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PTSD and Medical Trauma

On the Tuesday before Thanksgiving in 2009, I had an emergency appointment with my neurotologist.  “You have borderline profound hearing loss in your left ear and moderate to severe hearing loss in your right ear,” she said, showing me the audiogram.  I knew it was bad.  I could barely hear anymore. 

“We can try transtympanic steroid injections, do you want to try that?”  I couldn’t understand speech and all my music sounded weird.  I wanted to try it.  I would have tried anything. 
An hour later, I was in a procedure room curled up on my side.  They put a cone in my left ear and numbed my ear drum, which hurt a shocking amount.  Then they punctured my ear drum and injected steroids into it.  I watched it on the tv, the needle withdrawing threw the hole, the fluid spilling out behind it.  It felt like having water up my nose, but in my ear.  Once the steroids were injected, I was temporarily deafened, even loud sounds heard only by the vibrations in my chest.  I lay still for thirty minutes, then rolled over and did the other ear.
I got five injections in each ear drum over a three week period.  I never regained any hearing in my left ear.  My right ear retained some hearing, though what was left fluctuated heavily for years.  I had several hearing tests over the next few years.  Every time, it was nerve wracking and terrifying, even though it was painless and easy.  I eventually realized I was reacting to my ears being touched.  I could no longer handle having things put into my ears without having a visceral reaction. 
I underwent a lot of invasive examinations, tests and procedures while trying to identify what was wrong with me.  I often had things inserted into my body for medical purposes.  After diagnosis, I had more procedures and surgery.   I got bad news a lot.
A couple of years ago, I was having a lot of anxiety, to the point that it interfered with daily activities.  One of my doctors commented that I probably had PTSD.   “The whole process of finding a rare disease is traumatic,” he said.  I have to agree.  Once I realized what was happening, it made perfect sense.  I deal with it and it’s mostly not a problem anymore.  Sometimes though, it comes back.  When I was in the hospital in May, a resident argued with me about using epinephrine and I started hysterically crying.  I knew someone from the immunology team would address this issue shortly but the lack of control brings me right back to the stress of trying to convince doctors I am sick.  I function and am not generally anxious but you can only ever get so far from it.  When you are chronically ill, you are only as removed from these feeling as your next medical event. 
Johns Hopkins did a study a few years ago and found that PTSD lasting at least two years is common in people who have been in the ICU.   1 in 3 patients requiring ventilation has PTSD.  When you have surgery or an accident, you are often treated with powerful drugs by people you don’t know without thorough explanations.  The medications often have psychiatric effects, and patients in comas often report dreaming of fires and having paranoid delusions upon awaking.  The whole experience is terrifying.  For people like me, we have these experiences often, sometimes several times a year. 
If you have flashbacks of medical procedures, hate going to the doctor or panic at the idea of going to the ER, you are not alone.  I think because these events are part of our daily lives, we forget how long reaching the effects can be.  Seeking and receiving treatment for chronic illness, even under the best circumstances, has the possibility of being traumatizing.  It is additionally complicated for people who are chronically ill because we cannot avoid the experience that traumatized us as we need ongoing care.  The reality is that we can traumatize ourselves over and over. 
People experiencing PTSD often have flashbacks, nightmares (of the event or not) and physical responses to reminders of the event (sweating, nausea, rapid heartbeat, emotional distress.)  They often avoid places or things that remind them of the traumatic event.  They may not be able to remember the trauma fully or at all and feel detached from and disinterested in things and relationships they used to enjoy.  They often feel a “sense of limited future” in spite of evidence to the contrary, meaning they think they will die young, never get married, or otherwise have a short and unfulfilling life.  They often have difficulty sleeping, have outbursts of rage, feel jumpy and are hypervigilant. 
Cognitive-behavior therapy can be a helpful tool for patients with PTSD.  Medications can help, but therapy to address the underlying trauma is crucial.  If you think you have PTSD, please seek help from a mental health provider.  This stuff is hard enough without being scared all the time.

