Ruthless

I was discharged from the hospital last night. I was admitted on Monday after going to the ER. I wasn’t having anaphylaxis. I wasn’t sure exactly what was wrong. But I felt disgusting. I had a pounding headache and bad bone pain in both legs and my pelvic bones. I was exhausted. I was so tachycardic that it made me short of breath. My blood pressure was all over the place. I was miserable. Nothing I did was helping. So I went in.

I am adrenally insufficient. I have been for years, since daily high dose prednisone in 2013/2014. My body doesn’t make cortisol so I have to take daily steroids to compensate. When my body is under physical stress, I have to take more steroids to cover the additional need for stress hormones. If I don’t, it can cause a life threatening situation called an Addisonian crisis. I had a crisis in May 2014 that lasted several days. Since then, I am very careful to monitor my body for signs of low cortisol.

In case it’s not obvious where I’m going with this, I was having an Addisonian crisis. My cortisol level was almost undetectable. It didn’t feel like it has in the past and I have no idea what triggered it. I took some extra steroids and stayed a while to see how much it helped. I sat in my hospital bed all night, headphones in, doing work. Work is rapidly becoming the only thing in my life I can control.

I take a lot of medications. I take handfuls of pills every day. I use IV meds and IV fluids every day. I get weekly and monthly injections. The schedule I have to keep in order to accommodate taking all those meds is insane. I basically take medication every thirty minutes while I’m awake. I have to carefully time my meals and anything I drink. I can only exercise at specific times. I can only shower 1-2 hours after night time meds. I have to be very careful with things like public transportation and going to a crowded place in case I get stuck somewhere.

I professionally develop diagnostics to determine which patients will benefit best from clinical trial therapies. It is easier to develop diagnostics than to manage my health from day to day.

People often ask how I am able to travel and work full time. IV Benadryl is not the entire reason I can do those things but it is a huge part of it. I have been using IV Benadryl at home for almost four years. It has kept me out of the hospital on many occasions. It has prevented many reactions from turning into anaphylaxis. It gives me much more control in emergency situations and has kept me safe in many situations that could otherwise have been catastrophic.

Despite how much this drug has helped me, I literally get anxiety thinking about how much IV Benadryl has helped me. The reason for this is that it is a nightmare getting ahold of it. It is not expensive and it is not a controlled substance. Still, getting this is a weekly stressor. I get all my IV meds, infusions, and line care/nursing through a home infusion company. Despite the fact that they provide me with a supply of everything else I need several days before I need them, they will not do this with Benadryl. My doctor has asked. I have asked. My nursing team has asked. I have asked all the people who can be asked. The pharmacy will not do it. Instead, they insist that they deliver me meds on the day that I will be out of them, meaning that if that order does not arrive as expected, I could be out of medication.

I have been a patient there for four years. My nursing care and line care has been amazing. That’s why I have stayed there. I have had a continuously used central line for all that time. I have never had an infection. The reason I have never had an infection is because I adhere to really extraordinary guidelines pertaining to contamination. If I think there is a tiny chance that something is contaminated, I just throw it away and start over. If a needle slips, or I drop something, or accidentally touch a surface with the syringe, I throw it away. This means that I throw away a vial of Benadryl every few days. I have asked the pharmacy to provide me with a few extra days of meds every few months to cover for this situation. They won’t.

The worst part of this whole situation is that my meticulousness, which is regularly commended by my providers, means that I am already working with less medication than I should be. Compounded with this pharmacy’s actions, I have been left without medication on several occasions.

Someone new at this pharmacy recently decided that they would send me my meds a day early. This seemed like a great plan. I was totally onboard. But I was still nervous that it would get messed up. It also didn’t allow for short term changes or short notice deliveries. Earlier this week, when I was in the ER before being admitted, I had to use my own meds for more frequent dosing because they weren’t getting my meds on time. (This was acknowledged and approved by the ER team – I would never do this unless they were aware and onboard.)

The bottom line is that my pharmacy delivery is going to be a day late again after being assured again today that it would arrive today. Because I had to discard two vials over this past weekend for possible contamination and I needed to use extra on Monday (as directed), I am now out of this med. Again.

I had a legit breakdown tonight when I realized that I was going to be out of this med again. Screaming, hysterically crying, the whole thing. This has been such a struggle for so long over something that is really, really stupid to argue about. No one argues that I don’t need the med. I don’t take more than I am directed, ever. No one argues that I should discard anything that might be contaminated and start over. But no one in any position to authorize something as silly as giving me three or four extra vials a week will do so. So I will be up all night hoping I don’t end up having anaphylaxis and going to the hospital if I have serious symptoms that could potentially become anaphylaxis even if they didn’t start that way.

