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
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
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.
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.
** 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.
Last year, James Roumeliotis, founder of Bounce to a Cure made it into the Guinness Book Of World Records for The farthest Distance Traveled on a Pogo Stick. Watch this inspiring video with highlights from James’ Journey through Pogopalooza’s Park at The OC Fair in Costa Mesa.
This year, James will attempt to break another world record at Pogopalooza 10 in New York. I will be cheering him on from California and sharing about his progress. Please visit and like Bounce to a Cure’s Facebook page & like and if you are twitter, you can find him @BouncetoaCure. He is using his talent to help scleroderma patients by raising awareness and funds for scleroderma research, for the Scleroderma Research Foundation.
I admire James and I am so honored to be working with him to help spread the word!
Visit his website, Bounce to a Cure. He’s working with some partners you might recognize. I don’t want to give too much away, but you may see a turtle there…
Will it really make a difference if we get scleroderma to trend June 3?
Let’s start with more questions. Because isn’t the journey what it’s all about? No?
Well how about this: It’s what Yoda would do.
Don’t worry, Young Jedi. As always, there is an option to skip to the end. What is most important, is that you get the point. I’ll never know you didn’t read it all. I just want to relay a message and I hope that you share it. (Scroll down to where the “Detour” sign was supposed to be.)
I ask myself this type of question often: Will it really make a difference if I write about scleroderma or any disease?
I don’t have thousands of followers. If you look at my Twitter numbers, I follow more people, than those who follow me. I follow patients, doctors, caregivers, foundations and celebrities, and I don’t care about my numbers. I follow because I hope that someone may see something useful, and pass it on to someone else. Does that make a difference?
If I judged what I do based on my numbers, I would have given up long ago. Let’s face it. I am not market driven. And no matter how much I scramble to cover things like education or travel expenses- or not, depending on what’s in the bank- I can’t see the rationale behind starting a non-profit. Why? So I can create yet another community that probably charges for access to information? No, there are plenty of online communities that provide free access, information, and doing a wonderful job. Plus, I like the idea of being able to have access to these communities. It makes more sense to be a part of what’s going on instead of isolating ideas and people. Plus, if I see a problem with a community, I can support those I know to be legitimate. People are creating empires based on the suffering of others. We can all work together, without membership fees, because most patients can’t afford them, and there are lots of donors who can. We just have to get the word out to let them know we are here.
Who are “we”?
Well, we don’t have a catchy title like “cancer” after our unrecognizable names. Yeah, I said it. We need a cure for cancer. We need access to care for all patients with cancer. We have the capabilities, yet people STILL have to walk, raise money and rally around families to be able to afford treatment of cancer. Does anyone else see the problem with this? The problem is not only cancer. The problem is that patients STILL have to fight and raise money to PAY for cancer treatment. That’s the problem. Cancer has brought the level of care higher for all long term chronic illnesses. Yes, the problem is there is no cure. And an even bigger problem is later detection because of financial reasons. Raise your hand if you know someone who had/has cancer and it was detected at a later stage because of lack of insurance. We all know someone, don’t we? And with all the walks and bracelets that read “BOOBIES”, people are still dying of breast cancer.
Everyone has heard of cancer.
That doesn’t mean we should have to fight each other to get research funds, but we do. We fight with ads, bracelets, publicity, made for TV movies and fundraisers. Let’s face it, it’s working. We have come a long way with cancer research. And research for cancer has led the way for long term care, hospice care and cosmetic surgery. Mastectomies and reconstruction is now covered by insurance. So, if you have insurance, you have a chance. A fighting chance.
Don’t abandon cancer. Just add awareness of other conditions.
Scleroderma has been referred to as a “niche disease”. Not as many people get scleroderma as cancer. On the surface, that’s true, but there are many different types of cancer. Scleroderma is an autoimmune disease. And there are many types of autoimmune diseases. How many? Well, that depends on who you ask. I know of one so-called activist who told me, she has fibromyalgia, but chooses to focus on her lupus because she felt that fibromyalgia wasn’t a “real” disease. But you know what? What if that’s just what I thought she said. What if I just mentioned that to angry up your blood to move you to activism? Or what if I had a non-profit and I said that to move you to donate?
Is it a mind game, or is it real?
When I first had the symptoms of scleroderma, I was told I was an “Hysterical female”. And yes, that was real. Like many patients with a chronic illness with no visible symptoms, I too asked myself: Is this real?
You know what I also wonder? What if I didn’t have veteran’s benefits? If the disease didn’t kill me first, I probably would have died in childbirth. Every day I find a Facebook status about some fighting for their healthcare. That’s right, fighting for care for their own illness.
