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

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 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.

World Scleroderma Day 2015

Note:  If you haven’t seen the Wayne Brady episode of Chappelle’s Show, you won’t get the reference below.  (Watch Now)

 

Every year, tens of thousands of patients around the world, get together on social media to inform the masses of scleroderma.  What is scleroderma?  Scleroderma is a progressive, degenerative disease like Lupus, rheumatoid arthritis and … marriage.

We have come a long way in research.  Scleroderma patients are living longer, thanks to the hard work of researches, patient advocates and doctors around the world dedicated to helping scleroderma patients live longer, fulfilling lives.  Unfortunately, that is still a minority of patients.

There was a time that when a doctor said to a patient, ” You have scleroderma”, and it was followed by, “Get your affairs in order.”  Scleroderma was a death sentence.  Things have improved for patients, but I’m not going blow smoke up your a** and tell you it’s all unicorns and rainbows, because it’s not.  Unless by rainbow you mean an arch of shades of brown in the sky to warn you of the sh*t-storm ahead ( an anti-rainbow, if you will); and by unicorn, you mean one of the Four Horseman of The Apocalypse proclaiming,”Taste the rainbow, bitches. ”

Scleroderma is considered an Orphan Disease.  300,000 Americans have the disease.  To me, it’s less an “orphan” and more of a “Son of a Bitch”.   There is no cure.   Patients meet with their doctors, and weigh the options of taking medications with side effects that include lymphoma or sudden death versus, not taking medication.  The cure sounds worse than the disease, doesn’t it?  Well, risking sudden death and cancer to get medicine to stop the progression of scleroderma, is usually the better choice.  Yes, scleroderma is that bad.

It’s hard to explain what scleroderma does, that causes my body’s immune system to attack itself, but this is what I think it would go down:  It would be like being driven around by Wayne Brady.

I’m in the back seat  of a car, and see Wayne Brady driving and a frightened Dave Chappelle in the passenger’s seat.  Wayne Brady stops the car abruptly, orders us out of the car, gives us spiked baseball bats, points to what he wants to destroy, and we do it, because Wayne Brady is one scary m*ther f**ker.  Then we get back in the car and drive until Wayne Brady sees another spot of town he wants destroyed,. Dave Chappelle and I are ordered out of the car by a screaming Wayne Brady.   At one point, he asks Dave Chappelle and I, if he, and I quote, has “ to choke a bitch.”  

So on July 1st, the teal of scleroderma awareness will fade into the next cause’s color, but not for scleroderma patients and those who love them.  . I understand that scleroderma is not the only progressive, deadly disease out there that needs to be cured, but since you’re here right now, take the time to learn about it by following the links, and sharing what you know.

Scleroderma Research Foundation

 Scleroderma Foundation

Bounce to a Cure

 

 

 

 

If you are “lucky” enough to have the kind of scleroderma that progresses quickly

 

Please Vaccinate Your Children

People tell me all the time that they pray for me and worry about me because I have two autoimmune diseases. They often ask what they can do. I used to say, “nothing”. I’d like to amend that.

You can help me: Immunize your kids.

Many people, not just in the United States have a compromised immune system.  A person with a compromised immune system cannot fight infections and the person is more likely to develop an infection.  Often the infection will progress faster than someone with a normal immune system.  A person can have a compromised immune system from an illness such as AIDS or because of medication used to treat some diseases.

What is an immunosuppressant?  A drug that suppresses the immune system.

Who takes immunosuppresant drugs?
1.  Organ recipients:  When someone receives an organ from a donor, the immune system is suppressed so that the organ recipient’s immune system does not attack this new organ.
2.  People with autoimmune diseases like Lupus and Rheumatoid Arthritis. An autoimmune disease or autoimmune response is identified when the body does not recognize it’s own healthy cells and attacks them.  Immunosuppresant drugs slow and sometimes even stop progression.  This is no cure.  many patients take immunosuppreants drugs their entire life.  One example of such a therapy is lower dose of a chemotherapy drug like methotrexate.

But wait, there’s more.
Another group vaccines protect are cancer patients.  There are so many types of cancer, and the short version is that a person going through chemotherapy is more susceptible to infections.

Here is how I am affected:
I take immunosuppressant drugs to delay progression of two autoimmune diseases. Immunosuppressant drugs keep my body from destroying its own healthy cells. As long as I get rest when I feel a cold coming on or get antibiotics right away for a bacterial infection, I’m able to fight and recover well and stay very healthy.

Immunosuppressant drugs have delayed the progression of pulmonary fibrosis and the swelling of my lymph nodes in my chest, so my heart does not have to work harder to keep me alive. Because of these medications, I have avoided a lung transplant and/or death.

