Fighting through the pain

ashley_scleroderma_lupus

Ashley's Story

Edmond, OK

Age: 25-36

A little bit about my journey:

My Diagnosis

Scleroderma, Lupus

Time to Get Diagnosed

6 years

Year I was Diagnosed

2018

Sending Love to

Dr Gallardo, Dr Wright, Dr Wheeler

Hospital I'd Recommend

Integris

This is my story:

I started experiencing issues with chronic joint pain in my teens. I’m 31, and was 29 when I got my diagnosis. I lived through my early 20s with so many doctors and people telling me I was way too young to have the joint pain and stiffness that I had. They thought I was making it up. This made me sink into depression. Then I became pregnant with my son in 2016. Oddly while I was pregnant, the joint pain subsided. I felt the best I had in years. I started thinking maybe it really was all in my head. I gave birth to the most perfect boy in September 2016. Shortly after all my symptoms came crashing down on me. The fatigue and joint pain was debilitating, but I had a newborn to care for and doctors just thought I was tired from being a new mom. Luckily, my husband is such a great father and really stepped up to help. At one of our pediatric appointments with our new family doctor, Dr Heather Wheeler, who we started seeing after my son was born I mentioned how exhausted I was. She is a lupus warrior herself and recognized the malar butterfly rash on my face. She asked me what other symptoms I had. I told her about the random sores I would get in my nose, the fatigue, joint pain, stiffness in my hands so bad that I dropped things all the time. She ordered some tests for me including antibody labs. No surprise – my bloodwork came back positive for the Centromere B, which is most commonly found in people with scleroderma, CREST syndrome, and Sjögren’s syndrome. I was referred to rheumatology. After extensive bloodwork, questions about my symptoms and health history, and lots of tears, I was diagnosed with Lupus, Scleroderma, and Polyarthritis. I was started on several different medications and referred to a pain management doctor as well. Two hip surgeries, one shoulder surgery, and several flares and hospital visits later, my symptoms are mostly manageable on a daily basis now. I still have high pain days. I still have unexplained nausea and vomiting. Scleroderma can cause hardening of organs due to your body’s overproduction of collagen. My rheumatologist has referred me to a GI specialist, and we will go down that route once the COVID-19 crisis is a little more under control. She suspects I have gastroparesis caused by scleroderma and aggravated by my long term opioid use. I have been on them for about two years to help manage my chronic pain. I asked my rheumatologist recently about my future and if baby number two would be an option. She thinks I’m healthy enough and also told me that pregnancy can sometimes make autoimmune diseases go into remission due to baby’s stem cells. I’m nearly 100% sure this is why I felt so great during my pregnancy. I’m just living life one day at a time. I’m so thankful for Dr. Wheeler. Had she not suggested that antibody test nearly three years ago, I would probably still be clueless as to what was going on. Most days are manageable now thanks to my healthcare team and trying to eat cleaner has really helped too.

Let’s play 20 questions:

The song that keeps me going is:
Hurricane - Halsey. Really pretty much anything by her
I never leave home without my:
Phone and airpods
My go-to feel better movie is: 
Grease
If I was in the hospital, the celebrity I would most love to visit me would be:
Lady Gaga
When I need to relax, I:
Take a bubble bath
My favorite food is:
Tacos
The quote that keeps me going is:
”If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” – Martin Luther King Jr.
When I need a laugh, I:
Listen to the My Favorite Murder podcast
Meet my pets (or favorite stuffed animal):
Paisley (13 year old Yorkie) Aspen (6 year old Great Dane) Montgomery (8 month old Great Dane) Ted (8 year old cat)
My hero is:
I have several, a few are my mom, my son, and Michael J. Fox
When I’m having a down day I binge watch:
Breaking Bad
My favorite book to get lost in is:
Harry Potter series
I want to be best friends with:
Brittany Furlan Lee
The thing I’m most proud of:
My sweet little boy
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
It has brought my family and I so much closer together
The most hilarious thing that has happened to me is:
There are so many things! My son is a little comedian so he always keeps me laughing
It really means a lot when someone does this:
Let’s me vent with no judgment
My favorite social media account to follow is:
I have so many. They are mostly fellow chronic illness warriors and dog accounts on Instagram
The advice I would give to myself back at the beginning of this journey would be:
Be your own advocate, no one else will
Words of encouragement that I’d give to my fellow warriors are
I understand what you’re going through. I can’t promise things will be better, but I can promise you’re not alone
Follow my journey:

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