Regardless of the type of diagnosis, your world is forever changed. It’s a massive learning curve, figuring out how to manage your chronic illness and cope with your new normal. For me, as the newness of it all subsided, I was able to refocus on areas that drove my previous life – family, friends, exercise, and work. However, I couldn’t seem to keep lupus from creeping up on my everyday activities.
The typical 3 o’clock slump turned into me falling asleep at my desk. A previous attack of blood clots had damaged my lungs, leaving me breathless after 5 minutes of running. Minor indigestion spiraled into coughing up blood and a trip to the ER. What had been nothing out of the ordinary before lupus had turned into challenges that were and still can be difficult to overcome.
After one particularly long day, I lay awake in bed thinking about all the things I struggled with or couldn’t do at all anymore. My dire thoughts swirled above my head as I stared at the ceiling with tears silently streaming down my cheeks.
Feeling incredible alone, I called my sister. She reminded me that I had 22 years of being Karin without lupus, and I have plenty of characteristics that never left.
Here are several personality traits lupus will never take from me:
My ability to…
1. Yell and cheer at the TV when my favorite baseball team, the Minnesota Twins, are playing
2. Sing loudly when Credence Clearwater Revival’s “Down on the Corner” plays on my iPod.
3. Melt when my three-year-old niece yells my name and runs into my arms when I visit.
4. Laugh uncontrollably every time my puppy lifts his paw to give me a high-five – his latest trick.
5. Not take life so seriously when my friends and I have dance parties.
6. Jump when I’m reading a good book and someone comes in the room and accidentally scares me.
7. Compete at everything I do whether it’s board games or intramural softball.
8. Smile when my boyfriend surprises me with my favorite flowers, lilies
9. Look forward to and get excited for every vacation and holiday.
10. Love with all my heart those who are a part of my life and there for me day in and day out.
My sister reminded me that I am still Karin – not Karin with lupus. I am the same sister, friend, aunt, co-worker, classmate, granddaughter, and person I was before, and THAT is what lupus will never ever take from me.
What characteristics do you have that your chronic illness can’t take from you?
As kids we dream of being astronauts, professional athletes, actors and race car drivers. I dreamed of playing hockey for the U.S.A. Olympic team. Growing up in Minnesota, my siblings and I were always ice skating on the pond in the backyard. The four of us had the perfect setup. My oldest brother was on a team with my younger sister who preferred cartwheels to skating, and my older sister and I were always a team. In the late ‘80s, we traded off being team USA. The matchups were intense, and I’d picture fans surrounding the pond and cheering wildly.
Backyard hockey turned into playing for the high school team, but after that my Olympic dreams faded. I focused on college and dreamed of being a writer. That dream turned into reality when I landed a position at a national magazine.
While traveling in Montreal for a story, my first symptoms captured and took over my body in minutes. Terrified of what was happening, I called my parents. Three months later I was diagnosed with lupus and all my dreams felt distant and unreachable. I couldn’t maintain a regular work week, much less strive to be anything more than healthy. Intensely competitive by nature, the defeated feeling that resulted was new to me. No matter how hard I tried, I couldn’t see how I could succeed at my career, having a family or even staying healthy when I was constantly fighting an unrelenting disease.
“Start out small,” my doctor prescribed. At that point, it was hard for me to even open pill bottles or walk due to merciless arthritis, so I started with only 5 minutes on a treadmill. It was hard not to get upset and discouraged being that just four months earlier I was running 13-plus miles. It was slow progress, but it was still progress. To help get through it, I recited the guestbook messages from my CaringBridge site over and over again, “You are an amazing and strong person!” And, “Our prayers are with you as always!!”
I couldn’t and still can’t stand the thought of giving up because then I’d lose, and I can’t lose. It’s not my nature. Three years later and two attempts to run a half marathon, I’ve yet again signed up for another one. I did it before I was diagnosed, and I’ll do it again.
Since the days of pond hockey, I can say I’ve always put every ounce of me into the game at hand, and in this case, my life at hand. Our dreams form and evolve around our life experiences, but it’s what we overcome to reach our dreams that define who we are and how we’re remembered.
Have you modified your dreams? What dreams are you still chasing despite your diagnosis?
“Some people dream of success while others wake up and work hard at it.”
The effects of chronic illnesses vary greatly from person to person. For lupus, symptoms can be as minimal as a small rash or as serious as permanent organ damage. If you’re like me and many other chronic illness patients, the symptoms can affect any number of body parts. The different forms the diseases take can make them difficult to diagnose.
