Scleroderma and Graduate School

Karen Vasquez on stage at Flappers Comedy Club holding a microphone in her left hand.  Her hands are visibly damaged by scleroderma.
I’m still here.

Scleroderma is a progressive degenerative autoimmune condition. Survival rates are unpredictable. There are many who don’t make it past the five-year mark. I am one of the lucky ones.

In October of 1994, I was diagnosed with scleroderma. I did not expect to see my thirtieth birthday. In September of 2019, I had my midpoint review where I proposed my thesis project for my MFA in Film and Television at Mount Saint Mary’s University. I’m not really surprised I’m still here. Not because I found specialists who saved my life more times than I can count, but my giant ego had me convinced that scleroderma was not going to kill me because I’m a Scorpio and we’re very stubborn.

When I was diagnosed, patients were advised to get their affairs in order upon diagnosis. There is still no cure. but we’re living longer thanks to effective symptom treatment. And now we’re about to have our first FDA approved medication for scleroderma itself.
-> LINK

In addition to being a Scorpio, the work of patients, caregivers, nurses, doctors, and researchers are the reason I’m still here.

It took a lot of mental health treatment to get me through the past 26 years. Scleroderma has done a great deal of damage, but it seems to have stopped progressing. Sometimes I believe I could be in remission, and sometimes I just have no idea. The important part is I feel like I have lived through the worst of scleroderma. Now it’s all about maintaining what I have, and continuing to have a fulfilling life.

When I began graduate school for my MFA in Film and Television, I planned to make my emphasis screenwriting. My intention was to learn to produce and film my work. I thought my thesis project would be a TV series or movie, but thanks to the encouragement of my professors, my thesis project will be a stand-up comedy special/documentary, starring me.

WHAT THE WHAT?!!!

It takes years for stand-up comedians to find their voice. After that, they hit the road and build their material and if they’re lucky, a fan base. Most comedians never get the opportunity to have filmed a comedy special. Production costs, crew wages and million other things that add up to one thing- money to do it. I’ve only been doing stand-up for six years. That’s not very long. But thanks to film school, I’ve committed to filming a special in October of 2020.

The easy part will be producing. Okay, it’s not exactly easy, and the real work is done in comedy clubs. I could have the most produced comedy special ever, but if I don’t have the skills and tested material, the special will suck. So I’m in the process of filming an audition tape, sending it out and hitting the road in 2020.

Currently, I am in pre-production. This is where I create a budget. But unlike a feature or series, I need to tour to make myself a better performer and craft my set for the special. There’s no at-home rehearsal for stand-up comedy. In the past, I did it within a 100-mile radius. In the spring and summer of 2020, I will be out there on the grind.

Graduate school has given me the unique opportunity of access to equipment and guidance from faculty who work in production, screenwriting, sound design and editing. My biggest challenge is that I have to film this sooner than later because I can’t be in graduate school forever, so I am all in.

I’ve been writing this since 1994. Now, it’s time to get out there and make the world laugh at what scares me, but I am going to need your help.

As soon as I figure out the budget, I will be starting a Go Fund Me campaign to film the special. But right now, I’ve got to get on the road, which is kind of a tour. I will drive and when possible, fly all over the country to do open mics, get booked in dive bars and audition for larger venues across the country. I will be maxing out my student loans, but that won’t be enough.

Because of my medical issues, I have to be selective about where I sleep, etc and working a side hustle like Uber or Lyft while on the road could put me in the hospital. First and foremost, I must put my health first.

If you’d like to help out, please visit my Patreon page where you can subscribe or make a one-time donation. A monthly subscription will get you benefits like access to behind the scenes coverage, a video blog and whatever else I can think of to keep you entertained.

I’m going to make some swag with that turtle logo I’ve had forever. Eventually, I will create a GoFundMe campaign to pay my crew, cover venue costs, equipment rental, and post-production. I want to hire only experienced, working professionals.

