Scleroderma and the Agony of the Feet.

The Scleroderma gift with purchase includes a free facelift, and fat removal- on our feet.

Circulation, pain relief, and proper foot maintenance are key for anyone with feet, not just patients with scleroderma. I have been dying to write a post with this title for years and today I was inspired by a fellow patient who posited a question about her own feet.

My feet began to lose its fat pads in 1999 and around the early 00s, I finally figured out what I could do about it.

In 1999, there was very little on the internet about scleroderma except for worst-case scenarios. The doctors I did have would not have recommendations for long term care and maintenance of anything because they were not used to seeing patients remain active. In fact, in most cases, I was encouraged to remain sedentary but get active again and when I remained active and they saw my condition improve because of my activity, until scleroderma began to damage my feet.

I had given up walking when the fat pads in my feet had deteriorated. I had been seeing a podiatrist at the VA Hospital in Loma Linda, Ca. I’d been seeing them a while and was really not sure why, until this happened. My podiatrist had me fitted with insoles, and I went from using a wheelchair at Disneyland to running through Disneyland. Their aversion to surgery with scleroderma worked to my advantage.

At first, they tried shoes, but the shoes never fit right. So I got shoes I liked and got insoles. The insoles, coupled with gentle exercises like yoga, pedicures, massage, and a high protein diet, work together to keep me mobile.

Pedicures are not vanity. The care and maintenance of our feet is healthcare. An ingrown toenail or corn can take anyone out for weeks at a time. The diligent maintence with pedicrues and visits to my podiatrist are why I still have all ten of my toes. Thank you for coming to my Ted Talk.

I wear flip flops in the shower and around the house. I have a protein shake in the morning for breakfast every day.  Yes, sometimes, I have had a protein shake first thing and then pancakes with my son about an hour later- there’s always room for pancakes, and they are freakin’ delicious.

I was diagnosed in 1994, and now I am getting my MFA in film and TV. The loss of fat pads was a huge setback for me. It’s painful and it sucks and can trigger my depression and major anxiety disorder. My secret to managing pain is Tylenol with Klonopin. It used to be a Vicodin every morning- and it helped most, but it’s nearly impossible to get enough Vicodin to keep around leftovers from a prescription. just in case. but it’s not the end of my activity. I recently discovered brushing my skin, and I brush my feet twice a day.


For those new to podiatry, find a good podiatrist in your area that is all about surgery as a last resort. I have had no surgery or treatments. But age-related foot surgery may happen in the next 10 years for me.

My best shoe recommendations are Merrel and uggs. I wear running shoes with formal gowns. It took some time for me to build my confidence. My brother gave me the best advice. “Remind yourself, I make this look good.”


Never underestimate cowgirl boots. You can get an insole in any shoe. I have tried them in heels- one-inch heels. It’s good for photos, but not longer than 20 minutes at a time for me. I do miss my heels, but it has taught me confidence is sexy.

And when I feel like I don’t got this, I go down rabbit holes like 1980s music videos. By the way: You Look Marvelous.

A written description about the hashtag for this blog, #LaughAtWhatScaresYou

F*&# You and Your Formulary​

"Stupidity may not be right for you. Please check with my doctor in black letters with a notebook paper background and a pen resting below the signature of The Mighty Turtle.

This is exactly what goes through my head every time a pharmacy tells me formulary prevents me access to the treatment that works best. I’ve been doing this through the VA and private healthcare for over twenty-five years. Unfamiliar with Veterans Healthcare? Veterans Healthcare is like Kaiser Permanente but without the multiple paid TV, internet and radio commercials talking about how great they are.

If Veterans Healthcare had the PR and advertising budget as Kaiser Permanente and United Healthcare, we’d know just as much about VA Healthcare as we do the Kardashians.
End rant.


A Disabled Ableist Walks into a Bar

I’ve been living with this for over 25 years. I’m not dead yet. I’m in denial scleroderma will kill me and I think that works for me. I take my meds, I read up on breakthroughs and I love going to patient conferences. I avoid support groups like the plague.

I’m working on a web series called Scleroderma in 60 Seconds. I’m still editing it, sort of- I have editing to do for school so my web series will have to wait until April.

I’ve been kind of laying low on social media. I was blocked by a disability advocate. It was a person in a wheelchair and I probably deserved it. I just can’t get into the ableist argument. Yes, I do think that disabled actors should be used more, but only if they are the best actor. It’s how I feel about the portrayal of veterans. I think a veteran should be chosen for the part, but only if that person is the best actor.