I am very, very tired of this life. I have lots of good days. But as time as gone on, the bad days have gotten much worse. There is no aspect of living with chronic, life threatening health problems that is not stress. I really want to just rip this port out and stop taking IV meds and stop working and stop fighting every single day. I just want to rest. I want it to be quiet. I don’t want to have to explain myself over and over and beg people who just don’t care to help me.

 

There is a ruthless truth to chronic illness, one that has taken me years to come to terms with. It is this: that fighting against my illness and the life it gave me is not a successful way to improve it. I cannot overcome this disease. I can only cooperate with it. I have to learn to live with it, have a relationship with it, greet it every morning and say goodnight when I close my eyes at night. It is a part of me that cannot be cut out or ignored. And to have a life with it, a good one, I have to want that life. I can’t fight for a life I don’t want. My insistence upon having a good life with this disease is not a choice. It is a survival mechanism. It an instinct.

I know that this will pass, but there are some days when I don’t want to do this.

I don’t want to fight anymore. I don’t want to be afraid.

And tonight, I don’t want this life.

Monster

I have a sunburn. Today, I embarked upon that most quintessential New England autumn venture: apple picking. It was supposed to be about 70 degrees with a breeze and some clouds. Instead it was almost 90 degrees with a little breeze and a sun beaming directly down upon us. I always wear sunblock on my face and cover a lot of my skin, even in the summer, so it wasn’t too bad.

The sunburn is on my chest and shoulders. It’s not serious. It won’t blister. It looks red and angry and kind of hurts. Not a lot of pain, but there. Persistent. Stinging.

I have been sick a long time. And that means have been in pain a long time, too. There are lots of different pains and I know them all. I know the loose instability of stretching a joint too far. I know the burning of flushing skin and the stinging that remains after the flush is gone. The abdominal neuropathy that spreads like lightning across my midsection, electric fractals emanating from a central point. The hard swelling of my colon when fluid is trapped in the tissue. The way it feels like broken glass when my GI tract reluctantly moves things through its lower portions. The white hot fire of something passing over an open wound. The acid throbbing of vasculitis. The beating against the back of my skull of a terrible headache. The pressure of food that will not move as my stomach swells around it.

I have needed pain medication of one kind of another for several years. I have lived a very privileged life and I have been very lucky to have a medical team that has been largely the same for several years. My doctors know me pretty well. And because they have seen me screaming in pain and seen the damage that caused the pain, they are willing to help me manage my pain. It is a never ending process of adjusting medications and behaviors and foods but I have options that many people do not. I am lucky. Very lucky.

Drug addiction is a hell I wish on no one and one that has affected me personally in many ways. Heroin abuse is often a complication of opiate abuse: it renders a similar high but is cheaper and easier to get (as I understand it – I do not have personal experience with heroin). Sometimes people who are prescribed opiates for legitimate reasons become addicted and are forced to buy pills illegally or resort to other products, like heroin. Often, people with addiction come to heroin or pills another way, without ever having had a medical reason for using them.

Last year, the CDC made broad recommendations regarding prescriptions for opiates, probably the most well known drug class of pain killers. I had anticipated their recommendations with dread and I was not disappointed. In brief, their recommendations were that every other avenue for pain management be thoroughly exhausted before use of opiates, which would almost certainly render pain relief. The quantities to be prescribed were small and the courses short, irrespective of whether or not this was appropriate to the pain condition or realistic in any way.

Patients would all be drug tested frequently so that we could prove over and over again that we are not drug addicts. Our medication would not be filled without us proving over and over again that we are not drug addicts.

And for those patients like me who have debilitating, chronic pain, there were provisions for trialing removal of pain meds so that they could determine whether or not we actually needed them and if it was possible to reduce the dose at all. Most alarmingly, in my state, they adopted guidelines that could people like me to be evaluated by a doctor who knows nothing about me or my rare disease in order to determine whether or not I really needed these drugs. I am not an addict. I take my medication as directly. I fully comply with any and all guidelines and am happy to pee in a cup every time they instruct me to. But I am still afraid. I am afraid that I will do everything right and still end up in severe pain with no drugs to manage it because government agencies are conflating the epidemic of drug addiction with the necessary pain management of chronic pain patients. And that fear is getting larger and larger as time passes.

