Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why. I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison.
Why is cancer so infuriating to patients with rare diseases? Well, obviously, people have heard of cancer. It occurs more in the general population. I have seen many statuses and comments sharing frustration and anger about how many other diseases get more publicity and funding than #scleroderma research. Since 1994, I too have been frustrated about how everyone pays more attention to cancer. In 1999, I thought that I would rather have #cancer, because at least most doctors know what cancer is, and how to treat it. My frustration eventually turned into action.
I decided to learn more about cancer to see if there were similarities I could compare to scleroderma and share using both cancer and scleroderma as search words. What I found and concluded, surprised me.
I made some interesting discoveries. Cancer research and patient care, have provided caregiver models, and education programs. Some cancer drugs are used in lower doses to slow down the disease process in autoimmune diseases by immuno-suppression, like methotrexate.
Cancer research has also brought us the infusion clinic. Because I have infusions of a powerful immune suppressant drug every eight weeks to accompany my dose of methotrexate, as a non-cancer patient, I still benefited from cancer research and patient care. More people get cancer, and many have difficulty when IV’s are needed. Not only did I get the best nurses for difficult IV’s, I also received education from these nurses about how I could benefit from a power-port.
Okay, what were we taking about?
Cancer research has helped lead the way in the care of chronically ill patients. Yes, scleroderma and other patients with other illnesses, have benefited from treatment and care of cancer patients. But wait, cancer isn’t the only condition that helped improve patient care. How about the care of individuals who are paralyzed by stroke or injury? There’s some rehab crossover. How about Diabetes? Yep, the care of diabetes patients has benefited many a scleroderma patient when it comes to Raynaud’s in feet. It makes it easier to get insurance to cover orthodontic inserts, because the diabetes is familiar and when a podiatrist says, “We see this in the feet of diabetics, and treat it the same.” Of course there are many differences, but by pointing out similarities in a rare illness to one that’s familiar, it makes it easier for the person you are teaching to learn and recall. General practitioners know that poor circulation causes infections and amputations of limbs. If you are the scleroderma patient and a doctor recognizes a symptom from an illness they know, about that is the scleroderma patient’s opportunity to compare scleroderma (or insert illness here) the similarities to scleroderma. That will help that doctor recall scleroderma from the Rolodex# in their brain.
Here is one way I use recognition:
My quick answer for decades to the question, “What is Scleroderma?”
My short answer, ” Scleroderma is an autoimmune disease in the same family as Lupus & Rheumatoid Arthritis, except it affects connective tissue. You know how there are different types of cancer, there are different types of autoimmune diseases.”
I know, it’s not all that short, but it’s as short as I can get. Recognition of Lupus or RA helps. If someone hasn’t heard of those, I add a blurb about diabetes. I will say something like this:
“You’ve heard about diabetes, right? Diabetes is also considered an autoimmune disease. “
Most people are surprised by that information. They recognize diabetes, and now you’ve connected scleroderma to diabetes. Just like throat cancer is different
In other words, those who named cancer did well for marketing purposes. No matter what kind of cancer one has, everyone knows about cancer.
So when you see all the pinking going on and awareness campaigns of cancer , or more well known causes year-round, do some research. Find similarities between the progress in patient care and how they have benefited scleroderma patients, in small ways or tremendously. When you do something like that, it also gives you a way to join the conversation about a more well-know disease and even help other causes by sharing their fundraising information.
Now you’re probably thinking, “Did Karen just say I should share information about more popular causes than my own?” Yeah, I am and here’s why: Research breakthroughs and progress in other illnesses, benefits research in other areas. One example is Benalysta for Lupus. Benlysta was approved by the FDA for the treatment of Lupus. Oh wait, it was THE first medication FDA approved for treating Lupus. As I write this, there is research being done to find out if Benlysta can be used to effectively treat scleroderma. (See what I did there)
Another idea is a compare and contrast. Remember my post about how a woman I spoke with at Social Security who thought scleroderma was a skin condition? Well, find a skin condition, learn about it and understand the similarities and difference, so that you can have a better reply to the “skin condition” thing.
Anger from cancer getting more attention is definitely warranted, but based on my experience, acting in anger is not the best idea. I think as a community of scleroderma patients, if we can take the conversation outside the scleroderma community by relating experiences in common with patients of other illness, we can get the word out faster. A rising tide lifts all boats. Research progress helps the illness community over all. We can go back and forth for days about how one is worse than the other, but all illnesses suck. Awareness is useless if we don’t teach anything along with it. And teaching does not include photographs for shock value, but that’s a whole other post.
Thanks for reading! -K
**At the time, I lived in Murrieta California and Loma Linda was my Veterans Healthcare center.
** When pain or anxiety hit me, I am not shy about asking for them, in spite of the stigma of “depending one them”. Pain medication lowers my anxiety, because it takes away or dulls it to make it tolerable. High anxiety makes my pain worse as well. I have often been relived of joint pain and swelling pain, with anxiety medication, because I have a diagnosis of major depression and anxiety. Many patients can attest to stress making symptoms worse. I ask for these things with the risk of stigma in the back of my mind.
