If anyone was to ask me what I thought about autoimmune disorders or any type of illness chronic or not I would say, “healthy happy thoughts.” I believed sickness can only thrive in your body if you allowed it to. You essentially "allow" it to own you. While I still believe this to extent and I still believe that your mind is amazing, that you truly have the ability to heal yourself and a healthy mind can mean a healthier body, I also understand that there is so much more to "healing" or being "healthy" then your mindset and thoughts. I would always say “I never get sick.” Then when I did get sick, I felt like a failure. I felt like I wasn’t being "positive" enough, I would panic and be afraid that I would end up like my mom. My mom has been “sick” all my life. Her mental health was always an issue, but her actual health of her whole body seemed to be one thing after another. At this point in life, she has had a mastectomy, hysterectomy, her gall bladder removed, part of her intestines removed, open heart surgery, and finally (drum roll please) her pancreas removed. I know how crazy that sounds but yes when I was 18 years old, they removed my mother’s pancreas and said she’d have five years to live. I am now 48 and she is alive living a very sad life. I will not be her…. I will not be her. A mantra that I have repeated all my life. I will not be a hypochondriac; I will not be her. I will be present in my children’s life; I will not be her. I will not selfish, I will not be like her. I won’t be crazy; I will not be like her. I will not be an addict; I will not be like her. This only created a toxic environment inside my soul. I lived everyday with fears so big inside that it is hard to see past them. I ignored any pains, aches, and overall bad unwell feelings in body until I forced to deal with them. Things like appendectomy, gall bladder removal (which I regret to this day), and overall horrible gut health. I believed if I ignored it, it would go away. Don't put any energy into it, only healthy happy thoughts. When I would finally head to the doctors because I just couldn't "make" it go away I would be filled with anxiety, and I would end up feeling like I was crazy. I could never explain the way I was feeling without the confused looks from doctors. I would leave feeling like I was just like my mother, and I was just being crazy. So, I'd move on, learn to live with it. Nothing is wrong, Stacey. Stop being a baby, Stacey. You are being dramatic, Stacey. I always talked myself out of being an advocate for myself. Not only as a healthcare advocate for myself but in every aspect of my life. Stay small and quiet. I was not a priority. Neither was my overall wellbeing. I lived my life in the shadows of others. Being others advocate and what they needed. The perfect way to ignore myself and my needs. My body was constantly trying to communicate with me, and I ignored it. Until I couldn’t ignore it anymore.

Present day and I am officially living with a "chronic" illness. Chronic illness has a tendency to ebb and flow. More likely to have "flares" and then good days. As of the present day I am no longer just surviving I am actually thriving with less "flares." But let's not get ahead of ourselves. It wasn't always that and that is what this is truly about. It is about the learning and quite frankly the suffering for so long and feeling hopeless and then one day deciding I could accept my diagnosis but not my prognosis. That I was going to fight for my life and do whatever I could to figure this out. Fighting for my life is exactly what I felt like I was doing for the past seven years then one day it shifted, and hope returned, and I saw light for the first time in a long time. Let me bring you back to the beginning one summer day a few years back.

Seven years ago, my life was completely turned upside, and I had lost hope most days. The summer before things went completely sideways, I also had what some might call a delayed allergic reaction to a yellowjacket sting. I was leaf blowing and got stung on my foot. It hurt and it was got very swollen, but I didn't think twice about it because I was never allergic to stings in the past. We were in the middle of moving and there was no time to slow down until I had no choice. I was feeling very ill waking up a day after getting stung. I would describe them at first as flu-like symptoms. I was feeling weak and began to feel like I couldn't breathe. It was such an odd feeling, and I began to think I must be reacting to the sting. I went to my sisters and told her because she is allergic to bees, and she immediately thought I was having a severe reaction. I DO NOT RECOMMEND THIS TO ANYONE, but she had an epi pen and we got in my other sister's truck and before we could get out of the driveway, she stabbed me with it. I was having an anaphylactic reaction, and that moment could have very well saved my life. It was awful and scary. I was confused on why I was all of sudden allergic to stings but here I was. So, after a round of steroids and a stern talking to by the ER staff about the epi pen thing I went on with my life. Those months after were a slow decent into some of the hardest years of my life.

Why am I having a hard time taking a deep breath? Why do I feel so itchy? Feels like bugs are crawling on my skin. Why am I so exhausted? Where did my energy go? Why can't I think straight? Where did my brain go? Why am I gaining so much weight? I don't understand I haven't changed anything. Why is my face so flushed? Why does my body hurt so much? My intestines and uterus JUST HURT. Why do I feel so anxious? I feel a rage feeling inside me and I don't understand it. I feel like I am going to explode!!! Is that a rash going up the side of my neck???? Why am I all of sudden not sleeping well, I always sleep well? Seriously, does anyone else see this. I am falling apart. I don’t feel like myself. This seemed to be my new reality. I was basically feeling awful a whole lot and had no idea why. Then.......... It was a hot July day and I lifted up a towel to my stomach and a yellowjacket was on it and it stung me, and I slowly descended into anaphylactic shock once again. With an epi pen on hand now that I was prescribed one, my sister administered it, and off to the hospital I went again. This was that moment, the moment everything went haywire including my mast cells. Welcome to Mast Cells Gone Wild. Where everything you eat, do, experience, breathe, touch, and put on body no longer is safe. Your body thinks it needs to protect you from life and you are officially allergic to what seemed like everything.

I am going to start with the typical answer you may get on the internet about what Mast Cell Activation Disorder is.

