Every month we shine the spotlight on an inspirational “zebra,” organization, or event that helps bring visibility to invisible illnesses. This month’s Zebra Spotlight shines bright on…
Stephanie Kronberg
My name is Stephanie Kronberg. I’m a wife, mom, sister, daughter, friend, part time preschool
teacher, and now a ZEBRA. I could go on and on about all of my roles but what I really want to
share is my journey of trying to find answers about what was happening to me.
As a child I had severe asthma, allergies, and eczema. I had many ear infections and tubes
multiple times. Every time a doctor would look in my ears they would comment on the amount of
scarring. I recall missing lots of school and many trips to the ER because my asthma was out of
control. To say that I was used to feeling crummy is an understatement.
When I was 24, I ended up in the hospital for four days with a bowel blockage and a small
hernia. After that visit, I began seeing a gastroenterologist who wanted me to have a
colonoscopy and endoscopy. They didn’t find much but I was diagnosed with irritable bowel
syndrome.
A few years later I was ready to become a mom and it wasn’t happening as expected. I was
having fertility issues and needed to take medication to help the process along. Thankfully it
didn’t take too long, and I became pregnant. I was beyond thrilled! What I was not so excited
about was how growing a baby was so hard on my body! I had to wear a special belly belt to
help support the weight of the baby. It was tough but we ended up with a decent delivery and a
healthy baby boy.
Life was good! I was a mom! I had my normal symptoms flare up from time to time but nothing
too concerning. Then a couple years later I was pregnant again. This time it happened naturally.
We were elated! Sadly, after 6 weeks I had a miscarriage. My husband and I knew we wanted a
second child, so when I was able, I took the fertility medication again and was blessed with
another baby. I thought my first pregnancy was hard, but this pregnancy was even harder! Not
only did I have to wear that belly belt, but I also needed a V sling and compression socks. It was
quite the challenge getting dressed in all of that, especially in the hotter months as I neared my
due date of July 2015. My daughter entered this world in a hurry, and we now had a boy and
girl. I was DONE! I knew my body would not be able to handle a third baby, so I had my tubes
tied.
My body was going through lots of changes with recovering from pregnancy and from nursing.
When my daughter was about four months old, out of the blue, I had terrible pain all over my
body. It was so bad I had a hard time caring for my kids while my husband was at work. I
needed my mom to come help me. My doctor ran blood work, even checking for Lyme Disease.
Nothing showed up but she sent me home with prednisone. After about a week, I was back to
normal.
Fast forward to mid 2018 and my legs started to feel strange. They were painful but in a weird
way. I developed spider veins on my legs that were concerning and uncomfortable. I went to a
cardiovascular doctor who found that I did have some vein reflux and encouraged the use of
compression socks.
In 2019, I was referred to both a rheumatologist and DO for OMM (Osteopathic Manipulative
Medicine). The rheumatologist diagnosed me with Joint Hypermobility Syndrome. After seeing
my OMM every six-eight weeks for a good year, he insisted that there was more going on. I
went back to my rheumatologist and mentioned how I felt that there was more going on with my
body, and that my DO could feel a lot of inflammation, knots, and how out of whack my body was at every visit. Fibromyalgia was then put on the table. Each time I received a diagnosis I felt a little lighter. Like, okay this could be it. But in my gut, I didn’t think it was fibromyalgia. I ended up crossing paths with Katie (LAAZF co-founder) in 2022.
She was able to get me in contact with a new rheumatologist. At my first appointment, the
new doctor diagnosed me with Hypermobile Ehlers-Danlos Syndrome. She told me I passed
with flying colors. I went home and looked it up. It was like a lightbulb went off! This is it! hEDS
is very complex. It can affect multiple body systems–musculoskeletal, neurological,
dermatological, cardiovascular, gastrointestinal, and immunological. This is why I had to go to
so many specialists throughout my life, and why I had such a hard time finding answers.
