Health Update #8

I can’t believe next month will be two years I’ve had MCAS—but, praise God, I have lots of incredible news!

In late March, I started turning a corner. In May, I was able to see my nephew play little league (he’s pitches and is very talented) for the first time since I’ve been sick. When he saw me, he gave me the longest hug and said, “You came! You’re really here!” Cue the ugly cry. After his game, my family ordered pizza and I decided to try it—and I was fine! It was my first new food in almost two years. I waited a month to try another new meal, which I did with my family on Father’s Day. My mom made one of my favorites (paella), and I ate it along with sourdough bread, again without issue. My nephew asked, “Auntie, is this the first time you’ve had bread?” More crying.

I then started adding a new meal once a week. I’ve been craving child-like, calorie-dense foods that I didn’t normally eat before getting sick, which I’ve learned is normal after severe food restriction. I’ve had hot dogs, chili cheese dogs, tacos, enchiladas, sandwiches, shrimp, chicken, turkey, sausage, eggs, hummus, chocolate and more. Because I haven’t had new food in two years—and my body isn’t used to so many calories and variety at once—I don’t always feel great after eating. Sometimes I’m fine, and sometimes I’ll get headaches, feel tired and just blah (but it’s not too bad). I’m not getting any MCAS/Histamine/Oxalate reactions like trouble breathing and swallowing, choking, burning skin, diarrhea, vomiting, flushing, accelerated heart rate, kidney/bladder pain, insomnia, etc.

After only being able to put water on my skin, I’ve been able to have a simple skin care routine, which took a month to add in. I did a lot of research and am using a brand known for extremely sensitive skin, as well as a new to the market acne treatment that only has water and oxygen nanobubbles for ingredients. I’ve had acne for 35-plus years and have always had to use very strong products from the dermatologist just to get it somewhat under control, but my doctor said I shouldn’t go back to those ingredients. Because I haven’t been able to use anything this entire time, my acne continued flaring on and off, and the rest of my skin became so dry and painful with eczema. I now have less acne than I’ve had in years and my eczema is gone. To be able to do something as simple as washing my face went a long way to helping me feel more normal.

I had my big testing yesterday, and to everyone’s shock, I no longer need to be on medication. When I started treatment, I was on four antihistamines/mast cell stabilizers. After a year, I went down to three, then this last year have been on two. These had to be compounded to be free of dyes, gluten and other fillers, which makes them very expensive. I always get an intuition before my testing on what I will no longer need, and I did have a suspicion I would be coming off my medications but was still stunned. I will have to wean off them, and there might be times in the future I go on them short-term for added support, but this is considered a major win. I also came off my homeopathy for all allergens, which I had also been on since the beginning. This was another major surprise.

Also, I continue to show no stress to foods. Usually, when you start adding food back in, it will sometimes show as a stressor, which I expected to happen, but it didn’t. Another wonderful surprise. I’ve also lost 11 pounds. I knew I had lost more inflammation because I was less bloated and my shoes weren’t as tight, but I didn’t realize it was so much weight, including a decrease in body fat.

During testing, you always have supplements come off, but usually more are added then come off. This time, I came off 10 and only two were added, as well as some more homeopathy. I’m now on the least amount of supplements I’ve been on since starting treatment. I cannot say enough about homeopathic medicine—it is one of the major rockstars of my treatment. Truly miraculous.

Several things in my blood work continue to improve and/or are holding their improvement (like insulin, cortisol, inflammation). My pregnenolone, which is called the “mother hormone” as it’s a neurosteroid and precursor to estrogen, progesterone, testosterone, DHEA and cortisol, was very low. This happens with age and with menopause, but it also happens in illness and is something that is widely overlooked. When the body is in crisis, it burns through its pregnenolone and increases adrenal hormones. My doctor put me on pregnenolone, but I couldn’t tolerate it, even at the lowest dose. Little did I know, my body has increased pregnenolone on its own, putting me back in normal range, which decreased my adrenal hormones. This is a recovery pattern that my doctor has only seen three times.

My mental and emotional health is the best it’s been years (or maybe ever), which doesn’t seem possible as I’m still navigating this condition. But in the last few months, I’ve noticed that I’m hopeful and looking toward the future. I told my doctor, “I think I might be happy.” I still have times where I start to worry and old fears rear their ugly head, but it doesn’t last as long or take me out like it used to.