*** Before I stopped my doctor, I assessed his surroundings and mannerisms, to determine he was not rushing to a crisis. Also, if he was on his way to a crisis, he would not have stopped to speak with me. When I am in pain, or during a crisis situation, I have an unusually clear head. It came from two decades of experience. It may sound rediculous that someone in so much pain, has such a cool head, but please keep in mind I have 20 years of advocating for myself. I have driven hours for care while in excruciating pain. And when I say I have driven hours, I mean I was driving the vehicle. I have learned calming techniques to be able to speak on my behalf. I will admit though, the longer the problem continues, the more the F bombs fly.
#If you don’t know what a Rolodex is, Google it you young whippersnapper. And get off my lawn!
And yes, even when you feel like you are dying.
Scleroderma is a progressive, degenerative and fatal illness; but the fatality part can take decades. When I was first diagnosed with scleroderma in 1994, I was expected to rest and wait and see if I lived through it. I was discouraged by well meaning friends and family to buy and do whatever I wanted, because it was said, but implied that I was going to die. And I did those things. I spent money I should have saved or invested, but luckily someone did say something to me right after my diagnosis that I have kept in the back of my mind for twenty years. It was my boyfriend at the time. He went with me to the VA hospital doctor’s appointment and was in the waiting room after I was given the news I had scleroderma. During our conversation on our three-hour ride home to La Crosse from Madison, he said, “Karen, you can be hit by a bus tomorrow. You don’t know if this is going to kill you.”
And he was right. Of course I’m going to die, but because I had this horrible diagnosis it did not invalidate that I felt pretty normal except for the Raynaud’s in my fingers and toes. I could still exercise. In fact, in 1996 I moved into an apartment down the street from an amazing running trail and began running. I wasn’t dying. Horrible things were happening, like the scare I had the first time I had to be admitted into the hospital for abdominal pain in 1995. I had crippling abdominal pain and after the usual appendicitis and ectopic pregnancy diagnoses were ruled out, the next step was surgery. That was the day I learned that Raynaud’s can happen anywhere in one’s body. Well, not everywhere. Just the blood vessels of any kind. The team of doctors, after much deliberation were now trying to rule out the blood vessels to my colon were not in a severe Raynaud’s attack and caused a part of my colon to become necrotic. CT scans were run, and as we waited for the results, the team was preparing for surgery because if that were the case, part of my colon if necrotic, would have to be removed. I was waiting for test results to confirm a diagnosis that would require surgery. If surgery was necessary, I was going to be put under anesthesia not knowing if I would wake up with a stoma and colostomy bag.
My room mate brought me to the ER, but she had to go to work. I was alone, but I soon found out I wasn’t completely alone. This also may have been the event that has endeared the state of Wisconsin to me, and it’s people.
For those of you who may not know, I moved to Wisconsin with my boyfriend to go to nursing school. He was from West Salem, and his family consists of the nicest people I know on the planet. By the time of this event, we had broken up. Even though we were no longer together, his family still treated me like family. If I needed something, they were there to help. They were my “family” in Wisconsin, so I was never completely alone. The luxury of that relationship and not having blood relatives nearby, which I learned from this experience, is that I did not have to watch a relative sit next to me for hours, feeling helpless and frightened. Sure, I felt helpless and frightened. But for some reason, when someone is with me when I go to a medical appointment, test or treatment, I feel responsible for their feelings. I feel I need to comfort them. Maybe that’s how I avoid feeling the fear and helplessness, by focusing on a person I am with. I was alone in my hospital room. I think I had called my mom. But I was in the hospital, alone.
This was probably the longest I have ever waited for CT scan results. Sure, the test was STAT, but I was in excruciating pain, and pain medication could not be administered until they knew what was happening. You might be thinking: How cruel! They let me lay there in pain. I have a very high tolerance to pain, and I rarely cry from it. This time, I was sobbing. But, because there was no other way to know what was going on inside me, pain was the messenger. I needed to feel if the pain would travel, or progress to a larger area. Yeah, sure that sucks. But I use pain all the time to let my body tells me what’s going on, and that has served me well these past twenty years. It’s not easy to do, but I’ve done and continue to do it. Don’t worry, I’m not crazy (as far as you know). As soon as pain as a tool is no longer needed, I will take a morpheme injection without hesitation. But while I waited for those results, time seemed to stand still. There were times the pain got worse or less worse, but nothing below an 8 on the pain scale.
Finally, my doctor came in with the CT film (This was the 1990’s) and a nurse holding a dose of morphine. As she injected the shot into my IV, the doctor told me Raynaud’s in the blood vessels of my colon was ruled out. He showed me my abdominal CT scan and my ovaries had these spots all over them that looked like exploding firecrackers. I had fibroid cysts, and they were bursting, causing severe abdominal pain. It wasn’t caught on an ex-ray, because it was all blood and it was like Disneyland fireworks in there. I think if I took a stethoscope to my abdomen, I could probably have heard Julie Andrews singing, “If You Wish Upon A Star”.
