This month we have lost entertainment icons. I listened to David Bowie’s album, Ziggy Stardust and the Spiders from Mars while afloat during Desert Storm, Shield and Watch. When I hear songs by The Eagles, I am flooded with memories of my early childhood summers spent on the beaches of southern California. I have many memories tied to music and I could go on, but that’s a whole other post. I’d like to talk about some things popping up in social media and news regarding Glenn Frey’s medications, and speculation of how it may have contributed to the cause of his death.
Patients like me, with chronic illnesses get mountains of advice from well-meaning friends and family encouraging us to walk away from science-based, researched treatment to more natural alternative treatments. alternative None of us were in the room with Glenn Frey and his family when he made treatment decisions, but chances are they carefully weighed the risks versus benefits. Like many patients, he risked illnesses because of a compromised immune system, and the many variables affecting any illness as it comes up.
My reason for writing this post is my concern about alternative treatment advocates, anti-vaxxers and supplement sales people, will use this press as a selling point for their useless products and sometimes dangerous advice. My message with this post is that there will always be someone selling hope. There will always be risk. Hell, the treatment I’ve been on since 2007, lists Lymphoma as a “side effect”. I get my blood work and monitor my health and continue my treatment because it has increased my mobility, stabilized my lung function and I am living well with my scleroderma. I no longer suffer. I have good and bad days like everyone, but suffering is not my way of life.
I urge patients to do their research. There is no “Google University”, and that many blogs quote other blogs as “proof” of their opinions and suggestions. Don’t listen to the Jenny McCarthys, because they are delusional self-important and ignorant.
Patients have to realistically weight risks versus benefits. Complications from illnesses like scleroderma, sarcoidosis or rheumatoid arthritis can hit us like a freight train, and if we’re not killed, we find ways to jump on and ride out the worst.
Yes. Scleroderma does do ugly things to beautiful people, and me, too.
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?
Here is the response I received and a copy of my letter:
Your Letter to the President and Congress
Karen, thanks for taking action on behalf of Petition2Congress. Your messages are on the way.
An individual copy of your letter will be sent to each official:
August 7, 2013
Dear President Obama,
Dear Representative Lowenthal,
Dear Senator Boxer,
Dear Senator Feinstein,
I was diagnosed with scleroderma at age 23 by the Veteran’s Hospital in Madison Wisconsin after having symptoms in the Navy. I am still here because I had access to healthcare and treatment I often had to fight a male-centric healthcare system. The VA has improved the treatment f female veterans exponentially. However, there are many patients who are not getting the proper diagnosis and treatment I was able to receive. This need to change. It starts with research, and we have lots of work to do. You will be hearing more from me at TheMightyTurtle.com & a page I started to introduce the possibility of surviving scleroderma: Unstoppable Me: https://www.facebook.com/pages/Unstoppable-Me-Karen-Vasquez/217918321693555
Loma Linda VA is overcrowded, like many VA’s across the country. I recently relocated to be closer to a VA that could help me manage my care in Long Beach, California. Not every patient has the luxury to be able to move where there is not only a great medical facility, but family and friends nearby.
One thing I have learned and has been found in research, is that many diseases have similar symptoms and research of other diseases has led to effective treatment of different diseases. For example, I also have sarcoidosis. I was diagnosed in 2007 after fighting doctors to do further tests to determine my symptoms were not just scleroderma. After my diagnosis of sarcoidosis, I was prescribed Remicade, normally a treatment for rheumatoid arthritis. My symptoms are now under control and I appear to be in remission with medication. I also take viagra 4 times a day, which was originally designed for infants with pulmonary arterial hypertension. I was the very first female at the Loma Linda VA to be dispensed Viagra. Getting Viagra did not come without a fight and months of waiting. Many patients do not have time to wait for approval and are dying as a result.
I urge you help. People are dying simply because they lack money and resources.
And now, the formatted letter:
Congress, please support this Petition by directing the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma, development and evaluation of new treatments, research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud’s phenomenon, and Sjögren’s syndrome. Establishment of family and “childhood-onset” patient registries. Support for the training of new investigators. Direct the Centers for Disease Control and Prevention to establish a scleroderma public awareness campaign highlighting disease symptoms, prevalence, related conditions, and the importance of early diagnosis.
This Petition is very important to patients and family members living with Scleroderma. Thank you in advance for your consideration of this Petition.
Ms. Karen Vasquez
Long Beach, Ca
You can still also have your letters printed and hand-delivered to each official for just $3 each.
Thanks again for taking action, and keep this email for your records.
Also, be sure to visit http://www.petition2congress.com/ for more important action items.
Even crazier, we are going to do this without spending a single cent.
