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
Yes. Scleroderma does do ugly things to beautiful people, and me, too.
When I began this blog, my intention was to raise awareness of scleroderma. I’m going on my sixth year with this blog, and awareness is not enough. The truth is, scleroderma is an ugly disease. It doesn’t directly affect breasts, and the damage done by scleroderma is shocking to those who are completely unaware. I know, no one wants to hear that people aren’t paying attention because there is no high-level celebrity that has it, except Queen Latifah’s mom. Here are some things not being covered, even by foundations. Not because they don’t want to, but because they are too busy researching and assisting patients and their families.
There are so many things that bother me about awareness campaigns. First, small independent patient communities, not affiliated with research or patient advocacy, raising money for swag to fund their advertising which includes a bunch of prayers and stupid bracelets. I’ve had scleroderma for twenty-one years and not once has a stupid bracelet made me feel better. How about skipping the middle man and sending that two bucks you paid to look like you made a donation or care about scleroderma, directly to research or patient advocacy. Or maybe something like a scleroderma patient’s cleaning service.
Unless you are dying or rich, scleroderma patients do not qualify for cleaning services, without having a home health nurse. Don’t get me wrong, many patients need full time care. But for those who don’t, like me, the last thing I want in my house is someone dressed like a nurse, who has to stay for three hours twice a week, cleans my house half-assed because she’s there for healthcare and of course hear about all her personal problems (I’ve had this done with three “helpers”.) The last time, when I was released from the hospital after forty-five days last year, the VA granted a home health care assistant. Eventually,I had to schedule myself to be home three hours, twice a week so she could help me clean. Of course, she was there for healthcare so getting her to clean was like pulling teeth, so that didn’t last long and I resumed my own cleaning. All I needed was someone to come by once a week for an hour and a half and do the heavy cleaning in my house, then get the f*ck out. I didn’t need companionship, help dressing, eating, bathing, even though I had to stay off my foot. Just clean the bathroom, kitchen floors, change my sheets, not even do laundry. But no, the VA doesn’t do that. Everyone is so busy looking for fraud, that people who could use a little help now and then have to wait until they are injured, or worse.
And then there are people who tell me, “ask your family to help.” First of all, I live near none of my family. I live near a health care facility qualified to take care of my medical needs. Also, that would require me to live near my family. One family member even told me I should try assisted living. I get home from comedy clubs at two or three in the morning, and I drive myself. Look I may have stayed in the hospital forty-five days, but I did not go without a booty call. I had two during my stay. I got away with it in a hospital, because nursing stations are busy at shift change, but in assisted living, someone’s going to notice my room mate sitting in a wheelchair outside my room for at least an hour to get the return value on that Brazillian I pay for every month.
I’ve done my time laying around in pain waiting for medications to be developed to cure scleroderma and sarcoidosis. The diseases have run their course. My lungs are scarred, I have lost mobility in my hands and I still deal with chronic pain. For me, the worst is over. I no longer wish to raise awareness of scleroderma. I want to make patients aware that if they can just keep fighting, and remember to start fighting again when giving up (I’ve given up plenty of times), that there can be life with scleroderma. Right now, you might be fighting to breathe. There is a chance you can make it through this, and if you do, there is so much life to live. Look, there will always be a time when our bodies will tell us we are ready to move on, that it is time to not give up, but accept that it’s time to leave this life behind, scleroderma or not. For those patients out there wondering how they can live with the damage, it can be done. It will take work, there will be disappointment and there will be some success.
The only thing I hate more than having scleroderma, is when someone tells me they are sorry. I know people don’ really know how to react, and maybe patients appreciate it when hear someone is sorry they have scleroderma, but not me. It doesn’t anger me, it enrages me. It’s not that I don’t appreciate them feeling something, but sympathy? I’m not dead yet, Mother F*cker! And it usually in a doctor’s office where I am trying to get routine care so I can maintain my health. I don’t want sympathy from a healthcare provider. How about some empowerment with care that encourages me to be active? Luckily, I get that at The West Los Angeles VA Hospital. I also got it at Loma Linda. Long Beach sucked. (That’s my review of those three hospitals.)
So that is my ugly, honest rant. It’s how I really feel about fundraiser drives to support advertising and teal-wearing and showing pictures people without scleroderma will scroll past on Facebook because it is so shocking. Hell, I scroll past a picture of a scleroderma patient clearly suffering. It sucks. Not as much as having the scleroderma, but it’s definitly hurting the fundraising. Save the Tatas, raises money because people love to see boobs. Groups who post the worst and seek sympathy, shock people away from learning about scleroderma, because to someone who doesn’t have it, it’s hard to see. I know, it’s not what any of us wants to hear, but does that make it any less true?