Show me how big your brave is

I have never thought of my life as being particularly terrible.  It’s hard and it’s complicated, but I don’t think it’s bad.  Like I have to ship 20 lbs of medical supplies and IV solutions on ice to the other coast but I get to go to Seattle and have a great time.  Complicated.  Not bad. 

I ran into someone at work today that I only see once a month or so.  I caught him up on my recent symptoms and general medical happenings.  “You seem to be dealing with it very well,” he told me.  “I suppose,” I replied.  I never really know what to say when people say that to me.
I thought about our conversation on the train ride home.  I thought about how my life must look to other people.   It must look overwhelming and scary.  It might look a little sad. 
People tell me sometimes that they don’t know how I do it.  I mean, yea.  Me either, some days.  But really, it’s not like that.  I didn’t choose this life.  I just have it.  If you woke up with a chronic illness, you would do all these same things, too.  There is no choice involved.  You do what you have to in order to survive.  A lot of the time, that means ignoring all the ways in which my life is unlike anyone else’s.     
There are days when I feel the weight of my illness in every muscle fiber, every thought, every intention.  And sometimes on those days, all I can do is take medication and sleep, the pain and nausea and exhaustion too much to be productive.
But some days I think about these people who think that I’m brave and think that maybe I really am.  I get up and put on a pretty dress and twist my red hair into a knot and sing along to Rancid while I put my makeup on.  I go to work and eat even though I know it will make me puke and walk outside even though the sunlight makes me feel like I’m wilting.  I see my friends and go out and enjoy my life.  When I can finally take pain medication and crawl into my bed under my heated blanket, I feel like I accomplished something, for all of us. 
On these days, my bravery shows in my happiness, I suppose.  It shows in the fact that even mast cell disease cannot stop me from enjoying my life.  And I never really thought about it, but that is a choice.    

Third spacing

The human body essentially keeps fluids in two spaces called compartments.  The first compartment is inside of cells.  This is called intracellular fluid.  It holds about 60% of the body’s fluids.  The second compartment is outside of the cells in the extracellular fluid, which holds about 40% of the body’s fluids.  This second compartment includes spaces like the interstitial compartment and the intravascular compartment.  The interstitial compartment is the fluid that surrounds the cells in tissues.  The intravascular component is mostly blood. 

Third spacing is when body fluids collect somewhere that is not in one of the two compartments where your body can use it.  When fluids are inside cells, your body can use it for chemical reactions.  When fluids are in the interstitial and intravascular compartments, your body can use it for lubrication, chemical reactions and moving chemicals from one place to another.  Fluid in third spaces is outside of the circulatory system and cannot be used by the body.
A common third space is in the abdominal cavity.  When fluid becomes trapped between the tissues and organs of the abdomen, it is called “ascites.”  When fluid accumulates in the interstitial area around the lungs, it is called “pulmonary edema.”  When fluid is found between the layers of the skin or mucous membranes, it is called “angioedema.”
Third spacing is a problem for multiple reasons.  The first is that it compresses the structures around the fluid, like when angioedema puts pressure on the throat and makes it difficult to breathe.  The fluid sometimes affects organ function.  Another reason third spacing is problematic is because it can cause the fluid level in the circulatory system to drop.  This means the amount of blood moving through the body is less than it should be, which decreases blood pressure and increases heart rate.  This can be very dangerous.  If there is not enough blood for the heart to pump, it will stop pumping.
People with a lot of third spacing often have symptoms of dehydration.  This includes things like excessive thirst, fatigue, and reduced urine output. 
Third spacing occurs as a result of anaphylaxis.  It is also a common problem for people with mast cell disease in the absence of anaphylaxis due to “leaking” of chemicals like histamine that push fluid out of the blood vessels and into the tissues.  Fluid replacement is very important to staying stable.
There is a lot of anecdotal information that suggests that IV fluids are helpful to counteracting third spacing in people with mast cell disease.  I get 2L of fluids overnight three times a week, and it has helped immensely.  For me, the IV fluids have stabilized my blood pressure, decreased my heart rate and keep my GI tract moving.  My abdominal pain has improved significantly since starting the IV fluids. My energy is better.  I don’t think that it has been formally written up in article form, but this is a treatment that is quickly gaining momentum in the mast cell community.   

