Welcome to my blog! Let me start with some background. When I was in my mid to late 40’s I noticed more fatigue and weakness than usual. I went to doctors, explaining the issues, and was told, “you just need to take a break, you’re doing too much”, “You need to get better sleep”, “You need to exercise regularly” and more. I slept too much as I was so tired. I ate an ok diet, no red meat, just fish and chicken, many times I would pick up something fast as I was busy so sometimes my diet was not ideal. I walked almost every morning a minimum of two miles, and I sailed regattas on a regular basis almost weekly. In 2015 the fatigue became extreme, I went for a physical, I was anemic with very low Ferritin levels and high ANA- Antinuclear Antibodies suggestive of Lupus which ran in my family. It was adenomyosis and was hemorrhaging with every monthly menstrual cycle, causing anemia and low ferritin. I had a partial hysterectomy and thought I was headed back to my old self. The fatigue was a little better, but not back to my baseline which was loads of energy with the ability to garden, work, exercise and play daily. I chalked it up to caring for my mom and working a very busy real estate career, with just lots to do.

In the fall of 2015, I began having a challenging time getting a satisfying breath, a suffocating feeling. I had my heart and lungs checked, but nothing. I thought it was allergies, took allergy shots but that didn’t help. I had a methacholine challenge to see if I had asthma and I passed the test, no asthma. I ended up in the hospital with breathing issues and none of the doctors could diagnose the problem. High doses of prednisone helped it, so off I went home without explanation.

Fast forward several years, August 2018 I was diagnosed with Breast Cancer, it was hormone positive Invasive Ductal Carcinoma that had spread to my Lymph nodes with extracapsular extension in one axilla node and vascularity in the main tumor, a high stage 2A. I had a lumpectomy, Chemo (A combo of Taxotere and Cyclophosphamide) plus heavy Radiation to my entire left upper side, front and back, and part of my neck. When I met with my oncologist, he told me it could come back anytime and anywhere. That’s what makes breast cancer so deadly as early on, the breast cancer tumor sends out breast cancer stem cells that lodge in organs, bone marrow, and the brain. The billion-dollar question is why they activate in some people and not in others. I asked if there was anything I could to do prevent it from coming back, and he said, “become a vegan/pescatarian.”. He felt it could help but there was not much research yet.

I stopped eating meat in December 2018 and while I’ve had a little here and there, rarely, like twice a year. Still, I had breathing issues and I was always getting sinus infections or bronchitis. I remembered as a child getting sick all the time and getting Gamma Globulin treatments. I did some research and thought I may have Hypogammaglobulinemia. My doctor was on vacation, but I saw his partner who thought I was off base with my hypothesis but agreed to run the tests I requested to humor me. Turns out, my hypothesis was correct. I began Hyqvia for CVID- Common variable Immunodeficiency, Hypogammaglobulinemia. The infections became less but I still had breathing issues.

After finishing treatment for breast cancer and several months after radiation was over, I began feeling great! I started a program at the YMCA via Livestrong to help cancer patients regain their strength. Livestrong at the YMCA | Livestrong. I started out walking the treadmill at a slower pace, but I couldn’t do high-impact exercise as it brought on the breathing issues. Next, I started using weights, but my arms stopped working for days after a session of upper body weight training with light weights. I thought it was odd. After a few days, they were better and I tried again, and the same thing, I couldn’t use my arms at all for a few days, but they would gradually get better. I stopped the program. Little by little I found myself getting weaker and my energy was leaving me. I had crushing fatigue at times, I couldn’t pull lines to sail, and I had no strength to pull myself up when tacking while at the helm or any position while sailing. I was having trouble getting up from a seated position, couldn’t button my shirt, and getting a shirt off over my head was impossible. My gait was off, I fell face forward a few times. I had swallowing issues at times and couldn’t get things down. I even had water come out of my nose when I tried to drink a few times. I also had issues speaking and would slur my words, or mumble at times. I stutter anyway so I pay attention to my speech. I was also dropping things, couldn’t unscrew jars, and couldn’t turn over in bed to sleep on one side or another. It was like I was becoming paralyzed.

My breathing was getting worse, and again I was hospitalized in 2019, and again high dose prednisone helped but a very high dose this time, 500mg daily. After that, my Immunologist saw some of my issues and told me to see a Neurologist, I told her I tried to make an appointment, but they needed a referral, and she said I would have one in 30 minutes! It took my neurologist exactly two appointments to tell me he thought I had Myasthenia Gravis. I thought I was fairly bright medically but had never heard of Myasthenia Gravis. A Single Fiber EMG was proof the issue was indeed Myasthenia Gravis. What I read was scary, but it explained everything I was going through. So began the meds and research to bring me to today.