This month we have lost entertainment icons. I listened to David Bowie’s album, Ziggy Stardust and the Spiders from Mars while afloat during Desert Storm, Shield and Watch. When I hear songs by The Eagles, I am flooded with memories of my early childhood summers spent on the beaches of southern California. I have many memories tied to music and I could go on, but that’s a whole other post. I’d like to talk about some things popping up in social media and news regarding Glenn Frey’s medications, and speculation of how it may have contributed to the cause of his death.
Patients like me, with chronic illnesses get mountains of advice from well-meaning friends and family encouraging us to walk away from science-based, researched treatment to more natural alternative treatments. alternative None of us were in the room with Glenn Frey and his family when he made treatment decisions, but chances are they carefully weighed the risks versus benefits. Like many patients, he risked illnesses because of a compromised immune system, and the many variables affecting any illness as it comes up.
My reason for writing this post is my concern about alternative treatment advocates, anti-vaxxers and supplement sales people, will use this press as a selling point for their useless products and sometimes dangerous advice. My message with this post is that there will always be someone selling hope. There will always be risk. Hell, the treatment I’ve been on since 2007, lists Lymphoma as a “side effect”. I get my blood work and monitor my health and continue my treatment because it has increased my mobility, stabilized my lung function and I am living well with my scleroderma. I no longer suffer. I have good and bad days like everyone, but suffering is not my way of life.
I urge patients to do their research. There is no “Google University”, and that many blogs quote other blogs as “proof” of their opinions and suggestions. Don’t listen to the Jenny McCarthys, because they are delusional self-important and ignorant.
Patients have to realistically weight risks versus benefits. Complications from illnesses like scleroderma, sarcoidosis or rheumatoid arthritis can hit us like a freight train, and if we’re not killed, we find ways to jump on and ride out the worst.
This post began as a Facebook post, sharing the Science Babe’s, Slate article about homeopathic medicine. Then, I started talking about my own personal experience with homeopathic treatment for scleroderma, and here we are.
Please enjoy this scenic car ride to my point about my experience using homeopathic medicine.
In 1996, I received homeopathic treatment for scleroderma. If you are considering homeopathic remedies for #scleroderma, #sarcoidosis, a chronic condition, or know someone who is, you may want to keep reading.
I have been there. Having an incurable disease that very few doctors even know about, can feel hopeless. I was there. I was frightened and I needed something to believe. Homeopathic medicine sounded promising. No one else had answers, why not?
In 1996 I worked with one chiropractor using homeopathic treatments. Along with some oral selenium tablets, she had me soak my hands in a solution of what I will call “dead fish powder”. It was made from ground up fish bones and other stuff. Of course, my ulcers became worse. The chiropractor with a PhD in philosophy, told me the swelling meant it was working. According to her, homeopathic medicine makes everything worse before it gets better. It resulted in a MRSA infection that went undiagnosed for nine years. (And a dependence on Oxycodone/paracetamol or (Percocet). But that’s a whole other post.)
By 2005, oozing ulcers had become a normal part of my life. Just another scleroderma complication I had learned to live with. That same year, my raynauds had become so acute, the routine treatment of niphedpine to relax the muscles surrounding the artery to my left thumb. offered no relief. I was instructed by my rheumatologist, to double my dose of niphedipine at home. He did warn I could get a headache, which is short for: Your head will feel like it’s been hit by an RPG shaped like a ball-peen hammer. Doctors use abbreviations all the time.
My pulmonologist suggested Rovatio treatment for my #Raynauds. My doctor wanted to make sure my blood pressure was stable while taking it. There were very few published studies done on raynaud’s patients by 2005. I did not have pulmonary hypertension, so my doctor monitored me 24/7 during the treatment to make sure my blood pressure did not plunge to dangerous levels, causing heart failure. My pulmonologist had me admitted me to the cardiac wing of UCLA, and by cardiac wing, I mean The David Geffen one you have heard about. I was going to be a case study for raynauds treatment protocols. (Oh, if I had a dine for every doctor who said he or she was going to put me in a medical journal…) The patient across the hall had an artificial heart he carried with him in a suitcase while he waited for a donor heart. I also got to share a room with the original Colgate Girl. In my 20 years in hospitals, she was the only roommate I have ever liked. I do wish I had kept in touch. She was a remarkably kind woman with the most entertaining stories.