I had been taking Depro-prevera shots for about a year, and stopped when I broke up with my boyfriend. I hadn’t had a period in months, so my eggs had been on standby. So hearing about these bursting fibroids, I pictured my eggs fleeing my ovaries through the wrong exits and exploding. (Pandemonium and mayhem. I wish I knew how to animate, this would make a great cartoon. I would call it: The Great Egg Exodus.) So I got to go home with my colon intact. It was the first time I learned loosing parts like my colon were possible, but you never know. Here I am nearly twenty years later with an intact colon.
What endeared Wisconsin to me, was my small community. I had no family, but I had people who cared and showed it. My roommate brought me clothes. Friends from school stopped by to see if I needed anything. My ex-boyfriend stopped by to check on me and his sister called to see if I needed anything. As I spent the next few years in Wisconsin, my ex-boyfriends family continued to invite me over for holidays, weddings and dinner. I also had the privilege to get close to his sister Roberta, while I was her roommate.
I want to tell you about Roberta, because although we barely kept in touch over the years- well, I’ll just explain. I always thought that long after I had died from scleroderma, Roberta would have raised her family with her husband Chris, and live a long life watching her grandchildren come of age and showering them with the love and kindness she seemed to flow from the infinite source that was her spirit. A few years ago, Roberta passed away from metastatic breast cancer. As I write this, I am still puzzled I am here, and she is not. I have no words to share about the anger and confusion I feel over that. I know, I’m a writer and I’m supposed to have an imagination, but some things are too deep for me to bleed onto this paper. It only confirms my belief that Billy Joel was right: Only the good die young.
My point is that you may be diagnosed with something that might kill you, but there is a possibility it won’t. I read blogs and Facebook statuses of many scleroderma patients who are absolutely hopeless. I read the phrase, “It’s in God’s hands now.” Look, that may be true, it may be in God’s hands, but the passiveness of that statement disturbs me. I have read people going to the ER for things I have been there for a ton of times, and saying goodbye as though they don’t expect to return from the hospital alive. I’d be a liar if I said I didn’t have those thoughts sometimes, but they have become rare through the years. When I am being admitted for something or in an ER, I shift my focus from my fear of the worst to what I am going to to do when I get out. I plan for my recovery, and I plan to get back to my life. Of course, it has taken me years to get to this point. Perhaps I am overly optimistic because I have lived through so much. I’m not sharing this to tell patients everything I do is right. It’s not. Everything I do is right for me. But I am sharing this because I want patients to know the possibility of surviving the worst. I’ve had well meaning doctors and family tell me to just rest all the time and not do anything I think might be hard. To let people take care of me. And during the really bad progression of the disease, help was necessary. But I always believed their help would be temporary. I’m not telling you to ignore people encouraging you to take care of yourself. I am encouraging you as a patient, to try to do things that challenge you. even if it’s walking. In 1999, I went to Disneyland in a wheelchair, and not just to get to the front of the line. I’ve rented motorized scooters. When I go now, I walk around and wait in line like everyone else. I play at Disneyland, the beach, and anywhere I can. I even tried zip-lining. I said tried. I got the gear on and when I found out there was a rope course, I got the hell outta there. My hands couldn’t take that. But, maybe someday in the distant future they will. Okay, that may be a little pie in the sky. How about being able to open my hand, so that I can finally rub my son’s back with my hand and not my wrist and back side of my fingers. Now that’s a goal I can accomplish. But in order to do anything, I have to believe in the possibility. Of course I’m aware it might not be possible, but I won’t know until I try.
My point is, don’t live like your dying. Sure, jump out of an airplane wearing a parachute, but do it because you want to, not because you got a diagnosis and it’s uncertain you are terminal. Don’t live like you’re dying. It’s foolish. Live like there’s possibility. Look, we’re all going to die sometime. We have no control over that, but don’t give up because you may have to fight hard to live. Because the possibility you won’t die right away, is a very real possibility.
Ever notice things in a photograph, you didn’t see while you were posing for the picture? Here is what I have learned about my own behavior and mental health with a “photograph perspective”.
Finding the right antidepressant is no easy task. So when we find one that does the best job with no side effects, or manageable side effects, it’s like someone threw a dead tree in your path, and the only way is to climb over it. Of course, after taking a medication for years, I don’t always keep up with updates. Every medication is not for everyone. It’s a fact and quite honestly, it seems like common sense, but most of us never read labels. Think about it. Labels are updated as more information becomes available through research. I don’t know if you are like me, but when I pick up a prescription I have been taking for years, I get a ten page document citing possible side effects and risks, and I hand it back to the pharmacy technician, and tell them to shred it. I could wallpaper an entire housing development with all the medication information I have received.
A few days ago, I was reading a blog post about a woman who quit Cymbalta cold turkey. Sure I was a little shocked by someone talking about quitting a medication cold turkey with a possible side effect of suicide for some. But this post by Crystal Lindell about Cymbalta, taught me an important lesson about how I form some opinions. I put down my iPad and started writing about how wrong she was, until I realized I was on a rant. So I went back to her post, and followed links to her referenced prior blogs for more of her experience.
