One More Test

I’ve been dreaming about quitting my day job as a disabled couch barnacle to be a more productive member of society again, go back to teaching or become an archaeologist, a scientist, or a jazz vibraphonist. Or all of the above.

But in the meantime, I’ve still got work to do. I’ve been writing about the saga of getting a firm diagnosis for likely Myasthenia Gravis for some time now and mentioned that I had another test last month at Stanford.

I had hoped to come home maybe with something definitive. A label to provide a tangible explanation.

But it didn’t happen.

I haven’t written about it because I needed to try to get my brain around it, try to logically work through the anger and frustration, so that I don't unleash it into the world. No one needs to see that. I was in a dark place last month and the holidays weren’t the real reason I took some time off from writing. I was seriously depressed. I’m doing a little better now but it waxes and wanes. It’s something I’ve battled my whole life and this strange ride through illness really amplifies it. Not even all the chocolate in the world can pull me out of it, but a little doesn’t hurt.

My husband and I made the long trek to Stanford so that I could do a Single Fiber EMG, an EMG that is specific to MG diagnosis. It wasn’t the test that disturbed me (more giant needles. Been there done that. Whatev). My doctor said that I couldn’t take Mestinon for 24 hours. I’ve mentioned before that I’ve been having a lot of difficulty with breathing, a common symptom of MG. More than anything, the Mestinon is helping this symptom. I’ve grown fond of breathing. I’m accustomed to it now. Please don’t take it away.

I had already cancelled this test once. It had to happen. I booked us a hotel for multiple days. I can no longer make the trip to Stanford in one day. The hospital is only about 2 hours away, but with Bay Area traffic, we often spend 6-7 hours in the car. Along with a few hours for an appointment, it’s just way too much for me now. Sadly, my body requires that I treat it like the delicate flower that it is. I needed extra days this time so I didn’t have to travel while coming off the Mestinon. I bought some oxygen designed for athletes. I packed some books, some movies, my shower chair, my wheelchair, and we said goodbye to our cats and headed out.

My husband is a master organizer and packer. All those years paying Tetris really paid off for him

I splurged a little on the hotel since we had to stay there a few days, and it was worth it. It was an adorable little hotel and each room had it’s own enclosed patio. They even gave us the handicapped room, though I think the only difference was that it had a shower chair. We ate over-priced, underwhelming take out, re-watched The Lord of the Rings, my husband slept all day, and as the Mestinon wore off, the breathing difficulty and weakness intensified. Yet, I didn’t have to do anything but sit in that hotel room, read, and hydrate. It wasn’t a vacation but it was definitely ideal.

On the day of test, I put on my finery (workout pants and a loose fitting sweater) and we headed to Stanford.

They called me in and told me to lie on the table. I had flashbacks to exactly a year earlier when I did autonomic testing and a regular EMG in the same room. I thought that EMG was a breeze. They warned me that this one would be more painful and take much longer. They weren’t kidding. The needle had to be placed deep in the muscle and held for 20-30 minutes for each reading. I had to slightly flex my ankle or leg so they could get a reading of how the muscle was responding. By the end, I was convinced I had sprained my ankle. Once they removed the needle, it snapped back. It was fine.

They told me to dress this way so I couldn't get my #hospitalglam on unfortunately

My doctor oversaw the test but it was a different doctor I had never met before who performed it. My doctor came in periodically, making jokes and being jovial as usual. When they finally finished, he read the results. “Slightly delayed but normal.”

 Everyone in the room turned to me and said “Aren’t you relieved?”

I was not. No. I was not. It didn’t matter what the results were. There’s no way that I can accept losing most of my mobility rapidly over a year as “normal.” Or waking up repeatedly in the middle of the night because I’m not breathing as “normal.” What I’m living is anything but “normal.”

Honestly, I wanted to scream. I had made a detailed list of my symptoms before the test since I hadn’t been able to talk to this doctor since May. I wanted to tell him about how much I have declined since then. How I can barely leave my couch or bed. I just wanted to be heard.

