Pain & Scleroderma

Don’t let the bastards drag you down.

New M.D.s are emerging with the belief that opioids should never be prescribed, and instead, other issues need to be addressed. Now, unless they have a cure for scleroderma, they need to be taught about chronic pain. It’s a pain in the ass, I know- but telling myself that the doctor I am speaking to doesn’t understand the treatment of my chronic pain, and it is my job to teach them, has saved my life on too many occasions to count.

Before I figured that out, my initial response was, ” f##k those mother##king motherf@&kers”, but that only delayed things. I have found that teaching a doctor what works and explaining that scleroderma pain is not nerve pain and the only way to resolve the pain is by relief.

Opioids work because there is no cure for conditions like scleroderma. Resolving the issue would mean that scleroderma would have to be in remission and all of the damage done to the body is returned to the pre-scleroderma (or “your chronic illness here”).

I have given presentations to first-year medical students about chronic pain, and how denial of pain medication exacerbates symptoms and causes depression, and actually increases the pain. Right now, there is an opioid addiction epidemic. Nine times out of 10, a chronic illness patient who develops an opioid addiction does so because they are forced to suffer higher pain levels before seeking care. The opioids are taken away before pain is resolved. Why is that?

Because we don’t look sick if we are emotional. Healthcare providers are trained to identify emotions as drug-seeking behavior. The actual prevention of opioid addiction by veterans healthcare and really any medical facility have caused an increase of addicts. Initially, someone in pain wants the pain resolved. Here’s what happens: When denying pain relief, pain becomes more unbearable. If you have experienced excruciating pain relief, you would understand why people denied pain relief turn to drug dealers.

Now, you may be asking yourself the same question my parents asked me when I was a teenager, “Karen, what the hell do you know?”

Well, here’s what I know after living in constant pain for 26 years: No one listens to me, unless I am calm and confident about what I’m asking for. After twenty-six years in the VA healthcare system and using private “golden insurance”, I have learned what to ask for. I was ignored by doctors, denied pain medication dosage by well-meaning nurses who thought I had a drug problem.

Now, when I am in pain and a well-meaning doctor or nurse tells me to make an appointment with the pain clinic, we have a little chat. Sometimes that results in speaking to a doctor’s attending physician all the way up to the department head. And nurses who do that, regret it once I tell my doctor who knows I need to be on pain meds in the emergency room. I’ve got stories. Too many for this post- and I want to save you time. If you’re in excruciating pain- I want you to get relief faster than I did. So here’s what I do now.

NEW PATIENTS, PLEASE NOTE: If this situation is new for you, there are things you must get into place:
1. Mental health care. Work with a psychiatrist or even better- a psychopharmacologist along with individual counseling. Insurance & the VA love group therapy. But after years of group therapy and support groups, I found that I needed to learn and work through my own issues. Groups are great after individual care. They try to sell group therapy first because it is most cost-effective. Cost-effective isn’t always best. And before you see a psychiatrist or a psychopharmacologist, you may need to see a therapist first determine how bad your depression is. I advise this even if you think you think you don’t have depression- you may not, but seeing a therapist immediately after diagnosis, will help establish a lifeline you may need later on in your darkest hours.


It took me years of mental health misdiagnoses and it nearly killed me-> My Story It’s not mandatory to read it, but sh*t really went south for me. Depression nearly killed me faster than scleroderma, sarcoidosis, and disability.

After two decades of medication management, self-advocacy, meditation classes, and being a parent, here is what I do now to combat pain.

I pair a sedative with Tylenol or Motrin. If that doesn’t work at home, I go see my rheumatologist for a Norco prescription for 2-3days then wean myself off by alternating with Tylenol and Motrin.

It’s hard to get a doctor to prescribe opioids. I am almost always told “no”r they try to give me tramadol, gabapentin, and new meds when I first ask. So I calmly explain I do not have nerve pain and gabapentin and tramadol work for nerve pain and that I need to bring my pain level down to zero so that I can get some rest. I tell the doctor my plan, that I will take Norco for 2-3 days and then wean off Norco by alternating with Motrin and Tylenol. The narcotic is needed for excruciating pain. (I know, I repeated myself. It’s that important.)

The first rheumatologist who told me she never prescribes opioids ended up prescribing me opiates less than ten minutes later. How? I calmly asked to speak to her attending physician. If I get denied after talking to her attending physician, I calmly make my case to a department head that results in success.

