazing city of Long Beach and  playing in the park between infusions.  We can take what life has "happened" and make it special.  Sure, there will be no tree in our home or baking cookies and decorating, but I bet we can find a good bakery to bring back to my room.  And even though I won't be able to ice skate with him as I planned,   there is a google of things to do, I just need to look them up and see what other adventures we can have.

Life gets ugly at times, but ugly times never last if I look for what's possible.  Everything worth having, takes some work and some things take more work than others.  And yes, sometimes, I do want to crawl into a ball and sleep until the ugliness passes.  I tried that in the '00's and I missed an awful lot.  And I do take time to process these things that happen that interrupt my plans by drawing under my covers for a short pity-party.  I have learned to keep my pity parties t a short guest list of one, and leave very early.  It's okay to grieve over a loss, but it's even more important is to move on and don;t stay so long at those pity parties.  Wel, at least that's what works for me.  

So this holiday season, my son and I will making up plans as we go along.  We will be together, and there is nothing more magical.

Pain Medication Is A Tool I Use Often

I am so sick of the phrase, "I don't want to depend on pain medication."

No one wants to depend on pain medication.  But given the choice of spending the day with my son with pain in the background, or staying home writhing in pain, I will take my pain meds every day and twice on Sunday.

Scleroderma is not going away.  My hands are never going to be the same.  Changes in weather will always affect my pain levels.  But if I sit still and wait for the pain to go away, I will curl up and die.  I know this to be a fact because I tried sitting still and it nearly killed me.  

I have many more adventures in my future
because of pain management w/ medication.

For years I allowed what I allowed what other people thought of me, to determine my use of pain meds.  Look, a good buzz is fun, but I don't get that from Captain Vicodin (Thank you for the name Stephanie Wellborn Kennedy (@Steph_In_NC) Captain Vicodin is my friend and has helped my body benefit from movement I would not have done, if I did not have such an amazing tool.  Because that's what pain medication is- a tool.  

And I don't say these things lightly.  There are many stupid doctors who will hand a patient they have no idea what to do with, a prescription for 600 Percocet and say, "Take that as often as you like."  Yes, that happened to me.  That turned into 8 Percocet a day. My doctor did not think in the long term.  For years I was treated as though I would be made to feel comfortable until I dropped dead.  Surprise!  I'm still here.  The doctor did not take into account that Percocet was fast acting, strong and had a short life.  It is because doctors misuse prescriptions because they don't know what they are doing, and patients end up with medication that does not work for them.  

Chronic pain is long term.  It's not going away. As patients, we need to make pain tolerable.  Yes, I said tolerable.  I have never been pain free since 1993.  When a nurse asks me what my pain level is, I laugh and  I answer, "A constant 2."  My hands are curled.  I have no fat pads on my feet.  I am constantly bumping my hands into objects and sometimes people.  There is no such thing as pain free.  Of course I'm not okay with that, but I don't have any more time to spend in therapy to talk about how pissed I am about it.  I have a 10 year old son.  I live ON THE BEACH.  Life is whizzing by and I spend enough time at the Veteran's Hospital, so pass the antidepressants and sedatives when needed.  I'm going outside.  

Look, getting to this point took a lot of time.  So if you find yourself saying things like, "I don't want to become addicted to pain medication."  You know what?  People take cholesterol medication and eat hot dogs.  You know why?  Because they are out enjoying their lives.  They have a healthy diet, but they have a treat every now and then.  Taking pain medication so that I can tale a shower easier is not a treat for me.  It's necessary.  And you now what?  When, I do I find I need less pain medication throughout my day.  Normally, I take one Vicodin in the morning and usually, I do not need another the whole day.  There is more to pain than what's causing our pain.  

Look, I could go and do a search for research about pain management and exercise; exercise and depression; etc…  Do the research yourself, learn about your own body, and train your doctor(s) and family.  Take control of your life (Yes.  Yes you can.)  Take your pain meds and use them smartly and as a tool, because that's all they are.  If you are using pain medication for "the buzz", you are not in enough pain to be using pain medication.  Depend on them.  There are very few things we can control with a chronic illness.  If you can control or tolerate your pain because of a few pills, do it. 

When someone tells me that I "shouldn't depend on pain meds", because of "their ideas", I ask them to do this:  "Go outside, rub your knuckles on the blacktop.  Then walk through some broken glass.  If you can sit tight with that pain, I'll stop using my pay medication for my chronic pain.  Because that's what my chronic pain feels like if I don't keep my pain under control."  

