Welcome!

Thank you for visiting! This website details my personal story with Achalasia and provides information about this rare disorder. I was motivated to create this site because I realized how lonely of a journey Achalasia can be. Because it is not a well-known nor common disease, suffering with it can be truly terrifying and isolating. It can take months and sometimes many years to finally get a diagnosis. Sufferers sometimes are accused by healthcare providers of having a mental health disorder and/or an eating disorder. I have heard of a number of fellow Achalasian sufferers who have been told their symptoms are all in their heads. I, myself, was misdiagnosed with GERD (Gastroesophageal Reflux Disease) for many months before finally getting a correct diagnosis.

My desire for this website is to–

1. Let others who are suffering from this disease know that they are not alone

2. Educate others about this disease so there is more awareness, understanding, and hopefully a move toward finding a cause and cure for it

3. Provide a site for mutual support and hope for all of us Achalasians, whether you may be currently suffering from many or only a few symptoms, as well as for your support networks of family and friends. While there currently may be no cure, we can fight together. We must hold onto hope and one another

In addition, I have created a discussion forum, We Speak Achalasian, with the intent of having a central location to discuss various matters relating to Achalasia. Please visit the forum, bookmark it for ease of access, and chat away! I look forward to speaking with you!

Hugs and Loves,

-Stacy

P.S. Remember to chew! 😉

*Disclaimer: I am not a doctor, nor am I a medical professional of any kind. The information herein has been retrieved from online resources and/or is part of my own personal experience. Please seek medical advice from a trained professional. I am not here to part medical advice of any kind and will not be held responsible for anyone who tries any techniques or therapies I have chosen to use for myself.

Creative Writing: Escape from Reality

As I alluded in my post yesterday, I thought I’d share some of my creative writing with you all. Writing helps me escape to different worlds, taking a break from whatever I may currently be facing, whether it is the physical variety–such as Achalasia or Osteoarthritis, or of the mental variety–anxiety and depression. Perhaps sharing my writing will give you a chance to escape too, even for a wee bit. The writing I will be sharing with you today is from September and January of 2016. So, here goes!

Prompt: Write a scene that begins: “It was the first time I killed a man.” January 8, 2016

It was the first time I killed a man, and frankly, he deserved it. I laughed, perhaps not without a tinge of hysteria, as I washed my hands, watching the blood sweep down the drain of the sink. Some had crusted around the cuticles of each finger, and I scrubbed at these. My hands shook slightly, from the cold of the water and the shock of what I had done.

I hadn’t planned it. But that doesn’t mean I hadn’t secretly entertained the idea, a small smile playing at my lips every time. Sometimes I dreamt about it at night, tossing and turning, my legs tangling in the bed sheets. Other times I dreamt of it in the full light of day, mindlessly stirring at a cup of coffee or while braiding my hair. Mostly I thought about it at the sight of his face. That god damn fucking smiling face that told me one thing, yet I knew better. See, he didn’t know that I had hired a private investigator. It’s not that I had become suspicious of him; rather, my family had. So, he didn’t know that I knew, but I did. I knew what a fucking liar he was. The truth was that he was a wife beater. A user. He didn’t care who he took down with him. He didn’t just use and steal from strangers. No, that was bad enough. He used me and stole my heart and sanity. And I’m pretty sure he had killed a man, or nearly so. Regardless, he was a drain on society, a leech. A parasite. And I was determined to not only permanently erase him from my life but do the entire world a favor by extinguishing him.

I reached to turn off the tap. Humming, I gave myself a good look in the mirror, and as I did so, I was reminded of the surprised look in his eyes as I took his life. I had made sure to do it nice and slow. There are no easy ways out. Especially when you’re a bastard. I laughed suddenly, feeling a lightness in my chest that I hadn’t in months. I swiped on a light pink lip gloss, and turning to my closet, picked out a light summer frock. Whistling, I left my apartment, full of happy anticipation for a new start. I pushed the elevator call button, and as the doors slowly slid open, I saw…

Prompt: Where would you be now if you had married your first love? January 8, 2016

I would be where I wouldn’t want to be. Population some 250,000. Not too small. Not too big. But not just right. A town where some leave but most stay and know nothing beyond its invisible walls. They seem content. But not me. I’ve got an itch. A deep itch. And it’s telling me it won’t be content until I go.

And if I stayed? Well, then. I’d be married to my high school love. First love for me. But I can’t speak for him. Tall, dark, and handsome. Dazzling smile. We met freshman year in high school U.S. History. I didn’t learn much about the history of our country. I was too busy passing notes folded up into those little football triangles. The ones where you stick the corner of the paper into a little pocket, snug. His handwriting was small, cramped. But neat and predictable. I knew he would always write a reply, flash a smile. Faithful, really. Well, faithful with the pen, anyway. I saved every carefully folded football letter in a Nike shoe box I safely concealed in my bedroom. When I’d get lonely, desire another taste of him, I’d carefully unfold the notebook pages, smiling as I read.

Each day as the note passing continued back and forth I waited with eager anticipation for him to invite me to Homecoming. I knew without one shred of doubt that he would ask me, that he would be my boyfriend. Until I found out that he asked another girl, saw them holding hands in the hallway. Totally blindsided. Heart crushed. Whereas he kept us a secret within the quiet, sneaky passing of the notes, he publicly declared her his girlfriend. There was no explanation. No apology. The notes stopped as suddenly as they had started. And since that day I never allowed myself to be open and vulnerable. I grew up. Moved away. Perhaps a fresh start. From everything and nothing.

When I moved back after a fourteen year absence we somehow reconnected. He texted me, flirted with me, and I reciprocated. Our love notes to one another were the same; the only difference was that they were digital, a cold replacement for the pen, the tangible folded paper triangles that I could collect and place in a box. But there was no collecting of him, keeping of his heart. Cause things do not change. People fundamentally are the same. For I found out he was engaged. A year from marriage to another woman, two years from fatherhood. And I was still a fool. So, what would have happened if somehow I would have married him? I would have remained in Vancouver, been lied to and cheated on, possibly a single mom, chasing ghosts.

Prompt: Wouldn’t it be weird… September 6, 2016

Wouldn’t it be weird standing on your own food as you ate it? Or for that matter, standing in it? Imagine a warm bowl of potato soup. You’re holding a spoon the same size as you, struggling to scoop up a piece of potato as it floats by. Finally, you give up and bend over to lap up the warm broth with your tongue. Imagine a thick bowl of baked beans, so thick it’s almost like quicksand, sucking at your feet. Somehow you find the spoon from your potato soup, lying half submerged in the beans, and you grab hold tight with one hand while shoving a gooey, brown sugar-sweetened bean into your mouth with the other.

