If You Were Here

Music has a way of invoking feelings and memories. Whether we want them to or not.

Whenever I hear, “If You Were Here” by the Thompson Twins, I get a warm feeling of nostalgia and romance. I always think of the final scene from “Sixteen Candles” when Samantha and Jake are sitting on a table, across from each other, a cake (with sixteen candles burning) between them. So sweet!

One of the few songs of my youth that brings pure joy. I had never purchased the soundtrack but often heard it on the radio. Because it was such a happy feeling, I added the song to my playlist. I wanted to listen to it when I stretched before bed. I wanted to end the day on a high note, no matter what had actually happened previously. I listened every night, starting my stretching routine with this lovely song.

That is how I was able to pay attention to the lyrics.

if you were here
i could deceive you

For forty years I thought it was a love song. It was magical to me and completely changed my mood. No matter what I was feeling, if the song came on the radio, I was immediately transported to the John Hughes movie scene. The dorky girl, that everything bad happened to, eventually got the guy of her dreams. Fairy tale ending.

and if you were here
you would believe

The song is not sweet. It is not a happy ending. So now I have mixed feelings when I hear it. My heart wants to go to a place of bliss and innocence. It’s where it has gone for most of my life! But my brain tells me I’m wrong.

but would you suspect
my emotion wandering

As usual, I am struggling with who I am as well.

do not want a part of this anymore

When I was young, I used to describe myself as average. Average height, average weight, average looks. There was nothing special about me. But also, there was nothing horrible about me. Easily dismissed, easily overlooked. That bothered me as a kid (and quite honestly, as an adult as well), but the last few years I have tried to change this inner dialogue.

I am trying to see myself as a crystal lined geode. On the outside, they appear to be an ordinary rock. But their inner beauty is surprising. The average person would not pay attention to the rock, or even know that there could be something on the inside worth seeing. They would walk past without realizing (or even, perhaps, caring) that they are ignoring something exciting. That’s me. I’m starting to recognize that I am brilliant and attractive on the inside. But people need to get past the plain exterior.

Maybe I need to stop hiding what is on the inside. Maybe, if people can relate and be inspired, the inside will be what makes me special. Maybe, by opening up and exposing the issues, others will see it as something beautiful. The thing is, I don’t find it beautiful. And that could be the problem.

I believe that everyone has a purpose in this life. And I believe that I have one, as well. I’m just having a hard time doing it right now. I don’t mind encouraging others to dig deep. And I don’t mind sharing my struggles of digging deep myself. I’m ok with that. But the minefield of the medical field has been one that I have intentionally avoided.

I do not talk about my specific diagnoses because I want people to be able to connect. If I give a generic, “I have health problems,” you, the reader, can apply that to whatever health problem(s) you have. If I say I have had multiple disc surgeries, you might not understand that or feel that you can relate.

Some of my diagnoses influence how I see the world and relate, from ADHD to GAD.

Some of my diagnoses influence how I can physically interact with the world. From Macular Degeneration to Degenerative Disc Disease.

Some have medications to manage while others do not.

The latest journey with my doctors has been three new comorbid diagnoses. They are shaking my world and have caused an annoying twitch in my eye. It’s not that they are necessarily bad. Inconvenient? Yes. Annoying? Yes. Limiting? Yes. Fatal? No.

the rain water drips
through a crack in the ceiling

I went to see a Cardiologist.

and i'll have to spend
my time on repair

My doctor thinks I have POTS, but some of my symptoms revolve around the heart and how it is working. She wants to rule that out first. Sometimes you have to know what you don’t have wrong with you, in order to figure out what you do have wrong. I think that is reasonable.

The Cardiologist was irked. “I don’t know why doctors keep sending me POTS patients. It isn’t a heart condition.”

My gut reaction was to say, “I don’t know, dude. I just work here.” Instead, I just stared at him and shrugged.

I get mad at doctors sometimes (or, quite honestly, most of the time) when they waste my time. I’ve been to a lot of specialists who scratch their head and say that this isn’t their specialty. The nice ones wish me good luck as they usher me out. But, to be completely transparent, I would much prefer being told that they don’t know, to being told I’m crazy. Or wrong. About what is going inside of my body.

There are a lot of clear-cut answers to clear-cut problems. We all know if we don’t eat right, our bodies will eventually break. That’s a very childish way to explain it, but it’s true. Eat more broccoli, drink more water, get more exercise! Except, what if I do those things, and my body is still broken? How do I explain that?

I’m not going to pretend like I am a healthier person than everyone else in the world. Because that is absolutely not true! But I am a very simple eater. I have to be. My body revolts if I don’t.

I do eat meat because there are a lot of vegetables that my body doesn’t like and I absolutely must have protein. I can’t be vegetarian because beans are hard for my stomach to digest, and nuts are an absolute no. My favorite memory is when my last doctor made me talk to a dietician and they had a hard time recommending anything different. “Look, lady! I am eating better than you. I guarantee it!”

I haven’t always been a healthy eater. But I felt gross all the time. Tired and in pain. A lot of stomach and bathroom issues. As I removed foods from my diet, I slowly started feeling better. I also dropped some weight which felt amazing! I’m happy with what my dietary plan, my weight just doesn’t show it. More aerobic exercise would help, but that is a problem.