Take your pain meds.  Be smart about it.  Don't let people who create the suspicion of abuse tell you what you should do.  They are uninformed.  As patients, it is often our job to educate family and even health care providers about scleroderma, sarcoidosis or whatever chronic illness we have.  Be your own best advocate.  Because all medical decisions are ultimately yours, you are the captain of your medical team.  

Hernias, Ponies and Turtles

First, Lilith was too independent, then it was the serpent in the garden, then we started naming storms after women and an obstacle that blocks a sphincter is called a hernia.  That's right- "her"nia!  Does anyone else think this is a bit one sided?  Hang on because this is going to be a rant...

Yesterday, I had another upper endoscopy.  I have had so many upper endoscopies, I don't even know how many I have had.  That's right, I have swallowed a camera so many times, I was surprised to wake up this last to and not remember he procedure.  Someone finally got my dosage right on the anesthesia and I don't remember a thing.

Everything looks good.  No mention of Barret's Esophagus.  I was handed a report and full cold pictures of my esophagus and sent on my way.  Could it be that the tissue on the inside of my throat no longer resembles the inside of my lower intestine.  And if so, does this mean I am no longer talking our my ass?

My Hiatal Hernia is one centimeter.  This made me wonder for the first time, how big are hiatal hernias?  I wikipeidia'ed it and still no answer.  I'm going to need to ask a doctor or spend more time n research, but I am short on time.

I have muscles to rebuild.  I don't have to rebuild anything.  The one thing that has been made clear to me for years is that no one expects me to do anything.  Doctors don't mention exercise to me, I mention it to them.  I would say that overall, I am messed up in the head (I know, this isn't news to you) because I have to motivate myself to get up, even though it hurts.

The damage is done.  BUT I can regain some strength by exercise and eating right to be here longer.  It's like starting over in my 20's again, without the cuteness and optimism of youth.  Where do I even start on his recovery way of thinking?

I'm 43.  I was supposed to be dead and I'm not.  Don't get me wrong, I am really happy about that.  Actually, I'm pretty excited about it.  And because I'm here I'm convinced there is no such thing as a midlife crisis.  It's only a crisis to those who see me deviate from their expected path and become worried I will get hurt.  (Yes, I know I just made this about me, but it's my blog.  It was always about me.)  Now, I'm seeing myself truly off the path and I like it.  It feels like a crisis because I'm in uncharted territory.   But it's not really a crisis, it's about realizing what I want and going after it.  I want to be able to play mini golf with my son and walk for miles. I would really like to play basketball, and  pony that sneezes glitter and rainbows.  I know that some of the things I want can be had.  So what's stopping me?  Me.  So, this is me unstopping me.  In a blog.  (By the way I really want to thank my 5 readers.  I love you guys!!!)

Look, this post started with a rant that goes nowhere.  That is a pretty accurate description of my life, overall.  I reach for something, then stop for some reason.  I couldn't even maintain a Scleroderma reddit for corn sake!  At age 43, I have to begin to follow through with my goals.  Some of my goals were not achieved for health reasons.  Some were not achieved simply because I chickened out, mostly because I was afraid of something.  The something was usually something I created that really didn;t exist except for the power of limitation I gave it.

So now what?  Honestly, I don't know where life is going to take me next.    So, I'm going to put one foot in front of the other, keep my doctor's appointments, exercise, eat right, be with my son as much as I can, and choose my battles carefully.  I feel like I'm just getting started.

And Now, A Pep Talk.

This was taken from a post I wrote and shared elsewhere, then edited into this blog post.  For those of you who don't have scleroderma, feel free to replace the word "scleroderma" with your chronic illness.  We have different diagnoses, but we have so much in common.  Don't let a disease name deter you from an honest pep talk riddled with salty language.  

Greetings Fellow Patients!  

I want you to know how strong you are.  I don't need to tell you all that you are in a fight for your lives.  I write this blog to share what works for me and after reading some statuses, I think some of us could use a good pep talk.   I'm about to speak to you in a manner that keeps me going at times.  I'd ask you to forgive the salty language if it offends you, but sometimes a little  foul language mixed with humor, and blunt honesty, is exactly what we need to hear. Those of you who have experienced boot camp can relate.  (By the way, can you believe people actually pay to participate in boot camp fitness?)  

Cancer Sucks
First, I am so tired of patients complaining about how "cancer gets all the publicity".  No big-name celebrity has scleroderma. A big dose of viagra and lesbian porn couldn't help get a rise with the name scleroderma, it's so unsexy.