The beans morph into black-eyed peas. Is it your imagination or did they just wink at you? And in that wink, in that blink of an eye, the peas have transformed into a bowl of Jell-O. You hop, bounce and slide into a valley of whipped cream where a cherry the size of a dodge ball has become lodged. You take a healthy bite, ripping a large chunk out of its red flesh, setting the cherry free of its prison. You grab hold of its stem, and as the cherry careens haphazardly through the valley, you come to a monument of cheese. Hard cheese monoliths, crags of crumbled feta, pools of molten cheese perfect for dipping, and caverns of Swiss. You break off a hunk of Asiago from the monolith, shoving it into your mouth, followed by a hunk of feta. You find a cracker the size of your head and dunk it in the cheese lava. You nibble away furiously, as you start to feel your stomach roil. Staggering towards the Swiss cheese cave, you crawl through a hole into the dark interior. You feebly grab hold of the cheese wall, fingering away a piece of it. This too you put into your reluctant mouth. Your stomach churns. You lie down in that cheese cave and fall into a restless sleep. Someone is shaking you. You moan and slap away the hand. More shaking, more moaning. You crack open your eyes and are surprised by the bright light stabbing at your eyeballs. As your eyes adjust, you see concerned eyes peering into yours at the same time a sharp pain rips through your guts. “Are you okay? You were moaning and tossing and turning,” your mom says. “Yeah, Mom, I just had a wicked dream and my stomach hurts.” She offers to get you an Alka-Seltzer as you start to daydream about a huge slice of blackberry pie as big as your house.

Prompt: Tell the true story of a dramatic moment in your life, but weave in one secret and one lie. September 3, 2016.

*as you read this short story, I would like for you to try to determine what the secret and lie are, and share your ideas with me!*

The short flight from Seattle to Portland so far was uneventful and marked the last leg of my journey home from Tokyo. I met a couple of businessmen on the flight who routinely took this flight for business. As we flew over the Columbia River on our final approach to Portland International Airport, I craned my neck in an attempt to spot my parents’ house. There! There it is! I thought, as I took in its aerial view. “I’m almost home!” I whispered to myself, when all of a sudden the airplane sped up, rising sharply into the sky. The airplane began to shake violently as it continued its assent at an alarming rate. I gripped the armrests, my knuckles turning white, and stared wildly out the window at the shrinking river. At the same time, everything seemed to slow down, as in slow motion the passengers and I looked around at one another, our mouths slack in silent horror. So, this is how the end is going to come? I thought to myself. I’m going to die here, on this plane, in that river, in front of my parents’ house? This can’t be! And yet, as this realization came to me, I felt a sense of peace wash over me while at the same time, I apologized to my family for what they were going to have to deal with…the loss of their daughter, granddaughter, sister, cousin, niece…And then…I wasn’t afraid of dying. But I was afraid for those I’d leave behind. Abruptly the nose of the airplane tilted down. We began to quickly lose altitude. And suddenly and unbelievably, we were making a hasty landing…at the airport.

I continued to clutch the armrests as our airplane taxied to the gate, trying but failing to wrap my mind around what had just happened. The businessmen repeatedly insisted out loud that this had never happened before. “It’s not normal! What the hell just happened?” But they were drunk, so I didn’t pay them much mind. Once we arrived at the terminal, the pilot, uttering not one word, staggered out of the cockpit and slumped into an empty first class seat. As we filed past him to get off the airplane, I noticed a haunted look pasted on his face, his eyes wide and unblinking. A passenger asked him, “What the hell was that?” And the pilot simply responded, “The other plane in front of us…” Was it a near mid-air collision? I don’t know, but that’s all I could surmise as I walked off that plane, the feeling of a ghost trailing after me.

Starting Over Again

The last time I wrote it was December and I was still living in Kentucky, desperate to get out. Kentucky was never a good fit for me, as I wrote, and so within a year or so of moving there, I was already on the hunt for a job elsewhere. However, my niche as a library manager/director is small and specialized, so it took time. But finally in May of this year I landed a position with a public library system in the suburbs of Philadelphia and made the 900 mile move, which was a lot easier of a feat than the some 2,300 mile trek I made from Washington State to Kentucky in the summer of 2015.

People have asked me how I am fairing in Pennsylvania compared to Kentucky, and I have to say a thousand times over that I’m much, much better! Things here are a lot less crowded and hectic, the pace of life is definitely slower, and overall the culture fits me much better. Pennsylvania is very beautiful with lots of forests and nature, which speaks to my soul. And I like my job much better. I am slowly making friends and learning about the PA (Pee-ay) culture. Overall, if things continue to go well, I could see myself staying here long term. This is such a huge sigh of relief for me; really the move has saved me, which I especially realize if I reread my journal entries from the time. For example, I wrote this back in December, the same month I wrote my previous post about how much I hated Kentucky:

For me, a woman now entering her 40s, loneliness has been a life-long companion that has walked with me hand-in-hand through all seasons of life and in various forms. Underlying it all has been a steady current of sadness. If I had one word to describe myself, it would be sad. I’ve become a fairly good expert at hiding it, however. I mean, I’ve had my whole damn life. I better be an expert at this point! What makes me lonely and sad? I would say there are three main causes:

1. Anxiety and depression
2. Inability to trust others
3. Chronic illnesses

All three twine together to form a nice, big package of Loneliness. As I’m writing this I feel wholly unworthy and keep asking myself, “Who cares? Who are you to be writing this?” And yet I’m hoping it will be cathartic to me and can help someone else.

I’ve never quite fit in. I’ve never been one for groups of friends, for being care free. I will never be easygoing, easy to understand, easy to fit into anyone’s life. I am weird, I am neurotic, and I am often stuck inside my own head. I am vulnerable and I wear my heart on my sleeve. People pick up on this and take advantage of me or entirely steer clear. Anxiety and depression rule my world; and if I had one thing to change, it would be that I would not have a mental illness. Anxiety defines how I interact with others and the world around me. I am sensitive and reactive to the world around me and it makes me anxious, stressed-out, nervous, depressed, and feeling hopeless. For me and the world. I wear it all on my shoulders. So, I purposely choose to opt out of life, largely, because it’s too disappointing and hurts too much. I am careful about who I let in my small, carefully constructed world. And I’ve learned this over time from bitter disappointments. People can’t be trusted. And yet I want so badly to trust someone. Anyone.

I’m tired of the mundanity of life, of going through the motions. My world has become smaller and lonelier as I continue to opt out. I have minimized grocery shopping to one day a month. I even plan on ordering online for curb side pick-up. When I do have to go shopping I’ll go on a Sunday morning when most people are in church. Otherwise I do all of my shopping online. I no longer go to the pet store; I order online instead through Chewy. I also do most of my personal shopping online at Amazon. Have them deliver it to me. I struggle with traffic, bright lights, lots of noise, and crowds. I often am close to a panic attack when I go to stores and am stuck in traffic. So I’ve constructed my life more narrowly and deliberately, behind the computer screen where I can control it. That’s not to say I don’t want to interact with people. I do. I so much want to. But I’ve got to control it somehow as not to go completely insane. And so I hide behind my devices. I socialize through Facebook and Twitter. And yet I’m still left wanting because I’m often greeted by crickets. My “normal” friends and peers have constructed meaningful lives and relationships in the real world. And I’m stuck here where I can’t interact or touch anybody in the physical world.