Whenever I work out, I feel more tired, not less. I also don’t sweat like a normal person, so I just overheat. I have to work out in front of a fan, in the air conditioning. And water will just go through me. Which seems normal, but it isn’t. My body won’t absorb the hydration. It literally goes through without helping the body in any way. I have to mix it with juice or Body Armor, but my body doesn’t react well to sugar. Lately, I’ve been drinking Smart Water, which doesn’t seem smart because it’s so expensive. But it helps, so I try to do it as much as I can.

After my last surgery, while recovering, someone did a little Google digging. They were trying to figure out what was going on with me. [Side note: It really is amazing what you can find on the internet. I have a hard time knowing what to ask and believe that anyone who can get the answers they need is extremely talented!]

One possible diagnosis led to another possible diagnosis which led to another. Three comorbid disorders.

That was actually a funny interaction.

Person - “Listen to this! This sounds like you!”

Me - “Maybe, but I’ve always been like this.”

Person - “Exactly!”

That conversation hit me hard. I can’t tell you how many times I was told that I was overreacting or exaggerating or just looking for attention. Yes, I do like attention. But I don’t want to be sick, I want to be normal. I want to be able to do normal things. Fun things. Like eat yummy food and go on walks to waterfalls.

Trying to process the fact that I might have these conditions was very difficult for me to grasp. It put me in a bit of a tailspin. I didn’t immediately hit rock bottom, but felt I was in a freefall. It was like the drain of a tub after a long bath. A bit of a ripple in the water as it was laid out for me. Everything I knew began to deteriorate as I processed the information. As I got closer to acceptance, but not yet there, there was loud and frequent anguish about the possibility. Just like my tub makes several, loud gurgles before the water is gone.

That was the next stage. Emptiness.

I spent an entire weekend feeling devoid of emotions. I would catch myself just staring off into space. Not able to think or acknowledge anything. I needed to document my symptoms. I needed to prepare for a visit to my PCM (primary care manager), but I didn’t have the focus I needed. I stared at an empty paper, my mind completely blank.

but just like the rain
i'll be always falling

It was brought to my attention that I may have imposter syndrome. I didn’t think it was possible because I really just felt I wasn’t that sick. Yes, I see the irony.

It turns out that people can experience imposter syndrome when diagnosing an illness. There is self-doubt and disbelief in the validity. Even when supported by the doctor. But what happens when I am the one who discovered the illness, not the doctor?

I’m not going to say that doctors are useless, because they absolutely are not. I will say, however, that some are better than others. I also wish that if they aren’t sure what is going on, that they would excuse themselves to go into a back room and google my symptoms. Or Bing. Maybe they should make a medical search engine? Maybe they already have one but most doctors are too arrogant to use it? I don’t know. But there are a lot of diseases and conditions and problems that are not showing up on routine bloodwork. Maybe we need doctors to admit that they haven’t heard of every single problem that exists in our modern world?

I don’t know. Just a thought.

After talking to my PCM, she believes my (full disclosure, it was my daughter’s) research to be founded.

huge sigh of relief

To be on the safe side, and to rule out any heart problems (some of my symptoms are connected to my heart), she sent me to a Cardiologist. Thus, my visit to the guy who was irked by my presence.

Just to be clear, every heart test I have done has come back with flying colors. Even the CT scan of my heart showed zero plaque. Zero! There is no stranger feeling than sitting in a specialist’s office, feeling like absolute crap, but having all tests pointing to a perfectly healthy human. Me. I am that “perfect” human who has a million vague issues.

Fun!

That is why I have imposter syndrome in reference to my issues. I am chronically in pain and chronically showing symptoms of sickness, yet I do not feel truly sick enough or I feel that that my symptoms are not legitimate. And in the past, doctors have dismissed me. As well as other important people. Like my parents. But that is a can of worms for another day.

Up until now, I have not wanted to go out to eat, for fear of being annoying to others. The people in my group, the waiter, or the chef. Rather than making a big deal about my food, I discreetly take my own food, whenever possible. But the problem, no matter how hard I try, is that it hasn’t been just the food. I will still (sometimes) get sick even when I make the food with no cross contamination. I don’t want the problem to be bigger than just food allergies. That is enough of a difficult social stigma. Having it be more than that would mean accepting and educating others (who want to know). That would be a double edged sword: relief that I’m not crazy/accepting that there is something wrong with me.

These feelings have led to self-isolation, delayed or inadequate care, and a reduced quality of life.

I am constantly comparing myself to others. Even though you are not supposed to do that. And I preach that to others. “Quit looking at what everyone else is doing and focus on what you are doing!” And to an extent, I do that. I don’t pay any attention to Instagram or Facebook. Ugh! Who can compare to that?

But I do compare myself to others who are sick. And see that I don’t measure up to that, either. It’s always fun to hear that I don’t look sick.

insert lackluster fanfare with a sad-sounding kazoo

I don’t know what I’m trying to achieve by writing this all out. Clarity? Acceptance? I’m not exactly sure. Maybe kinship? Maybe have someone else say that they understand? To find out that I’m not alone?

IS ANYONE OUT THERE WHO UNDERSTANDS??

Anyway, this is my journey. A very lonely one, if I’m honest. That’s why I’m writing it down and sending it out into the great void that is the internet. Maybe one person understands. Maybe one person “gets it.” That’s the most I can hope for at this moment.

only to rise and fall again

I put my noise cancelling headphones over my ears and press the button. Slowly, the noises that surround me fade into nothingness. I lay on my mat, restart the song, and close my eyes. The music immediately calms me. I shut down my brain, block out the words, and just let my heart be happy.