Of course, I agree that people who are not disabled can’t know what it’s like to be disabled, no more than someone who is a not a veteran knows what it’s like to be in the military. By that logic, no one should be an assassin, unless they are really an assassin.

An assassin is probably not the best example. I mean there are no assassins out there trying to raise awareness about assassins. Are there?

How about writers? Should I only stick to writing parts for people with scleroderma and contractured hands? That makes more sense than assassins.

Can I write about different cultures if I study them and respectfully tell their story and consulting with people of that culture? I certainly cannot portray a race using blackface. There is something there, but I can’t equate it to blackface because there was no equivalent to minstrel shows and slavery with disabilities.

Am I a self-hating ableist? I want my disabilities to have a cure I and want to work around them. I make accommodations whenever I can. Yet I read disabled activists’ work and just wanting to have the use of my hands back is a mortal sin to some disabled activists.

I search for commonalities, sometimes I ask questions but I would like to have conversations about disabilities with able-bodied people without calling them names.

Maybe I would have more readers if I called everyone an ableist. When I tell people about what I have if I need accommodations they are usually friendly, but if I called ahead maybe they would be more likely to be rude. It helps that I don’t need a ramp to get in the door. And because usually because I can get in the door and I don’t call ahead.

Maybe I’d have more readers if I attended support groups. I’ve been writing a blog for 10 years trying to raise awareness of scleroderma. Support groups are about acceptance and I prefer denial. I would do stuff with other patients like see movies, have dinner, hiking anything but sit around and talk about being sick. I do that enough at my doctors’ offices.

Accommodations that work for others, don’t work for me. I kind of have to compromise. In the case where I was blocked, I disagreed that there should be toilet paper rolls available at every height level because lining the walls at every height level in every stall doesn’t seem practical. What if one of the rolls run out? Wouldn’t that make less room in the stall? Doesn’t a smaller stall make it even less accessible?

Able-bodied people leave nasty notes on cars of people who use handicapped spots because that person’s not in a wheel chair. People in wheelchairs write about people not in wheelchairs using disabled stalls. If I use a disabled bathroom stall because I injure myself in smaller stalls because I cannot bend my elbows enough, do I have to explain to everyone when I walk out why I used the disabled stall?

End rant.

Scleroderma and Dental Health

I have been taking time off from stand-up comedy to take care of my dental health. Tomorrow I will be undergoing the third in a series of four surgeries to rebuild my gum tissue destroyed by scleroderma.

If you are a newly diagnosed patient, try to stay calm while reading. What happened to me, may not happen to you. I was diagnosed twenty two years ago. Many of the damage done, might have been prevented by new treatments available today.

Scleroderma patients need their dental health monitored closely. Sure, it’s important for everyone, but because our skin tightens around our face, our mouths may have difficulty closing and clearing chewed food because our cheeks don’t expand to get that saliva moving while we chew. But wait… There’s more!

Raynaud’s effects the blood flow to gums and teeth. Gums can become receded, food gets caught in spaces created by the gum recession, teeth come loose because ligaments are effected, the tongue can become stiff and make chewing and speaking difficult, hygiene can be tough because of reduced range of motion in hands and if you run into complications that nearly kill you, dental problems become secondary and it’s about keeping the patient alive, so after surviving there’s some work to do. Did I mention that salivary glands don’t work properly or because of inability to close one’s mouth, teeth can shatter?

Now that’s a list! In my case, I have gum recession. My gums have receded so much, I can use a small pipe cleaner to floss my teeth below the gumline. Most scleroderma patients have frequent cavities and root canals because one tiny piece of food that is missed can cause great big problems.

I brush my teeth after every meal. If I see blood in the toothpaste spit, I know something is wedged in there and I get it out. Early in my diagnosis, my ex-boyfriend’s sister was a hygienist and she showed me how to brush my gums. I am not afraid to brush where it hurts. In fact, if I get a toothache, I get my kid’s sized toothbrush and a dental implement and remove the foreign object. When a piece of food is lodged beneath my teeth, the gums react and a pocket forms around the object. So, I gently work on the pocket until it’s broken and carefully remove the popcorn kernel or chowmein noodle or whatever. Once it’s removed, the pain is gone. Maybe it’s home surgery. Maybe I’m sharing too much. My point is, my dental hygiene is excellent when I go to the dentist.

So, after years of having extra “closet” space between my teeth below the gumline and small repairs to the most receded teeth, donor tissue will be used on the entire bottom of my teeth. After working with many periodontists over the past twenty years, I am getting my gums rebuilt.

