Nobody Knows the Trouble I've Seen

This is my very first blog post, and it's a really long one. In fact I had to break it up a bit. This is the reason I decided to start a blog in the first place. I needed a place that I could use to share my thoughts and struggles and this very long struggle the past few years with health, family and friends. So if anyone actually reads all of this post- you deserve a gold star! So here goes nothing...


Sometimes I wonder how my life could be different if I were different. Not in the way that I could change, but in the way that I didn't have to deal with any physical pain or struggles. 

A little over two years ago I was in the emergency room after randomly passing out/seizing and had no idea why. This lead to many (MANY) doctor appointments with not one but FOUR different doctors- three of which were specialists (a cardiologist, a pulmonologist and an electrophysiologist). I had a lot of tests done, most of which any other "normal" person has never even heard of.

There was blood work. Several pulmonary function tests. A TON of EKGs. A 24- hour heart monitor. A chest X-ray. An MRI of my brain (which included contrast that made me cold and loopy). Used inhalers for a month. A methacoline challenge.  An echocardiogram. A CPET/ stress test- which I passed out at the hospital prior to the test and had it cancelled then rescheduled, then ALMOST passed out after doing the test. A chest CT... 

At one point I was told if the test came back normal they'd just determine there was nothing medically wrong and that it was all in my head. He said- and I quote- "I told another young girl and her mom this and she fired my ass on the spot!" I wonder why. Not very great patient care and you like to cuss. Ever think people might not like hearing that?  So anyway.. I was left with lots of questions. Lots of repeating the same things. Lots of frustration. And lots and lots and LOTS of waiting. 

I was starting to lose hope. Ok. Let’s be honest. I had pretty much lost hope after the first "normal" results. It was such a routine. A roller coaster that I knew the curves to but I kept getting back in line. I'd stay in Indiana as much as possible to be close to my love, and other friends and family, because it helped get my mind off things and helped me feel cared for. Then I'd rush back to Ohio for an appointment. I'd walk in arguing with myself in my head, debating if I thought "good" results would be finding something wrong to fix or finding out I'm "fine".

 I would be talking myself out of being hopeful. 

It was a vicious cycle. I'd cling to hope, walk into the office. Wait in the waiting room. Go through the exact same questions with the nurses. Wait for the doctor. Be fidgeting the whole time, anxious, nervous. My mind and heart would race when they finally walked in then once they started talking it was never anything encouraging to me. My results were always "normal". The doctors were always baffled but they'd think of some other test to resort to. I don't think I ever really heard half of what they told me. I always zoned out. I'd walk out of the room to the scheduling desk. Sit with Angie. Make an appointment- always months of waiting before the "earliest" spot. Schedule whatever test. Then wait. Go back to Indiana. Distract myself. Then start all over again. 

 I started becoming numb to it all. Frustrated and upset and exhausted, but also numb. It was the same thing over and over. The same pain. The same frustration. People try to help. Or don't. Regardless it felt like it made it worse. 

I kept everything from everyone for a long time. I'd act like nothing was wrong. Nothing was going on. Then it came to a point where I couldn't hide it anymore. But I wanted to. 

People hurt me. Whether intentional or not it still hurt. It took me a while to get to a place where I started telling people about my health issues and struggles. It was so easy for me to slip in and out of places unnoticed or uncared for and not have to let anyone else in or out them in a place to hurt me again. I was worried once I started telling people they would talk to me again but only out of pity. Only because they felt obligated to. So I kept things to myself. But then I got frustrated when no one asked how I was doing - or truly cared and stuck around for the answer. I started losing interest in people and faith in God. Why was I going through this? Were the family issues not enough? There were many times I'd wallow in self pity and feel completely depressed. I didn't want to talk to anyone. At all. Sometimes I would purely out of routine or just so I wouldn't have to deal with the "What's wrong?" Or "Is everything ok?" No. Everything was not "ok". But I didn't even want to answer those questions because I knew my answer would be received by shallow ears. 

Even once I let people in it wasn't what I'd hoped for. There were a few people who truly reached out to me and welcomed me back no matter how long I'd been gone, who didn't show resentment or bitterness and who truly cared about how I was doing. And for those people I am so grateful to be so blessed. There were people who truly stuck with me through everything and encouraged me. Who helped me keep my faith in God. Some people I'd known my entire life, some just a few years and some I'd known only a few months. 

It's been a long road full of hardships. I hurt myself. I lost hope. I hurt others. Others hurt me. I was upset with myself. I was upset with God. I was always wondering and questioning everything. I lost friends. I lost a lot of people in my life. 

There was some good too though. I gained true friends. I’ve gained encouragement. I've gained patience. I’ve gained understanding. I've gained a lot more knowledge of the medical world, and how to get around Aultman Hospital. I could tell you how different contrast injections make you feel. I could tell you everything that's NOT wrong with me. I’ve gained an appreciation for those who have to deal with things worse than I had it.