Scleroderma Is A Terrible Name

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

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

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

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

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

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

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

 

Scleroderma

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

 

June is Scleroderma Awareness Month

 

a·ware·ness

əˈwernəs/

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

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

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

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

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

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

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

 

 

 

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?

 

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!

 

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. 

 

 

.

Laughter May Be Best Medicine for Scleroderma

Okay, maybe not the best, but it helps.

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

 

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

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

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

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

When It Comes to Scleroderma, I’m a Chicken

Or: Please allow me to reintroduce you to my booby.  

...Well, it’s not really my booby.  It belongs to everyone.

June 24, 2014

I have been keeping this to myself for years and what a better time to talk about my fear of scleroderma during Scleroderma Awareness Month.

After my diagnosis, I wanted nothing to do with scleroderma.  I avoided support groups not only because the ones I had been to mostly consisted of grandparents, before my son was born; I did not want to see my future.  I did not want to see what happened to long term scleroderma patients.  And 20 years later, scleroderma scares the bejesus out of me.  I want nothing to do with scleroderma, and I keep on running.

Scleroderma does painful, debilitating and ugly things to patients.  And I am so afraid of becoming disfigured,  I will do anything in my power to get away from scleroderma-like activities, like asking for help.   I work hard to be able to exercise.  I sometimes injure myself doing things I prefer to do myself, than have others do for me.  Do I need counseling to work through the stages of grief to get to acceptance?

I have never claimed I don’t need psychiatric help, but quite honestly, I don’t want to accept the whole death-by-hardening-connective-tissue that the universe has in store for me.  I have accepted parts of the results of scleroderma.  Like resting when I need to; spending hours in doctors offices, labs and tests; I have a port-o-cath in my chest, and I wear clothes that show it because I want to be an example for my son;  I have moved to be closer to specialists who know what they are doing so I don’t end up dead because of  a medical mistake.  Yes, that does mean I live away from my son.  Right now, I am abusing the English language with  punctuation errors.  I can’t really blame scleroderma for that, but for our purposes in this post, I’m going to blame scleroderma.

Unless it is medically necessary, I want nothing to do with scleroderma.  But this post is not a cry for help.  I’m sharing this because of all the crazy things scleroderma has brough into my life, nothing scares me more than Juvenile Scleroderma.

Have you seen what this can do to children?  Click this Link  Take your time and read about it.  Go ahead, we’ll be here when you get back…

Why can’t we do anything to stop this in children?  Oh wait, we can.  We don’t have a cure yet, but there are organizations who have researchers working on ways to treat it effectively.  There are two organizations, one in La Jolla, and the other in Michigan, who have found a way to stop fibrosis and reverse it.  There are organizations raising funds for scleroderma research with comedy fundraisers, galas, and walks.  there are individuals having bake sales, and it will never be enough until rheumatologists all over the world can recognize early symptoms to give patients a better chance with early diagnosis and treatment; and of course, a cure.

We have a lot of work to do, and I need your help.  Please learn about scleroderma please go to an event or make a donation for a cure.  It makes me furious that all diseases without effective treatment, must seek funds for research and treatment.  There are some pretty horrific ones out there, even more terrifying than scleroderma, but I’m not writing you about those diseases.  I want you to know how terrified I am of scleroderma, and even more terrified that people are being diagnosed with it every day, and then must wait to see how exactly scleroderma will change their lives forever.   Scleroderma is different for every patient.  Symptoms of scleroderma can exist as separate diseases.  How messed up is a disease that some components that make it a disease are other diseases?

In order to make my point, I have brought back our pal, Drew, The Blue Footed Booby.  He made his debut last year. When you see Drew, please help by sharing his picture and help share the word about scleroderma.

Thank you.

Scleroderma Awareness Month

 

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

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

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

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

You might be thinking two questions:  ”

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

2.  Are you high?

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

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

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

 

Scleroderma: Part of The Adventure

I recently announced my scleroderma may be in remission.  According to Merriam Webster,  remission (is)  a period of time during a serious illness when the patient’s health improves.

Remission was my word, not my doctor’s.  I have also heard from other patients who will not use remission as well.  The general consensus is, although the definition of remission does fit, and it doesn’t say permanent or temporary, remission is accepted as ceasing of the symptoms.  It fits when referring to cancer.  The cancer is somehow eradicated by treatment, and while in remission, patients do not experience symptoms of cancer.  The difference with scleroderma is, that scleroderma may run it’s course, or symptoms may be controlled by medication, but blood work, and symptoms show scleroderma is present.  The best term I have heard so far in reference to this is referred to as a “holding pattern” by patients and their doctors.

For me to say that I may be in remission is incorrect.  Symptoms will flare.  I will still have good and bad days.  When I spoke with my doctor I was elated that I may have lived long enough to be through the worst of scleroderma, I threw around the word remission, carelessly.  I apologize to you, who are kind enough to read my work regularly, and new patients looking for information.  I was talking about scleroderma incorrectly, and  I am s very sorry.  Of course, I still have sarcoidosis, but it’s symptoms are very mild for me.  I write more about scleroderma, because it’s just more aggressive in me than sarcoidosis.

I was very swept up in the possibility.  One of my best and worst coping mechanisms, is denial.  Like all patients with a chronic illness, I do not want to be sick, labeled as sick or live my life as if scleroderma defines me.  It works well for me, until I get swept up, as I did with the word, “remission”.