It took a lot of work to keep my teeth healthy. Not to mention, I am not genetically predisposed to cavities. Sometimes it’s not poor hygene that causes cavities. Some folks have naturally week enamel. Sealants are available, but are expensive if you’re not 100% service connected like I am. It’s free for me. Dental care is not free to all veterans. Only those who are 100% service connected. I would not be able to afford the preventative measures in addition to the repair and restoration I’m undergoing. (Did I mention in my opinion, $$=healthcare and mobility? If I did not have Veterans healthcare, I would be long dead, but that’s a whole other post.)

Tomorrow is a big day for me. I’ll talk about it when I’m healed. Until then, read about this study. Oral and periodontal manifestations associated with systemic sclerosis.

If you’re newly diagnosed, or concerned about the future of your periodontal health, ask your dentist for a referral to a periodontist to establish a baseline of your teeth before, or in early stages of recession. Don’t be afraid to ask about dental plans or discounts. Periodontists have bills to pay just like we do, but if they can, professionals will cut you a break. Talk to local periodontal schools, but be sure to ask for students with a lot of experience. Or, see if an instructor would be willing to use you as a teaching subject. I feel like this should sound weird, but scleroderma is rare. If we can’t afford care for our teeth, because for some dumb reason, teeth are considered “cosmetic”. I call b*llsh*t because our teeth are the entrance to our digestive system. Good saliva ability and proper, thorough chewing helps us better digest our food and prevent esophageal injury and choking. (Teeth are cosmetic, my a**!)

NOTE: My mouth has difficulty opening wide enough. My periodontist understands this and does tricks I don’t know how to describe. It is painful, but it is less painful if I can stay relaxed. The site of the surgery is numb, but tugging and moving my mouth to give access is what’s painful. Here is what helps: Meditation, deep breathing and music in my earbuds. I have about 10 years experience with meditation. Prayer can also be used, because saying words and focusing on them is a way to meditate. I listen to music that is calming and I am very familiar to me, so my mind can follow the words and music. When my mouth is tugged painfully, I do deep breathing and center myself. Long story short: Learning relaxation techniques and practicing them, paid off for me.

Was that a blog entry, or rant filled with lots of information? I’ll never tell, because I have no idea.

Fry of Futurama holding m

Ever feel so broke, even payment arrangements are denied?

Scleroderma Awareness Month 2016

Scleroderma awareness is not all rubber bracelets and t-shirts. It’s about sharing and teaching others about the hard work being done for patients, providers and caregivers

Wednesday is the start of #scleroderma awareness month. There are different types of scleroderma; limited, morphea and diffuse. I refer to diffuse as “The Fast and The Furious” type, because most medical providers have little experience with scleroderma, many patients with diffuse scleroderma find out later in the disease process; which means it’s more likely to be fatal, faster. Kids can get scleroderma as well, forcing them into aggressive treatment on their young bodies. Awareness for the public is a great idea, in addition to the public, medical professionals need diagnostic training. The more physicians and nurses who recognize symptoms and signs, the better the chance of survival for scleroderma patients.

Thirty years ago, scleroderma was a death sentence. Even my diagnosis in 1994, most physicians I worked with did not believe I would live to see my 30th birthday. Here I am in my mid-forties. Make no mistake, scleroderma is a progressive, degenerative disease that hardens connective tissue, which is everywhere. I have fought to stay here by lifesaving treatments and hunkering down to survive the worst. I am only here because of the research done to treat the progression of scleroderma. Donate to research, provider education and patient education and support. You will save lives.

Unfortunately, I will be unable to attend the Scleroderma Foundation, Southern California Chapter walk this upcoming weekend. I will be working on a movie set, thanks to the hard work of those who work to improve lives of all patients living with a progressive degenerative disease. Life didn’t turn out how I planned, but life is good. (Does anyone’s life ever turn out exactly as planned?)

My secret is not a good attitude. (By the way, I hate that poster that the only disability is a bad attitude. It’s fluffy bullshit that makes people who aren’t disabled, feel better. See, my attitude is actually quite bitchy.) The number one reason why I am able to thrive, is because I got treatment for my depression. The chemicals in my brain, actually changed because of my depression. Depression is an unseen side effect of scleroderma. I learned to grieve for my losses and find purpose in my life. Not like some lofty help-the-planet kind of purpose, but reasons I want to be here. I don’t want to be a poster child for scleroderma. I did at one time, but now, no. I want to be known as a mom, sister, writer, comedian and dog love who happened to have scleroderma. I am not my scleroderma. No one is their scleroderma. >(Click to read about my experience with depression.)

