My Experience

A Terrifying Appointment

I’m writing this on Sunday but by the time this is up, the appointment I’m nervous about will have happened. This appointment is with an autonomic neurologist. It’s scary because I’ve had a couple neurologists tell me that my symptoms go far beyond POTs. This appointment is hopefully going to give me an answer about what is going on in my body. To be candid, what the neurologists fear is that I’m in pure autonomic failure. This diagnosis would not be shocking. It’s what I started to fear as my neurological deficits become more intense. It’s the confirmation that I fear. I’m already experiencing symptoms and naming them would create no real change. It’s still something I don’t want to hear. There are several outcomes this appointment might have. Until it happens, I’ll have no idea which avenue it’ll go down but here are my predictions. 

I’m assuming they’re going to order more testing. I was already supposed to have a repeat of autonomic testing. Having surgery and some insurance issues, I held off on having it done. I’ve already had autonomic testing done, it’s how I got diagnosed with POTs. They want to redo it, because of how much worse my symptoms have become. I’m not going to go into detail about what’s going on. In a lot of ways I’m back to where I started before I got diagnosed. The doctor who named my POTs was, to put it kindly, an asshole. He suggested that psychological trauma brought on my neurological symptoms. He told me if I got in shape, all my problems will be solved. Well, let’s just say that theory has been debunked. I got in great shape, running a couple miles daily. I started intense therapy, working through the fear that this illness has caused. What am I left with? A torn labrum and more neurological symptoms. Looking back, I understand his reasoning. I can see why he came to that conclusion but it doesn’t change the reality that I am in now. If this new doctor decides to repeat the testing, it will be another couple weeks before I have a real answer. This would be unfortunate. I wholeheartedly believe I can deal with whatever the diagnosis is. That doesn’t change how horrible the anticipation is. Waiting patiently has never been my strong suit. Waiting to hear if I’ll have these deficits for the rest of my life is painful. 

The second avenue is another opinion. This doctor is based out of a different hospital, he works closely with Mayo Clinic and he could send me down there. Again, this is more waiting but it would be active waiting. Mayo is very good about getting things done efficiently. I know some people would disagree but most of my appointments have been immediate. This might speak to the severity of my symptoms but I’m not going to ask. Frankly, I don’t want the answer. When I say this is active waiting, I mean that Mayo wants to be sure. They run a million tests because they have the ability to. I’d be busy and less focused on one single day of testing. It would probably be a week with at least ten different appointments. Of course, I could be wrong but I happen to know that mayo has an entire floor dedicated to autonomic testing. There’s a lot of information that could still be gathered. This may lead back to the same conclusion, which brings me to the third option.

I may end up with a new diagnosis. I’m not trying to be a debbie downer. It may be good answer. It could be full of hope and whimsy or despair. (There are a lot of other emotions that it could be but I tend to be black and white) Again, I know I can deal with whatever the answer may be. A diagnosis, even of something terrifying doesn’t always mean the doctors are right. I tend to be in the .00001% and that could work in my favor. I have a hard time admitting this but I’m scared. While I’m writing this, I’m trying to keep my hand from tremoring. I’m struggling to balance hope and fear. I’m a self proclaimed optimist, I’d like to believe that the world is bright and sunny. I truly believe that it is. There’s so much to be grateful for and that doesn’t change because of your circumstances. There is always something to be grateful for. Right now, I’m spending time fearing something I can’t change. That fear doesn’t serve me and yet it surrounds my mind. I’m working on being mindful. Shifting my focus to the present moment. 

All of these routes may be wrong. I can’t predict the future. I’m guessing, grasping at straws because it’s how I deal with uncertainty. This is linked to my OCD. I hyper focus on something that hasn’t happened and try to predict the outcome. It is my way of coping. Often, I’d talk this out with my mom but I know she’s stressed about this too. This fear and guessing doesn’t serve a purpose and yet if I allow it to be only in my head, I might explode. I need to talk things out, work through them by analyzing them out loud or in this case writing my thoughts out. I know this may be rambling to some of you but I feel a lot better now. I’m sure if you have a chronic illness yourself you know what this part feels like. The waiting and the unknown, it’s where we live and this moment is a heightened state of that. I’m not trying to make life sound scary. Life is and always will be such a hopeful and loving place. Even if we lose sight of that sometimes, it doesn’t change. I can hear my OCD therapist in my head telling me to sit in this feeling of unknown. I tend to override my emotions with happy ones. It’s easier to deal with, but then I don’t really process the ones I don’t like. They sit there and build, until one day, I explode. I’m posting this after the appointment has happened because I want to have an answer before I share my fear. This post is very vulnerable. Sharing it with you is something that I fear almost as much as the appointment itself. I’ll update you on the status of my health, once I’ve processed it. If you’ve made it to the end of this post, congrats! Thank you for reading and coming along this journey with me. 

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