1972

I was diagnosed at age 2 with Juvenile Rheumatoid Arthritis after a week long stay in the hospital, upon complaining that my legs hurt. In 1972 parents weren’t allowed to stay with their children so I was alone most of the time. I was told that they had trouble finding a good vein (a challenge to this day) so they used my neck.

Fast forward to my earliest memories with this disease. Grade school was extremely difficult — by the time I was five years old, the JRA was attacking my ankles and knees mostly but would eventually attack every joint in my body and I hurt all over. I’d wake up extra early to soak in a steaming hot bath and take medication every single day and night so that I could function. I couldn’t walk the two blocks to school with my classmates because it was too far. In gym class, I had to sit on the stage and watch everybody else have fun and play. I couldn’t sit on the hard gym floor during assemblies so I took a seat on the sideline with the teachers. I hurt so much that I couldn’t make it across the field to the playground and had to hang out by myself or with the teachers who never provided me a seat because they were unaware. I couldn’t focus on school work and felt so different than all the other kids. I couldn’t walk home from school so I’d wait up to an hour sometimes in the office for the cab to pick me up because both my parents worked and the taxi company had forgotten me.

I missed a lot of school because of doctor appointments and suffered through countless blood draws of tiny veins that rarely cooperated. I learned how to “read” x-rays by the age of 8. Monthly gold injections became the norm and enormous needles drained my giant swollen-grapefruit-knees. There was often PT with endless lists of take-home ROM exercises to keep my joints from freezing up, which I hated, and rarely completed. It was difficult to play with neighborhood friends; to keep up with them on a bike, to play hide-and-seek because I could never get away fast enough.

The world was a very lonely place. I spent a lot of my childhood alone, inside and by myself. I had a lot of time to think and I pondered the big questions about life — the type of things that most people don’t even begin to question until maturity — if at all. I viewed the world as unfair, uncaring, unknowing. I felt so isolated, sad, angry and depressed. I questioned why God would allow a child to suffer so much…

1982

Thankfully, by middle school, the active inflammatory JRA finally quieted down a bit and I was able to have some fun, make more friends and just be a kid. However, the damage caused by 10 years of the disease had begun to take a toll on my joints and this part of the disease — the breaking down and eroding of cartilage and damaging bones and surrounding soft tissues — continues to this day. My first surgery was at age 12 for a loose knee-cap. The surgery didn’t work and that knee-cap slid back-and-forth for 40 more years until I finally had it totally replaced. My second surgery I was 15 and a sophomore in high school. I woke up one morning and couldn’t move my left ring finger; the arthritis had eroded my wrist which severed through the tendon causing my finger not work anymore.

1988

My freshman year in college I fractured my calcaneus, or heel bone, from walking too much. On the up side, I was allowed to have a car on campus. That’s when I obtained a handicapped placard — at the ripe old age of 18!

1999

When I was 29, and newly married, my left hip started locking up and causing excruciating pain. There was no more cartilage left and it had to be replaced. That was my first joint replacement, a total hip, which is still going strong 23 years later (touch wood!)

2003

When I was 33, and pregnant with my first son, I contracted Viral Meningitis and was taking Vicodin (per my doctor) so that my head would not explode. Two months later we found out there was something wrong with our baby. After several blood tests and ultrasounds it was confirmed that he had a neck mass. During the remainder of the pregnancy, I had countless ultrasounds and MRIs. Thankfully the mass was growing at the same rate as him so I was able to proceed with the pregnancy. Two weeks before Dylan was due, our hospital told us they wouldn’t deliver him because we were too high risk and were transferred to U of M where we knew nobody. At my 40-week check up they noted his heart rate dropping, admitted me and began Pitocin. I labored painfully until dilated to a six before getting an epidural.

Eventually his heart rate dropped again and they performed an emergency C-section. The cord was wrapped around his neck three times and he couldn’t breathe because the tumor encroached his airway. He was whisked away immediately and intubated. Baby Dylan had life-saving surgery at five days old. He stayed in the NICU for three weeks until we could finally take him home. During that time we stayed at the adjoining hospital hotel while I recovered from the C-section and was pumping breast milk around the clock.

During the first year of his life we fought to keep his weight up because he couldn’t latch on and had difficulty sucking from a bottle. We did local occupational therapy and had many trips back-and-forth to U of M Hospital. In the end, he pulled through everything like a champ but by October I hit bottom and fell into a delayed postpartum depression. I began taking antidepressants and slowly came back around, but my challenges would continue. Dylan had two more surgeries by the time he was five; one to remove the rest of the tumor and the second to close the gap left behind in the pharynx. He had many years of speech therapy, some occupational, then later vision therapy.

