Covering up my "Mask" so I Can Arrive

While I'm not someone who dresses in costume and celebrates Halloween, most people who dress up in a costume mask are doing so to cover up their face, right? They want to disguise, be someone different, and masquerade as as pseudo personality. Usually the purpose of a mask is to hide ones face underneath of it. But, in my personal life, I'm trying to cover up a mask I didn't choose to wear and that I don't want to wear. 

I'm a mom. It's my duty (and privilege) to "arrive" to life on a daily basis. I am the person who takes kids to school, attends kid-related functions (gymnastics, play groups, school functions, etc), and then there's my own personal enjoyment activities such as Mom's groups, teaching Sunday School church, or public events with family or friends to attend. Sometimes I have to arrive to such things, but just because I'm not feeling well most days doesn't mean that I don't wish to enjoy such events either. It's a balancing and juggling act because my heart and mind say yes, but my body is trying to convince them otherwise, and then, my self-esteem wants to hide altogether.  

Such days as these, as much as I don't like to have to do it, the need for medicine is real and it's a necessity. This whole past week was day-after-day of my flaming hot, burning red rash on my cheeks accompanied with non-stop POTS side effects and non stop uterine cramps. 

You may read this and think, "She's whining and writing an entire blog post because she's got some redness and burning on her face? It can't be that bad." I wish that were true. Oh, how I wish. Trust me, I know it sounds weird. The truth is, I don't wish this on anyone; however, my only wish is someone could feel what this feels like for just a minute. I often tell my husband that I lack the adjectives to describe all of this. Likewise, the red rash is just one component to the whole picture but no one sees (or feels!) my insides, they just see my face. 

Imagine feeling a pulsating, boiling hot burn from the inside out of your skin. Seriously, now think: when has your face ever felt like it was pulsating? Or how about burning in heat? Oh, sure, from the sun, but how about it isn't sun related? My eyes throb in pain from the internal reaction that is radiating outwardly from my mast cells (that are visually erupting in bright redness.) The kids being loud or overly energetic causes almost immediate splitting headaches. I took a variety of pictures this week beginning on Sunday, all the way until Thursday. It was a constant regimen of Claritin, compounded Ibuprofen/Acetaminophen combo, Xyzal, and Singulair with some Quercetin into the mix with hardly any relief, except for sleepiness. The burning just wouldn't stop. I fell asleep to it and I awoke to it. My face felt incredibly painful all week; which made it difficult to function and focus because, well, it's hard to focus when your face feels like it's on fire (amongst the other bodily side effects from a flare)! 

This red burning rash is my mask. I see these pictures with my red face or I look in the mirror as these reactions are happening and I honestly don't recognize myself. I went 30 some odd years without it and now I have to come to terms as this being my new normal. It takes so much makeup to cover up the bright redness to dull it to a dark pink. I joked with my husband: "I had to Bob Ross my face today." Once again, thankful for humor and the ability to find safe makeup that helps to cover up these flares.

The next question is, what caused my face to do this all week long? The honest truth is I have some ideas, but likewise, I have no concrete confirmation either! And, what I "suspect" to be a trigger, do I want to risk it again to "confirm" it was that food item?  I know, it doesn't make sense so what I have to go on is what's the "most different" this week? I've been racking my brain trying to think if it was food related, topical related, or a combination of both. What I came up with was that I was eating a new brand of gluten free bread this week (Canyon) and I also allowed myself a heaping handful of Rice Chex brand cereal on Saturday night. Those two new things put together were probably the monsoon that put my mast cells into chaos. This is typical of a soy reaction for me and, while the Chex box did not indicate obvious soy in its ingredients, I'm sure it was full of GMO junk and its taken my body almost a week to detox from it. I did also use pure Shea Butter on my face a few nights ago and I noticed the burning was exceptionally exasperated after putting it on, while interestingly, I was only doing it in hopes to calm the burning and redness. 

Likewise, my husband left first thing Monday morning for a business trip, there's concerning medical issues going on with my Grandpa and brother, and the combination of emotional stress expounds any (and all) of my flare ups. So that other layer isn't helping matters either. 

All week long, I knew I had The Price is Right event to attend and I kept wondering how I was going to muster up the energy, self-confidence, and desire to attend when all I have wanted to do this week is hide and use as little energy as possible so I could get by without eating much to help calm my body down from this reaction. The truth is, I woke up yesterday with lessened redness but still had the burning and the face pain. Was I going to let it stop me? I had a choice and the choice was no. So, I did what I had done every other day this week and I took my medicines and I "Bob Ross'd my face" and told myself I was going to have fun. And despite a few moments of pains,  I had a wonderful time with my Mom and I will never regret that I went. But it doesn't mean that it isn't easy to muster up the energy, strength, and confidence to do such things. It just means that I am grateful that my will is still strong and I honestly pray, that no matter happens with me, my body can keep up. Scarily, I can feel my body's and my memory/mind ability to keep up fading some days and it does cause worrisome thoughts. 

These "she looks just fine" pictures below of me at the Price is Right event are my Covering My Mask. Would anyone who looks at these pictures know that both my mom and I feel in pain or that I have an exceptionally red, burning, itchy face with pulsating eye pain under my make up? Or that I am constantly feeling like I am going to pass out or that I can hardly eat "normal" food? Or that I had to take a lot of compounded pain meds and antihistamines just to attend this event? Nope. So many people who have chronic illness have a mask. They arrive. They show up looking happy, variably normal, and usually; even with a decent disposition, may I add. 😉👊

That's because we have learned how to flip the switch. We crash at home because we've depleted all our best for public events, friends, or functions. We don't know what it's like to feel anything near to "normal" anymore, oftentimes feel awful, but we only get one life and we truly don't wish to live it feeling sickly so we do our best to arrive. We rarely regret that we arrived, but it takes quite a bit of preparation: mental and physical to do it. And, afterward, our bodies just need a little more time than a normal person to recover from all the energies used to do such an outing; which usually means, taking the day off the following day to "recover."

And that's my everyday with kids. I arrive, whether I'm literally dragging my feet behind me or not. I'm tired--bone tired to be exact--but I'm going to keep doing this because I love my kids, they need me, they deserve my time, and I only get one shot for them. But some hours, some days, some weeks, I have to decline doing too much extracurricular and keep it simple and stay home while the girls are at school and even on the weekends when my husband is home to help with the kids. This way I can fill up my tank for the more exciting stuff; like sled riding, baking cookies, and painting pictures with the kids I love the most. 😍💝

Covering up my Mask:

   

 

But underneath the make up is the person I don't recognize: my mask that I don't want to wear. When I look like this, my whole body feels like a hurricane.