    Please visit my blog page, The Mighty Turtle. I was diagnosed back in 1994. I began blogging in 2009. I am currently in a screenwriting mentor program, a stand-up comedian and soon, producer. Life is not over after a scleroderma diagnosis. Research is delaying death for many, but we have much more to do to help patients live with the disabilities caused by scleroderma as well as stop scleroderma from killing those who can’t stop it.

Brave Is Beautiful

Last night I had the honor of attending the launch party for Valor Hairspray at Pearls Rooftop on Sunset. Here, is Gina Elise, founder of Pin-Ups For Vets with Beauty & Pin-Ups founder. Gina’s photo is on the bottle and 10% of all sales of Valor, go to Pin-Ups For Vets, a non-profit organization supporting America’s hospitalized veterans. As someone who spent 45 days in a long term care unit, I know the need for support of hospitalized veterans. Many of the veterans I met while there were permanent residents and rarely have visitors. And by rarely, I mean; never have visitors. Pin-Ups for Vets volunteers visit hospitalized veterans. Volunteers are a mix of civilians, active duty and veterans. They sit down, visit, and get to know hospitalized veterans. Four of the eight women you can see in this photo are veterans, the two women on the viewer’s left are active duty military who traveled from San Diego for the launch party.

I have met so many wonderful women with Pin-Ups for Vets. Those of you who know me, know that I’m very self conscious of my hands, and the way #scleroderma has changed my face. I’m so self conscious, I try to hide myself in public, contradicting my own goals of educating the public about scleroderma. (The Mighty Turtle) I rarely go sleeveless and shy away from photos. (I’m in the black and red polka dots on your far right – you can’t see my face. See what I did there?) The fun of learning Pin-Up make-up and fashion, has been slowly luring me out of my shell.

Since the birth of my son, twelve years ago, I have been trying to take more pictures for him, but I do it as little as possible and I rarely share them. Pin-Ups for Vets is made up of men and women who have made Brave Is Beautiful a reality to me. I can count on them for encouragement and inspiration. There is something special about getting ready for events and pin-up fashion that has encouraged me like nothing else has done before, and I’m learning how to smile again for the camera. Valor Launch

Keep an eye out for more adventures and like Pin-Ups For Vets page on Facebook, and their touring members, Pin-Ups on Tour. Pin-ups on tour will be embarking on a tour to entertain with shows that embody the 1940’s cantina atmosphere of World War II, and visit veterans in hospitals around the country

VA Secretary’s Comparison to Disneyland Is A Gift

And we’ll squander this gift on just the statement and not the ongoing problem with veterans care and benefits.

Take a look around you. (I will too, we’re in this together) How many veterans do we see? How do we know that person we see living on the street is not a veteran. How do we know that woman or man in front of us at the grocery store using her EBT card, is not a veteran?

Of course we Americans will say we support our veterans. How many of us give our time to visit veterans in the long term stay ward of the VA hospital? I don’t. Some of us do visit during the Christmas season, so we can click on our Facebook profile from 2013 and say: Look at this veteran I visited in the long-term ward of the veterans hospital. AND it’s a girl veteran. (True story.) I’m not talking about people who actually visit veterans and stay in the room long enough to have a meaningful conversation.

My point is, caring for The American Veteran is an idea, or wish by the American people and that’s about it. Not because we are all a**holes, but because maybe we are working hard to make ends meet and taking care of our families. The only time some of us may have to see the news, is the 30 minutes before Colbert and can barely stay awake for that.

I’m glad the VA secretary compared veterans wait times to waiting in line at Disneyland. Thank you, Mr. Secretary for a great conversation starter. Of course, journalists, pundits and viewers will squander this wonderful opportunity to discuss what’s going on with the Veterans Healthcare System, and argue over the comparison. Here is where I depart from we. If you’re focusing on the comparison only, you are part of the problem. There is something to his remark, and it can be an opportunity to do something about it. Look at the voting records of our presidential and congressional candidates. Use the anger or offense you may feel to take a look at the problem. We can keep changing the secretary and nothing will change, except the name that follows the word, secretary. I have been visiting Disneyland for over forty years and in the VA Healthcare System for twenty. This is a conversation. So, what can the we do about this besides buy more car magnets and complain?

Glenn Frey’s Death: Risk vs Benefits of Medication

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.

I’m Not Here to Inspire You

Disability and illness are cruel, but having them does not make an individual special. This may not be a popular opinion, but it is mine. Since I have both disabilities and chronic illnesses, I will take the floor.