This past week, a large pharmacy chain in the US announced that they would only dispense seven days of opiates for “new” patients. There is already a lot of debate about what exactly this means but I guarantee it means more trouble and stress and fear for people like me. I cannot imagine a system in which a pharmacist can know my personal health and pain situation better than my provider of many years. What if the pharmacy decides I’m a new patient and just won’t give me more than seven days? What happens then? There are no answers yet on what will happen, but I don’t need to specifics to know that the people who will be most affected are people like me.

There are many practical reasons why this particular practice is a terrible idea. For one, it requires patients to be seen again to get a new prescription after seven days. For a pain situation in which a patient might need pain meds for a month, this would translate to four office visits instead of one. That’s four copays. That’s four trips with associated expenses. And that’s four copays at the pharmacy. That’s four office visits that already overextended provider’s office now needs to find time for. And when they can’t find the time, those patients may be left without any pain medications until the next appointment.

But these are not the reasons that literally keep me up at night so that I am writing this post at 12:50am despite being absolutely exhausted. What keeps me up is that no matter what, no matter what the intentions are for all these restrictions, and who they are supposed to affect, me and people like me will suffer. We already know what it is like to be treated like a junkie. We already know that we have to convince every provider we interact with that we use pain medication responsibly as directed at appropriate doses for our pain condition. We already know that we’re never totally convinced that those providers believe that.

But most of all, we know pain. And we know that in the current climate of increasing restrictions on pain management, we will have more pain than we used to. Pain that could be treated effectively if there was not such a stigma upon using opiates for chronic pain when everything else has failed. Pain we remember and are afraid of.

Pain is such an abstract quality to those who don’t live with it. People who don’t have it often do not empathize with those of us who do. We are often painted as lazy or attention seeking. Some day, those people will know about pain, and they will feel guilty then. But it will be too late at that point. People like me can’t wait for that day.

Pain is a monster with many faces that haunts every moment of your life. It eats our sore muscles and swollen joints and ruined organs and twisted bones. It eats and eats and eats until there is nothing left that suggests a person lived in this vessel. That there was once a life here, and dreams, and aspirations. That beautiful things lived here before they were destroyed.

Pain is not something you can overcome as a society by pretending the people who have it will be able to figure out another way to manage it when you rob them of their best tools. Chronic pain kills people. We know this fact. It is not disputed. Pain causes inflammation that can cause strokes, heart attacks, cancer. It causes despair and loneliness. It causes suicide.

I am afraid that we will not be remembered as the generation that overcame opiates. I am afraid that we will be remembered as the generation that pain destroyed. If we are remembered at all.

 

 

The really important things require much more than that

I have two best friends named Allison and Alyson who are both very, very into music. With few exceptions, all of my musical influences arrived to my ears via one or both of them. Alyson lives in Seattle. Alli and I went to visit her there in 2014 when I had a PICC line and 40 lbs of steroid weight and a constant flirtation with anaphylaxis.

While we were visiting, the three of us went to Portland, Oregon for the weekend. It was a really amazing and cathartic experience for me. It feels like that was when I began to reclaim myself and my body and my life. It was an experience I will never forget.

Alyson has always been the type of person who follows bands around the country because she is much cooler than I am. In the last few years, she has been obsessed with Kasabian, a British rock band. She flew into Boston for less than 48 hours to see them in Boston two days after seeing them in New York and a few days before following them to Chicago.

I hadn’t really heard much Kasabian before but tonight I went to the Kasabian with Alli, Alyson and Alyson’s mom, Charlene. We were having some hairy health care moments in the line outside, waiting to get in, so I wasn’t really sure how things were going to go. But I decided that if we got into the venue that I was going to be a huge Kasabian fan for the duration of the show. It didn’t matter that I knew virtually nothing about them. I knew I loved the people I was with. I was happy to be well enough to even go to a concert. So I was a Kasabian fan. Sometimes it’s enough to just believe something, even when there’s no good or logical reason for it. Believing is enough.

We stood right up front and jumped up and down and screamed at the band. I really shouldn’t have sang along since I knew literally no words but that has never stopped me before. I jumped and bounced and screamed for two and a half hours. The energy in the crowd was amazing and the show was great.

I said to Alli tonight that I think that concert years are like dog years. I am therefore 132 concert years old. It sure as hell feels like it. I’m going to need a cane to walk tomorrow. No thigh blaster workouts necessary.

