It was good...
But after the pregnancy...I lived with chronic yeast infections. I tried every medication available and nothing cleared the infections. I was told some people just 'live with it'. It was ok.
And I had an unexplainable exercise intolerance. I would get out of breath easily. I shrugged it off as being out of shape. I could still take the kids on a 3 mile hike so it was ok.
Then I began having bladder issues. I felt like I had a bladder infection most of the time. Testing was always negative, but the discomfort was real. I was told it was probably related to the yeast infections. But it came and went and it wasn't an infection, so it was ok.
Then I began having heart palpitations. And heart 'cramps'. My doctor did an EKG. It was normal, so it was ok.
Then I began feeling tired. All the time. I asked the doctor to check my iron because I had been anemic before, and my thyroid because my mother has hypothyroidism. It was all normal. I was told to slow down. I was a mother of twin toddlers and running my own business-that would make anyone tired. And so it was ok.
But it wasn't. I was still tired all the time. I still had yeast infections. I still had bladder discomfort most of the time. I still got palpitations and chest pain that took my breath away. And I was starting to have inflammation throughout my body. My premenstrual symptoms included weight gain of over 10 pounds, swelling of my hands, feet, legs, and my bra size increased by a full cup size. I couldn't wait to get my period so that things would begin to improve. I decided the birth control pills needed to go.
Stopping the birth control pills helped, a lot. I had more energy, I told people I felt better than I had in years, I felt like I was managing everything better.
Two months later My bladder symptoms were unbearable. I felt terrible. The doctor found blood in my urine sample. I was thrilled that I would now be getting some relief!
But that didn't happen. Instead within 24 hours of taking the UTI medication I found myself with tingling and numbness in my hands, feet, and face. After a week I had lost so much strength and muscle tone that I had difficulty walking, writing, and lifting even the lightest items.
In the end I regained some strength, but I was left with a constant sore throat, what I called an 'irritated' bladder that was never an infection, shortness of breath-even when just sitting, and an overwhelming fatigue. I had an exercise intolerance, standing intolerance, and persistent weakness throughout my body. I was doing well if I could manage the daily routine of the house. I was tested for everything from MS to Myasthania Gravis. Eventually I was told it was Chronic Fatigue or Fibromyalgia. This was a diagnosis of exclusion. If it is nothing else, then it must be chronic fatigue.
Over the next 10 years, I was able to get treatment for the chronic yeast infections I had had since the girls were born. I felt a little better. I met with a naturpathic doctor and did an elimination diet. I found I reacted to several foods, including wheat. I was tested for celiac disease and it was ruled out. I started a gluten free and anti-inflammatory diet and felt a little better. I was diagnosed with deconditioning as a result of the fatigue and shortness of breath limiting my activity. I got into a cardiac rehab program and worked up to 30 minutes of walking 3-5 days a week. I felt a little better. Life was manageable. I continued to work part-time. I had found a new normal, my normal.
But normal also included osteopenia-not normal at my age, continued fatigue and shortness of breath, and continued bladder irritation that I was now able to associate with certain foods. My vitamin D was low. I also began to experience vision problems and was told that my eyes were not focusing together. And I was having GI issues-reflux, nausea, bloating.
Then in 2011 my bloodwork said my iron was low, so I did my research and decided shrimp was a good natural source. So we threw some shrimp on the grill. I had always enjoyed shrimp in the past- not this time. I experienced nausea, bloating, and extreme GI issues. I went to see an allergist and was diagnosed with epipen worthy shellfish allergy. Yay me! Sensitivities I had been experiencing with egg, soy, wheat, and corn were determined not true allergies but recommendations were to continue to avoid them.
But after the pregnancy...I lived with chronic yeast infections. I tried every medication available and nothing cleared the infections. I was told some people just 'live with it'. It was ok.
And I had an unexplainable exercise intolerance. I would get out of breath easily. I shrugged it off as being out of shape. I could still take the kids on a 3 mile hike so it was ok.
Then I began having bladder issues. I felt like I had a bladder infection most of the time. Testing was always negative, but the discomfort was real. I was told it was probably related to the yeast infections. But it came and went and it wasn't an infection, so it was ok.
Then I began having heart palpitations. And heart 'cramps'. My doctor did an EKG. It was normal, so it was ok.
Then I began feeling tired. All the time. I asked the doctor to check my iron because I had been anemic before, and my thyroid because my mother has hypothyroidism. It was all normal. I was told to slow down. I was a mother of twin toddlers and running my own business-that would make anyone tired. And so it was ok.
