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Yesterday afternoon I received a phone call from the neurologist. I didn't recognize the number, so I let it ring into my voicemail. In the message, he said he had reviewed the results of my tests this week. The good news, he said, is that it isn't anything neuromuscular in nature. The testing could effectively rule out myasthenia gravis or anything along those lines--and the neurologist who performed the study specializes in those diseases. The only frustration, he said, is that it didn't lead to a diagnosis. Given all the negative tests, "I don't have anything further to pursue."
Another closed door.
I hung up the phone, already feeling the tears welling in my eyes. It's not that I expected a diagnosis--I truly have braced myself for a long road to finding a label for this. But to be cut loose, again, from a doctor--to be told "we don't need to see you again"--that is the part of this process that has been so discouraging.
Micah was out most of the day yesterday, so I sent him a quick text to fill him in. I went down to the basement to grab more toilet paper for the upstairs bathroom. The packaging caught on the shelf in the laundry room, and the whole thing flew out of my hands and landed on my feet. Suddenly I was furious. I picked the package up and flung it across the room. I started sobbing--the kind of sobs that sound more like gasps for air--just as Thomas stepped into the room. "Mom? Mom, are you OK?" I couldn't answer for a minute. Finally I told him the doctors didn't have any more tests to run right now, and didn't want to see me back in the office. Cora and Henry came in, and all three wrapped their arms around me as I cried. After what felt like an eternity I pulled myself together, dried my eyes, and apologized to them for scaring them. "Some days are just hard days, guys--even for moms and dads. Thank you for just being with me while I cried."
I came upstairs a few minutes later and all three kids were grinning at me, hands behind their backs. "We've got just the kind of medicine you need, Mom." They held out their hands, and they were full of Hershey's kisses and candy canes from our candy tin. Thomas led me into the living room, "Look, Mom. I have your old teddy bear and one of your favorite kids' books--I know these will make you feel better." I did feel better, but it had nothing to do with candy and teddy bears. These kids are learning amazing things through all of this.
In the evening, Micah and I finally had some time to talk. We talked through next steps, doctors, symptoms, everything. We prayed about it and slept on it through the night. In the end, we've decided not to pursue any more doctors or tests for at least three months. There are a number of reasons, and not least among them is exhaustion. The past months since December have been relentless. The parade of appointments, waiting for results, and roller coaster ride on the road to diagnosis have left us feeling ragged. We need a break. Taking some time will also allow the symptoms to progress. While I don't want to get worse, we've recognized all along that until I do, it may be difficult to pinpoint the cause of all of this. It changes some of our conversations about how we manage this thing--without a diagnosis, there's no hope that treatment will alleviate the symptoms and make life easier. We will continue to pursue a diagnosis, and we have an idea of next steps when the time comes. But for this time, rest means taking a break from chasing down a name for this.
At first the thought of being without an immediate next step was terrifying to me. How would we manage this without a doctor of some kind digging through the layers? How would I cope without the anticipation of some kind of treatment? What would it be like to be in a relative free fall for a few months? Then I realized how many hours I've been consumed by test results, studying diagnoses, forcing a fit, and muscling my way through to make things work. I've talked all along about rolling over and floating on the waves--the past several weeks have looked far more the like the thrashing and flailing I'd been trying so hard to avoid. For the first time, not having anything "next" felt like a relief. I felt like I was looking at a blank page, and I didn't have to write any of the words that would eventually fill it. Our future is wide open to take a day at a time. There's nothing "next"--there's just a blank page that we'll fill day by day. I'm excited about the idea. And as Micah says, "Let's go with that excitement for as long as we can."
Another closed door.
I hung up the phone, already feeling the tears welling in my eyes. It's not that I expected a diagnosis--I truly have braced myself for a long road to finding a label for this. But to be cut loose, again, from a doctor--to be told "we don't need to see you again"--that is the part of this process that has been so discouraging.
Micah was out most of the day yesterday, so I sent him a quick text to fill him in. I went down to the basement to grab more toilet paper for the upstairs bathroom. The packaging caught on the shelf in the laundry room, and the whole thing flew out of my hands and landed on my feet. Suddenly I was furious. I picked the package up and flung it across the room. I started sobbing--the kind of sobs that sound more like gasps for air--just as Thomas stepped into the room. "Mom? Mom, are you OK?" I couldn't answer for a minute. Finally I told him the doctors didn't have any more tests to run right now, and didn't want to see me back in the office. Cora and Henry came in, and all three wrapped their arms around me as I cried. After what felt like an eternity I pulled myself together, dried my eyes, and apologized to them for scaring them. "Some days are just hard days, guys--even for moms and dads. Thank you for just being with me while I cried."
I came upstairs a few minutes later and all three kids were grinning at me, hands behind their backs. "We've got just the kind of medicine you need, Mom." They held out their hands, and they were full of Hershey's kisses and candy canes from our candy tin. Thomas led me into the living room, "Look, Mom. I have your old teddy bear and one of your favorite kids' books--I know these will make you feel better." I did feel better, but it had nothing to do with candy and teddy bears. These kids are learning amazing things through all of this.
In the evening, Micah and I finally had some time to talk. We talked through next steps, doctors, symptoms, everything. We prayed about it and slept on it through the night. In the end, we've decided not to pursue any more doctors or tests for at least three months. There are a number of reasons, and not least among them is exhaustion. The past months since December have been relentless. The parade of appointments, waiting for results, and roller coaster ride on the road to diagnosis have left us feeling ragged. We need a break. Taking some time will also allow the symptoms to progress. While I don't want to get worse, we've recognized all along that until I do, it may be difficult to pinpoint the cause of all of this. It changes some of our conversations about how we manage this thing--without a diagnosis, there's no hope that treatment will alleviate the symptoms and make life easier. We will continue to pursue a diagnosis, and we have an idea of next steps when the time comes. But for this time, rest means taking a break from chasing down a name for this.
At first the thought of being without an immediate next step was terrifying to me. How would we manage this without a doctor of some kind digging through the layers? How would I cope without the anticipation of some kind of treatment? What would it be like to be in a relative free fall for a few months? Then I realized how many hours I've been consumed by test results, studying diagnoses, forcing a fit, and muscling my way through to make things work. I've talked all along about rolling over and floating on the waves--the past several weeks have looked far more the like the thrashing and flailing I'd been trying so hard to avoid. For the first time, not having anything "next" felt like a relief. I felt like I was looking at a blank page, and I didn't have to write any of the words that would eventually fill it. Our future is wide open to take a day at a time. There's nothing "next"--there's just a blank page that we'll fill day by day. I'm excited about the idea. And as Micah says, "Let's go with that excitement for as long as we can."