In an earlier post, she talks about how Cymbalta saved her life. You should read it,
Ms. Lindell’s post struck me on a personal level because my depression triggered by the pain and progression of my chronic illnesses changed the chemistry of my brain, and I nearly died. Our experiences had similarities, but they were not the same. I found myself comparing my issues to hers and thinking, “she’s wrong”, when it was I who was wrong. Sometimes, I think I am using empathy, but it’s really not. Instead of imagining what it would be like for them, I imagine what their experience would be like for me. Yep, that sounds about right. I make it all about me. It kind of reminds me of “Do unto others, as you would have done to you.” But most of the time, what might be right for me, would not be right for others.
I’m not sure if it’s because I am selfish. For years, I have had to advocate for myself as a woman in a health care system designed for men (Veterans Healthcare) with two rare progressive, degenerative and potentially fatal conditions. I realized I might be too self focused the day I brought my newborn son to his first pediatrician visit. His doctor asked for my son’s medical history and out of sheer habit, I rattled off my own medical history. It wasn’t that I put myself before my kid, it was just that answering that question had become so routine for me, I had an automated response.
I talk about it in a prior blog post. and since seeking treatment for depression in 2000, I have changed medications many times. There were medications that put me to sleep, some that killed my libido and I have skipped doses of Cymbalta waiting for my prescription to arrive by mail and I can say that having sex during that time is pretty good, sex. But taking myself off medication that did not reduce my libido, but my libido increased without them, was not worth risking my mental health. Luckily, thanks to age and wisdom I know that if I have amazing sex once, it can happen again. So I need to train my brain, so to speak. Our mental state affects our sex. The actual sex organ is our brains. I know it doesn’t seem like that, but the response to it, is made by neural transmitters, nerves and hormones. Look, if a medication completely shuts off your libido, like Paxil did to me, it was the right decision for me, to change meds. For me, Cymbalta had some side effects, but they were solvable with the addition of Welbutrin and training my brain. The cool thing about that, is you can always find a willing participant (in the name of science, of course) to experiment with sex by trial and error. And as the brilliant Amy Schumer put so eloquently, “…I can catch a dick whenever I want.”
For me, going off Cymbalta was not an option. I did it for two months. I handled the brain zaps and withdrawls with a little help from sedatives and pain meds prescribed by my doctor. I was closely supervised by my psychiatrist and General Practitioner. After two months, the symptoms of my depression came back. Lucky for me, I have a support system in place to check my depression.
When there is a change in my medication, or a potential trigger, I reach out to three people I would trust with my life, and ask them to watch for symptoms. They don’t watch over me 24/7. But they check in with me and ask me about triggers.
Triggers and Symptoms
I am diagnosed with Major Depression and Anxiety Disorder. I’ve had years of therapy to determine my triggers, like specific people or events. The people or events can be present, noticed and experienced without going into depression, but symptoms can be triggered by these events and or individuals. Individuals do not trigger things on purpose, but we all have friends or family who bring us stress with their behaviors or conversations. I had to learn to recognize the symptoms of the beginning of my triggered depression. One of them I did not identify until 2004. It was just after my son was born. I was driving home with my sister in-law and my nephews and I had to drive on an overpass. If you’re a southern California resident, it’s the one that takes you from the 91 east to the 15. I was about to drive onto the ramp and I felt a nearly crippling fear of going on to the over pass, but because I had people in the car and it was in the middle of the night, I slowed down and drove extra careful. I calmed down as soon as I was on the 15. I had recognized this feeling before, but my fear was so intense, I knew I needed help. I spoke to my therapist, and sure enough, an extreme fear of going over bridges is actually a thing. The depression had affected my “fight or flight” response by making it sensitive to activities.
Unlike Ms. Lindell, Cymbalta does not kill my creativity or sex drive. I guess I’m just lucky. Not every medication is for every one and not every pharmaceutical company labels their medication as accurate as they should be, I have been on perhaps a dozen antidepressants in the past fifteen years. There were some that gave me no sex drive, there are some that put me to sleep. Right now, I’m on Cymbalta & Wellbutrin, with no sedatives. I have some, but I don’t take them. I guess it’s comforting to know they are there. And I have to agree with Ms. Lindell that exercise is the best medicine for my pain. But to battle my depression without meds, I need to do at least ninety minutes of cardio twice a day to keep me from falling into the abyss. So exercise once a day and meds is a good mix for me. Cymbalta may not work for millions of other people, but right now, it works for me. And when Cymbalta stops working, I will tell my support system what’s up. I don’t need to be watched like I’m under house arrest. But by letting my friends know, they are more likely to answer my phone calls when they are busy, or return my call immediately if they miss it. There’s nothing wrong with having a plan.
About the good sex: Well, I went from having no interest in sex because of my meds, to finding the right med that would allow me to feel like I might be interested. It took changing medication, yoga and exercise that helped and now my sex life is pretty damn good. Like anything, it’s trial and error, having a good team of doctors ad having a willing participant to help with training your brain.
As for quitting any antidepressant cold turkey, I would not encourage anyone to do that without a doctor’s supervision and a group that will help observe your progress. You don’t need to make a big deal of it. Take three people and use them. I never use only once person,because one observation, could be the wrong observation and two others can help counter the error. One way to think of it is, when you are getting your picture taken, you really don’t know what’s going to show up in the photograph, until you can look at the picture itself. Those three friends of mine help me identify what I can’t see while I am present in the “picture taking”. It never hurts to have an extra set or two of helpful eyes.
