“What defines you?”

What defines you? I’m not sure if I have a complete answer for that myself but I do know what doesn’t define me. After 24 years of learning to adjust to my new normal…..which has changed more than once over the years…..I’ve learned that having lupus is not who I am rather a part of me. In the beginning there was no way to forget my lupus due to various symptoms and feeling as if I was going crazy because doctors kept telling me “there is nothing wrong”, “the labs are negative”, “maybe you need to talk with someone”. It took over a year of back and forth, trying to explain that although I was a young, full time college student who was working and trying to have a social life that I knew something was not right. Luckily, I was able to visit a doctor that I had seen a few years before for a separate issue who took the time to not only talk with me but to listen….and believe. Thanks to this doctor I was diagnosed after 2 weeks of running every test under the sun with Systemic Lupus Erythematosus.  Finally an answer! Then began the journey of dealing with the ongoing symptoms, the pain, fatigue and even the pity party of “why me?” Those first 3 years took a toll and every organ in my body was being affected. I was determined that I would not let this stop me from finishing my undergraduate degree and while I was working my way towards chronic renal failure I was also walking my way down that aisle to receive my Bachelors degree.

It took time but I learned how to adjust to my new normal which included lots of doctor appointments, daily medications, stays in the hospital, and saying no when I needed to rest (which as a woman in her mid 20’s was not always easy and probably the hardest won change to make). Eventually, although medical science could not give a reason I went into spontaneous remission and my kidney function improved enough that over the next 20 years I worked, finished graduate school, traveled, spent quality time with friends and family and became a foster to adopt mom. It wasn’t that I didn’t have symptoms or that I was “cured” but that I learned how to live with lupus and how to adjust my lifestyle to what needed to be done. Again, that one sentence makes it sound like it was so easy for me to do but in all honesty I fought some of those adjustments tooth and nail. In my family I am also known for the bizarre illnesses and health issues that would happen to me. It’s just that overall I decided that I could either wail, stomp my feet and cry because I had lupus or I could decide that I was NOT my lupus….my lupus was something that I had and dealt with accordingly. I was blessed this past April to receive a new kidney from my brother because after 20 something years of wear and tear as the doctor put it my kidneys were not working properly. This was a major adjustment because after going into kidney failure this time I had to take medical leave from work, put fostering on hold, started dialysis and began to undergo testing for my transplant. So many thoughts went through my mind at that time and putting different aspects of my life on hold was very difficult. I was one of the lucky ones who received a new lease on life with my transplant and now I’m working on moving forward.

One thing that I’ve found over the years is that I sometimes “forget” I have lupus. I know that sounds crazy, right? How do you forget you have a chronic illness? Part of my explanation is that I know even with this amazing new kidney I still have lupus. I continue to take daily medications and I still have to monitor my health if I want to keep doing well. I’ve mentioned in previous blogs how I’m working as a licensed counselor, I’m opening up my own private practice and I’ve started school to complete certification as a Health coach. I have been keeping very busy and some days running myself ragged trying to fit everything in during my days. One of these days when I was so exhausted, ready to cry and wasn’t sure how I was going to do it all I realized….I had forgotten about my lupus! I had forgotten that part of the reason why I was so tired, and my emotions were all over the place besides being excited and anxious about my new endeavors was that my body was reminding me “hey you are not taking care of me”. I know…I know…anyone pushing themselves to the limit will be fatigued, can be overly emotional and need a wake up call. I think that is part of my reason for saying I forgot  I am like everyone else….and yet I’m not. I don’t define myself by having lupus but I’ve also learned over the years that I have to listen to my body’s cues. If I push myself too hard I might end up in bed for days, sick or worse in the hospital. So I laughed when I realized that I had forgotten my chronic illness because I’ve been feeling so great after my transplant and have been so motivated to begin living my life again. I have a young niece who has Type 1 Diabetes and her mom said to me the other day “yes, some days she forgets she has diabetes too.” I actually think that is okay as long as the forgetting is because we are living our lives, doing what we want and need to do and understand that for us our normal routine includes things like medications, testing, monitoring food, getting rest and learning when to say no. We know what our “normal” is and live our lives accordingly so that many days our chronic illness is not the defining moment of who we are as a person.

I also know that there are many people who may feel as if they can’t forget and that the daily reminders of their chronic illness won’t allow them that luxury. I would agree with that and would never diminish their experiences although I will share the thought that their illness still does not define them. Who we are at our core is so much more than our diagnoses. My hope is that I can continue to work with those living with autoimmune/chronic illnesses whether through counseling or coaching to empower them to find what defines them as a person with a diagnosis rather than as the diagnosis itself. As always, I look forward to any feedback, agreements, disagreements or to share your own stories.

“Every day is a new beginning”