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my feelings

Back together

This winter, when my entire city struggled under walls of ice and snow, I found myself dreaming about the beach. In my mind, I stood by the water’s edge, air warm, breeze strong off the ocean, sun warming my skin. I imagined myself looking and seeing the scar where they closed my ostomy site.

It was such an impractical dream that I didn’t really hope for fruition. I am essentially allergic to the beach – sunblock, sunlight, cold water, heat. And of course my ostomy site would never be closed. It was not even an option then. I never thought it was possible.

Three months later, I arrived at the hospital to have surgery that would reverse my ostomy and reconnect the two segments of my GI tract so that stool would pass through the rectum. It felt surreal, like at any time I would find a man behind a curtain, pulling strings.

They took me right in and every person who spoke to me knew that I had mastocytosis and that I needed premeds one hour before the procedure. They went over everything with me again to make sure it was mast cell safe. “You are the boss,” one nurse told me. “You live with this all the time, just tell us what you need.” I have waited years to hear these words, for providers to believe that.

They administered my premeds and the anesthesiologist came to give me an epidural. It was painless. They taped the line with my safe tape and lay me down. They pushed some midazolam and fentanyl and wheeled me into the operating room.

“I need to tell you something about my skin,” I said suddenly, jerking awake from my semi-unconsciousness. “My skin is really reactive and hives easily, so don’t think that it’s a sign of anaphylaxis.”

“We know,” the nurse said, nodding reassuringly. “It’s in the note you gave us for your chart. We know about your disease and we will be careful.”

And the first time in a long time, I believed it. Everyone in that room understood at least the basics of mast cell disease and our special operative concerns.

I lay back and they put a mask on my face. I breathed deeply and woke up a few hours later in the PACU.

I had an epidural with a bupivacaine PCA pump that I could push as needed to numb my abdomen. I had a hydromorphone PCA pump that I could as needed for additional pain management. I couldn’t feel any pain. It was amazing. I still reacted to the anesthesia with my typical nausea/vomiting but they were prepared for it. Frankly, it was so pleasantly different from my last major surgery that it seemed like a small price to pay.

About twelve hours after surgery, my GI tract started moving. Last time, it didn’t move for five days. This time it was moving and pushing things in the right direction. It was the best possible indication that this had worked. I couldn’t believe it.

The following day I was up walking around. (If you are having abdominal surgery and have mast cell disease, ask about an epidural. It honestly was the lynchpin here and made the pain so manageable so my mast cell reactions to pain were really minor.) I was eating the day after that. I had a couple of reactions but they were easy to control because there were orders to administer Benadryl and Pepcid IV as needed, as well as steroids if the reaction was severe.

I felt so safe. The nursing care was so good I wrote a letter detailing how amazing they were. They all asked me about my disease and diluted my Benadryl and they were just generally fantastic. Instead of spending seven days fighting for things I needed, I spent seven days managing my pain and reactions in an environment with many professionals who cared and understood that I was not just a crazy person asking for crazy things.

I came home a few days ago to my kitchen table covered in presents and cards from the mast cell community. It was so humbling. It was like Masto Christmas. There were books and movies, a huge piece of amethyst, stuffed animals, cute like knick knacks, funny cards, touching cards and pictures drawn by the masto kids. It was the perfect punctuation for this experience. I try to hold things together and to be strong at the broken places, and you guys just pulled everything together for me. I will never forget this kindness as long as I live.

One of the very difficult things about mast cell disease is that we so often have to fight for things we need to be safe. We are always ready for a fight, always on edge. We wonder if it we can keep this up. We are so tired. We just want to be safe. We want others to help us be safe.

This experience was the culmination of years of educating medical professionals and of them receiving education on mast cell disease elsewhere. This time when I said I needed Benadryl, they just got it for me. No fighting. I am the boss of my body.

I write a lot about how I see the world and how I interact with it as a mast cell patient. But in my private writings, I write about how I want the world to be, how it should be. Two weeks ago, I went to the hospital for surgery and during my stay, I realized I was living in that world. Maybe it was just for a little while, but I was there. I could hear the universe whispering to me, “You can do this. Look how far you have come.” So I’m ready to fight again if I have to, because I saw this other reality, and it was real and safe and we can make it like that everywhere if we try.

So when time goes by and it gets hard again, and I’m exhausted from advocating, I’m going to remember this. I’m going to remember this win. I’m going to remember that this safe place made it easy for me to heal and rest. I’m going to remember that this fight is how we make the rest of the world safe for all of us, not just for me, at one hospital, one time.

I’m going to remember that this tired, sick body made this incredible thing possible, and when it seems like I can’t do any more incredible things, I’ll remember that I achieved this, and that I can achieve so much more.

And when you guys are tired and sick of fighting, promise me that you’ll remember that this is possible, and that we’re all in this together. When you think you can’t do it anymore, just extend a hand to the void. We will be there to hold it and put you back together.