When Dylan was about two-and-a-half, we started trying for another baby. By this time I was considered “old” at 37 so I had to undergo genetic testing. Plus, we wanted to understand the odds of having another baby born with challenges. As soon as we had the “all clear” I had a spontaneous miscarriage. Then a second at 10 weeks along and I was heartbroken. We had heard the tiny heartbeat and we were so happy. I had a scheduled D&C and we never found out the sex of the fetus — it was too sad.

2007

2009

February 1, 2009 I landed back in the hospital. The prior months of 2008 I had been experiencing a lot of diarrhea and had lost about 20 pounds (which is a LOT for me because I’m petite to begin with). I was in so much pain in the gut that I couldn’t keep anything in. Everything hurt to eat or drink, even water, and I became super week. So, on my baby’s 2nd birthday, instead of seeing Elmo On Ice, I was having a colonscopy in the hospital. The biopsy confirmed that I had Lymphocytic Colitis — inflammation of the large intestine; my second chronic autoimmune disease. It was around this time I began to experience occasional severe night sweats. After blood tests and an MRI everything came back just fine — I wasn’t “sick”, I had begun peri-menopause at age 39!

By the end of 2009, I had had enough!!! Enough pain, enough sadness, enough challenges to last a life time. My boys were now 6 and almost 3, I was a full-time stay-at-home mom whose body was falling apart and whose mental health was hanging on by a thread. My lower back felt broken, my ankles were mush, I had sciatica running down my right leg, and my colon was a wreak. I was taking pain pills daily along with my other cocktail of prescriptions, adding alcohol into my coffee in the morning and crying all the time. I had support from my mom, who helped me tremendously with the boys and my husband did his best to support and comfort me and take care of the boys when he could in the evenings and on weekends. But, I was in agony and seriously thought about taking that entire bottle of pills more than once.

2010/2011

In March of 2010 a small ray of light peaked through the clouds when I had my first Total Ankle Replacement. After being turned down from the only local orthopedic surgeon performing total ankles at the time, for being, “too young” at 40 I did my research and found a doctor in Ohio who would prove to be my knight in shining armor. Dr. Berlet said my ankles were basically “mush” and that most people would be in a wheelchair by now. In December of that same year, after 2 years of failed back injections I had an S1-L3 Lower Lumber Fusion. In the summer of 2011 I went back to Ohio and had the right ankle replaced. I wrote a previous blog post about this time called Lost and Found.

Finally, I had a bit of a reprieve from the worst of my disease. For the next 5 years I focused on being a mom, a wife, and following my passions. I volunteered at my boys’ school, we took a few incredible trips, including the Dominican Republic, Paris and New York City. I took several art classes, learned oil painting, and created this website.

2016

In 2016 I decided to have my left elbow replaced. It had begun to bend and was starting to hurt. In the summer of 2017 I had surgery to remove part of the underside of my tongue due precancerous cells from Oral Lichen Planus; my third chronic autoimmune disease. In November, I had my right elbow replaced for the first time. After this surgery my painting quickly came to a halt but I found other creative outlets such as Family Genealogy and taking on-line classes to learn about Essential Oils. In the summer of 2018, I injured my right knee in Cancun and in the Fall I fell off a bike and broke my right clavicle and suffered a black eye.

One year later, in the Fall of 2019, I finally picked up a paintbrush again and took a class from a well-known local artist which I detailed in several previous posts. The class was incredible — I learned more in that one class and met the most incredible group of women — I was in heaven, but it wouldn’t last. I had put way too much stress on these new elbows by carrying over the weight limit (10 pounds each) and painting furiously. I suffered the consequences dearly and had loosened both components of my right elbow. Another surgery to kick off the New Year! Yippie!! That’s the one that was my D-Day — a foreshadowing of the year to come, not just for me but for the world at large. Cue the High Blood Pressure (fourth autoimmune disease), unrelating hot flashes, and first neck fusion in the summer.

2021–

So, by the beginning of 2021, I was more than ready to make that call to the therapist — the one my rheumatologist had recommended over a year ago. I knew I was drowning and needed a life-preserver. Even if she couldn’t solve my full-blown existential crisis, she could relate to me as a woman, as a wife, as a mother and as someone living with chronic disease.

We talked for many months over the course of the year. She was able to empathize with my situation probably more than a “typical” therapist ever could. It really helped to tell all my bullshit to somebody objective, who didn’t judge, and who wasn’t related! I felt a bit less alone and a bit less depressed. Although we didn’t create any miracles, I do feel that she helped me take one small step out of that deep dark hole. And for this I am grateful!

Thank You Celia 🙏🏻