As one of the faces of Scleroderma, I am Sara Sullivan. My journey has been marked by unforeseen trials that have tested my strength and resilience. My diseases have caused me pain and emotional distress, but they have also taught me valuable lessons. Despite these challenges, I remain a proud and beautiful individual and a dedicated mother of two remarkable young men.
What is scleroderma? At the age of 47 I’m still trying to figure that out. Medically, Scleroderma is an autoimmune disease of the connective tissue featuring skin thickening, spontaneous scarring, blood vessel disease, and varying degrees of inflammation associated with an over-active immune system.
Scleroderma is characterized by the formation of scar tissue (fibrosis) in the skin and potentially, the organs of the body. This leads to thickening and firmness of the involved skin.
For me, Scleroderma has meant numerous doctors’ appointments, tests, and routine blood work. It has also led to cataract surgeries, esophageal stretches, a total hysterectomy, a septoplasty, and most recently, the implantation of a pacemaker. I also experience fatigue and side effects from medications that don’t seem to help but keep me alive.
My Diagnoses Include:
Scleroderma with CREST Syndrome, Bradycardia, Hypothyroidism, Adrenal Deficiency, GERD, IBSC, Meningioma, Depression, COPD, Sick Sinus Syndrome
5 Invisible Symptoms
- Calcinosis – Calcium deposits in the skin.
- Raynaud’s Phenomenon – spasms of blood vessels in response to cold or stress.
- Esophageal Dysfunction – acid reflux and decrease in motility of esophagus.
- Sclerodactyly – thickening and tightening of the skin on the fingers and hands.
- Telangiectasias – dilation of capillaries causing red marks on surface of the skin.
4 Things That Help Me Manage Pain
The Synergy of:
- Cannabinoids
- Music
- Positive Thinking
- Supportive Relationships
3 Ways My Life Has Changed
- My life has undergone a transformation, and I no longer hold a job. My health is now my main occupation, requiring my full attention and care.
- I have had to adjust my approach to life, taking care to balance my ambitions with my physical limitations. This has involved being more mindful of my body’s needs and moderating my pace accordingly.
- I no longer take each day for granted. I advocate for myself (and others) to educate about my condition.
2 People Who Inspire Me
- Well, I wish with all my might she was here to help me through this, but I’m glad she is watching over me instead. My Mom is the reason I advocate so hard. Maybe if she had had someone to advocate for her or had known what to look for, she would still be here. She is, and always will be, my hero.
- The other person who inspires me is a beautiful young woman. Someone I’ve seen at her best and at her worst. She’s the one I think of on days when I want to give up, but I don’t. She has shown me what being strong really means. Not only is she my favorite zebra she is Katie Dama-Jaskolski.
1 Thing You Want People to Know
I’m not contagious. I’m not seeking attention. I’m not a hypochondriac. My body is at war with itself. I’m not an addict. I’m not crazy. I deserve quality of life. I’m not lazy. I did not want, nor did I choose this. I battle every day to get out of bed.
I want to work… I want to be productive. This is not easy nor fun. I don’t enjoy it. I feel like I’m trapped in a broken body. The hardest thing I ever had to do was learn to slow down and not do everything. I struggle with this to this day. I hate feeling left out, having to choose to stay home, or not getting things done that I wanted to. Everything else comes so easy, but for me, it’s 100 little jobs in one. I need to think about the weather and the whole day’s plan before I can attack any one given thing. I have to attack it and make a plan like I’m strategizing a war.
That lifestyle is the difference between being healthy and sick. Being healthy is the
beautiful ability to not think and just do. I miss that freedom.