Kelly and I are kind of related through marriage. Her brother is married to my husband’s niece and we have actually only met once though we’ve become fast friends through facebook. Kelly’s story actually gave me the idea of writing about people who inspire me. Needing background information, I asked Kelly to send me some history. Imagine my surprise, when this lovely young lady wrote her story for me. I made a few editorial changes but decided that Kelly’s tale must be told by Kelly herself.
I am Kelly and at 19, while working at a local hospital and going to college for a nursing degree, I fell. I needed surgery and something like potato roots was found growing in my knees. The surgeon sent a sample to pathology and the results came back “inflammation”. It didn’t sound serious to me at the time, so I just brushed that piece of information off and continued to rehab, thinking I’d ache a little, then get better.
I remember going to work and telling the nurses, “I don’t know what arthritis feels like, but I feel like I have it.” Of course, the nurses all said I was too young and not to worry about it. I continued therapy and I got worse and worse. I started blaming the surgeon thinking maybe he messed up and was too chicken to admit it.
The pain was enough for me to admit I couldn’t give my patients adequate care. I had to resign, break the lease at my apartment and move back in with my parents. Soon, I couldn’t move at all. My parents were picking me up and putting me to bed, my mom was giving me showers. We just couldn’t figure out what was going on. The pain was so severe I truly believed I was dying. I remember sitting my parents down and telling them that I was ready to die. The next day, my mom took me to the doctors’ office begging them to find out what on earth was killing me. After blood tests and other lab tests, it was confirmed I had RA (Rheumatoid Arthritis). We were dumbfounded….don’t only old people get RA? And what is it anyway? You mean to tell me ‘arthritis’ is killing me? After much research, I learned what RA was and that it was meaner than anything I could have ever imagined.
A basic regimen of medications was soon ruled out because my RA was too aggressive. We tried another combo of medications, again, a failed combination. Next, we started IV treatments. Rituxan is also used for patients with non-Hodgkin’s lymphoma. By taking this drug, I accepted the fact that I
would not have the ability to have children of my own. I remember being so angry that before my chance of having my own family arrived, it was gone. My life decisions were made for me.
My body resisted Rituxan, a chemo derivative, but after FORCING it into my body, it worked. Something finally worked. I was scared to death to go in for treatments because I knew I would have one serious reaction after another. Once, my whole body was a giant hive. Another time I had to stop treatment for a while because I couldn’t breathe. On and on the reactions would show up and for the sake of living I had to bite the bullet and just take it. On top of that, the treatment was expensive and while insurance paid most of it, I was still responsible for a hefty chunk.
While on Rituxan, a job opportunity came my way for a 911 public safety dispatcher at my local police department. I passed the tests and accepted the position. I was so scared of everyone knowing I was ‘sick’ that I only told my director and immediate supervisor. I started my job with the idea that I had to fight this battle by myself. It was mine, and mine alone and no one else’s burden…I had to go through a
couple of infusion scares before I realized that the people I worked with, other dispatchers, firemen, and police officers, all wanted to be my support. They wanted to be my strength.
After four years, Rituxan stopped working and I then stopped taking the drug. I realized this when I fell at work in December of 2010 and broke a bone in my shoulder that required surgery. All the suppressed fears of ‘going back to hell’ came swarming back to me. But being a stubborn cuss, I again bit the bullet and went under the knife. There was no getting better after surgery. I had another flare up. The difference this time was I knew exactly what was wrong with me. And I knew the ins and outs of the disease, which made me more terrified than before my diagnosis. I was forced to take a few weeks off work that turned into months.
In the middle of all this, I was abandoned by my rheumatologist. While on Rituxan, I was also signed into a clinical trial for RA patients for this drug through my doctor. I later learned that my doctor was paid for me being on this trial.
Learning that I removed myself from this study when I stopped taking Rituxan, he told me, “There is nothing more I can do for you. You will get worse. You ought to prepare yourself to be medically retired by the time you’re age 30.”
I was crushed. Crushed is not a strong enough word for it. I was destroyed. My spirit had died, I had no hope. I was again preparing to die. I forced myself to go back to work, even though I was in copious amounts of pain.
I kept acting like I was okay. Then, I was asked to train another new hire. We were taking a restroom break and I couldn’t hold onto my pants enough to pull them up on my own. I had to ask my trainee to come into the bathroom stall with me and pull my pants up. She did it willingly. With love and compassion, she made sure her trainer, was taken care of. The reality of what was going on broke me.
I had to admit to myself and everyone around me. I JUST CAN’T DO THIS. I took sick leave. I was laid up at home with no hope when one day, a coworker called and told me of a doctor her father goes to in Lubbock. She gave this doctor glowing reviews. I had absolutely nothing to lose, so I looked up his information and made an appointment.
