I remember the exact moment of diagnosis like it happened yesterday. I remember the details explicitly; what I was wearing, who I was with, and where I was. My phone rang, caller ID said it was my doctor and my stomach flipped. I was waiting for results of a test that would determine whether or not I had Lupus. I raised the phone to my ear and she uttered results that somewhere inside I already knew where positive, I had Lupus. It was like everything you see in the movies. Everything around me slowed down, noises around me became faint, I took a deep breath, found a place to sit down and told her I’d call her back.
After the initial shock wore off, the first thing that popped into my head was my sister, she had been diagnosed with Lupus many years prior. I knew intimately what she had gone through all those years and felt like I’d already seen my future. I had already decided that my experience with Lupus would be exactly the same as her’s. This would not be the case at all.
The first year was probably one of the worst years of my life. Everything fell apart! I had to drop out of college, I spent a large portion of time in and out of hospitals and doctors offices, I watched my savings account deplete, it affected my relationships, and so much more. My physical health was dire. I weighed less than 100 lbs, my gums would bleed just by touching them with my tongue, my vision changed, I began to lose my hair, and I was tired ALL of the time. I couldn’t fight off any illness, plagued with colds and the flu, chronic infections in my lungs and heart, a failing digestive system that was no longer absorbing nutrients, and every single inch of body hurt 24 hours a day. As I’m sure you can imagine things got way worse before they got better.
I feel into a deep depression as things just progressively got worse. I couldn’t go out into the sun on hikes or spend time at the beach with friends, I didn’t have money to do anything outside of paying my burgeoning, colossal medical debt, I was becoming alienated from my friends, society and even myself. I didn’t know I was anymore. I was angry, bitter, sad, lost, helpless…you name it, I felt it.
The final straw was the day I was put on disability. I was having trouble finding my way home from a job I had been working at for some time, lost and disoriented. I had also just been diagnosed with Hypothyroid disease. Guess it was time to call it, I was officially useless in a world that had turned it’s back on me. How could this be my life? I had worked SO hard to get to where I was. Why was this happening? I felt terribly sorry for myself.
Not anymore… Now I know that Lupus was the best thing that’s ever happened to me. I know exactly what you’re thinking. You must be thinking I’m completely insane. Hear me out…
One day I was sitting around, on permanent disability, sick of feeling sick and sorry for myself. I started to do LOTS of research about Lupus. I wasn’t happy with the way my Western doctor was going about things. I had this drawer in my bathroom where I would put all the prescriptions I was filling but not taking. I sat down and began to count the prescriptions I had, it was something like 18 or 20 different prescriptions. One for sleep, one to stay awake during the day, one for pain, one for pancreatitis, one for Lupus, one for my Thyroid……. You get the point. I just couldn’t take them anymore. I didn’t like the way they made me feel. Also, what the hell was the point here, this was not a solution to the problem, it was just a mask. That was the day I woke up! That was the day I took things into my own hands.
I found a new doctor, I changed my lifestyle A LOT, I started getting more sleep, I started doing yoga, meditation, pranayama, I cut a lot of toxic things and people out of my life; basically I gave my life a makeover. I saw this article in LA Yoga Magazine outside of my YogaWorks studio on Larchmont about this woman named Tiffany Friedman called Amazing Grace. The article was about her journey with breast cancer. I remember reading it and feeling very comforted, like I wasn’t alone. I had read many stories that made me feel this way but I just don’t think it was the right timing for me. This article though, it hit me, hard. This woman was a fighter, no really, this is what she said on her Facebook status the day she was diagnosed with cancer:
“I am a fighter! I am a teacher and I love what I do. So I will share this news. Not with a heavy heart or with sadness. I share this with all my strength, my energy and my power to fight this.”
She ended her Facebook status by saying that she was still going to be teaching her 10:15AM class the very next day! This my friends is the definition of inspiring and it made me want to get off my ass and do something about it, it being Lupus.
My journey was nothing short of amazing. I was blessed with lots of support from family and friends. I found yoga, which literally transformed my life, which is where YogiNest came from and this blog that you’re reading.
Yoga taught me first and foremost to breathe. I learned to slow down, to take care of myself, to listen to the messages my body was sending me. I became very in touch with my body, I began to notice things before I flared and ended up in the hospital, this is something that become 100x’s more valuable than the 20 different prescriptions I had stowed away in that bottom drawer in the bathroom. I stopped pushing myself so hard, I stopped being so angry, so jaded. I saw things in people I couldn’t see through my anger, I saw love and support. I found forgiveness for those who couldn’t understand what I was going through, the ones that walked away when I needed them most and also realized that they opened space for others who genuinely cared about me. I found my calling, I created my own business. What I thought was the worst thing that happened to me became this gift wrapped in tragedy. All I needed to do was slowly unwrap this gift, baby step by baby step, to see what was really inside.
About a year ago I got the best news I’ve ever received, it was another phone call, I remember the details as explicitly as all those years prior; where I was, who I was with, what I was wearing, BUT this time the news was marvelous. Those three beautiful words: “YOU’RE IN REMISSION.”
I don’t know the exact recipe for my success, but I do know that I did it my way. I surrounded myself with the most amazing team of supportive people. I was taking care of myself for probably the first time in my life. I slowed down when I needed to slow down. I ate food that nurtured me, not just satisfied my taste buds. I did yoga every single day, I meditated every single day and I wrote down what I was grateful for every single day.
One of the most valuable lessons I learned from this experience and my yoga practice was how to listen to my body. I can think of countless times this particular tool saved my life. I know when I need rest, so I do just that. I know when I can’t go for a walk, a hike, or spend time in the sun, so I don’t. I don’t make excuses for my disease anymore, I just say I can’t do that today and respect myself and what I need. If it weren’t for that tragic day all those years ago I wouldn’t be sitting here writing this blog, I would be running a yoga business that caters to chronic and terminal illness, I wouldn’t be able to share my story with so many people who really need to hear it.
If you’re dealing with a chronic or terminal illness don’t give up! You are a fighter, you can come out the other side stronger and healthier. Read the article about Tiffany Friedman. Reach out to me if you’d like to talk. Find a good doctor that will listen to you and treat you as though your body is really your body, and that the medical decisions you make are truly yours to make. Surround yourself with a support team, it definitely takes a village. Most importantly love yourself, listen to your body, move your body, breathe, eat healthy food, smile, laugh though those tears and promise yourself you’ll fight each day until this day is behind you once and for all.