The danger of travelling

My life has gotten to be a lot of work in the last couple of years.  My chronic tendency toward dehydration via third spacing means that I’m at high risk for repeat bowel obstructions.  I anaphylax a lot, sometimes without a trigger.  I have a colostomy.  I am pretty much guaranteed to have a variety of medical supplies, syringes, IV meds, epipens and alcohol swabs on me at all times.  I finally have a reason to have a huge purse. 

I am good at advocating for myself and getting my needs met, in all venues of my life.  I knew that travelling would exercise those skills, but I honestly didn’t worry about it very much.  I am very, very familiar with FAA and TSA regulations and how they apply to someone travelling with a chronic illness/ medical device/ lots of medication.  The bottom line is that they are required to accommodate you provided you have the appropriate documentation.  Which I have.  In spades.
I called my airline last month and explained that I had mast cell disease and required several accommodations.  These accommodations included a wheelchair from ticketing to the gate, gate checking my larger suitcase (which also contained medical supplies), boarding early so that I could administer IV meds and set up my infusion, and that I needed to infuse for the duration of the flight.  The person I spoke with was extremely helpful.  She asked some questions about my infusion pump and the volumes and types of medications I would be bringing.  She asked that I bring a letter from my treating physician stating that these medications needed to be with me while travelling and that I needed to infuse for the duration of the flight.  No problem.
I arrived at Logan Airport and had a very painless experience.  They opened up all my bags and swabbed my hands and my meds for explosives. They patted me down.  They were very courteous and helpful.  When it came time to board, I was the first one on the plane and was happily infusing fluids when we took off.  It was really easy.
Then I arrived a week later for my return flight and it was a mess.   It made me really mad, especially in light of my previous positive experience.
The first problem was with gate checking my bag.  I explained to the agent that it had medical supplies and she tagged it appropriately and said it was all set.  Then another agent came up to me and told me that I couldn’t gate check my bag because it was too big.  I told her it contained medical supplies.  She argued with me.  After about two minutes, I told her again that it contained medical supplies.  “Oh, well you didn’t tell me that!” she exclaimed, rolling her eyes.  Whatever, lady.  Gate check my bag.
I got on the plane and pulled out my stuff to give IV meds.  A flight attendant came over and told me to put my backpack containing my infusion pump and meds under the seat.  I told her that I couldn’t because it was going to be attached to my body and I didn’t want there to be tension on the IV line.  I told her that I had spoken with the airline and that the infusion pump/meds are not considered luggage and can be with the passenger in their seat.  “The FAA isn’t going to let you do that,” she said.  I explained that I had infused on the flight from Boston to Seattle.  I offered her documentation and she talked over me.  “Well, you can let me know when you’re done and we’ll take off then,” she told me.  “It’s an eight hour infusion,” I told her.  She shrugged and walked away. 
A few minutes later she came back and told me that “the FAA sees things like this in black and white, and [I] can’t expect them to see things in grey because of people like [me.]”  I didn’t reply and she said, “I’m trying to be sensitive here.”  I do not think that word means what she thinks it means.
So I didn’t start infusing until I was flying.  This is important to the story.  When I started infusing, I noticed there were a lot of bubbles in the PICC line extension.  I realized that the extension was cracked and air was getting into the line.  This is very bad.  I stopped the infusion and had to trouble shoot the situation at 30,000 feet where I couldn’t just call my IV service and ask.  The fact that I couldn’t start infusing while on the ground turned a manageable situation into something very scary. 
While I was trying to identify the best course of action, the lady came over and asked if I felt okay.  I told her that I feel like I always feel.  “Do you need help?” she asked pointedly.  I just looked away.  Her behavior was making me mad, which was causing me to react while I was managing this situation.  I was really not amused.
I ended up disconnecting my extension and connecting the infusion directly to the PICC line without a clave to keep the end of my PICC line sterile.  This required some changing of hardware in the obviously less than sterile environment of an airplane.  I kept the clamps on the line and did not infuse fluids, which guarantees me a bowel obstruction in the next day or two, which guarantees me anaphylaxis.  I bought Wifi and messaged all of my PICC knowledgable friends because I didn’t know what else to do.
I’m now going to have to have a conversation with my doctor about this in the morning and the line will almost certainly be pulled and a new line put in because of infection concerns.  After I had to have IV meds administered to me by my friend (since I can’t access my PICC line without an extension), I put the cap directly on the line.  It is unusable until I get someone to come out to my apartment and fix it.  Thanks, airline lady!  I was so hoping to have more surgery this summer.  I also really enjoy having a line for emergency meds that I can’t use. 

