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

 

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

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

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

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

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

Dear Family and Friends,

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

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

XXOO

Karen

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Download Movie

 

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

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

 

I Hate The Documentary, Project Scleroderma: Beneath The Surface

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You can find Project Scleroderma on Facebook,    Twitter  Website

To learn more about scleroderma:

NIHS: Facts about scleroderma.

Scleroderma Research Foundation, a partner of The Scleroderma Project

Scleroderma Foundation

Federation of European Scleroderma Associations Facebook  Website

Scleroderma Care Foundation of Trinidad and Tobago

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

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