Scleroderma is an autoimmune disease. Healthy cells are mistaken for unhealthy ones, and the body attacks itself. Not only is scleroderma a difficult name to remember, it is also a Greek word that means: hard skin. Because of the name, people mistake scleroderma for a skin condition.
When a doctor told a patient that he or she had scleroderma, it was usually followed by a statement like: Get you’re things in order, you don’t have long. For a long time, that was true. Now, thanks to research, there are treatments available to help patients survive the progression of scleroderma by treating a patient’s symptoms. Scleroderma is different with every patient. Some have Diffuse Scleroderma or the “fast and furious killer”, or Limited Scleroderma, which progresses slowly and in spurts. Many patients die of complications of this type. Then, there is the overlap kind. In addition to scleroderma, a patient can have another autoimmune disease like Lupus, Fibromyalgia and any of the dozens of other autoimmune diseases that manifest slowly. Often not receiving the proper diagnosis because symptoms have not yet appeared, or the patient’s medical team does not know enough about autoimmune diseases to diagnose properly. Often resulting in the Limbo of illness: Mixed Connective Tissue Disease, or MCTD.
I was diagnosed in 1994, at the Madison Veteran’s Hospital. The Veteran’s Healthcare System was originally designed for aging men. So not only did my medical team have limited research about scleroderma at the time, I was a woman and they really had to work hard to make changes to accommodate my treatment. They did not know I should have immediately been placed in an occupational therapy program to prevent my hands from becoming severely damaged and impaired. They did not know to inform me about symptoms and warning to watch for, so I didn’t have to loose part of my thumb. They didn’t know that my additional symptoms were really sarcoidosis, and not scleroderma symptoms, proven by an outside provider after taking months of ER chest CT scans to UCLA’s pulmonology department, three hours away paid for out of my own pocket and private insurance I could only receive at the time because my husband and I owned a small business, and as an employee could not be turned down because of pre-existing conditions. Yes, many people I met in the 1990’s are surprised to still see me alive.
Now that denying insurance coverage because of pre-existing conditions is now against the law, patients with scleroderma are receiving life-saving and life-extending treatment, but many patients in areas that are not near a major city like Los Angeles, Chicago and Minneapolis, patients are still getting misdiagnosed and dying because of it. How do we solve this problem? With medical provider education and patient education. Of course, money is the biggest help because that funds research and treatment. All of these things are happening, but we can do so much more. Scleroderma needs better marketing.
T-shirts and teal bracelets are not enough. A pretty color, a shirt and accessories is not enough. Scleroderma needs a new name and I have the perfect name. One that embodies the surprise of the uncommon scleroderma symptoms. A name that expresses the pure frustration of scleroderma patients, in addition to the terror they feel when they experience trouble doing something we all do without thinking; like swallowing and breathing. I think you will agree this name, fits.
Scleroderma needs to be renamed, “Whisky-Tango-Foxtrot”.
It’s easier to say, easier to remember and let’s face it, you can’t forget it. It’s obvious why, but I’ll explain it in one simple sentence. It’s easier to Tango or Foxtrot after some whiskey. (By the way, did you know there are two ways to spell whisky?) Not everyone likes whiskey, but who doesn’t like dancing, or watching someone dance? See how easy that is? Whiskey Tango Foxtrot. Rolls right off the tongue. So let’s not just raise awareness, let’s educate and get the word out about this debilitating, progressive and degenerative disease called scleroderma and rename it Whiskey Tango Foxtrot. Because I know when I first heard the word scleroderma the first thing I said was, “sclero-what?”. End sclero-what today, because the best way I know how to express what scleroderma has made me think of the most is, “WTF?”
As a scleroderma patient, there are things I cannot control, but as a strong-willed control freak, I happily manage to control a thing or three.
Recently, Facebook banned a photo of a woman with scleroderma, next to another scleroderma patient who did not look like she had scleroderma. She did it to show just how different scleroderma affects each and every patient. Since Facebook banned the pictures, she has encouraged scleroderma patients to share pictures without make-up. I love this. It’s a bold step into the limelight for many patients who wear make-up and long sleeves to avoid the stares from strangers. After twenty years of hiding changes to my body, I am not ready to step into the patient limelight. Why? Am I chicken-sh*t? Not necessarily. Hear me out…
I admire patients who step out into public with their teal shirts answer questions and enduring the stares. It’s not that I don’t want to talk about it and educate others about scleroderma and what they can do, because I’ve been doing it for twenty years. I just want to do it in controlled settings. For example, I won’t leave my apartment without wearing make-up, and something with sleeves that will minimize the appearance of my hands. No, it is not because I’m ashamed. It is because I don’t want to be stared at, or begin talking to strangers about my very personal medical care. In the 1990’s I would tell people about scleroderma to anyone who would listen. I would show them my hands, explain my care if they asked about it. I guess in a way, I am burned out on the person to person explanation of what I have, what I do and how I cope. Now, I have a blog with years of my personal experiences. Anyone can access it. Of course I want to meet new people, but not to talk about a medical condition that has caused me to spend years of my life dealing with my medical treatment.
