My Scleroderma Story (updated June 2020)

I grew up in a rural community in northern Pennsylvania. My parents were factory employees that worked hard for very little pay. We raised animals for meat, eggs, and milk and supplemented the rest of our food with canned, boxed, and frozen foods from the grocery store. We never had much, but always seemed to get by.

I was born with asthma and like clockwork, had a yearly visit from the strep throat bug. It seemed that if there was an outbreak of strep within a 100-mile radius, I caught it. Otherwise, I was healthy. Until I reached my early twenties. I had no idea that my health would unfold like it has. Who does? Nobody plans for THIS.

In 1998, I was first diagnosed with thyroid disease. It took almost a year to get this diagnosis. At the time, I was active duty military, and unfortunately, the quality of healthcare, left much to be desired. The hospital on post was named Kimborough, but everyone referred to it as “Killborough”. By the time I received a diagnosis I was barely able to keep myself awake for just 8 hours a day. I cried over everything and didn’t know why, and my hair was falling out - yet every time I went to the doctors complaining of these symptoms, they essentially told me that it was all in my head and that nothing was wrong with me. When blood tests were finally done, my TSH level was 12 times what it should have been. My military doctor at the time told me that I had Hoshimoto’s Disease and to take a medication that was being prescribed. She told me nothing about the disease. I had to do my own research to find any information.

At my first visit with a civilian doctor after exiting the military, I was informed that, had the previous doctor waited any longer to do blood tests and diagnose my disease, I would likely have been in a coma in less than a week. I continued care with my doctor to monitor my levels and continued to live a healthy, active life.

In 2002, I was diagnosed with Scleroderma. I had begun experiencing issues with very poor circulation in my fingers. They would turn bluish-purple and become very numb and uncomfortable. Along with this, my skin seemed to be getting very hard and thick on my hands, all of which were making it somewhat difficult to perform my job functions as an IT Consultant. I saw my family doctor who immediately diagnosed me with Raynaud’s and ran some bloodwork to check for some other things. When the results came back, he told me, “I think you have Lupus, but I don’t have enough experience, and other than this positive ANA in your bloodwork, I can't be sure." He referred me to a rheumatologist.

Fortunately, the rheumatologist I saw diagnosed me with what he thought was Scleroderma. Admitting that, it is a disease he had only ever heard of, he sent me to “the best doctor in the world for this disease” …. So, this time around I received a proper diagnosis right off the bat. Unheard of, I know! I was referred to Johns Hopkins Rheumatology Center in Baltimore, MD to see Dr. Wigley, where I immediately started receiving excellent care from an excellent doctor. That was the easy part.

As the disease started to progress it began effecting my joints and tissues, making it impossible to fully straighten my fingers or close my fists. All my joints ached - all of the time. I would spend days at home in bed because getting up hurt so badly, or, because I was unable to get dressed on my own, or walk up or down my stairs, let alone drive my car to work. My doctor would prescribe varying medications that eased the symptoms for short periods of time, but then the disease would progress. So many of the daily tasks that we take for granted became impossible. Using normal utensils to eat, washing my hair, opening a bottle of water, getting in and out of bed, taking a shower, putting on my socks or tying my shoes, all became difficult to impossible, without assistance.

Really, all of life was becoming impossible. Fun activities and pastimes were no longer enjoyable and work was nothing short of a nightmare. I was unable to get down on the ground to play with my niece; I couldn’t walk long distances; I was fatigued - all of the time. I reduced my hours at work to just 20 per week because of the fatigue, pain, and limited abilities. Some days I would cry at just the idea of having to walk the flight of stairs to my office at work.

Around this time, as things seemed to be whizzing out of control from one day to the next, a new drug became available that my doctor suggested we try that would hopefully alleviate most of the pain. However, it was so new that my insurance provider denied coverage for it.

As the disease progressed, a multitude of medical tests indicated that it had also begun to scar the tissues of my lungs, decreasing their function.

At this point, my prognosis was starting to look a little bleak. I am not an individual who is easily brought to tears over difficult situations in my life. However, watching my life turn from that of an active 27-year-old to feeling and functioning like I was in my 60’s or 70’s, in less than an eight-month time frame, whilst knowing there was no cure and no treatment specifically for my disease, and that, most attempts which we were trying, were just shots in the dark, was very difficult for me to handle.