During the first several months, I went through countless blood tests, CT scans, MRIs and EKGs. I jokingly told my family that I was going back to school to be pre-med with all my new medical knowledge. However, it was really difficult to keep all the information straight – what tests I had done where, how long I’d had certain symptoms, which medicines I was supposed to take when and how often.
During the first couple of years my parents came to all my appointments, and after every one we had a recap of my doctor’s instructions. It helped to talk through the latest news and next steps together. Sometimes the information is tough to hear, so it’s helpful to have someone else there to listen for the technical information. Other times, the appointments result in small victories, and it’s just as important to have someone there to celebrate the small wins.
Whether or not you can have a friend or family member at your appointments, another helpful tactic is to keep a health journal, either online or on paper. After I was diagnosed, a family friend who also fights lupus gave me one of the best pieces of advice I’ve received – keep a journal.
With so many medications and varying symptoms, my journal helps me see trends in how I’m feeling. It also greatly improved the communication between me and my rheumatologist. He was able to better manage my symptoms when I gave him the most accurate information I could. During one appointment, I had him write down the exact amount of Prednisone I was supposed to take on what days and times because my dosage varied based on the day and time.
There are health journals specifically for this purpose, but a regular pad and paper is perfectly sufficient.
Here are a few items to record:
Having this information on hand eased the stress of managing my illness. By writing the info down, I can reference it when I need to, and I don’t have to think about it otherwise. The less I have to think about having a chronic disease, the happier I am.
What helps you manage your health information?
I’ve gone from having a fully functioning, half-marathon running body to wondering what else is left to go wrong. When I first was diagnosed with Systemic lupus erythematosus, the disease and its inhibitors consumed my every thought. I figured I’d become more positive over time, but instead, I found myself growing more depressed as my symptoms persisted. Looking for anything to turn my gloomy thoughts around, my best friend offered to attend a support group with me. Unfortunately I left feeling discouraged and even more depressed after talking about all the bad things that accompany a chronic illness. It was too much for me. I had too long of a life left to spend my days focusing on the unfairness of it all.
How could I not let this get me down?
I started to leave post-it notes of encouraging words and inspirational quotes around my house. A sticky note on my alarm says, “You’ll feel better once you get moving.” In my gym bag a note reads, “Fight like a girl!” On my bed frame, “Sanctuary.”
As I did it longer, I became a little more creative. The coffee pot reads, “Caffeine is your new best friend, enjoy!” In permanent black marker, the bottom of my pill box says, “We make you feel better.” These notes put brief smiles on my face and refocus my thinking to positive thoughts.
It’s unrealistic to think it’s possible to be positive and happy all the time. There moments when the frustrations of being tired and sore get the better of me. One morning I read the note on my alarm and whipped it across the room. Despite the shooting pain up my arm, I smiled. It felt good to lose it for a moment. I realized I’ll have moments of complete and utter frustration, sadness, anger and helplessness all at the same time, but that’s all those moments will be – brief and temporary. They will never again consume my thoughts because I don’t let them. I refuse.
In the midst of pain, fatigue and drugs, it can be hard to scrape together optimistic thoughts, so ask your family and friends for help. They are full of positivity, warmth and love. Whether it’s post-it notes, tea breaks or something else, find your smiles throughout the day. It can make an obnoxious alarm clock a little less annoying.
How do you stay positive?
I was reading through a friend’s CaringBridge site who was fighting kidney cancer. After a few years of countless treatments and doctor appointments, he was done. He had beaten cancer. His years of hardship were summed up in a few simple, but powerful sentences. He was walking away from cancer…for good.
While I in no way shape or form was comparing my condition to what he went through, I couldn’t help but feel jealous that he was done. No symptoms. No swallowing dozens of pills. No planning around how good or bad he may feel. He was done. He walked away.
“Can I walk away?” Not yet, most likely not ever as there is no cure for Systemic lupus erythematosus (SLE) or many other autoimmune diseases.
It was never a death sentence, but at 23 years old, it was hard to come to terms with my lupus diagnoses.
In a 90-degree waiting room filled with people the average age of 70, my dad said, “We’ll get through it.” Tears had already surfaced. “Karin, you’re a fighter. We can take this on.”
That day my dad’s comforting words held me together, and his confidence stayed with me through years of ups and downs.
Encouragement and support are the strongest pills anyone with a chronic illness can take. CaringBridge offers that medicine every single day through its sites. I’m able to visit my site any time and read all the encouragement and support my family and friends have left me through guestbook messages.
There are times when I can’t help but wonder if there will ever be a day in my life when I get to say, “I’m done.” Will I ever get the chance to walk away? Who knows, but in the mean time, those messages give me strength to power through the daily frustrations of my lupus journey.