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.
To learn more about scleroderma:
NIHS: Facts about scleroderma.
Scleroderma Research Foundation, a partner of The Scleroderma Project
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.
Douchebag: (Doo-sh-bag) n. One who works to outlaw safe medical procedures for women while insisting vaccines should be optional.
Use in a sentence: Sean Hannity should visit countries where vaccinations are rare and see what the measles do without treatment or prevention. Sean Hannity is a Douchebag.
The term Pro-Life, is a like a dog whistle, but instead of sound, the Pro-Life Whistle uses identity. Those who identify themselves as Pro-Life, hear the words, ‘Pro-Life” and start arguing against any idea that suggests women who have abortions are not cold-hearted baby killers. We who have have had abortions are not cold-hearted baby killers. We don’t wake up and decide to go have an abortion to earn points on a punch card to receive a free one on the eleventh visit. Abortion is a medical procedure. And for many women, it is the dreaded choice after exhausting every option to have a healthy baby, or save our own lives so we do not orphan the babies we already have. Also there’s a choice we make to have an abortion because it is what is best for the person making the choice.
As someone who has terminated a pregnancy, I speak from experience. It is absolutely none of your business why I had an abortion. I’m really only admitting it because we are still fighting to keep it legal for 40+ years. That, and I don’t give a rat’s ass what you think of me because I decided to do so. I will give you a hint: My birth control failed, there was no Plan B option at the time, I was in my 20’s and it had nothing to do with saving my life. I have heard people say things like, “Women use abortion instead of birth control.” In my 44 years, I have met only one woman who does not use contraception of any kind and has no qualms about terminating a pregnancy if one happens through carelessness. This does not make me an expert on abortions, but that does tell me how few people I have experienced on my path, who have done that, and that is her right. I don’t have to agree or disagree with anyone when it comes to their own body. The people who will pay the cost of restricting rights to safe and legal rare procedures, are all women.
If you don’t believe in abortion for any reason, then don’t have one. Please stop spouting misinformation and harassing women who are forced into situations you cannot possible imagine. Please get out of our ovaries and do something that will actually help children; like funding free lunch programs, free day care or preschool programs, and domestic violence treatment and prevention. Don’t hide behind some passage in The Bible and dare to call yourself a Christian, then mandate pain and suffering onto fellow humans. Yes, I have terminated a pregnancy, long before I even had scleroderma. If I were to get pregnant today, I would terminate the pregnancy because I will most likely die, and honestly, even if new information came about that revealed I would be fine, I’d still terminate the pregnancy. I don’t have to justify it. I can’t rely on oral birth control due to high blood pressure likelihood, and risk of stroke. I cannot risk an invasive sterilization procedure because my body destroys its own cells. I must rely on a thin piece of rubber and if that breaks, I have Plan B to keep a potentially fertilized egg from implanting itself into the lining of my uterus. It’s my body. How dare you judge me for decisions I make regarding my own well being. If you get pregnant, do what you feel is right. Stop trying to regulate my ovaries and uterus and proclaim vaccination should be a choice. T here are diseases that are killing people who are suffering and in great pain. Doing something to help those in need of a cure, and need assistance while waiting. Stop obsessing over zygotes and fetuses. Take care of those who are out of the womb. Stop calling sick people lazy and vilifying the poor. Stop watching Fox News, and pick up a book. Don’t regulate my ovaries and proclaim vaccinations should be a choice.
Okay, maybe not ever. But how about the best description of living with a chronic illness that you will read for the next fifteen minutes?
Are you healthy? Have you ever wondered what it is like living with a chronic illness like scleroderma? Watch the movie Ground Hog Day.
It’s no secret I believe Harold Ramis was brilliant, But I never really knew how brilliant, until I watched Ground Hog with my ten year old son. Bill Murray’s character, Phil was having his worst day ever, over and over. Things eventually got better for Phil, but not until he figured out how to be happy, no matter what his circumstances. (Yeah, I know it’s an old movie and you probably got this message back in the 1990’s, but this is still new to me. So please humor me and read on.)
I can’t speak for everyone with a chronic illness, just me, and for me, it has been Ground Hog Day since 1994. Every day, I wake up feeling okay, then I try to use my hands, or I get another weird diagnosis, or I am forced to train another doctor. Providing me plenty of food to nurture that garden of resentment and anger I tend in my heart.
Let’s be honest, I’m a bitch.