Soon, we found a glimmer of hope! In the fall of 2004, there seemed to be a light at the end of the tunnel. There was a clinical trial being conducted at Johns Hopkins that could possibly put my disease into remission. However, there were some drawbacks; the treatment was drastic, experimental, costly, and complications during the procedure itself could kill me. As this was a clinical trial, most insurances wouldn’t cover it. Considering the luck which we had had with the attempts to get approval for previous medications, we were cautiously optimistic. I didn’t want to get my hopes up and yet, how could I not? It was the only option we had available at the time.

The basic, non-medical idea of the trial would be to “reboot my immune system”. Akin to the bone marrow transplants folks undergo today, except that I didn’t get an bone marrow back, we let my body regenerate it’s own. Otherwise, the trial was the same as treatments of today. Extreme high doses of chemotherapy obliterate the body’s bone marrow and thus the immune system. For a period, it’s like being a newborn baby with no immune system. The body must generate a new one – as described by my oncologist, “The treatment re-programmed the immune system, wiping out the abnormal cells and allowing the stem cells to rebuild a new, disease-free immune system” – like rebooting a computer.

My doctors were able to present a compelling enough case that my insurance agreed to cover the costs. Once that approval was granted, the ball got rolling rather quickly! Just prior to Thanksgiving of that year I began the testing and prep work to start the trial and on December 1, 2004 I was admitted to the hospital as the fifth patient to undergo this treatment and the trial began. The entire process took 20 days. Five of those days were spent in the hospital with a catheter hanging out of my chest to receive the chemotherapy and plethora of other drugs needed to assist my body. The next 15 days were spent making daily trips from my home to the hospital for wellness checks, more IV medications and blood transfusions. During the process, I was either sleeping or in the bathroom. This treatment was THE HARDEST thing I’ve ever done in my life. On December 20, 2004 my new immune system was “born” and I could return to living my life.

Though my immune system had recovered, I was still exhausted and took a bit to recover. My doctor had told me to expect to take a year off to heal and get back to my “old self”. Due to some marital struggles and having the urge to get on with life, I pushed the process along as quickly as I could. Just three months after the treatment I had virtually no pain, I could walk longer distances, take the stairs, go to the office again and I could even put my own socks on and was able to go horseback riding! So, I returned to work and life. 

Unfortunately, this was short lived and in late 2005, I began to experience a flare up of the disease. It manifested in the form of sore, achy muscles and turned into the worst tight itchy skin I’ve ever felt. I wanted to tear my skin off to get relief. Dr. Wigley and I decided to try some anti-inflammatory drugs to start, but they had no effect. We tried another medication as well, to no avail. At last, when I was constantly itching so badly that I would dig sores into my arms, we decided to try chemotherapy again – this time in a milder pill form. After just a few months, it calmed things down and the disease mellowed out. Mostly.

In the years since, I’ve had issues pop up sporadically. My right lung is scarred, and used to get inflamed and rub my rib cage from time, causing great pain. My lung function had continued to decrease but has stabilized with no further decrease of function in the past 2 years.

My heart has scarring that has altered the electrical flow, causing arrhythmia or extra beats, and in turn, is making my heart tired, so it pumps slower than it should - leaving me in congestive heart failure. I take two medications to help it out and see the cardiologist every four months for ongoing monitoring. Fortunately, the medications are doing their job and my heart is stable. 

My hands are curled, deformed, and don’t function well. I’ve had knuckles removed on my right hand to get relief and some sense of “normalcy”. I will never be able to make a full fist or fully open that hand again. I had my index finger amputated on my left hand as it had curled in and, at the time, it was the only finger affected. I've had the remaining fingers partially amputated at the middle knuckle, leaving me with much more functional "nubbins".

I may never be able to fully squat down and pick things up from the floor like I once did. I have been in premature ovarian failure since the age of 29, as a side effect of the trial treatment in 2004. I have osteoporosis. I have the hips and spine of someone in their eighties. There have been unexplained kidney issues that require monitoring. If my diet is not on point I struggle with GERD. I’m severely underweight. My body is riddled with calcium deposits that can be painful and sometimes debilitating.

And so on and so on. The list goes on.

Sometime during 2010-2011, as I was growing tired of the continual struggle, repeated setbacks, taking up to 19 medications a day, and when another flare finally forced me to leave the career I worked so hard at, I started researching alternatives. I started yoga as a way to get some flexibility and independence back. 

