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.
Like most of my posts, I start with a topic, then go ‘off-road’ with a personal related story and get back on track. I have tried to change that, but this is after all, my blog. Enjoy the crazy!
I hate the documentary called Project Scleroderma: Beneath The Surfce
For the longest time, when I heard the name, my heart would swell with feelings of resentment. I justified these feelings by telling myself this documentary about scleroderma, only showed worst-case scenarios. That people live well with scleroderma if they just stay on top of symptoms. My justification is one big fat lie I tell myself to avoid the reality of what is happening to my body.
Since my diagnosis in 1994, I have said a resounding, “NO”, to scleroderma. My body, my mind and my heart scream “NOT ME”. I am not going to be that club-handed and disfigured patient lying in pain that is the face of scleroderma. I am certainly not scleroderma. The truth is, that is exactly scleroderma and that is something I fight to avoid facing. After more than twenty years of treatment for depression, I have learned there is nothing that will make me face the inevitable hardening of my lungs and eventual death. Hold on, there is one thing that will pull me out of this depression and off of these meds: if it stopped and the damage is reversed. (Hey, a girl can dream.)
I used to lock myself in my bathroom and scream silently, wishing the scleroderma would just stop. Have you ever have those nightmares where you scream and there’s no sound? Yeah, that. Only it’s real. And when the scleroderma stops in reality, I’ll be dead.
Is it so terrible I live in denial that something is grotesquely disfiguring my body as it slowly kills me? No, it’s not terrible at all. (Lala Lala Lala I can’t hear you!) Because that is how I get up every morning. I am always surprised when I see my hands every day. I have to ignore my hands to get out of bed. I can’t accept that God has a plan. Because if God does have a plan, I have nothing kind to say about God.. I joke about making margaritas on the Handbasket to Hell, Because if there is a God, and if we meet, I would try to kill him/her. So I prefer to believe there is no god. It makes the most sense. And if you’d like to tell me that when I am faced with death that I’ll start praying, I will tell you that is bulls&*!. I have nearly died three times that I know of, and been clinically dead once. There is no bright light. And dying is actually quite relaxing when it’s not painful. I speak from experience. You know what terrifies me more than death? Looking sick and in pain. Not the kind of constant chronic pain people with chronic illnesses are forced to suffer because a bunch of non-ill people abuse pain medication. I dread the pain of my body rotting and the feeling of the nerve endings dying. If you have never felt a piece of your own body as it turns black and dies, I don’t recommend it. I was in the hospital with a rotting thumb and nurses refused to contact my doctor as I begged for pain medication. It wasn’t invisible. They could see the necrotic tissue of my thumb die before their eyes. But according to them, I was just being hysterical. They had never heard of such a thing. And I also heard them say that I probably did it to myself to get pain medication. And here are some more of the hits: “Her thumb isn’t rotting off.” and my favorite, “It’s all in her head.” That sore turned gangrenous, then tissue around it started to die. An arteriogram had been done before I went into the hospital and it showed that the arteries to my thumb were completely choked off. My thumb was getting blood back-flowing from the vein. (Who are they going to believe? Their own eyes? Not a chance.)
Oh, and if you are reading this and you are a nurse, I can hear you when you think I can’t. I love nurses, but I have met some real winners.
The funny part of that story, is that was in 1996 at a Veteran’s Hospital. After loosing part of my thumb, my care was transferred to the Madison Veteran’s hospital, where they stepped up and began treating my illness. But of course, the problem of nurses acting above their pay grade still happened recently In 2013, I heard similar statements at the nurse’s station at the Long Beach Veteran’s Hospital in the long term care unit. The only difference is, we can add,”One day she’s going to wake up and not be able to move.”
Because I guess I was not having a reaction from 30 days of morphine, as evidenced by my chart from prior hospital stays when I had a rash, the medication Benedryll was given to me in a higher dose, and the rash was quickly resolved. The “wake up and not move”, were one of many comments of nurses who insisted on their own expertise based on their time working in a glorified nursing home. They were mostly overworked BSN’s who did the jobs of CNA’s. I actually had to teach them how to change the needle on my port-o-cath. When I refused an IV into may arm and after one nurse finally figured out a patient should not be teaching nurse how to do their job, they got someone in to show them. This manager was pretty upset when he found out what was going on. Also, many nurses shared their beliefin the power of prayer. In the beginning, I thanked them for their well wishes, and politely remind them occasionally that I don’t believe in God. One nurse even told me I wasn’t taking good care of myself because I did not believe in God. I do love nurses, but I love freedom from religion more. I have made more than one nurse cry after they have put my life in jeopardy, then I think of nurses who refuse to listen, I have dealt with through the years and my guilt just disappears. I don’t make nurses (and some doctors) cry for my entertainment. It’s usually after they have made a careless mistake, or base my care on their experience with nothing related to the symptoms I have. That and I hate them telling me that God loves me and has a plan, especially after I tell them I am an atheist. It’s so disrespectful. I don’t try to talk them out of their faith. Why do they insist on talking me out of my lack of faith? I guess that’s a whole other post.