The Portland Sisterhood does Kasabian

I have a Wall of Hopeful Things in my home office space, where I do most of my MastAttack work. It is covered with things patients or parents have sent me. There is a trinket dish on my Wall of Hopeful Things that says, “It is not enough to put your heart and soul into something, the really important things require much more than that.” I think of this as the MastAttack motto. You can’t build something without leaving pieces of yourself among the blocks.

In the last few weeks, I have painstakingly mapped out the next year of my personal, professional (work) and professional (MastAttack) worlds. I have monster goals for MastAttack for the next year. I have started putting together the materials for the course videos for the spring. I have been networking a lot to work towards some other MastAttack goals. I have professional development and program goals at work. I have lots of personal things that I have forced myself to find time for. It is an intimidating amount of life I am trying to fit into these time constraints. But I decided that I could do it, and as soon as I did, I became capable of it. You have to believe it and hold your nerve. So here goes nothing.

Hope you all are having a super weekend. Be on the lookout for some MastAttack announcements this week.

It is not enough to put your heart and soul into something. The really important things require much more than that.

Flame

A few days ago, while I was walking my dog, I thought I saw my best friend’s father. He died two and a half years ago after a series of complicated health issues. I had known him for 25 years.

After not seeing him, I started thinking about the last time I saw him. It took me a while to remember when exactly that was. I thought of events we both attended, weddings, birthdays, and backyard fires on summer nights.

The last time I saw him wasn’t at an event. A few weeks before he died, I visited his daughter and walked upstairs to say hi to him and his wife before I left. It was painfully ordinary and completely unremarkable. Just another autumn day, only noteworthy in retrospect. I had no way of knowing that it was the last time I would see him.

I find myself wondering lately if today will be the last time I do something, some small thing that formed the rich backdrop of my life. I also find myself wondering how many things I did for the last time without realizing it. It’s so easy to do, such a slippery slope. One day, you’re tired and you want a break. Not a forever break, just a short break. So you decide that you won’t do these things today. Letting things go for one day is fine. And so you do. You let it go. You put it down and you never pick it back up again.

When was the last time I didn’t have abdominal pain? When I felt healthy? What were those days like? What did I feel? What animated the world around me? I can’t remember. Years from now, when I look back, I won’t remember this moment either, or the meaning of these words. I won’t even remember writing them. How can any of this matter so much when I won’t even remember?

Every patient has a line where they stand their ground to not lose anything else. Every patient decides that this position must be held for as long as possible and that once this line is crossed, you can never go back. This is how I feel about eating. This is my line. It’s not that I can’t live with a feeding tube or on IV nutrition. It’s not that I find either of these options particularly repulsive. I just want to be able to eat. Such a simple, primal thing.

I have always felt that I have this little light inside of me, really deep, beneath all the swollen and damaged places. It has been dimming for years now. I have been cupping my hands around this tiny flame to keep it alive. But I can’t keep out the wind forever. I am only one person. And I am so, so tired.

I am afraid that I am approaching the last of the days when I can eat. I am afraid that this little light will wink out and nothing will replace it.

Unto itself

It is hard to adjust to the idea of being sick. Not so much the daily activities of being sick but of identifying as sick and viewing the world through shaky, feverish lenses. But you do it because adaptation is instinctive. One day, you think, “I could get used to this.” And then you do.

It was harder for me to adjust to the idea of being very sick. Sick was manageable. Very sick is not. And I am very sick.

I took medical leave last fall. Things got out of control really fast. New complications stacked up quickly and crushed what control I still had. Every problem I ever had was worse than before and a whole bunch of new ones showed up. I slept in soaked sheets, shivering with fever dreams, waking shaky and foggy. I couldn’t keep food in the top of my GI tract and couldn’t get it out of the bottom. I took meds by the handful.

I have been sick like this before. The symptoms were different but the degree was the same. When I first applied for short term disability, I expected to return to work in six weeks. I have recovered before in shorter time. I thought if I could adjust my meds, add in some new ones, and get plenty of rest, that I could get back to baseline.

That’s not exactly what happened. Some things improved but my GI issues got worse. I suddenly had gastoparesis. I started having a lot of pain with eating, even things that were mast cell safe. I had epigastric pain on top of my normal abdominal and visceral pain. I have started having chest pains too from difficulty swallowing and food getting stuck in my esophagus. Things changed. My body changed. And my ability to handle it changed.

