Lupus came to me at the peak of my life as I was finishing up my last year of Doctoral Study. Always an overachiever, I had my career planned out for the next 10 years.
Then, on a sunny spring Wednesday afternoon (March 11, 2000), my classmates gathered on the plush green lawn studying for our midterm.
I began to have an itch on my back, I kept itching and itching…..and because of the pollens, I was sneezing repeatedly.
Feeling unusually tired, I came home to take a nap prior to our next class. My nurse roommate’s “deer in the headlights” look told me something was not right. She advised me to rush to the student center as I broke out into hives.
This was the start of it all……I believe this was the trigger that had a domino effect for over 8 months prior to being diagnosed with Lupus.
Sick Care
I went from dermatology, infectious disease, internal medicine, cardiology, and finally to rheumatology where I was diagnosed with Lupus.
All they had to offer me were corticosteroids to put the fire out. My rheumatologist explained that while Lupus on the skin was not detrimental, it has the potential to ignite a fire within….killing and damaging my own cells.
He further explained that I needed immune suppressing drugs for the rest of my life to keep my body under control.
So began my health journey, which was hard, at times fighting the medical system, dodging their “conventional ways”, figuring out what my body needed, seeking care from holistic doctors, reading research, and realizing there are NO black and white answers.
I became my own experiment.
I experimented with Pilates, Yoga, Functional Medicine, Traditional Chinese Medicine, various diets, and Meditation.
2005- 1st Big Flare Moon Face From Prednisone, short hair because of hair loss.
2008 2nd Big Flare in the hospital after a kidney biopsy.
2013- 3rd big Flare with Kidney Nephritis on Prednisone Again
Fight for Health
I was severely depressed and SCARED.
Lupus physically deformed me. I lost my hair (alopecia), had rash across my face, and lost too much weight…..I looked sick.
I found out how vain I was. I didn’t care if I died tomorrow, I cared that I looked the way I did…..I prayed a silent prayer…”God, if you’re listening, please let me die with dignity, please give me back my hair.”
You see at the time, there was very little information on Lupus, I found ONE book at the bookstore and it didn’t answer any questions I had.
Can I get married? Have kids? How long will I live? What will be the quality of my life?
Can I work, should I work? What does my future look like? Who’ll want to marry damaged goods?
I was insecure….I felt broken…….FEAR set into my bones.
FEAR for the future, or lack of a future…
FEAR of the unknown….
I got married by default because I wanted to feel safe.
I had two kids against medical advice…..and PAID for it with two relapses that resulted in Nephritis.
My marriage and my kids were my experiment, as I didn’t know how it would play out.
In retrospect, I had courage…….I said damn it, I’ll LIVE until I DIE…..I choose to LIVE.
Gift
Because of Nephritis, I had to be on serious immune suppressing drugs….CHEMO among others, for a long time.
I recovered from all of the relapses without a scar on my kidneys. My nephrologist tells me that it’s uncommon for someone with my diagnosis to recover 100%, but I did.
I went AMA (against medical advice) after the second flare and decided to heal myself with diet, functional medicine, and exercise. I got myself completely off ALL meds.
I started a huge business and took on a lot more than I could chew, and kept on being busy.
My business is about supporting patients with chronic illness to help get rid of pain. I felt ALIVE again. I had purpose.
Lupus Lessons
Living with Lupus for over 19 years has taught me:
- Doctors don’t have all the answers. They want to treat YOUR symptoms without considering what may be CAUSING your symptoms– A pill for EVERY ill.
- Some days just are BAD days. Have a great attitude and know that you’ll have GOOD days too because you will.
- DOCTORS treat sickness…..YOUR HEALTH is up to you.
- There is no ONE thing….not every diet, exercise, herbals, supplements will work for you. You have to be willing to try a strategic MIX of it all and then give it TIME…..AND be PATIENT.
- Mindset is the most important in living with a chronic illness. ATTITUDE does change brain chemistry. A POSITIVE attitude switches on the GOOD genes while a NEGATIVE attitude switches on the BAD genes. It’s really that simple. So choose GOOD and smile.
- Most people don’t understand what it’s like to live with an illness, especially your loved ones. Cut them some slack, they want to help.
- It’s ALL about balance. Don’t buy into extreme DOGMA, walk the middle line it’ll help.
- Meditation and Prayer in Supplication allows you to be free from suffering.
- Don’t define yourself by your DISEASE. YOU are still YOU…….DONT’ FORGET THAT.
- If it doesn’t KILL you, it will make you STRONGER!
- Your intention does matter. If you are intent on getting well, you will. If you are convinced that you’ll always be sick, you will be. It really is your choice.
- YOUR mind is your best asset, don’t waste it.
- Dream BIG because it can come true.
- Lupus was a blessing in disguise. I was a caterpillar before Lupus and today, I FLY FREE and BEAUTIFUL like a butterfly.
- Love yourself like your life depends on it.
- Listen….to the birds. Observe the miracles all around you. Smell the roses. Taste honey. REVEL in your experience.
- Create the life you want, it really is possible.
- BE PRESENT.
I thank God every day for the gift of life, a chance to guide as many of you as possible to the truth of who you are.
A miraculous being, created in His image, it’s my hope to show you that YOU are perfect in your imperfections.
My mission in life is to guide you so that you can not only survive LUPUS but THRIVE!
Dr. Connie Jeon
DPT, MPH, IFMCP, RD, Board Certified Functional Medicine Practitioner
Shared with permission: Dr. Connie Jeon
Reprinted from Lupus Rebel