My life also consists largely of a fantasy world. I dream of my fantasy partner. I will pick someone I admire and pretend they are my partner. I imagine how I want my life to be and live it in my head. I see vivid images, full of life and color, and that’s where I long to be. That’s how I want my life in the real world to be, but alas I can’t have it, don’t know how to have it. So I’m left frustrated and yearning. In my imaginary world I am happy and desired. I am wanted and people want to know me and to spend time with me. I am loved. And not lonely at all.

That’s not to say I don’t have any real-life friendships. I do. I currently have one best friend with whom I’m rooming. It works out splendidly because we’re both introverts and largely read, watch Netflix, and play games on our devices. We talk some. But not much. But enough. Honestly, I know it’s not enough for her. For me, mostly it’s enough. Except for when it’s not. I know I’m missing out on a lot.

Yes, I’ve tried cognitive behavior therapy and meds. I don’t have the stick-to-itiveness to stay with CBT, and of all the meds I’ve tried the one that worked the best made me flatlined. I guess I decided I’d rather experience the depths of despair and the rare instances of euphoria over not feeling anything at all. The last therapist I went to didn’t really provide me with any solutions or helpful tools. She just suggested I opt out of everything that made me uncomfortable. Which I have been doing. But I don’t think she realized just how small my world would become. How is that a solution? I’m over here pretending to everyone that I’m okay when I’m really not. And so now I’ve even quit therapy. What’s the fucking point? I’ve seen numerous people and no one can help me.

What I really want is at least one friend to come knock on my door and ask me if I’m all right. But no one does. I wonder if it’s because they don’t know what to say? Or it’s too damn painful to be around me? Maybe I’m just a drag. I bring everyone down. Or perhaps they’re caught up in their own lives that there isn’t any time. I mean, I realize I am being selfish with this request. Oh I don’t know…is it too much to ask to be someone’s priority? Yeah, maybe.

I’ve also grown lonelier and my world has further shrunk due to chronic illnesses. Not only do I suffer from anxiety and depression, but I also have Achalasia and Osteoarthritis, which has riddled nearly all of my joints. Part of my self-therapy for mental illness and loneliness was hiking and dancing. I find I am able to reset my mind and body through spending time in nature and I can express my feelings through dance. However, I now have OA in my knees, hips, neck and shoulders. I am in pain all of the time so I’ve opted out of two of my favorite activities. I find myself growing round, soft, and further depressed sitting at home, retreating from people and the activities that brought meaning and joy to my life. And this makes me feel sadder, uglier, undesirable, and hopeless. Opt out. Opt out. Opt out. Lonely as fuck.

Chronic illness has also made people disappear. When I first became ill with Achalasia in 2013 one of the first symptoms was utter, debilitating fatigue. Most days I was barely able to drag myself to work. Needless to say, I routinely turned down friends’ offers to go do things. I turned them down enough that they quit asking, even though they knew I was very ill and I wasn’t merely trying to be difficult. Again, no one came around of their own volition to stop by and see how I was doing. I honestly think people just don’t know what to say or do? “You needn’t say anything!” is what I wanted to shout to my friends. “Just come be here,” you know? “Stop by, let’s have a cup of tea. Sit in silence. I don’t care. Just show me you fucking care.” Alas, that never happened. And of course I didn’t know how to ask.

I have an extremely hard time trusting people. I feel I’ve been let down the most and consistently by my family and friends. My friends drop off when things get rough. Maybe few of the people I considered friends were ever friends? Maybe they are having rough goes at life too and maybe I should stop living so internally to check in with them? Maybe I’m just as guilty and what I accuse my friends of? You know, life is really hard. Maybe we’re all just trying to survive. All I know is that my disappointment in people has made me largely opt out of people. Which sucks because like I’ve said, I really, really want those connections.

I’ve been hurt by people I’ve dated too many times to count. I’ve opted out of that too. No more dating! (But I want to). I want that close relationship so much! I’ve also opted out of having kids. I will not have biological children. I will not pass on my shitty genes to them. I’ve thought about adopting. But I’m in crummy shape-both mentally and physically, and far from home where I could have some type of support system that I’m opting out of that too. As you can see, I’m left with very little. And I’m fucking lonely and miserable. I think I’m really just a coward.

I don’t know how to reconcile all of these conflicting emotions and desires. I have no idea how I can have what I want when my defense is to opt out. I’ve been hurt too much. I just don’t think I can do this anymore. And yet I’m trying in some small, tiny, almost microscopic way. If not, I wouldn’t be writing this. In the end, if I can’t help myself, maybe I can help someone else. I would like to stop by and ask, “How are you doing?” And if you don’t feel like talking, that’s okay. We can just sit there in companionable silence sipping a cup of soul-warming tea. And maybe that will be the start to the break in loneliness. Maybe it will be a signal that it’s time to start opting in.

So, that is where I was only about six months ago. I can’t say I won’t always struggle with these issues, because like I wrote, they’ve been life-long companions to one degree or another. But what I’ve learned is I can control my environment. And that’s why I knew it was so important to leave Kentucky. Here in Pennsylvania I can go grocery shopping and to Target because it’s quieter and there is less traffic and people to contend with. Traffic doesn’t frustrate me because there is less of it and the traffic signals are much better managed. I enjoy the people I work with and feel less frustrated with my current employer. Stress and loneliness and all those other negative feelings also exacerbate my physical health. I was struggling with arthritis in my neck and resulting cervical radiculopathy in my right arm and severe headaches. For now I’ve got that largely under control with only some minor flare-ups. My Achalasia remains largely under remission though my digestive system will always be sensitive and require careful management. So, this is where I am at.

I am trying to get back into creative writing and art for my own mental health and happiness, which will also help with my physical illnesses. I did finish writing a novel in 2015 and submitted it to some literary agencies without success. I’m tabling that project for now but am constantly thinking about other plots to put pen and paper to. I journal for my own sake. Previous writing projects include rewriting song lyrics, like Weird Al, and responding to creative writing prompts. So, like I wrote before, it’s important for us to have worthy distractions and to continue to strive to find meaning and joy despite all that life throws at us. I’m on an upswing, I am happy to report! That all being said now, how would you all feel about me posting some of my writing pieces here? Maybe you’ll find some joy or something to snort at, giving you a moment away from reality, if you need it. J

Take care, everyone! Hugs, high fives, and back slaps.

Everything but Achalasia

Dear friends,

It’s been over a year since I last wrote. I’m not sure I have any readers left, but if so, here’s a new post for you.

I haven’t been writing because my Achalasia symptoms have been largely under control. Instead, I’ve been battling other enemies of the mental and physical variety. I’ve been struggling since moving to Kentucky. Kentucky is not home and will never be home. This may sound defeatist, but it’s my most honest assessment.

In a nutshell, here are some of the largest battles I’ve faced since moving here:

Allergies have kept me largely indoors. I developed allergies while living in Los Angeles and I thought they would get better when I moved back to the Pacific Northwest, but they didn’t. When I decided a few years ago to move to Kentucky for a career opportunity, my doctor was hopeful that my allergies would get better here. We had no idea that this area of the country is known for its high allergens. So alas, I went from bad to worse. For the first couple of years I was always having horrible sinus aches and sinus infections. Things have gotten slightly better since this fall, so I am grateful for that. I still can’t really go hiking though, but I do get outside occasionally for walks in the park with my dogs.

