Beautiful things I can’t have

I’m a Buffy fan girl.  I’m sure this surprises no one.  Strong characters, the supernatural and witty banter is basically a recipe to get me as a loyal fan.  I know all the words to the sing along episode and have been compared to Willow more times than I can count. 

There’s an episode in the fifth season where Xander and Anya go to look at an apartment.  She is upset because she doesn’t think they’ll get it.  Xander asks her what’s wrong and she says this:
“What’s going on with me is that my arm hurts… and I’m tired… and I don’t really feel like taking a tour of beautiful things I can’t have.” 
That’s how I feel right now.  I don’t really feel like looking at beautiful things I can’t have.
I have always identified as a traveler.  As a kid, I would take out language books from the library with the clear intention of learning the language for when I went there.  When I was 19, it occurred to me that if I saved up my money, I could go wherever I wanted.  I got some books and planned a trip and went to Europe. 
In 2007, when I was starting to get sick, I went backpacking in Scandinavia.  I went hiking and got really lost in this beautiful national park in Norway.  I got drunk on a ferry sailing between Estonia and Finland.  I felt tired and at the end, I felt sick, but I was mostly able to do everything I wanted to do.
In 2009, I bought tickets to Ireland and went for a quick four day trip with my boyfriend at the time.  I was exhausted and sick, but I was still able to go.  I needed a lot of sleep but otherwise it was fine.
I took a bunch of other trips.  In 2012, I went to Seattle and we all know how that went.  I came home to lots of serious news and slowly I stopped thinking of myself as a traveler because it hurt a lot.  I stopped reading my dozens of travel books and drawing maps and studying languages.  Doing those things felt like sticking my hand into an open wound.  It felt like trying to push through the looking glass only to find I was still in this strange facsimile of my life where I was sick and couldn’t do this thing that defined me.
In the last couple of weeks, I started feeling like maybe this was going to be possible again.  Maybe I could travel, if I had someone with me to help me.  Maybe I could plan trips again and look forward to them.  Maybe I could go to all these faraway places and feel this stillness in my soul that I only find when I’m away from home. 
I was supposed to go to Asia in the fall.  I was originally supposed to go in the spring but I was too sick.  So we decided to go in the fall.  We were going to fly through Dubai to Bangkok, spend a few days in Bangkok, take a private tour to Angkor Wat in Cambodia, go to an elephant preserve, spend a few days in Dubai on the way back.  I have been planning this for months, both the fun part and the not insignificant logistical shuffle of travelling out of the country with a ton of medication, medical supplies and large bags of IV solutions.  I was planning to book our airfare tomorrow.
But a few days ago I found that one of my best friends was stealing from me, and she was supposed to go to Asia with me.  She was supposed to help me to live this dream that has buried for years under the rubble of mast cell disease. 
I’m more upset about Asia than I am about the money.  Because I found out a couple of weeks ago that I could still travel, but only if I’m with someone who loves me and understands my disease and what to do in an emergency.  I cannot travel alone.  I wish I could, but I can’t deny that it’s too dangerous for me. 
The fallout of this woman stealing from me has been significant.  I have needed epinephrine and lots of IV meds and steroids, and even now as I type this, my skin is burning and my heart is racing and my insides are doing that cringe and shudder that means that with just a little push, I can be in trouble again.
When you have mast cell disease and people mistreat you, your choices are to move on quickly so as not to anaphylax or to get mad and risk ending up in the hospital.
It’s not as much of a choice as you might think.
If I fall down and scrape my leg, it is an emergency.
If I forget to take a single dose of any of my many medications, it is an emergency.
If I forget to put on the AC and fall asleep, it is an emergency.
If I get too mad, it is an emergency.
Around 4 this afternoon, I locked a syringe of 50 mg IV Benadryl into my PICC line and angrily uncapped my Epipen.  “I really hate that I’m so sick that I have to use epinephrine at home on a regular basis.  That makes me really mad,” I told my mother as I brought the tip down against the outside of my thigh.
There seems to be some confusion over whether or not what my “friend” did was wrong because she “tried to pay it.”  (I know, don’t get me started.)  So let me make it really clear.
I don’t care about the money.  If she had asked, I would have given it to her.  This is not about the money.
This is about everything else she took from me.
She took my right to feel like I can trust people to take care of me.
She took my right to feel like I can accept help without getting screwed.
She took a lot of my energy over the course of our friendship.  A lot. 
She took my safety because this was such a violation that I can’t help but feel angry and it is making living in this body even more dangerous than usual.
She took my ability to go on this trip.  She took my ability to feel like I can get this part of myself back. 
So disappointing.  I have never been more disappointed in a person in my entire life. 
And for the sake of being thorough, I want to deal with this: at least one person thinks that it’s okay that they knew about it and didn’t tell me because she wasn’t “being malicious.” (I don’t even know what that means.)
What she did is criminal.  Stealing is a crime.  Stealing from a very sick person is a more serious crime.  This is not the personal opinion of Lisa Klimas.  This is the opinion of the criminal code of the State of Massachusetts.  If you know someone is preying upon an ill person, and you do nothing, you are just as guilty.  You are not a “good person” who is getting “blamed by association.”  You are a loser.    
My friends are closing ranks around me.  I have received over a dozen offers to do my food shopping, all with the added promise that they will not steal from me.  They are making me laugh.  (Quote of the day:  “’How does one pay a credit card without the bill?’ ‘Oh, I just write credit card on cash and throw it out the window, does that not work?’”) They are reassuring me that they will not betray me.  They are reassuring me that they will take care of me and that they love me.   They are letting me know that they will support me however this plays out.
They are really angry that this happened to me.  Honestly, I am a little surprised at how angry they are.  But I get it.
I’m tired of looking at beautiful things that I can’t have. 
And they’re tired of watching me. 
So disappointing.

