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I was anxiously waiting for my name to be called in yet another poorly-lit waiting room. Doctor’s offices were once just an occasional means to an end: I went feeling shitty and I’d leave with a script from the omniscient doc to feel better. Now, they’re as common as my trips to the grocery store, […]
Read MoreMy particular IVIG dose goes on for 5 days in a row/ 5 hours a day so these suggestions may not be appropriate if that’s not your treatment plan. This list came about after 4 treatments, a few mistakes, and the experience of a couple very smooth treatments: 1. Stay Hydrated – I drink at […]
Read More“…But let there be spaces in your togetherness, And let the winds of the heavens dance between you. Love one another, but make not a bond of love: Let it rather be a moving sea between the shores of your souls. Fill each other’s cup but drink not from one cup. Give one another of […]
Read MoreIf you’re like me and terrified of any extra Mercury finding its way into your system then you are probably looking for special ways to introduce omega fatty acids into your diet without also consuming fish. Omega 3 and 6 are necessary, AND it’s not necessary to consume any kind of fish in order to […]
Read MoreFollowing up with last week’s post, this is an update of how it’s been going on the East Coast. In summary: better than expected! I’ve been almost myself. It’s been exciting to watch myself do a lot of the things that I couldn’t do even six months ago. Getting off of the plane last week, […]
Read MoreTHE PART OF GETTING WELL YOU CAN’T BE PREPARED FOR: I am red and dizzy, hot and overtired sitting at LAX waiting to board a flight to NYC. It’s my first time solo in an airport without wheelchair assistance in almost 2 years. It’s a flight that I’ve diligently avoided for over 2 years- unable […]
Read MoreI said, “I am down, lonely and afraid.” To better help you understand how I’ve felt over the last couple years, I used the analogy of a person laid out on the concrete, getting their face bashed in. I asked all of you to meet me down there, hold me, ask me where it hurts, […]
Read MoreMy body was breaking out in mysterious rashes. I’d discreetly lift a pant leg to reveal the repellant red rash and ask people what they thought. They’d say, “ Huh, that’s weird, but I promise you it’s no big deal.” Or, “Don’t worry so much.” Or, “Be positive. Have positive thoughts.” I was positive when […]
Read More10. I wear therapeutic bras: That’s right. One of my bras looks like the bra Robin William’s wore to play Mrs. Doubtfire. Yes, the under garments of my sexy 28 year old body are that of a 50 year old drag queen. I started experiencing regular breast pain just months into my diagnosis. I braced […]
Read MoreSince the beginning of time, unclothed people of all races and all places were preaching what the Beatles put into pop music centuries later: “All you need is love, love, love is all you need.” Today the message is everywhere. It’s in the cliché, framed decors from Target, hanging in the hallway of many suburban homes, […]
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