Everyone Knows I'm in Over my Head

So if you read my previous post you know all of the medical tests and doctor appointments I’ve dealt with and the frustration from the lack of answers.

Then there was something I found out that I didn't know what to think about. 

The MRI I had done of my brain didn't show anything that would be causing the lightheadedness. However there was a cyst found in my brain. My mom was the one who talked to them on the phone. She came and told me- actually weeks after she found out because I had been in Indiana and she wanted to talk to me in person and let me enjoy my trip. Which now I'm glad she did. She told me exactly what they told her. That it wasn't harming me right now, but I need to have a new MRI every year now to check up on it and make sure everything's ok. I remember not knowing what to do or think or say. I kept my brave face on until she left the room, waiting for the door to be closed and then heard the footsteps go downstairs. Then that's when I broke down. Tears poured down my face-which can be perceived as being over dramatic but you have to understand how shocking that was for me. I was completely freaked out. Right then all I could think about was the worst possible scenario. What if it wasn't a cyst and they were wrong, or what if it grows. What if they have to do surgery? What if something goes wrong and I'm permanently impaired? For a good 10 minutes I just say there. Freaked out. Thinking of the worst possible cases of "What if's". I had JUST turned 17. But I pulled myself together a bit and called my best friend Aubrie. I honestly couldn't tell you our conversation exactly because that's all a blur. But I remember her being calm, I could tell it was strange and shocking to get too- she understood why I was so scared. But she was encouraging. She told me everything would be ok, and that no matter what God was with me and everything was in His hands, that He has a plan for everything. I pulled myself together, reminded myself that it's NOT bad now, and it may never be. So there's not need for me to worry. Everything in Gods hands and I'll be fine. I had a whole year to be "fine" then get another scan and be reassured everything was still ok. Well then a year passed. Then a month past that. Then another month. Here I was anxious and planning to get another scan done EXACTLY a year after the first-almost to the day. However that didn't happen, so as the days and months passed I started getting anxious again. I still to this day- now 5+ months passed the "1 year" mark-have not gotten a recent scan. Part of this has to do with my being gone so much but mostly it's because when my dad was laid off we lost our insurance, but through unemployment we have a different insurance. That's good except my previous doctor doesn't accept the insurance I have now so I can't go through her. That means I have to find a new doctor and hope they don't make it difficult to just get the scan done. I'm definitely struggling with the whole worrying and waiting part to all this. It's difficult to not think about what could happen or go wrong or whatever, but I’m trusting God and that everything is in His hands.

Last Friday I had my first appointment with my newest doctor- the electrophysiologist. It started out as a typical appointment. Answered the same questions with the nurses. Had my weight and blood pressure checked. Had an EKG. Then waited for the doctor to come back. 

It actually wasn’t too long of a wait for once. And for the first time ever before any tests or anything ordered through this doctor he walked in, discussed what exactly happened and how I felt when I passed out and right then and there he diagnosed me. 

It’s called Vasovagal Syncope. It’s one of the most common causes of fainting/passing out. However for me it’s a bit worse because most cases there’s a trigger- such as the sight of blood(which is extremely common)- but for me there is no trigger or connection. It’s just how I am. He told me what’s going on is I have faulty or sensitive “wiring” in my body. I’m a very petite frame and I have low blood volume. Because of that it takes more work to get the blood flowing to my brain, so I have somewhat low blood pressure. When my heart works more to get the blood to my brain it triggers the “faulty wiring” which then thinks that my blood pressure it high so it drops it. When in reality it was low and it basically just bottoms it out, cause me to become really light headed and/or pass out. 

So there was my diagnosis. I thought what next? How do we fix this? That’s where the big struggle comes. We don’t. It’s not something that can be fixed surgically or anything. It’s simply the way I am. The way God made me. I just have to live with it.

Those words keep ringing in my head. You just have to live with it.

I look back at the past few years and especially the past several months and see how much the way I've felt has gotten in the way I things. How much I've missed out on and stopped doing. I used to ride me bike a lot- I got an awesome brand new bike from my brother and sister in law for my 16th birthday but I rarely ride it anymore. I've let myself become lazy- not because I want to but because no matter what I do I feel horrible. Now it's all explained...but I just have to live that way. Missing out on things or just doing it anyway and ending up passing out or feeling really lightheaded. It happens just about any time my heart rate goes up. So I have to figure out how to just grin and bear it. 

There are a few things I can try to help but it doesn't promise fixing the problem. One I have to increase my sodium intake. Yes. Someone working in a cardiology department told a patient they SHOULD eat a lot of salt. Insane. So there's that. Then there is a medicine I can take that would raise my blood pressure a bit and hopefully help with the issues. I personally was not one to pop pills before but after struggling for so long I'd much rather take a pill every day and have it better than to continue with the way I feel now. 

Right now I just have to waiting until the tilt table test he ordered in March. This will help give us more to go on as to exactly how my body works. If you're not familiar with a tilt table test...well the name is pretty self explanatory. The object of the test is to hook me up to monitors and have me stand for 20+ minutes so the blood pools in my feet and I pass out. Now the danger with passing out is mostly injuring yourself when oh go unconscious and can't catch yourself. So to keep me from getting hurt the test is somewhat simulated. I'm strapped to a table that then is out in a vertical position.  Once I pass out they return the table to a horizontal position so I can quickly regain consciousness. I believe there was something mentioned about an IV- but I've had so many tests explained to me at this point they're all starting to blur. 

It’s such a strange thing for me to have that part of my life done now…sort of.  Since I'm  just living with it now its somewhat (ok more than somewhat) disappointing to me. I was hoping and praying for answers yes, but also to fix it. It's something I've really struggled with. Being content with an answered prayer even if it's not the answer I thought was right. God has a plan for all of this and he's blessed me greatly with so many wonderful people in my life and amazing friendships I've gained through this hard time in my life.  

Also, I've determined pickles by them self are certainly an acquired taste. Haha! XD 

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.