When a doctor or nurse tells me I’m not acting like I’m in pain, I tell them that after years of therapy and PTSD from being denied pain medication, I have learned how to advocate for myself when my doctors do not work in my best interest, I am in survival mode. Of course, they always follow up with a BS line that opiates are bad for me- then I remind them that pain medication is a tool I use to help me recover from infections and injuries. I emphasize that I am here because my pain is out of control. If given relief from pain, I am less likely to use these meds not as prescribed. I remind them that I live with dulling the pain every day through diet, meditation, and movement- and I cannot function in my current level of pain.

Thanks to our culture’s vilification of chronic pain and pharmaceutical company lobbyists, we the patients must teach doctors. If chronically ill patients could afford lobbyists, we’d have a cure for this already. But that’s just my opinion. That doesn’t minimize my gratitude that Big Pharma has medication and treatments to keep me alive. Their salespeople used to give away the best pens. I do miss that.

It’s a pain in the ass- but now, I get what I need. I hope that my experience will save you, the reader, some time; or energize your own advocacy.

Sometimes you’ve gotta tap a doctor on the nose to get them to do what’s needed. (Tap with words, don’t be stupid.)

God gives us only what we can handle.  Apparently god thinks I am a bad ass

Scleroderma and Dry Skin

Image

What’s the best product for dry, cracked skin with scleroderma? Whatever the hell you like. Please allow me to explain.

First, due to poor circulation, the skin does not get enough blood to feed the fingertips and hands. As our skin breaks down and replaces healthy tissue with scar tissue, sebaceous glands do not usually regenerate. Sebaceous glands secrete oil or a waxy substance to lubricate our skin. There are studies that show sebaceous glands growing back in rabbits and mice, but they all do not have scleroderma.

Over time, our skin loses the maintain moisture. When Raynaud’s is new, this happens slowly and scar tissue from dead skin begins to appear. Eventually, along with the onset of the granular healing of ulcers, the cracked dry skin exacerbates pain and can make a minor ulcer, a major ulcer with the smallest of injury.

For me, it all seemed to happen at once, but looking back I can map out the pattern of color change and soreness, to light pitting -which took about two years to occur. The extremely dry skin came after pitting. But just like everything, it may be different for you. I am basing this on my experience. I’m not an expert, but here’s my story. Maybe you can use my experience to help you or someone you know.

The ulcers with severely dry skin become overwhelming. Especially when Raynaud’s kicked into high gear due to a drop in temperature or stress.

Scleroderma skin, especially on hands and feet- at least for me- is nearly impossible to keep from cracking. The only thing I have found to extend the efficacy of any moisturizer is to at least massage lotion into the area, twice a day, constantly re-applying lotion, and a, monthly mani-pedi.

Massaging lotion or a preffered oil morning and night in addition to applying and reapplying a moisturizer helps keep the dry skin manageable. When I’ve been suffering from pain in the skin on the bottom of my feet or hands, moisturizer helps prevent pain from dry skin and helps the integrity of the skin.

I like to use sunscreen for the face on my hands. It’s not as greasy as some hand lotions and zinc oxide – the active ingredient in sunscreen, has anti-inflammatory properties. But most of the time, I just use whatever is closest. When I run out or forget to bring my lotion with me, I have used antibacterial ointment, and lip gloss. One time, at my lady-parts appointment, while I was getting dressed, I grabbed a little packet of lube. It was an especially cold dry day in Wisconsin and that lube provided a little relief and protection from the cold dry air on my fingertips and knuckle until I got to my nearest store.

It is my opinion that the best brand of any kind of lotion or oil is one that you or I like. Every lotion loses its efficacy after a while. I rotate between Nivea 48 hours, Vaseline brands, light oil, and Lush when I’m feeling fancy.

One patient suggested a diaper cream like Desitin. I may give that a try. Not sure if I like the smell, but there are times when my dry skin is worse than usual, so I’m going to keep some around and try it out the next time it happens.

The terms, “natural” and “organic” are arbitrary. I love buying organic and natural, but it’s been my experience that without constant reapplication and massage, every lotion is not effective. Whether it’s natural, organic or petroleum jelly, use what works best for you and fits in your budget.

various skin moisturizing products dumped from a bag.
Here are the contents of my facial skin-care bag and the all-over body moisturizers I use. I change it up all the time. Samples and stuff that comes as a gift with purchase are my favorites. It’s the best way to justify using some upscale facial moisturizers on my hands. It’s nice sometimes, but I don’t think it works better than the all-over body lotions for hands and feet. Murad has some great starter kits. I’ve been using them for 10 years on my face because it works for me and I’m not getting any younger.

Scleroderma in 60 Seconds

Silluette of a woman wearing headphones speaking into a microphone.

Why a podcast? Why not a podcast?

