Toughen Up Butter Cup! Achalasia, you’re The Dinner Guest that Never Left.

Since I’ve decided to journal via my blog, my journey through the maze of; diagnosis of an illness and the crazy ride after diagnosis you take, I seem to have taken myself seriously and actually written each day this week. I know that people probably won’t see the words I write. I understand I write for the purpose of getting out what festers in my brain that is full of “what if’s” and “how did this happen?” But it is actually helpful. Why didn’t I do this years ago through teenage angst or mid-life crisis?!!! Oh, because there wasn’t an Internet much less an iPhone with a WordPress App. Also, my ADD wouldn’t have allowed me 5 minutes of concentration to form my thoughts and write them down.

How I ever trained horses for so many years and worked in the high stress film and television industry I’ll never know. I stood up for myself and was a woman respected in a male dominated world. They were my friends as well as co-workers. Maybe it’s because we’re all from ranching communities where hard work and long hours were normal. I say all this because I used to be tough, tough enough to stand up for myself as long as I was kind and fair.

This week of frustration at the medical community, the surgeon, the mixups and my resulting “poor me, don’t they know I can’t swallow that delicious looking chicken noodle soup?!!” I have witnessed on the news unbelievable shock and sadness at the gunning down of innocent people doing innocent things. I’ve read a young family member’s posts about what it feels like after having her colon removed. Her bright attitude saying it is hard but she knows things will be better. And (I know you’re not supposed to start a sentence with AND) I have to say that life and the struggles that come are what you make it. I have been so totally immersed within a self-pity that would rival any Hollywood A Lister who didn’t get the table she requested at the best restaurant in the city.

I’m currently at a crossroads. I’ve been absolutely, concretely diagnosed with a swallowing disorder or rather, my esophagus is closed off at the bottom. I’m to have surgery but, by whom I don’t know because I was referred to a surgeon who’s specialty is GERD, therefore he thinks I have GERD and didn’t do the surgery. But did look in there and saw the problem and dilated it with a balloon and called it good. So I got upset, threw a tantrum in the presence of only my husband in between throwing up, and said “whaaaaaaa! What just happened?! I’m still sick! Do I go back to the doctors that diagnosed me and tell them, Hey I didn’t get that surgery you told me about but I did get some more endoscopies and a balloon!” Or, do I move on to a second opinion and hope whoever I find will look at my five endoscopic procedures and see the problem and get that surgery going?

Who knows what I’ll do. Because right now I’m thinking about people who struggle with things unimaginable. I’m an empathic person. I feel the pain of others in a way that I am not physically in the same pain but rather I hurt for them. I want them to be well, I want them to be happy. I don’t want to upset anyone, therefore I wouldn’t stand up to that surgeon during my first and only meeting with him when he was interrupting me. I wasn’t able to correctly communicate to him my symptoms because he’d interrupt me and say things like, “you mean your chest burns and you spit food up into your mouth?” No! My chest has never burned and I don’t “spit up,” I eat something then I begin to hurt horribly down between my breast bone, the pain gets intense, I end up throwing up. So, therefore where I was diagnosed with achalasia he didn’t agree, he was sure I felt burning in chest area and spit up acid. Leading to not getting the achalasia surgery. My inability to interrupt him back and tell him, “please give me a moment. No, what you are saying is not what I just said. I don’t doubt I have acid somewhere but, my problem is severe pain at BOTTOM of esophagus where it meets my stomach from the food or liquid trying to move through. It is getting worse. I feel like an elephant is sitting, not on my chest but right here, between my breast bone. I don’t have heartburn. I have taken heartburn’ medicine in case that was the problem and it made no difference. There is something that is mechanically wrong in this area, the area your colleagues identified as the bottom of my esophagus.” I didn’t get to say that to him. Because I didn’t want him to get mad at me. I didn’t want to “take up his precious time because good doctors like him are very busy and very important. Why that’s why I had to wait so long for this appointment! He’s the boss and I need to listen to him” Now how sick is that behavior?!

In retrospect I recognized that my inability to view my situation as it truly was, an important consultation to iron out all the things that must be done before surgery. To meet the surgeon I’d been matched up with. This was an important appointment, one that would set out, before me, the procedures and surgery that will ultimately give me back an important part of my life, my ability to eat and drink and not be in constant pain. But instead, I walked out of an office in the big city feeling like I’d just lost my momentum and hope. I went to the store, bought some heartburn medicine and went home. Sadly the medicine did nothing for my attacks.

What would follow is months of miscommunications, frustration, and me feeling like I’d never get this fixed because a surgeon changed my diagnosis and set me lose.

I’m sure, had I stood up for myself and brought the consultation back to my Achalasia diagnosis and the POEM surgery I would probably have had the surgery, maybe not. But I must take responsibility for my part in all this. I’m a sick, people pleasing, shy, woman who people don’t take seriously because I can’t say what I feel. What I feel is, I didn’t need numerous, repeated endoscopies within months of each other. I feel I was matched with a surgeon that does hundreds of endoscopies and surgeries, and doesn’t take the time to discuss before or after what he’s doing. I feel like a nice little market steer at the cattle auction, gate opens, I run in and around while the auctioneer hollers my worth, the gate opens back up and I’m ushered out to make room for the next cow.

And this is where I’ll leave this post, in quiet contemplation of my Achalasia, thinking about how my young friend is handling her illness with such grace and hope and thinking about how small me having Achalasia is in a world gone mad. Telling myself it’s time to stop beating up surgeons, doctors their clinics. It’s time to switch gears and discuss solutions instead of the self-pity I seem to love writing about.

I’ve completely forgot about how my Lupus affects me every day. This is good.

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