On being vulnerable and trusting the wrong people

I like routines.  On Sunday nights, I take a shower, wash my hair, take down my ostomy, organize my pills for the week, pack my stuff for work, organize my dressing change supplies, put clean sheets on my bed and hook up my IV fluids.  I do it even if I know I won’t sleep because it relaxes me.

Last night, I was lying in bed infusing and cruising around the internet because I couldn’t sleep.  I needed to pay some bills so I pulled them up on my phone and started making payments.  When I got to my credit card, I was confused because the card was over the limit and there was no reason it should have been.
I pulled up recent transactions and there were several in the last few months.  I immediately got a sinking feeling in my stomach.  This spring when I started having a really rough go of life, one of my best friends offered to do my food shopping for me.  I gave her my credit card to pay for the groceries and haven’t seen the card since. 
I sent her a text asking if she had used my card to buy things and waited to hear that she had lost the card or something.  Nope, she admitted to using my card on multiple occasions without my permission.  She told me that she had sent in payments, none of which have been credited to my account.  So in the last four months, she has, on multiple occasions, used my credit card without my permission and tried to send in payments without my knowledge so that I wouldn’t find out. 
This is a person who has taken me to the hospital for appointments and taken care of me after surgery.  This is a person I chose to help me at a time when I was feeling unbelievably fragile and vulnerable.  I have known this person for almost twenty years.  And she stole from me. 
If she had some type of emergency and used my card, and had let me know about it, I wouldn’t have cared.  If she had asked me to borrow money, I would have given it to her, no questions asked.  Instead she has been stealing from me for months.  It’s really making me wonder about a lot of other things.
I can only assume that she was counting on my illness to not get caught.  She knew I was exhausted and distracted because of how sick I have been recently.  She knew that I trusted her and would keep sending in my regular payment without paying attention to my statement because I believed she was trustworthy.  She was right.  That’s exactly what I did.  If not for the fact that I couldn’t sleep last night, this might have gone on indefinitely. 
I was planning to go to Asia with her this fall, and felt very secure in that plan because of how much I trusted her.  I was really looking forward to going.  Now instead of booking our tickets for that trip (which I was planning to do on Wednesday!), I have spent the day on the phone with my credit card company and in a really uncomfortable state of stage 2 anaphylaxis.  I have needed a whole mess of extra meds today and it is just barely containing the reaction caused by all of this.  I’m accepting bets on the over/under for how much extra medication it takes in the next few days to get me stable. 
I have been very open about needing a lot of help to get through my days.  The people I have asked to help me are my very closest friends and family.  These are people I am not embarrassed to puke in front of.  These are people who I trust to help me into the shower.  These are people who have seen my stoma.  These are people who will rub my back when I am screaming in pain from a bowel obstruction.  These are people who make jokes with me about my illness and generally make me feel less alone. 
Finding out your friend is screwing you is bad enough, but sick people are especially at risk because we often have no choice but to trust people to help us.  And since I’d rather not need someone to help me do basic things, it is really humiliating and horrifying to discover that my trust was misplaced.  I have stood by this person through seriously hard times and supported them when no one else did.  I just really can’t believe it. 
I generally try to wrap up my posts elegantly, but I just can’t right now because seriously what the ever loving fuck. 

Mast cell disease and the spleen

Spleen is known mostly for having a stupid name, but it actually does a lot of really important things.  It is located in the upper left quadrant of the abdomen.  It is essentially a filter.  It removes old or damaged red blood cells.  It retains a supply of blood that can be used to regulate blood pressure in case of hemorrhage.  It also recycles and conserves iron by metabolizing hemoglobin removed from red blood cells filtered out.  The spleen also produces antibodies and filters out bacteria and blood cells that have been attacked by antibodies and marked for removal.  In this way, it is effectively a very large lymph node. 