Scleroderma will trend on Twitter world-wide, June 3, 2013, not by tweeting the same thing over and over. We will do it with tweets, retweets and modified tweets. This is the campaign I am proposing. This is not my campaign. This is OUR campaign. This is a world-wide campaign. When I refer to us, I mean we, Planet Earth.
The trend will be #scleroderma, but there are many associated conditions I am asking that we all unite to encourage patients to reach outside the parameters of their diagnosis for information.
For example: Lets say you are diagnosed with Lupus. You find that you are short of breath and your fingers are getting numb for no reason. There may be a secondary diagnosis that could lead to effective treatment, but maybe you live in an area and don’t have access to specialists familiar with associated conditions. Symptoms are written off as just “part of your Lupus”, but there may be treatment used for other conditions that may help these symptoms. What I am trying to say is that we need to change treatment of these diseases to follow the route of progression of symptoms, not the parameters that confine us by diagnosis (For God’s same someone please comment and let me know if this makes sense. I’m working without a net here. Thanks!)
You’ve read this far, so I’m going to assume that you are in. If not, allow me to apply the “Peter Griffin Persuasion” :
Come on! Come On!
Okay, good. Moving on…
This campaign will have a consistent message of awareness, education and humor. Here are suggested ideas:
1. Facts about scleroderma.
2. Funny anecdotes of observations by those touched by scleroderma.
3. Memorial tweets always encouraged. Share a happy memory of someone you lost to scleroderma.
4. Pictures from walks or fundraisers.
5. Retweets and Modified Tweets of facts, information or funny stories.
6. Be positive.
Avoid posts like: “Scleroderma sucks, it kills people”, or “Scleroderma is a slow, painful disfiguring death.” We already know this. Let’s get the facts out in a positive way. There is no argument those quotes are true, but by staying positive, we inspire and educate. Yes, scleroderma is scary, but sceroderma patients are not alone. Let’s not teach with fear.
7. Do not tweet to celebrities or anyone in a spam-like manner. (edited 5/4/13)
If you have a celebrity you hope will participate, try a friendly email and ask them. (You know, If I could get a celebrity to comment on this, that would be awesome.) Celebrities are people who receive hundreds of tweets a day asking for help with causes. A friendly email is a more personal way to ask. An email will put a face on your cause. And if you receive no response, do not shame the celebrity. Please. I know many people will tweet friendly, but I want to just set some guidelines. I have seen some weird stuff on Twitter.
8. Don’t tweet the same tweet over and over.
Yes, getting Scleroderma to trend worldwide is all about numbers, but the purpose of getting scleroderma to trend is raising awareness and education. Let’s make every tweet count. Yes, numbers help, but getting just one person to read our tweet helps educate about scleroderma. In short: Numbers good. Education better.
DOING THIS AT NO COST… TO ANYONE
June is Scleroderma Awareness Month. This Tweeting Event on June 3 is to get everyone in on it. non-profits need to compete for funds. It’s not a bad thing, it just is. Because non-profits can’t always work with other non-profits to share information having this open event benefitting no one organization makes everyone “Free to move about.”
Shall we give it a Name?
Twitter is like a giant sandbox where the whole world is welcome to play. So, Let’s Play in the Sandbox for Scleroderma. It doesn’t matter what your diagnosis is. Breakthroughs in research benefit all chronic illnesses, deadly diseases and ways of caregiving. After June 4, 2013 if others find this model adaptable to their cause, I hope they will use it. This is a project does not belong to The Mighty Turtle. It is for us all because we are in this together, and together we are stronger.
You don’t have to join to participate, but if you wish join the event, here it is on Facebook, or ask to be added to the group Let’s Play! on Twitter.
So, If you skipped to the end:
Tweet any time between 12am, & 11:59 June 3, 2013 Pacific time. Tweet as often or as little as you like, something relevant with #scleroderma in it. Let’s Play in The Sandbox For Scleroderma and get #Scleroderma to trend WORLD WIDE on Twitter. I will be posting tweets about scleroderma every 10 minutes- maybe faster depending on if I can stay out of “Twitter Jail”. RT what I tweet or tweet your own story, picture or whatever with the hashtag #scleroderma. If you don’t tweet you can be a great help by sharing this on FB before and the day of the event.
Remember: Do NOT tweet celebrities and keep it positive. No money will be spent to advertise this event. Period. We can do this with the power of us. Let’s set the trend June 3, 2012.
So, after further review of the budget, I had to stop maid service. It takes e a very long time to clean, but I decided if I tackle one cleaning job a day, I can stay on top of things. Yes, it is tough and time consuming, but only if I do it all in one day. I can’t believe I didn’t think of this sooner. I could have saved so much money! So today, I took on my first task; my closet and my bathroom.
