Gerardsmomutah

We've been home from Mayo almost a week now. I miss it already. I miss the professional friendliness, the transparency of medical records, doctor's notes and the seamless way the system works administratively. I miss waiting "standby" to get in when we need to get in, and I miss the maximum allowed family members in the clinic. It's a crammed space here. I miss the overall seriousness that we have a kid who is sick enough to be in the said space to begin with. And I miss people looking me in the eye to talk to me = not a computer screen while we discuss why we are here and what happens next. What happens next? We wait 3 weeks for a test. And then we wait some more. Because as usual, Gerard doesn't "look" sick on the outside. Except they can't see that he's blistered and sunburned under his t-shirt. Because the sun penetrates the sunscreen and the tee and he burns because of the medication he takes. All before 9:30 am. Two layers...

How is it that providers know you are paying for medical care out of pocket? You're referred to as a "9" or an "8" or another secret charting system, which, if you're anything like me, you crack the code immediately by looking left and right, and listening to comments.  We aren't alone. Half the folks we see are paying themselves. This is s last resort spot - think "destination" healthcare where they are expanding! It's on the front page of all the papers. Genomes, biomes and hormones. Everyone who works here is sharply dressed, educated and polished. Reputation is like the Ritz, Disney and The Met all rolled into one. Let's face it, the art here is worth the trip. I digress... Mayo. Where the world comes for amazing, state-of-the-art care. Where you may wait, like us, a fifty with an 8-yr. old for five hours (yesterday), to see someone as a "standby" patient (called, "checkers") and not see anybody. Because, as it t...

How to handle life when you need help. Accept it. Because you know that when you can help others, you do. So...here it is. And here we are. I don't feel the need to share every single symptom or detail of what's going on with his illness, because I'm consistently met with the reaction of, "Well, he looks great to me!" OK. He looks great. But what you don't see is this happening every day after school: His fatigue level is such that the minute he sits in the car, he's flopped over in five minutes max. It happens at the dinner table (again), which is what happens when he's about to flare. Why is this happening? We don't know. He has a hematoma on his cheek because he fell out of his bed on Monday night. (He didn't want to wake me up)... My kid! Which is why we need to get to the Mayo Clinic to figure this thing out. Yes, I realize he looks great to everyone. Yes, that is the stigma of a "hidden" disease. What don...