The last few weeks, I have been working through depression.  It is something that affects me more than scleroderma, in body and mind.  Scleroderma is a life-long commitment no one volunteers for, but we can choose how we cope with it.  A friend of mind gave me a name for my technique, he told me I am like Lt. Dan, from Forrest Gump.  I liked that comparison because it felt like it rang true.  Like Lt. Dan, I am angry about what life has handed me.  I never ever want to be referred to as handicapped or disabled, and don’t get me started with God.  I of course will not climb up on a shrimp boat mast and curse God during a hurricane, but I am certainly not going to worship God or pray.  (That’s a whole other post.)  For me, accepting scleroderma will always be a part of my life is a sore spot, but I do it.  That may be why I have a great deal of patience with everything else. Traffic or long lines seem like minor things, and a waste of time to get angry about, because eventually a long line will move.

Scleroderma has taught me to live in the now.  I am not in remission.  I may be in a holding pattern, but I will need infusions and medication for the rest of my life- and it will not be cut short.  That may seem unrealistic, but to me that is one thing that is not.  Scleroderma, childbirth and a severe head injury have thrown a lot at me these past 43 years.  I have a lot of life left, and there is treatment for my symptoms.  I will continue to work hard to stay healthy, which we all need to do, scleroderma or not.   I have not yet reached mid-life.  I have a ten year old son, and I plan to see him walk on Mars, and meet his children.  Life is full of obstacles. I choose to make obstacles, part of the adventure.

Hope Is Afoot

Every time I think of things being “afoot”, I think of the movie, Bill and Ted’s Excellent Adventure.  I also just started watching House of Cards, and I have compulsion to editorialize what’s going on to an imaginary camera.  Both events are most likely symptoms of too much TV and way too much time alone with my dog.

 

Tomorrow, I have an appointment with my rheumatologist at UCLA.  Today, I spoke with my primary care provider’s case manager (At the VA Hospital) and arranged to pick up my most current blood work.  I am really liking the VA in Long Beach.  The case manager wants me to contact her tomorrow morning with my doctor’s recommendations.  I do miss the rheumatology department at Loma Linda VA, but driving less was worth the move.

 

Today, I finally accepted what I already knew:  That I do not need a home health  care worker here with me 6 hours a week.  I’m too active now, which feels very good.  When I have to rearrange my schedule to be home to have help, I don’t need it.  I need someone to clean for me, not take care of me.  That’s a huge milestone.  After 45 days in the hospital and weeks of recovery, I’m now too active to have a nurse come over and that feels very good.  I know my family may be reading this and cringing, but they already know I’m not good at sitting still.  Today, though a Monday, was a great day!  I cleaned my own apartment.  The living room no longer looks like a laundry station.  My dog is exhausted and walked.

 

I gathered my test results and read my doctor’s notes from my last appointment.  My prognosis was good with a balance of diet and exercise.  I feel well most of the time, but I can tell my body is dragging from not exercising.  That’s really the last piece to pick up after that 45 day interruption.

 

So, tomorrow is the big day.  Back for my quarterly check up with my rheumy at UCLA.  Things are looking up.  Now the trick is to keep it going,  but hope is afoot and I think I have some great times ahead.  After being diagnosed with scleroderma 20 years ago this October, I never thought I’d make it this long.  I do wonder…  Is there some person who approved my lifetime service connected disability getting chewed out in someone’s office because I wasn’t expected to live this long?  Or is this person celebrating his/her retirement somewhere?  I hope they are celebrating, whoever they are.

 

I really should have worn make-up here.

That’s teleangectasia on my face.

Without the help of the Veteran’s Administration, and service connected disability benefits, I would not be alive today.  I would have had to endure ineffective treatment and it’s side effects, without the option to find a better doctor and pay out of pocket sometimes for a valuable second opinion.  I would probably be missing fingers because I would have had to have someone split a 100mg Viagra tablet into fours because Viagra was non-formulary at the time for Raynaud’s Phenomenon, (Yes, I was prescribed 25mg and the VA did try to get me to split up a 100mg.),  but I had doctors and practitioners who went to bat for me.  I do realize just how lucky I am to be here.  I wonder, why can’t everyone have disability benefits that are well above the poverty level, like me?   And don’t tell me it’s because I’m a veteran.  I think that is bullshit.  This is medical care and resources.  If a person is too sick to work, how can we expect that person to live a full life if they are constantly unable to buy medicine or healthy food?  And just because a person is sick and poor, that does not mean they do not deserve to live a full life.  Look, I don’t think we should send everyone on a European vacation, I’m saying wouldn’t it be nice if they could put their energy toward health instead of choosing between medicine and food?  I’m so tired of reading about sick people putting themselves in debt while being denied Social Security benefits and reapplying.  It’s just stupid.  And really it does send a message that if they just deny people enough, they’ll  die eventually.

 

Eliminating discrimination based on existing conditions is a start.

 

We are making progress, but it’s not enough.  I’m still here because I have had resources not available to most scleroderma patients.  Medication, though accessible, is still very expensive.  I wouldn’t know that because my medication through the VA is FREE.  Yes, FREE.  Imagine how many people might be feeling better if they had access to care and medicine.  Getting the right treatment based on expense rather that what works, is still the way insurance companies do business- and the VA if you don’t fight for it- but that’s a whole other post.

 

I really have no idea what to do about all that.  Is it just me, or did that go on a bit?   It’s your world.  I’m just living it it.