Since 2015, when I decided to take a different approach to healing, I’ve been slowly going off all of the prescriptions that I was on because as my body started to heal, I would feel worse taking some of the drugs. It was a challenge to figure out whether what I was feeling was a mast cell activation, or whether the Ranitidine, for example, was giving me a stomach ache. I never stopped a drug outright. I just began to very slowly decrease the dose. This began to occur in the wintertime when pollens were less prevalent. I found that I didn’t need as many antihistamines, and I would have to increase them again in the spring through the fall. This up and down cycle with mast cell activation makes it very difficult to know what the right amount of medication is for any given day.
Some days I would feel like I was back at the beginning of my journey when I was stung by the wasp – trying to figure out what was going on with me. I’d feel like I needed to be a detective to determine the cause of my stomach upset. It soon became the first question on my mind when I wasn’t feeling well: Have I taken enough medication today or too much? When I would feel the familiar gut upset, it would be easy to get depressed that I hadn’t advanced very far. Thankfully, my husband or some other close friend or family member would remind me how much better I was doing.
There was one medication that I was able to ADD to my regimen – that was a swallowed corticosteroid! As my gut healed, especially because of the TCM herbs, I was able to tolerate one puff of 100mg of Asmanex daily. I discovered that the 200mg dose of most swallowed corticosteroids was too high of a dose for me to tolerate. This certainly helped my EoE to calm down. It would have been so helpful to have had my local GI doctor, Dr. L to have been willing to try this when I first got sick. The biopsies that he completed didn’t accurately show the amount of eosinophils in my gut, and I believe that led me to suffer unnecessarily for years.
With any stomach ache, I was beginning to be able to feel the difference between a mast cell activation issue and an eosinophilic issue. The mast cell issue felt like nervous energy and anxiety. As I shared previously, when my husband was in his terrible car accident, I learned to be able to stop the progression of a mast cell activation by acknowledging what I was feeling and telling my body “everything is okay.” It hasn’t been quite as easy to determine the eosinophil activity, but that has also been revealed to me.
When I begin to cough/gag and feel a tightness around the lower esophageal sphincter, I know I’m having an EoE flare. The energy around the flare is different. It doesn’t feel like anxiety. It feels like anger. Like my esophagus and stomach are really angry. I continue to work on these emotions as they are revealed to me in meditation, and to give my body love and compassion in its healing.
I had one year between May 2018 and May 2019 that was really difficult with what seemed like many setbacks. In that year, with a few months in between each of these events, I fell and severely sprained an ankle; got stung by a bee; got sick with bronchitis for 6 weeks; and got in a car accident where a truck hit me totaling my car and injuring me.
Each of these items was a very stressful event for my mind and for my body. I began to learn how much stress plays a part in mast cell activation, but I also learned how much my mind had healed. I was able to notice when my mind became negative, and I would hear a thought of, “I’m never going to get better.” In fact, with the first setback of the ankle sprain, I learned that my body DOES remember how to heal itself!
With the daily experience of a chronic illness, such as MCAS or EoE, it’s very easy to think that your body doesn’t know or doesn’t remember how to heal. So each of these setbacks became another touchstone to remind myself that my body does know how to heal. And I also learned how to slow down and just sit with myself in discomfort and sickness or pain. Our society is not focused on that as a healing modality.
For me, being unable to take Tylenol, Advil or any other pain medication without severe stomach upset, allowed me to learn that I could manage the pain from each of these events by resting and listening to my body, instead of by taking a pill. It wasn’t fun or easy, but I learned how to go slowly and to thereby heal.
In January of 2020 the coronavirus became the watchword. By mid-March, we were encouraged to stay away from large groups of people and to have two weeks worth of food on hand. Washing hands was the best way to ensure protection from the virus, along with staying away from sick people. With working at home, I was able to more easily stay away from crowds, but I was still very concerned about COVID-19 and the effects it could have on someone like me with an MCAS diagnosis.
Dr. Tania Dempsey posted on Facebook in response to a question asking whether MCAS is an advantage or a detriment when a serious virus like COVID-19 comes around. Her response was, “The way I think about MCAS is that the way that the immune system is, we have multiple areas of the immune system, and you could have one area work really well and one area not work that well. So, in MCAS, it’s an overreaction of one part of the immune system, but it could also mean that there’s another part of the immune system that is not working as well. It doesn’t have to be the case, but there’s no way to predict it. I have some MCAS patients who also have autoimmunity. They have very active immune systems pretty much across the board, which means that they often don’t get sick. They are the patients that tell me they haven’t been sick in two years, three years, where they rarely get a cold, because their system is overreacting to the environment, but in a good way. So it’s kind of protecting them, it’s not good for other issues that they have, but it’s good because they don’t get sick very often. But on the other hand, I have MCAS patients who have immunodeficiencies, maybe from the MCAS or whatever caused the MCAS. And so their mast cells are more over reactive. When they get sick, they are more likely to have a severe reaction, but at the same time, their immune system is weak. So, they actually can’t fight the infection off appropriately and effectively. MCAS is a spectrum disorder and syndrome and so it really depends on the patient. There’s no way of knowing how one individual person is going to react. It’s about the individual person.”
I had been introduced to Wisdom Healing Qigong a few months before the COVID lockdown. Practicing this ancient healing art, which was developed in China thousands of years ago, every day for 2 hours was so helpful to release pent up energy and to help my body heal even more during the pandemic. Since I wasn’t able to see my Network Spinal Analysis doctor for a couple of months, I really needed to get in touch with my body’s energy and ensure that the energy didn’t get stuck again! Qigong worked beautifully for that, and to also help my meditation practice.
Each day is an opportunity for me to heal myself physically, mentally and emotionally. I’ve learned to appreciate everything that I’ve learned from my MCAS and EoE diagnoses. And I am especially grateful to be able to help others get a diagnosis and find a healing path for themselves.