My living situations have been way less than ideal. I’ve never had such a difficult time with neighbors until I moved here! I don’t know what the hell is going on but I’ve struck out when it comes to neighbors. For example, the first year I lived right next to a drug house with constant drug runs, loud music, gunfire, and domestic arguments and violence. After that I bought a townhouse in a better neighborhood but the neighbor I shared a wall with were tenants who had two loud beagles that bayed and barked constantly. They were high strung and ill adjusted because the neighbor wouldn’t let them outside, even to go to the bathroom. One can only imagine what the state of the house was! On top of that, one morning I woke up to find a mushroom growing in my bathroom. I had the plumber come in and after hours of searching and ripping out dry wall and finding tons of mold, his conclusion was that the leak was coming from the neighbor, and had been going on for some time, months in fact. When we talked to the tenant she wouldn’t give us her landlord’s number and said she’d call him herself. The Homeowners Association president and I tried to locate a current number for the landlord, to no avail. I found her address though, and made a visit in person but the door went unanswered. I left a note followed up by a certified letter, and was met with crickets. The HOA president sent a letter too. Still no answer. We hired a lawyer and he sent a threatening letter. Nothing. So then we filed to go to court and the night before we were to go to trial the landlord showed up on my step wanting access to my property to see what was going on. I refused and told him I’d see him in court the next day. I’m going to spare you further details, but let’s just say the process dragged on for months but we finally won. I moved out of my place for about a week while my bathroom was gutted and repaired. The situation was much worse on the neighbor’s side, which was covered in insidious black mold. We both had to get a mold mitigation team in to clean out the mold before rebuilding. It seems the problem on my neighbor’s side went beyond the leak and mold. In fact, the tenant had totally trashed the place; everyone who had gone in there said that they had been living in utter squalor between the mold, the dog pee and poop, etc., that it wasn’t fit for living. The landlord evicted the neighbor, and for the remaining months I owned the place, I finally lived in peace. But my nerves were all shot to hell. On top of the neighbor problem, I had a foundation leak in the finished basement, the roof was leaking, I had an acrobat ant problem, and the garage foundation was also leaking. The HVAC was going and the windows and patio door were leaking. I had everything fixed but I couldn’t afford for the HVAC to go and on top of feeling eternally awful about my place (the neighbor really ruined it for me, and I’d never want to live in a townhouse again) that I decided to sell. Although I had only lived there for little more than a year the market was on a huge upswing so I sold and made a profit. I didn’t feel up to renting again or trying to figure out where I could live safely and happily here, so I decided to give myself time. I put my stuff in storage and moved in with a friend. I help clean, cook, and pay half of her mortgage and HOA fee. I’m feeling more at peace but am more than ready (I’ve been ready for a long time) to move back to the Pacific Northwest or to Colorado. I’ve been looking for jobs there and have had some interviews, but nothing has come through yet. But I’m certain eventually it will.

Kentucky drivers are awful, and the traffic is outrageous for the size of the town, and it really stresses me out! I’ve lived in Los Angeles; Portland, OR; Seattle, and Tokyo, all much larger cities than where I’m at now, and I’ve never seen such a shitty traffic fest as I have here. The traffic signals are very long—about 3 minutes each, so you can be waiting 6 minutes or more to get through an intersection. People here drive aggressively—fast, tailgating, and blatantly running red lights seconds after they have turned. There are tons of rear-end accidents and many cars have severe bumper damage, or bumpers missing all together. Drivers do not stop for pedestrians, even inside of crosswalks, and don’t have their eyes peeled for bicyclists. I have found it to be absolutely infuriating and I am constantly angry anytime I have to drive somewhere. So, everyday I’m angry. It really sucks.

Kentucky has a fucking terrible problem with litter! There is litter everywhere! It’s like the sidewalks, gutters, lawns, what-have-you, are the city’s trashcans. It’s disgusting, unsanitary, and an eye sore. Litter isn’t confined to the city; unfortunately it is also out in nature on hiking trails, parks, lakes, and campsites. I absolutely don’t understand it and it makes me disgusted with people. This is the 2-fucking-thousands! Wake up and take care of your damn planet! (Can you tell this angers me? Like I’ve said, Kentucky has turned me into an angry person and I don’t like it). I’m also sad that there is a lack of mountains, gorges, rivers, and lakes so the hiking here isn’t great. But then again, they’d just be filled with litter, so oh well…

Above all, I’m lonely. All of my colleagues have families and are generally from this area or have lived here for a very long time. I work at a school and a lot of faculty and staff members’ children are students there, and everything is geared around families but I don’t have a family. I’m single and childless. I feel left out at work, like totally disregarded and forgotten because I work in a separate building from everyone else with just one other person. I work extended hours as well so I can’t attend school extracurricular events where I could become more a part of the school community. In my non-work time I have a few friends that I hang out with, including my roommate, but I still can’t help but feel that I haven’t found my tribe and I don’t fit in anywhere.

While my Achalasia symptoms have largely been under control, my osteoarthritis has not been. OA has affected many of my joints. (Out of curiosity, I’d be interested to know how many of my fellow Achalasia sufferers have OA). Not only do I have it in my knees, but in the past few years since moving to Kentucky, it has shown up in my shoulders, hips, hands, and now my neck. I’ve been suffering most recently from nerve pain and weakness in my right arm due to an osteoarthritic bone spur in my neck. I will be going in this week for a nerve root block. OA has further hindered my ability to enjoy activities that I love, including dancing. Combined with allergies, I am not able to do any of the physical things I like—camping, hiking, and dancing, and so I’ve been slowly growing soft and depressed, curled up at home on the sofa when I’m not at work. I have recently started water aerobics, so we will see how that goes. In January I plan on adding Pilates. I’m hoping these two activities will help strengthen my core and others muscles, allowing me to get back to dancing and hiking. Dancing and hiking are two ways in which I unwind and combat stress. Dance also allows me to express my feelings, whether it be joy, sadness, or anger.

So, while my Achalasia has calmed down some in the last year or so, I’ve been battling with other demons. I’m only 40 and I worry that as my OA progresses I won’t have any good years to look forward to. What will I be like in another 10 years, even? It would be one thing if I were in my 60s or 70s with OA but struggling with it at such a young age has been really devastating.

With everything that I’ve been through and my unhappiness here in Kentucky and lack of ability to do the physical activities I love, I’ve found myself anxious and depressed. My world is shrinking and I’m lonely and am feeling unwanted and unneeded.