Around 11pm in Tuesday night, I was sitting on my couch, watching the end of a movie. I had had a completely unremarkable day. I ate normal safe food in normal safe amounts. I took my meds on time. I hadn’t done anything strenuous or upsetting.

As I was sitting there, my lower lip started to swell inside. Then my tongue. I’m not super prone to swelling and it’s not always part of my anaphylactic presentation. I went to the bathroom to inspect my mouth in the mirror. I wasn’t having any other symptoms so I swished some cromolyn and went back to my movie.

A few minutes later, my airway swelled. Things happened very quickly from that point. I was having trouble swallowing and I was producing a ton of saliva. My voice got raspy. I had hives all over my neck and chest and my blood pressure started dropping. I have epipens everywhere at home – next to my bed, on my bathroom vanity, on my desk, the kitchen table, my coffee table, my purse – and fortunately they were close enough for me to reach. I injected into my leg while on the phone with 911. My airway opened again and I used IV rescue meds while waiting for the ambulance to arrive. They transported me to the emergency department of the local hospital where I receive all my mast cell care.

I started rebounding about three hours later and needed a few more doses of IV rescue meds. I hung out overnight until I could talk to my doctors in the morning. I went home Wednesday.

I had an appointment with my mast cell GI specialist on Thursday. In news that shocks no one, my GI tract is pretty inflamed. It is swollen and so sore that even touching it causes reflexive guarding. (Reflexive guarding is when your abdominal muscles engage when you try to touch the abdominal organs because they are sore and inflamed.)

I am off food for a few weeks at least and am currently living on homemade rehydration solution and nutritional supplement drinks per my doctor’s instructions. (For mast cell patients in a similar scenario, I have ordered Orgain, which I have used in the past when I couldn’t eat. It is vegan, soy-free and organic. I have received excellent customer service from them in the past and they took my health issues very seriously. I generally try not to specifically endorse products but I think a lot of people in this scenario may be interested.) If this doesn’t calm things down, I will do elemental formula for a while, and then potentially TPN (IV nutrition).

Yesterday morning, I woke to a call from my disability caseworker “checking in” that I was going back to work on Monday. I didn’t laugh at her but it’s mostly because of how anxious these conversations make me. I informed her that I had been removed from my home on a stretcher less than two days before. I told her to call my mast cell specialist who agreed that I was looking at a months time table for returning to work, not weeks.

There was never a future for me that did not involve top to bottom GI failure. My GI tract is so dysfunctional from years of inflammation and damage that it has become a disease unto itself.

I knew this would happen. I just didn’t think it would be now.

Sick for a day

Derivative

I am not easily intimidated. I have been sick a long time. I am used to being around hospitals, doctors and sick people. I am used to reading lab work and pathology reports. I have seen a lot of people pull out of medical crises. I have seen my intestine attached to the outside of my body, emptied colostomy bags, packed my own incisions, accessed my own port. It takes a lot to scare me.

Waking up with a fever of 103.2 two days after dental work scared the shit out of me. It’s kind of funny in hindsight in a morbid way: infectious diseases microbiologist develops tests for bloodstream infections, gets bloodstream infection. But it wasn’t funny then. I am very even when I speak to providers who don’t know me because my life could literally depend on it. I was even that day, but it took a lot of effort.

I was discharged after a few days of antibiotics and continued them at home for another week. I called out of work, a rare instance of sick time rather than working from home, because I was so exhausted and winded that it was difficult to do anything. In 2014, when the shit really hit the fan, standing up was enough to make me sweat, my heart race and blood pressure drop. It felt like that again. Like anything but being in bed was too physically demanding and being awake was too mentally demanding.

In the days after discharge, I lay in bed thinking about deconditioning and POTS and anaphylaxis and what if I had to start all over again? There isn’t a word for what I was experiencing. If we had a word for the crescendo to blind panic, the choking and the blood pounding before you scream, that might be it. What if I got these nine months of improvement and this was it?

The first few days back at work were very hard, my blood pressure was low and my mouth still hurt a lot. I had appointments last week at the hospital and one of my doctors is pretty convinced that I had a true bloodstream infection that just didn’t culture because of the antibiotics. I slept most of this weekend. But things are coming back together.

This past year, it was easy to settle back into a routine, to prioritize certain things over the things I had always dreamt of pursuing. It feels foolish now to have done that. I cannot take for granted that the way I have felt is the way I will continue to feel. If I hadn’t been on antibiotics since the dental procedure, this story could have ended very differently, with my port being pulled and time in the ICU to treat a bloodstream infection and anaphylaxis and months of recovery.

