I got about 30 minutes into the conversation and paused. I was trying to figure out what the doctor across from me was thinking and wishing I had the ability to read her mind. Most doctors have perfected what I like to call professional poker face. They listen to your story with absolutely no expression and then later, when they’re giving you their assessment of the situation, they give you their opinion in an impassionate manner. When you deal with doctors all day long, this can be a little frustrating. Especially when you have a story like ours so I blurted something out that I’ve always wanted to always avoid…
“Am I sounding crazy?” I asked.
I am far from crazy. I’ve tried to remind myself of that fact as we’ve told our story to countless doctors the past few years. What makes me certain that I’m not losing my marbles or making up any parts of our tale is that I’ve written about the majority of this journey along the way. So, if I ever doubt that I’m embellishing or my mind is playing tricks, I can go back and read it all. It’s all there and it’s all true. I not only journaled almost every big moment, I tried to keep an open mind and give all the players the benefit of the doubt until there wasn’t any left. I tried to be diplomatic. Sadly, I think I may have been a little too long.
When I listen to myself tell the story, even I think it’s crazy. When Rosie was five weeks old, I went to the doctor and said something was wrong. She didn’t sleep and couldn’t feed. That was almost seventeen years ago. And as she grew, there were lots of little clues that she was not like other kids her age. Developmental delays. Strange illnesses. Lots of stomach issues. I was told that everything would be fine and I believed until it all started to get out of control. The stomach issues were really migraines that went untreated for years and when they finally were, they weren’t. Puberty hit and suddenly, I had a very sick girl on my hands and I started to search for answers. That’s when the real crazy began.
I suddenly found myself in a constant battle with doctors and school. The doctors threw medications at her that made her depressed twice, making it hard for all of us to function (and convince them that she wasn’t). School didn’t really know how to accommodate us and it was a huge battle. And, then on top of it all we had a cancer scare after a couple of really bizarre sports injuries that don’t happen to teenagers. I’ve never confessed it but I often wondered if my child enjoyed being sick or hurt since no one would give me a good reason why this was all happening. I’m sure that some of the doctors did too but I kept searching for answers.
Then one day, my daughter spit up a blob of blood in a Walmart parking lot. It was right there on the pavement. Bright red. At first, I wasn’t that concerned, but as the days went on and there was more and more, it was time to figure out what was going on so we were hospitalized and put on observation while they searched for the issue.
If you ever want to feel a little crazy, tell someone that your kid is spitting up blood. There’s almost a 100% guarantee that they’ll look at you like you’re nuts because spitting up blood only happens on television shows. If you want to feel completely insane, be sure to tell them that it’s 16 or more ounces in a sitting because that is simply impossible. When you make a claim like that, you wind up in the hospital with someone watching your every move 24 hours a day because you have to not only be crazy, you have to somehow be hurting your own child. I have to admit, it’s more than a little validating to watch your child throw up blood all over a hospital room floor when no one believes you. And, even more gratifying to watch them scramble to figure out what to do next. My answer? You clean it up.
That blood started a crazy odyssey. Not only did we see almost every department at our local children’s hospital, we went to the Mayo clinic. We told the Walmart story hundreds of times and after a while, it was humorous to see the looks on people’s faces when we talked about it like it was normal (because after a while, it was just part of every day). But what is really crazy, is sitting here 33 months later, no one has been able to figure out where it’s coming from. It just is.
Our story is crazy too.
In the past three years, my teen has been diagnosed with POTS, PLEVA, EDS and we found out she’s had vestibular disorder since birth. She’s had excessively high blood pressure and incredibly low. She’s had a massive head injury. A confusional migraine that had her seeing goats in our backyard. A botched lumbar puncture. Some kind of flesh eating bacteria that stumped the infectious disease team at our hospital. And, she had Superior Mesenteric Artery Syndrome. None of those things are normal.
We’ve had a psychologist say to her “don’t you want to be normal?” A neurologist that wouldn’t see her on two different occasions six months apart fire us. And, a rheumatologist misdiagnose her with a pain problem after a 15 minute visit. We even had genetics call us and tell us they couldn’t help us. That’s crazy.
I found myself telling all of this to a doctor in Cincinnati this week. Giving her the entire history with a lot of back and forth because I found myself giving a piece of info and then realizing she needed the backstory. She was staring at me intently the entire time and I couldn’t tell if it was professional poker face or if she was trying to figure out if I had Munchausen by proxy. So, I asked the question that I dread….
“Am I sounding crazy?” I asked.
She reached across the desk, touched my hand lightly and said, “No, you’re not and I’m sorry for everything you’ve been through.”
I breathed a sigh of relief and continued on with our story finally knowing we were in the right place to get help.