Mast Cell Activation Disorder (MCAD), also known as Mast Cell Activation Syndrome (MCAS), is a condition in which mast cells, a type of white blood cell involved in immune responses, release excessive or inappropriate amounts of chemical mediators, leading to a variety of symptoms. Mast cells play a key role in allergic reactions and are found in many tissues throughout the body, including the skin, lungs, digestive tract, and connective tissue.

Symptoms of MCAD

The symptoms of MCAD can vary widely among individuals and can affect multiple organ systems, including:

• Skin: Hives, flushing, itching, and swelling.

• Gastrointestinal: Abdominal pain, nausea, vomiting, diarrhea, and bloating.

• Respiratory: Wheezing, shortness of breath, and nasal congestion.

• Cardiovascular: Low blood pressure, dizziness, and fainting.

• Neurological: Headaches, brain fog, and fatigue.

• Musculoskeletal: Joint pain and muscle aches.

Causes and Triggers

The exact cause of MCAD is not fully understood, but it is believed to involve genetic and environmental factors. Triggers that can cause mast cells to release their mediators include:

• Allergens: Pollen, dust, mold, and certain foods.

• Medications: Certain drugs can trigger symptoms.

• Physical factors: Temperature changes, pressure, or friction on the skin.

• Stress: Emotional or physical stress.

• Infections: Bacterial, viral, or fungal infections.

Diagnosis

Diagnosing MCAD can be challenging due to the wide range of symptoms and their overlap with other conditions. Diagnosis typically involves:

• Clinical Evaluation: Detailed medical history and symptom review.

• Laboratory Tests: Blood and urine tests to measure levels of mast cell mediators like tryptase and histamine.

• Skin Biopsies: To check for abnormal mast cells in skin tissue.

Treatment

There is no cure for MCAD, but treatments aim to manage symptoms and reduce the frequency and severity of mast cell activation episodes. Treatment options include:

• Medications:

  • Antihistamines: To block histamine receptors.

  • Mast Cell Stabilizers: To prevent mast cells from releasing their mediators.

  • Leukotriene Modifiers: To block the effects of leukotrienes, another type of mediator.

  • Corticosteroids: To reduce inflammation.

• Lifestyle Modifications:

  • Avoiding known triggers.

  • Stress management techniques.

  • Dietary changes to avoid foods that can trigger symptoms.

• Supportive Therapies:

  • Nutritional support.

  • Physical therapy for musculoskeletal symptoms.

  • Counseling or psychotherapy for emotional and psychological support.

  This is just one example of the many things you may find on the internet. The problem with that is that it can be VERY confusing. You can get contradicting information and different interpretations. Even some specialists in this area will give contradicting information. And then add in the "root causes" band wagon and you will be completely confused. You will be asking yourself; do I have SIBO, parasites, mold toxicity, underlying viral infections like Epstein Barr........ it is literally endless. You might be told you need to detox. You will be most likely getting information about sensitivity to oxalates and salicylates at some point also. You may even feel a little better the more you remove from your diet, I did. I no longer ate anything high in histamine and at one point thought I must be sensitive to oxalates and salicylates. So, they were removed also. But listen I am here to tell you that the cause of what you are going through can be one of these yes.... that is true but you will drive yourself crazy trying figure it out and most likely do more damage than good trying to detox to quickly and attempting to take numerous things to help with your symptoms that may cause a reaction in your body because your mast cells are overreactive at this moment. So, my advice, SLOW DOWN!!! Stop and get off the internet for minute and take a breather. Ask yourself why your body thinks everything unsafe. Ask yourself is it possible to remind my body it is safe. How can I do that?

  I wish I knew now what I knew then because I would have done things very differently. So let me tell you what I did do at first. I panicked LOL STRAIGHT PANIC. It was flipping awful. I was so scared of everything because quite frankly everything made me feel awful. I was extremely dizzy, tired, itchy, short of breath, heart racing, brain fog to the point I could not find the proper words to express myself regularly, I was flushed and HOT, anxious and I was feeling like I was going to fall apart. That isn't even it all, I stopped eating most foods because my body reacted to every damn thing. At one point I was probably able to eat a handful of foods. Every normal everyday life thing I did caused my Mast Cells to solider up and "over" protect me. I was utterly lost on what to do. My older sister suffered with the same thing although it presents very differently for each person, so I had an idea on where to start. So I began with my diet, I said goodbye to all high histamine foods and started H1 and H2 antihistamines and Benadryl as needed. Come to find out my need for Benadryl was pretty intense and daily up to 4 a day on a really bad day. It was completely consuming. I no longer felt like myself or that my life was mine anymore. I lost so much more than food when this was triggered, I lost myself! I spend the next two years tirelessly researching everything I could about what was happening to me. I read all the books, look into all the possible causes, and constantly was changing things and trying to figure out what I was doing to make me symptomatic, I changed everything I did, and I was maintaining life, but it felt more like surviving and definitely not thriving!! I came across information on one of my researching nonstop days that caught my attention more than anything else thus far. Nervous system regulation, your vagus nerve, and trauma and how it can affect your body and health. This got my attention. And around the same time, I started therapy! I felt I was on the right path and hope started creeping in. I saw progress as I started to untangle the trauma and understanding how it affected my health and my connection to my body. Then 3 years after my mast cells went wild, my husband had a brain aneurysm and when I thought things couldn't get worst, I was so wrong.

  Continue looking out for more blogs about my journey, PTSD, trauma, your autonomic nervous system and tips to help you on your healing journey. And please visit my website www.slwwellness.com for my upcoming Ebooks, guides, and resources to help you along on your healing journey. E-mail if you are interested in working with me at [email protected].