Life is short. All important things are derivative of this. Every lesson is secretly the same.

Fragility

I have a bad tooth. It needs to come out. The original plan was to have it removed in an OR so I can get twilight sedation but my insurance doesn’t want to pay for it and I’m left with having to cobble a plan together myself. I called a number of oral surgeons and no one wants to give me anesthesia outside of an OR. So any kind of general anesthesia means OR, which means a several thousand dollar bill from my insurance. No dice.

I have had dental work with local anesthetic and it’s not ideal but it’s okay. I premed heavily and then it takes a day or two to squelch reactions. It’s not super comfortable but it’s not life threatening and fortunately my laundry list of past procedures means that I have got pain management down to a science. I called my doctor and he agreed that using local sedation is fine if I premedicate. He is very good at giving advice for procedures and talking to providers that aren’t familiar with me. Great. All systems are go.

I have been a patient at my current dental office for about half of my life. I call them and they schedule me to have my tooth removed. Around this time, my dental pain went from sucky and uncomfortable to my entire face and all my teeth hurt and the pain is making me nauseous. Then the long suffering secretary at the dental office calls me to tell me that the dentist won’t remove my tooth with local anesthesia. They also won’t fill the cavity to make it more comfortable until I can figure out how to get this removed.

I talked to the dentist at length and will spare you the gory details of our exchange. I now had to find someone who didn’t know me who would agree to remove this tooth with local anesthesia quickly because the pain was awful. My entire face hurts and I’m reacting and it’s painful to talk, eat and be alive, and I’m terrified it will get infected.

The dental office at my hospital eventually agreed to do it with a local on a day when my specialist will be on campus in case anything goes wrong. In two weeks. A filling would be the same wait. So I’m getting it removed in a week and a half and while I am medicating to deal with the pain, it still hurts. It hurts a lot. I have had bowel obstructions and several surgeries and a million painful tests and good grief does this tooth hurt a lot.

I am so much better than I was a year ago. I can eat solids and exercise and travel and I’m not constantly riding the line that demarcating when I need epinephrine. I have made so much progress. But damn if it doesn’t feel like I am one bad day from losing all these gains. One bad tooth, one obstruction, one flu, one slip on an icy sidewalk. It wouldn’t take much to be right back where I was. Almost nothing.

When I have described my body as strong, it has never felt like the right word. Enduring, maybe. Durable. Not strong. Things that are strong and robust can withstand damage and still work fine.

But some things are not meant to be strong. It is not a defect, but an intricacy. A byproduct of artisanal process of craftwork. Not a mistake.

All beautiful things are fragile in some way. Marble cracks, pictures fade, buildings burn, people change. Beauty is a moment, the coalescing of so many things to form this fleeting arrangement. It is the impermanence that makes things beautiful.

My body has survived impossible things. It has recovered. But it isn’t strong, even if I want it to be, and saying that it is because of one good year feels like a lie.

Ill fit

I haven’t been posting as much of my personal writing because I am working through a lot of things.  It is hard to think about and hard to write about.  2015 was an incredible and powerful year for me, in both good and bad ways.  It seems impossible that all of the events of 2015 are bound together by time.  It was exhilarating and triumphant and horrifying and so, so costly.

I am very good at minimizing and compartmentalizing, especially when it comes to my own health.  My health care is like business for me.  The actual process of managing my physical health is stressful and difficult but it has never been the hardest part of this experience.  That hardest part is all the things I feel like I lost. No amount of struggle can force those into discrete pieces to be boxed up and pushed aside.

The loss of those things hurts more now that I am more stable and things are less emergent. I am no longer living in one continuous crisis. It has given me some distance to reflect on my life and my health and all these plans I used to have.  I used to write about them every night before I went to bed, quick notes on moving toward a goal or long essays on all the things I wanted to do.  Then I went to sleep one night and woke up the next day and none of those things ever happened and I stopped trying to make them.

I think a lot about the life I used to have.  But for the years in between, it is, in many ways, not terribly different from the life I have now.  Every day, it feels more and more like I was never the person who wrote those journal entries.  I remember her, but that’s not the same as being her.  I don’t even know when she left.  A new season, then two, and suddenly it has been seven years since that girl even existed.