Wait, what were we talking about? Oh yeah- complications of scleroderma treated with from homeopathic remedies.
The Rovatio seemed effective in bringing blood flow to my extremities, but there was another problem. During that two week hospital stay, I had a MRSA flare. It manifested as swelling and oozy ulcers on my fingers, bridge of my nose and elbows. Raynauds had limited the blood flow, weakening the integrity of my skin, resulting in constant infections on my fingers. I had become so accustomed to my oozing wounds, and because information was limited regarding treatment of scleroderma, the oozing ulcers were just considered something I needed to learn to live with by doctors. Well at least those who weren’t specialists. I had to commute over an hour one way to get treatment and care for scleroderma from the VA, and three hours one-way to see my scleroderma specialist, Dr. Furst. So getting in my car every time my finger oozed, did not seem justifiable.
A few days into my hospital stay, my doctor wanted to know what the infection was, that seemed to be causing these oozing, painful wounds that appeared to be spreading rapidly. Ooze was swabbed and nothing grew. The antibiotics they threw at me were useless. The infectious disease team did a thorough medical history. They asked about the places I had been while in the Navy, and tests they did to link it to infectious diseases came up negative. Then, my lab tests came back positive for a little infection known as MRSA. That’s when my room became isolation. It looked like a crime scene from the outside. Yellow tape with black writing was all over my door. Anyone who entered my room, even to just deliver food, had to gown-up.
So the infectious disease doctors tried to nail down how I got it. MRSA was in the news as the latest plague and it was popping up everywhere. We discussed my wound care. I have used band-aids through the years. Personally, I find them to be nice incubators for infections. I used to wear up to three band-aids for one wound, which from a distance made my wounds less noticeable than a giant white gauze pad, secured with tape around my fingers. If you keep up with my blog, you would know how important it is to me that I do not appear sick. So piling on band-aids seemed like a good idea. They provided protection,but they can get gross from sweaty hands. Then, there was this one time in California, when I was soaking my hands in some water I mixed with some powder I got from a homeopathic “doctor”. I was doing it three times a day. Apparently, soaking a hand with open wounds in ground up fish powder probably didn’t help. It wasn’t sterile. And it was left on my skin. and then I covered it with a band-aid, because you know- appearance.
I forgot to mention that when I was doing the fish powder treatment, I was visiting family and I was on mountains of Vicodin for swelling and drainage of the wounds in my fingers. Of course, when I asked my homeopathic doctor about these obvious symptoms of infection, she told me not to worry. That meant the toxins causing scleroderma were leaving my body. Did you get that? The lady with an advanced degree in philosophy, told me the yellow puss pouring out of my knuckles and finger tips was scleroderma leaving my body. Eventually, I was seen by a doctor who said something about a negative stain staff infection. Of course, he was a doctor and all he knew was how to prescribe antibiotics that made the oozing stop. Well, at least for a while. Eventually the antibiotics began to fail. Ooze was just something I had to live with. It did come and go through the years.
Looking back on the “fish powder fiasco”, I now know that my fingers were infected. maybe it wasn’t the fish power that caused it. Maybe, it was that the infection had become so bad, it developed into MRSA. Unfortunately, I can’t go back in time for a case study, so I guess we’ll just have to speculate.
Since 2005, I still get infections, but rarely. When I get them, my doctors usually go straight to the MRSA meds after a usual antibiotic fails. Depending on the stage of infection, sometimes they go right to the Vancomyacin. nd then there was that time I had an infection in my foot, and the rheumatologist at the Long Beach VA, misdiagnosed me with osteomyelytis because she did not pay attention to my past medical history. That was the time I was hospitalized for 45 days. It was a misdiagnosis. Better safe than sorry though, right? (Yeah, I have nothing kind to say bout that rheumatologist.)
Look, I know how hopeful homeopathic medicine can sound after years of no answers for symptoms that question one’s own sanity. And there are concentrations of the homeopathic remedies that are so weak, they have no physical effects, but do present a psychological benefit known as the placebo effect. I have to be honest. I have done things with crystals, that I believe helped. Not because of the crystals themselves, but because of what I thought of the crystals. It helped me to relax, which lowered my stress and I felt better, psychologically. For weeks I held those crystals, or rocks in my hands, or would keep the in my pockets. Those rocks made me want to eat better and exercise regularly, and wouldn’t you know it? I felt better. The rocks did nothing but give me something to believe in and that’s what helped me. But just because I felt better, that does not prove these things somehow cured me. I still have scleroderma and it is progressing. I am eating well and exercising regularly. Does it prove anything? No, because it’s anecdotal: A non-scientific account of my personal experience. It does however, create more questions.