Why vaccinating your kids helps me and many other people.  
I am very healthy, and fight infections well, thanks to the immunization of others. If you don’t vaccinate your kids and take them to public places, or a family gathering, you put my life in danger.  There is a great deal of misinformation about immunizations and people who are very immunosuppressed undergoing chemo for cancer. Let’s not forget about children to young to be immunized that are not just at risk, but in danger around people who are not properly immunized.

There is no research that connects autism to vaccinations.  Often, children begin to exhibit the symptoms of autism the same age they receive vaccinations.  When two variables exist at the same time, this is called a correlation.   Correlation is not a cause.  These two things simply occur at the same time and may or may not be related.  The only way to determine if variables that exist at the same time are in fact related in some way is scientific study.  Not just one, but many.  I mention this because in an interview, Jenny McCarthy talks about how there  is a correlation between autism and vaccines.  That part of her statement is correct because both the symptoms of autism and the vaccinations happen at the same time.  But then she goes on to say that because there’s a correlation between autism and vaccinations, that means vaccinations cause autism.

Jenny McCarthy has claimed to have “earned” her “degree” from Google University.  I don’t think Jenny McCarthy is solely responsible for the ocean of misinformation about vaccinations.  Let’s not forget the only study that concluded autism is caused by vaccines, then the doctor who did the study, admitted his conclusion was false.  The reason he admitted his study was a fraud is that he was caught.  This is one of the reasons why the ability to replicate any study is so important.  And now, there is a day care center in Chicago where five infants diagnosed with measles because some people took their immunized kids to a public place like Disneyland.  So I’m going to say it again:  Vaccinate your kids.

I Was Frog-Marched to My Mammogram

Frog-Marched 
Commonly used in the Washington D.C. area. Synonomus with “perp-walk”. Used to discibe being escorted to/from court, forcibly by the police.

“Dude, they are so gonna’ frog march Ken Ley.”  (Urban Dictionary.com) 

 

If I have a cough more than a few days and it does not get better, I have to visit my primary care doctor and have my lungs checked.  Because my lungs are damaged from scarring or pulmonary fibrosis and my history of sarcoidosis, scleroderma and MRSA; I never hesitate when my lungs need a listen.

 

Visiting my general practitioner at any VA hospital these past 20 years has always had a long wait, but not as much lately. My GP is part of the Women’s Clinic. I’m not sure if it is more efficient because women’s clinics are new in the VA healthcare system, but finally, it’s good to be a woman in the VA healthcare system. Well, most of the time it’s good. Let’s keep some perspective. I’m still called Mr. Vasquez one out of every three times I visit the VA, but never in The Women’s Clinic.

 

My GP was out on maternity leave. The doctor I saw in her place was great. She actually read my chart before seeing me. If you have scleroderma or any other chronic illness. you know just how rare this is. She also read that I still needed a diagnostic mammogram and ultrasound. So after she listened to my lungs to rule out pneumonia, she informed me that I was not leaving today without a visit to the imaging department downstairs.

 

So I said, “I will go there as soon as we are finished.”

 

And she replied, “No, the nurse case manager will take you down to mammography”

A few months ago, I had a mammogram. The results of my mammogram came back inconclusive, and required a second mammogram and a diagnostic ultrasound. It’s not the first time I have had a mammogram require follow-up testing. Everything came back normal the first time this has happened. I was a little spooked, but I wasn’t worried.

 

After learning my most recent mammogram needed further tests via a phone call from my doctor,  I went to the imaging department at the West LA VA Medical Center the very next day.  Veterans don’t need an appointment to get mammograms because early diagnosis can mean the difference between life and death. A no brainer, right? Right. So I stopped using my brain.

 

You see, the day I went back, it was a busy Monday. I saw that eight people were waiting, and decided to come back another day. I returned the following Friday; the one day a week mammograms are not done. No big deal, I’ll come back on Tuesday. Tuesday came and went. I planned to go for my testing after my rheumatology appointment the following Thursday. The following Thursday came, and after my rheumatology appointment I hit the lab. I was surrounded by people coughing for over an hour before my name was called for a blood draw and urine sample. I was tired of being surrounded by sick people. So, (when called) I peed into a cup, gave up 5 tubes of blood and got back in my car with every intention of returning the following Tuesday. Of course, that didn’t happen

 

The next week, I was determined to get to the imaging department for the tests I needed, but I came down with a cold and decided to stay home and rest. The only thing I hate more than having diagnostic tests, is being sick while having them.