I’m trying to pick up these pieces she left and recraft these dreams, to remember the way they made me feel.  I am trying to fit into the space I occupied before I got sick and I just don’t anymore. It’s like forcing something into a place it doesn’t belong, hitting it hard with the flat of your hand until it splinters and your hand hurts.  Anything can fit if you hit it hard enough, but it will never be whole again.

February 29 was Rare Disease Day.  I wanted to write something positive because I’m a very positive person and because I am hopeful and I want people to be hopeful, too. But the truth is that every sick person has been traumatized by their disease and there will always be days or hours or moments when they feel that keenly.  We can overcome and live good lives but this history follows closely and it takes very little to run your mind over it.  Sometimes it is hard to get out from under that.

I thought all day about a story that could make people understand what it means to have a rare disease, to see what I see, but I don’t think that story exists.   There is no rare disease story, just like there is no systemic mastocytosis story, or Ehlers Danlos story.

There is only my story. So that’s the one I’m telling.

Achilles

When Achilles was an infant, his mother was told that he would die young.  She carried him to the River Styx, the dark water that separated Earth from the Underworld, and dipped him in its waters to make him impervious to harm.  Achilles grew up without fear of injury until a poison arrow landed in his heel, where his mother had held onto him many years before.  He died and became a warning – there is always a weakness, no matter how strong something seems.

I have an Achilles’ heel, and it is airports.

Since July 2014, I have travelled by plane to the following places: Seattle, Colorado, Orlando, Los Angeles, Hong Kong, Beijing, and Colorado again.  I talked to lots of people who are more intrepid travelers than I am and got their advice.  I talked to my doctors.  I got all the paperwork and all the notes. I organized everything and made sure I had enough meds, port supplies, ostomy supplies and safe foods in case we got diverted or delayed or cancelled.   I called the airline the day after booking tickets several weeks before travel.  They were always very courteous and attentive and assured me I would not have any trouble.

The problem happens at the airport.  Specifically, it happens at the check-in counter.  I always ask for a wheelchair to meet me at the counter because while I am certainly much more stable than I was a year ago, standing up, especially in one place, pulling heavy things, is not my strong suit.  So I get to the counter and identify myself and ask for the wheelchair.  Then, while we are waiting for the wheelchair to come, it happens.

They tell me I can’t bring on my two luggage containers of medical supplies and insist that they will make me gate check one, and also that my bag holding my infusion pump and medication WHICH IS ON AND ATTACHED TO MY BODY counts as my personal item and has to be stowed overhead.  So I can only take half of my medical supplies and the bag with a line pumping medication to my body has to go in an overhead bin that will close on the line.  And so it begins.

The last eight flights I have taken were with Popular American Airline That I’m Sure You Can Guess.  I like Popular American Airline for a few reasons: their seats are bigger, they understand that I have a legitimate need to have more space (to juggle IV meds), they eventually agree that it is impossible for me to stow my pump because it is attached to my body, and they have movies and Wifi.  I pay more to travel with Popular American Airline because once I am on the plane, I generally don’t have huge problems.  I expect to get questions, I expect for people to not know things, that’s fine.  But once we have a brief exchange, they agree that what I was told by their disability services people is accurate and I have a pleasant flight.

That is not the case with the people at the check-in counter.

I have been told many tales by the people at the check-in counter: that I cannot bring all of my necessary medical supplies onboard (which is not true); that I can only bring one medium sized piece of luggage with supplies; that I have to bring multiple small pieces of luggage with supplies; that I can bring one small piece of luggage and then the rest have to be in “compressible” bags; that I can bring one small piece of luggage and it has to meet the weight limit; that I can bring one small piece of luggage and it doesn’t have to meet the weight limit; and so on.  So I never really know what I’m going to get, and calling ahead of time never helps.  I get a different answer depending on who is behind the counter.  They eventually call a supervisor, and then the supervisor tells me whatever they happen to think, which is also inconsistent.  It’s always a nightmare, and for the last several flights, I have literally started crying within fifteen minutes of being at the airport.

No amount of preparation or education helps.  Popular American Airline will not give me a letter explaining what I can bring that I can show at the counter.  They cannot “keep notes about me” so that they have a copy of my fit to fly letter on file.  They will not put in writing that I can use the pump.  Best of all, everytime this happens, they send me an email that says that they are sorry that I did not have a good experience but that they “respectfully deny” that they violated any regulations.  I don’t call them everytime this happens because I know they don’t care.  They just automatically send me an email that is basically an enormous fuck you.

