Six years ago today, I was released from the Hospital, swollen up to my eyelids (literally) with a whole lot of despair mixed with a little bit of hope. I never thought I would have the journey I had. I mean, does anyone ever say their life went exactly as planned? NO. But with every unfortunate circumstance, there is always a gift.
My gift came wrapped in the disguise of kidney failure. I was initially diagnosed with Minimal Change Disease. Leaving the hospital, all I had to do (which seemed like too much at the time) was to take a long course of high-dose steroids for 12-18 weeks and my life, body and appearance should return to normal. Doctors said if I’m going to get kidney disease, this is the best one to get and that I may need to take blood pressure medicine for the rest of my life and have my kidney function monitored every few months but the disease should go into remission.
At 33 years old, that seemed like a terrible diagnosis. If only.
That wasn’t exactly how the next few months (6 years) went.
Looking back through all the heartache and tribulations I experienced, those experiences are what lead me to where I am today. They lead me to my purpose. I feel I have been given a divine assignment and a story to share with the world. I didn’t document much of my swelling experience because I was too ashamed of my appearance. I wanted so badly to shove the entire disease into a hole so I could pretend it never existed. I wanted to hurry up and move on. I had bigger plans for my life. I needed to get married and have kids. 40 was quickly approaching!
Have you ever seen side-by-side portraits of people before and after a traumatic experience, like war? Notice how their faces have changed from the trauma? I don’t know what it’s like to be on the front lines, facing battle (with guns and blood and shit) but I will say that I was fighting the war of my life. I have seen a lot of my own blood though…and I no longer feel like I’m going to pass out when I get my blood drawn. Slowly, my appearance began to return (it felt like I had to first dig a ditch with a toothpick for it happen) but I am no longer swollen. I do feel that I look different (partly because of aging and partly because of my experience).
I used to wear high heels every day and all I wanted were my size 4 pants and 4-inch heels. I wanted my silky smooth hair back. I wanted to feel comfortable naked again. I wasn’t totally in love with my body before all this happened but I would take that over this situation any day. All the crap I worried about before seemed so trivial. You know when a mean parent says to a child: “oh, you’re crying? I’ll give you something to cry about!” I felt like God was basically saying to me: “oh, you’re depressed? I’ll give you something to be depressed about…you ungrateful soul!” That’s so cruel (and so untrue, by the way).
I was preoccupied with my vanity and materialistic needs (I still can be at times). I hated having swollen ankles and stretch marks and purple veins all down my legs from the swelling and poor circulation. I hated feeling tired and not knowing what to eat, feeling sick from all the medication I was taking and viewing every little thing as the possible cause of this disease. Could it be my mercury fillings I just had removed? Was it something in my apartment? Was it something I inhaled? Was it the Advil I took after drinking, just one day before I went into kidney failure?
Every day, I obsessed over the swelling that would not go away and when and how I could return to my previous lifestyle. Well, the swelling eventually went away but my previous lifestyle will never return (thanks to my 6 years of suffering, learning and healing).
You see, I believe my previous lifestyle hosted this illness to manifest itself in my body.
I ate cheeseburgers and french fries about 3 times per week. I took anti-depressants. I was sky-high in credit card debt. I had stomach aches after every meal, especially throughout the night (hard to get a good night’s rest when you’re in pain). My brain was filled with negative thoughts and anxiety. Did you know the average person has a negative thought almost every 3 seconds? I was almost always irritated with someone in my life. Worst of all, I was lonely and I felt like nobody understood me. I felt a gap the size of the Grand Canyon between the life I wanted and the life I had. I wanted to be married and have kids. I wanted luxury clothing and cars. I wanted to be rich and not have to worry about money or taking care of myself.
Recently, I learned that I don’t have Minimal Change Disease, I have FSGS (Focal Segmental Glomerular Sclerosis). FSGS means part of the kidney’s filters are scarred from all the protein leakage. It is almost identical to Minimal Change, the main difference being that scarring has already occurred on the filters (In Minimal Change, there is no scarring of the filters). As the scarring progresses, the kidneys eventually fail, resulting in the need for a transplant. What causes protein to leak through the kidneys is unknown (more on that later). Simply speaking, the kidney reads protein as a toxin and pushes it into the bladder with other toxins. When that happens, our bodies try to compensate by pushing fluid into our tissues (which results in edema/massive swelling). The kidneys are so intricately connected to our other organs that when they mistake protein for a toxin, the liver gets angry and cranks out cholesterol as a protective mechanism (Doctors then prescribe statins, to protect our arteries).
In Chinese Medicine, every organ is associated with an emotion. The kidneys are associated with worry. (Go figure. I guess all that anxiety I had wasn’t helping). The body is so amazing. It speaks to us every day. Every day we are bombarded with chemicals, pathogens, pollution, negative thoughts, and other pressures/stimulants that exhaust our protective mechanisms. We live in a fast-paced society and have adopted some unhealthy habits/lifestyles. But there is hope. I am dedicating myself to teaching and sharing with others what I’ve learned and how we can heal our bodies. I realized this has been my internal quest my entire life. Healing is our birthright.
As of now, after 6 years of hard work, failing then starting again, a lot of crying, feeling like giving up — I still fight.
I went from leaking 6-8 grams of protein per day to less than 1 gram. That is considered remission. It took many years and I’m still determined to get to ZERO grams. My kidney function is normal. I no longer have swollen ankles (yay)! I eat a mostly plant based diet with very little gluten or dairy (I make mistakes every once in while, I’m human).
I still live with FSGS and I may end up needing a transplant one day… but certainly not without a fight. I am armed with information to make the best choices and provide my body the tools it needs to heal itself. I enjoy fully participating in my health and well-being. So much that I’m making it my mission to share with the world.
UP NEXT: Some days, all the information in the world doesn’t stop me from making a choice that isn’t in line with healing. Why is that? Why is it so hard to change ourselves, even though we know what is best for us? Is willpower enough?
Yours for thriving,