The really unfortunate part of travelling while you’re sick is that it doesn’t matter if you know your rights if everyone else doesn’t know them too.  This woman’s behavior put me in danger.  It remains to be seen if I get a central line infection, but at the very least, she made it a serious possibility.  I am going to get a bowel obstruction because of this situation, which is massively painful and causes anaphylaxis.  This is unacceptable.  I don’t want this experience for anyone else. 

I am reaching out to the airline and hope they will do something about this.  I will keep you all posted.

Story within a story

One of my favorite stories is Frankenstein.  I have probably read it hundreds of times.  I first read it in high school and really didn’t like it.  I revisited it in college when taking a Horror Story class and had a completely different experience.  I suppose I grew into it. 

One of the most interesting aspects of Frankenstein is that it is a story within a story within a story.  It is Victor Frankenstein telling a story to an explorer, who then tells the story to his sister via letters.  It contains the horror, reminds you that this is not happening in real time, but is instead being recounted later.  It makes it less frightening to know that he survived. 

I think of my own life in this same way.  It is less frightening because I know I have survived this long.  It is less frightening if I can build frames around the hard times. 
In 2012, I flew 2200 miles to Seattle and found out while I was there that my colon was no longer functioning.  Then I had these two years of endless struggle to stay one step ahead of my disease.  I had surgery and anaphylaxis and so much medication.  The stakes got higher and higher.  If it was bad, it was very bad, and if it wasn’t bad, it was amazing. 
Last week, I went back to Seattle.  It involved a lot of complicated logistics and hefty doses of antihistamines and steroids.  I was exhausted and sore and I threw up in an ice cream shop.  And it was amazing.  It was amazing.  We had pie and beautiful weather and lounge dancing and pretty dresses and conversation with this wonderfully eccentric woman who I hope to be like when I am older.  I got to live an alternate reality in which I was roommates with two of my dearest friends in Portland, Oregon.  I drank alcohol and played several games of pinball and inhabited this Seattle counterculture for a few days.  I stayed up very late and needed a nap every day.  I had some issues with my PICC line and had some help changing my dressing and administering my IV meds from my best friend.  It was, basically, an accurate representation of my life, if my life were more opulent.
The stakes for this trip were very, very high.  The risk for damage, physical and psychological, when you are sick, is very real.  Every loss, every limitation is magnified.  If this trip didn’t go well, I was probably not going to do any serious travelling in the future. 

On my first morning in Seattle, I got a text from a friend saying, “I’m so glad you’re travelling again!”  And I thought, “That’s right, I’m somebody who travels.” It was like a knot unravelled inside of me and returned this part of me to my soul.
I appreciate symmetry, in literature and in life.  I like framing things so that they have a beginning and an end.  Two years ago I went to Seattle and started myself down this road, and tonight I came back from Seattle, and it’s over.  My disease isn’t over and my life isn’t over, but that period is over.  This whole trip was powerful.  It made me feel powerful.  As my plane touched down tonight, I felt transcendent.  It feels like I transcended, and now I can move on.
In its simplest form, when you look past all of these frames, my story is about a girl, who loves some people and is trying to have a good life.  I am not sick or brave or special.  I am just ordinary.  I realized on this trip that the reason these last few years have been so difficult is because it was hard to find my real story outside of my disease.  It is hard to remember who I am when nobody else can remember either.
I am not my disease.  I am just me. 
Thank you, Seattle.