I used to sit and dread cleaning. Not today. Just knowing I was only doing my closet and bathroom made my objective possible. I did it. I still felt energized, so I moved on to the laundry, but I didn’t get too involved. See, my old behavior would have been to keep going until I hurt myself or collapsed into a sweaty heap on my bed at the end of doing all my chores at once. That sounds like not such a bad thing, but that kind of behavior would result in the following day being immobile, in pain and grumpy. So, maybe my other bathroom is a mess, but that can wait until tomorrow. I can spend an hour or two, take my time and have the rest of the day to have fun.
Yes, I can do this. It will result in more pedicures and possibly a vacation. A real vacation, not a trip to a relative’s house. I mean a real vacation. Yes, I want to stay somewhere I can swim to the bar. Just because I can’t drink doesn’t mean I should give up on my dream.
Maybe not exactly this house sitting gig, but it does get me in the mood. Click here to enjoy Someplace tropical where I have to swim to the bar, with fewer banana hammocks and more board shorts.
Now that The Mighty Turtle has a renovated home, I would like to explain the goals and purpose of this website. Some of you remember it from back in the day as Scleroderma, Sarcoidosis and Box Wine. I still have the Facebook Page of the same name, but changed the blog name so it would be easier to remember. I picked “turtle” because turtles out lived the dinosaurs by adapting. They moved to the sea, learned that jellyfish are delicious, and know how to cruise The Gulf Stream like a champ on loose bed of kelp. The only thing anyone remembers from Scleroderma, Sarcoidosis and Box Wine is the “Box Wine” part. By the way, I stole the “Box Wine” idea after listening to hours of listening to The Stephanie Miller Show Podcast driving to and doctor’s appointments between LA, Riverside and home.
Overall it is a blog, but there are resources and a store as well as a useful resource about life as a member of the human race living with some chronic illnesses, being a parent and 100% service connected female veteran.
My diagnoses are Scleroderma, Sarcoidosis, Rheumatoid Arthritis, Depression and complicated damage like pulmonary fibrosis, barrat’s espohagus and Joe my God, the list ends here.
I write to raise awareness and hope to save others time by sharing about how I spun my own wheels. In addition to written posts, I have a video series called, Scleroderma on the Fly. This series consists of facts and helpful tips about scleroderma. Each video after Episode 1 will be two minutes or less and will cover only one topic. This is to provide a quick go to source thats easy to understand and easy to repeat. I want those who watch to walk away from each episode knowing the topic.
Feedback is always welcome. I especially need to know if there is something I talk about that does not translate or you as the reader or viewer need further explanation. I am my own editor. Of course I enjoy positive feedback, but critical feedback will only help me become a better messenger. If it’s the information I give is ever confusing, let me have it!
I support research and fundraising organizations I know about and find credible by sharing their information, donor pages and more. I am not connected to the organizations I endorse.
I write about current events as well as medical experience. There is more to life than our diagnoses. It took years of therapy for me to realize I was not my Scleroderma. I want to share that message. Though my opinions will be shared, the only thing we need to agree is that diseases like Scleroderma and Sarcoidosis need a cure and patients need better treatment while waiting for one. (I’m a little tire of waiting. Did someone just start playing Muzak?)
Thank you for taking the time to read about this website/blog. I hope you will find it a useful resource and share posts when you feel they are share-worthy. It doesn’t matter your diagnosis and this page is not just for patients. It is for patients and those who love and care about them. Coping is tough as both a patient and loved one. The greatest way to torture a person is to cause suffering to those they love the most. Not sure? Ask a parent. Diseases have symptoms in common. Coping is universal because we are in this together and we can help each other by learning from one another.
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:
Many people benefit from weekly support groups. Many have to drive hours just to find one near them. It’s hard to be a patient with one or more hard to pronounce, never been heard of diseases. It’s very easy to feel isolated.
I’m not sure when I discovered Inspire.com but I am sure it is a place online where I feel so not so alone. It helped me open up about my own experiences and help others when I could. The site is well named, because it did and still does inspire me.
One of the many things I like about the site is you are able to vent to your fellow patients and not have it publicly shared without your permission. It’s a community with some privacy.
Do you think you are the only one with your rare chronic or terminal illness? Check out their search and find others. You may be surprised.
This is who can benefit from reaching out at Inspire.com and can find a positive experience.
1. If you have a chronic or terminal illness.
2. Know someone with a chronic or terminal illness
3. Are a caregiver of someone with a chronic illness.
But you will not know the benefits if you don’t take the first step by reaching out.
I can go on about my experiences, but like any online group, I prefer to follow the rules and keep my interactions within the group. This is a short post, but Inspire.com speaks for itself. Please visit Inspire.com and see for yourself. Take the first step and reach out.