‘I had a once in a lifetime, freak emergency. When I tell doctors what happened, they don’t believe me.’: Chronic illness warrior urges ‘hold on to joy’

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“I don’t think anyone is prepared to have their lives drastically change for the worse, whether it’s a death in the family, the loss of a job or in my instance, a debilitating health crisis. There’s no guidebook on what to do when you get a health diagnosis that totally changes the trajectory of your life. No one prepares you for the moment your doctor looks at you and explains you have an incurable condition that will require life long treatment and leave you with plenty of curveballs thrown your way in the future.

I was diagnosed with Systemic Lupus Erythematosus (SLE) in March of this year, 2021. But I have been battling this disease for far longer. In my case, getting the diagnosis of lupus was extremely difficult for many reasons. My family and close ones started thinking I had Lupus around May of 2019. Not only did I have the debilitating symptoms of fatigue, joint pain, swelling, fevers, hair loss, nausea, malar rash, mouth ulcers, brain fog, memory loss, and Raynaud’s, but the worst ‘symptom’—organ involvement. Lupus was attacking my kidneys, bladder, ovaries, thyroid, liver, and brain.

girl with malar lupus rash and breathing tube
Courtesy of Samantha Gehrls

A main problem we had in getting a diagnosis was my numbers on blood tests did not match those of someone with active Lupus involvement. I had the inflammatory markers, but my ANA and other Lupus markers would change from positive to negative often and doctors just couldn’t see past it. The most common phrase I would hear from doctors is, ‘You are so complex and have a very complicated case but there’s no clear answer as to what’s causing what is happening in your body.’ Finally, we got in front of a rheumatologist (my fourth one) who was able to look past the numbers, yet still feel totally sure I had SLE. I can’t even begin to tell you how I felt during that appointment when I finally got the answers we have been looking for for so long.

young girl playing soccer
Courtesy of Samantha Gehrls

Looking back at my 25 years, there are so many clear signs I have had Lupus for awhile. I was a really healthy kid growing up. I was super active and found a passion for soccer. I played for many years, most of them on a competitive travel team. I was a left defender and loved my team, the position and the sport so much. By 12, I was having knee issues. Upon a doctor’s visit, I was diagnosed with a rare cartilage disease called Osteochondritis Dessicans. From age 12-19, I underwent a total of five open knee surgeries. I was out of commission so long from the knee surgeries I wasn’t even aware I had a ruptured disc that required a spinal fusion on my L4-L5 vertebrae’s when I was 14.

The first huge loss I had in life due to my health was when my doctors told me I couldn’t return back to soccer. To this day, it’s a loss that strikes me at my core. It was the first time I also lost the ability to do something I loved and was all of who I was at the time. Recovering from the multiple knee surgeries and then the back surgery lasted all the way into my freshman year of high school. At the time, we just were thrilled that eventually the surgeries worked and I was able to return to normal life, minus any more soccer.

knee surgery
Courtesy of Samantha Gehrls

People say lightning doesn’t strike twice… but it did again when I was 20 years old. I had what has been called a once in a lifetime, freak medical emergency that, still to this day, when I tell doctors what happened, they don’t believe me. I had some severe pain on my right side that wouldn’t go away. My dad took me to the ER, where they found a tiny two millimeter kidney stone. They sent me home and told me it would pass easily. 2 days later, I was in so much pain and had now developed a fever, so we went back to the ER where they told me I had stage 4 kidney failure. A two-millimeter Klebsiella infected kidney stone was embedded in my ureter, causing septic shock and pylonephritis. I was immediately taken to the ICU, where the fight of my life would begin. I was hospitalized for over 40 days while they tried to save me and my kidney, but unfortunately, they had to do a full nephrectomy (remove my kidney). To this day, I have PTSD from events that occurred in the hospital during those 40 days, it was traumatic and life-changing.

For over 40 days, the medical team fought my sepsis caused by my kidney failure and surgery. I was on so many antibiotics for so long it destroyed all of the bacteria in my digestive tract. I got a serious infection called C. Diff. Colitis which led me to need a fecal transplant. YES, that is exactly what it sounds like! Soon after, I lost all of my hair as well. The doctors were puzzled on why I lost my hair, blaming it on the traumatic events that happened in the hospital. But now, we know I lost all my hair because of Lupus… it’s actually very common in the Lupus world. But, this was another rock bottom low point for me.

I remember vividly having my hairdresser touch up my balding head so we could restart the growth process. My mom and I sobbed as he was doing it. I wore a wig for about a year. I was so embarrassed about it. Most people just thought it was my normal hair because I didn’t tell anyone. Hair makes us feel feminine and pretty and without it, I felt ugly and damaged. But I stayed strong and eventually, my hair grew back and now it’s healthier than ever. I hope and pray every single day lupus doesn’t take my hair away again. My doctors swore this was a unique occurrence they had never seen before. Fast forward to recently, when I got diagnosed with Lupus Nephritis/kidney disease due to lupus. The amount of times my kidney failure is now referenced in my case is astounding and we are now dealing with an unhealthy left kidney.

young girl getting fitted for a wig
Courtesy of Samantha Gehrls

If they say lightning doesn’t strike twice, I would imagine it wouldn’t strike three times, but it did for me. It was February 2019, I was supposed to have a spinal fusion for my Degenerative Disc Disease. But 4 days before my scheduled surgery, I was rushed by ambulance to the hospital where they would soon find I had Deep Vein Thrombosis (DVT, a blood clot) all the way from my ankle to my stomach in my left leg. It caused so much damage they were shocked they didn’t have to amputate my leg.

