3 years, 3 months and 30 pounds later is what these photos represent. In May of 2018- just 10 short months after my return to Oregon, I was struggling with migraines, widespread joint pain, food intolerances, hot flashes, night sweats, fatigue, exercise intolerance, bouts of brain fog, suicidal ideation, poor body image, low self-esteem, depression, anxiety, chemical sensitivity, high stress, hypersensitivity, low motivation, and a plethora of things that don't jump to my mind at this moment. I was, as simple as I can state it, one hot mess. But hey-- I looked good, appeared happy, and some might say I even had a glow about me. Back then, I could still get my hair highlighted, I could drive distances, I could attend social gatherings, I could hike short distances, I could be out in the sunshine, I could even do a bit of yard work and even clean house.
3 years, 3 months and 30 pounds later I am (still) struggling with daily headaches, migraines, widespread joint pain, food intolerances, hot flashes, night sweats, fatigue, exercise intolerance, bouts of brain fog, suicidal ideation, poor body image, low self-esteem, depression, anxiety, PTSD, chest pain, shortness of breath, chemical sensitivity, unbalanced stress, hypersensitivity, low motivation, and a plethora of things that don't jump to my mind at this moment. I am, as simply as I can put it, one hell of a hot mess. I can no longer visit a hair salon due to migraines triggered by multiple chemical sensitivity which means I also can no longer have my hair highlighted (thankful to have inherited my mom's blonde grey!). I no longer am able to drive distances without provoking flares that put me on the couch or in bed. I can only attend limited social outings (which, by the way, have almost nothing to do with Covid restrictions). I can only walk and/or hike very short distances with provoking a flare that wipes me the F* out. I have to limit time in the sunshine and heat as now I get full body itch, rashes, and hives with exposure. And I am only physically able to make small attempts at cleaning house since pushing myself even 10 minutes beyond what I should triggers so much joint pain and inflammation that it can literally take days for me to recover.
I have to admit, it is a struggle to openly share my current photo. Thanks to the many supplements, medication trials, antibiotic therapies, diet changes, physical activity attempts, (etc. etc. etc.) that I have been put on to treat MCAS (mast cell activation syndrome) and suspected Bartonellosis (a group of emerging infectious diseases caused by bacteria belonging to the Bartonella genus) [credit: https://rarediseases.org] I have somehow morphed into the marshmallow (wo)man. I would love to say that I stand loud and proud, unashamed of the 'new' me... but in all honesty, my insecurities have come into full bloom and my self-esteem has take'n a whoopin'. This latest picture of me makes me question if the treatments are actually necessary. If I am indeed getting better, albeit looking much worse. If there will ever be a light at the end of this long, winding, sometimes very dark tunnel.
Depending on which site I happen to peruse on any given day, I am either traveling on the right track to being cured... or I am on the yellow brick road leading to radical acceptance- which involves giving myself permission to accept and to acknowledge that this is a health condition(s) that I will learn to 'manage' for my lifetime.
According to three top sources:'Fortunately, even though MCAS is not presently curable, there are many treatments known to be helpful for controlling the disease' [drtaniadempsey.com]'There's no cure for MCAS, but there are ways to manage your symptoms' [healthline.com]'To date, there is no cure for MCAS. The primary goals of treatment are to stabilize mast cells so that they cease to release their chemical mediators, provide relief of symptoms, and minimize known triggers.[verywellhealth.com]
Now I could read the above statements, all made by sources that I find credible, and I could hunker down and give up. Being told that your condition is not presently curable, that there is no cure- only a goal of treatments to manage and/or control the disease, is a pretty heavy hand to be dealt. Not too long ago, I was crying on the phone with my daughter over my current reality of losing my long-term disability because, as they stated, I 'look' fine (hello?! I have an invisible illness), I appear 'well nourished' (thank you, meds and inflammation), and my mast cell activation syndrome appears to be 'stable' (WTF?! smh). Something my daughter said really hit me right in the heart. She said 'You've been dealt a shitty hand, no doubt about it. But now you need to figure out how to turn it to Aces'. So... the truth is, I could stop taking my daily regimen of supplements & medications. I could stop all further therapies and/or treatments. I could stop all forward motion and just give myself a break already. And sure-- stopping treatment would feel A-mazing! You have no idea the time, attention, energy, commitment, and ongoing organization it requires (this doesn't touch on the cost... while struggling on disability wage). I could free up my time, my resources, my focus... the whole friggin' enchilada! But chances are high (extremely high) that it would be a train wreck. I could potentially even end up in the hospital. And I could find myself back at square one, starting over, losing all ground I have made thus far. The truth is, no matter how I try to spin it, I do have MCAS and suspected Bartonellosis. Choosing to deny that it exists would only delay my progress.
Today, even though I war with that extra 30 lbs that I didn't ask for, the 2 1/2 hours per day screen time hard limit, the growing list of foods I am unable to digest, the inability to be active, the daily headaches that bring the F* down, the sleepless nights, the mast cell flares, the forced short jaunts instead of the long open road country drives, the handfuls of pills and supplements that have to follow me wherever I go, the laundry list of limitations and restrictions that prevent me from doing things that I love... all of it, no matter the cost or the sacrifice, is teaching me a new way to live and a new way to see the world around me. Having an invisible illness, and all that goes with it, is a shitty hand to be dealt for sure. If you can relate on any level to what I deal with daily, BIG hugs to you <3. It is not an easy road to walk. But along the way, you do find those who are willing to walk that road with you--those who choose to hold your hand, cheer you on, offer assistance on the hard days, and to celebrate with you on the better days. I am so very thankful for those who have been willing to encourage, support, and cheer me on. They have been instrumental in helping me to see the big picture and to keep taking the next step or attempt the next treatment. And they remind me all of the time how lovely I am... not in how I look, but how my heart looks on the outside. I am so very fortunate. If I choose to look outside of my condition, outside of my restrictions and all of the losses... every where I look, I can see Aces!! #bartonellosis#mcas#invisibleillness
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