While research is going on, and the wait for better treatment and a cure continues. As we are learning through robust research, the homeopathic market continues to provide hope to the hopeless. To be honest, I still spend money on hope. I keep it limited to things like beet juice or infused chocolate. When recommends their homeopathic doctor, or I should take a trip to the vitamin aisle at Whole Foods, I use a mantra to help me accept the person’s advice gracefully. They do mean well. So, I gently say to myself and repeat until calm, “You know what else is natural? Arsenic, uranium and bullshit.”
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 ofcancer, 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 researchbeing 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!
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-preverashots 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.
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.
I had been married nearly eleven years when I told my husband I wanted to separate a while. We eventually divorced, with all the ugliness that comes with such an event. Then, things started going well between us, but it didn’t happen overnight, but we definitely have a better relationship now, than when we were married.
My ex-husband and I were forced to not only stay in contact, but learn to work together for the sake of our son. It wasn’t easy. There was hair pulling, biting and temper tantrums; and my son wasn’t so happy about it either. Then, one day, I did the unthinkable. I told my ex that I thought it was best my son be with him full time.
It was not an easy decision, but it was the right decision. My son’s father and I have joint custody, so the first few years, we split my son’s time during the week. That meant half the week he was with me, half the week he was with his father. It was a rotation of four days on, three days off, and the next week was three days on and four days off. Funny thing about that rotation, that was the watch schedule for my job as a Radioman, in the Navy. Four days on, three days off, four nights on, three days off. then back to days to do it all again. My body and mind never really adjusted to that schedule, and I was in my 20’s. That same type of schedule was not working for my son either. I had even moved into the same housing track as his father, step-mom and step-sister, but you know, my son needed consistency. Sure, it was great to be so close. And for us as his parents, it was nice to be able to be with him half of the time, but my son switching homes every four days reminded me of my childhood: Not really feeling at home anywhere.
Growing up, we moved a lot. I went to eleven different schools in twelve years; six elementary schools, two junior highs and three high schools. I know the name of every school, except for kindergarten. That was somewhere in Fullerton. I felt at home at my grandparent’s house, because that was where we lived most.
When my parents first divorced, I saw my dad more. We would go with him on Sundays to Fountain Valley Fun Center and ride bumper boats, play video games and drive the track at Malibu Grand Prix. It was great! My parents worked things out between them, mostly. It was far from perfect, but aren’t all parents winging it? I love my parents, and I would get frustrated with their choices and sometimes I still do, but since my own divorce, I have become less judgmental.
My son’s rotation was not working for me either. When I didn’t have my son, I stayed home because I was broke. I spent my money on the three bedroom house I rented and things for and to do with my son. I realized this was unhealthy, when a friend came to visit and I could not hear out of my right ear. I hadn’t noticed it, because I was constantly alone when not with my son. I went to see my doctor about my hearing, and I had so much wax build up, I could not hear out of my right ear. That’s when I realized I needed to make a change, because I did nothing when I wasn’t with my son. I watched TV. I wrote in my blog. On the surface it seemed like I had a life, but when people asked me what I liked to do, I had no answer. Then one day I realized that my son and I would both do better, if he were with his dad full time.
It wasn’t because I thought I was a bad mom, but because I felt it was what was best for my son. In addition to being broke, I had doctor’s appointments and hospitals stays. The nearest medical facility that could handle my complicated diagnosis, was forty-seven miles away. My commute could be anywhere between fifty minutes to three hours, one way depending on traffic. I was constantly late to pick up my son, or to his school events because of traffic.
When I told my son’s dad I thought it would be best form my son that he were with him full time, I had expected a fight, but instead it opened up our communication and cooperation. Look, it wasn’t perfect at first, but my son not only had a step-sister, he lived with his step-sister. They had met at age five. They are nine months apart and had already bonded as brother and sister when they were together, but once he lived with her full time, his behavior improved, and he seemed more relaxed.
Of course, I got the expected criticism from some family members. One aunt even said to me, “Karen, how can you let another woman raise your son? How is he going to know who his mother is?”
