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.
For more:
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.
Pulmonary fibrosis can exist alone, or as part of an associated condition of a disease like scleroderma, which is the case for me. Parts of my lungs have scarred and become fibrotic. I function well, but without medication like Viagra to help my lungs work effectively, my heart could suffer damage and eventually fail. Another factor that has yet to be determined is whether or not I have pulmonary hypertension. Sure, Viagra may be helping the my lungs, but is it also helping to maintain a stable pressure in my pulmonary artery. I still may have undiagnosed pulmonary hypertension and it must be ruled out. 