Beef, Xolair and Hopkins, oh my
Sooo much to say today… I have been remiss in writing, and that is for a number of reasons. Some selfish and others because I just can’t put my feelings down on paper. Jeffrey (a.k.a Clive) reminds me that writing helps me and it is my legacy to the kids….that one day they will read these posts as adults and understand their mom and childhood a little better.
I have started the “miracle drug” Xolair and well so far it’s not my miracle… Jeff and I went through so much red tape to get me the shot. We were denied more than once and put together a packet of over a hundred pages, with doctor’s notes, personal statements, studies showing it should work for me, and statements from friends who have witnessed my health in decline. So when after two shots (and two months), I see nothing, and when the leading expert at Hopkins tells me to sit tight till January… well my patience is thin.
On Friday a cold roast from the fridge, sent me into a downward spiral. The simple task of taking a roast out of the fridge, letting it sit on the counter for 30 mins and then dredging it in flour to sear it, caused anaphylaxis yesterday… You can imagine why I’m pissed. I was alone, trying to wow my family with a simple comfort food dinner. The simple act of prepping a roast for the crock pot. One would think that wouldn’t be a lot to ask. I just wanted to make Jeff’s life a little easier. And the whole catastrophe began… Rash up both left and right arms and hands, gagging, coughing, could not breathe, headache, nausea, joint pain along with the overwhelming desire to sleep, and o’P.S. the hangover effect today….
I’ve got this. I’ve been to this rodeo too many times to count. I by no means take it lightly, but I don’t panic either, I’ve got it, take the meds, relax, text the important players, let them know I’m in distress, sit down and manage it. I’ve got it, no trip to the hospital, but it was close… So when the esteemed doctors from Hopkins tell me to wait till January for his wonder drug to work…. Well I hope he had a nice dinner; because mine almost killed me. Oh and the best is when my 9yr old says,”mom this is not to my taste, I’ll just have the noodles please”… I just laugh, I mean really laugh… Because my whole day imploded just cause I wanted to have a simple family dinner from the crock pot!!!!!
This is life, the beautiful, the messy the unpredictable. No one wants this shot to work more than me, no one. My kids will have the last combined field trip to the pumpkin patch this year. My first and third graders are so excited, together on the same bus, the best pumpkin picking ever…and my beauty, asked me if I was going…. And the look on her face said it all… how when you are six do you wrap your head around the fact that mom lives in a bubble… She can’t chaperone a trip to the pumpkin patch if the temp is less than 70 degrees.
Oh, and from my field trip to Hopkins I added a few new issues that were not in play before…
I now have hives from cold, hot, evaporative, exercise, from dermographism, which means when I wrap myself in a towel the towel mark causes a hive, or bump myself on a chair, or put a blanket on my legs, the cable knit pattern causes hives… it is so ridiculous I can barely type it out… but again wait till January, to see if the miracle shot will work…
Harvard has no idea but he says “we” often when we talk, I know next to Jeff he has my back, I know he is invested in my health, I’m sure he is failing that course in keeping the wall up between patient and doctor. But F it, sometimes when things are bad you need that, someone who is pulling for you and up nights worrying about you… If not why did you become a doctor. He has never lost his objectivity, his professionalism, but we are an unusual doctor/patient, I’m well aware of that.
He takes one look at me and knows mind, body, spirit where I am. He knows when Jeffrey is tired; he worries when my kids are sick, because he will fix it when they pass it to me….
This doesn’t make him a bad doctor it makes him a human doctor. As Aristotle would have said, it takes both Art and Science. Medicine is made up of too many things we don’t understand…but the spirit is something we can’t miss…
Today, look in your world to make a little sunshine…but don’t make a roast!
Peace be with you, Kathryn