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My Rheumatoid Arthritis Journey

by | Mar 27, 2024 | Journal

I was first officially diagnosed with Rheumatoid Arthritis when I was 24 while I was pregnant with my daughter, but I had been suffering symptoms for almost a decade prior. As a teenager, I remember having stiff necks, and aching ankles and wrists. I would explain the pain away, and speculate, “I must have stepped off the curb wrong and sprained my ankle, or I must have hurt my wrist or shoulder playing volleyball.” Thirty years ago, juvenile rheumatoid arthritis was so rare that the doctors didn’t test for it, and honestly, my mom never dreamed that I had an autoimmune disease so she didn’t take me for testing. It was just something that I dealt with. Some days were better than others, the worse days were usually overcast or cold, as is the case with many people with RA. At that time, I would rate my pain as a 2 out of 10, an annoyance, a slight hampering of my teenage life, but it didn’t stop me from running track, playing volleyball, swimming, or skiing. My 17-year-old body was strong enough to overcome.

The Beginning

Two years later, at age 19, I was in a terrible car accident. I wasn’t wearing my seatbelt and was propelled into the backseat after being catapulted into the windshield. I suffered a concussion and, a lacerated liver, and I also fractured 4 vertebrae, my arm, nose, and ankle. I had 38 staples on my abdomen from the repair and removal of part of my liver. My body was mangled, but luckily, the liver is the one organ that has the capability of regenerating. I spent weeks in the hospital being cared for by wonderful nurses, and it is interesting how life comes full circle because It was that fateful event that made me want to become a nurse.

I spent that next year wearing an uncomfortable back brace and healing my broken bones. That harsh shock to my body wreaked havoc on my immune system. EVERYTHING HURT! It took so long to recover and try to bring my immune system back in balance; and while all my friends were off at college, partying and studying, I was home recuperating. I was warned by my doctors, that I shouldn’t drink, as I had lost a third of my liver. It would regenerate itself in time, but I needed to be kind to it, which meant maintaining a healthy lifestyle. I was never a drinker anyway. Calorie for calorie, I prefer cheesecake.

Years went by, and I got married and moved to Germany for 3 years. I spent 8 years as an Army wife, and my daughter was born in Germany. I was a stay-at-home mom and I was so completely in love with this child. I wanted to be the best mom, but the strain of childbirth activated my immune system, and it raged. Somedays, it hurt even to pick up my beautiful little girl. There were times when I had a hard time getting off the couch. I would close my eyes, and ask God to help me because I couldn’t do it by myself. My daughter’s first year of life should have been the happiest of my life, but I shed so many tears. I was in agony and the flare lasted about a full year. It was a physical, mental, and emotional challenge. Chronic pain can wreak havoc on your mental health and outlook. I just wanted the pain to end, but I lived for my daughter. I would do anything for her happiness, and that included suffering through the pain to try to be the best mom for her.

In 1995, I was put on “The Big Guns”, as my doctor called the medications. They were Mychrisine and Solganol Gold Injections, Plaquenil, high doses of aspirin, steroids, and naproxen. At that time, gold injections were the gold standard, and were later replaced with methotrexate and biologics like Remicade and Orencia; and now the newer generation biologics, Humira, Enbrel, and Stelara to name a few.

To make an informed decision, my doctor educated me on the potential side effects. Because I was one of her youngest patients, she wanted me to understand how they may affect my future health. I was only 25 with my life ahead of me, and I would be facing decades of treatment to control my runaway immune system. Arthritis, which is usually a disease that affects the elderly, would wreak havoc on me for decades, with or without treatment. She explained these medications would be taxing on the liver, kidneys, lungs, and eyes, and years of these types of medications would shorten my life substantially. She said I would be choosing quality of life over quantity of life, and told me that 20 or 30 years down the road, I may need a liver transplant, especially with my history of liver damage. As a 25-year-old, 25 years down the road was a lifetime away. Lord, I would be 50, and an old lady by then. I agreed wholeheartedly to do the treatments, especially if it meant being free of the pain now and being able to be a better mom. I just wanted a normal life. I wanted to be able to put my little girl on a swing without wincing in pain, carry her, rock her to sleep without pain, and play with her on the floor without being stuck there, like an overturned turtle. Thirty years down the road meant that I could watch my daughter grow up, finish school, and perhaps get married. Yes, I agreed to the meds, but they didn’t really work. I would still have debilitating flares throughout the years.

These meds also tore up my stomach. The side effects of the gold injections were terrible cramps shortly after receiving them. Sometimes, I couldn’t make it all the way home from the doctor’s office before the cramps would hit. While my daughter slept peacefully in her car seat, I would have to pull the car over in a parking lot and writhe in the driver’s seat until it passed, which would take about an hour. Once the cramping stopped, I would take a nap with my daughter, and I would feel moderately better. Later, I would try the newer biologics, which would control the inflammation enough that I could be productive, and happy.

Unfortunately, the medication that helped the most, was also the most damaging in the long run, the steroids. Using steroids is like being in a relationship with the devil. You get what you want now, but it will always extract a toll, and sometimes the price to be paid later is steep. I recently had a DEXA scan to look at my bone density, and the doctor said that it was not good.

Those 25 years passed quickly. I had another child, a sweet but messy boy who is so much like me, in so many ways. His birth also took a toll on my health. I learned that RA is cyclical, there would be peaks and valleys. When I found myself in the valley during a flare, I would slow things in my life. I would sleep more, accept fewer invitations, and circle the wagons to focus only on the most important things. With that being said, sometimes, housekeeping was not an important thing. Homemade food, helping with homework, bedtime stories, and snuggles were my priorities during those days. Later, when my daughter entered college, I decided to finish college as well. I entered nursing school. At age 47, I finally achieved my dream and finished nursing school.

I’m 53 now, and some days, I do feel like an old lady because chronic inflammation has damaged my joints over the last 25 years. As I age, my body betrays me more and more, just as my doctor had predicted. Somedays, I feel like that hopeful 25-year-old, taking on the world, overcoming hurdles. Dealing with lifelong pain has made me resilient, persistent, and compassionate. I try to find the bright side and humor in every situation.

What I have learned throughout my life-long battle with RA is that controlling inflammation is a daily battle, but there is hope and light. Throughout the years, I have tried so many medications. I have found different things that have worked, at least temporarily. What I have found that has worked the best are dietary changes. I have also added supplements, essential oils, heat therapy, paraffin baths, stretching exercises, massage, and meditation; and I’m constantly exploring new options to help control inflammation.

If you are suffering from RA, I understand and relate because I have been there; we are sisters in the battle. Our community can be a support for you. Welcome to the tribe!

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