 

 

The opposite of being alone

Last Thursday morning, I flew to Los Angeles for the long awaited meeting with my mastsister Addie and her family. I arrived at Logan Airport two hours before my flight. I have flown seven times in the last year so I am overly familiar with the routine. I carry on one suitcase with medical supplies and clothes, a laptop bag with my computer and my backpack that holds my IV supplies and infusion pump. I carry a letter from my doctor stating I need these things when I travel; aside from the fact that the large fluid bags are always swabbed for explosives, it is never a problem.

I was deposited at the gate almost an hour before my flight. Anytime I book a flight, I call the airline to reiterate that I need to infuse while I fly. They always seat me in the first row so there is more room for people to navigate past me when leaving the row. I have been advised that since the IV line is attached to my body, the FAA views it the same way as an insulin pump, and that I just have to hold it in my lap while we take off and land.

The gate agent came over and began asking questions about my backpack and IV fluids. I told him that it is attached to me, showed him the bag and pump, provided my letter. He and his supervisor made several phone calls and peered at me from behind the counter while talking about me in hushed voices.

The man came back over and asked if I had a fit to fly form. Most of the flights I have taken this year were with this same airline; I took two flights with them just over a month ago. I have never been asked to provide this form and would have gotten one had I been told to.

They continued calling people. I was now the only person not boarded and getting pretty irritated. I walked over to the counter and asked them what was going on.

“If you need IV fluids, then our medical team says you can’t fly,” he told me.

I explained that I had done this several times in the last year and had a note from my doctor that says “Lisa needs the following medications on her person when flying” which would obviously not have been proffered if I couldn’t fly. I explained about my disease and that I have lived with it for a long time and was fully capable of handling any symptoms. They decided I could board the plane but stopped me feet from the plane. The pilot came out and asked further invasive questions about my health and about my IV fluids, which had already cleared security. (In case you’re all wondering, the answer is that no, my IV fluids are not explosive.)

They let me board and the entire population of the plane stared at me while the crew discussed whether or not I was, in their estimation, healthy enough to fly. With their exchanged looks, I felt my personhood being stripped away. All that was left was a complication.

I keep thinking about that other life, before I looked sick enough that a gate agent felt entitled to ask me deeply personal questions about the state of my health. I did so many things. I went to a lot of places. I was able, physically and mentally. And now I’m… not able? Unable? I don’t know what I am, but whatever it is, I’m not the same.

It’s hard to live in the present sometimes. It’s hard not to compare everything I do to a previous iteration that came before I got sick. I can feel myself walking backwards, covering every step I took to get here, trying to find the moment when my fate was sealed. I wonder if I had known back then what was wrong if it would have made a difference. I wonder if I would still be this way, if I would still be unable.

I landed in Los Angeles six hours later without so much as a mast cell hiccup, my infusion pump clicking along happily. Addie and I compared ports and medicines and discussed Frozen at length.  We camped at Newport Beach this weekend and met up with some other masto friends. Ten people with mast cell disease on a beach by the bay, looking for dolphins in the evening light. Ten people with mast cell disease swimming and accessing ports and taking Benadryl and listening to coughs and eating smores. It was calm and breezy and safe. It was the opposite of being alone.

Me and Addie

 

The comedown

Last fall, I talked with my doctors about removing my rectum. I have had colitis for years.  It hurts and bleeds all the time.

In January, my surgeon scheduled surgery to remove it. This would eliminate all possibility of reversing my ostomy. I was fine with that.

In February, my GI specialist told me I could get a subtotal colectomy and reverse the ostomy.

A week later, my surgeon told me he thought it might be better to just remove the entire colon.

Last Thursday was the two year anniversary of placing my colostomy. My surgeon called me that night to tell me that he had run into my GI specialist and they had together decided to reverse the ostomy and not remove all of the colon because if they are wrong “they can’t put it back”. This removes some colon but for complicated reasons I’m too frustrated to explain right now, there is a rock solid chance that I will end up exactly where I was two years ago before I got my ostomy. A place I swore I would never be again. He offered that if it didn’t work, then we would remove the rest in another surgery.

My hospital time after placing my colostomy is pretty hazy. I remember waking up in the recovery room and pulling the blanket, straining my neck to see the stoma. A nurse ran over and pulled the blanket up; she didn’t want me to see it until my surgeon was there. I watched her walk away before I looked again. It protruded about an inch, was pink and puckered, easily visible through the clear ostomy bag. “Like a rosebud,” my surgeon said. Yes, exactly like that.

The first time I stooled with it was a wonder, this painless relief. It didn’t last, but it was wonderful while it lasted. It hurt, but not as bad as my rectum had hurt before. Not as bad as the agony of not being to go to the bathroom, of constant distension, of your insides wrenching to no effect. No, not that bad, not like that.

I chose to get a colostomy. It’s not a choice that all colostomates get; some people suffer a terrible injury and wake up to a bag around a surgical opening into their intestines. I chose to get a colostomy, and I live with that choice every day, and every day I would say to myself, having this is a good thing. I believed it most days, if only to avoid arguing with myself. It is an act of self preservation, this sort of aggressive acceptance of your body.

Right up until the second my doctor told me he felt I could reverse the ostomy, I had never even considered it. How could I have, when before was so bad? No, I never did. This was part of my choice; I understood when I got it that it would be forever.

Right up until the second my doctor told me he felt I could reverse the ostomy, I never wanted to reverse it. But as soon as he said it, I did. I wanted it more than anything I’ve wanted in a long time.

Now I am looking at the very real possibility of ending up in the position of eventually not being able to stool again without serious intervention. At the very least, not without another surgery in the future. And that’s really stupid, it’s really stupid to decide to do this, because I’m so literally tired of surgery and procedures and shots and IV meds and this fucking port and its stupid dressing and I’m so literally tired of being sick right now that all I want is to not do this anymore. I don’t want to do this anymore. Because I have four feet of trigger living inside of my body and now I’ll never be able to stop cleaning up puke from my toilet every day and reacting to the smell of alcohol when I hook up IV fluids every night and taking the mountains of pills I push around every morning in the pillbox with a resigned finger. I am allergic to my own body and how can I ever get better when I’m literally allergic to myself?

I just want to get better and I’m never going to. But I still want it, I want it more than anything and knowing that I’m never going to doesn’t make me want it any less.

Two years ago, I woke up and saw my stoma, and for many days after that, I told myself it was a good thing, if only to avoid arguing with myself.

Four months ago, I was fine with having an ostomy forever and now I’m getting rid of it and I wish they had never told me I could.

All these plans I have made seem farcical now because they depend on me not reacting to being in pain all the time and that is only possible if I’m not in pain all the time.

Dreams are great and all, but the comedown when they are smashed is fucking hell.

Loose tooth

In the fall of my 16th year, a girl walked up behind me as I was getting off the red line at JFK/UMass. She grabbed my shoulder from behind and punched me in the mouth. I hit her back and she got back on the train as the doors closed. It happened in a matter of seconds.

A few minutes later, I realized my mouth was bleeding. I ran a finger along my bottom teeth and one in the front wiggled. I was so mad. It bloomed white hot inside of me, this rage. I balled my hands into fists, my fingernails digging into my palms. I called my mother from a payphone and went to the dentist.

It doesn’t bleed anymore, but it has been loose ever since. Not very loose, but loose. I pushed it back and forth with my tongue as I rode the train home today, on a different red line train, thinking about anger.

I was always very independent. It wasn’t a lifestyle or a decision; I just am that way. I started making my own money in my early teen years and was working fulltime by 16. I moved out at 17 and that was that. It had nothing to do with my family – we are close, and I wasn’t leaving to get away from them – but I like to be myself, making my own decisions. I like being responsible for myself.

And also, if I’m being honest – I like it that way because I am weird and kind of unpredictable. I like things a certain way. I either care a lot about something or I don’t care at all. I am a very extreme person. I like to interact with people on my own terms. And yes, because I’m sure someone is thinking it – I have some mad scientist behaviors, where I like jump out of bed in the middle of the night and realize what we should be measuring to really figure out if some cellular process is happening, and that is weird and disruptive to people who aren’t me. I have flow charts and index cards taped up next to my bed and I recently drew out the Krebs Cycle at 2am, tracking carbons to see if I could still do it. My wackness is useful, but it’s big and hard to miss.

Since we’re talking broadly about the ways in which I am weird, I recently found out that it’s not unusual for people to feel like they are underqualified for their positions even when they are.  This is called Imposter Syndrome.  I feel like this pretty much all the time.  I logically understand that I know a lot about mast cell disease, but I still feel like the universe has made some cosmic mistake in handing me this huge audience of cool people.  When I say that I really thought five people would read this blog, I am not being self depricating.  I really can’t believe how big this has become and it makes me feel like I walked out onto a stage with no pants on.  So there’s that.

Independence gives me freedom to deal with my emotions, which can be very volatile, and sometimes for reasons I don’t understand. Being able to retreat to a safe environment alone is how I cope with things that stress me out. When I don’t have that option, it is much harder for me to function effectively.

At the beginning of 2014, I was physically such a mess that I was incapable of doing basic things on my own. I was living alone. I couldn’t make my bed. I couldn’t stand up long enough to do the dishes. My blood pressure was really unstable and I was trying not to pass out all the time. And the pain was bad, too.

I am extremely fortunate to live close to friends and family that I have good relationships with. And because I am a phenomenally lucky individual, these people help me even though I am sick in a way that is sometimes visceral and gross and cranky in a way that is unbecoming of an adult. I have made some big gains in the last year, and these have been won in large part because of the things these people do for me.

I almost never drive anymore and I don’t always feel well enough to take public transportation, so people have to drive me to work/the hospital/to get groceries/insert necessary life activity here. My father comes over every morning to feed Astoria and bring her down to his yard so she can run around. My parents have to wake me up every day because alarms don’t usually work. Every single time someone wakes me up, I am enraged. It’s not logical and I wish so badly that I didn’t react that way, but I do. It scares me and so I wake up every day in a state of panic. And that means I am immediately in a bad mood.

I don’t know how obvious this is to people who know me online, but my interpersonal skills are not always great. I do not understand a lot of social subtext. I am socially awkward by nature. About ten years ago, I picked someone I thought was graceful and kind and modeled my behavior in certain situations after them. I do a good job of anticipating situations before they happen so I practice what I will say and do ahead of time. But I am not good at social interactions naturally. It is a learned skill. And when I am very frustrated, it becomes more of a struggle.

My normal course of action when I am upset would be to just shut off my phone and retreat to my apartment for a few days of being alone. Except I can’t do that because people will think I’m dead and unfortunately, they could be right. I don’t have the luxury of being by myself for days because if something bad happens to me, I need someone to find me. How shitty of a realization is that.

And I depend on people to help me with basic life things, and they deserve for me to be nice and not be an asshole. Also I deserve room to have feelings and deal with them in a way that is helpful for me, except I can’t do that right now. Hopefully not forever, but maybe. I dream of going away somewhere by myself for three days.

And it is embarrassing and it makes me so mad but if my poor parents don’t wake me up in the morning and I miss my pills, I’ll be calling the good folks at 911 to take me to the Brigham before nightfall. So I can’t just go be mad for a few days and get over it because it is not safe for me. It makes everything much more stressful than it needs to be, for me, and for all the people involved in my care.

I feel like if I could ragequit one thing in my life, I would feel better. I realize that sounds dumb, but if I could just like change ANYTHING or get rid of SOMETHING, I think I would feel less frustrated. But there’s literally nothing I can change and still be safe. I can’t change anything or do anything different than I am right now and still function.

I miss independence. I might miss it more than anything else. I might miss it more than not pooping into a bag.

So for now I’m just trying to get through every day without being an asshole to everyone I care about. In the meantime when I get angry, I wiggle my tooth and hope it doesn’t fall out.

 

 

 

We are Boston

It’s cold in Boston today, and damp and grey; the sort of unredeemable weather Boston is known for. I read the forecast from my iPhone as I drank my coffee this morning. I knew I should dress warmly, but it felt wrong to wear fleece tights and boots in April. I pulled on my blue tights with stars and crescent moons, slipped my feet into warm weather flats that don’t support my floppy ankles. Dressing for warm weather is a sort of hopefulness we Bostonians force upon ourselves – even if it doesn’t come to pass, at least we know we tried.

It was sleeting when I got off the train at Longwood, pebbles of ice bouncing off the pavement, cast aside by passing cars. My legs and feet were cold; I rubbed my fingers together to warm the tips. I put my head down and walked fast to the closest hospital entrance, running through a held-open door under the carved words, “The Peter Bent Brigham Hospital”.

People come from thousands of miles away to be seen here, at my local hospital, Brigham and Women’s. I was born in this hospital. Out of towners call it “Brigham’s”, but anyone from Boston knows that Brigham’s is an ice cream store. No, this is “The Brigham,” because it used to be two separate hospitals, the Peter Bent Brigham Hospital, and the Boston Lying In Hospital, where the discipline of obstetrics was first practiced as a medical science. The Lying In Hospital was a women’s hospital, and when the two merged, it became Brigham and Women’s.

I know lots of these arcane trivialities because I have lived in Boston all my life. I am a Bostonian; I am from Boston. This is my city, and it is part of me.

I rubbed my calves together while waiting for the E line train, my music in my headphones loud enough for a Deaf girl to hear. As I stood up to board the approaching train, I realized it was snowing. I climbed aboard and paid the fare. I folded myself into the smallest shape I could make and sat in the first empty seat, the one closest to the driver. I pulled out my phone and opened the browser. I navigated to CNN, read the banner in bright red.

“They found him guilty,” I said to an E line train car full of strangers. Everything stopped talking and looked at me; they knew who I meant. It is April 8th and snowing in Boston, and Dzhokhar Tsarnaev was found guilty of all thirty charges in relation to the Boston Marathon Bombing.

The day of the 2013 Boston Marathon was warm and sunny. I was babysitting my friend’s daughter that day and I had walked her over to my mother’s house to run around in the yard. I carried the baby into my mother’s living room, where the tv showed live coverage of the finish line. As I sat the baby on the sofa, the bombs exploded.

In the beginning, there was some speculation that this had been a gas explosion. I walked the baby home to make her dinner, watching the muted news from another room as I fed her chicken nuggets. There were early reports of explosions at the JFK Library, which later turned out to be an unrelated electrical fire. I texted, emailed and called everyone I thought might be near Boylston St.

Within a couple of hours, it was obvious that this was a terrorist attack. I packed a bag full of the baby’s things and my father drove over to get us. It didn’t seem like the time to be alone with a toddler.

The news coverage was harrowing. It was uncensored and so graphic and so bloody. The insides of ruined legs, shorn blood vessels, shrapnel. And people who ran to help, regular people picking up the injured and running with them to safety, regular people pinching the ends of veins and holding wounds closed with their bare hands. Not just regular people. Bostonians.

I didn’t think it would be worse the following day, but that was before I knew my mother would call me in the afternoon. “They are showing the names of the people who were killed, and the girl… who died… it’s Krystle Campbell,” she said. I was holding the baby, same baby, on my hip. I packed her things up again and we went back to my parents’ house to think about Krystle Campbell and how she had been murdered by a bomb in our city.

One of my father’s best friends when he was growing up was Billy Campbell. They both grew up and had families; my father had two daughters; Billy had a son, also named Billy, and a daughter, named Krystle. Krystle was my friend when I was a little girl, when we were both little girls together. We spent most warm weekends together for several years when we were kids, swimming in the lake, riding bikes on dirt roads in the woods, sitting by campfires on summer nights. We went to each other’s birthday parties and watched fireworks together on the Fourth of July.

We got older and started doing different things and lost touch. Suddenly it was April 16, 2013, more than half a lifetime later, and Krystle’s face was on the news and on the internet and all I could think about was that she used to be really proud of the streamers she had on the handlebars of her bike. And that that same little girl with the streamers lived for another twenty years until one day when she stood at the finish line of the Boston Marathon and someone killed her and two other people.

Two nights later, the entire city watched the press conference in which they released the pictures of the Tsarnaev brothers. Hours later, an MIT police officer was shot and killed. I knew right away it was connected. I don’t know why I assumed that, but I went to sleep that Thursday night feeling like I might wake up to a very tense situation. I was not wrong.

By Friday morning, residents were being asked to shelter in place and to stay off Boston streets to assist the police in apprehending Dzhokhar Tsarnaev. News crews broadcast images of Faneuil Hall, the Boston Common, Kenmore Square, the Esplanade – all still, completely vacant.

That night, Dzhokhar Tsarnaev was apprehended, found hiding in a boat in a backyard in Watertown, a mile from my grandmother’s house. And I was happy. I was really happy because two days later I went to Krystle’s wake and hugged her parents and her brother and thought about her bike streamers and I was really happy that they had caught him before her family had to say their final goodbye. I was happy that he wouldn’t be able to blow up anything else in my city and that those four people were the only ones he would be able to kill.

If I could point to any one quality that defines Boston and its people more than anything else, it would be the ability to keep going when bad things happen. We are not people who give up. We are not people who let things get to us. We are ordinary people who run towards the sound of explosions in case people need help. We are police officers who chase terrorists through city streets while they throw homemade bombs at us. We are citizens who shovel off the Boston Marathon finish line in the middle of a recordbreaking snowfall in memory of those who died there. We are runners who minutes after finishing the marathon run to Mass General and the Brigham to donate blood to explosion victims. We are first responders who ensure that every person who made it into an ambulance survived their grievous injuries. We are medical professionals in world class hospitals who saved the lives of 264 people in a matter of hours. We are Boston.

The day of the Boston Marathon the year after the bombing, the spectator turnout was great. I never doubted it for a second. Because this is Boston and that’s what we do. Because fuck terrorism. Because fuck Dzhokhar Tsarnaev.

Today is April 8th, and it’s snowing in Boston.  Dzhokhar Tsarnaev was convicted of murdering Krystle Campbell, Martin Richard, Lu Lingzi, and Officer Sean Collier, and injuring 264 other people.

 

 

Love and rainbows

A friend of mine died yesterday. We never met in person, and shortly after we began talking, she found out she was dying. We met through the mast cell community, but she was living with something far more insidious – a rapidly progressing, heritable form of ALS. She died a little over a year after being diagnosed. She is survived by her husband and young son, and many close friends and relatives.

I found out that she was dying yesterday through Facebook. She posted herself that it would be her last day, as she had chosen to invoke Oregon’s Right to Die. I scrolled through all the supportive posts on her page, all the pictures of her with her close friends, recipes she had left for her son.

I learned a lot from her about grace and how to die a good death. Her openness about her illness, and about the ways her body has failed her personally and those in her life in a larger sense, has been a constant source of solidarity for me. She truly embodied the fact that you can love your life and be truly alive even while your body is becoming incapable of sustaining life. She really taught me that life has very little to do with the things you can do and more to do with feeding the relationships you have. I am grateful to have known her.

Every day, I see articles and posts advocating for people to “turn off the screens” and “connect for real”. If it’s not in front of you, if you can’t touch it, it’s not as worthy of your attention, it seems these people think. If you have a conversation via text message, it doesn’t mean as much as one across a table. One of these posts was in my Newsfeed right below Sherrie’s post that was leaving this world today. I shook my head.

These people who write these things don’t know what it means to have a rare disease. They don’t know the loneliness you feel every day surrounded by people who don’t know what it’s like to live in a body that can go into shock without any provocation. They don’t know the overwhelming sense of belonging you feel when you find someone online like you. They don’t know that having someone say, “I understand, I’m the same way,” in a group online can sustain you and validate you just as much as any in person interaction ever will. It is connecting for real, and it’s not less because it happens online.

Sherrie believed that when she died, she would go back up the rainbow she slid down when she was born. She surrounded herself with rainbows, and it became a metaphor for her larger experience. Some weeks ago, after a few difficult days, she wrote the sentence, “The rainbow is calling me.” I shivered when I read it. I can’t believe that the courage and surrender embodied in these few words are less important because I didn’t hear them in person. That’s not how the world works.

What we are doing here, in this community, matters. Supporting each other and understanding each other matters.

When the harder days come, I will remember Sherrie and that life has very little to do with our bodies. It has to do with love and rainbows.

I still live here

I flew home from Florida today. I am feeling pretty beat up. I had an amazing time and regret nothing, but I need to recover in a serious way. I need rest and IV fluids and soft, safe foods. Probably for several days.

My immediate reaction to this thought to be repulsed. I don’t like the idea of spending days in bed, even if I need it. I make so many judgments about my body and what I think it should do. I sleep too much. I don’t sleep enough. I need to exercise more. I need to do yoga every day. Every day, all day, I judge my body and its abilities, a ceaseless undercurrent to my more complicated feelings about being sick.

Why do I do that? Why do I compare every day to the day before? Why does every aspect of my life have to be measured against its previous self?

I judge my body so harshly sometimes. It is too weak. It is too fat. It is incapable of adapting to change. But sometimes I am struck by how utterly amazing my body is in the larger context of my life. It may react while flying through the air at hundreds of miles an hour but it let me ride roller coasters a few days ago. And really, that is amazing.

It is astounding to think how much I could achieve if I just stopped comparing my body to what I think it should be. Because the fact is that every time my body overcomes a reaction or a trigger, it is the result of the convergence of thousands of complex reactions executed in the name of self preservation. It is a miracle it can still recover after all this time.

I am alive. I live in this body. It might fight me, but I still live here. For the first time in a long time, it doesn’t feel like my body is filled up with nausea and bleeding and pain. It feels like it’s filled up with me.

Not a sad story

About a month ago, I had finally had enough of the oppressive snow wasteland known as Boston and I booked a trip to Florida. I told my masto friend I was coming down and we chirped excitedly about plans and what to do and all of those vacation things. It is no secret that my life has been generally frustrating recently so it seemed like this would provide an appropriate escape.

We made tentative plans for everything in the way only two people with mast cell disease can and generally derped out with excitement. We went back and forth about meds and supplies and safe foods. We decided to go to Disney.

Disney is one of my favorite places and a place I haven’t really had time to explore in several years. It also has an excellent reputation for accommodating health issues (including the very complex ones) and food allergies. We figured we would spend a couple days there, but I didn’t have high expectations for how much I would be able to do. Warm weather is a welcome change given the winter Boston just survived, but I don’t do well in heat, humidity or sunlight, especially when there is a lot of physical stress (like walking or standing for long periods of time). So I pretty much just hoped for the best in the same way I always do. A bad day at Disney is better than a bad day anywhere else.

I flew out of Boston on Thursday. It went pretty smoothly, with the exception of one woman who saw me get out of the wheelchair to walk into the bathroom. When I walked to the sink to wash my hands, she said, “You should be ashamed of yourself, there are people who really need those.” My reply was blistering and ended with, “People like you are the reason people like me kill themselves.” She was stunned to say the least.

Aside from this 90 seconds of unpleasantness, everything else was great. I touched down in Orlando around 6:15 on Thursday night. My friend Nikki picked me up and we checked into our room at the Port Orleans – French Quarter at Disney. It was so pretty. I know all Disney properties are pretty, but I liked this one a lot. We went out to a really nice, allergy safe dinner at a nearby hotel.

The next morning, we medded up and headed for Epcot. I LOVE Epcot. The only thing I wanted to do there was go to all the countries in the World Showcase. We got some (allergy safe) food and made it to all the countries before it started pouring. We covered our (accessed) ports and ran for the bus back to hotel.

It was a little hairy with gummy dressings and symptoms from the sudden temperature change, but we took meds and handled it. We took a nap back at the hotel and headed over to Magic Kingdom around 8. We went on the Haunted Mansion, It’s a Small World, Space Mountain and the new Seven Dwarfs Mine Ride, saw the fireworks and caught the end of the Electric Light Parade. We got back to the room around midnight and crashed hard, but in that exhausted way where you can’t sleep.

We had originally only booked two nights at Disney because we are crazy people who overestimated our physical capabilities. I figured that if we wanted to extend, it would be possible, even if we needed to switch hotels. I didn’t realize it was the start of Florida school vacation. We had called the Disney reservation line several times on Friday and they kept telling us nothing was available. Around 3am, I figured I would search online for available rooms since I wasn’t sleeping anyway and there was a room available at French Quarter! So I booked it and then we could not have to worry about waking up early to pack and also lack of sleep is one of my worst triggers so I had been worried about that. We got really lucky and slept in before heading to Animal Kingdom in the afternoon.

I have never seen a lot of the things at Animal Kingdom before so I was really excited. We went on the safari and saw lots of savannah animals, like giraffes, lions, zebras and hippos. We had booked fast passes for some rides so we did a lot of running around. (I should probably mention here that running is not something I do or tolerate well.) We went on this Mt. Everest roller coaster which was SO MUCH FUN (side note: at this point I learned that if you have a port and are on a roller coaster going backwards, it will feel like your port is pushing through your chest wall. It was really funny, when we started going backwards, both Nikki and I put our hands on our ports at the same time). We went back to the hotel and napped for a while and then took the ferry to Downtown Disney to get some food and watch Insurgent.

I was thoroughly fried by this point, and in that super uncomfortable, muscles hurt, about to react/actually reacting, nausea/vomiting space that I really hate. I was nauseous pretty much the whole time, but it was getting worse. I slept really late the next day and met Nikki at the MGM park, which I had also never seen in its entirety. We saw the Indiana Jones show, the Great Movie ride, a really cool stunt driving show and the Star Wars ride. At this point I was feeling the liquid courage effect of Benadryl so we waited in line (in the shade) for an hour for the Aerosmith Rockin’ Roller Coaster (which is one of my all time favorite roller coasters). It did not disappoint. Then there was only a short line for the Tower of Terror so we did that, too.

So, to summarize: two mast cell patients (who have had multiple surgeries, require regular IV meds and semi-regular epi, and have complicated food restrictions) went to Disney for three days, saw all four parks and Downtown Disney, ate food they didn’t prepare themselves and through the use of naps and liberal application of medication/IV fluids, were able to see/do literally all of the things they wanted to. LIKE FUCKING BOSSES.

Now we are at Nikki’s farm outside of Ocala which is very farmy and very beautiful. It is so calm here (except when the dogs and the pigs fight because the baby pig wants them to play with her, but still). I am recovering from the visceral adventures of Disney and feeling very glad that I came.

I try very hard to depict my life as realistically as possible, the good and the bad. I am in a place in my life right now where my life is hard a lot of the time and so that is what I write about. It’s not always my reality, it’s just my reality right now.

Everyone has hard things in their lives. I don’t think that being sick is any harder than losing a parent or a difficult divorce. It’s just different, and because my particular illness is unusual and uncommon, it seems worse to people. People say things to me sometimes, about how sad it makes them that I’m so young and so sick, or that I need a colostomy, or that I have a port, or whatever. They think my life is sad or tragic. My life is neither of those things.

I think sometimes that it’s easy to get stuck on how hard things are and how upsetting it is that you will never have your old life again. But we have these bright spots, and you can choose to elevate them in your mind so that they wash out the hard things, at least for a little while.

Don’t pity me, or people like me. This is my life, and it’s not a sad story.

 

Disney

Horizon

The last couple of months have been really stressful. Several of my work projects are all requiring a lot of attention right now. I am trying to iron out some details around MastAttack and make plans for the future. I live in the grey bleakness of New England in the midst of a record breaking winter. I am having some setbacks regarding GI function and pain.

And of course, I am having surgery soon. The amount of feelings I have about this surgery is surprising given the fact that I have always expected to have it. I don’t know. I guess it just seemed further off. The horizon seems so far away until you’re standing on the edge of the world, about to fall off.

Bowel surgery when you have mast cell disease is a complicated affair. I have to get buy in from all the relevant specialists and they all have to agree on a plan. I have to schedule surgery when everyone is in town and not taking vacation in the near future. I have to arrange care (nursing and otherwise) for weeks after I leave the hospital. I have to finish up several work things before they operate. I want to get some things lined up for MastAttack before I go.

My surgery was scheduled for April 28. I saw my surgeon this week to go over everything. He is not convinced that removing all of my colon is the best move. I am going to repeat some motility testing. Specialized testing generally takes weeks to get scheduled. Which would literally give us the results days before my scheduled surgery date, and that’s cutting it a little close for me.

I scheduled all my testing, then called my surgeon’s secretary. I rescheduled my surgery for mid-May. I am frustrated that there is still disagreement so close to my surgery date, but I understand why. We can’t just look and see what happened to the last twenty people like me who had their colons removed. There just isn’t anyone like me.

Part of why this whole production has been stressful is because I saw this coming a mile away. Needing my colon removed is not a surprise. We discussed removing more of my colon when I had my surgery in 2013 (I still have about 70% of my colon).   We weighed the pros and cons then, so I feel like having a similar conversation two years later shouldn’t generate so many questions. But things change, and my body has changed, and I have changed, as a person. What I want now is not the same as two years ago.

I thought pushing back the surgery would make me mad, but it really didn’t. It was a relief. I immediately felt calmer. It gives me time to make decisions without pressure. It gives me time to take some time for myself and focus on the things I care about.

If the amount of messages I have received are any indication, the weight of my life in recent months has been apparent to my readers. You guys are fantastic. You are so sweet and kind and respectful of my time and my feelings. I really feel so privileged to be part of this thing we are all doing together.

It has not escaped notice that MastAttack is turning into a much larger undertaking than I could ever have anticipated. I think some people are worried that I write these posts and answer questions out of a sense of obligation. A few weeks ago, I took a week off from the blog. I didn’t research or write anything about mast cell disease.

But at the end of the week, all I wanted to do was write posts about mast cells and diabetes. Not because I felt like people would be upset if I didn’t. Because I wanted to write it in case it was helpful. And because I like doing this.

In the last few months, this amazing thing has been happening. I am getting questions from people that are very nuanced, that show a really good understanding of the biology involved. Some of these questions are coming from people who have progressed a long way in their understanding of this disease. They are questioning me and bringing up findings from papers I haven’t read or correcting me when I get sloppy with the details. It is so cool. We are getting somewhere. This is getting to be bigger than me. And that was always the point.

I’m going to tell you guys a secret. I don’t want to be doing this in ten years. I don’t want to be writing articles or posts or reading literature constantly. In ten years, I want all this information to be available in a concise, easy to digest form for anyone to use. I want so many people to know everything that I know that I become obsolete. It’s starting, and you’re all part of that.

Along those lines, it’s time for me to get some help with all of this. I’m taking some people up on offers to help out, and will be asking for help with specific tasks in the upcoming months. If you think you might want to help, feel free to message me on FB or send me an email. There will be more details in future posts.

As for me, I’m feeling decidedly less stressed than I have in a while. All of my work stuff will either get done or it won’t, and all of my blog stuff will either get done or it won’t.   I’ll have surgery and I think it will help. And if it doesn’t, it doesn’t. The risk of ending up with a permanent ileostomy is scary, but not trying to remove a huge source of inflammation and live without an ostomy is scarier. You can’t be afraid to try.

In the meantime, I’m taking some time to relax before this next stage of my life begins. I’m going to Florida to visit a dear friend (and Disney!) later this week. The week I was supposed to have surgery, I will be going to California to visit Team Addie, my mastsister Addison and her family. And deciding to do those things felt warm and peaceful. It is exactly the right medicine for this weariness.

So I guess what I’m trying to say is that I appreciate all of your support. And I appreciate all of you individually more than you know. Every time I see someone jump in with the right answer or a message of support, I am honored to be part of this. And I’m so thankful and touched by your messages of concern and support. It’s nice to have people to catch you once in a while.

Sometimes things are hard, but everything’s gonna be okay. Okay, or better. It’s like my guarantee.

 

Wayward

It is getting to be time to organize my life in anticipation of several weeks of recovery after surgery. I spend a lot of time writing out instructions on how to live my life. When to pay bills. What pills to take. What medical supplies to order. I revise and update crucial documents, slide them into a folder in my filing cabinet. Every important thing about me reduced to some typed words on so many pages.

I can’t be alone for weeks after surgery. The risk of anaphylaxis is too high. One of my best friends took charge of arranging who will stay with me, when and for how long. I have known most of my close friends for the majority of my life. We grew up together, and will grow old together. We have shared so much, all the ebbs and flows of time. And now I’m sick, and we share that.

It is so much to take care of someone like me, with all of my complications. It is something that can only be done out of the most selfless kind of love. When I told my friends that I would need surgery again, they immediately volunteered their time and energy to help me. It is painful to see how readily they offer to be with me during the hardest times of my life.   It makes me feel so much love that I don’t think my heart can take it.

I found some old pictures yesterday, a whole bunch of us in face paint and costumes half a life time ago. It is hard to believe that we were ever so young. It is hard to believe these are the same people who show up over and over to remind me that I am loved. They put me back together, every time.

I have been so fortunate to have people who love me to the point of bending their entire lives to work around the ill fit of my disease. There is no one in the world luckier than me.

When I first got sick, I could never have imagined it would go on so long. I could never have imagined that I would live this way forever. I could never have imagined all the ways I would be made strong by these people.

I didn’t choose this wayward path. But since I am on it, I couldn’t have found a better group of people to travel it with.