Inside the bleed

When you are chronically ill, your life divides itself into clean segments of before and after.  There can be multiple befores and afters.  Before diagnosis, after you lost your job, before you had surgery.  Eventually all the befores move further away, a glittering line of time points along the horizon.  They make the past seem so beautiful.

Not a day goes by that I don’t think of these befores, at some point.  I don’t always linger, but it’s hard not to look back, to compare my now with my then.  Every missed opportunity, every experience that I postponed.  Some days it’s not the uncertain future that I struggle with.  It is this definite past, every decision I ever made swarming together and crushing against me with all the weight of regret.
This week, I packed up my multitude of medical necessities and flew thousands of miles from home.  I took an hour long yoga class outside in the sunlight, put on my best 40’s style dress and went dancing, and stayed up way past my bedtime telling stories.  I have needed a lot of rescue meds and taken a lot of precautions, but I am doing it.  I am in a city I never thought I would see again, doing things I never thought I would do. 
On days like today, it seems that the edges of these befores and afters start to bleed together, and I instead find myself living in the space between them.  And it’s still dangerous here, but there are possibilities again that I had shelved a long time ago. 
On days like today, I am tired and sick and very happy.  It feels like maybe I could do this for a while, if I have to. 

Mundane dangers

I recently went out to a restaurant with my family.  I loaded up on meds before we went.  As we were sitting at the table, a thunderstorm rolled in.  I watched with dismay as the street before me became a water way.  I wondered how I was going to get to the car without getting my PICC dressing soaked, causing it to come away from my line and exposing me to a central line infection.  I ended up asking the waitress for a trash bag and wrapped my arm in it.  I ran to the car and was terrified until I got home and could pat it dry.

Today I found out that the IV medication I paid $200 to overnight to Seattle was not delivered and is not refrigerated, meaning that it will almost certainly be useless.  My other option is to pack all of these supplies in my luggage, but it would be too heavy for me to carry.  Not having IV fluids guarantees a bowel obstruction so going without is not an option.  I have talked to eight different people about this and needed medication when I started reacting from getting upset. 
I hate how much I need everything to work perfectly to manage my disease.  It is by the far the most difficult part for me.  I hate that I need people to be completely accommodating.  I hate that I also need nature to be forgiving.   I hate that my life has no flexibility and when I protect my routine, people think I am unyielding for the sake of it.  I can’t control these things, but they can control me.
Day to day life with mast cell disease requires elaborate scheming to achieve even basic things.  Routines are crucial to not needing epinephrine.  Making plans ahead of time keeps us safe, but only if nothing changes.  When things do change and we get upset and people act like we’re crazy, it further reinforces how frustrating this disease is. 
I don’t want to be this way.
I don’t want to be the type of person who cries when something goes wrong.
I don’t want to need other people to keep me safe. 
I don’t want to be demanding and unreasonable.
Some days, I am just so tired of this world, with all its mundane dangers.

World without end

I have absolutely no idea what I did on July 8, 2011.  I’m sure I did mundane things and stayed up late.  I didn’t write in my journal.  It’s funny that I don’t remember this day, one of the fault lines along which my life split. 