Someone in the background said “your next patient is here.” They wrapped everything up and my doctor started leaving. I asked him to wait and tried desperately to compose myself. I was angry and frustrated. I hadn’t gotten a chance to say anything. All those notes I made and I had to try to quickly condense it into a few seconds.

I work hard to maintain a calm, collected exterior in appointments and tests. This is important so you can communicate and to avoid that pesky label of being “overly-anxious.” I lost my cool. When my doctor looked at me, he must have seen it because he asked me, “are you going to punch me?”

I tried to explain the symptoms I was experiencing and my confusion. I had tested positive for the antibodies for Myasthenia (which aren't a false positive for anything else), I had the symptoms, and they were already treating me successfully for it. If it looks like a duck, quacks like a duck, isn’t it a duck? He explained he was hesitant to provide that diagnosis right now. He doesn’t want me to have to start taking a long-term steroid. I understand this, but I don’t understand why we can’t just put aside the song and dance and just finally label the darn thing. 

He said we should do the antibody test again and perhaps the results of that would change the diagnosis and mentioned I should do pulmonary function testing. The results of my antibody test showed that they have doubled. I should probably contact him to ask about it, but I haven’t. 

I knew better than to have such high expectations for one test. This was one test in years of endless testing. I forgot that this is a process. There are often no delineating lines between symptoms, testing, diagnosis, treatment. They overlap and intersect. But this one time, I just wanted something solid. Just this one time. For once.

I was in bad shape at the end of the test. I was off my medication for over 30 hours, had just been tortured, and was exhausted. Yet, I still deeply regret losing my cool. Often when you are doing testing and even during appointments sometimes, you are just a body in a room. Doctors talk about your body to each other in front of you. Motion to your presence. You sit there silently trying to absorb the medical babble to listen for something familiar or understandable. The process can be incredibly dehumanizing.

I don’t regret trying to make my voice heard. The physical and financial costs for me to get to that table were significant for my husband and I. I don’t get to see this doctor again until May. I can’t keep waiting. I can’t keep suffering with no answers and no response. I wanted to be heard. I wanted to maintain my humanity and give voice to the experience of this body.

Another disappointing test. I cried most of the way home. My husband keeps asking “why does a diagnose matter so much?” I wrote a post about it here, but there’s more. There’s something very material about a diagnosis that counterbalances the nebulous, invisible experience of illness. It’s an explanation, a satisfying answer for my broken body and spirit. It isn’t the end game, but it’s a means to move onto the next stage in the journey, open possibilities for treatment, and I could finally put the label on documentation.

So I came home and went back to my job being a couch barnacle. Maybe I’ll make employee of the month soon. I'm still waiting and waiting for some answer. Still dreaming and fighting for a better tomorrow still.

Next week I have another test, pulmonary functioning test. I hope that I can finally have some proof for my breathing difficulties, but I’m not holding my breath (see what I did there). One more test. Not the last surely. Not the end of this journey, with miles to go before I sleep.

The Beginning, Again

I am experimenting with narrative in this post. One of my goals with this blog is to mentally fit the pieces of the strange adventure I have been on together. This is an extension of my very first post and a look at how this crazy ride started:

“You didn’t have a heart attack. You can go back to school.”

Those words came after many appointments and discussions with Dr. Z, who had offered an embrace after every visit while promising his support. He was a young, handsome doctor who wore a sharp blazer instead of scrubs or the conventional khakis. His office staff always looked ready to go to a club after work. I was convinced the girl who prepared the EKG for me every visit was younger than my college students.

I had been seeing this doctor for months and had just informed him that despite the many times he answered my litany of symptoms with comforting suggestions that everything I was experiencing was “stress,” I had no choice but to leave my PhD program and stop working. I was unable to keep food in my body, I couldn’t safely drive because of the dizziness, my heart rate never dropped below 100 bpm, I was unable to stand, I had lost 15% of my body weight. What other choice did I have? I wanted to believe him, but these were the facts.

I actually initially liked Dr. Z. I made my first appointment with him out of pure desperation.