Well, enough of my whinging. I hope I have better things to share with you in the next post. Here are some things I am hoping and trying for:

1. To move back to the Pacific Northwest or Colorado
2. To become healthier, both mentally and physically
3. To continue to keep my Achalasia under control
4. To start to consider dating again (I’m really on the fence about this one). Notice I didn’t say start dating but that I might *start to consider* starting to date again
5. Increase time spent on creative writing
6. Begin drawing lessons again; also to find a digital illustration class
7. Get novel in front of beta readers
8. Contribute to a podcast (I hope! This is in the works, I think…)

I’m going to sign off now. I wish all of my Achalasia warrior friends well, and here’s to a Merry Christmas, Happy Hanukkah (Chag Urim Sameach!), Happy Kwanzaa, and a Happy New Year (if I don’t write again before then).

Be well!

Keep Going

I fear I’ve let you all down. I can’t even remember the last time I blogged. Can you? Let me see….Oh yes, it was last December, or 8 months ago.

Where have I been? What has happened? If only you could guess! But I won’t leave it up to you to guess, because that’s where things would get messy. 😉

As of my last post, I was about halfway through my first year as a librarian at a private school here in Lexington, KY. Why keep the name private? Because I need a little bit of privacy in this public world. Not only have I finished my first year, I have, as of three weeks ago, entered my second year. Here are some highlights since I’ve last blogged:

1. I broke up with my last boyfriend in January. It was him, not me 😉
2. I bought my first home! 😀
3. In June I started dating my real estate agent :-O
4. Instead of taking the 8 weeks off during the summer between school years, I decided to work at a nature preserve instead 🙂
5. I have new pet birds, which I’m quite enjoying
6. I am still alive 😀

I’m still getting food down, but I have spasms every once in a while, including the feeling of a trapped butterfly in my sternum, and I regularly have gas bloat and weird sensations in my throat. I regurgitate and burp regularly. The other day I ate negimaki (green onions wrapped in a thin piece of beef), and an onion got lodged in my throat. That was scary. I pushed it down with some water. I still take a long time to finish eating and am still eating long after others have finished. I rarely finish a plate of food. The upside to this is that usually one meal becomes two. Leftovers! It greatly helps the budget too…. (Sad, but true). It’s kind of a double edged sword, really. I can’t eat enough to get the energy I need, so I’m tired. But then when I do eat properly, I’m still tired cause of the energy it takes to get the food to go where it needs to go. And on top of that, there is the gas bloat, and well, yeah, it’s all just taxing. But I’m really good at hiding it, and in a way, I’ve become somewhat used to it…unless a flare up is really bad.

These days, along with my allergies, swallowing has become more of a challenge because on top of it all, I have phlegm stuck in the back of my throat. And my throat feels constantly raw, dry, and sore. I’m not sure if it’s allergies, a throat infection, or my asthma inhaler causing the throat issues, or if it’s all of them combined. And does Achalasia play a role? I don’t know. I’ve given up feeling “normal.” What’s normal, anyway? I wouldn’t know.

I’ve realized after writing this what a gross post this is overall. Hahaha. If you have Achalasia though, you know that talking about this stuff never really is gross anymore; we all deal with it.

Overall, though, I think I’m doing pretty well, especially considering all of the changes and the schedule I’ve kept up over the past 12-14 months. So, I’m not going to complain. I think though that it is time for a visit to the doctor to check on my vitamin levels. And I wonder when I might actually give myself a proper break. I tell myself now that I plan to take next summer off, but then I do tend to get restless, so I promise nothing. Keep going, keep going, keep going. Maybe I need a tattoo of that. Or a bumper sticker. Keep moving or quit. Maybe that’s it. Maybe I’m afraid if I quit going, quit moving, I’ll just quit all together.

Keep going. Keep going. Keep going.

4 Months, 1 Old Disease and 1 New, 11 New Friends and 1 New Man

This if the first post I’ve written since August. I can’t believe how quickly time has passed and now I’m here, sitting in front of the computer for the first time in months, writing my final blog post of the year. 2015 has gone by so quickly! It blows my mind to think I’ve been through an entire calendar year from start to finish (and then some!) since having my Heller Myotomy and Dor Fundoplication surgeries in September of 2014. So much has happened, and I won’t bore you with the minute details, but I’d like to get you all up to speed since my last post.

Should I start with the bad or the good? Or perhaps it’s not possible to separate them out, and I should just attack them as they come… Sound good? Here goes.

At the time of my last post I had just moved across country to Lexington, Kentucky, for a librarian position I landed at a private school. I was concerned about my Achalasia and how I’d handle all the new changes and having to navigate a new medical system. However, while I focused on one monster, another, completely unexpected, reared its ugly head. What is this monster? Allergies! Before leaving Portland, my ENT doctor had said, “Perhaps you’ll be moving to a location with less allergens and you won’t have to worry.” What a big fat laugh! I traded a place with high allergens with another with the highest allergens! Apparently this past year Louisville, Kentucky rated the highest in the nation for allergens, followed by Tennessee. And guess f*cking what? We’re smack dab in the middle, making a glorious mother effin’ triangle! It looks something like a slice of pepperoni pizza, or this:

It only took a few weeks, at best, upon my arrival in Kentucky to know I was screwed. I had constant sinus congestion and pain, and chronic headaches. Finally in October I went to an allergy specialist and had allergy and breathing tests done. The results were positive for allergies to trees, grasses, mildew and mold, cats, rabbits, and gerbils, even. I also tested positive for asthma. I was instructed to continue taking an oral antihistamine along with a nasal antihistamine spray and to use an inhaler. I was told to return for a follow up visit in December, but was also told in all likelihood that I would need allergy shots. Between October and December I had several sinus infections, the most severe being in December when we were preparing at work for new flooring. The building I work in has been the victim of previous flooding and recent roof leaks. Some books have visible mold and mildew on them. It’s the same with some storage cabinets in the basement. Who knew what was under the carpet? I was too scared to ask. The last week of work saw us boxing up books in order to move shelves out of the way for the new floors. It also saw a work crew come in to rip up the carpet. Guess what was floating in the air all the while? No surprise I spent the first week of winter vacation very ill. I returned to the allergist and she gave me a steroid shot for inflammation and wheezing. I also went on another round of antibiotics and was given an additional prescription for a nasal steroid. It’s obvious to me that I can’t continue on this path. I know I will have to get the allergy shots; they will save me money and my health in the long run. But for now, with my current insurance plan I can’t afford them.

On top of all these wonderful allergies and resulting sinus infections, I’ve been dealing with Achalasia, per the ushe.  Since my surgery I haven’t had much sternum pain except for the occasional acute stabbing pain, as if being jabbed at with a hot poker or a knife. My most common complaint is gas or air in my esophagus, stomach, and intestines. I’m not sure the exact cause, but I think it’s a combination of things. I think perhaps it is due to swallowing air when eating and drinking. I think it’s also due to the fundoplication not venting properly, as this “trapped air” or “trapped gas” issue seems to be a bigger problem now than it was before surgery. I also wonder if it has something to do with slow digestion. I am careful about the amount of fiber I eat, as large amounts of fiber seriously worsens/brings on these symptoms. Also, eating large amounts at a time I have found to be a huge no-no for me. I make sure, for the most part, to eat small portions. Ideally, I should also be eating more frequently (small portions frequently), but honestly, it’s not really feasible due to work.  Speaking of work, that’s another challenge. Being that I work at a school, lunch time is very short. I am lucky to have 20 minutes, if that. And you know how we Achalasics must eat slow, chewing each bite very deliberately. This means I end up taking my tray back to my office to continue eating while I work.

