As many of you know I’ve been dealing with some recent health issues. It’s weird saying “health issues” because I’ve been told more than once my blood work is completely perfect. I guess that’s the scariest part. For most people it’s encouraging. For me, it leads to more confusion, frustration, exhaustion and worst of all, fear. Fear that what I’m going through won’t just be a simple spell or small part of my life’s journey. I fear it may be forever, and I fear I may never be the same.
To give a little clarity as to what I’m talking about let me first explain what it is that’s happening and how long it’s gone on.
A little over a year ago I was in the bathtub. Yes, I like to take baths. And yes, I know it’s weird.
But as I laid there relaxing, an odd feeling came over me. One that left me unable to feel my legs. It wasn’t necessarily that my legs were numb, it was that I didn’t feel like I had legs. It was the scariest thing I’d ever experienced. And I’ve been shot before. But as I rolled out of the tub my legs finally came to and I stood up making sure I was stable. As quickly as it came it rapidly disappeared. But the thought of it sure didn’t.
I would continue to briefly have these episodes but they were so far separated that I didn’t mess with it. I mean, what if I go to the doctor and something is actually wrong? What then? So naturally I continued to ignore it.
But that wasn’t the only symptom I noticed. I was walking on the Plaza in KCMO one afternoon and my legs felt so heavy I could barely lift them to walk. It was as if I’d eaten a bag of concrete and it all sank to my legs.
A few months after that I had an episode where I felt like I was completely drugged or going through some sort of withdrawals. My heart rate was elevated to the point of almost bringing on a panic attack and I didn’t feel like I had control over my body. But as quick as it showed up it went away. And so did my concern to go to the doctor.
But finally one day it hit me hard. So hard in fact it landed me in the ER. I stood up to go to the bathroom and I about passed out. This time it came with a heavy head, extreme light headedness and complete exhaustion.
After blood work, an EKG test of my heart and an x-ray of my chest, all seemed normal. The doctor game me some fluids through an IV and said I was likely dehydrated and low on electrolytes. Made sense because the night before I went out drinking.
But even after the ER visit I still didn’t feel right. My head would feel heavy to the point it hurt my neck to hold it up. I would get overly tired and exhausted doing simple things.
I then decided it was time to see the doctor and find out what exactly was going on. They did the typical tests, blood pressure and such, and then set me up for some heart tests. In the midst of it all they found out I had sleep apnea. And it was that “ah-ha” moment, where I thought I had found the cause of all my issues.
But unfortunately the symptoms didn’t stop and I was once again left dumbfounded and frustrated. It also didn’t help that all the heart tests came back negative, meaning I had a healthy heart.
At that point I gave up on the doctor and figured I’d just keep using my CPAP machine with hope that one day I’d wake up feeling normal again.
Little did I know the worst was right around the corner.
One morning I woke up, of course after a night of drinking with friends, and I could barely move. My entire body was so stiff I couldn’t open my mouth. I was terrified. I didn’t want another ER visit just in case it was something that would go away the next day.
But the next day after having troubles breathing, I had to go to the ER. And once again, I was told I was perfectly healthy. As frustrating as it was, it was nice to hear I didn’t have cancer or any other life threatening illnesses. I still needed answers, though.
I scheduled a doctor visit for that Friday to start digging in again and to finally figure out what was going on. As the week progressed I felt better. Friday came along and I felt almost 100%. So, I called the doctor and canceled my appointment.
Big mistake as that night would be one of the worst nights of my life.
I had decided I wasn’t going to drink that weekend and just wanted to quietly relax. So I made chili and kicked back.
As I got up to walk towards the kitchen and check on the chili a huge rush hit me. It was so powerful I almost passed out and it knocked me back onto the couch. It was as if I could feel my blood rushing from my chest to my head, and then back down to my chest. And while this was all happening I lost all motor function.
Then as I laid back on my couch my heart started racing. And when I say racing I mean it was beating so fast it hurt and I was just about certain I was going to die. I even reached for my phone to call my mom and tell her I loved her before my inevitable doom.
But my heart calmed down just enough to take away the scare of a heart attack. I still couldn’t stand up, though, and I sat there on the couch shaking and wondering what the heck I was going to do.
I called my mom and asked her to come up the next day so she could help me get around and maybe we could go to the ER. But as the night went on the symptoms didn’t improve, and in some cases got worse.
At that point I had to call a friend and to take me to the ER. I could barely walk or function and I knew something had to be done. But for the third time after some additional testing the doctors told me I was perfectly healthy.
How could I be healthy? I barely walked in and barely walked out when they discharged me. The utter dismay and hopelessness had sat in deep at this point and I felt as low as I ever have. I literally felt trapped inside my body without a key to get out.
One thing the ER nurse did suggest is maybe an anxiety medication to calm my nerves a bit so the symptoms aren’t as bad while we figure this all out. Thank goodness she did that because so far it’s been a life saver. Without it I’m not sure where or how’d I’d be.