My husband and I moved to Nevada in 2010 so that I could start working on a PhD in literature, a goal I had been working towards for many years. The winter of 2010 had record snows in Nevada, and January of 2011 started out icy and cold. My husband and I adapted well to living in the snow and I actually liked when it was below 10 degrees in the morning and I made the long trek to the department to teach my freshman composition classes. The cold wrapped around me like a frosty breath, and the snow muffled the grimy bustle of Reno. It was almost beautiful.

I was working toward my second year as a PhD student in 2011, a time to really choose a path that would define my academic career. But something was wrong. I could feel it in my bones that something was wrong.

Constant headaches. Entire nights without sleeping. GI issues making it impossible to leave the house. Exhausted. Dizzy. Working on a PhD will bring out or aggravate any latent health issues. It will wear your soul thin. I was starting to think what I was experiencing went beyond the stress of the academic life.

I was an old, injured gymnast at 14 and then was seriously injured in a car accident at 21. When I was 25, I was diagnosed with fibromyalgia and started living with constant migraines. I’ve never been in the greatest health, but I always managed to never let it hold me back.

But this felt different.

I was trying to push it all to the side and keep my head above water. One memory stands out in the blur of early 2011. My university hosted a group of famous scholars, and all the grad students were gathering to attend the talks and meet them. I remember standing at the desk I shared with two other TAs in the basement of the English department unable to focus on anything because everything was spinning. I knew I was going to throw up from the dizziness. I could hazily detect someone in the background asking “Are you coming?” I walked the half mile back to my car and drove home.

I had to miss some of the classes I was taking and some I was teaching. All my life, I never called in sick to work. Never. No matter what I was experiencing, work was always a top priority. This wasn’t me.

Another memory stands out. Because all events in graduate school and academia seem to revolve around alcohol, one of my professors decided to hold our last class meeting in May at a restaurant so everyone could get wasted. I showed up but didn’t drink. I remember sitting across from my friend and trying to laugh and joke with her but the whole room was spinning. My professor had a drink that was an entire bowl of liquor, designed for multiple people. He finished it by himself and ordered another. Most of the grad students left the restaurant to walk to everyone’s favorite bar to continue the party. I had my husband pick me up because I didn’t think I could drive from the dizziness.

Two weeks after this I ended up in the hospital. As is often the case in my life since getting ill, the semester ended and I had collapsed into a puddle of sickness. My husband went to bed early one night because he worked at 4 AM every day, and I walked into our bedroom shaking and weak. I told him something was wrong. He felt my pulse and called his mother who is a nurse. We drove to the hospital.

They clocked my pulse at 175 when we got there. If you ever don’t want to endure the long wait at an ER, show up with a raging pulse. You’ll be fast tracked to a room and a CT scan.

The young doctor came into my room and I explained the bizarre symptoms I had been having, and he handed me an Ativan. I was dehydrated from the constant diarrhea. After an IV and hours of resting, he looked me in the eyes and said, “You had a panic attack. You can go home.” I know now that even with a diagnosis, many POTS patients are often told they are having a “panic attack” by ER staff. I didn’t know any better then.

Days after this, I couldn’t lie on my back anymore in bed because my heart was pounding so hard that I couldn’t comfortably sleep. This is normal, right? No, this isn’t normal. But, am I wrong? After leaving California, I had neglected to make appointments with new doctors unless I desperately needed medication refills. When you’re taking three classes, teaching two, and working seven days a week to keep up, there is no time for managing your health. I let it slide. I was busy.

After the ER visit, I made an appointment with a primary doctor everyone recommended, Dr. Z. I wanted to see some specialists. He instead told me, “I can manage this. Don’t worry about it.” I wanted to believe him.

The medication I had been taking for years for migraine prevention was causing tachycardia suddenly. He had me stop that med and start another, which also made my tachycardia much worse. After many visits where my vitals were always anything but normal, he finally referred me to a cardiologist.

