My youngest daughter has always struggled with being overwhelmed by sensory things - sounds, lighting, smells, and even just the presence of other people in the same room. We never fully understood what she was experiencing - people would call her shy, quiet, even rude. She struggled in school not because the work was too…
You have read my rants about doctors in the general medical industry and my frustration with their lack of compassion and understanding. If you weed through my posts, you will also find glimpses of interactions with doctors who genuinely care and who truly listen. When I first started seeing doctors at Stanford in 2013, I…
I've lost several friends in recent years to cancer - and I've seen friends battle and fight and suffer that cruel disease. I have nothing but respect for anyone who has been in that trench. I do not discount the terror that comes with a cancer diagnosis. It is horrible, it is painful, it is…
Some days my sickness is only as deep as my knees. I may have a mild headache, a little joint pain, and maybe some nausea...but I'm able to get out of the house, go to the store, cook a meal, spend time with my family and maybe even do a little laundry. This is a…
Every aspect of the chronically ill life is vastly different from the healthy life. And with those differences comes a feeling that we are not "normal". And we're not! And that's ok. It's what we do with the minutes of our abnormal life that counts. Every night, every person on the planet lays down, closes…
I've been back in Kansas for another 5 days of treatment. It's once again been such an encouraging experience - leaving me filled with hope. I was in a lot of pain when I got here and feeling a little discouraged, but my pain level is down today and I am leaving with new tools…
In addition to daily doctor visits, you spend 5-6 hours in various therapies each day. These are tailored by your doctor to the needs of your body. Let me take a moment here to say the gals who coordinate these therapies are essentially a therapy in themselves with their smiles and laughter, and the love…
I post an awful lot about Lyme and tick disease. I sometimes feel like I'm being obnoxious about it and I wonder if others get tired of seeing it. And then I get a text with a picture of a perfect bullseye rash with the question: "Is this Lyme?" I hate that Lyme continues to…
One of the hardest things I've had to adjust to as a chronically ill person is balancing the various worlds I live in. I live in 7 worlds. Occasionally two or three of these worlds harmoniously overlap, but more often than not, these distinct worlds live in extreme competition with each other. 1.) Faith in,…
"Everyone fails at who they’re supposed to be. The measure of a person, a hero, is how well they succeed at who they are.” ~ Frigga (Thor’s mother) Avengers End Game I have an image of who I am supposed to be. It’s largely based on who I used to be, what I used to…
PhilippiJoy 