Let me put it another way; taking care of my health is my job. It’s my forty-plus hour a week job. For those of you that work forty hours a week, would you like to discuss what you do every time you go to the grocery store? Look, I know scleroderma patients need awareness. I just choose to do it my way with the written words of my blog, and getting out and doing things not related to scleroderma.
At first, I thought I was a coward. Why hide? Why won’t I step into the limelight and show the damage sceroderma has done to my hands and face? Some of you who follow my blog are familiar with my “vanity”. I place vanity in quotations, because what some perceive my actions as vain, is not. Do you want to know why I refuse to be photographed without make-up and un-tag myself or ask to have my picture taken down for reasons only I understand? Because I do not want to be remembered for having scleroderma. I know, it doesn’t sound nice, but it’s my truth. I’m not making excuses, I’m sharing because I can’t be the only scleroderma patient who feels this way. When I die in fifty years of old-age, I do not want to be memorialized on a website that talks about my fight against scleroderma. I want to be remembered for my sense of humor and my amazing son who will grow up to do things to make the world a better place.. When I die, I do not want anyone to say, “we lost another sclero-warrior”; Or that I’m now a “sclero-angel”. I just don’t.
Is this a severe case of denial? Am I oblivious to the possibility that the progressive, degenerative course of sarcoidosis I have in addition to the scleroderma? I’m not oblivious to it. I just don’t care to think about it. Not because I have a choice not to think about it. With every doctor’s visit I think about the fibrosis and granulomas, plotting to kill or disable me. When I don’t need to be focused on it, I just don’t.
And there’s the argument that, “Karen, the pain of scleroderma doesn’t allow many patients not to think about it.”
Yes, that’s true. I have experienced days and weeks at a time where I was in constant pain as my body hardened. I used to ask for it to stop, until there came a point in my progression that in order for scleroderma to stop, I would need to die. I just accepted that scleroderma would stop when I die. Then, I tried to figure out how to live while this was happening.
Right now, I have a stable prognosis. At one time, we thought scleroderma may have run it’s course, but it hasn’t. It’s going, and right now, it’s not going to kill me. So right now, I have to live. And yes, I want to blend and be not all about scleroderma all the time. I realized I needed to control how I share my experiences when a woman with damage to her hands by rheumatoid arthritis cornered me at The Comedy Store and fondled my hands in disbelief and crying while I politely tried to squirm away from her. Just because I share my story does not mean I have to stand there while someone looks at me and cries. I am not there to comfort them and tell them everything is going to be alright. I cannot be expected to do that, unless I am in a setting that gives permission to that. That includes comedy clubs, Starbucks grocery stores and anyplace I happen to be. I cannot tell other people I suffer, because I have the luxury of convincing myself that I do not suffer. Honestly, I don’t believe I’m suffering. There are times I do suffer, but the word suffering implies that I am constantly suffering. I get frustrated often. Sometimes, I’m in pain, but I cannot say to anyone that “I suffer from scleroderma”. When I hear that phrase, I hear, “scleroderma runs your life”. Yeah, in some ways it does, but I refuse to grant scleroderma that power in words and deeds.
Is that denial? No, it is not. I used to think I was in deep denial, but it is acceptance. That’s it. I control what I can. If I want to get up in the morning and go get coffee, it takes me 120 seconds to slap on some make-up before I step out the door. Not because I’m ashamed, but because I don’t want to draw attention to myself. Of course people shouldn’t stare, but they do. Not because they are a***oles, but because they are human. One reason human beings are here today is because of our pattern recognition. When we see something that falls out of the patterns we are used to, we are naturally curious, and curiosity results in stares and questions. Kind of in the way a celebrity will wear sunglasses or a hat. They just want to get a cup of coffee, and relax. So, if you’re a patient who doesn’t wish to be called a sclero-warrior and be referred to as a sclero-angel after death, that’s okay. Not because I say so. It just is. We don’t have to wear teal, or those damned bracelets of any color. We can educate people how we wish to, and not have to be thought of as suffering, or as heroic. Living with a chronic illness does not make us heroes. Living with a chronic illness just makes us not dead. How we choose to cope with it is our business. We don’t have an obligation to walk around like teal billboards, unless we wish to. And it we don’t wish to, that’s okay. Because those who do, are no better or stronger than we are. The just cope and share differently. Of course its admirable, but I refuse to feel badly because I don’t share 24/7. I do what I can. Some do more, some do less, but we all do what we can.
Some of you may already know I started doing stand-up comedy in 2013. When I began, I did not want to be the #scleroderma comedian; but because it’s a big part of my story, I have to talk about it the only way I know how, by making fun of it. And honestly, my adventures in veteran’s hospitals, medical facilities and dating provides a ton of original material. But I still do not want to be the scleroderma comedian, and that is possible. Because within these adventures, are stories everyone can relate to in relationships, rejection, disappointment and hope. So, that’s my story.