When patients drop dead, scleroderma is mentioned in the obituary. Those who the deceased invited to walks and fundraisers for years come out of the woodwork to cry at their funeral, and walk in their memory.  Everyone has a bonding, cathartic moment.  Promises are made to do it the next year in the memory of the deceased, but guess what? Life goes on, which is exactly what the deceased probably wanted.  The deceased needed that love, support and a cure while they were here.   I know, it's a pretty brutal reality, but that's the way it goes.  It doesn't make those loved ones bad people.  We all don't know what we really have until it's lost.

There are not enough months in the year, or colors in the rainbow for the diseases that need curing, treatment and funding for research.
Fundraising is not our fight. Our fight is for our lives. F*ck awareness already.  We are acutely aware of scleroderma and so is our family.  If you want to be aware of my little heard of disease, read about it. If your "friends" seem to act only because they were prompted by a Facebook status meme to get all worked up over a cause, offer to assist them in removing their head from their ass and send an email about your messed up disease they cannot spell or pronounce.  We can't control their response.  If they do nothing, maybe it's to much for them,  so use your energy for something else.  Getting angry because people post all kinds of cancer stuff on Facebook and ignore scleroderma is a waste of good energy scleroderma patients need for the fight.

I've been writing about scleroderma and raising "awareness" since 1994.  Friends and family who don't share my every post, surprise me every now with how they have taken time to learn about my scleroderma and sarcoidosis.  They strike up a conversation that's helpful and supportive outside of Facebook. True friends don't need to share their empathy and support for you.  It's one thing to share something about a patient not close to us, but it's a different ballgame when it's your sister, or best friend.  So give your friends a break.  Or don't.  Just redirect your energy to the fight instead.  Are you patients picking up what I'm putting down?  People care about us and it can be so painful for them they don't know how to express it. And if they think you are faking it or it's "all in your head", unfriend them or make them an acquaintance and move on.


Scleroderma is a big part of our lives, but it doesn't own us. Our fate is not in god's hands until we are dead. We, are not dead. We may be in a great deal of pain, near death, or about to have a close brush with it. Those are facts. It is up to us as patients to be our own best advocate, because this is an orphan disease. Yell where it counts and kick down doors to get what you need. No one is going to do this for us. It sucks- I know. Suck it up and fight. Take breaks when you need them, depend on pain pills because they will help you manage pain. If the pills cause side effects, take the meds to help fight the side effects if it means you get to keep your fingers.  Ulcers do heal! Viagra gives me a headache, so I drink coffee in the morning.  Ask your doctor, (make sure it's one who keeps up with current research) what temporary  things you can to to get those ulcers to heal, or hang in their with that medication that causes side effects that seem unbearable, but preferable to death or gangrene.

We get crazy advice.
Well intended, crazy advice.  For example: "Try  Cayenne  for your Raynaud's Karen."  Cayenne pepper might help circulation, but my epiglottis doesn't close and I can't feel stomach acid from the heartburn cayenne pepper causes because my esophagus is scar tissue.  There is no peristaltic movement in my esophagus, hence making "hot dog down a hallway" an actual medical term.   So remember good buddies, advice comes from a place of caring, but anyone who tells you that you can beat scleroderma with a vegan diet, or herbs is a fucking idiot. Smile at them, thank them for caring and move on. Do your research. See what foods harm or help you.  There is no magic bullet.  If your doctor doesn't know what to do, find one that does and if you can't change doctors, educate the doctor you have. If they don't listen, be persistent.  Eventually, they will have to listen, to get you to shut up.  Be the squeaky wheel.

Friends who feel better because we have it "worse" than they do.  
I hate that.  I hate hearing someone sharing what's troubling them, then feeling a need to say to me, "I don't know why I'm complaining, you have it so much worse."  Unless I am engulfed in flames while someone is sharing their woes with me, I don't have it worse or better than anyone, and neither do you fellow patients.  We are all stronger than we can imagine.  When "shit gets real" we all step up.

F*ck Cancer, F*ck Scleroderma, F*ck Sarcoidosis, F*ck "Name Here"
Scleroderma is not the only fucked up orphan disease that does not get enough publicity. No disease is worse than another. They all suck. If you get an ulcer, don't wait for your god damn fingers to fall off; learn woundcare, debreeding and what drugs you can use to get blood to save as much of that body part as possible.

Be your own hero!  

Just because there is a "worst case", that doesn't mean it's going to happen to you.  FIGHT!

