Inappropriate Reactions

I completely understand that my reactions are as all over the place as my symptoms. I have a twisted sense of humor, and there are times I enjoy pushing the boundaries just to see how people will react. I think if it's socially acceptable for a doctor to treat a patient the way I've been treated, it's perfectly acceptable for me to point out exactly how full of shit they are. On one hand, I hope there are people out there who've been through similar experiences and understand where I'm coming from. On the other hand, I never want anyone to have to go through anything like this. I have no problem whatsoever being the loud smartass if it means people wake up. There's no reason why someone living in America should have to fly across the country to find a doctor willing to treat based on symptoms who won't run away from a challenge. If me shouting and cussing and arguing and fighting makes the diagnostic process that much easier for people with lifelong illnesses then I will do it happily. Getting diagnosed with a long term illness at any age is hard; you taste your own mortality for the first time. It makes the term "forever" that much stronger, more concrete. More real. I read on an FDA announcement that the diagnostic process for Sjogren's has gone from an average of seven years down to four. And this is supposed to be a good thing? How many people have the time, money or will to fight that long for a diagnosis without giving up? Hunting for someone to listen, to take you seriously when you know something is seriously wrong with your body. If enough people tell you it's in your head, you'll start to doubt your own conviction. And because the insurance and pharmaceutical companies own everything in the US the doctors have to have blood work or a biopsy for treatment to get approved. The system is so screwed up. Medicine for profit is a joke. Doctors so often tack the easiest name on it, so wrong diagnoses happen far too often. It's disgusting. It needs to change. If the doctors won't step up and own their profession it's up to the patients. Get loud. Stand up and fight for yourself, no one else will.

I picked up the last of the records I needed for my trip to Cleveland Clinic today. One of them was the gastric-emptying study that diagnosed my Gastroparesis. All we'd heard at the time was the diagnosis from my doctor's nurse via phone. The actual results were interesting. I explained the test a little in my first post, but the gist of it is that you eat scrambled eggs that have radioactive something in them so they can track the progress through your stomach. According to the report, the average time for the stomach to digest the scrambled eggs is less than 85 minutes. After 323 minutes they ended the exam because my stomach still hadn't digested anything. From what I understand, the stomach has three main muscle groups, the top, middle and bottom. When you're eating the top is open and the bottom closed. When you're full the top closes, the bottom opens and the middle contracts. (Obviously not a technical description, sorry.) With Gastroparesis the stomach doesn't do the normal digesting process. No wonder I got so sick, drinking that much coffee and it all just sitting in my stomach. Blech. Sorry if I just grossed anyone out, I definitely just grossed myself out. 

I was reading the report walking back to the entrance and kind of cackled when I saw the numbers. I got a seriously angry look from a doctor. He calmed down when I told him, "It's ok, this is my report. I'm allowed to laugh at how ridiculous my body is". The concierge guy heard and laughed too. Glad my sarcasm provides amusement for someone other than me. Can I please find a doctor that gets this angry and protective over me? That'd be sweet. Just saying.

When I tell doctors my symptoms jump all over the place I get this look of "That's nice dear" and almost feel like they're resisting the urge to pat me kindly on the head. It's a good thing they don't, I don't think punching the doctor would earn me any useful treatment plans. Even if it'd make me feel better. Would it be too much to sit in an office and threaten to break something every hour they don't find anything useful? I'd probably get escorted off the premise. What I really want to do when this is all over is go to the doctor that told me it was a confidence issue, hand him the diagnosis and tell him to look me in the eye and admit that he fucked up. Public shaming is also an option. One of my best friends had a brilliant idea. Acting agents only get paid if their clients get hired and paid. How about doctors only get paid if their patients get better? It makes perfect sense to me. Insurance companies will only approve physical therapy if there's noticeable improvement. Doctors should be held equally accountable for their work, in my mind.

When doctors tell me, "Well your ______ [insert medical exam here] was all over the place. It wasn't stable the way it's supposed to be" they probably expect some kind of surprised reaction. At this point I just laugh. And then get disapproving looks. I'm supposed to, what, cry? Beg for their merciful help? I know they're all over the place. I figured that much out on my own, funnily enough. When I go from shaking under two fleece blankets and two down comforters in a onesie (and I wonder why I'm still single) to feeling like I'm going to pass out from the heat and then back to freezing cold in the space of five minutes I'm pretty sure it's not normal. Or when my arm, stomach, legs, hands and chest all have their own temperatures. And since my darling body doesn't sweat it's all just baking. No, sir, I had no idea my symptoms were atypical. I needed you to explain my body to me, thank you ever so much. I've just been going to every specialist I can find because wasting time and money is so gratifying. Tasers are fun. As are morons who can't find the veins to draw the blood work, even after I've told them which needle to use, at which location. Instead of telling me how royally screwed my body is, perhaps we could move on to the part of the conversation involving some kind of treatment plan? Maybe? And by treatment, I don't mean suggesting I wear socks when my feet turn purple and go numb. How much am I paying you for this visit again?

I'm joining an MMA gym when this is over so I can resist the urge to smack idiots upside the head.

Today the weird numbness and tremor-y symptoms came back in full force. They've been off and on for a couple weeks now but I stood up to pet my mom's dog and both legs went numb. It's a good thing I learned how to fall without hurting myself in dance classes. One of the most useful lessons I've ever had; I recommend it to anyone as skilled at tripping over their own feet as I am. So mom helped me get upstairs and once I laid down my legs felt fine but everything from the waist up went numb. And the second my head hit the pillow I had one of those sleeps where you literally pass out for about four hours. I woke up with my right arm having tremors.

On the bright side, getting ready for bed with numb arms and hands is a funny experience. My brush went flying three times and I knocked a cup off the counter seven times. The whole time I in there I was humming "I Feel Pretty" from West Side Story.

Musicals teach us so many useful lessons in life. Truly. When I finally have a treatment plan my reaction will be the opening scene of The Sound of Music. Once I find a pretty grassy hilltop with my mountains in the background. And a nun's habit. And a pretty little creek I can hopefully avoid falling into while I dance around on the stones.