This weekend, is the Scleroderma Education Conference in Tennessee. I’m creating memes based on things I’ve said over the past 20 years. I normally don’t upload a bunch of pics to Instagram at once, but with the conference, it seems like a good time to post some. You can find them on Instagram @karenOvasquez. I will be posting dates of upcoming shows on my comedian page on Facebook. My humor is PG-13, so except for instgram I keep the blog and comedy seperate.
I have been posting here about once a month. There are so many great scleroderma blogs out there, check out my blogroll for the ones I follow.
About the tag #LaughAtWhatScaresYou it’s just that: Something that breaks the tension when things seem scary or a great way to teach others. It’s something for not just #scleroderma & #sarcoidosis patients to share. It’s for everyone to share. Don’t worry, I won’t be starting a foundation or patient group. There are plenty to choose from and I’m not into commitment.
So please, follow the links and check out the tags. Share what you feel is worthy.
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.
If you are “lucky” enough to have the kind of scleroderma that progresses quickly
Well, at least I think I don’t look sick, or like I have scleroderma.
I read my dear friend Chris Dean’s blog this morning and I was so excited to read she was trying out products. I told her so, and she encouraged me to post about my make-up tips. In the past fifteen years, I have spent thousands of dollars on products I have thrown away. I finally got wise to return policies. That helps, but nothing- I mean NOTHING works as well as samples and trying it out yourself. Well, except someone who is trying products and posting pictures without make-up. My friend Chris is doing this. She looks beautiful with and without make-up. I thought about posting my before and after, and I won’t. It’s not that I don’t have the self esteem. I do. I just hate seeing myself in pictures without make-up.
Before 1996, I never wore foundation. Just eye shadow, blush, eyeliner, mascara and lip gloss. Okay, maybe mascara if it were a special occasion. Now, I set aside at least thirty minutes every day, to cover the damage from scleroderma. My lips have become smaller, thanks to my scleroderma face-lift. (That’s the scleroderma free gift with purchase.) And now that I have decided to pursue writing and stand-up comedy, I have found a way to get big lashes, without wearing fake ones.
I don’t think I was “the hot chick”, but I did once cause an accident while in my bikini walking to the bus stop on PCH in Huntington Beach. before scleroderma, I didn’t mind posing for pictures, I would even photobomb. Then, scleroderma struck. My face began to change. I began to notice this change in 1996, and that is when I began my search for a long lasting foundation.
My pigment began to be darker in some places, and lighter in others. I’m Italian and Spanish, so I can tan. Then I began to tan on parts of my face, and hands. The way it looked reminded me of an animal print. Leopard, to be specific. At the time, I worked in the shoe department in a large department store in La Crosse, Wisconsin. I had a friend at the Estee Lauder counter. My sister, worked at Clinique in South Bend. So, luckily, I had a lot of help. This was before Estee Lauder’s Double Wear. Their foundation worked well for my skin, but it did not stay on as long as I needed. Then, thanks to my sister, I found Clinique’s Work Out Make-Up foundation. They have a comparable formula now, At the time, I had no broken blood vessel damage. It was simply a pigment issue.
My biggest problem with make-up wasn’t which formula I could use. It was how I applied it. At the time, I had ulcers on six finger tips. I could not use my finger tips. to apply foundation evenly. I didn’t really master brushes with liquid make-up, until recently, so I used make-up sponges. They were fabulous! The only problem was, they were disposable, and they sucked up product. So not only was I spending even more on foundation, I was creating waste. There has to be at least one landfill of sponges that were mine. Just another lane on my highway to hell.
Finally, I figured out that concealer as foundation, in some cases, works best for me. It gives the coverage I need on darker spots, and I can make my face lighter or darker with power foundation and bronze. But it still had it’s problems. I hadn’t considered photographs.
In 1998, I was married. Most of the wedding pictures taken with personal cameras turned out great. Then we picked up wedding album from the photographer. No one really thought of it as a flaw I guess, but me. The kind of make-up I used, picked up the light from flashes. I had that mask look in many of the pictures. I guess the photographer thought that was how I looked? No, the truth was, I did not see me, when I looked at my pictures and cried in the car. I saw someone with scleroderma and I wanted nothing to do with it. That’s a whole other post, let’s get back to the make-up, because there is a fix for that.
When I don’t wear make-up, I look very sick. I have telangectasia damage all over my face, and my pigment is very inconsistent. The only time I don’t wear make-up, is if I am going to the emergency room. Because I look like I have broken out with something, and it moves things along faster. I have gone to the doctor for check-ups, routine check-ups with nothing wrong feeling great and if I’m not wearing make-up, I get comments about how sick I look. I could be in yoga pants, bouncing off the walls with happiness after a hike, but if I’m not in make-up, I get comments like, “Oh you poor thing”, etc…
So, thanks to the help I get at Sephora and their amazing staff, (Hello both Temecula locations and JC Penny Glendale!) I have found a few things that have worked for me. I need to switch foundations when my skin is dryer, but I’m going to tell you what I’m using right now. Again, you can probably find less expensive alternatives if you can use your fingertips for application. I took these products right out of the drawer in my bathroom.