Over the holidays I had two attacks, which is not surprising, considering I was eating more and of a great variety. At Thanksgiving I had to excuse myself as I had sudden, intense pain. Again this happened a day following Christmas.

Between allergies and Achalasia, I am always sick and in pain. There is not one day where I feel okay. But what am I to do, curl up and give up? No! I’m a fighter; always have been, always will be. And now I feel I have a lot to live for and look forward to. For one, I met someone, completely unexpectedly, three weeks after moving to Kentucky. He is very supportive and understanding. Also, for the first time in seven years I have a career, and finally the one that I truly love. I’m a school librarian! I get to talk to kids about books and information, I get to help them locate information, and I help my colleagues with their technology and information needs as well. On top of that, I’m learning so much from the students and colleagues every day. I’m insatiable for knowledge and information, and this career meets my needs and passions. My boss is awesome and supportive, and we’ve developed a great relationship, both inside and outside of work. In fact, we went together, along with her husband and son, to see Star Wars over winter break. This is the first time in my adult life where I’m doing what I want to/what I’m meant to do and I’m not scraping for pennies. I have my own home, and I have my man. Bailey, my best furry companion of ten years, is by my side. I have a healthy and active social life with two core groups of friends…to the point where honestly, I can’t keep up. At times it makes me feel bad and I wonder what they may think about me. But I’ve learned to not feel bad about saying no and to understand and respect my limits…cause at the end of the day it’s my life and I’m responsible for it. I’ve got to take care of myself. I contribute and participate when and where I can. And that’s just got to be well enough for everyone, myself included.  Honestly, I couldn’t ask for more. I couldn’t have imagined before moving here that Kentucky would be so good to me. (Minus the allergies!) Okay, I could ask for my health, but I know I’ve got to be realistic. Unless there is a magic wand that erases Achalasia, I’m stuck with it for life, and it’s just something I have to deal with. I won’t lie and say I don’t sometimes feel sorry for myself. I may cry. I may get down. But it’s only momentary. I have a lot to look forward to, and as long as I have hope, I’ll keep fighting.

2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 3,100 times in 2015. If it were a cable car, it would take about 52 trips to carry that many people.

Click here to see the complete report.

A New Life: Rising to the Challenge

Moving is never fun. Moving with a chronic illness is the least fun.

Just a month ago I packed up all of my belongings, grabbed my dog , toads, and plants, and drove across country 2,400 miles to start a new life.

Our route from Washington State to Kentucky

There were a lot of unknowns: Would my health cooperate through the ordeal? Would I have a medical emergency? And if that were to happen, what would I do temporarily without insurance and without a doctor who understood my medical situation? How would I adjust mentally and physically to a new town and a new job? Would I physically be up to the challenge?

Of course, if I didn’t think the potential benefits outweighed the risks, I would have never made the move. If I didn’t think myself capable, I wouldn’t have done it. So, while I had all of these concerns and doubts, underlying it all, I knew I could do it. I would rise to the challenge. And rise I did.

We left early on a Tuesday morning, driving a 15 foot U-Haul and towing my car on an auto trailer. The trip would take us through ten states, climbing up steep mountain passes and flying back down, and across hundreds and thousands of miles of flat plains of corn and other crops. We would dodge deer and thunderstorms. But we could not dodge the sheet metal.

It happened in Wyoming. We were driving through a non-descript town bordered seemingly on all sides by industry. The large, curling piece of sheet metal lay in the middle of our lane. There was a choice to be made: Swerve and cause an accident or drive straight over it. We chose the latter option. We held our breath. White knuckles clenched the steering wheel. Bailey, my dog, and the toads, however, were unconcerned. Ignorance is bliss. We drove over the sheet metal and nothing happened. Sighs of relief were exhaled. Clenched hands on the steering wheel relaxed. A smile even showed itself upon the lips.

A pick-up truck pulled up alongside us. We turned and looked to find a lady gesturing erratically at our auto trailer. Peering out at the rear side mirrors we were greeted with billowing smoke rising up from the auto trailer tires. Dammit. We had blown the tires after all. My aunt, who had been driving, pulled over to the side of the highway, and I clambered out. The two left-side (driver’s side) tires on the auto trailer had been shredded down to the rims. F@ck!

I pulled out my cell phone and dialed U-Haul roadside assistance. I was informed someone would be out with two new tires in 60-90 minutes. There was nothing to do but wait, the furious pace we had set ourselves temporarily put on hold. While we waited I called the highway patrol to help guide us further off the shoulder of the road into the soft dirt covered with wild weeds. And then we sat. Bailey opened one eye to study me, but finding nothing of interest, went back to sleep.

90 minutes later two guys came and replaced the tires and we were back on the road. Aside from staying one night in a shady hotel in which drug deals were going down and the hotel restaurant flooded with sewage; and  being asked for drugs, either meth or pot, at a Denny’s where we ate late one night, the rest of the trip was uneventful.

We arrived at my new apartment in Lexington, KY on a Friday evening. The next morning a few friends came and helped unload the truck, which was done in a matter of less than a couple of hours.

It’s been about a month and I’ve unpacked what I can in my new place. I still have a wall of boxes of books which are waiting for new bookshelves. My place is very large; the largest I’ve ever had. It’s two bedrooms and about 1,100 square feet. It’s just me, Bailey, and the toads and we’re knocking around the place. On the upside I am using the large family room as a makeshift dance studio until I can get more furniture. On the downside I pad across the hardwood floors every night after turning out the light to double check that I’ve remembered to lock the front door. I always have. And yet.

I started my new and exciting position as a Middle School and Upper School Librarian at a private school about 10 days after arriving in Lexington, and it’s going splendidly. I really enjoy the school faculty and the students and have a lot to look forward to. I figure once the learning curve evens out I’ll gain back some of my energy.

I have to say I have pain sometimes, which I know will never go away; it’s just the nature of this nasty disease. I have chronic fatigue since moving here. I think it’s an accumulation of things: Achalasia and allergies; cross-country traveling and moving; starting a new job in which there is a lot to learn and to do; settling into a new city; meeting new people (new friends and all of the faculty & staff, parents, and students at the school); and setting up my new place. I’m hard on myself, wondering why I’m always so tired. I wake up in the morning tired. I spend the day exhausted. I run to bed as soon as it seems reasonable (9, 10 at night). On the weekends I sleep about 10-12 hours a night. And I’m still tired.

Other than the crushing fatigue, however, I feel my illness has not worsened through the ordeal. It’s remained constant and steady, an occasional flare-up here and there; but mostly there is this odd feeling that things just aren’t quite right but aren’t unmanageable nor unbearable. This is my life with Achalasia. And no matter what, whether there be ups or downs in my life, I will manage it. And if it ever gets to be too much, I will deal with it (like I did before with surgery) and rise back up. Every time I am knocked down, I will rise back up and fight. Every. Single. Time.

