My name is Lisa and I am living with rheumatoid arthritis (RA) and fibromyalgia. #myinvisiblefight is ongoing, but I have faith, family, and friends.  This is my story.

I was just 24 and had recently moved from Oregon to San Diego with the plan to finish my degree and pursue a career in an area that helped people. But when scorching pains shot up and down my wrists, and then moved to my feet, shoulders, hips, and more, I discovered I had an autoimmune disease, RA. Less than two years later I would add fibromyalgia to that list of illnesses that would continue to grow over the next two decades. I went into research mode–along with a little bit of rebellion. I was determined not to let this disease slow me down.

I resigned from my job, went back to college, and obtained my degree as quickly as possible, I anticipated not depending on my body to do busy-work type of jobs while I figured things out. Ironically, as sociology major, I used my education to learn to cope with my illness those first 18 months. Over the years, my calling became complete when, rather than working for a nonprofit organization, I began my own, Rest Ministries, in 1996. My passion to write, speak, and encourage others was given a place where my voice was heard and even welcomed.

When I established Invisible Illness Awareness Week in 2002, I knew the internet was a place where individuals all over the world could connect and encourage one another. Regardless of our diseases, we, as patients, had more in common than different. Much of how we coped with illness was determined by how we related to the people around us–strangers, friends, and loved ones.

I hope that people see me as someone who really does care. Theodore Roosevelt once said,

“Nobody cares how much you know, until they know how much you care.”

I have experienced this to be true. I do genuinely care about people–and I know the suffering involved in waking up with severe pain daily for over two decades. I can’t really compare my life before diagnosis to now. Then, I was young and carefree, and am grateful for those healthy years, but my life hadn’t really even begun. In November of 1993, I received the phone call about my RA test results. At the time, there was little information for patients. I went to a support group meeting by medical foundation and was shown a slideshow of horrifying images of deformed hands of patients with RA. I left numb, holding back tears, and frightened. After that I avoided meetings that involved slideshows.

I now have those hand; I type with 2 fingers and 2 thumbs. I can only use my index finger on my right hand, as all the other fingers have ruptured tendons. My left hand has 4 silicone joints, and the surgery was a disappointment to both my surgeon and therapists. I actually lost range of motion. But one can use these challenges as an excuse to no longer dream, or as a challenge to try to find a work-around. My hands adapt, and technology can help immensely–if one is patient enough to use it.

“Life has a way of never letting us slow down–even when we are ill.”

This past year I un-expectantly began homeschooling my son. Then, my husband was laid off his job of 20 years. I opened my Etsy shop. And then fatigue hit–major fatigue that I had never experienced. When my hands and feet turned translucent a week later I went to ER. They discovered I had a bleeding ulcer and had been bleeding over 8 days, losing half of my red blood cells. No wonder I could barely stand or walk!

My fatigue had been thought to be a side effect of a new medication. I was hospitalized and given 3 blood transfusions. For 6 weeks, I was either in bed or a chair, just trying to stay awake and vertical. I could barely speak or chew. It was draining to just try to fight to choose life. Now, I have finally recovered, I am still trying to maintain a new level of pain that I’ve not felt for a few years. The 3 ulcers that were discovered required that I permanently go off of a medication I had been on for twenty years. Another medication I am on has a shortage so I haven’t had it for 3 months.

#myarmy through this journey and #myinvisiblefight has been my faith, and although I know it is a personal matter that not everyone shares, I hope my compassion and kindness is a welcome addition to the chronically ill community. When I am asked how I spend my spare time I laugh. What spare time? I have so many projects going on because I best cope with my pain through distraction as much as possible. My home is inland San Diego, but it has a coastal feel and I love to decorate and create the space I crave–way before Pinterest was a thought. I love to read. I go to bed by 9PM each night and read historical fiction to escape for a while when I need to take a break from reality. Odds are, however, I may be back up at the computer or on the ipad by midnight due to pain or side effects from medications.

As anyone with an illness knows, it is all a juggle, and when one feels decent you over-do so if your body crashes again, you can still fulfill the commitments you have made.

I am honored to be a part of the #invisibleillness community. They are the strongest people I know. We chose the theme #invisiblefight to represent our lives this year, because–to live each day, to leave the house, to smile through the pain, to celebrate the joys of others–it is all something we choose to fight for. We don’t want to give in and allow our illness to dictate or define the life we will live.

Our illnesses have changed us–our bodies are much different. But we still have the power to determine how those changes influence our soul.