I’m pondering a podcast that will include parts of my adventure that might be helpful to other patients and their caregivers. Do people really want to hear me yammering on about scleroderma? But I really can;t shut up about it. Let me know what you think.

Thank you for reading.

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.

In 1999, there was very little on the internet about scleroderma except for worst-case scenarios. Recommendations for long term care and maintenance of anything scleroderma were scarce, except the phrase, “get your affairs in order”.

Few doctors had seen active scleroderma patients. Thanks to research and effective treatment, the active scleroderma patient is no longer a myth.

Back then, I ignored the sedentary advice and I became active. When I remained active, my condition improved until a new symptom would pop up, like the problems with my feet. The issue with my feet sucked, but I learned valuable troubleshooting skills I revisit today when something new pops up.

Over time, the fat pads on my feet had deteriorated. It’s common in scleroderma. It hurt and I briefly gave up walking. I get my healthcare through the VA Healthcare System and I had been seeing podiatry specialists for years. When my feet went wrong, I understood why I had consistently been seeing podiatry.

I was fitted with custom insoles and I went from using a wheelchair at Disneyland to running through Disneyland. The insoles, coupled with gentle exercises like yoga, pedicures, massage, and a high protein diet, continue to work together to keep me mobile.

But with all of that help, the obstacle of depression crossed my path, often. The cause of my depression is usually grief from the loss of something or progression. Because these problems are in the long term, unresolved my depression must be managed, because it will never go away.

The first time I acknowledged my depression was a problem it was 1999 when my weight became 98lbs when fully dressed and wearing boots.

Scleroderma patients are unique, however, scleroderma patients are not alone when it comes to depression. As with any progressive chronic condition, patients constantly cycle the stages of grief. (Kübler-Ross Model).

Grief used to be associated only with death, but every loss has some level of grief from 0 to 100. I use Kubler-Ross’ example because it is the one that I am most familiar with. In my case, I use denial as a coping mechanism, but prolonged denial for me leads to depression or anxiety.

Depression hits me like a ton of bricks and I gravitate to inactivity. During those times of inactivity, that’s when things get worse mentally and physically. Currently, I am a few months out of a depression episode. Thanks to years of therapy, meditation skills and continued use of antidepressants, I have created my lifeline. It’s a couple of family members and a couple of close friends to whom I reach out to when I have depression or anxiety flares.

The thing is, with a chronic condition, there is no solution to the problem because the problem never leaves. I’m constantly facing current problems along with managing the fallout from past problems.

For me, denial is like both weather and climate: Trends in climate allow preparation for stormy weather. One can get through a storm, but without preparation, one storm can create catastrophic long term damage. Just like denial will get me through the day, but without preparation for dealing with denial, catastrophic long term damage is a guarantee.

If you get one thing from this post, it’s that there will be grief and pampering our feet is not a luxury, it’s a necessity. And that some necessities like pedicures help with emotional issues in addition to the physical health benefits. It helps me regain my power.

If you’re a scleroderma patient, something weird may or may not be happening to your feet. This blogpost won’t give you a diagnosis, but this blogpost does offer some things to do to find relief or prevent injury.

Here are some tips by Scleroderma & Raynaud’s UK (Twitter: @WeAreSRUK)
->> https://www.sruk.co.uk/raynauds/managing-raynauds/foot-conditions/
This organization bases it’s information on research.

Here are some things that work for me.
This is based on my personal experience and it somes with a warning:

Steve Martin in Dorthy Rotten Scoundrels wearing an eyepatch holding a fork that's corked in the eyepatch.
Don’t be this guy.

As always, please check with your physician before trying anything. I am not a doctor. I have a degree in psychology which means I am barely qualified to advise you not to stick a fork into your eye.
– Karen Vasquez  

Here are some things that work for me.
This is based on my personal experience.

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.

The loss of fat pads was a huge setback for me. It’s painful and it sucks and it did 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. He told me, “Remind yourself, I make this look good.”

An insole can go into almost 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. <- follow that link for an old-timey laugh.

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.