My hands look like shit because Viagra wasn't available to me until 2005.   I battled depression and it nearly killed me.  But you know what I am able to do now? Lots and lots of stuff. Sure I can't play guitar anymore, but I can sing like Robert plant playing the video game rockstar with my son.

Do what you can, grieve what you have lost and move on! You can do this! Stand up to those ulcers and brushes with death. I was not expected to see 30. I'm 43 now. And I've got many years ahead of me. Parts of it will suck. But I won't stop fighting to be here and keep what I've got. And it drives me to get out of bed every day, even when I feel like I've been beaten by a baseball bat in my sleep.

Need more inspiration?  Click here and ROAR.

The Michael J Fox Show Is More Than "Just a sitcom" to Me.

I am so excited about Michael J Fox returning to television.  He has a progressive illness (putting mildly), and has found a way to move forward, and giving this a try.  As someone who is asked why I want to work after all that I have been through, and all that may happen, this is more than just a sitcom.

I am thrilled, inspired and stoked about Think/Able  I've been doing it for years and people now get to see it as a possibility.  Because hey, nothing really happens unless it's on the TV machine.  Everyone's experience is different, and not everyone with a chronic illness recovers to be well enough to go back to work.  But I love that this series plants a seed that patients with chronic illness don't have to crawl into bed and stay there.  That if patients are able to survive the worst or manage their symptoms, that life can begin again.  Of course, it may not be what we had planned.

Two Saturdays ago as I enjoyed an afternoon of training for a new career path.   I was a bit in awe for two reasons.

1.  At age 30,  I could not imagine I would still be here at age 42.    I thought for sure scleroderma was going to rob me of the amazing life I have had since 2001.  Scleroderma added giant obstacles, but I'm still here.

2.  There I was taking on a new career quite seriously.  It's not the nursing career I imagined in my 20's and I didn't care.  I felt like I was in the right place.  I can manage this schedule and I have faith I will achieve my goals.

The Michael J. Fox show is fictional.  I don't have Parkinson's.  But people with Parkinson's, Scleroderma, Sarcoidosis, Lupus, Diabetes and too many things to list here, have shared experiences like loss, grief, victories, successes and weird-ass medical experiences.  I am excited for Michael J. Fox the human, who is working with what he has, and stepping out there to do what he loves.  He gets to go back to work making people laugh.  I am going back to work to play with make up and people.  When I was a teenager, I did want to be a make-up artist.  So yes, I get to do what I love as well.  I'm back at the beginning.  I'm no spring chicken, but I have the heart and drive of an 18 year old.

So, what can you do?  Check out The Michael J. Fox Foundation on Facebook, or anywhere on the web.  Tune into the show tonight, but don't spoil it for me.  I have to miss the premiere because I may not make it back in time from Krav Maga with my son.  Watch the show.  It's fictional, but behind fiction and humor is some truth.  And as the foundation put so well into words, Think/Able.  Learn about it, and be inspired.

What?  You don't have Parkinson's?  Hey, we are in this together.  Progress in one disease helps research of all diseases.  So check out The Michael J. Fox Foundation. 

To learn more about scleroderma, start here with the Scleroderma Research Foundation, but they are not the only "church" in town, but they are the best place to start.  

To donate to help find a cure for scleroderma, check out Bounce to a Cure  and make a tax deductible donation for research and patient education.  

And if you feel like doing some shopping and would like to show support for this blog, check out my online store, here.   (that was a shameless plug btw...)

A Look At Recommended Steps to Take After Diagnosis

Posted July 10, 2013, edited September 3, 2013

I recently  I read an article by Agency for Healthcare Research and Quality.  They presented 5 steps to take after diagnosis.  As a patient with scleroderma for 20 years, and diagnosed with sarcoidosis after years of symptoms, these steps sound very nice, but were unrealistic, at least in my case.  Don't get me wrong, these are great ideas in a perfect world, but the world of healthcare in the United States is far from perfect.  So, I'm going to comment on each step.  Please Note:  This is entirely opinion based on my experience.  If you find my comments useful to keep going, and not be deterred, awesome.  If you would like to tell me to go to hell, awesome.  Let me have it in the comments section.  We only have to agree that scleroderma and sarcoidosis need to be cured.

Read the this aloud to yourself as a reminder.

If you have healthcare and never denied a test or medication, this is the perfect plan.  The following steps are verbatim from The Agency for Healthcare Research and Quality.  My comments are in italics.  