But after that visit I went into investigation mode. I went back to my doctor and then proceded to see an Ear Nose & Throat doctor and a Neurologist. I’ve done testing for vertigo, ear infection, MRI both low and high contrast, and some tests for POTS. Through my blood tests they’ve ruled out things like cancer, liver disease, heart disease, kidney failure, Lyme disease, and many others.
The MRI also came back negative and it appears I have a normal functioning brain and nervous system. Who would have thought? I can tell you my friends wouldn’t believe me if I told them.
Okay, bad joke.
But moving on…
With all of these things ruled out the next step is to do a deeper dive into my heart. So they’re having me wear a 30 day heart monitor to catch any abnormalities such as a micro valve prolapse, which has the same symptoms as POTS. It can require serious heart surgery but at least there’s a way to fix it.
Either way until the 30 days is up on my heart monitor the only thing I have to do is wait and make sure I’m eating healthy and staying hydrated. Also, and the most painful of all, no booze. I don’t want to sound like a alcoholic because I’m far from it, but man I miss beers with my friends. It’s a stress reliever and much needed.
But, I can’t focus on that. Not any more. I need to stay positive and put my full focus on finding out this diagnosis and then dealing with it.
And so far it seems the odds are in favor of POTS. To give some more clarity on what it is, it’s a issue with your heart either not pumping your blood properly or your blood vessels not opening enough to get the needed blood to your body.
This causes symptoms such as fast heart rate, lightheadedness, foggy brain, trouble breathing, extreme fatigue, blurred vision, anxiety and intestinal issues. And I’ve felt every single one, and some more intense and unpleasant than others.
I’d say the worst of the symptoms is the extreme fatigue, the lightheadedness, and the foggy brain. They’re the hardest to control and bring in the most anxiety. And the simplest things, like walking around in the grocery store are like running a marathon. Afterwards I feel exhausted and to the point I can barely move my arms or legs.
These symptoms have even effected my work production. But most importantly it’s effected my personal life.
I can’t go out anymore or have drinks with friends. Which doesn’t sound like a big deal but it can really improve mental health getting out and relaxing with your close ones. Who knows when and if I’ll be able to enjoy that ever again.
But what has really hurt the most is this syndrome has also effected my love life. And in the worst possible way.
I dated my ex for two years and I’ve never had someone care for me the way she did. It didn’t matter what it was she did anything and everything for me. I had never had that before.
But the stronger these symptoms got the more I drove myself away from her. I’m not sure why exactly, as she always made me feel better and supported me, but when you’re going through things that you nor your doctor can explain it becomes a bit of a distraction.
Anyways, I focused on my health and completely threw her aside. And I realize at this point it was the worst thing I ever did. She just wanted to help, and I was so fogged up in my mind that I ignored it and selfishly ran away.
Of all the things that have happened through this, that’s the one thing I wish I could take back. I’d go back in time knowing what I know now and I’d appreciate her. And I’d welcome her in helping me through these trying times.
And I’ve learned pride sure is an m-fer. And asking for help isn’t such a big deal especially from loved ones. Sometimes you need it. Just be sure you appreciate and remember where it comes from.
Having said all that the search for a diagnosis still continues even though it’s likely POTS. And once it’s fully known what I’m dealing with it’ll be easier to control it.
At the moment I’m doing my best to stay hydrated and take in plenty of salt, which is a POTS syndrome recommendation. I try to be as active as I can but I’m still adjusting to the level of exhaustion that follows. I also have to eat small meals every two hours to keep my blood flowing smoother.
The hardest thing to hear about this syndrome is there is no cure. And doctors don’t really have a full understanding of it. Could have been brought on by a serious illness or injury, or could have been brought on by severe levels of stress. In my case my guess is it was a plethora of things that formed together and left me with this crap load of symptoms.
Either way, my goal is to stay strong. And I will get back to normal regardless of how long it takes or how difficult it may be. And when I do, I’ll appreciate the things around me more and I’ll appreciate the things I’m able to do as a healthy adult. Such as working out and doing normal day activities.
I’ll spend more time with friends and focus more on the interactions instead of the heavy boozing.
I’ll write more and do my best to perfect my craft.
I’ll spend time with family and learn to appreciate their company as it won’t last forever.
I’ll be more health conscious and make sure I stick to a healthy diet this time. And for good.
And most important, I’ll appreciate those around me regardless if they’re friends, family, co-workers or a girl friend. I’ve even opened my eyes to marriage and children which I’ve never thought I’d ever want. But people change and sometimes it takes trying times to do it.
Also know I’m not writing this for anyone to feel sorry for me. At the end of the day, if it is POTS, the syndrome isn’t life threatening. It’s just extremely terrifying and misunderstood even by doctors.
But know I will come out on top. And I will be healthy again. It doesn’t matter how long it takes, I will beat this and I will be a better man after.