So I’m on Periscope. I couldn’t figure out what to broadcast. I don’t want to tell you guys everything. Then, while I was scrolling through scleroderma posts.I had an idea So many patients are in pain, many are waiting for lung transplans all are waiting for the ever elusive cure. It truly is a cruel disease.
Patients with diseases like scleroderma, sarcoidosis, lupus and more, don’t look sick until thry are in a hospital gasping for air, or taking medication to reduce the swelling in our feet when our hearts are working harder and getting damaged from too many symptoms associated with these autoimmune diseases. Then, there’s the lack of awareness: The sclero-what?, the mistaken for the skin condition and my all time favorite and yours; it’s all in your head.
Don’t get me started on October and “Pinking It Up.” The pink all over the TV and social media is enough to make a scleroderma patient angry. It’s not because breast cancer awareness shouldn’t be done, or those walks that encourage those fighting cancer and those who lost their loves to cancer: Scleroderma patients have far few treatment choices and as someone who has experienced this for twenty years, get tired of seeing friends and family whooping it up about breast cancer, but are MIA for our scleroderma walks. Look, scleroderma is not the only rare disease, and there are thousands of patients sitting at home in pain or whatever, feeling pretty left out,.
I’ve said it before and I will say it again: Scleroderma is not sexy. And information about breast cancer to those who haven’t known someone personally, well lot’s of people think breast cancer is nothing but chemo, and a new set of tits. It’s not, But thanks to marketing strategies by non-profit research organizations who can afford great marketing, get the coverage to get the money to advocate for patients and research. Is that wrong? No, it just is. Not right, not wrong, just: Is.
Well, I wish I had a soloution. I wish I could tell you that if we work together, we can get some coverage, but I’ve done that unsuccesfully already. I’m tired of talking about how bad scleroderma is. I’m reading this and realize how big an a**home I may sound like, but we get enough smoke blown up our a**. I’m no cheerleader when it somes to awareness. I no longer wear teal, and I don’t attend support groups. I go to doctor appointments, spend time in hospitals and the last thing I want to do is drive an hour or so, so I can talk about scleroderma. I choose to write about it and share. Maybe that’s not enough for some, but it’s all I choose do. I’ve spent far too much time in therapy fatiguing out what works for me to change.
Long story short: I’m going to share some stuff on Periscope. I can broadcast from anywhere and it’s only up 24 hours, so I don’t have to worry about embarrassing footage archived on the internet. (Well, I guess someone could record these video and save them, but really?) Remember when I video blogged? I took all of those down, because they were out dated. Now, I can say something and people can tune in live, free and then it’s gone in 24 hours.
Look, not everything I have to say is important, but my whole point of this painfully long post is, I want to show patients what’s possible. I’m not saying every patient can do what I do. But every patient is strong enough to try what will work for them. We are advised to rest by well-meaning friends and family, but if a doctor tells a scleroderma patient they can move, the scleroderma patient should move. It’s painful, it’s scary and it’;s not for everyone. So if you decide to move, ask your doctor for a referral to physical therapy. They teach exercises that help with pain and mobility. They can’t stop scleroderma from progressing, but maybe they can help keep what does work, working or able to recover. And ask to learn how to fall. I can’t tell you how often I use those falling prevention and techniques when falling. Oh, and follow me on Periscope at @karenOvasquez, even if you can’t move, or aren’t ready, check it out because I love the attention. The thing I missed most when my scleroderma was at it’s worst, was knowing that others survived. As patients with a rare, unknown disease, it’s up to us to blaze a trail of surviving and thriving, for future patients. Until we have a cure, there will always be more patients. Maybe I can give them some hope. I’m going to contribute by posting some exercise stuff on Periscope. We don’t have a multi-billion dollar campaign, but we have each other.