Of course, my son was sitting right next to me, playing Minecraft on his iPad. Because family will always question your parenting, right in front of your child. That’s their way of showing you they love you, right? I looked at my son and said, “Jake, who’s your mommy?”
“You are.” He replied without skipping a beat.
Then my cousin spoke up, in my defense, and a few other people did as well. I felt loved that day. My great aunt asked me an honest question that was hurtful, and my cousins stepped up in my defense. I was feelin’ the love that day.
Until recently, I felt I had to explain why I was not with my son full-time. I felt I had to explain that my son was with his dad and step mom not because I had gone off the deep end, or have a meth addiction. I was so insecure about it, I found myself standing on the sideline of my son’s flag football game, explaining to other parents why I’m not crazy. Sounds crazy, right? You betcha!
I would explain my need to be near a medical facility and I needed a hobby so why not stand-up comedy, but that happened only once at flag football. On my way back to LA after attending my son’s game, I looked over at the eleven year-old, tucked in under a down jacket I bought in the 1990’s, sound asleep. He had a great game, a great day and a great week. I no longer felt guilty. I felt relieved.
You see, even though I was in LA, his step-mom posted pictures on Facebook. Every time I saw a picture of him, I saw a happy, confident kid. I thought it was just me. Of course, this wasn’t just me. This past Friday,there was a pizza party after my son’s game. I sat next to my son’s step mom, next to her was my son’s dad, who was also the team’s coach. Across the table was who I thought was the assistant coach, and his wife. It turned out, who I thought was the assistant coach, was someone my son’s dad asked to volunteer to help him coach, which is something I always liked about my son’s dad. If he didn’t know how to do something, he would find someone who did and learn from them. Who I thought was the assistant coach, was actually a professional trainer of football players grade 1-8. Does his opinion really matter to me? Not really, except for that night at the pizza party.
This trainer and my son’s dad were talking about the game the team had just won. My son is the center. For those of you who know nothing of football, that’s the player who hikes the ball to the quarterback. The coaches have a playbook and some are referred to as plays for individuals who receive the ball. I had only recently heard my son Jake was a receiver in one of these plays. The trainer said to my son’s dad, “Be sure to use Jake’s play in the next game. He’s getting confident and he’s ready.”
Now, that seems like a pretty generic statement. But to a parent like me, who like all moms have a healthy amount of Mommy-Guilt, in addition to the guilt of not personally caring my son every day, I did a little happy-dance in my head. (I hope. I am pretty sure no one else saw me dancing in my seat. One can never be too sure sometimes.)
I was excited to hear from a total stranger, that my son was becoming more confident, and ready to take on new challenge That even though I left my son’s hometown to pursue what some may be viewing as a midlife crisis, my son was growing up healthy, happy, confident and a kid who knows he’s loved. As a parent, that is the best possible outcome, no matter what the custody arrangements or income.
So, next time you see a family and the ex-wife and step-mom get along, and it seems nontraditional to you, please consciously replace the word nontraditional with happy. Because no matter what the family dynamic, a happy family is one that works together to provide what’s best for their children.
Monday was busy, and Tuesday ended with a trip to the ER, presenting with neck pain and difficulty swallowing. My neck felt like I had whiplash. I hadn’t done anything to injure myself, and wrote it off as a strained neck from to much driving. But something wasn’t consistent with pulled neck muscle. It was like a bad episode of Sesame Street’s “Which One of These Things is Not Like The Other?”
I assumed it to was allergies. Which is stupid, because I knew better. After twenty years as a medial anomaly, I just knew better. But I didn’t think anything of it until my cousin asked if I had any flu-like symptoms.
So I packed a bag, got in my car and drove myself to the ER. I always drive myself because I hate taking people with me. I end up feeling like I need to make them feel comfortable. I get those worried looks, and I hate them. It’s not their fault I view my ER visits as somewhat routine. Mostly because I never let things get so far out of hand, I couldn’t drive there. I’d rather go to the ER and ‘cry wolf’, than ‘Suck it up, Buttercup’ until my condition becomes catastrophic. I’m proactive that way, I guess.
I did notify my family I was going, which I hate to do, but I am also thankful to live far enough away they can’t just jump in the car and come to the ER. Not because I want to leave them out, I just hate not having answers to their questions. I view ER visits as fact-finding missions, in addition to emergency care. I’ve been doing this 20 years now, and a trip to the ER is just normal to me. Not because I have fallen through cracks in the system. It’s because whatever the complication, waiting for a doctor’s appointment in a specialist clinic, held once a week, is usually not an option.