Like Phil, I do not want to make friends with people who I do not wish to relate to, like other patients with scleroderma. There, I said it. I don’t want to get together with other patients who have scleroderma simply because we have scleroderma. I would love to get together with other patients who have scleroderma and go to a movie, hiking or a root canal. Anything but talking about living with scleroderma. And yet here I am writing about how I hate talking about scleroderma while I’m talking about having scleroderma. You see, it’s not really about the other people in my life. I just don’t like being in this situation.
Like Phil, I had to stop and be present in my environment, find something I enjoy and then do it. My problem was that I hated my environment so much, I wouldn’t stick around. Have you noticed I have been moving every single year since 2009? My family has, and I just got the memo. I’m running from something. But this year, I decided to stop running. hen I watched Ground Hog Day for the 5oth time and related. I still haven’t figured it all out yet. But I have figured out I too could be that “nice young man from the motor club.” I’m just not there yet. And that’s cool too. Or maybe I am there and I don’t know it.
I can fight situations all we want. But then the time comes when I need to stop driving angry, and today will be tomorrow. Confused? Me too. So, why not curl up on the couch and watch a classic Harold Ramis movie. it makes everything better. Have some popcorn, and don’t be stingy with the butter.
It’s not my strength in spirit, or desire to help others that has kept me alive far longer than many expected. I am stubborn and I refuse to accept my limitations because I have no patience for assistive devices that move like molasses. Yes, I do realize how childish that sounds after typing it, but I’m okay with it. When I had to stay off of my foot for forty-five days, I used scooter at Target. I picked up everything in that stupid front basket and limped to the cash register, and I still moved faster than that scooter.
People tell me all the time how strong they think I am. They go on about how I continue to live life bravely. I’m not strong. I’m not brave. I am deep in denial, and I want to look good. Does that make me a shallow person? Look deep into my eyes. Aren’t they gorgeous?
Sure, it used to bother me that I can’t wear the four inch heals everyone else gets to wear, then I discovered shorts with Ugg Boots. I know, it sounds weird. And the shorts aren’t even that short. But it’s a great way to keep my body temperature under control, which is important if you have Raynaud’s. And it doesn’t hurt that Ugg Boots look good on me.
The love I feel for my son and the thought of dying too young if scleroderma hardens my body sure is sad, but that’s not motivating enough to get me to exercise. But do you know what is? It is the remote possibility my son might have to see me ride a Rascal Scooter in Target, with an oxygen tank wearing velcro shoes. Sure, I want to be around for my son, but I want to be around for my son and have an ass so perfect, one could bounce a quarter off of it. Is that wrong?
Okay, maybe not the best, but it helps.
I started writing this blog in 2009. If you have been along for the ride, you have seen my writing evolve from sub-par to adequate. Now, I’m doing stand-up comedy and in no way should be promoting it, but I am telling people where I will be performing. Why? Because I talk about scleroderma. I also posted this because I want to show other scleroderma patients there is hope, but you have to fight. I did. And now I have this warped sense of humor. (I had the warped sense of humor before, but now I do it with more words of Latin and Greek origin.)
Look, I never wanted to be a “scleroderma comedian”, but with my hands, it’s really hard not to talk about it. People have questions, and merely my medication gets a laugh because it’s so hard to believe. But this has to start somewhere, and why not with something that creates laughter.
I don’t think having scleroderma is funny. In fact, scleroderma is very scary to patients and those who love them. But the mistakes I have made personally, and ways I cope with it, are funny to me. So, I’m going to get people to laugh, and learn something, as well as show the world that with educated doctors and medical practitioners who will fight along side their patients, patients can survive. Nothing will ever trump a cure, but for now, I’m going to laugh at what scares me.
Thursday, July 10, I will be at Aces in Murrieta, California, for open mic. (Yes, that Murrieta.)
Saturday, July 19, I will be performing at Hot Java’s Deaf Comedy Jam in Long Beach, California.
Or: Please allow me to reintroduce you to my booby.
...Well, it’s not really my booby. It belongs to everyone.
June 24, 2014
I have been keeping this to myself for years and what a better time to talk about my fear of scleroderma during Scleroderma Awareness Month.
After my diagnosis, I wanted nothing to do with scleroderma. I avoided support groups not only because the ones I had been to mostly consisted of grandparents, before my son was born; I did not want to see my future. I did not want to see what happened to long term scleroderma patients. And 20 years later, scleroderma scares the bejesus out of me. I want nothing to do with scleroderma, and I keep on running.
Scleroderma does painful, debilitating and ugly things to patients. And I am so afraid of becoming disfigured, I will do anything in my power to get away from scleroderma-like activities, like asking for help. I work hard to be able to exercise. I sometimes injure myself doing things I prefer to do myself, than have others do for me. Do I need counseling to work through the stages of grief to get to acceptance?
