2017 Stepping Out - Geneva, IL (Greater Chicago Chapter)

Team Rachael

RACHAEL'S STORY

In 2002 I was diagnosed with "lupus" after the birth of my son. I noticed I was very fatigued and had very poor circulation to my hands and feet. I was seen by numerous doctors that didn't agree with the lupus diagnosis. My doctor at the time referred me to a new rheumatologist and was diagnosed with scleroderma. At the time the doctor gave me so much information and all I understood was " there is no cure". As the disease started to progress I started to experience more symptoms of scleroderma Fatigue, skin changes and achy joints but nothing that stopped me from doing my daily functions. Some facial changes and skin discolorations I also had some skin redness but nothing that make up couldn't fix. As time progressed I got pregnant with my third child. I was hoping that I would be one of the 75 percent of women that experience a remission during pregnancy. Unfortunately that was not the case. I started to experience joint pain that made it impossible to do my daily functions. I experienced pain and stiffness in both my hands and feet. I had to get numerous prednisone injections just to walk. It was hard to shower and dress myself. At times I had to have my husband help me get dressed and put my shoes on. I later started to experience trouble breathing with any activity. My rheumatologist did all he could for me. Since I was pregnant I was very limited on what I could take. After I gave birth I noticed that some of the symptoms subsided. My rheumatologist started me on prednisone and auto immune drugs right away. This helped but didn't make it much better. Two months later I began to experience chest pain and then shortness of breath. I couldn't walk up and down stairs without getting winded. August of 2016 I woke up and had trouble breathing, fever and extreme chest pain. I went to the hospital and was admitted for pneumonia. This was a week long admission. Full of tests and guessing what could be wrong. I was sent home and one month later I was in for my second admission with pneumonia. My rheumatologist and lung specialists worked hard to try to find a way to stop the pneumonia from progressing. Everything they tried didn't work. So they stared me on a Chemo drug called Cytoxin. The side effects were not good. I lost most of my hair and it upset my stomach pretty bad. I seen my doctors for a follow up and testing. The tests showed improvement! I am now on an autoimmune drug and that seems to be helping. I am still short of breath and was diagnosed with pulmonary hypertension. I now have supplemental oxygen. I am now seeing a gastroenterologist to address my new issues. Trouble swallowing, heart burn and irregular bowls. It feels like when I fix one issue then another part of my body is effected. I feel like I have the body of a women in her 70's and I am only 35. Scleroderma has stolen the life I once knew and had. I use to have a life full of activity and was able to do almost anything I wanted to do.   At this point in my journey I feel I have gained so much. It's taught me that I am a lot stronger than I ever thought I was. I do not let my illness define me. I am a fighter and I have wonderful family, friends, husband and a great group of doctors that support me. I know someday we will find a cure. I hope that you all will help me raise money to find a cure for this dreadful disease

 

Thank you for visiting my Team Fundraising page to support the "Stepping Out to Cure Scleroderma" event!

Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to support my team’s effort to raise funds for people living with scleroderma. To make a donation, click on one of the team members to make a gift towards their fundraising effort to help our team.

If you would like to join our team at the event, and walk and help raise funds, please click on “Join My Team” and follow the directions.

Please help today! Our team sincerely appreciates your support, and we ask you to please share this with anyone who you think might want to help.

Help our team bring more awareness to scleroderma so we can find a cure!

View More
View More