While I was in the hospital for over 2 weeks, so much was happening, I couldn’t process how sick I was. Things took a turn for the worse when part of my blood clot broke off in my leg and traveled to my lungs to form multiple Pulmonary Embolisms. I have a vivid memory of 15+ doctors and nurses rushing in, they called a code Stemi and brought the crash cart in. My nurse was an angel that day and I’m so thankful she was there because she was talking to me trying to keep me calm while they got ready to push medicine that would stop and restart my heart. I could hear them explaining what was going to happen to my parents, as I saw tears starting to flow and a petrified look on their faces. I closed my eyes.

young girl in the hospital
Courtesy of Samantha Gehrls

Next thing I remember, I woke up in ICU. I was so confused. So sick. But I was alive. I made it. They diagnosed me with a rare blood clotting and autoimmune disease called Antiphospholipid Syndrome. It was the reason I had such a severe clot. They started me on Coumadin (a blood thinner), put me on a low Vitamin K diet, and require me to check my blood clotting levels multiple times a week. Antiphospholipid Syndrome and Lupus can actually go hand in hand. After my DVT, things really went downhill. They discovered bladder paralysis that requires me to use a catheter and also irrigate (rinse out) my bladder every day, diaphragm paralysis (requiring me to be on four liters of oxygen 24/7), a rare brain tumor that is benign but inoperable, PCOS and multiple bursting ovarian cysts, hypothyroidism due to Hashimoto’s (an autoimmune disease that attacks your thyroid), Interstitial Cystitis (painful bladder syndrome), iron deficient anemia, Hepatic Steatosis, and a couple other conditions.

I mentioned above getting the diagnosis of Lupus was extremely hard for me and another reason for that was the pandemic. The pandemic changed everything for everyone, but for me… the most drastic way it effected my life was the frequent hospitalizations with no visitors. Due to Covid, hospitals changed their visitor policy so you were not able to have ANYONE with you the entire duration, not in the ER and not in your admitted room either. This was so beyond difficult for me. Up until Covid started, my parents did a lot of the talking to doctors and nurses. A doctor would ask a question and I would look to my dad or mom to answer. This was for a couple reasons, but the main one being I didn’t know how to advocate for myself. I was so lost in my illness. I was exhausted, scared, and intimidated by these doctors who swore nothing was wrong.

friends in hospital wearing ppe
Courtesy of Samantha Gehrls

I was hospitalized 15 times last year, alone, for kidney infections and brutal UTI’s. This took me into a deep hole. The first couple of hospitalizations without my parents were the hardest. But then I got in a good groove and man did my confidence just soar! I was able to communicate with my team exactly what I was feeling, exactly what was helping and not, and I told them exactly how I felt if I disagreed with something they were throwing out. While many tears were shed, and multiple panic attacks happened… I am so thankful for the Covid year taking me to a place within myself I would have never got to. EVER. I am an amazing advocate for myself and have a crazy amount of resilience and hope. I know if I could get through those times, I could get through any.

girl in hospital making muscle
Courtesy of Samantha Gehrls

I dread waking up every morning because I know I will be facing debilitating symptoms throughout the day. The severity varies… there’s good-ish days, bad days, and really bad days my dad coined as ‘suffering.’ I’ve really worked hard over the past year to take advantage of all good moments of the day I can. If I wake up and am having a low pain/symptom day, I will have my parents take me on a drive, have friends over, work on my blog, go on a walk and do things that bring me joy. Because on the bad days and the suffering days, I have to be able to pull the hope from any moments I can. I have to remember there is good in this life too, not just pain and suffering. That’s a huge tip I have for anyone dealing with Lupus or other autoimmune chronic illnesses. Find your joy, and when you can… take advantage of that joy. And hold on to that joy. It will bring you hope.

I think the biggest tip I have for those suffering with undiagnosed (or even diagnosed) illnesses is keep pushing for answers. Just because one doctor tells you something doesn’t mean it’s true or right. I have seen multiple doctors in the same specialities just to find some who were on the same wavelength or my parents and I. There are SO many doctors out there, don’t get discouraged if you have a bad appointment or a bad interaction with a doctor. You know your body better than anyone else, truly. So don’t stop fighting for answers. We had to take a 6-month break at one point… where we stopped diagnosis searching and saw no new doctors. It was an amazing decision because we got the refresh we needed to keep going. And then, we got answers. So have hope. Keep pushing. Don’t give up on finding answers.

Woman in hospital
Courtesy of Samantha Gehrls

My journey is far from over, my fight is stronger than ever, my support system is locked in place. I know this mysterious disease is going to throw a lot at me and I know there will be lots of days when I don’t think I’ll be able to make it through. But, I need to remember I am unbelievably strong and resilient and have all the tools to get through the hard times. I’ve been through a lot but I have hope to share with the community of chronic illness fighters and I hope showing my fight will help others find theirs.”

family portrait outside
Courtesy of Samantha Gehrls

This story was submitted to Love What Matters by Samantha Gehrls from Orange County, California. You can follow her journey on Instagram and her blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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