Wow. That was a rant. I have left it in so you can get a glimmer of the judgement and doubt by practitioners, family and friends, scleroderma patients get: This post talks about my time after scleroderma was diagnosed. I can’t imagine what it would be like to go years with mysterious symptoms and being told it’s all in my head. Oh wait, I did. Again, whole other post.
I avoid things that point out the reality of scleroderma. It’s what keeps me from drinking my bottle the liquid morphine I keep. Not to kill myself, but for pain. I want to numb myself from feeling everything that has been damaged to my body. Luckily, I love my family and friends and even more, I love myself too much to check out or keep myself over-medicated. (A little narcissism every now and then can be healthy.)
I greatly admire those who lead and participate in support groups. I cope by paying attention to my symptoms as they come, getting treatment and finding things to do that have nothing to do with scleroderma. I don’t participate in support groups. I will assist in raising funds for patient support, I just choose not to get my support from other patients. It’s not because they are fellow patients. It’s because I do not want scleroderma to be the reason we hang out, and our only topic of conversation. You may think that is selfish. Maybe it is. But it’s what works for me. I share stuff in my blog. That’s how I am able to help others. It’s what works for me.
Project Scleroderma is a wonderful project that is going to help present and future scleroderma patients. It’s well made, full of the horrifying reality of what scleroderma does to the human body. And that’s why I can’t watch it, yet.
In 1999, I nearly died of depression. I didn’t realize it, but I had stopped eating. It was triggered by a failed study of treatment. I was forced to see that scleroderma was going to be a long, slow and painful death. It took years of therapy, medication and had a large role in what lead to my divorce. And here I am, still alive.
Yesterday, I hung out with my son and played Smash Brothers on our Wii U. The day before that, we went to Disneyland because we have annual passes. And the day before that, on Valentines Day; my son and I went on a strenuous and beautiful hike in Griffith Park. I have an amazing life that I would not trade for anything. In September, my brother is getting married to an amazing woman I love dearly. And I can’t wait to see my sister, brother in-law and nephew who will be here for the big party. There is nothing that will motivate me more to keep fighting, than the life I have ahead of me. And it won’t be easy. I might get my heat broken a few times. I’m going to have to keep going to auditions after being rejected. After bombing during a set I wll convince myself to listen to the recording of me dying on stage to improve my set. I’m going to have to do the dishes instead of throwing them into the trash. I can drive seventy-five miles one way to pick up my son. The stuff that people worry about- the medical stuff; to me that’s just like brushing my teeth. A trip to the emergency department is just like a trip to the dentist. Having to correct a pharmacist and tell him or her I will not cut my dose of Viagra to save the Veteran’s Administration and in prior cases, insurance companies, money, well that’s just fun. It’s one of those silly, petty things that allows me to feel like I’m in control of something. And of course, I horrify my family sometimes when I use humor to cope with what scares me.
Many of those involved with Project Scleroderma: Beneath The Surface, have witness first hand as their loved one died while they could do nothing. There is nothing anyone can do to stop death, once the symptoms of scleroderma become fatal. Nothing except treat symptoms as they appear and slow progression with immunosuppressants. But times, they are a changin’. (Immunize your damn kids, by the way. Please and we on immunosuppresants thank you.)
Twenty years ago, people diagnosed with scleroderma were told to get their affairs in order and prepare for the worst. Thanks to research that has brought about treatment by non-profit organization. This of course is not a cure, but we’re getting there. Scleroderma is different in every patient. There are amazing treatments available to patients whose doctors know about them. (See the problem there? We need to get the word out.) We need to get doctors educated about scleroerma so they can offer their patients the bet possible outcome, while they wait for a cure.
Honestly, I don’t believe there will even be a cure in my lifetime.
I dare you to prove me wrong. (Seriously. I’m tired of being right most of the time.)
Someday, I will watch the entire Project Scleroderma, documentary. Right now, I am busy coping with the progression and damage scleroderma has done to my body by simply getting out and doing what I want . I usually don’t like to ask others to do what I wouldn’t, but I’ve lived with this for over twenty years. I think I’ve earned a pass. The Scleroderma Project, is a reality I don’t wish to face. I will be forced to face it soon enough when my lungs stop working. For now, I’m going to proof this, maybe do a Brazil Butt-Lift work out. (Just because my hands are messed up, that doesn’t mean I can’t have a fine ass.) Then go on a long hike while listening to Foo Fighters. So while I’m busy living, please watch and recommend Project Scleroderma. Share what you learn, what you have done or what you would like to do, for patients with scleroderma.