This cardiologist had an unpronounceable name. I checked in to his office and as I sat down I saw the office attendant lean over and comment to another attendant about how young I was. Being the youngest person in the waiting room to see specialists is common now, but it terrified me then. That cardiologist told me “it’s just stress. Stop drinking coffee.” You can’t stop coffee if you’re a grad student. That’s a death sentence. I would wake up in the morning that summer and take my pulse. The monitor would show 140 bpm and I would roll my eyes and then drive to Starbucks.

He ordered an echocardiogram, which was my first experience with disturbing medical tests. A nurse pressed sound waves into my chest and I stared at a monitor inches from my face that intimately and vividly displayed my beating heart and veins. It was like an initiation ceremony into the many medical tests over these years and the ever-constant reminder of my own mortality and vulnerability. It was the beginning of a glamorous life as a lab rat. I have a poem about it here.

There were some good times during this mess. That summer, my husband and I got a few hikes in, including one in Tahoe with some close friends. One of them lost his glasses in Lake Tahoe and we spent the day searching the murky waters looking for them while laughing. I was teaching a summer class with underprivileged high school students who wanted to earn college credit early. I was ill and wearing a heart monitor under my clothes while I was teaching, but that is still one of my favorite classes I’ve ever taught— probably the most rewarding. My husband and I saw the re-release of The Lord of the Rings in the theater. In a packed theater of fellow nerds and grown men in homemade chain mail, we communally cried through every bit of it.

These happy memories are filled with color and vibrancy that contrast the other memories of that year that are a grey haze. I didn’t know then that my days of hiking were coming to an end.

Summer ended, fall semester started, and I pushed all the health stuff to the side so I could survive another semester. Yet, by the end of October I had gone from 135 pounds to 116. I was unrecognizable. Handfuls of hair were coming out of my head. I was still trying to show up to my classes and to teach. All of my time was reserved for that, so I couldn’t find time to fit any appointments with doctors in. I felt powerless, hurtling toward disaster.

I emailed the head of the grad program on November 2^nd to tell her I had to go on leave. My psychiatrist, the only doctor who took me seriously then, gave me the note so I could go on leave. I should be sending her flowers every month still.

I won’t lie and say I enjoyed working on the PhD in literature. In fact, I had already been contemplating leaving.  I had been initiated into a world that was incongruent with my real desires. I’ll reserve my true criticisms of it to say only that in that world you pledge your fealty to an academic plutocracy who throw mere crumbs of glory for every ounce of 70 hour work weeks and neglected relationships you put in. That glory becomes something of a drug, a drive for validation. I learned the real meaning of “diminished returns” doing that work. There were many times I wanted to stand up and have a Fiona Apple moment, proclaiming that "this world is bullshit."

But I got out. I feel like a cult victim sometimes looking back, thinking “what kind of screwed up mind game was that? What were those bizarre rituals? How many sacrifices did I participate in?” Some people are well-suited to academia. More power to them. All I wanted was to get back to my real love—teaching—where I could see the fruits of my work in my student’s lives, without the distraction of pretending to be a scholar.

After I finished my MA in 2008, I taught as an adjunct at two community colleges. My plan was to take time off and apply to PhD programs with the ultimate goal of teaching literature at a state college, where I could bask in the splendor of teaching and research. I was a bright-eyed, newly-minted MA thrown full force into the life of adjunct. I learned that I had a real passion for working with developmental classes (below college-level). I enjoyed teaching despite the grueling life of an adjunct and driving 150 miles a week commuting between the colleges. I had a new plan: get a PhD and teach full time at a community college. That was my dream scenario.

So I focused on studying for the GREs and preparing applications as I was teaching. My entire life, I have always been preparing for what’s next. I have never felt wholly invested in anything because I was preparing for some determined, carefully planned future. If illness has taught me anything, it has taught me that a “carefully planned future” is an illusion. Life makes other plans and you have to roll with it, but I hadn’t learned that lesson yet.

I look back at this time between 2006-2010 as some of the best years of my life, but I regret not being more present. I had a rewarding job, my husband and I were hiking all the time, I was surrounded by my friends and family, I was playing music and performing regularly. But I relented to the nagging “what else?” that looped in my brain. Ambition is a vehicle that delivers you to your goals but it can also blind you to a fulfilling present. I had no idea that my days of enjoying those passions were going to violently end. If I had known, I wouldn’t have wasted the last of my pre-sick days in grad school. Some of my bitterness about grad school stems from this hindsight view, but I’ve tried to learn lessons from lamenting lost time.