I have been called brave, a warrior, or described as “suffering”. I have had great difficulty helping people understand why these terms are used a little fast and loose for my taste.

I’m told often how courageous and brave people think I am. Really? I’m not brave because I live with an illness and disabilities. What’s the alternative? I’ve said it in prior posts that living with obstacles doesn’t make me brave; it just means I’m not dead. Being not dead is certainly a reason to celebrate, but it doesn’t make me brave. I’ve had conversations with people who say to me, “I was having a bad day, until I thought of you. I know that no matter how bad my day is, it couldn’t be as bad as yours. I have no reason to complain, your life sucks compared to mine. I mean really, I don’t know how you get out of bed every morning to face the day. I would probably kill myself if I were you.” (Every one of those statements have been said to me.)

Everyone should be able to have a bad day, and not feel guilty about it. On the surface, maybe “my life is not as bad as yours”, may sound like a compliment, or that your validating their struggle. No. That’s like saying, “My life is okay, but yours- it’s really bad. Oh my God, you have a terrible life. I am so happy not to be you. I feel so much better now, because my life could be so much worse!”

Having a disability or illness does not mean that my life sucks. Look, I would never say my illness is a gift. That’s stupid. But yes, my life is good. I am rare because I receive veterans disability benefits in addition to ordinary disability benefits. To be quite honest, I don’t know if I would have lived so long without it. Back before it was against the law to discriminate against pre-existing conditions, (and even now) patients who need specialized doctors outside their network of care will die prematurely because their budget doesn’t afford them the luxury to pay the out of pocket network co-pay, and/or non-formulary medication. The United State citizens fear terrorist attacks more than people dying from lack of needed specialized care and prevention. You know what’s frightening? The comparison of Americans who have died from terrorist attacks vs citizens dying due to lack of medical care. Citizens of our country think it’s okay to call people on disability lazy, and denying coverage because some a**hole commits fraud. And yes, there are things in place that prevent a disabled person from supplementing their income. Because if they do, and it gets over between $500-$800, they loose their benefits and suddenly it’s no longer supplemental. So when illnesses flare and they don’t have the resources to pay co-pays for specialists and medication. Suddenly, they’re worrying about rent and food. And don’t get me started on pain management. It has nothing to do with pain and everything to do with preventing addiction. We force people to wait months at a time to see pain specialists because doctors have restricted abilities to prescribe pain medication. Yes, addiction has to be in the equation somehow, but thanks to a generation of medical breakthroughs, but lack of access to treatment due to income made handing out pain medication like M&Ms a preferred treatment. I once paid $5.00 for a prescription for percocet and $50 for the antibiotic to cure the problem. If I had to choose between food for my kid or medication until payday, I’d hang in there with the Vicodin until payday. Now, the stigma of pain medication has become so bad, people will walk around in excruciating pain, than risk being labeled an addict. This is why people listen to Jenny McCarty and Food Babes of the world. They promise them health because in the past, treatment was not available.

We are so dumb as a species.

Wait, what were we talking about?

Using terms like brave, etc… People have asked me how I’m doing, and instead of embracing the exciting things I share with them, I will get, “Oh Karen, you are so brave. You don’t need to be brave for me. How do you really feel?”

I have been complimented on my strength to get out of bed and dress myself. I’ve been give credit for just showing up. People show up, every damn day.

I hate being called a scleroderma warrior. I am not at war with my body. I’m trying to make it strong and healthy. I want the organs of my body to work together so I can go out and do things. I think that makes me a negotiator, not a warrior. My body is not at war. My body is negotiating peace with factions who disagree with one another. It takes time, patience and work, but we all do it. As we age, we do things to prevent high blood pressure and diabetes. We stop eating fiend foods because our metabolism slows down. The things I do to stay healthy, are the same as anyone else. Sure, some the medications are different, but the intent is the same: We’re negotiating for more time on earth. We’re giving in to concessions like taking medication and avoiding chili dogs, to live longer. I don’t know about you guys, but I’m 45 and I am working to get at least another 50 years.

When people ask how I’m doing, I will tell them I feel good, and they won’t believe me. They’ll reply with statements like: ‘Oh you must really suffer”; “I know you’re suffering”. Are they listening? No.

I could say, “Today, I won the lottery, had sex with Chris Hemsworth and instead of breaking up, my boyfriend congratulated me.” And I bet I would still get, “Oh, you are so brave. I just don’t know how you do it.”

I have shared a video in this post of a TED Talk featuring Stella Young. She nails it. Please watch. She is far more entertaining than this post.