Not to mention by the time most are diagnosed with a chronic illness, they have lost their income, and are fighting for benefits they paid into because assholes like Rush Limbaugh insist on calling things like Social Security and Medicare, “entitlement programs”. Yes, people like me who have worked since age 15, or raised a family and want to live on the government teet, near poverty. Look, every system has it’s abusers. There is always a way to cheat the system – any system. So, let’s make it so people won’t die because they have to choose between medicine and food. People do it every day. I am not one of them and I am one of the lucky ones. That’s because I am a veteran. If I had been diagnosed with scleroderma before I entered the Navy, I would have been tossed out before boot camp relying on Social Security and living with family. But, you know what, I would have been dead by now.
But Karen, you don’t know you would be dead without veteran’s benefits.
But I do. I have the luxury of walking into any Veteran’s Hospital ER and getting treated for what I have, because I was given 100% service connected disability rating in 1996. Not now, while there is a 2 year backlog. In fact, if I have a grave emergency, I don’t have to go all the way to the nearest veteran’s hospital. I can go into any emergency room and get the care I need and bill the VA. Sure, it’s a mess of paperwork, but if I am in grave danger, it’s covered.
My initial onset of symptoms was numbness and tingling in my hands. I was smoker in my early 20’s, so I would have written it off and cut down, or quit and then just write it off as normal. Who knows how long I would have waited to receive care. You know,I have gone on long enough. My onset of symptoms is for a whole other post.
Okay, if you skipped to the end:
Why make scleroderma trend? Let’s do something that costs NOTHING. No membership fees, no advertising costs or Facebook ads. Let’s do what the Kardashians do, and go viral. Let’s make our voices heard by yelling something most people have never even heard of. Let’s make our voices heard without scary pictures, frightening phrases or braclets that cost $1.00 plus shipping and handling. Let’s break all the rules Monday, June 3rd. If you are at work, you will probably be in front of a computer anyway, or looking to kill some time on your phone. Let’s do this with corny phrases, pictures of walks or those we love who were lost. Use dirty jokes. Someone out there has the creativity to use scleroderma in The Aristocrats, I just know it! Yes, yes I did just link to a Bob Saget Video. I hate it when guys say there are going to call you, then don’t. It’s okay. I ruin The Aristocrats or piss my pants trying to tell it. (A whole other post)
Scleroderma is not fun. Awareness is not fun either. Sure, events around awareness are fun like walks or gatherings, but when I am made acutely aware of scleroderma by a new complication, that is not fun. Or when I am reminded by my curled hands getting injured, or when someone asks, “What happened to your hand?” I look around the room, before I realize I have a large bandage on my hand, because I am so “aware”, I forget there is something wrong.
I’ll add more updates before the big day we make scleroderma trend. Right now, I need you to help me get the message out so we can do this. Please share information about June 3rd. Let’s set the trend, all of Us.
Watch the Bob Saget Video. Watch it to the end. The eye socket chat is worth it. Not for the kids!
Want to make a tax deductible donation? Find a non-profit that does patient education and research, or doesn’t charge a membership fee to access information.
Want to do some shopping? Go to my online store. None of it is tax deductible.
So, maybe you’re skeptical about hearing what Bob Saget has to say about Scleroderma. Maybe you’re thinking, “What could an actor/comedian possibly have to contribute to the scleroderma patient community?”
Well, for one, he lost his sister to the disease. Also, he’s on the Board of Directors at the Scleroderma Research Foundation.
Sure, scleroderma is hard for patients, but what about those who love them? The truth is, it’s just as difficult for them to watch, as it is for us, the patients- to fight. I don’t mean to make the patients’ fight appear less painful or easy. Let’s face it, patients know how painful it is and I am stating the obvious. My point is about the emotional pain of having to sit and helplessly watch someone fight one battle after another for their life. Sometimes, those doing all they can possibly do, have to watch those they love lose their fight. Like many brothers would do, Bob Saget did all he could to help his sister, yet still lost her to Scleroderma. Bob Saget is not alone. He just happens to have a microphone and a camera and is using them to raise awareness and funds for research.
I have one brother and one sister.
I am also a member of an insanely large extended family that requires a map for visitors when they dare come to a party. My family and friends love me very much. Since my diagnosis in 1994, they have been doing everything they can to help me. It is hard for me to watch them feel helpless. I feel loved but I also sense their frustration. As a parent, if my son had to fight a disease, I would cut off any part of my body or gladly take his place to make him well.
Friends and family members need a cure just as much as patients who have scleroderma. Bob Saget is going to help get the message out. Tune in this Thursday at 11AM PDT. I will be watching and listening You’ll need a phone and an internet connection. Visit the Scleroderma Research Foundation’s website to register: