The perfect medicine

I do not have a metaphorical list of things to do in life. I have a literal, physical list. I started it when I was 15 years old. I remember the noise the pen made on the notebook paper. (It’s hard to remember that I was once able to hear such noises). I remember carefully tearing the pages along the perforated edges of my spiral notebook. I folded it up and tucked it inside my journal.

In its first iteration, the list had over 100 things on it. Some of them were emotional (“fall in love with someone who loves me back”), some academic (“get a doctorate”), some simple (“paint my bedroom purple”), some about specific skills (“learn how to shoot a bow and arrow”), and others about experiences (“see the pyramids at Giza”, “swim in all four oceans”). One of them was to go to a Mayan temple. It was specifically written as “Go to Chichen Itza or a Mayan temple site.”

In the years that have followed, I have done many of the things on my list. I also periodically add to it. There are some things I will never do because they were linked to a specific timepoint or situation I never found myself in. I don’t mind. The list is a map, not an itinerary. It is the compass pointing to the true north of my life. It doesn’t mind if I sail around the bottom of the world to get there.

I have been in Mexico since last Sunday. It has been a very challenging week. There were major problems with my reservations and transportation and the staff have been frustratingly rude about correcting their mistakes. I have had some misadventures with my port and that was scary. (Fortunately, I have been on antibiotics for several days now and the port does not seem to be infected.) It was not exactly the relaxing week I was hoping for but I don’t think I’ve had a relaxing week in years so at least it wasn’t unfamiliar.

Yesterday, I got to watch a very dear friend get married on a beautiful beach covered by a warm, sweet wind as the sun went down. I got to watch my sister officiate the wedding and we were all excited to think that the next wedding we all attend will be my sister’s wedding next April. And today, after almost 20 years, I went to Coba, a large Mayan temple complex an hour from the resort I am staying at.

I was so excited to be able to do this. I was also scared. My life is an exercise in adjusting expectations. I have been let down so many times by this failing vessel my soul occupies. I would be crushed if I travelled all this way and couldn’t get to Coba.

My heart has been broken so many times by this body and the life it has imposed upon me. So many times I have felt like tiny pieces of me have been chiseled away along the lines of all these tiny spiderwebbing fractures. And most days I can cope with that and most days I like my life. But this was too important to me and I felt so vulnerable and so exposed. I was really scared that I would come so close and somehow miss this opportunity.

The weather was not cooperative. It rained a spectacular amount today. It took much longer than expected to get there because we had to drive slowly. It was the kind of rain that laughs at umbrellas and boots and ponchos. We were all completely soaked in a matter of seconds. But we were there. For an hour and a half, my family and I sloshed through mud puddles and negotiated the additional slipperiness of steps worn smooth and uneven long ago. My sister and her fiance got bicycles to ride to the biggest temple. My mom and I took a rickshaw to meet them there.

And then suddenly, emerging through the dense lush green of the jungle, there it was. We turned a corner and despite the special futility that is seeing things through wet glasses, I could see it. The largest pyramid, the one I had seen in so many books. The one I saw in an encyclopedia in seventh grade and never forget.

Cardio exercise is hairy for me under the absolute best circumstances and I avoid it as fiercely as I avoid undercooked egg whites. But I had made it so far and couldn’t leave without trying. I pushed down my fear and started climbing. It was wet and slick and hot. I kept my eyes on the steps and climbed, one hand on the rope strung down from the top, the other on the steps. If I turned around, if I looked at how high I was, if I thought about how easy it would be to fall, I would never have made it. I kept my head down and kept my eyes on the step immediately in before me. I moved forward and I didn’t look back. And almost 20 years after writing the entry in my list of things to do, I climbed to the very top of a Mayan pyramid.

One of my sister’s best friends is Buddhist. She was also in Mexico this week for the wedding. Last night, we chatted about living a good life with chronic illness. (She is a diabetic.) She told me that one of the leaders of her sect of Buddhism believes that for everything that can ail the body, there is a perfect medicine to cure it. Nothing can be done that cannot be undone with something somewhere in this world. Maybe it takes forever to find it. Maybe we never find it. But it is there nonetheless, waiting for us.

Maybe all those crystal slivers of my heart that I have lost were not really lost but scattered. Maybe this is the perfect medicine. To cross things off my list, to go to these places. To live your dreams when you are never even sure you will live until tomorrow.

To believe things will get better and that your life is good. That this life has value and so do you.

To move forward. And don’t look back.

 

 

Name your fear

Being chronically ill is an exercise in managing fear. There are so many of them and they all need attention in turn. You are afraid of the damage being done to your body. You are afraid of the damage being done to your mind. You are afraid of the damage being done to your relationships. And you are afraid of the damage being done to your life.

For me, none of these fears hold a candle to the one that looms largest in my mind: bloodstream infection.

Long before I learned about the intricacies of mast cell biology, I was an infectious diseases microbiologist. My first job out of grad school was developing rapid diagnostics for bloodstream infections. I spent thousands of hours studying pathogenic organisms like MRSA, VRE, E. coli, Klebsiella pneumoniae, Pseudomonas aeruginosa, and Candida albicans and learning how to find them as fast as possible. I learned a lot about how often these infections occur and the sepsis they are and how fatal they are. (Pretty fatal, in case you’re wondering). The science around bloodstream infections feels very much like my old stomping ground if my old stomping ground was a burned out car in a Mad Max wasteland.

I have a central line permanently implanted in my chest for the purpose of giving myself IV medications and fluids daily. I had my port placed in September 2014. For several months before that, I had a PICC line in my arm to give IV access. Having a central line massively increases the risk of bloodstream infection. PICC lines are generally considered riskier than a port but ports are not a whole lot safer if it is accessed all the time like mine is. The likelihood of a line infection is not insignificant. It is on my mind every day.

In the 3 ½ years I have had a central line, I have never had an infection. There are basically two flavors of infections associated with lines: local site infections, where the place that the line crosses through your skin gets infected by organisms on the skin, and line infections, in which the inside of the IV line is contaminated. Both can be serious but site infections are less serious. In many instances, a site infection can be cured by pulling the line and putting in a new one somewhere else. Line infections are so dangerous because the bugs inside the line get pushed into your bloodstream and pass through your heart. Pulling the line often does nothing and most people end up in the ICU for several days or longer.

I am a maniac about my line. I exert a huge amount of effort to keep my site sterile and immaculate. I spend a lot of time sterilizing the end of the line before I inject any meds or hook up an infusion. I am extremely careful when I dilute medications to inject. I use a checklist when I access the line to avoid contaminating anything. If I think there is even a miniscule chance that I contaminated something, I throw it all out and start over again. But the most important way I protect against infections is by not letting anyone who isn’t me touch my line. My home care IV nurse is the only person aside from me that I trust to touch my line. I avoid going inpatient or to the ER at all costs because there are so many more people and the risk of contamination skyrockets.

Despite all of this, I work myself into a frenzy a few times a year in which I convince myself that I have a line or pocket infection. (A pocket infection is a kind of site infection you see with ports, which are implanted under the skin). Naturally, these frenzies occur when I am traveling because otherwise they would be no fun.

Deaccessing the port means taking out the needle so that I cannot inject medication into the port. The port is connected to my bloodstream. Without the needle, the port is pretty impervious to infection. Putting a needle back into the port is called accessing. It is a sterile procedure and involves sterilizing the skin and then putting a sterile dressing over the needle. Like many mast cell patients, I have very sensitive skin. I react to the betadine and alcohol I have to use to sterilize my skin. (I have tried other sterilization procedures, this one is the best for me because I react much more with others). I also react to the adhesive of the sterile dressing, although it’s much better than the alternatives. (I use IV3000 dressings and many mast cell patients have luck with them.)

I have to deaccess my port to go swimming. If I go swimming every day, this means that I have to take out the needle and pull of the dressing every day. When I need to use the line again later that day, I have to sterilize my skin and put on a new dressing. My skin reacts badly to doing this daily. I often get hives and it’s hard to clean off the adhesive residue left by the dressings without using a lot of alcohol, which I also react to.

When my skin reacts like this, it doesn’t look that different from a site infection. It is red and itchy. It sometimes hurts. I sometimes get hives. It can make it much harder to figure out what’s actually happening.

I’m in Mexico right now. There have been a lot of hiccups on this trip but it is insanely beautiful here. It is a special place. It is also incredibly hot here so I have been swimming a lot. I have been deaccessing for 4-6 hours at a time. Yesterday, as I will removing the needle so I could swim, a little bit of white fluid came out with a few drops of blood and the needle. It kind of looked like pus. I spent the next several minutes pushing on my port and trying to assess for signs of infection with thinly veiled panic.

Seeing pus come out with the needle usually means a pocket infection, an infection under the skin around the port. But if you access a port while having a pocket infection, it can push some of the infection into the bloodstream. As I am heavily dependent upon using the port for IV meds and infusions daily, it’s not safe for me to not have IV access. After trying to collect myself, I called my IV nursing team at home. We talked through some scenarios and the likelihood of infection.

After some deliberation, I went to the doctor on staff here at the resort. I was very nervous that he would be unable to help or not want the liability. He ended up being fantastic. He ordered the high dose oral antibiotics my home team requested. He works at a local private hospital and was able to arrange someone to start an IV for me daily if the port did end up being unusable. Alternately, I could go to the private hospital daily and they would give me my fluid infusions and IV meds through the IV they placed.

After some more discussion, my home team felt it was okay to try and access the port that night if there were no more signs of infection (especially not getting any white fluid out when pushing on the port). If I accessed it, I could use it normally. If there were signs of infection, I would keep it deaccessed and stop using it until I got home. Then I would have an IV placed and we would discuss IV antibiotics at the hospital.

Last night, after several hours of deaccess and worry, I was able to reaccess my port. It is working fine and has had no other signs of infection. I’m still not sure what the liquid was and it’s possible it was the start of an infection. It is also possible that the white liquid was from a burst hive, or a precipitate formed by the betadine on my skin reacting with the water here, or some stray sunblock that hadn’t gotten cleaned off. Just something to keep things lively.

There are a lot of obstacles in the path of anyone who travels with major health issues. The fear of needing help and not having it readily available is the biggest one for me. Understanding all the ways something can go wrong is so often a hindrance. It is much harder for me to just take things at face value and not worry about it.

So I don’t really know what happened and I’m probably never going to. This morning, I was just grateful to wake up with a working port in a coping body in this beautiful, special place.

Unvacation

I used to pride myself on traveling light. It was a skill I cultivated through years of hosteling and backpacking. I travelled with 2-3 changes of clothes, basic toiletries, one towel, a journal, a book or two, a phone charger, a flashlight, a first aid kit, and a wallet. It all fit into a green backpack. It is remarkable how thrifty you can get with your belongings when you have to carry them around, when you unpack and repack it all every day to move to a new city. Even when I was older and visiting friends or staying in a hotel, I never brought much. It was a hard habit to break.

When I was able to start traveling again in 2014, this phenomenon resurfaced into a new form. I packed light on clothes and toiletries because I needed so much space for the massive amount of medication and medical supplies I had to bring with me. When I went to China, I brought a nesting set of three suitcases, a shoulder bag, and the backpack that holds my IV fluids and infusion pump. I packed three changes of clothes, one pair of shoes, a journal, a flashlight, a toothbrush, shampoo and conditioner, an iPad, a plug adaptor, an electrical converter, and a charger. I couldn’t fit anything else with three weeks worth of supplies and meds. I actually had to buy some more clothes and toiletries when I got to Hong Kong.

Having that much luggage – and heavy luggage at that – stresses me out. I can’t pull all of it around without someone else helping me. I often can’t lift it. I’m always worried I’ll forget something and not notice until I’m there because it is so much to pack and there’s much stuff in there to see what I missed just by opening and looking. I have checklists but it still makes me apprehensive.

I’m not the only one who feels like I pack way too much stuff even if it is all necessary. Airlines think so, too.

I have written prolifically about the trouble I have when checking in at airports. Every time, they want me to do or have done something different. No amount of talking to disability services or ADA lines has helped because the airlines give a lot of authority to the supervisor there when you present. It played out mostly the same way it always does. I cried. What I will add is this new fun fact: if you are wondering how to get the supervisor to stop treating you like a piece of shit and help you, the answer is to start filming. Her demeanor changed so fast I almost got whiplash.

The airline argued with me for so long that I almost missed my flight. Getting through TSA was a nightmare and much worse than usual. There was no time to get anything to eat or drink and I was literally the last person boarded because of how long the airline held me up. But historically my travel woes mostly resolve once I’m on the plane and I was still headed to Mexico so things were looking up. Some kind passengers helped me with my luggage so I could get out appropriate meds and get settled.

I landed in Mexico and got through immigration and customs without any trouble. But when I found the company that was supposed to transfer me to my resort, they had no record of me. I was very glad to be able to speak Spanish at that point because it took a lot of back and forth. They ultimately found that I was booked for the wrong date but agreed to just take me anyway. Great. I got into the bus with my millions of pounds of luggage and we headed to the resort about 45 minutes away.

So then I arrived at the resort which had my reservation listed as starting four days later and things got really exciting. I had to shell out $1400 to even get into a room while it was being sorted out or they were literally going to turn me and my rare diseases and 17 suitcases full of IV bags away and we would have to walk home through the jungle where it is 400 degrees and even the trees sweat. It was over an hour before they even agreed that I could HAVE a room at all. To say I was alarmed is putting it gently.

I figured that once I got into a room, my travel agent and the hotel would be able to sort this all out and I would get a refund. That has not happened. After a very stressful back and forth with the travel agent, I asked her to stop texting me and just let me know when I would get my refund. I explained about my health and that this situation was just too stressful and to please just let me know when it was taken care of.

She didn’t stop and even though I didn’t read the texts, it was the final straw. My port was deaccessed so that I could go swimming so I had to give myself an IM injection of Benadryl and steroids at the pool. I went back to my room to access my port and hook up IV rescue meds and fluids. Fortunately, I did not have anaphylaxis. The meds worked and I bounced back. I told her to stop texting me and just email me about the refund when it is ready. I blocked her number and went to go sit on the beach.

It has been a long time since I have been able to travel alone. I’m not really alone here (I came for a wedding so some of my friends are here, too) but I’m alone in the sense that I don’t have anyone with me most of the time. In my mind, this trip is sort of a test run to see if I could maybe travel on my own again. If it goes well, I could maybe try a short trip somewhere else on my own. I love traveling alone. I miss it a lot.

In science, when we want to see how well things work, we do something called latitude testing, sort of testing worst case scenarios to try and “break” the system. This is how you learn how far the system can be pushed before it stops working right. This trip has levied a pretty good attempt at breaking my system. It has been stressful and frustrating. My body is reacting to that. But I have safeguards built into my system and they are working. I had rescue meds right there. I was able to respond quickly and keep myself safe. I was in control in the way that I needed to be. I was stressed but not scared.

All the reservations/money nonsense aside, this place is stunningly beautiful. It is warm and breezy and the night air is perfect for walking. The chefs have been super attentive to my food allergies and I haven’t had any trouble with food. My minibar is stocked with Mexican Coke and my safe potato chips.

Things will work themselves out. Or they won’t. I’m sure I’ll be fine.


Postcards

I started collecting postcards when I was 14. My uncle died abruptly that year and I took a road trip with some relatives to visit his son several states away in Georgia. When we were getting ready to leave, my parents told me to send them a postcard. I spent an inordinate amount of time looking for (and not finding) postcards in every rest stop and 24 hour gas station between here and Savannah. I finally found some at a visitor’s center near Roanoke, VA. An obsession was born.

I have thousands of postcards now. I get a bunch anytime I travel anywhere, even if it’s somewhere I have been before. Even if I’m only passing through a state or country. Even if it’s just a layover. If I find out someone is going to a country I don’t have a postcard from, I am not shy about asking if they will grab me a few.

There was a long time when I was too sick to travel. I lost a lot of things in those years. Travel was one of the hardest. Planning trips had always been an escape for me, even if I were planning trips I knew I would never take. I would read guidebooks and research flights and destinations and places to stay. I would often take out my postcard collection and flip through them, a palpable connection to this piece of myself that had been removed by force.

My health stabilized in later years but there are still many places I will never see, places that are just too far flung to chance with my need for accessible medical care. I have tried hard to make peace with that. Some days are easier than others. It is still something I struggle with, a loss that remains raw even after so long.

In 2014, I flew to Seattle with my best friend to visit one of my other best friends. It was sort of a rematch. My previous trip to Seattle had suddenly turned into a clusterfuck when I suffered GI failure 3000 miles from home. So in 2014, I took myself and my PICC line and two pieces of luggage stuffed with meds and medical supplies to Seattle. And I made it there, and I made it through the trip, and I made it home. For the first time in a long time, I started to feel in control. Not really in control of my life or my body, but in control of something. Something I wanted badly, that was an essential part of me. The ability to travel.

In the year after Seattle, I honed my traveling with masto skills with some domestic trips. I went to Colorado, Florida, and California. In November 2015, after months of planning, I flew around the world and spent two weeks in Hong Kong and mainland China. It was exhausting and complicated and very stressful. But it was also amazing in a way that few things in my life have been. When I am having a super shitty day, I think back to the way I felt when I landed in Hong Kong. Or when I first saw the Great Wall of China rising before me as it emerged from an otherworldly fog. Or when I crossed the threshold into the Forbidden City. Just pure gratitude for being able to be there in that moment. And awe that I was able to figure out how to work around the incredible complexity of international travel with the need for daily IV meds, IV fluids, and ready access to emergency medical care.

I used to be adventurous in the more traditional sense. I wanted real adventure: hiking in the Himalayas, long boat rides down remote rivers, cliff diving, camping in Patagonia, watching the Northern Lights from a sleeping bag under the endless sky in Iceland. I will never be able to safely orchestrate many of these real adventures. But in a way, the disappointment of this is tempered by the fact that I have unwittingly uncovered a different type of adventure: learning how to game my body and my disease to let me take these bites out of the world.

This is my adventure. Figuring out how to fold my life up into complex origami shapes and walking along the edges, planting a foot in the space governed by my disease, the other in the space of exhilaration and dreams. I will never know the triumph of summiting Mt. Kilimanjaro. But so many people will never know the triumph of making it to another continent, of spending years to see a place you dreamt about, of eating and working and waking the morning after a day you thought would kill you.

I do not enjoy the experience of having mast cell disease. I like things about my life but this is real life and not a symbolism-ridden novel. If I could snap my fingers and find myself occupying a healthy body, I would do it in a heartbeat. Being sick amplifies everything but that means every good thing is amplified, too. Every time I am able to figure out how to experience something or go somewhere safely, it is such a victory. It is infinitely more satisfying than if I never had to worry about my health. And I think that’s worth something.

I’m flying to Mexico in a few days for the wedding of a family friend. I have never been to Mexico. I started preparing for this trip six weeks ago, started packing two weeks ago, and now it’s almost here. I am currently having an obnoxious episode of “normal people sick” (as distinguished from “masto sick” – I have a nasty cold). A few years ago, I would have been panicked that I wouldn’t recover in time to safely travel. But after all the work I have put into this trip, it just seems silly that something like a bad sore throat and wet chest cough could get in my way. It will be fine. My doctors have cleared me and I’m not concerned.

In three days, I will be in Mexico. In nine days, I will have seen Mayan ruins, swam in the Gulf, and warched my friends get married on the beach. And in ten days, I will be home. With postcards.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 18

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

27. Can mast cell patients travel? Can they fly?
• This is very individual and dependent upon your personal health situation, your ability to manage bad reactions on your own, where you live and where you want to travel. I have been fortunate enough to be able to travel widely through exhaustive preparation.
• You should always talk to your care team when you are thinking about travel. You must have a detailed understanding about how to recognize when you are headed for trouble, what you should do if you get into trouble, and when you should pursue emergency care.
Always carry rescue medications, your emergency protocol on provider letterhead, and a sheet listing your diagnoses, daily meds, rescue meds, and any special precautions. List over the counter medications as well.
• Make sure that all of your medications are legal in the country you are traveling to. Importantly, diphenhydramine (Benadryl) is illegal in some countries.
Get a fit to fly letter detailing what medications you need to bring onboard with you on letterhead from your doctor.
Call the airline directly to describe your needs. If you need to use medical equipment during the flight, tell them when you call and have the model number/ serial number ready.
• Also notify the airline if you need them to refrigerate medication for you.
• If standing is a trigger, or you have difficulty lifting luggage or carrying your bags with you, ask for a wheelchair to meet you at check-in and take you through the gate. It is my experience that when bringing a lot of medications through experience, it is easier to do this when you are in a wheelchair being escorted by airport personnel.
Identify safe foods at your destination. Many countries do not allow you to bring food in from another country. However, you can often bring solid food through the security to have on the plane.
• I premedicate heavily and many other mast cell patients who regularly fly also find that helpful. Speak with your providers about what protocol works best for you.
• Flying is unbelievably dehydrating. Hydrate well in the days before flying, the day of the flight, and while flying.
• Keep in mind that if the flight crew is uncomfortable with you flying, they can refuse to let you onboard. Emphasize that it is safe for you to to fly and that you have a fit to fly letter. If you are not able to manage a bad reaction alone, please do not fly alone.

For more detailed reading, please visit these posts:

How to travel with mast cell disease

Indiscretion

I am not terribly discreet about my health and the accompanying body differences. It is not in my nature. When I was growing up, I would get dressed for school in the living room in front of a window that provided an unobstructed view for anyone passing by. It took me a year to put up blinds in my current apartment because I just couldn’t be bothered. The idea that someone could see me naked is really not something that I particularly care about.

This lack of concern has extended to my day to day management of my health. This means that my health issues are pretty visible, even to people who don’t know me. My port is accessed all the time and I don’t usually wear clothes that hide it. When I had a PICC, I never wore long sleeves for the express purpose of covering the line. While many people didn’t know what I had under my clothes, they could certainly see that there was a bulge on my abdomen where the ostomy bag was. I take medication in front of other people all the time, including IV meds, sometimes in public. I sometimes need to infuse fluids during the day and so then I am walking around with a backpack holding a pump and an IV bag trailing a line connected to my port.

Also, my hair is bright red and I have distinctive glasses and dress like a 60’s housewife. Blending into a crowd is not really something that is going to happen for me.

I made a decision a long time ago to be as transparent about my health as possible in all areas of my life. During the years before diagnosis, and for about a year after, my friends and family understood in a general way that my health was not great. I was fairly functional and at that point didn’t require a lot of help to manage my day to day life.

In the winter of 2013, that changed. I crashed so hard that in the span of a few weeks I ended up unable to stand for very long, or exercise, or eat most foods, or clean my apartment, or run errands. After a couple of episodes in which I got out of bed and literally fell on my face from low blood pressure, it became obvious that I could not manage my life on my own. I was mostly unable to leave my apartment.

So I told everyone. I told my family and friends and work and pretty much everyone else I interacted with. By doing so, I was able to create an insular environment that was largely safe for me. Venturing outside of that bubble was inherently dangerous for me.

In the last couple of years, I have gradually gained more stability and more independence. I travel a lot now. In the last two years, I have been to Seattle, Colorado, Florida, California, Maine, Hong Kong, Beijing, Colorado, Maine again and Florida again. I’m currently in Naples, Florida.

Travel was a big part of my life and identity in my adult life. When I got sick, it was easily the thing I missed the most. It wasn’t even really that I wanted to go somewhere as much as I wanted to be able to go somewhere if I decided. The anxiety associated with being unable to just book a trip and go created a weird sensation of claustrophobia. I was trapped. And by traveling now, I am no longer trapped, but I am less safe.

I have written a lot about the difficulties encountered while I travel. I actually didn’t even realize how often I have written about this until yesterday when I was reading through old posts on the blog and on Facebook. I pretty much always run into trouble getting my boarding pass, despite many attempts to mitigate this ongoing problem. I sometimes have trouble even getting an airline to let me onboard the plane because some employee made a decision that I don’t look healthy enough to fly. Onboard, I often encounter trouble because I have to keep a bag with meds and an infusion pump with me at all times because the IV bag and pump are attached to my body.

And then of course there are the people who just don’t like that I’m sick. You know the people. The ones that don’t actually know you, but who make snide comments or stare.

I flew to Florida on Saturday. For the duration of that flight, I was connected to an infusion pump. The woman next to me was staring and rolling her eyes pointedly which seems awfully stupid since she could just ask me what it was if she wanted to. Two hours into the flight, I diluted a med using a needle. She finally said, “You know, it makes me uncomfortable that you’re doing that.”

I responded, “You’re going to be a lot more uncomfortable if I start going into shock,” and then pushed the med and reconnected my fluids.

Any time I venture outside of this bubble I built for myself, I accept the risk associated with a naïve and sometimes hostile environment. I find it incredible that in 2016 these issues are still present. I am clearly dedicated to educating people about mast cell disease and seize the opportunity to do so when it presents itself. But situations like this have really driven home for me that often people have already decided how they feel about what I am doing or what I look like before we even interact. In some instances, teaching them about my disease won’t help. And sometimes, it makes things worse.

There is also this sticking point: that despite the fact that I don’t try to hide my health issues, I still have a right to privacy. I don’t mind discussing my port or why I’m bright red if people ask, but I have a choice. There should not be an expectation that I disclose my private health information just because I don’t look like everyone else.

Our stories as patients are our greatest weapons against ignorance and fear about our diseases. They are our greatest assets in making the world safer for us and people like us.

But they are still your stories. And telling them is a choice.

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.

 

How to travel with mast cell disease

My travel tips:

1. If you stopped traveling for health reasons, talk to your health providers when you want to start again. If you would receive emergency care at another hospital, it’s important to discuss exactly what that should look like.
2. Get fit to fly letters that detail what medications you need to carry onboard with you and emergency protocols on letterhead from your doctor. If possible, get multiple originals (with original signatures) rather than an original and copies. If traveling abroad, it is helpless to have them notarized.
3. Always carry rescue medications, emergency protocol and “Greatest Hits” sheet listing your diagnoses, daily meds, rescue meds, and any special precautions. You should do this everywhere, but it is especially important if you are traveling. If you take over the counter meds, they should be listed as well.
4. Make sure that it is legal to transport all of your medications to the destination. Some medications are illegal in certain countries, regardless of whether or not it is for your personal medical use. Of note, diphenhydramine (Benadryl) is illegal in some countries.
5. Find out if your medications are available at your destination. If they aren’t, identify an alternative.
6. Call the airline directly to describe your needs. Many airlines have seats with more space (bulkhead) that are preferentially given to people with medical issues so you have more room for meds/supplies. If you have need to use medical equipment during flight (like an infusion pump), tell them when you call and have the model number/serial number handy. Airlines will refrigerate medication for you if you tell them in advance.
7. If you are triggered by standing for long periods of time, lifting your carry-on, walking, etc, ask for a wheelchair to meet you at check-in and take you to the gate. In my experience, if you have a ton of meds/liquids with you, going through security is easier if are in a wheelchair.
8. Get to the airport early. I always go at least an hour before recommended. If you have made requests for assistance (like a wheelchair), you will not be able to check-in online.
9. Expect to have to tell your story at the check-in counter to at least one employee and their supervisor. Even with the notes added when you called the airline, you may still get push back when you check in. This most often occurs in the form of restrictions applying to your carry-on.
10. Remind them that you are allowed to bring extra luggage onboard if it contains medication/medical supplies. I infuse while flying so I have to wear a backpack at all times that holds the bag attached to my port line. Sometimes, they will count this backpack as one of my carry-on items and say I can only bring one more piece aboard. Again, you are allowed to bring extra luggage aboard if it contains medication.
11. Be reasonable with the extra luggage. Only bring aboard what you really need. When I flew to and from Hong Kong, I had a carry-on packed with all my meds in labeled containers, supplies to access/dress my port, and three days worth of IV bags and supplies to spike and remove air from IV bags. This would be enough that in an emergency where everything else was lost, I would have enough IV meds/supplies to fly home.
12. Pack medical supplies in hard shell luggage so that things don’t get crushed or broken.
13. Pack everything you need for the day in a separate bag and keep it in your purse. This is much easier than getting the luggage down in flight.
14. Bring safe foods. Do not expect to be able to eat on the airplane if you have severe food issues. You are allowed to bring some foods through security.
15. Expect that going through security will be time consuming. It will be. If you have medical implants/devices like central lines or ostomies, tell them before you go through the metal detector.
16. They will definitely pat you down, open your luggage and swab everything for explosives. Show them the letter stating that you need to bring these medications/supplies onboard.
17. When you arrive at the gate, ask at the counter to board early.
18. If you are sitting in the bulkhead row (no seats right in front of you) and you have an infusion pump/backpack, tell the flight attendant when you board. What happens next depends on the flight crew. Sometimes they will want you to switch seats for take off and landing since you can’t stow the backpack under the seat. Sometimes they will let you hold the backpack like a baby. Sometimes they will let you buckle it into the seat next to you.
19. If your pump will be on during take off and landing, if the flight attendant asks about it, tell them that you spoke to the airline previously and that it is medically necessary. It is safe for the pump to be on during take off and landing.
20. Hydrate like it is your job. Flying is seriously dehydrating and can really exacerbate GI motility issues.
21. I premed 24 hours and 1 hour before the flight with steroids, diphenhydramine, ranitidine and montelukast, just like for before surgery. I am most reactive during take off and landing, so I am careful to premed with enough time for the drug to be active during these times.
22. If my flight is longer than the window of these medications (3-4 hours), I medicate again an hour before landing. Please check with your doctor to determine what is the best medication protocol for you to provide additional coverage for flying.
23. I infuse IV fluids while flying as it helps stabilize my blood pressure.
24. I take extra diphenhydramine (Benadryl) for at least two days after flying. I also do a short taper to get down to my baseline steroid dose (I have adrenal insufficiency).
25. I take extra stool softener for a few days before flying and a few days after to avoid worsening GI issues from dehydration.
26. Call the hotel before you book to discuss options for food and cleaning supplies, and anything extra you may need, like a refrigerator or safe. If you will be eating primarily at the hotel, speak with the Food and Beverage manager to identify some safe options for you prior to arrival.
27. Plan around your need to sleep. Flying is very triggering and you will likely need a lot of sleep to recover. Plan some days (or at least parts of days) with empty blocks of time for you to nap and rest as needed. About 1/3 of the days I spent in Asia were spent sleeping or awake but in bed.
28. If I am traveling domestically, I often ship supplies/meds to my destination so I don’t have to worry about carrying everything/luggage getting lost. You can ship medication to yourself in the US as long as you are the end user. For example, when I visited my friend Christen, I sent a package to Lisa Klimas c/o Christen [Christen’s last name]. Having done this with multiple operators, my best experience has been with the USPS. They were half as expensive as UPS or FedEx and the only operator to deliver the package on time (I ship overnight because I have refrigerated meds).
29. Discuss with your doctor whether it is appropriate to bring antibiotics/antivirals with you on your trip in case you develop an infection.
30. Identify a hospital at your destination in case you have an emergency.
31. If possible, have a copy of your doctor’s letter translated into the local language.
32. Try to be patient. Some days I am just so tired of fighting about shit with airlines but if you can stay patient, the likelihood of things working out better increases. It’s one thing to let a sick person fly, it’s another thing to let a sick and hysterical person fly.
33. If the flight crew is uncomfortable with you flying, they can refuse to let you on the plane. This is where having a fit to fly letter is very important. Emphasize that it is safe for you to fly and that if you have a severe reaction, you are capable of managing it on your own. If you are NOT capable of managing a bad reaction alone, I urge you not to fly alone.
34. Wear a watch that displays local time at your place of departure so that your med schedule doesn’t get blown up. If the time difference is substantial, you may need to take an extra med dose in the first 24 hours to align your nighttime meds with your new nighttime and morning meds for your new morning. Check with your doctor on how to manage this.
35. Have fun! Enjoy your trip.

River stones

The day I was diagnosed, I left the hospital holding a piece of scrap paper with notes all over it. I occasionally come across it again while looking for reports in my massive collection of medical documentation. The paper is soft along the folds, but the ink is still bright. Words jotted down haphazardly surround a crude drawing of a mast cell heavy with granules. Words to explain my disease and its accompanied wreckage.

These words meant more than too many mast cells, too much activation. They meant the pain and stress of being sick. They meant all the things I had lost. They meant fear and loneliness. They meant desperation and need for validation. They meant that this was real and that meant that it wouldn’t go away. The words were arbitrary. They had no power on their own. They had power because of what they represented in my mind.

In the weeks that followed diagnosis, I said the words out loud when I was home alone. I turned them over in my mouth until the edges were smoothed, the jaggedness smoothed like a river stone.

I arrived in Beijing on Tuesday afternoon. It was cold and raw there, the kind that makes every movement feel heavy and dully painful. The city was overlaid with soft fog, fluffy and moist. It looked sleepy. Our wonderful tour guide apologized for the poor visibility but I liked it, this ethereal dressing. In fairy tales, that’s where magic happens.

On Thursday morning, we went to the Mutianyu portion of the Great Wall. We walked up to a cable car that delivered us into the heavy mountain fog. We made a short climb up slick stone steps to reach the wall, visible only in glimpses through this wet cover.

The shrouding was so complete that I could almost believe that if I stepped off the wall into the fog, I just might disappear. We were high above the world. We were in the sky.

There was a sharpness to walking through the mist in this place that had borne witness to eons of man. I can’t find the right words to express how it felt to walk along the Great Wall. If let down was a positive feeling, it might feel like that. I was awestruck by this experience. It could not have been more amazing for me. It feels like putting down something I carried for so long that my body began to accept it as its own. It is the knowledge that after so long, I will never again see the Great Wall for the first time because I already did.

I saw the Great Wall after years of doubting I would see it at all. I did this impossible thing. I wanted to cry tears laden with the salt of all the impossible things I had hoped for in that place where it seemed the very mountains were crying, too. Hope is the only way forward, but it can be so, so heavy.

Our tour guide explained the function of the Wall, its amazing length and structure. It was designed to prevent invaders from returning, watchtowers manned with sentries. It surprised me that the mountains themselves weren’t enough protection without the wall. I’m not sure that the wall was ever any better than the mountains alone. But the people believed it did and that made them better. Maybe it gave them hope.

A lot has changed since I was diagnosed. The words I smooth are different now. They are still painful. But if I think of the coolness of the stone, the feeling of another world encroaching, the realization that dreams come true, maybe when I say these words, they can mean that, too.

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Just before waking

For most of my life, I have seen things in that creeping inertia toward sleep. Figures made of vibrating inkiness would move towards me until I screamed and jumped in the moment before we touched. I would shake my head from side to side and rub my eyes like an incredulous cartoon character while my pounding heart slowed.

The shapes I saw never existed outside of that thin slip of time that bounded waking from sleep, but logic is not enough. It didn’t matter that I knew that these were hallucinations. The panic was real.

From the moment I decided to visit China, I was panicking. I fretted about bringing medications, transporting IV bags, getting medical notes, dealing with the airline, the weather. Everything was a variable I could not control. The mental invention I could muster to frame worst case scenarios was impressive. Every obstacle brought fresh waves of anxiety until I believed I may never get there. I worried and worried and worried.

By the day I was set to fly to China, my fear had reached fever pitch. What if the airline staff wouldn’t let me carry my supplies onboard? What if I need an epipen? What if my port clots off? What if I can’t reaccess my port? What if all my IV bags pop? What if I have a severe reaction during the sixteen hour flight?

I had actual nightmares that I would arrive in China to discover all of my medication bottles were empty. In the half slumber just before waking, vignettes of my illness destroying this trip paraded before my eyes.

Late on November 2, I went to Logan Airport with my new matching luggage and checked in for my flight to Hong Kong. As anticipated, there was some trouble with getting approval to bring my critical supplies and meds as my carry-on luggage. Lots of calling supervisors and discussions. At last, a supervisor walked over to us. In his hand was the printout summarizing my health conditions and necessary accommodations. I could bring this small piece of luggage onboard with me.

Things went much better from that point. A wheelchair was brought to transport me to the gate. TSA gave me no trouble. I boarded the plane first to get medicated and settled. A flight attendant came over, holding a copy of my medical approval form.

“It says you have ‘mas-to-cy-tro-sis’, this is right?” she asked warmly.

“Yes, that’s me,” I said, fighting with my infusion pump.

“This word does not mean anything to me. How can we help you during this flight?”

“I’m fine, I can handle everything myself.” And I was fine and I could handle everything myself. I manage my disease everyday. There was never anything to fear.

After we took off, I laid back and fell asleep for nine hours. I flew over the North Pole and landed in Hong Kong without any trouble.

I have been in Hong Kong for five days. I am very tired. I am very sore from the flight. I am reacting mildly. It is hot and hazy here, the air like droplets of lead weighing everything down. I can eat almost nothing that wasn’t prepared at the house and need to nap every afternoon on top of sleeping 10-12 hours a night.

But I am here. I made it to Asia. I have seen the Star Ferry and the Peak, the bustling central area and the sun blazing through the fog over the South China Sea.

The nightmare is not that I would be sick in China because I am sick and will always be sick and being in China won’t change that. The nightmare is that I would wait so long to be “healthy” that I would never experience the blinding joy of going to the other side of the world. The nightmare is that my disease would prevent me from living a life of wonder and meaning.

You don’t need a good reason to pursue your dreams. It doesn’t have to be logical or convenient. You don’t need a plan. You just need to decide that you want things to be different and believe that they can be.

In a season when it feels like I have lost so much, I can no longer be controlled by these nightmares. And even when I’m queasy and sore, I am happy in those quiet moments just before waking.