Step 1: Take the time you need. Do not rush important decisions about your health. In most cases, you will have time to carefully examine your options and decide what is best for you.

- In 1994, there were very few treatment options for scleroderma.  I was given a leaflet, a nifedipine prescription and sent on my way.  My choice was to quit nursing school based on no information, move back to California from Wisconsin and get lots of rest, or stick with nursing school with no idea what to expect.  It took me two years to get diagnosed with scleroderma.   Luckily, I was in the Navy for one year and half of that time.  I did not miss a paycheck because I needed to stay home sick or go to a doctor.  How would that work for someone else?  I was in the military and guaranteed a paycheck.  What about someone who lost their job because they called in sick so many times while trying to get diagnosed with weird symptoms like blue hands, swelling and nerve pain?

Sure, my diagnosis was 20 years ago, a lot has changed because of research, but people in remote areas are having trouble getting the right diagnosis and care.  Just do a google search of scleroderma blogs, and you will read how patients are trying to get a diagnosis or care, or getting denied disability benefits because they do not have the proper diagnosis yet, because their doctor is unfamiliar with scleroderma.  You would be surprised what little information people making decisions or giving advice have about scleroderma.  

In a recent conversation with a representative of Social Security researching adaptations for patients with scleroderma, she asked, "Why would someone with scleroderma need adaptations?  It's a skin condition."  I explained to her that scleroderma was not, "Just a skin condition."  She was very receptive to the information I provided her, but she is one of many who are trained to speak with people in need of life saving benefits and she thought Scleroderma was a skin condition.  We have lots of work to do! 

Step 2: Get the support you need. Look for support from family and friends, people who are going through the same thing you are, and those who have "been there." They can help you cope with your situation and make informed decisions.          

Lovely.  In a perfect word where family and friends understand that a chronic illness cannot be seen, this is a great idea.  The truth is, many patients suffer for years before diagnosis, because they feel crazy telling people they trust their symptoms and they are met with responses we have all seen in memes all over the internet.  Oh, where to begin!  Here are a few:

1.  You don't look sick.  Check out The Spoon Theory by Christine Miserandino. It's a great post about "Not looking sick"
2.  It's all in your head.
3.  You need to exercise more.
4.  Then, there is the gossip some experience:  She's a hypochondriac.
5.  Scleroderma sounds like a skin condition.  It's in the name, so it must not be serious.Okay, enough of that, you get my point.  First, we have to explain what scleroderma is to our family, while we try to grasp what it is, without panicking during every search on Google because people post wort-case to get attention for awareness.  I can't blame them for trying, but it leaves little hope to newly diagnosed patients.  More and more patients are surviving scleroderma, but only those who have access to the best healthcare and educated providers.  

Step 3: Talk with your doctor. Good communication with your doctor can help you feel more satisfied with the care you receive. Research shows it can even have a positive effect on things such as symptoms and pain. Getting a "second opinion" may help you feel more confident about your care.

Speaking of doctors... When I moved to Murrieta, doctors here had only heard of scleroderma.  They mistook my symptoms of sarcoidosis for scleroderma symptoms because they knew nothing about sarcoidosis or scleroderma.  First, a patient has to find a doctor willing to do more than give the diagnosis and "wait and see".  Make sure you are seeing the right specialist, a rheumatologist.  Not to mention getting baseline tests of lungs, heart and upper GI.  Now, if you are newly diagnosed, have a full time job and have "Golden Insurance", this is not a problem.  I have a request: If you have an experience to share, share it in comments to encourage other patients not to give up.  This is a journey riddled with roadblocks by people paid to keep cost down.  We have to become our own best advocate.  And by we, I mean you who are reading it who are frustrated.  I have to drive 2 hours one way to get the proper treatment for my hands.  It sucks, but it is what it is.  I bring my dog and stop at the beach after.  I do it because since 1999, OTs at two nearby Veteran's Hospitals would not work on my hands.  I was told I was a lost cause.  Since stopping the OT I received through the Wisconsin Veteran's Healthcare System, my hands have since atrophied and now we are working to get some range back.  

Step 4: Seek out information. When learning about your health problem and its treatment, look for information that is based on a careful review of the latest scientific findings published in medical journals.

