Health Update #2

For the last 200 days, I have been homebound. I’m unable to work, to eat more than four foods (beef with salt, boiled white potatoes, red apples and red seedless grapes), to go to a restaurant or a friend’s house for dinner, to exercise, to travel, to wear my wedding ring or makeup, to wash my face with anything but water—basically to lead any resemblance of a normal life.

I am on 36 medications and supplements taken over 8 times a day and have medical appointments 3-5 times a week (sometimes twice in one day). My big adventures consist of picking up books from the library, buying Epsom salt in bulk from Target and going to the pharmacy.

Within a month of treatment, there were improvements. I was steadier on my feet and able to go for walks, my coloring and voice improved and some of my symptoms started to lessen. Within three months, I felt I turned a corner as I had more energy, felt stronger and could do more around the house.

When I first started with my doctor, my symptom score was 125/140, which is considered very high. After almost four months of treatment, my score is 52/140 and my immune system is turning back on. She was shocked as she doesn’t see this kind of improvement this quickly. She said while the medications and supplements are playing a part, she only sees this kind of healing when the patient is doing the deeper work (emotionally, mentally and spiritually).

I have had an enormous amount of lab work done—19 vials of blood taken at once, and specialized urine testing. I have the lowest level of zinc my doctor has ever seen in an adult. She believes I may have a genetic condition called Pyroluria, which causes the body to waste all its zinc and B6 into the urine. This condition causes depression, anxiety, mood swings, skin issues, poor cellular health and much more. This would explain my 35+ years of acne and my lifelong hormonal issues such as difficult menstrual cycles, endometriosis and a horrendous perimenopause/menopause. (A year ago, I had a hormone doctor tell me I was one of only three patients that had the worst menopause she had ever seen in her thirty-year career.) There is no cure for this condition, but is it easily treated by taking liquid zinc and a specific and active form of B6 for the rest of my life.

I have always had strong instincts and throughout this ordeal, no matter what research I came across, what friends and family suspected was wrong, or even what doctors thought, I had a knowing about certain things. And despite not having the medical knowledge or expertise, I never wavered on those internal nudges and continued to advocate for myself. My lab work confirmed some of those suspicions I’ve had for over a year: I’m not absorbing certain nutrients, my hormone levels were too low, and I wasn’t responding as well to hormone replacement therapy (HRT) as I should be.

Before I had heard of my medical team and their clinic (or had my diagnosis), I had a strong feeling that I needed to be with a functional and integrative team that used tests and tools that are not standard in our health care system, enabling them to find those “needles in haystacks.” Some of the traditional treatment for MCAS are weekly infusions, medications with serious side effects and avoiding everything that’s causing a reaction for the rest of your life. That is not the path I wanted (or saw) for myself.

While I am making huge strides, I am nowhere near out of the woods. I still have bad days and weeks. My immune system is coming back online, and we are hoping my body will accept more food, starting with a couple types of seeds and nuts, lentils and rice (rinsed, cooked and cooled) only once a week.

This illness is traumatic and terrifying, causing me to have some very dark days and question if my mental and emotional health will survive this. I have thought I cannot do this one more day, and that I am not strong enough to withstand all that I am being put through. I have felt that God was doing very little despite my begging, pleading and praying. And while He is not working as quickly as I would like, I know He is with me, that I have not been abandoned or forgotten, and that all the glory goes to Him.

A few weeks ago, my mom and I were watching the movie “Nyad,” about Diana Nyad’s swim from Cuba to Florida at the age of 64 years old. At one point in the movie, Jodi Foster’s character jumps into the ocean to motivate Annette Bening’s character to keep going. She said, “Just one more stoke. Just one more stroke.” On days when I think this is too much for me to bear, my mom now tells me, “Just one more stroke.”

Thank you to everyone who is praying for me, who checks in on me, who visits me and has been with me from the beginning. I could not do this without your support—especially without the support of my husband. But I know the real reason I can do “just one more stroke” today is because my almighty God has taken me by the right hand and has not let go.

“For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13