So Slow, So Fast

I apologize for not writing a post last month. My goal is to write every month, but last month nothing seemed to come to mind. I lacked inspiration. I’d rather write something of quality rather than just writing something because I have to. So if I miss a month here or there due to lack of inspiration, so be it.

I think it’s funny how things can go so slow to suddenly go so fast. That’s how my career trajectory has been since 2008. When I returned to Washington State in 2009 I started substitute teaching with three local school districts and continued my online adjunct writing consultant position with a university. By 2011 I had been accepted into University of Washington’s Master’s in Library and Information program. I began taking full-time coursework with them online. In addition, I started working at the local library part-time, which after about a year became full-time work. Needless to say, my plate was full.

With less than a year in my studies to go I started to get ill, and more than a year of tests and procedures, in pursuit of a diagnosis, began. In September 2014 I finally had a diagnosis and surgery. Subsequently I have been much better but nothing will ever be perfect. I have to continue to manage symptoms and I will be the first to say I’m not always the best at it, as I do have my vices, such as coffee.

It seems all of my hard work has paid off and the suffering has ebbed enough to allow me to finally pursue and obtain the career I’ve so desperately wanted.

Remember I said things seem to go so slow just to finally speed up, full sail ahead? Well, just the past couple of weeks I was contacted by at least four employers interested in interviewing me for school librarian positions. Last week saw me in Kentucky. I flew in Tuesday, had an all-day interview process with a private school in Lexington on Wednesday, and by Thursday I was back in Washington State. Before I even got home, the school had called me to offer me the position. The person in charge said she timed the phone call for when she thought I would be at the gate waiting for my flight back home. And indeed she did! By the time I set foot on Washington soil and saw my family, I had a job offer. At the same time I was in Kentucky I had another school in Denver calling and asking me for a second Skype interview but I had to decline as I was interviewing with the school in Kentucky. The gentlemen I spoke with laughed and said, “What are you trying to prove?” I told him I would be flying back to Washington on Thursday. He asked if I could do the interview then. I said I would be in the air, but I could on Friday; we scheduled a Skype interview for Friday morning. However, I ended up accepting the job offer in Kentucky, so I called Thursday night and left a message explaining that I had accepted another job offer and wouldn’t be able to interview with them after all. On top of that I had two elementary schools in Portland wishing to pursue my candidacy.

All of this may not sound extraordinary. But it is if you understand and know of what I’ve been through in recent years. I struggled to move up in the library district I had been working for for the past three years. I interviewed for at least 15 supervisor and professional librarian positions with my employer only to be told “no” every single time. I couldn’t get beyond the non-professional position I was in. It was absolutely maddening. I have to be honest and say I have come to dislike unions, although I realize that’s not the only factor that was making things difficult. Unions are designed to protect the employee but there is so much that they hinder. I am glad my new employer is not unionized. I also have come to feel some negativity towards public organizations, which is a shame because I really want to be there for the public…but the structure really makes it difficult. We lose sight of what’s important.

In addition to struggling to move up with my current employer, I wasn’t having any luck with outside employers either. I can no longer count how many applications I filled out and submitted. It’s in the hundreds. I absolutely felt like throwing in the towel. I even was communicating with a friend via email saying as such. Then bam! The past couple of weeks saw a complete 180. The next thing I knew I was emailing the same friend to tell her the good news.

I know this post doesn’t have a lot to do with Achalasia. But I guess the point is is that I am so thankful to finally be healthy enough to have the confidence to pursue another, better avenue, of employment. If I hadn’t received a diagnosis and had the surgery it would have been a completely different story. I am so grateful for so much.

It took forever. It went so slow. My career pursuits. My health. Then everything sped up and here I am today! I am looking forward to the future, for the first time in years. I will be moving the end of July and will start my new position the beginning of August. I will continue this blog and update it as often as I am inspired.

I wish you all happiness and prosperity and good health. Things are possible! They are definitely possible!

Worthy Distractions

About a month ago the gas bloat and indigestion I had been experiencing post-surgery hit a peak. The natural remedies I was using, including DGL licorice chews and food trigger avoidance, weren’t cutting it. Upon consultation my surgeon recommended I go back on the PPI, Omeprazole. It’s not what I wanted to hear and it’s not what I wanted to do—I felt it was a step backward—but I was miserable enough I was willing to give it a go. Back on the medicine I am much better now. I am grateful it is working but I worry I will have to be on it indefinitely, something I don’t relish. If I’m going to be completely honest here with myself and everyone else, I didn’t stick all of the time to the recommended dietary changes. I mean, I did them for a span of time here and there, but long-term for weeks and months on end, I just couldn’t do it. Call me weak willed or a yellow belly or what have you, but I also want to enjoy my life and having all of my vices stripped from me would leave little from which to draw pleasure. Okay, so I cut out coffee for weeks on end only to crawl on my knees back to it. The same goes for alcohol. I don’t drink alcohol every day, but I do enjoy beer and sometimes wine. They’re so tasty!! Coffee, however, I can’t live without, which is so funny considering I didn’t like it until six years ago; up until then I thought it smelled like poop. I have tried to find less acidic forms of coffee, coming to the realization that drinking French press coffee was really tearing me up. I have found I can manage drip, espresso, and cold brew. The issue is if I go off the PPI, I probably will have to cut out my vices again. And as is apparent, I am weak and incapable of sticking to the dietary modifications long term. I’m stuck between a rock and a hard place. Why am I such a ninny? I know what I need/should do, but I can’t. I don’t want to. You can’t make me. Okay, I’m going to pick myself up and quit pounding my fists and kicking my feet against the floor.

The point of this post isn’t for me to whine and complain. Okay, maybe it partly is because I’ve had a rough day and I just want to vent. Sometimes that’s okay, too, right? But the main thing I came here today to write about is distractions from our disease. Recently I have turned in earnest towards some things that I usually do to heal my soul and find peace with my human existence. While anxiety and stress do not cause Achalasia they can exacerbate its symptoms, so I am trying to do things to help combat this. What I find that helps me are writing, dancing, reading, escaping to nature, gardening, and drawing. A couple of months back I enrolled in an art class where I have been working on drawing techniques with charcoal. My first drawing was of a bald eagle, and to be sure I have no idea how in the hell I did it. I look at it and it blows my mind: “I did that?!” It’s the first serious drawing, outside of doodling, that I’ve done since elementary school. Currently I am working on a fox, which I have found even more challenging than the eagle. When I draw I enter another world. Time slows down, my breathing eases, and my entire body and mind unclench. I liken it to the same feeling I get when I enter a fantasy world while reading. I think the process of drawing, as any art form, is quite possibly more important than the finished product. And you know what? It is. Drawing is saving me.

This drawing of a bald eagle is the first I completed. Charcoal on paper.