At the same time that I was ambling through a normal day, my cousin was climbing over his futon to hang himself outside of his bedroom window.   Almost an hour later, first responders took him to a hospital.  He was resuscitated after such a long time that meaningful recovery was impossible.  
My cousin and I grew up together, less than two years apart, but drifted apart once we hit high school.  There was never any animosity, we just didn’t really see each other much anymore.  We still knew each other in the way you only can if your mothers are close – we heard about each other, all the highs and lows, but had little actual contact.  It had been years since we had seen each other, lots of hauntingly near misses.  I regret deeply every one of them.
My mother called me early on the morning of the 9thand told me what had happened, that he was in the ICU.  I called around to mutual childhood friends until I found someone to grieve with.  There wasn’t much to say.  Together we went up to the hospital that night. 
There were a lot of people in the waiting room for my cousin.  He had a lot of family on both sides, a lot of friends.  We ran interference with the staff while his mother smoked in the courtyard.  At his mother’s behest, I grabbed his chart off the wall by the nurse’s station and flipped through it.  I explained the medical terms, a hollowness expanding inside of me.  And then, when there was nothing else to do, I went into his room to visit with him.
He looked fine.  The fact that he looked fine made it much harder.  He literally looked like he was going to open his eyes and start talking.  There was a bandage covering the thin red line encircling his throat.  His neck wasn’t broken.  The rope had compressed the vagus nerves, cutting off communication from his brainstem to his vital organs.  It had probably happened in less than a second.  He had probably been dead in just a few minutes. 
I talked to him for a while.  I reminisced for a while, shared funny memories with the otherwise empty room.   I thought about how long it had been since we were children.  I thought about how long it had been since he was truly happy. 
My cousin lived for 13 days in the ICU.  It was awful.  We all knew he would never wake up, but it felt like not hoping was a betrayal.  So we carried this sharp and dangerous hope inside of us, and it tore everything around it.  I wish that he had died on July 8, that I had never had to see his body shudder with artificial ventilation.  I wish that I could remember him as he was, all of it, until that day.  I don’t want this ugliness to be part of his story.
Late on the night of the 20th, my friend called to tell me that my aunt was ready to let him go.  I went to the hospital.  I opened his eyes to see them one more time.  I checked his non-existent reflexes out of habit.  I told him that I would see him again, somewhere in that world without end.  I told him that I forgave him and I went to go get drunk with his brother. 
On the morning of July 21st, I opened my eyes into a world in which my cousin was no longer alive.  My sister and our friend, my cousin’s best childhood friend, drove 80 miles to the campground we all had gone to every weekend and all summer long for most of our formative years.  We drove slowly down the dirt roads, the air thick with nostalgia.  We swam in the river and lay on the beach, smaller than I remember. 

Our friend climbed high into the rafters of one of the sitting areas and wrote my cousin’s name in thick bold lettering.  He wrote dates below it, just numbers and punctuation, and the time they spanned felt short.  It all felt very wrong.  Watching him write, I knew that we were too old to be here, in this place where we had grown up. 
But in that moment, my memory stretched back 15 years, to the summer of 1996.  I could see all us running over the packed dirt and concrete, doing cartwheels over picnic tables, laughing.  We were all young and plotting and exploring.  He was having fun.  He was happy and safe.
I like to think that heaven is a lot of things, the best moments of your life played out over and over again.  I like to think that everyone who was present in those moments is present for real in heaven, because it’s the culmination of all things in which all boundaries are lost.
In one part of heaven, I will see this: a big group of kids at a secluded beach at the bottom of a steep dirt hill, jumping off a dock and swimming in the river.  This is the story I want – the one where he never left that summer.  He is still 14 and he never finds drugs or depression.  And in this story, I remember clearly that we were all happy once.  For a brief moment in time, we were all happy together.  That is what I want to remember.

As good as it gets

Yesterday, I had a very normal day.  I worked from home and stayed inside, out of the heat.  I ate low histamine food and avoided triggers all day long.  Around 8 last night I started reacting anyway and needed all the meds.  Stability is like a mirage; it looks close, but I can never quite reach it.

There are a lot of people for whom mast cell disease is mostly a nuisance.  My disease was never like that, but I sort of behaved like it was.  I knew I would pay for it if I stayed out late or exercised too much but for a while, I could make myself do it anyway.    I wanted to believe I could have any life I wanted.  I wanted to believe that my body could take as much as my mind could.
But my disease isn’t just a nuisance and eventually it caught up to me, all at once.  I don’t know about you, but mast cell disease runs my life right now.  It will be at least a voting member for as long as I live.  Mast cell disease isn’t something I gave into it.  It is something that happened to me.  To imply that by living within the lines it drew means I have less willpower or ambition is offensive.  To say that I am weak because I have to avoid triggers as much as possible is just naïve. 
And when people say, “I don’t let my disease control me,” all I can think is, Well, there’s still time for that, isn’t there. 
I used to be so independent.  I used to do everything myself.  Now I have to have people drive me around most of the time, I have to get help to carry things, my friends come over and do chores for me, I can’t travel alone.  Maybe my apartment is messier than I would like, and I always have unfolded laundry piled in my basket chair, but I can work full time, and see my friends and family, and be safe. 
I still have dreams.  I still want to do things I know I’ll never be able to do.  Every once in a while, I’ll be talking to someone about these things and get really excited.  I think to myself, if I could just hold onto this feeling, I could do this.  But I never can.  This loss of possibility is the hardest for me.
For some of us, this is as good as it’s ever going to get.