Karen’s Foundation Routine
- Kat Von D Lock-it Featherweight Primer. After moisturizing, I put this on before applying my eye-make up. It gives the primer time to set up. Unlike eye make-up primer, foundation primer needs to sit. It takes me about 15 minutes to do my eyes on a night I have a show. So a minute or two to set is fine. If I don’t use primer with any foundation, it doesn’t last as long. I also notice I use less foundation. I do apply this with the side of my fingers because it doesn’t need to be layered and buffed like foundation.
- Make-up Forever. I just switched to this one week ago. I was wearing Kat Von D’s concealer, medium 24. I just preferred the concealer color to Kat Von D’s Foundation (liquid) that matched my tone. I switched to Make-up Forever. The color match was better for me. Both formulas are easy to work with. Kat Von D is famous for tattoo cover up. That stuff works. Yes, I don’t change primers when I switch foundations. You don’ t have to buy a whole new bottle. I’m sticking with Kat Von D. I always keep Smashbox’s green primer if I run out of primer. Not because I love Smashbox. It’s because I bought it, I wasn’t crazy about it and I bought it from Ulta and I lost the receipt. It’s great to use if I run out of primer as my back-up. What matters most, is what helps you, not me. I’m probably belaboring this point. I’m fiercely loyal when I find products and if I like working with the people who sell them. For full disclosure, I drive 87 miles, one way to get my hair done. It’s absolutely worth it to me. Shop where you feel is best for you, and worth your time.
Okay, back to my routine:
I apply my foundation with Sephora’s #45 brush. It used to be called “Mineral Powder” and something in French. Someone figured out that it can apply heavy and buff out well for even coverage. (I figured it out first.) Because the red is so dark, it takes layers of foundation, with this brush, I can do it in one layer.
- Kat Von D’s Medium 52 Foundation Powder. I love this stuff. If I didn’t need to layer so much, I would just wear this. I do a light dusting over my foundation. I use Sephora’s #55 brush. I would love to have one of Kat Von D’s Brushes, but I already had these and buying another brush was not in the budget.
- Nars Bronzer. I just love Nars colors and quality. I use it as a blush and bronzer. I also apply this to my neck and up my chin line to even get rid of that pesky chin line. My bronzer is ver close to my natural all-over skin tone. Not everyone needs it. If you don;t use bronzer, be sure to smooth out that chin line with a powder.
- Kat Von D’s Lock N Load Makeup Setting Mist. This stuff is the shiznit. I set my layers with this, then let it dry. I keep it in my purse in to prevent my skin from drying out during the day. My skin is dry, and if I’m at event where there will be photographs, I wear a little heavier concealer. A little spray once during the day, keeps everything set.
I hope that was helpful. Questions? Post them in the comments.
There were 27 diseases that had an awareness month in May. There are 13 in June on the list, but there are at least three missing that I know about. Truth is, there are not enough colors to represent the amount of diseases that need cures. In July, scleroderma patients will watch the T-shirt colors change like the leaves in autumn.
Every store I go to, asks if I would like to make a donation to whatever cause they are fundraising. Their causes are no less valid, but like many, I decline donating with a guilty tone in my voice.
People will say things to me like, “I could never be as strong as you are.”, about how I deal with obstacles they can only imagine. We all have obstacles to overcome. They are as different as night and day, but they are obstacles. Of course people are as strong as I am. Maybe they have not yet been tested, or maybe their coping skills are much different, but there is no “better”.
It has been said to me that, “at least you don’t have cancer.” Maybe. Maybe not. There are treatments for cancer that are already mainstream. There are an increasing number of options for Scleroderma treatment, but like many illnesses, things are tried based on how they work with other illnesses. For example: Most scleroderma treatment suppresses the immune system, to slow down progression, called immunosuppression. The medications used for immunosuppression are also used in treatment of cancer and organ transplant recipients.
You and I are both aware of scleroderma. It’s not enough to wear teal and do a fundraiser, but it helps. Non-profit organizations that conduct research compete with other non-profits. Not out right, but think about it; they are competing. People donate money to a campaign they care about. If it’s not someone they love, those organizations have to advertise to get donations. It’s not good or bad, it just is. I am more likely to donate to scleroderma research than cancer. I am also more likely to donate to The March of Dimes, because their work directly effected the outcome of my pregnancy and saved the life of my son and I. Just like everyone else, I donate to causes that matter to me. Yet I can still become absolutely furious in October because the world turns pink. The money used for merchandise could be put towards research and assistant programs. But without merchandise, people won’t donate. We like to feel good about doing something, and nothing seems to make us feel better than wearing something that tells the world we did something. I do it. You do it. It’s very American.
Now, after 21 years since my initial diagnosis, and 25 years after onset of symptoms, I’m still here. My hands have contracted, I’ve lost range of motion in parts of my body and my lungs are scarred. I’m still here, and functioning very well. As irritated as I get about merchandise, I would not be here. That merchandise has funded research that has saved my life and will save the lives of many more. I am taking medications now, that had I been diagnosed today, would have saved my hands, or at least the tissue that was destroyed by severe raynaud’s phenomenon. I hate awareness, but without it, I’d be dead. Awareness inspires action. Please do something this month to teach others about scleroderma. Thank you. -K