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.
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.
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.
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:
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.
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?
Click link below and read my guest post published by The Rude Pundit back in 2012. I talk about my experience as a female veteran from 1994 to 2012. I had a great time writing this piece and am grateful for the opportunity The Rude Pundit gave me to share my experience -and his editing.
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.
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.
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.
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.