Seattle, redux

I was diagnosed with mast cell disease in January, 2012.  At the time I was diagnosed, I was sleeping through entire days, so brain fogged that I frequently forgot basic facts, and spent most of the time I wasn’t asleep in the bathroom.  I was a hot mess.  My mast cell specialist ordered the relevant tests but was sure this was some kind of mast cell disease, so he put me on medication immediately. 

About two weeks after starting medication, I woke up one morning and felt better.  Not 100% better, but better than I had felt in months.  A few weeks after that, I went back to work.  I was trying to learn the boundaries of my disease but in those first few months, I honestly thought that I might get my life back.  I still needed a lot of rest but I felt stronger, happier and much more functional.  I call this my “honeymoon period.” 
During this time, one of my dear friends came home from Seattle to have a wedding shower with her Boston family and friends.  While making duct tape flowers, I decided I was going to go to Seattle for the wedding.  I had been feeling pretty good for a few months and figured there was no reason not to.  Several of our friends were going so I figured if I got into trouble, there would be people to help me. 
So I bought airfare to Seattle and arranged to fly out and share a hotel room with one of my friends.  I requested the time off from work and didn’t really think very much about it.
The flight out there was fine.  We got picked up from the airport and found a bar that served us grilled cheese sandwiches and tomato soup on a very wet night.  We went back to the hotel and crashed.  So far so good.
In the morning, we wanted a big breakfast.  We walked around Seattle and eventually ended up at an awesome place called Glo’s.  I had Eggs Benedict and a lot of coffee.  I then discovered that I could no longer go to the bathroom. 
I didn’t know exactly what was happening but I knew that it was different than anything I had experienced before.  I have had GI problems my whole life.  Something was wrong.  We went back to the hotel and things got worse into the next day.  I called my doctor and he agreed that if I felt it was safe, that avoiding going to a hospital in Seattle was the best idea.  I employed some extraordinary measures, put my friends to work and pushed through the pain to make it to the wedding.  I’m glad I did, but it was not the trip I wanted to have.  It proved definitively that I was sick, that I was always going to be sick, and if I didn’t remember that, I was going to end up in a lot of trouble.
That trip to Seattle is the very first time I gambled that I was healthy enough to do something and lost.  It was also the point at which I realized my mast cell disease was seriously damaging my body.  The dehydration caused by the flight had turned an annoying but manageable situation into a nightmare.  It would have happened eventually, I’m sure, but the fact that I wasn’t near my doctors and home when it happened made it worse.  In the few months after I got back, I had scopes and tests and met with a surgeon.  My systemic symptoms were being triggered by the pain and poor lower GI function.  Less than a year later, I had surgery to place a colostomy. 
Next week, I’m going back to Seattle.  It feels a lot like I have a score to settle.  There’s going to be a 40’s lounge night and a trip to Portland and cute dresses and maybe a death tour.    There’s also going to be low histamine food and some flushing and probably vomiting and possibly some anaphylaxis.  And maybe I’m going back with a central line, a colostomy, lots of IV meds, several bags of Lactated Ringer’s, ten Epipens, a backpack full of oral meds, healthcare proxy paperwork, sterile dressing change supplies and a best friend who can push my meds if I get into trouble, but I’m going back.  Stand up and fight.
I’m coming for you, Seattle!  This is going to kick ass.