If I forgot anyone, please send me a message on Facebook – Karen
And now, a shameless plug:
I’ll be at The World Famous Comedy Store February 25th. Because laughing has only made me stronger. And, I could really use some butts in the seats. Click here and get your tickets at the door. $10.00 two drink minimum. This is up a flight of stairs. Visit my comedian FB page, hit “like” for information about upcoming shows.
I have had many conversations with many doctors about my prognosis and treatment. There are times these conversations are redundant. Not in a bad way, it’s because there are times when there are no changes in my symptoms or blood work, which in my case has usually been a good thing. Why? Well, it means things are not getting worse at that time.
Because I see my specialists four times a year, it means I have many appointments. How many specialists do I have? Well, there’s rhematology, pulmonology, gastroentorology dermatology, podiatry, occupational therapy and psychology- you now to help me manage dealing with all my specialists. Then, there are appointments for tests that these specailists need, to keep up with what my body is doing; pulmonary functions test, twice a year; echo cardiogram once a year; and my personal favorite, an upper endoscopy. That’s where a doctor sticks a camera down my throat. I say that because I usually wake up feeling very happy. The sedatives they use on that test get me a little silly and if I have to have crazy tests, I might as well enjoy a buzz every now and then. Okay, aside from my chronic illness monitoring, there are my regular yearly visits to a primary care physician for regular check-ups, then my OBGYN for my lady-parts. Long story short, I spend a lot of time with doctors, nurses and healthcare providers.
It’s not all that bad. Once, I had a gaggle of test results from the VA Hospital to share wth my doctor at UCLA. I requested and received a disc with those tests, brought my laptop and some snacks to UCLA and spent an hour reviewing the tests with my Rhuematologists. I learned a lot about what the tests meant to my health and my doctor was able to enjoy a snack. (Seriously, if you can, feed your doctor they do back to back appointments all day. It wouldn’t kill you to throw them a snack every now and then. Sometimes, I just grab a candy bar on my way in. But only for your favorite docs. You don’t have to be slutty about it.)
What were we talking about? Oh yeah talking with our doctors. For me, talking with my doctors is easy. If I don’t understand, I ask questions. I have had some weird appointments, but after 2o years of this, they all kind of run together and I just remember ones I learn from. The tough part for me, is repeating what I have learned to my family.
And now, we can get to my favorite question, “So… What did the doctor say?” It feels like a trick question. When asked, I’m not sure what people mean. Do they want to know my blood work numbers? Do they want to know every word that was said? Which doctor?
Yeah, my attitude can be considered somewhat crabby and I wouldn’t be offended if it was thought of as downright bitchy, but I can never give the right answer. The people who ask me that question, love me very much and they want to hear good news. Often, I have nothing new to say from the last appointment. Sometimes I learn something so exciting, I use latin based words. Once an ex-boyfriend replied, “Stop trying to sound like a doctor. You are not that smart.” (Hence the title, “ex”.) Seriously, dating has given me so much material, not about men, but about ignorance, sheer stupidity and downright douche-baggery (thats ignorance with malice), but I digress.
Back to my point: It used to be disappointing to not be able to relay to loved ones that things were not getting better. They were either stable or going in an unknown direction. So many times, the result of my appointments are, “Okay, we know something, let’s see where this something goes.” If I had to hear that about my kid all the time, I’m not sure how I would take it. I believe that if you truly want to torture a person, hurt their child. That’s what chronic illness does to parents of children with a chronic illness- no matter the age of those children.
Because I plan to live at least another fifty years, I had to find a way to make reports about my doctor visits not so uneventful, less uneventful when reporting to family. Everyone needs encouragement, but I didn’t want to do it by providing false hope either, but I accidentally found a way.
I’m not sure when I had this conversation with my mom. I do know it was before my sarcoidosis diagnosis. It went something like this:
Mom, “So…. What did the doctor say?”
There had been no change in anything, so this just sprang from my mouth, “Mom, the doctor said I have scleroderma.”
There was a pause, then my mom started laughing. I was so relived. I found a way to make my mom laugh. Watching my parents worry and wait is not easy, but I have it easy compared to their worry about my health. Making my mom laugh made me feel good. I used the same response on my dad and he laughed.
It wasn’t just making lemonade, it was taking lemons and squeezing lemon juice back at Life’s eye. (By the way, I totally ripped that off from the cartoon, Gumball)