Advocates on Steps of Congress 2013
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Scleroderma's Not SO Bad

Living with Scleroderma can be devastating. It's a daily struggle. It's scary. However, life is short and we must do what we can to keep living every day to the fullest.

Scleroderma's Not SO BadIn 1998, I was first diagnosed with thyroid disease. It took almost a year to get this diagnosis. By the time I was diagnosed 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 doctor's 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 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. I then sought new care. Upon my first visit with the new doctor, 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.

In 2003 I was diagnosed with Scleroderma. I began 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.

Fortunately, I was lucky when it came to getting a diagnosis for this disease. I was referred to Johns Hopkins to see Dr. Wigley and started receiving excellent care from an excellent doctor. However, that was the easy part. As the disease started to progress it began affecting all of my joints and tissues, making it impossible to fully straighten my fingers or close my fists. All of my joints ached all 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. I was put on medications that eased these symptoms for a short period of time, but then things got worse. I could then no longer tie my shoes, or even put socks on by myself. I was unable to get down on the ground to play with my niece, I couldn't walk long distances at all, I was fatigued all of the time, and just the idea of having to walk the flight of stairs to my office at work some days made me cry. Many other things we take for granted were difficult or impossible for me to manage on my own from using normal utensils to eat, to washing my hair, opening a bottle of water or just getting in and out of bed or the shower. I had to cut back my hours at work to just 20 hours a week and even that was difficult to maintain because of the fatigue and the pain.

There was a drug that my doctor suggested we try that would alleviate a majority of the pain; however, it was new so my insurance provider denied coverage for it. As the disease progressed, a multitude of medical tests indicated that the disease had also begun to scar the tissues of my lungs, decreasing their function.

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 was very difficult for me to handle. Especially when you know there is no cure for what you have.

In the fall of 2004, there seemed to be a light at the end of the tunnel. There was a study 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 is a 'study treatment' and not commonly used, most insurances won't cover it because it is an experimental treatment.

Again, I was lucky, as my doctors were able to present a compelling enough case to my insurance provider that they paid for the treatment. I then underwent a treatment of extreme high dose Cytoxan chemotherapy, completely obliterating my bone marrow, and thus my immune system, in order to force my body to remanufacture them. 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." 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 go horseback riding!

Unfortunately, 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 affect. We tried another medication to no avail as well. At last when I was constantly itching so badly that I would dig sores into my arms, we decided to try the Cytoxan again this time in a milder pill form. After just a few months, it calmed things down.

In the years since I've had issues pop up here and there. My right lung scarring gets inflamed and rubs my rib cage from time, causing great pain. My lung function has decreased, yet again.

My heart now has scarring and is pumping slower than it should. I need a medication to help it out and six month check-ups with a cardiologist.

My hands are curled, deformed, and don't function well. I've had a finger amputated and knuckles removed to get relief and some sense of "normalcy" for my hands and their function.

I may never be able to make a full fist or fully open my hands again. I may never be able squat down and pick things up from the floor like I once did. I have been premature ovarian failure since the age of 29, as a side effect of the treatment. We were unable to conceive a child, even through IVF, and the IVF resulted in a mini-flare.

I have osteoporosis. At age 35, I have the hips and spine of someone in their seventies.
However, in spite of all that, things are looking up for me.

Scleroderma has forced me to evolve and become a new woman. My old self is gone.
Having this disease has completely changed my life. As I was preparing to undergo this drastic treatment, I quickly became aware of and came to grips with the reality that most others don't experience until much later in life the reality that we don't live forever; the reality that we don't know what tomorrow will bring. Disease or no disease, I could be gone tomorrow. This disease or its drastic treatment could kill me or I could be hit by a bus. Either way, nobody is to know for sure what tomorrow will bring. I am ever so grateful to have reached that understanding at such a young age.
The year of the chemo, Tim McGraw released the song, "Live Like You Were Dying." It couldn't have hit the airwaves at a more appropriate time in my life. I was starting to contemplate how I wanted to live 'my new life,' after all, I was being granted a second chance and I darn well better make it count! Tim's song, coupled with Dr. Wigley's advice of "live the good life," and past life experiences now make so much sense to me:

  • Your life, today, and tomorrow are gifts.
  • Live your life with no regrets, learn from your mistakes, and don't ever wish change a thing or wish to have done anything differently. Everything that has happened happens for a reason, it gets you to where you are today.
  • Love with every ounce of your soul, if you give that kind of love, someone, somewhere will want give it back to you. Giving that kind of love and getting it in return are an unparalleled experience.
  • Enjoy life and all it has to offer. Travel, Sightsee, look at nature, find a way to do the things you want to. Do what makes you happy; don't just talk about it DO IT! If it seems impossible, find a way. My husband hauls (literally) me all around so that I can experience everything. Jet-skiing in St. Croix. ATVing through the rain forest in Puerto Rico. I can't drive a jet-ski or an ATV, but HE can. He pulls me on, figures out how to secure me from falling off and away we go! I might be sore the next day, but a little achiness is FAR less than what I've been through before and worth the experience.
  • Love and cherish the people that treat you well. Let the rest go. Their negativity and stress have no place in your life. They will make you sick. Our time is too short and too important to be wasted like that.
  • Be grateful for all of life's gifts your life, your today and every tomorrow.

Having this disease can be difficult. I'm not going to lie and say that it's easy. However, with the right doctors, the right medical team, and the right support, it IS manageable. Make sure that you have a doctor that you trust implicitly. If you don't, I suggest getting a new one. I trust Dr. Wigley with my life. I couldn't ask for a better doctor or better coach. To me, that is one of the biggest keys to living with Scleroderma, having the right group of doctors, loved ones, and friends on your team, in your corner, coaching and cheering you along the way.

 

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