So is dance. I’ve been dancing since I was able to stand and walk. Early photos from my youth show me dancing. In elementary school I enrolled in ballet classes and competitive gymnastics. On fair weather summer days I remember choreographing dance routines in my backyard to Janet Jackson with my cousin, Holli. We even performed for our families on occasion. As an adult I have continued to dance, albeit irregularly, which is a shame. I will dance at home to no audience aside from my dog. At times I go out to dance with friends; most recently we have gone on a bout of funk dancing to a well-known local funk band. When I dance all of my cares and concerns fade away—poof!—and all the people around me disappear into the ether until all that remains is the beat of the drums, the thrum of the bass, and the rhythm of my body. My soul becomes free of its bitter prison and I rise. People who have seen me dance have paid me various compliments, such as, “You’re a great dancer!”; “You’ve got music in your veins!”; “You’re our dancing queen!”; and “Dance heals your soul. I can see it!” I love all the compliments but nothing is sweeter than the reset and cleansing I feel from dancing itself.

In addition I have begun to write more again, not just for this Achalasia blog, but for fun and for emotional release. I enjoy free, creative writing on topics and ideas that pique my interest and allow me to explore my complex mind. Lately, I have been attempting something much more ambitious…something I have no idea if I am capable of. I’ve only told a few people about my current project because I just don’t know if I can do it. So far with this project I have found a lot of joy in creating a fictional world but have no idea if I can pull it all together. I’ve gone through the entire process of outlining and character and world building but have become paralyzed when it comes to doing more than that. I am so afraid of failure. This is something I’ve wanted to do since I was a child, and for once instead of just saying I can’t do it and leaving it at that, I’m actually trying. But I’m still so terrified. Somehow I need to get past this one last hurdle. But how? I don’t know. I don’t know. I am aware I am being vague about this writing project and it is on purpose. You aren’t going to get any more out of me, so let’s just leave it at that for now…or perhaps forever.

So, I’m curious, what are some things you guys do to try to distract yourself from Achalasia or to try to lessen anxiety and stress and to find peace?

SWF: The Realities of Dating with a Chronic Illness

Dating. Ugh. It’s difficult enough as it is but slap a chronic illness on top of that and the shit goes sideways. I’ve never been the flirty girl, the one that makes eye contact and gives a knowing smile. I’m not the girly-girl type and I won’t act unintelligent and tell a guy “what he wants to hear” in order to snag him. I’m pretty much “I am what I am” and I’m unapologetic about that. Needless to say, getting dates never came easy for me. And now that I have a chronic illness things are even more slanted. From recovering from a bad marriage and subsequent divorce and then falling ill, I have dated very, very little in the past two years.

There are many people like me, single and struggling with a chronic illness. We often labor to figure out how and when to break the news to dates. We also grapple with the idea that we are broken and question, how could we ask or expect anyone to want to be with us? It is true that we may not be able to physically give back as much as we receive, but I strongly believe that there are many other ways we can contribute. That being said, I think it’s very important to not let our chronic illnesses define us. We are people. People who have a chronic illness. We are not our diseases. We shouldn’t be apologetic about it either; we didn’t choose to have a disease. We have to be able to say, I cannot do such and such, but be clear about what we can do. I know it’s easier said than done. I’m still trying to get used to the “new” me since I fell ill about 1-1/2 to 2 years ago. So, now that we know we have things to still contribute and that our illnesses don’t define us, how do we go about tackling dating? I know. I know. First we must find the mental and physical strength, but once we do, then what? When do we tell the person about the illness? And how?

First scenario: You’re online dating and you decide to tell him then. Perhaps you don’t tell him during the first or even second message swap, but somewhere in there, the first week or so you decide to lay it out on the table. That way when he freaks out he can do so in private. It would make it less uncomfortable for him and less awkward for you. I don’t online date so this is not an option for me.

(Disclaimer: I realize I keep saying “he.” It’s just less clunky to write it that way. But feel free to change the pronoun as it fits your situation)

Second scenario: Perhaps it’s a blind date. Or he asked you out in the condiment section while you were scoping out the mustard. (Good thing you weren’t wearing your Hello Kitty fleece pajama bottoms.) Even better: He met you at the bookstore while you were thumbing through the Fantasy and Sci-Fi New Books section. Anyway, I digress. You’re on your first date. The usual ritual includes a meal and/or drinks, right? With Achalasia we know what a struggle it is to eat. Many of us avoid eating in public. So, what is the work around to this? One idea is just to avoid eating out on the first date. You could suggest another activity, such as a walk in the park, a trip to the local bookstore or coffee house, or a movie (although watching a movie doesn’t give you much of an opportunity to get to know the person). Another suggestion is finding a mutually desirable restaurant where you know there are things on the menu you can eat. You’ll also probably need to chug water to get the food down with frequent trips to the bathroom, right? Considering all this, my personal opinion is that it’s probably best to be upfront and tell the truth. You don’t have to go into all the gory details, like “I regurgitate every time I eat” ; “I vomit frequently after eating” ; or “I aspirate sometimes in my sleep.” Ladies, you could even go the funny route and say “I can’t swallow” or “I don’t swallow” as an ice breaker for the big news. I think the safe first step is just to explain what the disease is, using medical terminology. Make it as neutral as possible. This should give you some kind of indication as to how he feels about it. It’s also a good indicator as to his character. If you continue dating, he will witness your struggles over time. You can also divulge more information as time goes and you feel comfortable. This advice, about providing the information in a neutral and educational tone would work for any chronic illness, not just Achalasia.

That all being said, I have gone on a couple of dates since I’ve been ill. I told both individuals straight up what I was dealing with. I didn’t go into any of the gory details but gave them a medical definition of my disease. I may have also given them some general symptoms I deal with, such as chronic sternum pain and fatigue without going further into the more embarrassing details. Neither one of them ran away. Although a relationship didn’t development with either person, I strongly do not believe it was due to my illness. Both were empathetic and concerned. The first time I saw my friends following my operation we met up at a bar. Everyone ordered food and alcohol off the menu. I was still on a liquid diet, albeit no alcohol. The only thing on the menu I could find to eat was a root beer float. That was pretty exciting to me, having subsisted largely on pureed soup, yogurt, and cream of wheat up until that point. The guy I was interested in at the time (I thought he was interested in me too, but that’s another story) came and sat next to me. Pointing at the root beer float he exclaimed, “That *is awesome*!” For another date with the other guy a couple of months later I was invited over to his place. When I arrived he had stuffed peppers and bleu cheese stuffed steak. He laid the food out and then realized, “Shit. I forgot. You can’t eat any of this.” He felt bad but I reassured him it was okay. I took a few bites of the roasted peppers.

Dating is never easy. Although I’ve gone on a couple of dates this past fall I haven’t dated at all since then. I just don’t have the mental or physical energy for it right now. I realize I may never have. But at some point I will need to get over it because otherwise I will be alone forever. I want to find someone who gets me and loves me unconditionally sick or no. And I want to do the same for him. I want to be someone’s rock and I want him to be my soldier, willing to fight for me and with me. My ideal date would be Thai take-away and a zombie flick on a comfy sofa with fuzzy afghans. As the movie begins I will turn to him and say, “I can’t swallow.”