When I left the PhD program in November 2011, I started an arduous journey through the absurd labyrinth of the medical system. I rejected my primary and my cardiologist’s assessment that all I was experiencing was “stress.” I started a two year cycle of going from specialist to specialist looking for answers.

In total, I have seen four cardiologists, three neurologists, three gastroenterologists, two endocrinologists, two dermatologists, one rheumatologist, two primary doctors, two psychiatrists, two psychologists. There’s more, but that’s what I can remember at least. I should turn this list into a “12 days of Christmas” parody and call it the “12 Referrals of Illness.” I would have 3-5 appointments a week during this time, which was grueling while I was ill.

One of the buildings I had to visit regularly for appointments made me uncomfortable. Even the sight of it right now would make me shudder. Walking into it, you would suspect the building was surrounded by Dementors. I was always the youngest patient in that building by at least 30 years. One day while riding the elevator up to the second floor, a young UPS driver got into the elevator with me. As the door closed, he leaned over and said, “coming here always makes me really scared to get old.” I was thinking the exact same thing at that moment. My husband swears he had a zombie encounter in one of the waiting rooms while I was in an appointment. I had entered a disturbing world many young people never see.

Despite the constant appointments, endless vials of blood work, and co-pays, I was getting nowhere. Some doctors recognized the extent of my health issues but my symptoms were outside of their expertise. Shuffle her off to another doctor. Some doctors continued to dismiss me.

I saw an endocrinologist in the Dementor building who patted my head and said “you’re fine.” Before he walked out of the room, he listened to my heart.

“Huh,” he said. “That’s strange. The heart should accelerate when you inhale but yours is over accelerating. This may be an autonomic issue.” This was the first time I had ever heard that word. Again, this was outside his expertise. He sent me on my way.

My rheumatologist convinced me to see another cardiologist because she thought my excessive heart rate was still concerning. When I walked into this cardiologist’s office, my pulse was 135 and my blood pressure was 70/50. I was trying to hold onto consciousness when I drove there on a snowy, icy day. He mentioned the word “POTS.” He told me to stop taking all of the drugs my primary had me take because they were making me worse. Yet, when I saw Dr. Z again he tried to convince me to stay on them.  I stopped taking orders from him.

Not long after I left school, I had convinced my husband to move back to California. He thrived in Nevada. He was shooting in the desert every other day, and he loved his job and the people he worked with. But every time I left my house, I felt a blanket of failure wrap around me. I had to get out. I wanted to go home, rest, recover, and reclaim my life. We made a deal and my husband started the process of transferring back to California. We still discuss moving back to Nevada because he loved it so much.

We moved back home in March 2012. I was happy to leave Dr. Z. To this day, my husband swears if he ever ran into him in public he would physically harm him. Someday when I write my book, I want to mail him a signed copy. His lack of care (literal and figurative) set me back in my diagnosis at least a year. Unfortunately, I have learned that many Dysautonomia patients have a “Dr. Z” who dismissed them, made them feel crazy, and were an obstacle on their road to diagnosis. I hope that someday, with more awareness, this will no longer be a typical story.

In my youth, I liked to dream. If I had to ever go hungry, I swear I could subsist on my idealism alone. That idealism was the driving force for most of my decisions in life. Over the last few years, those possibilities and the vastness of those dreams have narrowed and narrowed—until now I can fit them in the small of my hand. Yet, life can take you in unpredictable directions sometimes. The strength you obtain from surviving that unpredictability is worth every battle scar in the end. 

The story doesn’t end here obviously. The adventures continued when we moved back to California in 2012. The road to diagnosis is long and winding (and I’m still on it). That story is forthcoming.

The Spoon Theory

You might be wondering why I am talking about utensils in this post, but in the chronic illness community, there is often much discussion related to spoons and not because we all have a strange affinity for cutlery. 

