2016 Year of the Patient
As a college student at the University of Iowa, I felt I had the world at my doorstep. I was very involved in academic and extra-curricular activities and held leadership positions in my sorority. So I merely thought my onset of exhaustion at the beginning of my junior year was a result of over-committing myself in too many areas of my life. Soon exhaustion turned into much more…not being able to raise my arms above my head, wash my hair or be able to bend my knees to sit on the floor. I went from exercising 3 days a week and walking miles on campus each day to not being able to take a deep breath or climb a short flight of stairs without being in excruciating pain. My eyes would swell shut for apparently no reason and my fingers would swell to double their size. This set in all within a period of weeks.
I spent months traveling home for long weekends for many doctor appointments. It wasn’t until my chest pain and trouble breathing was diagnosed as pleurisy (inflammation in the lining of the lung(s)) by a pulmonologist that I first heard the term Lupus. As many others may relate to, it was the acknowledgement by a physician to me and my support system that I wasn’t crazy, which provided a short lived sense of relief. That was the beginning of a journey that started 17 years ago…
It was the feeling of defeat against this mysterious disease that was most disheartening at first. I had to take a semester off of school…these were my sickest days to date. I depended on my family for every need. I would have episodes where I passed out unexpectedly…I had rashes on my body and arthritis that would greatly impact my mobility, all at the age of 20. I lost 1/3 of my hair on three different occasions, a symptom I wouldn’t wish on my worst enemy. Over the next several years I began to take control of my disease through self awareness, medication regimens and creating healthy habits.
I would continue to battle staph infections all over my body and developed unexplained rashes. I could not fight infections and my fingers would swell to the size of sausages. My lymph nodes in my abdomen swelled so badly they rushed me into emergency surgery for an appendectomy…only to find out it was my lupus masking itself once again…my appendix was fine.
My disease has manifested itself in many different ways over the years, which is perhaps why as warriors against lupus, we are always thinking about how it might reinvent itself and attack our bodies in a new, different and malicious way. We are on the defensive.
Some of my toughest times have been when new symptoms appear. Trying to figure out any new sense of what normal is for lupus compared to something I should be concerned about is a science and an art. Three years ago, I had new digestive issues, and rather than allowing it to be written off to lupus, I was my own advocate and made sure I had the appropriate care and tests…of which finally determined I had developed Crohns as well. I was told it was like getting struck with lightening twice and that it was very uncommon for these two diseases to appear in one person. I had to educate myself once again on a new disease that just happened to share many of the same treatment options.
Lupus struck again 18 months ago and the antibodies that I knew were floating around in my bloodstream since my diagnosis finally reared their ugliness and I have now had two blood clots in my legs. I will now be on blood thinners for the rest of my life. It is these ‘bumps in the road’ though that make me appreciate the many blessings I do have and determined to find the joy that does exist in EACH and EVERY day!
I have an amazing family and support system that keeps me grounded and supports me in so many ways. I have been able to surround myself with a team of physicians and nurses that truly care about me and allow me to advocate for myself at all times!
Whether I am in a flare or not, I know I am in control of one thing…my ATTITUDE!
Once I made this realization in life, I try to get up each day and purposefully make my choice….and I CHOOSE to find JOY!
A good day is a day that I get to talk to see my family, contribute to my team at work and have laughs over family dinner and of course get to cuddle my daughter before she drifts off to sleep.
A good day is a day that I find acceptance for the path God has chosen for me and embrace it. I truly believe there is a reason my path in life has had the detours of Lupus and Crohns…there is purpose in my diagnosis
I have been so blessed to have found opportunities to serve others with lupus and to continue to promote our cause and develop awareness of this mysterious disease.
I began volunteering with LFA five years ago and four years ago, joined the Board of Directors. It truly has been an honor to serve our Iowa Lupus community through advocacy both here in Iowa and as well with our federal government.
I find hope in my faith and in knowing that I was put on this path for a reason. While I know I cannot control each aspect of my disease, there are many variables that ARE within my control. First and foremost is my attitude towards myself. I find hope that I will continue to persevere each day, no matter what the day brings! I continue to work to forgive myself for the days I don’t feel as good as I would like…
I work to give myself grace for the days I don’t get items checked off my to-do list or when my house isn’t as clean as I would have hoped. When I allow myself to acknowledge my physical and emotional feelings and health and accept all of me for who I am, I find peace in my purpose, I find passion to make each day better than the last!