You know something is taking over your thoughts, your days, your life when your iPhone automatically types out Achalasia when you type an “a” and a “c.”
My iPhone’s predictive text ability, something I wasn’t aware of until the word, “Achalasia” would pop up allowing me to simply hit my space bar to insert the word that was easy enough to remember how to spell but how nice not to have to type each letter out! Well not really because it meant that Achalasia was a word I typed a lot. Therefore predictive text took over. A great tip for iPhone users but a harsh reality for me that this word showed up in my texts, notes, emails, searches so much it became “predictive,” she is going to type that word again. That word is a medical condition that is rare? Experts stating 1 in 100,000 sufferers? I believe that but why do I always have to have the odd or special problems? I’m special, no doubt, but this special? This isn’t something I want to be special for.
January 22, 2018 marked a year since being told, conclusively, I have Achalasia. Yet, the procedure which was explained to me as the treatment to relieve this horrible condition, the surgery the hospital GI specialists told me I would have still hasn’t happened. It isn’t because I don’t have insurance or they found I didn’t really have Achalasia. I definitely do, I’ve had all the follow-up diagnostic tests to confirm. My problem swallowing has gotten worse if that’s even possible but it is. Why? Why haven’t I had a procedure, any procedure from POEM to Heller? Well it’s because of a crazy year of mix-ups, falling through cracks, the passing of my dear, sweet sister who just wanted me to get fixed and not suffer, my missed appointments because I already had three of those endoscopies, are you sure I’m to have another? My life and my questioning has delayed my ultimate goal. But through this year I’ve become anxious, I had so many negative experiences with doctors that I had just had it. I wanted to give up and try to live with Achalasia. But you can’t, at least I cant. It’s too painful and in July another EDG (endoscopy) which was to be another surgeon’s look to make SURE I have Achalasia ended up with a balloon dilation that didn’t help and a call from the nurse several weeks later informing me the lab results were back from biopsies taken and I now have Barrett’s Esophagus. This Barrett’s thing I’m frankly too tired to explain but I will say that seven months prior I didn’t have it. Could waiting so long, and putting off the surgery be causing me more problems that are serious enough to get it done already! I don’t know anymore.
To be fair, I’m at fault for canceling and bringing to a halt the follow up consultation with the surgeon who didn’t do a surgery to fix, but did repeat diagnostic endoscopies to look for himself. He was to be the surgeon who would do the Achalasia surgery but he didn’t have all the results from the previous EDG’s and EUS’s and barium swallows and CT scans, etc. So I was to learn that more procedures would be ordered so he would have the important information he needed to proceed.
However, my husband and I were about to experience his interrupting first consultation, leaving us feeling like we’d just experienced the ultimate “minimization of your symptoms. You’re not that sick and I know why” consult. It was a “no you’re not going to tell me what you are suffering from, I’m going to tell you and it’s going to be based upon questions I will ask and will answer too because what you are saying isn’t what I think you should be saying….. you aren’t throwing up, you have acid reflux. That extreme pain you’re feeling, the one when the liquid is trying to move through your esophagus but can’t and it feels just like your pancreatitis pain? That’s heart burn. ” By the way, after leaving I tried heart burn medication I purchased myself just in case that was it! But it wasn’t going to be that easy. That medication did nothing, absolutely nothing.
When I woke up from the EDG he did, I experienced another traumatic procedure and another rude, dismissal.
So the fact I have just had it with the medical establishment is an understatement. But I have to say, there is always hope. I’ve drawn on that hope, remembering the three different specialists in agreement and informing me that finally, they’ve all found what I was suffering from. It’s their consultations I cling to. I believe them, and I cancelled further visits with the surgeon and have decided to wait and see the original GI Specialists who give me hope. Even though one of them rushed into my hospital room after a week’s stay of pain and worry to tell my husband and I, “I looked at the EDG and yes, my colleague was right, Achalasia! I have to run, I’m picking my wife up at the airport and I better not be late or I’ll hear about it!” We looked at each other and fortunately his phone was charged enough to Google Achalasia so we would know what it is.
These doctors that found Achalasia need to see that I didn’t get that surgery. That I’m worse and quite frankly I’m afraid of doctors and hospitals because I’ve learned some hard lessons through all of this. That you can tell them your symptoms all you want but it just takes one doctor or nurse to doubt you and prolong your agony. But it takes just one doctor who sees you lying in a bed, wasting away, to take a moment to sit down and talk with you, not to you, but with you. Not rushed to speed through your symptoms, but to look you in the eye and you know they’re listening and not interrupting you. You relax and you finally tell your story, history, and your hopes. Having a doctor ask you, “what is the worst part of your sickness this visit? What do YOU think could be causing this?” Then they calmly go through a list of legitimate questions allowing me to answer and finally you hear it, the only thing you honestly want to hear, a true, sincere quest to help you, “well, we are going to do everything we can to identify what is causing this. Hopefully we will be able to and if we can’t I know of another specialty hospital that has more diagnostic tools we may refer you to.” Music to my ears, a feeling of relief like no other, instant tears of gratitude and sheer exhaustion once he leaves the room. I dropped my head down and sobbed, he heard me, he’s going to try and get to the bottom of this. Thank you Lord for this doctor.
This is the doctor I have an appointment to see. The specialist in a group of specialists that know their stuff and I trust. Saying I trust a doctor is a huge step forward for me. I honestly am afraid to go to a hospital now. I’m afraid of procedures. I’m just afraid of the very people who are trained to heal us. I’m not going through my entire story why, but it’s well founded fear and I now have an advocate with me at all appointments and hospital stays. I honestly could write a book about my experiences if I was a writer, but I’m not.
I have come a long way from my many years of health and active pursuits. Training, raising and competing with horses, working in film and television with animals to working for the judicial department in my state as a judicial assistant (law clerk, bailiff, judge’s assistant). To the year I became very sick and told I had to stay in the hospital for days. Since then I’ve been diagnosed with a lot of things, all wrong. But I don’t blame anyone, they did the best they could do with the tools they had and sent me on my way. From pancreatic cancer “possibility” from dark masses seen on a scan to a simple case of “gastritis” diagnosed once that mass disappeared. I’ve had my shares of highs and lows.
I just guess some of us must take the long way round to get to our destination. Others get there quicker, for whatever reason, it doesn’t matter and like I always say, it’s not so much the journey but rather the destination. If you arrive at your destination that hope and tenacity fueled you to, that’s the blessing. I’m almost there, and everything before this day will just be memories of the situations that taught me patience and made me grow as a hopeful, strong person who doesn’t feel people don’t want to help you, it’s all about the money, rather they do want to help you and by doing so they earn that money.
My story isn’t over yet, I’m sure there’s more ups and downs to come, but that’s called life and life is precious. I’m holding at hope, this Achalasia thing will someday be less of a concern of mine. I’m pretty sure about that.