For the chronically ill, it is a battle to perform all the necessary daily tasks (and maybe even some tasks you want to do) within the confines of our limited energy and physical strength. The only way I can describe this to the non-chronically ill is to imagine the worst flu or illness you’ve ever had. You’re sick in bed, exhausted, in pain, you can’t stray too far from a bathroom, yet you are supposed to complete all your typical daily tasks (such as going to work, taking care of children, going to the grocery store, etc). Yet, even accomplishing one of these things is impossible. So even for those who are healthy, you’ve experienced what it’s like to live with limited spoons. 

For the chronically ill, this is what your day to day life is like except it will (for many of us) never go away. Postponing important things until you are flu-free and back to full health isn’t possible. “Spoons” are a metaphor for the limited energy those with chronic illness have and the decisions one has to make to “spend” them, often involving hard choices. Christine Miserandino created this metaphor while describing what her life with Lupus is like to a friend, and you can find her story here. She showed her friend 12 spoons and detailed how to spend them wisely to manage illness and disability while trying to live a full life. Often, six spoons may be needed to manage symptoms a day so six are available to complete daily tasks. The chronically ill and disabled have to choose wisely how to spend those spoons. If you use more than your allotted spoons, you pay for it by losing spoons the days after.

This metaphor has become essential for those who are ill and even those who aren’t to understand the struggles and triumphs of managing illness while trying to live. Like most self-defined labels, “Spoonie” is a term claimed by many as a form of empowerment, understanding, and self-expression. The term connotes a sense of pride and a sense of community. When I tell my husband “I’m out of spoons,” he knows exactly what I mean (though he often tells me “why don’t they say batteries instead of spoons?” he still gets it). Whether you are chronically ill or not, anyone can be initiated with this metaphor. 

This last week for me was a good example of how I live with limited spoons. Miserandino described 12 spoons, but over the last six months as the likely-though-unofficially-diagnosed Myasthenia Gravis combined with POTS is making me often immobile and barely able to leave my couch or bed, I’ve been living with 3-4 spoons a day. It's not enough to do the things I have to do (showering, getting dressed, eating, etc) and the things I should do (clean and exercise). This doesn't include the things I really want to do (play music, leave the house, see friends and family, cook, bake, paint, skydive). Ok, skydiving is not a goal but I like to dream.

Is it possible to get more spoons? Exercise, for me at least, is the only thing that gives me a return on investment for spoons. Deconditioning and exercise intolerance are very common for POTS and MG, but it is important to maintain strength and stamina. I’m a former athlete and have always been active, and exercise has often been more beneficial to me than any medication I’ve ever taken. I reserve spoons for it. I'm also supposed to be doing physical therapy right now, which requires at least 2 spoons.

So I have to choose very wisely. A few months ago, I told my husband I wanted to bake something so he asked me to make some ranger cookies. Since life isn’t worth living without chocolate, I found a recipe that included some. He bought me some ingredients and I printed the recipe.  I wanted to do this for him since he is a fantastic caregiver and I rarely get to do things for him. 

Those ingredients sat in the bag in my kitchen for two months because I couldn’t muster the energy to make them. This week, finally baking them was one of my goals. I saved some spoons and made them (while sitting of course). Having Dysautonomia means you and gravity are frenemies now. But you can be fabulous and cook, bake, teach, sing, anything else while sitting. Although I had to lie on my couch in between batches to recover, I felt badass and accomplished, and he loved them. I overspent on spoons but it was worth it. A crunchy, chocolate-y success.

Husband-approved cookies. Yes, the beard is real

I mentioned in a post last week that I was supposed to go to Stanford this week for an important test (a single fiber EMG) so I could finally get a likely diagnosis for Myasthenia Gravis. I can barely leave the house at all right now so traveling 2.5 hours each way for this trip was going to be a massive endeavor, even with my husband’s help. A trip like this could take 15 spoons, especially since my reward for getting there involves being stabbed with a needle repeatedly. I booked us a hotel to make it a two day trip to make it more manageable. I also had to stop taking the Mestonin I recently started taking (a drug that treats MG and has been used off-label to treat POTS) for this test. I’ve been having difficulty breathing for some time, but along with other symptoms, it has been worsening over the last few months. I’m taking a miniscule dose of Mestonin but it is doing wonders for my breathing issues already. 

