Healing from MCAS

I have come to understand that there are many paths to healing. I have used a multi-pronged approach to begin to heal. I utilize conventional Western medicine doctors, the medications that they prescribed that I tolerated, and the blood tests that I needed to mark my progress. My anecdotal research of individuals who were relying solely upon conventional medical doctors to treat their mast cell issues concluded that no one was being healed. Some patients experienced symptom relief for a time with certain drugs or modalities; however, their overall trajectory was downward. New issues would crop up, and more interventions were needed.

I wanted to experience healing, and I began hearing from families managing their child’s food allergies utilizing Chinese herbs. The stories about children with eczema, asthma and food allergies experiencing complete remission of their condition was compelling. I tucked that modality into my healing possibility list.

I also began seeing numerous different practitioners who practice energy work, such as Network Spinal Analysis and Wisdom Healing Qigong. This combined with meditation and other brain/mind/emotional transformation work yielded tangible healing results that people shared with me, and I added them to my healing list.

In full disclosure, none of these healing practitioners of alternative medicine that I saw were covered by my health insurance. There were numerous practitioners or self-described healers that I met through my journey that I decided to not pursue. In general, I wanted practitioners with some type of medical or advanced degree and years of experience with truly healing people. I would speak with other patients prior to signing up for any healing session or class, and used my intuition to help guide me to stay away from “snake oil” practitioners.

I told my conventional doctors about doing acupuncture and Chinese herbs so that they would understand what other products I was using. I got a few raised eyebrows through the years; however, no doctor forbade me from doing alternative medicines. This was likely because I would list the numerous prescription drugs that I had tried and that didn’t work, since I couldn’t tolerate the stomach pain and reactions caused from swallowing the pills.

Equally as important, I wasn’t willing to do what I felt was risky medicine, such as Xolair shots to reduce the IgE in my body. My allergist, Dr. B, and I had a long discussion about this drug, and because of my hypersensitive system, she didn’t think it would be a good idea. She had a few patients who had anaphylactic reactions to their first shot, which caused her to be very cautious. There is also a small chance of malignancies with Xolair. For me, messing around with my cells with an injection didn’t feel like the right path for me. I wanted to heal my body, to change the communication between cells with herbs and/or mind/body connection. I didn’t want to rely on conventional drugs that didn’t have long term studies, and for me that was 20-30 years of research, as to their safety.

Additionally, many of these newer drugs offered by conventional doctors also came with a hefty price tag, if I could even get my insurance company to cover the drug. My husband and I are self-employed and therefore not on a group health insurance plan. Our health exchange plan requires paying out $6800+ per year for my deductible in addition to the enormous cost of premiums. Adding the price of an expensive drug wasn’t feasible for our family.

I realized that my opportunity was to heal my body through more knowledge about the illnesses that I’d been diagnosed with, but not focusing so much on attaching myself to the disease itself or its symptoms. The words I began to use were “I have a diagnosis of…” rather than “I have…” That put more space between who I am and the condition. I wanted to focus on the underlying mindset that could have set up my body to have created the illness.

I began to research mast cell disorders online, and to read the research that was available, which really wasn’t much in 2014. I read through The Mast Cell Disease Society (TMS) website along with the Mastocytosis Society Canada site. These websites provided great information to prepare me for surgery or for an ER visit, and also, at that time, a listing of foods that could trigger issues for mast cell patients. I wanted more information about how to tell conventional doctors about MCAS because I’d found myself having to explain to my gynecologist and my primary care physician what MCAS was and what drugs I could and couldn’t have. I needed to arm myself with information without drowning in the disease itself.

While it was wonderful to find another person with an MCAS or EoE diagnosis, I found that reading patient stories online or in social media groups brought up a lot of fear for me. Many individuals shared detailed accounts of illness symptoms, pictures of rashes or lengthy stories of reactions. This frightened me, not only because what I saw many times looked horrific, but I had fears that what that person was experiencing could be me next. I determined that this wasn’t the right forum for me. I wanted to be communicating with people who wanted to get well, and focusing on the disease in this way wasn’t going to heal me.

I chose my close confidants carefully, and we had discussions about what medications we were on, what was working and what wasn’t. We began sharing articles we found online about research and shared videos from recent conferences. Mostly though we focused on gratitude for our families and our ability to participate with our children and our spouses in our lives despite not feeling great every day.

Lastly, I felt it was important to cease pushing myself every day, and to begin to show some compassion and kindness toward my body. I was fortunate to work at home and could set my own work hours. If I had a difficult night’s sleep, I was able to start work later to allow my body to rest more and/or to take a nap in the afternoon.

I placed my healing as the top priority of each day. The timing of this was fortuitous since my kids were older, and my son had just left for college while our daughter was already out in the work world after college. The empty nest allowed me to baby myself and learn how to listen to the messages that my body was sending me on a daily basis.

To read about my healing through Network Spinal Analysis, click here.