Staying Alive with Scleroderma
Tuesday, June 6, 2017
By: Amy Gietzen

My story starts out fresh out of high school. I was just a 19 year old with the world at her fingertips. Then, in the blink of an eye, I was left with nothing but millions of unanswered questions and a diagnosis of a word I didn't know how to even pronounce.

I never really thought I'd be the type of person that doesn't have a plan. Throughout my childhood and into my adult life I have always had a detailed plan of what my life was going to be like and how my journey would start and finish. I wouldn't say I was obsessive or neurotic, I was just 100% sure of what I wanted and how i was going to get it. Getting sick changed all that...I was 19 years old, a freshman in college when I first met you scleroderma. I was working as a dietary supervisor and was at the beginning of my adult life. You took that away from me and so much more.

Growing up I had the best childhood! Amazing parents who cared that we had dinner as a family every night and took myself and my older sister and younger brother on a family vacation every summer. We camped, went fishing, and swimming and of course roasted marshmallows. I was always excited to learn something new. As I stepped into my teenage years, my passion for helping others blossomed. I started a job at a local Nursing home and attended vocational classes in nursing. I had found my niche.

I first noticed you scleroderma as a nagging pain in my wrist and elbow. Then, like so many others who've met you, my fingers started to turn blue. It didn't take long for me to realize something was wrong with my body and low and behold there you were. I was diagnosed in 2001 with the most severe kind of scleroderma: Diffuse Systemic Sclerosis. At first, I don't really think I grasped the severity and the finality of you scleroderma. My life pushed on as normal. It wasn't until I started to get severe digital ulcers on my finger ips that my eyes opened to the horrors of the disease. Along with the ulcers, I started to develop scaring on my lungs, also known as pulmonary fibrosis, and I had acid reflux so severe I would wake up in the middle of the night with the contents of my stomach coming out of my nose and mouth.

My fight had started and I wasn't going to take it laying down. I dove headfirst into researching anything and everything I could find on systemic scleroderma. Which back then was not a lot. After days of searching the web, I came across a world-renowned doctor, in Pittsburgh who specialized in scleroderma for over 49 years . I called there the next day and was making arrangements to be seen by the end of the week. When I stepped through the doors of the hospital for the first time in Pittsburgh, I never looked back. Everyone I met was not only familiar with the disease but have treated many patients who suffer from the disease like I do. I didn't have to explain why my skin was so hard and tight or why I couldn't open my mouth very wide. Or why I had red spots all over my body, and no! They are not contagious! I had found my people. Medical professionals who were familiar with scleroderma and had treated it before, and researchers who were working hard to find better ways to treat scleroderma, and ultimately one day discover a cure.

The UPMC Hospital in Pittsburgh changed my life and I have been going there ever since! The road has not been easy in the 15 years I've had this disease. I have been to three different states Pittsburgh, Boston, and North Carolina on my quest for treatment. Not to mention my travels to every inch of Buffalo and up-state New York. I have had a lung biopsy, a stomach surgery, surgery on my esophagus to dilate and stretch it, a sympathectomy on both of my hands, two cardiac ablations, a full-scale evaluation three times for a possible lung transplant, (which I was turned down for all three times). I have under gone two cardiac catheterizations and surgery on my fingers to straighten them so I could grasp things better, and my most recent adventure; a two year long process to get accepted at Duke University to under go a stem cell transplant in a clinical trial. I have had hundreds of tests and surgical procedures for example: 3 right and left arm ablations, MRI's, CAT scans, X-rays, barium swallows, Pulmonary function tests, blood tests, urinalysis, wound care treatments and ulcer debreedment on my fingers and toes, 41 Hyperbaric Oxygen treatments, Iron infusions, Chemo based medicine infusions (Cytoxin) vitamin B12 shots, I had a PIC line put in to my artery in my neck, EKG's , ECHO's countless hours of PT, and OT and taken thousands of pills. But though it all I have always focused on the positive parts of my life.

Even at times when I am at my lowest, which for me was my most recent let down. I was denied acceptance into the Stem cell Clinical trial. Hearing the doctor say the word " NO!" was probably the most devastating thing I have ever had to endure. Even then I just keep pushing on and try to live day to day, and experience life in the moment and enjoy every precious day I am given. I look back on my life so far and am amazed at how I have met so many kind, selfless medical professionals and how I got to share a small piece of my story with them.

I started my own personal website on Facebook called: "Staying Alive with Scleroderma" to try to reach other survivors who like me are just trying to "STAY ALIVE." I have had the pleasure of hearing from so many people from all over the world. People like me who were lost and had no idea what to do or how to move forward. People with a million questions who just want advice or a shoulder to cry on, and most of the time they just want to hear from a person who has been living everyday with this cruel disease and that they too can live a meaningful life while battling a terminal illness. I like to think I am helping them. That I am making their lives a little more bearable.This past year I won a scholarship to attend the National Scleroderma patient education conference in New Orleans. It was hands down the best three days of my life. I was privileged to be asked to participate in a interview for a commercial that a group called SPIN was shooting. They are putting together an educational website on scleroderma. I also volunteered to have photos taken of my hands and my makeup free face to help the Scleroderma Foundation teach others about the disease.

Unless you are sick you don't know how normal it makes you feel to finally meet someone who can relate to your struggles and who know what your going through first hand! Someone who understands what it feels like to have to have a finger amputated or to need a feeding tube because you can't swallow food anymore. If you had asked my ten years ago to take a photo without my makeup on or speak publicly about my disease on a personal level I would have given you a very very hard NO! Mainly because I just wasn't living in my truth. I was letting my disease control me and how I lived my life and that to me was unacceptable! Yes, scleroderma you have changed my life in so many ways. In ways I can not forgive, like causing me to have to quit nursing school without my degree and to resign from my job as a medical assistant because I was too exhausted to do all the work I was required to do.

You have cost me friendships, relationships, my ability to have children, family vacations, job opportunities and you have restricted where I go, with whom I go with, when I go and if I go anywhere. Having said that, I would not change a single thing about my life! Yes my life has been drastically changed and I have had to learn to let go of myself as a healthy "normal" person. I have had to teach myself how to live a life of a medically challenged person because I will not consider myself disabled, and trust me there are days when the bad definitely out way the good but what would be the point of willowy in what might have been? In the things I can change? In the life I once had? That is a waste of time that frankly is very precious to me.

I honestly believe scleroderma came into my life for a reason, and day by day I am learning what that reason is. I could not look at myself in the mirror everyday if I didn't share all of my triumphs and all of my struggles over the last 15 years with others. I would have been so thankful to have had someone willing to reach out to me and answer my questions and listen to me cry over all of the things that were happening to me and the changes my body was undergoing, and the things I had to give up. So I want to do that for other people struggling like I did. If I make just one person feel better about themselves and their situations then to me that's a win! We can not expect to have a cure fall into our laps so as long as I am able. I am going to do my part to help educate people about this disease and make Scleroderma a house hold name! I will never stop fighting for my life and the lives of my Sclero- brothers and sisters.

Yes I am a 34 year old women living with scleroderma but scleroderma does not and never will define me as a person. I have so many other qualities then that of being terminally ill.. I will get up everyday living my truth and fighting to stay alive with scleroderma. I could never say I am thankful for getting sick but I can say getting scleroderma has opened my eyes to the beauty of the world and how I was letting it pass me by. I used to live my life as if I had a lifetime. Now I try to live everyday to the fullest and to be present and open to experience all of life the good and the bad. I may not get to live my life exactly how I envisioned it to be, but I refuse to let this disease dictate my time on this earth, however long or short it may be.