Chronically Caring: Tales of a Foster Mom with Chronic Illness

Shelby's Story

Iowa

Age: 25-36

A little bit about my journey:

My Diagnosis

Myasthenia Gravis

Time to Get Diagnosed

3 Weeks

Year I was Diagnosed

2017

Sending Love to

Dr. Andrea Swenson

Hospital I'd Recommend

University of Iowa Hospitals and Clinics

This is my story:

In April 2017, my boyfriend of six years proposed to me in our apartment and we started to plan our wedding for the next August. Just a few weeks later, I graduated from Luther College in Iowa and took my board exams to become a Medical Laboratory Scientist. We were on top of the world and felt like we were finally starting our lives together.

There was one problem – I was noticing severe weakness in my arms, hands, jaw, and facial muscles. It started small – I would start slurring my words after talking for multiple minutes, I couldn’t open a jar, and I stopped working out because I was exhausted all of the time. I took my fatigue as a sign of an exhausted college student who just started her career. But weeks went by, and I was sleeping more and more, and I was consistently getting weaker. I pushed off seeing a doctor – I hadn’t gone to even a primary care doctor in years. But Preston and my grandma pushed, so I made an appointment.

After looking up my symptoms, I figured I just had a vitamin deficiency (I didn’t eat the best in college and I went out probably more than I should have), which is exactly what I told my doctor. She agreed that it could be a vitamin deficiency, but it could also be much more serious, and she wanted to send laboratory testing out for an autoimmune disease called Myasthenia gravis. I was reluctant, because I knew I didn’t have the money to pay a huge medical bill, but I agreed. A week later, we were still waiting on results, but I was sleeping 16-18 hours a day, and could barely function when I was awake. My then-fiance was worried and decided to take me into the Emergency Room.

After five days, many blood draws, an MRI, a chest x-ray, a spinal tap, and being seen by many specialists, I was sent home with little answers. We were still waiting on laboratory testing, but my doctors agreed I could wait at home. Two days later, on June 28th, 2017, I got a call from my neurologist that literally changed my whole life. The tests came back very conclusive – I had Myasthenia gravis.
From that point, I was scheduled for weekly occupational therapy and physical therapy appointments and put on many different medications to get my symptoms under control. I took a leave of absence from my new job and focused on my health, spending my days researching treatments, clinical trials, and support groups.

Dealing with my chronic illness has been a BATTLE. I have had a love/hate relationship with my body over the last three years, and I still struggle with it sometimes. I went through the stages of grief as I lost myself – or who I thought I was – and I’m learning to be me again.

However, this story isn’t all bad. Through this process, I have learned how much love I have and how much I want to help others. In early 2019, my husband and I decided to start taking classes to become foster parents. As of June 2020, we will be newly licensed foster parents and will be welcoming children into our homes and hearts very soon.

Let’s play 20 questions:

The song that keeps me going is:
Where Does the Good Go - Tegan and Sara
I never leave home without my:
Headphones
My go-to feel better movie is: 
Mamma Mia
If I was in the hospital, the celebrity I would most love to visit me would be:
Ellen Pompeo
When I need to relax, I:
Read
My favorite food is:
Peanut Butter M&Ms
The quote that keeps me going is:
“ One of the greatest signs of a strong will is being able to find a silver lining while fighting in the midst of the storm.” David Fajgenbaum
When I need a laugh, I:
Call a friend.
Meet my pets (or favorite stuffed animal):
Cats: Chloe (11 years old), Willow (4 years old), Iris (1 years old) Dogs: Rory (3 years old) and Lucy (2 years old) Guinea Pigs: Joey and Chandler (3 years old)
My hero is:
My grandma 💕
When I’m having a down day I binge watch:
Grey's Anatomy or Friends
My favorite book to get lost in is:
The Great Gatsby
I want to be best friends with:
Ellen Pompeo 🤩
The thing I’m most proud of:
Getting my Master’s degree and foster parent license while battling a chronic illness
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Becoming a Foster mom 💕
The most hilarious thing that has happened to me is:
On my first day of my laboratory scientist internship, I went to pour urine into a test tube, and ended up dumping it all over my new shoes. I still can’t live that down - almost 4 years later!
It really means a lot when someone does this:
Reaching out and tells me how I’ve impacted their life.
My favorite social media account to follow is:
Any with yummy recipes 😍
The advice I would give to myself back at the beginning of this journey would be:
Be patient and be kind to yourself. You’re doing the best you can.
Words of encouragement that I’d give to my fellow warriors are
Don’t give up. Keep fighting. You’re not alone.
Follow my journey:

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