Mast Cell Mom

“If you think the pursuit of good health is expensive and time consuming,  you should try illness.”  – Lee Swanson The last few months have been tiring. There's hardly a day I'm not so exhausted that I don't *have* or need to take a nap. It was around February or March that my daughter came into my room in the middle of the night while I was sleeping and I didn't wake up. She sat there and noticed that I would stop breathing. Interestingly enough, it was two years ago that I suspected I had sleep apnea but my home study didn't detect it so the Doctor said no.  In late April I went to a sleep study lab and it was finally detected that I DO have sleep apnea. This past year I was noticing heavy, vivid dreams that I felt "stuck" or that I'm passing out or suffocating. Usually, I am kidnapped and held against my will while arguing and pleading to be set free. I've come to realize these are apnea and my dreams are a reflection of my body recognizing I am

Let's also add: "Because no words can explain what's going on in your mind, heart, and BODY." When I do actually {very rarely} "open up" and talk about what *really* goes on with me on a day-to-day basis with a non-friend, it is met with blank stares, awkward silence, uncomfortable comebacks, confused looks [but you wear makeup, put on real clothes, and do your hair?] Or, worse, when I'm asked, "Have you tried taking ________?[specific vitamins, acupuncture, massage, diffusing] Do you_____[juice, eat Keto, eat Vegan, eliminate dairy, etc]? For over 10 years I have been doing *all.the.things* with my nutrition, my eating {or avoidance of eating 😢}, and my makeup. So, this is why I (or, WE, in the chronically alive community) stay silent. And this one simply because last week I did fall apart...albeit to my husband, but somedays that same silence of what I'm trudging through is also why I fall apart. 💔Chronic, invisible illness is not only exhau

I've been sitting on this topic (let's be real, more like sleeping/napping/resting on this topic) for a few weeks now. Maybe "brewing" and "simmering" are better words to describe what's happening in my mind?  MISUNDERSTOOD. We've all been there. Think back to how you felt or how you feel when you are misunderstood. If you are like me, you may feel confused by it. Possibly flustered or agitated to not be understood? Maybe you become or became emotional, stressed, tense, anxious, or furious? There are many responses to such a feeling.  If we're all being honest with ourselves, misunderstood is a thought or a feeling we deal with on a fairly regular basis. If you are husband working for his family, you feel misunderstood both in the workplace and in the home. If you are the stay-at-home wife of (said) husband, you feel misunderstood by husband. If you are a child or a teen, you feel misunderstood by your parents. If you are a working mom and you ha

We all know that Hollywood, celebrities, magazine ads, movies, TV, commercials, etc are “deceptive.” It wasn't until I became a late teen/early 20’s and insecurity began to bring comparison into my mind. Thoughts such as, “She has the most beautiful skin.” Her body is so fit.” She looks so perfect in a bathing suit.” “Her hair is amazing.” would enter my mind when seeing a beautiful actress or model.   I truly was convinced, in my insecure confusion, that these women were born that way. They woke up with glowing skin, they laid around doing nothing to achieve that bathing suit body, or their hair really is all natural without use of dyes, hair extensions, or enhancement clip-ins.  Then I grew up and became more secure and began realizing so much of the “perfection” displayed on what we watch on TV or in the movies isn’t completely accurate, but it's a facade. Camera angles, personal seamstresses, hair and makeup crews, and so much more, are what goes into making a person look l

  Today I received a very significant letter in the mail. It is the first step in a disability loan forgiveness process. For over ten years I have been battling, struggling, and unable to perform duties "above and beyond" that of my every day life (and don't even get me started on whether or not I perform such *said* duties well enough or not. 😢).  In 2010, I received my Master's Degree in Special Education. It was a very special time in my life. I went on to teach for an entire school year and Briella was born; thus, my undiagnosed "disease" was also born but I would not find that out for years afterward. Her pregnancy was difficult and I thought I would improve once she was born, but I only degraded more. My safe food options became less and less, rashes became chronic, pain was debilitating, and I just assumed it was exhaustion from being a new Mom. Pursuing teaching after her birth seemed impossible with the way I was feeling.  It's now been ten yea

Definitely coming to terms that "feeling like crap" is my new normal, but this week I was "feeling like death warmed over"...if that's such a thing? Or am I being too dramatic? 😅 Recently, I had the opportunity to visit my Immunologist after over a year since my last visit (due to COVID I was forced into remote homeschooling last spring when I was due for my follow up. Now, I’m teaching regular homeschooling, and have had absolutely no energy to do the trip).  The Dr. prescribed me a few new medicines; one of which is oral cromolyn sodium, that's specificlly used to treat Mastocytosis. For the past year I've been on a strict regimen of claritin, xyzal, Monocluest, and hydroxyzine paired with probiotics, digestive enzymes, and as much self control of eating tempting foods, as I can tolerate.  My chief complaint to my Doctor was a symptom I've had for quite some time: internal tremors/vibrations/static. The "dial has been turned up", for lac