But it wasn't. I was still tired all the time. I still had yeast infections. I still had bladder discomfort most of the time. I still got palpitations and chest pain that took my breath away. And I was starting to have inflammation throughout my body. My premenstrual symptoms included weight gain of over 10 pounds, swelling of my hands, feet, legs, and my bra size increased by a full cup size. I couldn't wait to get my period so that things would begin to improve. I decided the birth control pills needed to go.
Stopping the birth control pills helped, a lot. I had more energy, I told people I felt better than I had in years, I felt like I was managing everything better.
Two months later My bladder symptoms were unbearable. I felt terrible. The doctor found blood in my urine sample. I was thrilled that I would now be getting some relief!
But that didn't happen. Instead within 24 hours of taking the UTI medication I found myself with tingling and numbness in my hands, feet, and face. After a week I had lost so much strength and muscle tone that I had difficulty walking, writing, and lifting even the lightest items.
In the end I regained some strength, but I was left with a constant sore throat, what I called an 'irritated' bladder that was never an infection, shortness of breath-even when just sitting, and an overwhelming fatigue. I had an exercise intolerance, standing intolerance, and persistent weakness throughout my body. I was doing well if I could manage the daily routine of the house. I was tested for everything from MS to Myasthania Gravis. Eventually I was told it was Chronic Fatigue or Fibromyalgia. This was a diagnosis of exclusion. If it is nothing else, then it must be chronic fatigue.
Over the next 10 years, I was able to get treatment for the chronic yeast infections I had had since the girls were born. I felt a little better. I met with a naturpathic doctor and did an elimination diet. I found I reacted to several foods, including wheat. I was tested for celiac disease and it was ruled out. I started a gluten free and anti-inflammatory diet and felt a little better. I was diagnosed with deconditioning as a result of the fatigue and shortness of breath limiting my activity. I got into a cardiac rehab program and worked up to 30 minutes of walking 3-5 days a week. I felt a little better. Life was manageable. I continued to work part-time. I had found a new normal, my normal.
But normal also included osteopenia-not normal at my age, continued fatigue and shortness of breath, and continued bladder irritation that I was now able to associate with certain foods. My vitamin D was low. I also began to experience vision problems and was told that my eyes were not focusing together. And I was having GI issues-reflux, nausea, bloating.
Then in 2014 I learned about idiopathic anaphylaxis when I needed to use an epipen after eating a banana. And then again after eating nothing. And again for no known cause. I had chills and shaking, nausea, rashes, and GI issues. This was all in the course of a week, when my allergist was away on vacation. Seeing a new doctor, the new doctor on staff, was frustrating. But it ended up being life changing. He saw something no one else saw. He tested for a progesterone allergy and it was positive. He looked for a mast cell activation and saw something. I was given massive amounts of allergy medications and mast cell stabilizers. We went back and forth between different medications and dosages. Finally something was working. We suppressed the hormones and I felt better.
That progesterone allergy ultimately led to a complete hysterectomy, including oophorectomy. The hope was removing the hormones would eliminate my constant, cycling mast cell reactions and my system would quiet down. I have no regrets, the hormones were reeking havoc on my body and the constant state of reaction was debilitating, but my system did not spring back to normal.
That progesterone allergy ultimately led to a complete hysterectomy, including oophorectomy. The hope was removing the hormones would eliminate my constant, cycling mast cell reactions and my system would quiet down. I have no regrets, the hormones were reeking havoc on my body and the constant state of reaction was debilitating, but my system did not spring back to normal.
So here I am. Am I all better? no. I have a Mast Cell Activation Syndrome/Disorder. But I am finding my happy. I am still on this voyage to find things that make me feel a little bit better. I am constantly evolving and changing to make the most of me and my life. I still want to be stronger. I still want more strength and energy. I want to sit less and do more, but I need to listen to my body, listen to my mast cells, and carefully monitor my food, exercise, activity, and triggers to make the most out of life.
It has taken me 15 years to get to this point. 15 years from that reaction to the UTI medication before I had a diagnosis that led to an understanding of why I feel the way I do. Even more years to realize that many of the things I experience- like being cold when nobody else is-are symptoms of Mast Cell Activation. I am here to share my experience to help others find their 'happy',and to share what I now know about Mast Cell Activation and how it relates to eating, exercising, and living.
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