 

I do my bloodwork. I follow up on my medication. When I have an infection or complication, I am on the ball. But something like fasting blood work and mammograms or milestone check-ups, I am a flake A big flake, and if you are thinking that I am an a**hole for not getting my scheduled mammograms and following up on the results, you are absolutely correct. I am an a**hole for avoiding free diagnostic check ups that can stop a treatable disease like breast cancer.

 

I could write paragraphs with reasons for avoiding time on diagnostic tests and not one reason would be valid to any sane adult. And the doctor who listened to my chest that day, knew it. There was no talking my way out of this one. I was going to the basement to put my tits in a plexiglass vice, and that was that. I was sent back to the waiting room to wait for the nurse case manager. I don’t think my medical records were a topic of discussion, but everyone in that department knew why I was seated in the waiting room, again. And you know what, they didn’t have to do what they did. They could have let me go on my way and most likely skip my test and let the chips fall where they may, but they didn’t.

 

So when the nurse case manager came to get me in the waiting room, I got up and went. The word frog-marched came to mind. Not that I wouldn’t have gone, but I hope that will be the last time I need to be escorted by a case manager, who will make sure I stay for the tests I need. Flaking on my follow-up mammogram and ultrasound was selfish, careless and an overall dick move.

 

I had a mammogram before, but this one took longer. Next, it was determined I needed an ultrasound. I went straight from the mammography room to another room for the ultrasound. It wasn’t anything special. They do this for everyone who needs a follow-up mammogram. Before I finished putting on my clothes after the ultrasound, I was given my test results in writing, signed by a physician I did not see the whole time I was there. Was she kept in a cabinet somewhere big enough for her and a monitor. What was this witchcraft?!! We may never know.

 

I am thankful to the staff and providers at the West LA Women’s Clinic, who took the time to show one patient how important it is to take time for more tests, no matter how burned out she feels.

 

By Their Actions, Most Americans Don’t Support Veterans, No Matter What Their Car Magnets Say

Polished men and women in uniform are seen all over our country on billboards, TV and magazines.  Photographs of them incites pride in Americans, and have become a symbol of patriotism and service to country.  They truly are the best and brightest.

 

 

 

 

 

We love to see pictures of our service members bright and new.  Just like we love our flag.  We hang it in front of our homes with pride.  We remember to take it down every night at sunset if we do not have a light on our flag.

Then, life becomes a little more hectic, and we leave the flag out one night, without a light on it.  Then one night becomes two. Days become weeks, then months until all that is left is a faded cloth in shreds.  This is exactly how we treat our military and veterans.  We love them when they are polished, with faces full of hope and service.  But when they return damaged, they aren’t shiny like we remember and our interest fades.

The infamous Shock and Awe, did not occur in 2003.  It happened to veterans and their families when they returned from the war and were denied health care, or asked to wait for more than a year to be seen.    There are aspects of veteran’s health care that have been improving in the past decade.  The knowledge and technology exists to treat veterans and  improve lives of those injured or disabled.  Unfortunately, to fund what veterans need requires and act of Congress.  As Senator Tom Coburn of R-Oklahoma, gave us a great example how one senator can stop a bill passed unanimously from the house in the Senate.  Once again blocking funds to help veterans.

I am certain that most Americans do not want veterans to suffer, but it’s happening.    As time passed, the Afghanistan War, Iraq War and the troops they claim to support,  were pushed into the back of their minds.  Things got busy for them.  Maybe they don’t have time to find news about what’s really going on in Iraq and Afghanistan.  Maybe they work more than one job, and only have time to catch their local news.  With such a limit to free news,  they can easily recall more about Kim, Kanyaye and Kim’s ass, than the details of the H.R.5059 Clay Hunt SAV suicide prevention bill that passed the house unanimously, but was blocked by one senator, Tom Coburn R-Oklahoma.  Senator Coburn blocked it because, “.. it duplicated existing Department of Veterans Affairs programs and was not paid for by offsets elsewhere in the budget.”  (Military News.com)

That’s funny, in 2002, 2003 and 2004, while sitting in a Loma Linda Veteran’s Hospitals with a minimum two hour wait for scheduled appointments, the TV’s in the waiting rooms tuned to CNN and Fox mentioned nothing about cost offsets to fund a war.  In fact, their coverage of the ramp-up to both the Iraq and Afghanistan wars had an ESPN sports channel feel to it.  Then, when injured service members came back wanting care for the mental and physical injuries they earned in war, suddenly cost was the problem.  You see, it takes an act of congress to make any changes to VA health care.  Unfortunately, members of congress have constituents and donors to answer to so the information they are lacking to understand the need for funding goes ignored.  Well, ignored until something so horrific hits the news, it seeps between the Kardashian coverage and angers people with “Support our Troops” magnets on their cars.   Of course, the anger is short lived.  So congress can act like it’s going to do something, put a few bandages in place to give the appearance of doing something, until there’s another Kimyaye pregnancy divorce rumor.   Then, while everyone’s eyes are on KimYaye, they can block something veterans need.  Because like this flag, Veterans are great when they’re new and shiny, but eventually they will be left flapping in the wind, shredded and decaying.  Until another war of choice comes up, and just like the owners of this flag will go out and buy a new one to replace it, congress will fund wars that will provide a blank check for shiny new Soldiers, Sailors, Guardsman,  Marines and equipment.  Then funds stop when they need care the most.  Because that is how The United States of America supports its troops.