Another very important function of the spleen is creation of blood cells.  In cases where the bone marrow is producing fewer blood cells than normal (like myelofibrosis), the spleen can actually compensate to produce red and white blood cells.  About ¼ of the body’s white cells are stored in the spleen at any time. 
Swelling of the spleen is called splenomegaly.  If a swollen spleen can be felt manually, it is at least twice its normal size.  The spleen usually swells when it is working harder than normal.  This can happen for several reasons. 
Swelling of the spleen often has no symptoms.  It can cause abdominal, chest or back pain and the feeling of having a “small stomach,” being able to eat less than normal in one sitting.  Anemia may also be present.  The most common reason is developed countries is mononucleosis, followed by infiltration by benign or neoplastic cells, or portal hypertension.  Bacterial infections like syphilis can also cause a swollen spleen.  In people whose bone marrow is not producing enough cells, the spleen can become swollen by the effort of producing extra cells. 
It is should be stated that swelling of the spleen is pretty common in blood disorders.  It is sometimes found in systemic mastocytosis.  As the spleen gets bigger, it grows beyond the borders of the protective rib cage and can be more easily damaged.  Swollen spleens present an increased risk of rupture. 
In SM, splenomegaly (swollen spleen) is NOT a C finding indicating aggressive disease.  It is a B finding.  This is because mast cells often infiltrate the spleen, causing swelling, but not necessarily impairing function.  Hypersplenism with splenomegaly is a C finding.  Hypersplenism is when the spleen is working too hard. 
Hypersplenism is indicated by swelling of the spleen, reduction in circulating red blood cells, platelets or granulocytes (neutrophils, eosinophils, basophils or mast cells), increased proliferation by the bone marrow to compensate for the decrease in circulating cells, and probable resolution of these symptoms by removal of the spleen.    Hypersplenism can cause additional complications, including portal hypertension and ascites.
Portal hypertension is increased pressure in the vein that connects the GI tract and spleen to the liver.  Ascites is free fluid in the abdomen.  Both portal hypertension and ascites are also mastocytosis C findings.  Removal of the spleen can decrease the patient’s risk of portal hypertension and ascites, thus improving prognosis.  Additionally, in the context of mast cell disease, an infiltrated organ is inflamed, which is in turn activating to mast cells.  Removal of a source of inflammation can cause relief of systemic activation.
People living without a spleen are more susceptible to certain types of infections, including H. influenzae, S. pneumoniae, and Meningococcus spp.  They should receive vaccinations for these organisms and also regular flu vaccinations.  In some cases, long term prophylactic antibiotics are needed.  Often, patients without a spleen develop a stable high white blood cell or platelet count as their numbers are not regulated by the spleen. 

Your top five problems

I had a conversation with one of my friends many years ago about kids worrying about things.  I don’t know why I remember this so vividly, and I don’t remember why we were talking about it.  I remember him saying, “I think no matter who you are in life, you have your top five problems.  And you worry the same way about those problems, no matter what they are.  So if a kid is worried about a spelling test and you’re worried about losing your house, the amount you each worry is the same.”  I started assuming that everyone was worrying about something and even if it seemed insignificant to me, it was important to them.  It has made it much easier for me to be kind to people who frustrate me.

I remember this conversation when I observe interactions in the mast cell community, which largely happen online.  Communities like this have some weird dynamics.  Sociologically, it’s interesting; as someone occupying one of these microcosms, it can be annoying.   Venting about your symptoms can create a weird situation.  Some people will relate to you and will say so.  Some people will relate to you, but feel guilty saying they relate because they feel like it will offend those with more severe disease.   Some people will think you’re whining and don’t have it that bad and should get over it. 
It is okay to vent.  You do not need to feel guilty if your symptoms are not as bad as someone else’s.  You do not need to feel guilty if you have support.  You do not need to feel guilty if you have good insurance.  You having these things does not change the realities for others who have worse symptoms or circumstances or whatever.  The strength of our community is that we understand each other and support each other.  In exchange for getting mast cell disease, you also get to complain about it sometimes to people who get it.
When I sleep, I move through my dreams in a whole, disease-free body.  I don’t have a colostomy or a central line or surgical scars.  I can hear and I never puke.  When I wake, I am often surprised to be in this body, this damaged and painful vessel.  I am forced to acknowledge and accept that this is real.  On some days, that’s really, really hard for me.  I wake up to pain and vomiting and I pull my blanket up over my face to be alone with my tears for a little while.
So when people say things like, “You need to get over it,” all I can think is: I’ll never get over this.  I live my life, and I like it, but I will never get over what this disease has done to me and my life.  I will never get over who I could have been if not for mast cell disease. 
Because I like the person I am, but the person I was trying to become – I liked her, too.  She’s who I think about when I’m under my covers on those mornings when I don’t want to believe that this is still real.  I think about all the extraordinary things she could have done, and how the only extraordinary thing I’ll do that day will be to get out of bed when I don’t think I can. 
You can’t get over something that is still happening to you.  You can only learn to live with it. 

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.