Visit at a hospital, or medical school library and ask the librarian for help.  Medical journals often post only abstracts of a study online, which is a short blurb about findings.  Google it without experience and it's the perfect way to diagnose yourself into thinking you are dying.  Before you research, ask your doctor for the proper keywords and journal names.  I don't want to deter you, I want to encourage you to find research foundations that research your specific condition.  For Scleroderma in the United States, I recommend The Scleroderma Research Foundation.   Their funds go directly to research and education.  They have one office.  As far as fundraising goes, they are nationwide.  The Scleroderma Foundation is a great place to go for support groups, education and research as well.  They have chapters all over the United States with many offices around the country.    Many are all volunteer, some have paid staff amd some are simply support groups.  They provide great services, and funds are raised for each region.  

Watch your back, Jack.  There are some online patient communities that offer counseling services without licensed counselors or ask you to donate to participate.  I am sure they do some good, but they claim to offer counseling services by unlicensed counselors.  I once worked with a former mentor (emphasis on the word former) placed plants in her closed groups in the early days.  And I have noticed there is a bot that initiates contact with people who tweet certain diseases, on behalf of my former mentor's newly formed foundation.  But, don't take my word for it- or anyone else's for that matter.    If you find yourself in a group and it doesn't feel right, go with your instincts.    If you see a group going after an individual or shuns members, that is a huge red flag. 

Step 5: Decide on a treatment plan. Work with your doctor to decide on a treatment plan that best meets your needs.

Great idea.  A treatment plan is an awesome idea!   Now the trick is to find a doctor who knows more than a thing or two about scleroderma, or your condition in your area.  You may have to travel, but it is worth it.  This is a chronic illness and your life depends on how well your care is managed.  I know scleroderma, so I will refer the two organizations I trust to help patients without requiring a donation or membership.  These organizations count on donations from people other than patients. If you pick up the phone and call these foundations, they will give you information over the phone for free.  
1.  The Scleroderma Research Foundation Contact Info and Downloads for newly  & not so newly diagnosed patients
2.  The Scleroderma Foundation  Contact info and Downloads for newly & not so newly diagnosed patients.   

Patient Communities:
Very helpful.  I recommend the following:
1.  Treatment Diaries   Outstanding community founded by cancer survivor, Amy Ohm.  They will not ask you for money to join, and it's a great way to connect with fellow patients.
2.  Inspire:  Another great online patient community that will not ask you for money to join.  

My comments about those 5 steps are based on my 20 years with scleroderma.  Many autoimmune diseases have similar symptoms to fibromyalgia, lupus, rheumatoid arthritis and drugs used to suppress the immune system for cancer treatment, like methotrexate are often used in the early stages of scleroderma.

I would like to add that If you are newly diagnosed or seeking better care because what you are doing, don't be afraid to look at how people with other diagnoses are coping.  We share the same experiences like loss, grief, anger depression and so much more.  My diagnosis of sarcoidosis was accidental.  I went to 4 different ER's before UCLA took my trouble breathing seriously and and did the tests  that lead to a lung and lymph node biopsy that provided the sarcoidosis diagnosis.  Until I was given Remicade because of the sarcoidosis, my symptoms were progressing of both the scleroderma & sarcoidosis.  I had to fight for the recommended Remicade and bypass 3 other medications that needed to try and fail before using remicade because of cost.  Since 2007 and receiving Remicade with Methotrexate, the pulmonary fibrosis in my lungs has stopped progressing.  Fighting for care sucks, but it's exactly what we have to do to get what we need when someone says "no" due to cost.  If you take anything away from this post, I urge you to keep fighting.  It's hard.   I;m not going to lie, there were times I wished for death. I would tell myself, "I wish this was over."  Until I realized my scleroderma was not going away and over, meant death.  I made it through the worst of it.  I think it is luck I am not dead because many die from scleroderma every day.  I'm here because it was not my time.  I continue to heal and become stronger because I am my own best advocate.  There are times I put my foot in my mouth and make mistakes.

If you skipped to the end:

Advocating for yourself is on the job training, even with help.  And there is no shortage of people looking for minions for financial gain or to fulfill some messianic fantasy.  So, watch your back, Jack.  Rest between battles, because you won't win every single one.  Somedays, your only goal needs to be to live to fight another day.  Most important, the best possible outcome may not be what you want.  It may take compromises, like giving up certain foods and activities and worst of all (at least for me) asking for help.  If you have to give things up because you can no longer do them, take time to grieve, but try not to let it consume you and it times, it might but you can crawl out of the jaws of what's consuming you.   There are no guarantees in life, but there is hope if you look for it.    Keep looking for hope.  We all have limited time here, cherish what you get.  I never said this would be easy.  I still struggle at times, I take antidepressants, I see a psychiatrist to manage my meds for anxiety and have a checklist of depression red flags for me.   Exercise and writing are my outlets.  My happy place is time with my son.  My dogs get me out of bed every morning.  Find your tools, then fight.

