I’d changed jobs, changed cities and was ready to take on the world and then my body rebelled against me. In February 2016, I was diagnosed with lupus. So many people would watch me go from 175lbs down to a mere 105lbs in a span of about 3 months. No one, including many doctors, had a clue what was happening to me. My heart had swollen, my voice completely changed, I had pain that would have me in the fetal position wishing for the love of my mother or death, both would have been welcomed.
A very honest Cardiologist, scared the shit out of me when he said he could tell something was wrong but found my situation “intriguing” because he had no clue why my heart kept swelling up or why any of the other things that were happening were taking place. I went to the beach, I lived in Florida at the time, and I reconciled my life and prepared to die. I called 2016, the year of the tombstone and I was prepared. I started to prepare my family and then I was told what I had.
Medications were sent overnight and I was sure I was going to beat it. This incurable thing. I was the best I could hope for was remission. I said, that’s what I am going to shoot for. At the time, I had no clue just how wise the doctor was, he said, it would be best if you just accepted the diagnosis. I am stubborn, I was going to beat it and take back my life.
In my mind, remission meant little to no pain, high energy, no more poisonous medications. I took drastic measures, I sold everything I owned after dealing in the US Healthcare system and deciding that even with a diagnosis, they were still going to kill me, and I moved sight unseen all the way to the other side of the world. I’d researched Bumrungrad in Bangkok, Thailand and that is where I planned to get my care. For two years, I lived in Chiang Mai where I learned to meditate, tried Chinese medicines and of course the pharma grade things to help keep my body from killing me outright.
After multiple hospital stays, one of my conditions was getting progressively worse so I decided, I needed to move closer to my family in case I bit the dust. No need in forcing my children to transport a body for 26 hours if I could get just a few hours away. I moved to Mexico.
After doing a dramatic food elimination and committing solely to being a plant-based eater, in December, I went to see my doctor and she informed me that based on bloodwork, I was in remission. However, I still felt like shit. What was that about?
Shortly after the start of the year, my lungs went haywire, my pain levels were once again off the charts, exhaustion was insane and I developed this incessant cough that was literally causing me to toss my cookies quite frequently. What the hell kind of remission was this?
Then, all of my optimism just faded away. I am a self proclaimed joy junkie, I tease and say I can find the silver lining in lead but I could find no silver lining here. Therapy was only helping a little and I had no real idea why I was so depressed.
In June, I called my daughter and with no notice, I flew to Atlanta to stay because I told her I needed a “brain break” which has now become our way of saying, this is an emergency and I need to come now. Walking, sitting up straight (no exaggeration) making food had become extremely difficult and I just kept thinking, is this my life now? So I decided I would die. Then I told myself, that was foolish and selfish, that I still had a lot to live for. To prove it, I said, let me write a list. The list was short, reasons to die outweighed reasons to live. Each day, struggling, sitting in my home alone, the urge to swallow all of my pills was getting heavier and heavier. I knew that if I went home, I would NEVER allow my daughter to be the person to find me, so I recognized I needed help and not only did I go home but I left every single pill behind. I didn’t even take the medication that keeps my body from attacking itself with me.
Emergency sessions with my therapist, chats with my close friends and family and after a bit, I felt, I could handle being alone again. Over the course of the 3.5 years I have been battling this disease, some family has stepped up, some friends have come out of nowhere and became like family. Also, many have been lost, I have no energy for people who are surface or toxic.
Some of this purging has been easy and some of it has been heartbreaking. This year, of all the time I have been fighting my body has been the most difficult for me mentally. I know its because meeting remission was like meeting my hero and finding out, she totally sucked and is nothing like I had imagined. NOW, moving closer to year 4 of my diagnosis, I am finally thinking, I need to accept that I have this thing and figure out what does that mean for me. As a former fitness competitor who can hardly get across a room now without needing to catch my breath, as a former award winning Real Estate professional who can’t spend too much time in the sun, as a former fashion blogger who some days have no energy to even shower, what does this next phase of life mean for me?
When people I love become toxic, when people I care for are not listening and offering me what I need, I have to make a choice. This year has been the hardest ever of my life. I am not just battling for my body but I am battling for my mind and because of that, it does not matter your status, friend or family, you must go. I am choosing me, I do not have the strength or the energy to battle both. Going forward, I have a business that I have decided to grow, I have a new hobby that I am loving and I have new goals that include my limitations. I am working on getting healthier, if not body then spiritually and emotionally. I have mourned some losses, some that I never thought I would have to but I am telling you that for me, I choose me. Call me selfish, I don’t care, I’m fighting to live and I cannot eat death with toxic people and shoot for life.