My Best Year Yet: Living with Systemic Sclerosis
Esthela
State: Colorado
Congressional District:
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Diseases
Chronic Pain, Ear / Nose / Throat Disease, Gastrointestinal Disease, Immune Disease, Rare Disease, Urological Disease
Issues and Challenges
Esthela has encountered: Caregiving
My Story
This is my best year yet; I finally feel like I can concentrate at work, enjoy my hobbies, and have a life. Chronic illnesses are interesting; it's like having a less-than-desirable roommate on your body. I made the conscious decision to adapt accordingly. Life is uncertain, but my eagerness to take care of and treat my body is not.
The last memory I had of a “normal life” was in the summer of 1994, while rollerblading with a friend in downtown Sterling, CO. I wonder what happened to him, and I wonder what happened to me. As a high school graduate, I had big hopes of attending junior college that fall. That never happened; instead, I started to live a life I thought I wanted. My body had ideas of its own; it started to live its own life and began changing.
I immigrated to this country with my parents at the age of 10 from Mexico. We had only lived in the US for six years when I started having health issues, and we didn’t know much or anything about health insurance or general health care in this country. The only exposure my parents had to healthcare was getting my vaccinations at the local health department so I could enroll in school. Things were a little different in healthcare 30 years ago, especially in rural Sterling, CO.
My body changed drastically at the age of 17, changes included unexplained swelling, loss of hair, skin issues, joint pain, etc. All the markers and symptoms sound too familiar now as I learn about autoimmune conditions. Trying to make it in this country, and as the youngest sibling, I left the obligation to take care of my parents while denying myself the very essentials of self-care for years. In the late 90’s and 2000’s, I ended up in the hospital with chronic bladder problems and a diagnosis of Interstitial Cystitis. My bladder went wild; I now believe it was a way for my body to ask me to pay attention. At that time, I was introduced to a positive ANA. It would take 16 more years for me to be brave and start taking care of my body. People ask me why I let my symptoms go on so long; I don’t really have an answer. All I can say is that living and caring for others can be done, but with a conscious decision to put yourself first. It is like the concept in an airplane of putting on your own oxygen mask first, then helping others; instead, I gave them my mask.
The Systemic Sclerosis diagnosis was a relief for me; it came about seven years ago. As a hardcore academic, I embarked on a learning journey, was excited to meet new people (physicians and people with Scleroderma), but most importantly, I started taking care of myself. I don’t know if I waited too long, as I believe God’s timing is perfect. Treatment and self-care are slowly taking me back to 1994, where I left off. My body is feeling better; it will never be the same as before, but it is better. I focus on what I have, not what I am missing, while embracing self-care.
This is my best year yet.
My Motivation and Inspiration
Myself, I can do better.
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