I was hooked! Yoga had everything I was looking for and everything I didn’t even know I needed. So much so, in 2014, I trained to become a yoga teacher.  My yoga looks nothing like you see on the cover of Yoga Journal. I use props and have to adapt every pose – but I keep doing it. Yoga saved and improved my flexibility and mobility.  When certified to become a yoga teacher, I had zero desire to teach. I really just wanted to improve my flexibility and learn everything that I could for my own use, to improve my body AND my mind. The training was emotionally exhausting, as I compared my limited body to the other fully functional trainees, knowing that my body would never move that way again. Regardless, yoga keeps my body moving. 

When I started yoga, I was sure I never going to be able to sit flat on the floor, easily do child’s pose, or put my foot behind my head. I’ve since learned to never say never. In my yoga journey, my body has greatly improved mobility, flexibility, range of motion, and I have regained my independence. I still won’t be putting my foot behind my head. And that’s okay. 

During this journey, though I took a break from blogging, I have continued to share my experiences online through Facebook and Instagram (SclerodermaScoop), where I refer to the scleroderma community as “Slayers.” While sharing how yoga had changed my life, one of my “Slayers” asked if I had heard of the woman who teaches Yoga for Scleroderma? No! Who? What? How is this possible? I had been practicing yoga for seven years and hd never heard of this woman? We connected and set up a meeting for a telephone conversation while I was on an Amtrak train, headed out of state for a week. By the end of that ride I had already booked my flights and would be heading to meet her in two weeks and train for certification to teach yoga to scleroderma patients―even though I had already been doing yoga in my own scleroderma body for seven years. I ended up helping teach the class. And still do to this day. She has since become my dear friend and we are partners running the program together. We travel to work with scleroderma patients across the country and to teach other interested yoga teachers how to do the same. 

Back at the same time I began my yoga journey, I started reading about how diet changes have helped people cure their own cancers, beat a HUGE list of diseases – to include autoimmune issues.I started out slow and eventually I went hard-core, balls to the wall with diet changes, added some other natural therapies, and exercise. Sometimes I am strict and do great. Other times, it seems that no matter how “good” I am, things still pop up. Yet, overall, I function much better with these lifestyle changes than I ever did on the medications. Now I just try to balance the best I can and continue to stay very aware of my body. I am down to four medications and a few supplements. I try to eat a clean diet, schedule daily naps, get weekly massages, see a chiropractor, meditate, do yoga, keep my stress load at a minimum (stress is a BIG flare inducer for me), and then, when I have the energy –

I just LIVE the hell out of this life.

At the same time I was preparing to undergo the chemo trial and beginning to contemplate the meaning of life, Tim McGraw released the song, “Live Like You Were Dying.” It couldn’t have hit the airwaves at a more appropriate time. It quickly became my anthem and my fuel. I became aware of and came to grips with the reality that we do not live forever - the reality that we do not know what tomorrow will bring. Disease or no disease, I could be gone tomorrow. I am ever so grateful to have reached that understanding at such a young age.

Our lives, today, and tomorrow are gifts. Be grateful. Live with no regrets. Learn from your mistakes. Do not ever wish to have done anything differently. Everything that happens, gets you to where you are today. We can not be who we are, without having been who we were.

Love with every ounce of your soul. Starting with yourself. Love like you want to be loved. Keep your tribe small and close. Love and cherish those people that treat you well for they will be the ones there to prop you up when you need it. Let the rest go. Their negativity and stress have no place in your life. It can literally make you sick. Our time is too short and too important to be wasted like that.

Travel, sightsee, look at nature, find a way to do the things you want to. Do what makes you happy; do not just talk about it – DO IT! If it seems impossible, find a way. If it IS impossible (much to my dismay I’ve learned that there just ARE some things I won’t be able to do) find a way to make peace with that and move on. There are still plenty of other experiences to be had. In 2018, I purchased my dream home. It might not be my childhood dream of a ranch in Montana, you know, Raynaud’s and all, but I’m on 8 acres of Florida heaven. I have horses, a mule, rabbit, cats and dogs all while surrounded by Mother Nature. 

It’s not an easy life, this living with Scleroderma. Some days it’s downright miserable. Other days are beautiful and help fade the memories of the bad days. No matter the type of day I’m having, I do what I must do so that I persevere and rock on!

💋🤘🏼