I have started a podcast called, “Scleroderma in 60 Seconds”. I came up with the idea over a year ago and it’s taken this long to figure it out. The first episode is dropping in the next week. I’m a bit of a perfectionist and I’m almost there.

Why a podcast? Scleroderma is no joke. It’s a progressive, degenerative illness that often results in death. When I was diagnosed, they suggested that I get my affairs in order and pick out a dress. I have trouble picking a pair of black yoga pants every morning. I was not about to try to pick a dress for all of eternity, so I decided that scleroderma wasn’t going to kill me.

I know I am not powerful enough to prevent my own death but the right amount of denial certainly didn’t hurt. For those of you reading this blog for the first time, here’s a little history.

I’ve had scleroderma and sarcoidosis for 26 years. I could write encyclopedic volumes about my medical experiences, but that is not my story.  I’m still here because I learned to laugh at what scares me. Like many patients, I found the strength and the courage to advocate for myself.  

I was inspired to talk about my experience in 2001 after a 3-year-old in a shopping cart asked, “Mommy, what happened to that lady’s hands?”

The embarrassed mother apologized and silenced her curious child, but after months of hiding my hands, I replied, “Thank you for asking.  I have scleroderma.”

A short conversation continued and the little boy simply wanted to know why my hands looked different than his.  

Something clicked and I found my voice.  Scleroderma is no joke.  It’s a progressive degenerative disease, but humor helped me explain crazy symptoms to doctors, nurses, family, friends, and total strangers.  

It’s not my job to make people feel at ease about my disabilities, but when I want people to learn, humor puts students at ease and that makes things easy to remember.  

Eventually, physicians asked me to do grand rounds.  At the end of each round, my exam room was standing room only with medical students that had to be forced out by attending physicians.  

My casual manner with doctors also helped save my life after a symptom was ignored by radiologists and physicians, which led to an additional diagnosis of sarcoidosis.  

I have lived through the worst of scleroderma and sarcoidosis. Now, I am able to do what I wished I could do in my 20s, realize my potential.  

Armed with a stable diagnosis, I started a blog, worked with some non-profit organizations, branched out into stand-up comedy, and now I’m in graduate school.  My thesis is going to be a stand-up comedy special/documentary.  

For years, women with illnesses like scleroderma, lupus, and fibromyalgia were told their symptoms were all in their heads.  The biggest factors of course are the standard patient model is a white male and American culture has us conditioned to cowboy-up,  rub some dirt on it and walk it off. 

Since I began recording podcasts, I have found my guests eager to learn more about rare illnesses, and the crazy things patients face just to get effective treatment.

I have been in VA Healthcare and have had primo private health insurance, Look, medical insurance companies and the VA are a lot alike, but medical insurance companies have better PR departments.

Scleroderma in 60 Seconds is designed to reach people who do not deal with scleroderma or chronic illnesses every day. I believe this has the potential to inform voters, educate those who support caregivers in their family, strengthen patient advocates, and create allies outside the chronic illness community.

I’ll be announcing the premiere soon. Right now, I’d like to invite you to follow the podcast page on Facebook or on Instagram.

I hope that you will find it entertaining as well as helpful. Thank you for reading!
Best,

Karen

Scleroderma in the Time of COVID-19

I’m immunocompromised. When H1N1 hit in 2009, my son and I both caught it before the vaccine was available. My son rode it out under the close supervision of his pediatrician. Shortly after, I developed H1N1 symptoms.

My GP ordered me to the Loma Linda Veterans Hospital Emergency Department because I was and continue to have a compromised immune system. I take immunosuppressant drugs to keep scleroderma and sarcoidosis at bay.

The Emergency Department immediately gave me an antiviral medication, which shortened my bout with H1N1 significantly. Still, for 48 hours, I felt like I was going to die. I don’t say that often because I’ve had many near-misses with death. I am alive today because I was able to be proactive immediately. Had I not had the option to go to the ER for immediate treatment, I most likely would have died.

Here we are 11 years later. After H1N1, if it was never an “if” for another pandemic, it was when. With air traffic and people walking barefoot through security and heaven knows what else, 10 years sounds about right.

COVID-19 has a 14 day incubation period with no symptoms. Tests are not readily available. It’s not a matter of if, it’s when one gets it. At this point, it’s pretty clear that we all will become ill or be carriers.

It’s safe to say at this point, everyone is either carrying it or has it. Out of the 327.2 million United States citizens, 97% of us who get it will not die. As part of the immunocompromised, I am at a higher risk of becoming one of the 3%.
3% doesn’t sound like a lot, but 3% of 327.2 million is 9.8 million. That’s not the world, that is just the United States.