My greatest fear of living in Long Beach since the beginning of the 2014, is that things might get so bad, an ambulance might be needed one day, and I would not be taken to a facility that is equipped with doctors who know how to treat a patient with scleroderma and sarcoidosis. Instead, I would be taken to the Long Beach VA, for another botched diagnosis.
The ER in West LA, appeared to have their act together. Well, except that ER nurse profiling me as a drug addict. I made sure to tell his supervisors, but that’s a whole other post.
Back to the ER: First, using a CT scan with contrast, observations of signs and notation of symptom, I was diagnosed with a retro pharyngeal infection. well, sort of- it was worst case, but there were missing symptoms specifically a fever and evidence of an abscess. Luckily, I was fortunate enough to work with a team of doctors who were interested in answers, and getting them correct. So, they followed the evidence.
I thought when diagnosed wasn’t as bad as a progression in scleroderma or sarcoidosis. Of course, it is a very serious infection that could be fatal if not treated in time. But the doctors were a little puzzled. I had swelling, but no fever and no sign of an abscess, which are both criteria for diagnosis. I was still treated with antibiotics until the diagnosis could be proven otherwise.
I was seen by an ENT, who then requested a second CT scan with contrast, and later, that diagnosis was changed, thanks to the very capable rheumatology department and lucky me, my attending doctor in the hospital was a rheumatologist. I think she is also the chief of rheumatology. The diagnosis was changed to calcium hydroxyapatite deposition in the periarticular soft tissues of my neck. In English: Calcinosisin my neck tissue, specifically the tendons.
And there was a treatment. And of course when the in-patient doctor told me the diagnosis, I of course asked to have the infection instead, because to me, anything scleroderma related in a new region of my body, no matter how treatable, in my mind is always the worst possible outcome. Of course, I had a much better prognosis with calcinosis in my neck than an infection in my neck, but it was scleroderma and it took hours to get my head out of my butt over it. (Seriously, what kind of an idiot would rather have an infection that a treatable symptom of a chronic illness? Oh, right. I’m that kind of idiot.)
So I was given medication to break apart the calcinosis, kept on antibiotics just in case and my condition improved in about thirty-six hours. I was sent home. The very next day, I went to my high school reunion and had a blast.
And here I am seven days after discharge, feeling completely recovered, and packing my things to move to LA. I wish I could stay in Long beach, but I cannot be guaranteed continuity of care at the Long Beach VA
Sometimes, I would like to have a gentler, familiar diagnosis instead of scleroderma. A diagnosis other people have heard of, like chlamydia. At least that can be treated. And when I tell people what I have, I would not have to explain it. Everyone has heard of chlamydia, and that can be cured.
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?
The Ice Bucket Challenge is going to help the ALS Association get closeer to a world without ALS. Before you add the ice, take a few minutes and read how dumping a bucket of icewater over your head will help patients with scleroderma and other diseases, as well. Then, enjoy your dunking!
My body has changed a lot over the last 20 years. My hands are severely contracted. I have been offered surgery to straighten my fingers, permanently and bending the top knuckles in a “hook”. I was told my hands would be more useful. I have refused this procedure more times than I can count. I refuse it because I believe that this is a plateau. Of course, I will never regain full use of my hands before scleroderma, but I still call it a plateau. Progress is progress.
Not only have my hands been damaged,there is scarring in my lungs. In 2008-2009, the scarring in my lungs accelerated. We don’t know why, but for some reason, it stopped. The bottom left lobe is scarred, and the short answer is my lung volume is 85%. I had been diagnosed with sarcoidosis in 2007 and was put on the biological drug, Influximib, brand name, Remicade. It may be related to many symptoms being controlled but there is no way of really knowing, without further study. Like ALS and cancer, scleroderma is very complicated. All diseases are different, but none is more serious than the other. Like everything different, we can find things in common. By doing so with diseases, we improve care. In other words, patients of all diseases benefit from breakthroughs in research of different diseases.
