Monday, January 11, 2016

The Healing Process Reboot

I had the best of intentions.

Back in August 2014, I started what I planned to be a series about my healing process. That series ..uhh...didn't really materialize. It was a combination of things. I was still experimenting with new supplements like gelatin (quite successfully). I was overwhelmed by the task of trying to accurately assemble names of brands and foods that have proved helpful. I felt inadequate to express all the information that I'd learned about gut health. Combine that with a slew of big life changes, and here I am in 2016. Ready for a reboot. My desire is to share what I've learned about my own health in order to hopefully help others.

As a health history refresher, I've always had stomach and sinus issues as far back as I can remember. Removing lactose from my diet and avoiding environmental allergens in childhood seemed to help. In high school (1995), I got a severe case of mono that required steroids. After that, I was never quite the same, and in 1998, my family discovered black toxic mold in the air of our home. We had to leave everything behind, and my health was badly damaged in the process. I was unable to get enough sleep and often could not function to go to school because of the body aches and extreme fatigue.

Once I left that environment, I felt better and was able to go to college, but during the transitional housing and dorm living, I was routinely exposed to pesticides that caused severe and worsened symptoms. My mold exposure had led to multiple chemical sensitivity. With some careful planning through disability services at college and managing my living environment at home, I successfully completed my engineering degree.

In graduate school, I ate poorly, was under tremendous stress with little sleep, and got sick. I took antibiotics, cold medicine, and inhalers to try to keep myself going, but instead I collapsed one morning at church in 2005. I was never able to truly function after that. I was completely disabled and stuck in bed. After meeting with a cardiologist and doing a tilt-table test, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) which is a type of dysautonomia. I also suffered from chronic fatigue-like symptoms, severe irritable bowel syndrome, severe circadian rhythm disorder called "non-24," and ongoing multiple chemical sensitivities (along with asthma and allergies).

From 2005 - 2010, I attempted to manage my symptoms based on western medicine. I drank Gatorade, ate pretzels and salty foods. I wore compression stockings. I took Florinef and a beta blocker which worsened my constant dizziness. I had a horrible experience trying birth control to suppress my awful, painful periods. Nothing worked. I only felt miserable. I couldn't sit up for meals many times. Forcing myself to walk or exercise just left me exhausted and needing to recover for days. I was incredibly discouraged and felt my life slipping away. I was often awake at night and slept during the day. After hoping and training for a career in medical research, I was now stuck at home, watching TV, and when I had enough mental energy, trying to figure out what had gone wrong with my body and how to fix it.

My turning point came in 2010. I looked online to see who treated chronic fatigue syndrome, and I found an integrative health MD who did just that. My first meetings with her were not what I had anticipated. She kept wanting to focus on my intestines and suggested using a pretty potent anti-fungal medication. I didn't understand this because my symptoms were cardiac and neurological. I agreed to try the least risky of her treatment suggestions, an extreme change in diet. I temporarily cut out all sources of simple and complex carbohydrates (grains), processed food, and sugar. No desserts, juice, cereal, pasta, popcorn, bread, or any of those comfort foods I clung to like life preservers.

And an amazing thing happened. After a couple weeks, my dizziness stopped. Chronic, unrelenting, disabling, 24/7 dizziness was suddenly no longer dominating my life. I was in shock. The extreme diet change of lean meat and vegetables had opened my eyes, and although it was not sustainable due to weight loss and nutritional needs, I was on a new mission. I was going to figure out exactly what this connection was between diet and POTS.


I'm not sure exactly how I will do these new posts, but I have a lot more confidence looking back now. I've come much further in my healing. I have a good grasp on what works for me and what doesn't. I've narrowed down my remedies to simpler and easier fixes. I've experienced the gradual renewal of patiently practicing these remedies over years.


CiM said...

Oh, thank you! Thank you for writing this down.

From the mono and steroids to the pill - to all of the aftermath - I have so many experiences in common with what you describe. I have never been the same since severe mono in tenth grade - requiring steroids. I was put on the pill to treat horrible periods, and became so much sicker. I've ended up in all the same places you describe - on Florinef, with constant electrolyte imbalances, unable to escape dizziness, unable to get well, unable to sleep, unable to live.

Please - keep telling your story. The Lord used it to give me hope during the night. I understand that every body is different, that you aren't making promises about what will work for others, that you aren't giving medical advice.

Please, though, write your experience down. My body feels like a prison camp, and I am desperate to believe that after more than 25 years in this hell, there may be some way out. Seeing so many cross-overs in your story, I thought, "I need to look at the gut again." I have tried it - but it sounds like maybe not in the right ways, or not enough.

Thank you for sharing what you know and lighting my path today.

Qavah said...

I have so much compassion and empathy for what you have endured. It does feel like a prison to live/survive at the mercy of my body's agonizing and fluctuating symptoms. I hope that this series helps bring some relief. It's been a learning process - one I am still navigating daily.