Fear paralyzes me. So I replace that with respect, respect for the seriousness of COVID-19. Respect to individuals who do not wish to be hugged, touched, and decide to self-isolate.

At first, I did not take it seriously. After reading what is going on around the world and listening to doctors and nurses speaking out anonymously, I had a “Come to Jesus” moment. I accept that apathy is a privilege. COVID-19 is here, and now it’s time to face the challenge.

Los Angeles is eerily quiet. On my way home last night, I stopped at 2 gas stations. The gas stations had the pumps on, but the gas station stores were locked, and there was no one in sight. I’m scheduled to host a show on March 27th, but it will most likely be canceled.

Last night, the laughter I got at The Federal Bar in NoHo with the Rebels of Comedy, healed the room and gave me a ton of energy, but beneath the laughter, the weight of the past 24 hours hung in the air like thick, invisible smoke.

I don’t really follow sports, but I felt crushed by the postponed NBA and NHL, travel bans, and the chaos we face as a country.

Entertainment keeps us busy, laughter heals. I don’t want to stay home, and I’m sure no one does.

Originally, I wrote, “I may have to self isolate”. Even when the world is shut down, I’m still in denial- not my best coping mechanism.

This is our wake-up call, and we cannot let apathy win. People’s lives depend on it.

Scleroderma and the Holidays

It’s that joyful time of the year when scleroderma patients see family and friends. If you’re newly diagnosed, I suggest packing sedatives or something edible that will take off the edge. And by the way, if you’re newly diagnosed, welcome to The Suck. Don’t panic. I’m going to make you laugh at what scares you.

People. We’re helpers, right? We see a fellow human with a problem and we offer unsolicited advice because we want to help. Any human with a chronic condition has experienced the opposite of helping. People with families void of codependency don’t have this problem. Mostly because few families are void of being void of codependency.

After I was diagnosed in 1994, I had the option to leave college and come home to my family. I opted to stay in school in Wisconsin, far away from my family in California. According to my family, I did it because I am “a stubborn Scorpio and fiercely independent.” I don’t know about you, but I took that as a compliment.

Sure, I’m stubborn and confident with stunning sex appeal, but it’s just a coincidence I am a Scorpio. Keeping my independence was the best decision for me. I believe my family would have done everything for me until the only working parts of my body were a fully functioning head and maybe – maybe my torso. I would’ve given up. At the time, scleroderma was a death sentence to those who knew little about it- especially after that movie, “For Hope” came out. When I’m unsure of something, I can talk myself into just about anything, even giving my responsibilities to my family. People, they’re helpers.

When family helps us, it’s not a bad thing. Forcing myself to adapt allowed me to live a fulfilling life. Some might call that ableist, but I had to become something that never was- an active scleroderma patient. And ADA requiring adaptations was a big help with this. I did not want people to visit or hang out with me because they believe I need their help.

Things got easier once I stopped being a warrior. War is a lot of work. To be constantly at war is exhausting, so I opted for hostile negotiations between my body and my screwed up and confused antibodies. I rest extra when needed. Avoid foods that promote inflammation for me like unfermented soy. I exercise, especially when it hurts because it makes the pain stay under control. It took me 15 years to get to that point and I hope that this blog will help others- maybe even save them some time.

I’m doing first person because I am basing it on my own experience. (trying to make it not about me, but still about me) What were we talking about? Oh right, helpers.

I have been through 20+ years of holidays, celebrations, backyard barbecues and intergalactic keggers. I have narrowed it down to three types of helpers:

Helpful: The person who never feels sorry for me and supports my decisions. Asks questions before they disagree about my health or offer advise. They never start a sentence with, “Have you tried…” Or “My doctor told me…”

Wellness Metric: The person who goes on about their own problems they cannot solve, then diminishes their own problems with a backhanded compliment. “You know Karen, compared to you I have no problems. I don’t know how you do it. I would have killed myself by now if I were you.” (Not hyperbole. This has been said to me more times thsn I can count.)

Not Even Sex With Thor: No matter how well I am doing, this person thinks it’s all an act. That I am being brave when technically, I’m just being. There is nothing that will convince this person my life is not miserable and I don’t need constant sympathy. I could tell them that while doing laundry I found $100 in pair of jeans; took that money to Vegas and bet it all on black. I could win $100,000 and use it to buy a ticket to see Paul McCartney, and become such good friends Sir Paul introduces me to Chris Hemsworth (whom for our purposes today, is single) and we spend the weekend together. When I get home, instead of breaking up with me, my boyfriend congratulates me on sleeping with his man crush. That could really happen and I would still get a, “You’re so brave.”

The one that irritates me most is the Wellness Metric.

Happy Holidays!

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.