I have never claimed I don’t need psychiatric help, but quite honestly, I don’t want to accept the whole death-by-hardening-connective-tissue that the universe has in store for me. I have accepted parts of the results of scleroderma. Like resting when I need to; spending hours in doctors offices, labs and tests; I have a port-o-cath in my chest, and I wear clothes that show it because I want to be an example for my son; I have moved to be closer to specialists who know what they are doing so I don’t end up dead because of a medical mistake. Yes, that does mean I live away from my son. Right now, I am abusing the English language with punctuation errors. I can’t really blame scleroderma for that, but for our purposes in this post, I’m going to blame scleroderma.
Unless it is medically necessary, I want nothing to do with scleroderma. But this post is not a cry for help. I’m sharing this because of all the crazy things scleroderma has brough into my life, nothing scares me more than Juvenile Scleroderma.
Have you seen what this can do to children? Click this Link Take your time and read about it. Go ahead, we’ll be here when you get back…
Why can’t we do anything to stop this in children? Oh wait, we can. We don’t have a cure yet, but there are organizations who have researchers working on ways to treat it effectively. There are two organizations, one in La Jolla, and the other in Michigan, who have found a way to stop fibrosis and reverse it. There are organizations raising funds for scleroderma research with comedy fundraisers, galas, and walks. there are individuals having bake sales, and it will never be enough until rheumatologists all over the world can recognize early symptoms to give patients a better chance with early diagnosis and treatment; and of course, a cure.
We have a lot of work to do, and I need your help. Please learn about scleroderma please go to an event or make a donation for a cure. It makes me furious that all diseases without effective treatment, must seek funds for research and treatment. There are some pretty horrific ones out there, even more terrifying than scleroderma, but I’m not writing you about those diseases. I want you to know how terrified I am of scleroderma, and even more terrified that people are being diagnosed with it every day, and then must wait to see how exactly scleroderma will change their lives forever. Scleroderma is different for every patient. Symptoms of scleroderma can exist as separate diseases. How messed up is a disease that some components that make it a disease are other diseases?
In order to make my point, I have brought back our pal, Drew, The Blue Footed Booby. He made his debut last year. When you see Drew, please help by sharing his picture and help share the word about scleroderma.
This a follow up to a post I wrote in 2012. I almost started fixing typos, but realized what it really needed, was an update. I have sarcoidosis in addition to scleroderma, but sarcoidosis is contained with medication. There was a great deal of damage done to my body, including my lungs that are scarred, known as pulmonary fibrosis.
After spending 45 days in the hospital to save my foot, I am now faced with the challenge of returning to exercise on a routine basis. As much as I would like to go back to Krav Maga class, this will not be happening anytime in the near future. I blame the horrid infection of my foot on just thinking about training for a 5k. All kidding aside, the infection was bound to occur, but it may have been prevented from such a drastic course with proper shoes. I thought because I was feeling so great, I could take a chance and wear something more stylish. That was my mistake. Now, I have this wonderful reminder to not push that good feeling. Message received, Universe. Message received. (You can’t see this, but I just looked at the sky, raised my hand, and impotently shook my fist in rage.)
Back to one, deep breath
One of my biggest lessons, of many from this past hospital stay is there is no such thing as a last chance for me. I changed my way of thinking of my hospital stays. I have always understood that they will be part of my life, but when I would leave, I would think, “This stay will be the last time.”
This time, I had enough time to realize that there were so many things I could not anticipate, that I cannot think of any time in the hospital as my last time, and my recovery my last chance. Yes, after 20 years I understand that I will get knocked down, but I’ll get up again.
Hope helps, but knowing I’m going to recover helps more, because it’s not a matter of “if” it’s “when” I feel better.
Of course I cannot predict the future, but I can have a positive outlook. Not unrealistic, just more than hopeful. never hope I’m going to get well. I know I am going to get well. And even though we never really “know” everything, it doesn’t hurt to act as if I will have a full recovery. People would say to me “I hope this gets better for you.” My reply was usually, “I know it will get better.”
Positive thinking helps, but I must do the work it requires to get better. There is nothing wrong with being stubborn, and I am living proof.
So, about the exercise…
I’m working with a trainer to build my strength from the inside out. Along with strengthening the large muscles, I must work on the small ones as well, especially my core and upper body. Right now, I am using light weights and rubber bands. These exercises may look small, but I can feel he work I’m doing. The exercises I do are no impact where my feet are concerned, and since I have lots of work to do on my core, there is plenty to keep me busy until I can do a full plank again.
It’s not easy, it probably won’t be the last time I need to restart, but starting again is so worth it.