When I stopped taking it, the breathing problems returned full force. Not being able to take this medication cut into my 3-spoon-a-day allotment. As soon as I opened my eyes on the day we had to leave, I knew it was going to be a 1-2 spoon kind of day. I was in trouble. I tried to lie in bed for hours before we had to go. We put off leaving as long as possible, but when it was time I knew there was no way. The glorious effects of the Mestonin had worn off and I was looking at having 0 spoons on a long day of traveling. 

The test is rescheduled for a month from now and I’m crossing my fingers I can gather enough spoons to get there. Maybe I'll start a kickstarter campaign for people to donate spoons.

These are examples of the difficult choices and constant measuring of cost to benefit ratios Spoonies have to make. I have been living with POTS for years now, but I’m still learning how to live within my capabilities and limitations. There’s a learning curve with chronic illness. I rejected my limitations and fought against them, but I’ve paid dearly for that folly. The spoon theory has helped me understand that I have to live a life I am physically able to live, not the ideal one I would rather be living. 

Living within your spoon allotment lets you live a fuller, authentic life. I recommend explaining this metaphor to those close to you so they understand that despite your limitations, you are doing the best you can. Forks, knives, spoons, whatever, we’re chronic illness warriors, living bravely and with dignity. Use your spoons to live the fullest life possible.

A Spoonie created a choose-your-own adventure game based on the spoon theory that I highly recommend, especially for non-Spoonies, to understand what it's like to live with chronic illness. You can find it here

Now What

This post wasn’t the plan. I'm working on other posts about navigating the medical system and testing, but I fell down the rabbit hole again...

Four. Four times I have had to take a leave of absence from work over the last three years. Last week I had to take another leave of absence from work, leave for the rest of the year. This is the longest leave I have ever had to take (not counting the year I didn’t work). A few years ago, I used to never call in sick to work. Despite working hard to keep up my energy and stamina this summer, I only made it through a week and a half this Fall semester before I started to hit The Point of No Return—the dreaded long period of being bed-ridden after having to push myself past my limits. 

The semester didn’t start well. My teaching schedule included 9 hour days with driving and teaching hours in a row without a break. Something has changed. This time last year, I had almost this exact same schedule. I struggled, but I could do it. The difference now is shocking to me. I decided to no longer stand or walk while teaching (something I should’ve been doing last year). So I would sit and try to teach, but it wasn’t enough. I could barely move and the disabling, new symptoms I have been experiencing this last year—losing my mobility, intense weakness, difficulty breathing, etc—were getting worse. Driving has gotten much more difficult and a little scary, which makes commuting complicated. 

I had been mentally preparing for having to take a leave of absence all summer. After the sheer brutality of last semester (including hitting The Point of No Return twice during it), I knew it was a definite possibility. I just didn’t expect to only make it a week and a half. 

My health has gone downhill this year, and I'm in disbelief with how much less I am able to do compared to just a year ago. But I am learning how to accept this and try to work around it. I feel incredibly guilty about having to go on leave but realistically I didn’t have any other choice. I’m thankful for how supportive my work has been and that I can have this time to focus on my health.

So now I am trying to speed along the endless appointments and tests I have been doing this year. I believe they are getting closer, and I am currently being tested for Myasthenia Gravis, but nothing is for sure. I am trying to rest. I made myself a schedule to work on other projects like writing, painting, music, cooking (while sitting of course), hobbies and passions I haven’t had any energy for the last few years. But I already miss work. I am a workaholic to the core. I told my husband I’d even take a stack of essays right now and he said, lovingly, “you have a problem.” Yea, probably.

I’m still fighting. I’m still pushing forward. Despite these struggles, I have a good life and I’m working on being well enough to enjoy it more. Adversity, ain't no thing. As Maya Angelou said, "Still, I rise."