Cancer is nothing like scleroderma, but what we have learned from cancer research benefits patients of both scleroderma and ALS. Progression of scleroderma is slowed down by drugs that suppress the immune system. I sometimes wonder if I’m grasping for straws, but as someone who has spent many hours sitting next to cancer patients, receiving immunosuppression drugs (aka chemo infusions, but not cancer chemo), I’ve seen enough to know that as horrible as cancer is, I have benefited more than I will ever know from past cancer patients. Oncology nurses , who specialize in cancer care, are amazing, and I have never had to train an oncology nurse on how to put in an IV. I’ve had to train calm down a lot of nurses many nurses because of their lack of experience starting an IV in patients with thickened, hard skin. Thanks to an IV nurse’s suggestion, I have a port-o-cath. It had once been suggested to me by a rheumatologist, and I refused. I felt that getting a port-o-cath meant I was near the end. Getting that suggestion from an oncology nurse in a room full of chemo patients, allowed me to ask about use not just from the nurse, but from patients sitting next to me. Now, the port I have in my chest to allow the ease of IV medication, was not designed to help patients with scleroderma. The inspiration for use doesn’t matter, because the principals are universal. It was put there because doctors know that a port-o-cath would make it easier to administer IV medication, reduce stress, infection and keep my otherwise overused veins, intact. Of course, my rheumatologist happily ordered the procedure for me. It didn’t matter to them nurses made it easier for me to understand, they were just happy I was taking a positive step to make my life a little easier. And, I was really relived when I saw that my cleavage is still spectacular with a port-o-cath.
What about long term patient care and hospice. These things are all needed by many patients with scleroderma, but scleroderma is so rare compared to cancer if there were no cancer treatment, there would be no scleroderma care and treatment. We have also learned a lot from ALS, or Lou Gehrig’s Disease. Do you see the connection? Care and so much more.
So please, take The Ice Bucket Challenge, and help to create a world without ALS. It helps us all. But I would be crazy not to mention that I am raising funds for the Scleroderma Foundation. My son and I will be walking this Saturday in San Diego, California. So please donate to ALS Assciation, then please visit my donor page and donate a dollar or two. I’m asking for such a small donation, because there are many diseases that need curing and a dollar or two leaves you the option to donate to another association. No disease needs more donations than any other; all of these diseases need to be cured. In addition to research, non-profit associations, foundations and organizations also provide doctor, patient, caregiver support and education. We may not be fighting the same battles, but we are all in this war together. Thank you for reading.
Year-round, researchers are gaining ground in the fight against scleroderma. Doctors who have studied scleroderma and have extensive experience treating patients, are traveling all over the world to teach doctors, and medical students. Patients are gathering in support groups to learn about scleroderma, and share ways they cope. There is much being done, and all of this needs funding. All of the activities I just listed, are supported by donations, grants and volunteers. Every June, we unite to support the research, education and patient assistance. We share memes, we wear teal, write letters to the editor and/or we gather in parks and walk to raise funds for research of scleroderma.
So if you stop reading this post here, you have read the most important part of it. Thank you 🙂
I started writing about my journey with scleroderma and sarcoidosis, with a blog called Scleroderma, Sarcoidosis and Box Wine. I changed the name to The Mighty Turtle in 2012, for easier name recognition. (I know fellow patients can relate.) Since that time, I have had experiences both good and bad.
Back to being sick and tired of writing about being sick and tired… So here we are, starting a month of Facebook, Instagram and Twitter, flooded with teal, along with the colors of other diseases. Look, there are just not enough colors in the rainbow for diseases that are rare, not-so-rare and uncured. In spite of my frustration, I look forward to reading posts, and seeing pictures of fellow patients. I look forward stories of hope, memorium, and humor where we can find it.
You might be thinking two questions: ”
1. Karen, how can I possibly laugh at a time like this?
2. Are you high?
The answer to your first question is that at the most serious of times, I have found a way to find humor. Laughter is the icebreaker to deadening silence when hope is lost, and no one is sure what to do next. It’s not easy, for best results humor should be inappropriate, or at the very least,slightly offensive- because let’s face it, scleroderma is offensive by just being present. On the science side, laughter also releases endorphins, and helps our brain cope with situations. Laugh at what scares you. It will only make you stronger. (Go ahead, research how laughter is the best medicine. Millions of Reader’s Digest readers can’t be wrong.)
My answer to your second question: No, I’m not high. (As far as you know.)
I do mean it when I say I am sick of scleroderma awareness. There are great organization making breakthroughs in treatment, and clues to a cure. If you haven’t already, please make the time to learn about these orgs. Sponsor or share fundraisers and make a wish for a cure. Our lives depend on it. Thank you.