 I have been in the Veteran’s Heath Care System since 1994. Over the last ten years, I have been hearing veterans health care providers and staff use a phrase that is turning into mantra to ‘soothe’ veterans.  It’s not just one hospital,  I have heard it at three.   I have heard it said so many times, it almost overshadows the chaos and despair lingering in the halls.

“The Veteran’s Health Care System has a very large case load.  By jumping in line like that, you are delaying the care of your brother and sister veterans.  We all need to be very patient.”

It should not be a veteran’s problem the Veteran’s Administration is understaffed and under financed.  But the citizens of the United States make it a veteran’s problem.

As a patient who has put aside her fear of wasting a doctor’s  time in the emergency department or waited patiently in a specialty clinic waiting room for cancellations and no-shows,  I do not wish anyone else’s care to be delayed.  I do question the statement used to ‘calm’ veteran’s down by playing on their guilt.   I know we are supposed to be nice and share, but since when has good manners trumped health?   It is a well know fact that those who fight in combat, fight for their fellow warrior.  A veteran will fight, but if you tell them that that speaking up on their own behalf may hurt a fellow warrior, well that’s like shooting fish in a barrel.  The only thing that may stop a warrior from fighting, is if it will endanger the well being of another veteran.  It’s quite brilliant.  I’d like to shake the hand of the douchebag that came up with that gem, and punch them in the face.

Asking someone to wait in an overcrowded system seems like  a perfectly reasonable request, but not if someone’s  life or well being depends on it.  In fact, many after-combat problems like amputations or infections could be prevented with early intervention.   Is it the VA staff?  No.  I have met many who work in VA facilities that want to provide veterans with the best possible care, but often have to justify funds spent on an individual if it’s not something obvious like a heart attack.  And after making requests and being denied the resources to help a veteran, eventually the goal becomes to just keep the veteran alive until the resources are available.  Does that sound okay to you?  Allow me to rephrase that:  Would that be acceptable for your son or daughter, brother or sister, mother or father?

Americans do not support their troops no matter what their car magnets or Facebook statuses say.   The truth is, we’ll shop while you’re at war, and when you come back, we’ll ask you to wait for medical care.  Am I over reacting?   We did allow Congress to leave for winter break without financing programs veterans and service members desperately need.  If anything, I’m under-reacting.

Over the last ten years,  many Veteran’s Health Care providers have been asking veterans to wait for health care.  It’s nothing new.  Veterans have been fighting for benefits and care my entire forty-four years on this planet.  When I entered the VA health care system in 1994, it wasn’t about asking for treatment, it’s about solving the riddle of your own health to figure out how to ask the right questions to get the correct treatment.

I had to learn to set aside my fear of wasting someone’s time in n emergency department, or crash a specialty clinic like a college class and  wait patiently in a waiting room to take the spot of  a no-show or cancellation.  You know, veterans can be seen in Veteran Hospital Emergency Departments is they need to wait months for care.  It takes patience, but I have done it on many occasions and in at least one case, it has saved my life.   Veteran’s must not be guilt-ed into waiting for care they need.  If we really ‘support the troops’, why is the burden of sacrifice on veterans alone? The answer: Because on election day, they got in their car with a yellow ribbon magnet and flag sticker on their bumpers, drove past their polling place to get home in time to vote for their favorite contestant on American Idol.    I think this flag is a great representation of how by actions, the citizens of the United States really  feel about service members, veterans and their families.

Photo by Karen Vasquez taken from her car in Orange, California on Christmas Eve, 2014.

























Am J Public Health. 2007 December; 97(12): 2132–2142.

WAR & Military Mental Health

The US Psychiatric Response in the 20th Century

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2089086/

“Herbert X. Spegal,  one of the first psychiatrists to observe soldiers suffering from war neurosis in Tunisia, was convinced that soldiers were not primarily motivated by hatred for the enemy or the ideals of liberty and democracy, but by the bonds with their buddies and regard for their officers.”

 

He Told Us To Go Shopping, Now The Bill Is Due 

By Andrew J. Bacevich

Sunday, October 5, 2008

Washington Post