There are still some issues we’re trying to address. Since having vertigo eight months ago, I am still having vestibular issues to where it feels like I’m on a boat all the time. It has also made driving an issue, to where I can’t drive too long, and being on the freeway is especially difficult. I haven’t had a repeat of the vertigo since my visceral therapist treated me the same day, but when you have a complex, chronic condition, and you get a major vestibular event like vertigo, it can take months to years for the system to normalize.

My thyroid numbers still look like a car crash, with my TSH at a 16 and my T4 slightly lowered. But my T3 is holding and I’m not symptomatic at all, which still points to my pituitary overshooting. My doctor would love to put me on thyroid medication again (a different one this time), but I said I would rather drop dead of a heart attack than ever go through the four-month flare I had this winter from the last medication. So as long as I’m asymptomatic, she’s fine with me not being on medication right now.

My homocysteine is still elevated, which points to poor methylation and methylation is incredibly important. The fix is usually straightforward, using B12. My doctor put me on three types (two supplements and one medication), and I couldn’t tolerate any of them. We are going to use homeopathy to get my body used to B vitamins before trying again. So now the joke is, “I can tolerate pizza, but not B12.”

While I am well on my way to what I believe is a full recovery, I still struggle. Pacing myself is one of my biggest issues right now. As you’re able to do more, it’s easy to crash. And a big day for me looks nothing like a big day before I was sick. I’m very careful not to overdo it, but there is no handbook for how to start living life again. Learning my capacity is a day-by-day thing with a lot of ups and downs. Things like large crowds, lots of noise and high-sensory situations have to be integrated slowly. I’ve been able to start listening to music in small doses.

And sleep is still a huge issue, going on almost four years of severe insomnia. It will be better for a little bit, then take a dive to where I’m down to one to three hours a night (like these past few weeks). And when sleep goes, so does everything else. My doctor said it’s the last thing to stabilize, which seems so unfair, as it’s vital for healing. But my medical team has a brilliant acupuncturist, and her treatments have been so helpful for insomnia.

There are still so many unknowns. When will I be able to do more exercise than my daily, thirty-minute walk (I miss lifting weights)? When, where and how will I have a career again? How will we recover, financially, from this? When I start to go down those rabbit holes, I remind myself to keep trusting God, as He has brought me the healing I have today.

There is a lot of grief and trauma that comes from having an illness like this. You live in terror, imprisoned by your body and your home, wondering if you’ll ever have a normal life again. You miss time with loved ones that you can never get back. You have changes in friendships. You lose your identity. You have to rebuild your life. So recently, I started seeing a therapist, who is also a pastor. He lost his mother to cancer while he was in high school, and then almost died, himself, of cancer in his early thirties. That experience inspired him to counsel people navigating serious illness. I’ve never met anyone like him before—his take on God and illness is so unique and has been profoundly helpful to me. I leave every session just blown away.

All of this progress brings a lot of emotions with it. I broke down at my nephew’s little league game. I broke down eating dinner with my family. I broke down the first time I went grocery shopping, seeing all the food I hadn’t been able to eat in two years. It felt like I had been let out of prison. I broke down when my doctor told me I no longer needed my medications, and then again, when I told my husband and parents. As I always do, I profusely thanked my medical team, and as they always do, they reminded me that I’m the one who put in the work, and that most people give up long before this. They believe our bodies know how to heal, and that all they do is show it the way.

When I left my appointment yesterday, I cried to the point of wailing, giving praise to God. The news was so overwhelming and surreal, and I immediately thought of the many people I’ve connected with online who have MCAS, and every single one of them have been suffering for years. They either can’t get a diagnosis, or if they can, the treatment is so limited because traditional medicine has very little understanding of this illness.

I watched a video with a famous, double board-certified allergist/immunologist who said about MCAS, “We don’t know anything. We are building the boat as we’re riding it.” He also said they don’t know why this illness affects mostly women. I also came across a recent study on MCAS, that showed the average time to get a diagnosis was 30 years, with most being diagnosed at the age of 49 (same age I was).

Thank you, God, for the gift of intuition and the sense to follow it. Thank you, God, for leading me to my brilliant medical team, when it made no sense at the time, but I just had a true knowing. Thank you, God, for the new people you’ve brought into my life, who have felt like home. Thank you, God, for my incredible husband, who has never once complained, but instead greets me every day with a smile. Thank you, God, for giving me the strength to not give up when I thought I didn’t have anything left in me. And thank you, God, for rebuilding me from the inside out.

“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.” – 1 Peter 5:10