Profiles in Courage: My Scleroderma Journey by Erica S. from Nevada
This is the first in our series of telling the stories of everyday heroes who face scleroderma head-on. Thank you Erica, for your courage and honesty and words of inspiration.
Whoo boy! Where to start? I suppose at the beginning is as good as any place. To be honest, I knew something wasn’t right way before I knew that I had scleroderma. I have been a nursing student and certified nursing assistant for 6 years. Not only that, but my grandmother, my Michigan mom, her daughter and one of my patients have suffered with lupus. Even though lupus is definitely not scleroderma, some of the signs are very similar. But life gets busy, and you learn to adapt, cope and you brush things under the rug. Until you can’t anymore.
That day came for me in September of 2014. I went to a quick care clinic with what I assumed was the beginning of the flu. Achy everywhere, severely fatigued, etc. When the doctor couldn’t find any evidence of the flu, he ran an ANA (Anti-Nuclear Antibody) test. “Just in case”, he said. I was sent home with orders for a day off and plenty of fluids. And that ‘just in case’ became the first of many tests to verify my diagnosis: Systemic Scleroderma.
My Scleroderma Symptoms
My scleroderma has had very little effect on my skin so far. Some changes in my hands but for the most part it’s my insides that are getting pummeled. I suffer severe GERD (Gastroesophageal Reflux Disease) and constriction of my blood vessels. I have Raynaud’s phenomenon, which causes my toes and fingers to turn many shades of blue, purple, white and red whenever I am cold or over stressed. And I have chronic pain all over my body and severe fatigue.
Fighting this disease also has quite an emotional toll. I lost my job at the nursing home I worked in. I was carted out in an ambulance on my last day there. I have had depression and anxiety because of all of the changes that have happened as my symptoms increased in severity.
This a very hard disease. It sucks. Not just for me, but for my husband and kids as well.
But to be honest, that’s not the most important thing I want you to take from this. There are some things I want you to know.
Get Angry, Cry, Lay in Bed When You Need To
If you are fighting this disease, you need to know that it is OK to feel bad about what is happening to you. Process it, get angry, cry, lay in bed on days you need to, reach out and ask for help when you need it. But don’t ever lie down and let it defeat you. You are going to have to be your own advocate. So few medical professionals know about scleroderma. You’ll have to fight for yourself to get proper pain relief, medication to slow progression, medication to help with all the other symptoms. Don’t be afraid to switch doctors if you don’t feel that you are being taken seriously.
Having Support Can Make All the Difference
If someone you love has scleroderma, it is going to mean more than anything to them to have your support. My husband has gone to so many doctors and hospital visits with me. Some days I hurt so badly I can’t get out of bed. It’s those days that having someone to talk to, cry to, or even just hold my hand is the difference between wanting to just give up or fighting on. Be there. Help spread awareness. Let them know that you understand that they are fighting an uphill battle.
If you are just finding out about this disease, spread the word! The more people that learn about scleroderma the better! Awareness leads to more research and more research can lead to a cure!
Until then, if you have scleroderma, I send you strength, hope, and gentle hugs. If you are a friend I send you thanks and encouragement. If you are just learning about scleroderma, I bid you welcome. Thank you for taking the time to learn about us.
For education about caring for fragile skin, support and product information please visit our scleroderma skin care pages here: http://welmedixhomecarepro.com/sclerodermaskincare/.
For more information about scleroderma and the Scleroderma Foundation’s annual conference July 29-31, 2016 in New Orleans please visit www.scleroderma.org]