What I find really funny about this situation is that sometimes, the people at the check-in counter will tell me that the reason I can’t talk those supplies with me is because TSA won’t let me.  TSA is much maligned and I have to tell you that I have not had a bad experience with TSA since I started travelling again in July 2014.  They know what PICC lines, ostomies and ports are. They are courteous and efficient. I plan to get patted down and have my bags opened and my things and my person swabbed for explosives because these people are trying to make sure no one blows up airplanes and I am carrying large amounts of liquids, glass vials, syringes, needles, adhesives, medication bottles, an endless amount of pills, a clicking infusion pump, packets of cromolyn and a partridge in a pear tree (sung).  They are always very careful to be sure they don’t contaminate any of my line supplies or medications.  TSA is not the problem here.

So I get all excited to go on these trips and see people and do things and I premedicate and call and call and jump through all the hoops and then I get to the airport and within minutes, I am so frustrated that I am crying.  And then that’s it, I’m the girl who cries at the airport and you can never un-be that girl.  And it has gotten so bad that it makes me not want to travel.

In my heart, I have always been a traveler.  I have always wanted to get on airplanes and go places and see new things, even mundane things, even by myself.  Before I got sick, I would board planes with my iPod or Discman (I know, I’m dating myself here) and a small journal to write in.  I would write and listen to music while looking out the window.  I didn’t just like being in different places.  I actually loved the change of the environment, the little lights below at night, the reddening of the sky as the plane chased daylight.  I was a good traveler.

Being at the airport now is a reminder that my experience in the before matters very little.  It doesn’t matter that I used to be a good traveler, because now I’m just a crying woman who needs a wheelchair and wants to bring too much luggage onboard.  I have had some incredible, life changing victories in the last two years, but it has been hard won.  It takes such a toll on me, both physically and emotionally.

Last week, I went to visit one of my best friends in Colorado (hi, Priscilla!!!!).  I stayed for four days, which is pretty short for me, but I couldn’t take more time away from work right now.  We stayed over in Denver, hung out at her place in Summit County, went to Garden of the Gods and drove back to her place through mountain backroads.  I have been to Colorado ten times in the last nine years, and that drive home was the most stunningly beautiful landscape I have ever seen.  Purple mountains, blue skies, unblemished snow fields, no clouds.  So beautiful it feels like I am different for having seen it.

The day I flew home was one of the longest days of my adult life.  They right away started with you can’t take all this stuff on the plane, then there was a mechanical issue with the plane after we had boarded and we all had to get off and then they cancelled the flight.  One of the gate agents really put her ass into making sure I could get home that day and I got a seat on a direct flight with another airline that night.  By the time I got home, I was really in bad shape.  I literally couldn’t stand for more than a minute or so at a time.  Bad.

I want to be a traveler again like I used to be and my Achilles’ heel is airports and I’m so fucking sick of this shit.

 

The shadow edge

I was in the process of applying to medical school when it started to become obvious that I was sick. I chose not to complete the application process out of fear that I would be accepted and too sick to attend. I ultimately got much worse and would definitely have been too sick for medical school. As it turned out, I was sick for several years. And in the last couple of years, I have been too sick to do much of anything.

I am 31 years old. I finished school almost eight years ago. I have been sick for that entire duration. Somehow in my mind, being sick is recent, a brief interruption to my normal state. Eight years is not brief. I have now been sick longer than it took me to complete my undergraduate and graduate degrees.

In the middle of those years is the time when most people transition from one stage of life to the next. It is the time when you take fun vacations, go to parties, focus on your career, meet your significant other, marry. They achieve their earlier goals and move onto the next ones. They grow up, calm down and settle down.

I was sick for those years and never really made that transition. There is still a riot, loud and unyielding, in my heart.

I have dreams for 31, but I also had dreams for 25 and 28. When do you have to let them go? At what point do you not have enough time?

In some ways, it is easier when all of your dreams are washed away at once. It is harder to choose which dreams to lose. It is hard to accept that those years weren’t lost, but that they prevented me from achieving these things that are so important. Those years may prevent me from ever achieving some of them.

I feel a lot better these days than I have in a couple of years.  But now that I feel more functional, I find myself constantly taking inventory of life, of the things I never did and the things I might still be able to do, if I start right now.  It is overwhelming sometimes.  It feels like the shadow edge of hope.

I knew I would one day run out of time to do everything, that eventually pushing things into the future would mean they fell over the edge and disappeared forever. It just happened sooner than I thought.