December 1997 was the month and the year that changed my life forever. I was thirty-seven years old and I thought I was as healthy as could be. The first hint that something was wrong was when my mother-in-law Erika stared at my legs and asked me why my legs were so shiny and swollen...
I started wondering myself; I had noticed I really hadn’t been feeling well. I called my primary doctor and made an appointment. During my visit, I told him what my symptoms were and he immediately put me on water pills. I took the water pills for about a week. The symptoms seemed to go away, but then came back shortly after. I then asked my primary what was wrong with me; but he had no answers for me. We were both baffled and not sure what was wrong. He sent me to a rheumatologist that was in the same group. By the time I saw the rheumatologist it was April 30, 1998, it had taken four months for him to see me, due to the overwhelming amount of patients he had. By the time I saw him my legs had swelled up to the size of tree stumps and were very hard. This also made it very difficult, almost impossible to walk. I had to wear slippers to keep the appointment. By this time it had affected my hands, arms, elbows, and face, which were now very hard as well. The doctor gave me a full examination; he ordered a bunch of tests. He also took an x-ray of my hands because they were curled up to the palms. Both of my doctors consulted one another that very day, and diagnosed me with Scleroderma. At that time I had no idea what Scleroderma was. The rheumatologist told me to get dressed and to meet him back in his office. He then proceeded to tell me that I was going to be sick of him and seeing his face. I started to laugh not sure at that point, if I should have laughed or cried. During my time at his office he said I would have to come back three times a week. He wanted to keep a close watch on me.
I left his office about three hours later; I sat in my car and cried my eyes out. I didn’t know how I was going to tell my family, I really didn’t know what to tell them. It took me a good ten minutes to gather my thoughts, just so I could drive home. Thoughts were going through my head of what I would say to my family. When I got home I had to break the news to my husband Peter and son Derrick. Then I proceeded to call my father and broke the news to him as well. Next on my list were my two sisters and brother. When they all found out they were completely and utterly devastated. I then had to tell my mother, which was the hardest thing I had to do. My mother who had had a stroke at the age of sixty-seven was in a nursing home. I asked my sister Donna to please come with me, so we could tell mom together. When I told my mother she cried, but I don’t think she really understood.
My doctor then told me that I would have to take an injection once a week, which I ended up taking for the three years. The injected drug was called Methotrexate. Methotrexate played a huge role in the success of softening up my skin. To this day some of my skin is still tight, especially my hands. In the beginning I had no flexibility in my hands at all. I found I had a difficult time doing things I once took for granted like driving, holding things, tying my shoes, holding a cup, holding a fork, just to name a few. Now those tasks were next to impossible. I was forced to drive with the palm of my hands using a rubber finger so I could grip the wheel. I found out that Scleroderma can take away your independence. The disease was making me more and more handicapped. My doctor wanted me to see a Scleroderma specialist in New Brunswick, New Jersey just to confirm that I did in fact definitely have scleroderma.
At this point I was working full time and still trying to deal with this disease. It was very hard for me to do my job. I was a computer biller, and had to use my hands all the time. I had to type on the computer and input numbers, which slowed me down since I was used to typing fast. During the first year and a half, I really didn’t know what was going to happen to me. I was very sick and not sure if I was going to make it. I was also in and out of several hospitals during that time. Around June 2002 I started to get more and more tired. I noticed that I was out of breath a lot. That month was very rough for me. One Saturday, I was at my father’s house and sat down on his couch, because I felt as if I was getting worse. I couldn’t get any air into my lungs. My father, who had oxygen in the house actually had to give me some. At that point he called 9-1-1 because I actually couldn’t breathe at all. They rushed me to the hospital that Saturday afternoon. They ran more tests, and then they sent me home later that night. The next business day I went back to my rheumatologist, and he then referred me to the pulmonary doctor in his group.
The pulmonologist ordered a CAT scan of my lungs to see what was wrong. He said he thought the Scleroderma had gone into my lungs. He also ordered a biopsy of my lungs. The test results came back and showed that both lungs were scarred. The right lung was worse than the left. I had to stay in the hospital for four days. From that point on I have had to sleep with oxygen and also when I’m active. I have to nebulize three to four times a day and use my inhaler to help open up my lungs. My pulmonary doctor decided in December 2001 to order a test to see if there was any hypertension in my four arteries; the test came back clear. Thank God, that’s all I would have needed. I wasn’t so lucky in November 2005 because I was diagnosed with Pulmonary Hypertension in my lungs, on top of having Pulmonary Fibrosis. In November 2002 I left work on disability. I’m currently involved with a local Pulmonary Arterial Hypertension (PAH) Support Group. I also attend Tri-State’s educational seminars in New York City when I can. My large family has attended the Tri-State walkathon in Leonia, New Jersey since 2006. I cannot walk myself but, watching them walk for me has meant so much!
As a young woman my passion and hobby for needlepoint was taken away from me, when I got this disease. Then in 2007, I started to needlepoint again! It does hurt my fingers, but I look at it this way, it is good therapy for me. I just finished making needlepoint letters for my family, friends and for the hospital I currently go for tests. My disease has affected my family but also in a good way. My son Derrick especially has changed for the best. He has learned to not let anything stop him from living his dreams. One of his quotes that he loves to use is “The Tassel Was Worth the Hassle”. With this great attitude, he was Class President two years in a row and he also graduated Class Valedictorian from his high school in 2007. I was so proud to hear my son give his Valedictorian speech and so glad to see him graduate! He is now attending college and doing very well.
I have used my mother as an example to push myself. I have it in my head that I’m not going to give up. I am a wife and a mother. I have so much going for me; my family has been behind me 100%. After this whole ordeal I have told myself over and over again, not to give up. I have always kept a positive attitude, even to this day. I believe with any situation you must keep a positive attitude to keep going and to move forward. After all of this, I still have a smile on my face. I hope after reading this, you will also be inspired to never give up. Take it from me it can be done. I have done it and so can you!
The other photo is Amy’s family of walkers at the 2007 Leonia, NJ Scleroderma Walk.