Early on in my journey, I had read that it wasn’t uncommon for it to take many years to find the
right diagnosis. It took me about six years to find out I’m a Zebra.
FIVE “invisible” symptoms of your illness:
- Muscle tightness and knots.
- Digestion problems.
- Joint pain (most frequently in the shoulders, hips, and knees).
- Easily fatigued with lots of brain fog.
- Heat and cold intolerance.
FOUR things you do to manage your illness:
- A combination of prescription drugs, vitamins, and minerals. (Zoloft, Wellbutrin, Lyrica, Sulindac, Adderall, D3, Super B complex methylated with vitamin C, turmeric, glucosamine chondroitin, MiraLAX, magnesium, pro and prebiotics.) Lots of fiber and trying to drink more water. Sometimes some of the huge pills are hard for me to swallow so I will take a break from those periodically.
- Heat is a huge comfort to me! While at home I enjoy heating pads and HOT Epsom salt baths. When I leave the house, I often have hot hands in my pockets, and I use heat therapy patches for my shoulder and lower back pain.
- I go to my amazing OMM doctor every 6-8 weeks to get an adjustment. These appointments help me get some good pain relief. I only wish I could go every month.
- I like to do light yoga and ride on my recumbent bike a few times a week. Walks through the park with my family are my favorite! No matter what it is I’m doing though, I have to remember not to overdo it.
THREE ways your life has changed as a result of your illness:
- I have many doctor appointments with different specialists.
- I have to ask for help a lot more than I would like to. I’m often too weak to open, lift or move things and will need someone to do it for me.
- I have anxiety about talking with people because I stumble over my words and thoughts. In the middle of a conversation, I will have words escape me and I lose my train of thought. When that happens it’s very embarrassing! I prefer to sit and listen and observe what others are saying and doing.
TWO people who inspire you or give you hope:
- My best friend Teren is a huge inspiration to me! She has bravely battled MS the last 13 years. She has experienced multiple bumps in the road with her health but continues to keep her head up and push through no matter the obstacles she faces. She may have some limitations, but to my kids and me, she is amazing just the way she is! Her smile and giggles are the best! Teren is always the one person I can talk to about any and all of my medical issues because she understands and never shows judgment. She cares about me and will ask about appointments and test results. I cherish our friendship and I know she will always inspire me to keep going.
- My late Grandma. She passed away in May 2022. Wow, almost a whole year without MY Grandma. I say that because my brother and I were her only grandchildren. It’s not often you get your grandparents all to yourself. My grandparents did a lot for me growing up. It wasn’t until I was a young adult that I found out that they had many health issues throughout my youth that I never knew about because they always put on a happy face in front of me. That would explain all the rice bags grandma was always warming up in the microwave! My grandparent’s love for each other was something truly beautiful! Grandma was by grandpa’s side until the very end. Even though my grandpa was gone, she knew she had to keep living her life and that she did. She moved to a smaller house and spent time with her great grandkids. In 2015, my grandma had a stroke, and it was the scariest thing to see. She worked very hard doing all kinds of therapy and slowly got better enough to go home. She taught me that there will be setbacks in life, but to keep going one day at a time. She showed me that being vulnerable with the ones you love is okay. The last year of my grandma’s life, as she battled lung cancer, I was able to put all my walls down and openly discuss life, wealth, and health with her. She had nothing but compassion for what I was going through and encouraged me to be my own advocate and do whatever it was that needed to be done. If I live my life half the way she did, I will be okay.
ONE thing you want people to know about life with invisible illness:
- Living with an invisible illness can be very lonely. If you don’t feel understood by family or friends, join support groups. Facebook has many! When you hear other people’s stories, it gives you a feeling of belonging and being accepted. It also provides you a place to share your story and maybe even make an impact on someone else. Every time I’m vulnerable and share my story with another person, I feel a sense of empowerment. Find your “zeal” of zebras and dazzle on!