Plants Don't Bark

You know those friends we have that help us move, confide in and think they know us better than anyone? We claim they know where we have "hidden the bodies" or help us tend that graveyard of skeletons in our closets.    They don't know anything compared to our pets.  In my case, it's my dogs.

This is a "shaming picture of my dog, Murphy.
I found this BBQ grill brush in her crate.
Thank goodness there is no site to "shame" dog parents!

My dogs have seen things I would never share with my friends.  They come into the room when I get out of the shower, I don't kick them out of the room if I'm having sex and I don't leave the room if I'm having a private conversation on the phone.  My dogs not only know where I hide the bodies, they know why exactly they need burying.

I am often asked if I still have my dogs. Let's face it, two dogs plus a kid, in a one bedroom apartment isn't exactly ideal, but dogs are not disposable. Just because I have gone from a Mc Mansion in the 'burbs, to an apartment in the city.  They bark when I would rather they be quite.  They need to be feed and walked, and they are not shy about reminding me with a bark if I'm stalling them while I'm involved in a Twitter chat.  Yes, dogs are work, but it's the good kind of work.

Plants come to my home to die, because lets's face it: Plants don't bark.  Last year, my son gave me and his stepmom tomato plants.  Every time I go pick up my son, I smile at the tomato plant thriving in my son's step-mom's yard.  It's a beautiful plant that brings an abundance of tomatoes, while my gift has decomposed and contributed to the growth of the grass in a backyard somewhere in Murrieta.  I'm okay with it, and so is my son.  My son knows I am far from perfect, but he does know I love him and a dead tomato plant has only taught him to deal with disappointment.  (My parent of the year award  must be lost in the mail.)

Murphy, Flapjack, my son and me circa 2004

My dogs get me out of bed in the morning.  It used to be my son, but he is with his dad half the time.  Children also grow up.  Soon he will be a teenager and will be too busy being angry with me to wake me up early and only rely on me as a food source.  But my dogs, they will never reach puberty.  They will nurture my maternal instincts because they can bark.  I was reminded this morning that my dogs keep me going.

I woke up to hear Murphy with her usual growly wine to take her outside.  (Flapjack will be here after September 1st.)  I opened my eyes and immediately noticed I had no air conditioner, my mouth was bone dry and my body just ached, especially my hands.  I did not want to get out of bed, but I could not let Murphy start barking.  (This is why plants die in my home- they can't bark.)  If  I don't have to get out of bed in the morning and I feel awful, I won't.  I think that's why I prefer living alone.

When a human stays with me, they take into consideration that I may not be feeling well, and will take the dogs out for me, to let me get the rest I might need.  It's really nice sometimes, if I do need a break- don't get me wrong.  I will admit, that with scleroderma and sarcoidosis, rest is good, but only sometimes.   I can lay in bed all day and I will not feel better.  If I get up, it takes me less than an hour to shake off the blah to push through pain that comes with living with a chronic illness.  For me, my state of mind can be my biggest motivator or  my biggest obstacle- but that's a whole other post.

Flapjack, after finishing a great book! 

Back to this morning: I threw on a hoodie over my Callahan Auto Parts shirt, pants (this time), shoes and take us out.  As soon as the door closed behind us, I saw the early morning sky and my mood was instantly lifted.  I walked out onto the sidewalk (because dogs aren't allowed on the beach) and I instantly felt better.  (I'm okay with no dogs allowed on the beach.  I like laying in sand that doesn't feel and smell like a giant litter box.)  I walked us to where we could both enjoy a view of the ocean. When we returned to the apartment, I resisted my urge to go back to bed.  Sure, I could have if I wanted to, but I wanted to get outside and see more.  Yes, of course my son motivates me every day, but he's not here every day.  My dogs are no substitution, they are part of our family.   I may look like an overgrown teenager from the 1990's with my t- shirts might read; Callahan Auto Parts, Saturday Night Live Quotes or Caddyshack movie quotes at 6am, but I make them look good.  Especially when  I walk my dogs, for whom I am grateful to every day for getting me up, and moving.

I need to create widgets, until then you may also find me on Facebook & Pinterest

Paraffin and Scleroderma: Comments on an article about scleroderma.

August 13, 2013

There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.

Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have "essential oils", but if they come in a plastic container, they are not true essential oils.

