A Diagnosis and Loads of Questions

by | Jun 30, 2018

It’s been a rollercoaster of a week.

June 30th. It was a year ago today that my breathing issues started. I was flying home from our mission trip to The Republic of Georgia.

This time last week I had just gotten home from Cleveland after more tests.

I think I’m at 19 tests if you don’t count blood work.

June 21st was a combined birthday celebration day for my husband and a day of more tests at the Cleveland Clinic.

We got to enjoy lunch at a sweet and healthy place called The Townhouse. I’d love to have one of these in Cinci. Paleo, vegan, keto, vegetarian friends rejoice—and drive yourselves to Cleveland for a delicious meal with a sweet atmosphere (anyone else tend to care more about atmosphere than food sometimes?). We found an alleyway downtown with outdoor seating for delicious restaurants and fun string lights (4th Street, for you Cleveland dwellers) and it was magical. We drank strawberry lemonade on the rooftop of a coffee shop (because we started our morning with huge coffees and couldn’t have more caffeine). We saw a late night showing of Jurassic World. And somewhere in the middle of all of this I was strapped to tables, wrapped in wires, put into machines, shocked and poked with needles.

I’m really starting to get used to all of this.

But surprisingly, I’m not used to waiting, and this week included more waiting.

I may have a diagnosis, but I’m still waiting.

So, Monday rolled around and I got a call from the local rheumatologist I was scheduled to see in August and they had a cancellation for the next morning. I had more blood work done, but the doctor didn’t seem to bring any new revelations into my medical world, so I left less than hopeful.

Except that I had some hope because I don’t know how to not hope.

And wish.

And pray. A lot.

Monday, I also decided to start eating paleo to see how it made me feel. And truly, food and cooking have been my enemies over the past three years and I decided we needed a better relationship, me and food.

After the rheumatologist I decided I couldn’t wait for my tests any longer and I called Cleveland Neurology.

“Hmm. Well, all the tests are here but I don’t see anything. So, it looks like they are normal or negative. I’ll have the nurse call you this week to go over the results.”

My heart sunk a little. But I held on to the hope that she seemed unsure of herself. I also held onto the blood tests rheumatology did.

My blood results started to roll in later that afternoon on MyChart, but they were all normal. My favorite word, if you haven’t noticed. . .

Wednesday morning I saw that rheumatology was calling and I prepared myself for some good (bad in the world of most people, because most people don’t want a diagnosis. Good for my world because I want answers) news.

“The doctor wanted me to call you to let you know all of your lab work was normal.”

I tried to hold it together for a few minutes, but I couldn’t pretend I was fine and I lost it.

I sobbed. I didn’t stop it. I didn’t stop the angry thoughts I had toward God. The inner screaming, “Why? Why have you brought me to dead end after dead end? Why am I wasting my time and money if this is all nothing? I don’t get it. I’m done.”

But nothing brings comfort like your mom’s voice. Praise God for mom’s and the comfort God brings through them. I still get teared up thinking about the constant comfort I’ve found in my mom through my 25 years of tears.

I didn’t change my thinking, but I felt less emotional and more clearheaded as I continued throughout the rest of my week. I mean, I’m not used to making three meals a day every day, so that provided quite the distraction.

But everything changed on Friday—at least I think so.

Friday I got a call from the neurology nurse. I had given up on hearing from her and answered the phone knowing exactly what she was going to say.

I wanted to say, “yeah I’m normal. Thanks.” But of course I was eager to listen (because I just can’t stop hoping).

“So your MRI and EMG were normal. But your Tilt table test showed you have symptoms consistent with POTS.”

I didn’t think much of it then because my understanding of POTS was simply a syndrome where you get dizzy when you stand up. In fact, I was so focused on breathing issues that my symptoms that fit this syndrome seemed so normal to me. Doesn’t everyone get dizzy when they get out of bed in the morning? Doesn’t everyone get purple feet when they stand too long? It wasn’t until I started reading the symptoms and information about this syndrome that I started to make a lot of connections to my current illness.

What I’ve learned is POTS affects your autonomic nervous system and presents symptoms such as dizziness or lightheadedness upon change in position, fatigue, headaches, heart palpitations, exercise intolerance, chest pain and shortness of breath (check x7). People who suffer from this syndrome can become very tired during daily activities (that’s me!). There are a lot more connections I’ve made since reading more information and looking back at my symptoms, but I don’t think I have the expertise to draw too many conclusions. It seems to be a syndrome that presents itself very differently in different people since it is a malfunction of the nervous system.

I’m hesitant to rejoice in this answer because I don’t know if it truly is my answer. I have to wait for my neurologist to get back in town to ask his thoughts based on my symptoms and my test results.

Maybe he won’t know the answers to my questions and I’ll be left to try symptom management for awhile to see how I feel.

Maybe I’m so skeptical because I’ve been so let down over the past year, that I truly can’t expect much good or helpful news. I thought answers would be more exciting to me than this, but I find myself squinting suspiciously on the inside, waiting for someone to say, “Just kidding, that’s not it, you’re actually normal.”

I sure hope that’s not the case.

Here’s to clinging to a God who knows every inch of me and does not withhold good gifts to his children.

Maybe this truly is the end of my diagnostic journey. I’m just so hesitant to get my hopes up.

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