The three hour drive was torture. We got there and I met COMPASSION! I was looking in the face of a true doctor. I told him my story of the past six years, and by the end of my story, his compassion had turned into rage. Not at me, but at my previous doctor. How could a physician allow a human being go through such unnecessary pain when there were so many more avenues possible. His rage turned into care when I asked him, “Will you keep me?” He said yes with love.
I left that office with hope. Hope bigger than anything I’ve ever felt before. We had to wait for the last round of Rituxan to wear off. And when I got home (I had since moved to my own place again)….I felt the fury of Hell racing through my body. I lost my ability to do ANYTHING. My mother came over to dress me, bathe me, pick me up from the bed and put me in the recliner before she had to go to work. I could not walk. I was a breathing slab of concrete. Every joint in my body had seized up and everywhere else was so swollen my skin began to rip open.
Three months later, I started a new treatment called Actemra with Dr. Compassion. It was a brand new drug. All of the trials had outlandishly awesome reviews. After the first dose, I swore I felt a difference. Yes, thank you, God, relief. But another setback was to come.
The next month I went in for a follow up appointment. I was optimistic, but I was equally concerned. I
began to get welts in odd places. One on my inner right thigh, another on my gut, and one in my mouth. The welt in my mouth was large and painful. It looked like someone took a baseball bat to my face by the time Dr. Compassion saw it. He said it wasn’t related to RA, because RA effects joints, not skin tissue.
I took his word and left the appointment feeling good. I met my brother and his wife for dinner with my parents at a restaurant in Lubbock. My food tasted really bad, but I was hungry so I didn’t say anything and the welt in my mouth was really bothering me. After we had finished and walked outside to say our goodbyes, the welt inside my mouth burst. The smell and taste of putrid gunk was everywhere. We raced to my brother’s house to clean me up.
The next day, I went to my family practice doctor and he said it was an infection of my saliva gland. The new drug had wiped my immune system out so completely that simple bacteria a healthy person would never even know was in them crippled me. Ok, so here come some antibiotics. I called Dr. Compassion and he said we couldn’t continue with treatment until the infection cleared up.
The welt in my thigh grew bigger and was a lot more painful. After a while I couldn’t walk (again). The welt began ‘weeping’. Seepage from the welt was stinky and creepy. It smelled like my mouth tasted. Mom took me to the ER, where I was seen quickly and given several antibiotics. The welt was a staph infection just like the one in my mouth. The infection had burrowed into my thigh, and was starting to eat into the muscle tissue.
I was sent to a wound care specialist. At this time, no antibiotic stops the spread of these staph infections but the specialist finally decided to try the oldest and least broad-covering antibiotic that never works for anything. Except for me it worked. The infection finally stopped spreading.
In November 2011, I was finally given the green light to get more treatments. The treatments took and no more infections. By December (exactly one full year after my fall & broken shoulder) I was back to work full-time.
God bless my director, Chief of Police, Chief of Fire, and City Human Resources who felt that I was worth waiting for after a year to still be a part of their team. I went back to work. January 2012 came and I was rejoicing that the worst year of my life was done. After all the nights of lying in bed begging God to remove me from this life and even seriously thinking of making that happen on my own power, I was on my way back to restoration.
I had often wondered why I was being allowed to go through such an awful thing. I got an answer in the form of a 911 call last month. A man was at his wit’s end. He was a war vet and had watched all of his buddies get blown away. When he came back to the States, he was diagnosed with PTSD and later in life, with RA. He was calling me, calling the police, to come clean up what was left of him after he shot himself.
I was going through the professional motions when he started to hang up the line. “Sir, wait, can I tell you something before you go?”
“Sure why not, go ahead.”
“What if I told you I know exactly, EXACTLY, what you’re going through?”
“I’d say that’s a load of horse sh**!”
“Sir, I do, I also have RA.”
I went through my experiences with him while he was holding the receiver of a pay phone at a convenience store. The caller was intently listening to my story of absolute darkness and hopelessness. I got to the part where God allowed me to survive in spite of last year. The man began to cry.
He was telling me thank you when my officers showed up. He was transported to a local hospital and given a mental health evaluation. I was a voice of hope to this man. Since that call, I’ve been a
light of hope to other people. It took the last year for me to realize that I don’t have to be angry with this disease.
Does it suck? Yes.
Do I hurt still? Absolutely.
Is my RA in remission? No way.
Will it be? I don’t have a clue.
All I know is my dispatchers, firemen, police officers, family, friends, and even strangers look at me and they see strength.
They see weakness.
They see a fighter.
They see a crier.
But most of all, they see ME!
I am loved whether I have a disease or not. Now I know I have a support system of people who love me. I can be open with my RA. I don’t pretend that I’m healthy anymore. I am broken and it’s okay.
Even more, I am a beacon of HOPE!
I am Kelly, 26 years old, broken and loved. My story is not over yet. I have the rest of my life to make a difference and change lives.