Undiluted essential oils should  only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can  nourish moisture starved skin because it will penetrate, not coat.  Essential oils can appear more expensive, but you need less of the product.  To find the best essential oil for you, don't be shy about asking for samples or asking for a low priced sample to take home and try a few days.

Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one.  I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin.  Currently, I use Votre Vu's Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it.    If you have something that works, don't go searching for an essential oil.  (If it ain't broke, don't fix it.)

Ahhh, Paraffin.  It is nice...
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought...)  was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients.  A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits.  A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath.  When I first started exercising again in 2005, I would take a shower before and after.  Warming up those muscles before warming up, is good for body and mind.

The professional manicurist in me speaks up: 
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.

1. Patients with raynaud's have a bigger risk for burns with paraffin. If one with raynaud's were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud's patient may not be able to detect the bath is too hot. Thermometors can fail.

2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.

Tips for using a parrafin bath for patients with Raynaud's:

1. Place hand in plastic paraffin bag, then dip bag into paraffin.

2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don't be discouraged by a little mess)

3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.

4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.

Never, EVER use paraffin wax when you have an open wound or pressure sore.  Yes, even a paper cut.  Don't make me show you pictures of infected wounds- it's nasty!

For more information:

Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.

Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma

Raynaud's Risks and Prevention

The Scleroderma Society

Tips for Living with Scleroderma, by Scleroderma Research Foundation

To help fund research for scleroderma, visit: Bounce to a Cure

FAQ for Raynaud's by The Raynaud's Association

Handy Hints for Raynaud's by Raynaud's & Scleroderma Association, UK

Visit The Mighty Turtle on Facebook for more scleroderma organizations.

Scleroderma Awareness Month is Over...

As a scleroderma patient, I feel this would be my time to list my wishes.  Of course World Scleroderma Awareness Day isn't Christmas.  But the last hour in the month of Scleroderma Awareness Month is a great time to make requests.   You know how we tell our kids to make a list for Santa, the Great Pumpkin or "NAME HERE". Because even if there is no Santa, the Great Pumpkin or "NAME HERE", there is always an eager parent or loved one looking to fulfill at least one wish of many, on a list of wishes.  Right now there are researchers working on a cure to fulfill at least one of my wishes.  And there are doctors trying to fulfill the wishes of patients around the world.   Yes, I am equating researchers and those helping them to Santa's Elves.  They do they work they do because someone, somewhere said, "I wish I could help."

So, how about the Scleroderma Giraffe?  Yes, my "NAME HERE",  being will be to the Scleroderma Giraffe.  And instead of elves, the Scleroderma Giraffe has gnomes.  (What?  You don't like the Scleroderma Giraffe?  Write your own damn blog.)

Dear Scleroderma Giraffe,

First, I would like to say that it is really cool that you are able to have your head so high, then bring it down low to drink water, then bring it back up without passing out.   That is really cool.

I have a lot to ask, so I've narrowed it down to two.

1.  You know I'm going to ask for a cure.  (I had to ask.)  Click here for the Peter Griffin Argument. 

2.  Okay, how about some more of those breakthroughs in research?  Thanks for the break throughs so far, and I look forward to celebrating more.

Well, I think that covers it for now.  I could  go on for days with requests, but I would really like it if you paid less attention to what I'm writing and get back to helping the gnomes with research.  I know you are able to read faster  because of your giraffe magic, but there are lots of patients who can't wait one extra minute.

Sincerely,

Karen

Scleroderma Awareness Day

As a patient, I don't need a day to make me aware of scleroderma.  

Today, you will read about patients fighting for their lives and treatment.  I'm going to do something just a little different: I'm going to show you what I can do because of treatment available for scleroderma patients.

I am here because of research and exceptional care.

I also am here because I have learned to be my own best advocate.

I am also still here because scleroderma is not my life.

Instead of providing a list of  how it's not, here are some pictures of me fighting.  This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.

If you have scleroderma, remind yourself it does not have you.  If you don't have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.

I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease.  Twenty years ago, I did not think I would still be here.  I certainly didn't think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.

 

What would I say to someone newly diagnosed with scleroderma today?

I  would say:  Expect the unexpected.  Don't give up even when it feels hopeless.  Get treatment for depression.  Exercise.

Scleroderma is going to knock you on your ass.   

It may take a while, but you can get back up.  There are no guarantees, only hope.  Keep going.  Get back up after you get knocked down, and get your hair pulled every now and then.

A very special thank you to West Coast Krav Maga, and Kevin!