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my feelings

Hope

Yesterday I got myself really stressed out and had full blown anaphylaxis.  I used my epipen and pushed meds and sulked on my couch.  It was a sulking kind of day. 
Today I woke up with sore, weak muscles.  My hands shook as I made coffee in the dark, my eyes too sensitive for light.  My skin burned.  I burnt my tongue on my coffee, swallowing a handful of pills.  I rolled my eyes when I confirmed that I still have a lower GI bleed.  I hooked up another bag of IV fluids and went back to bed.  I thought about some recent events and how low they had me feeling.  I thought about the danger to a community that doesn’t get all the information they need.
But tonight I got hundreds of messages from people supporting me and thanking me for all I do.  It was really, really humbling and amazing. 
There needs to be a safe place to vent about your experiences and receive support from people who understand you.
There need to be multiple reliable sources of information, with cited sources, readily accessible by people who need it to make decisions.
There needs to be security in the community that you are among honest people who do not seek to manipulate others. 
There needs to be certainty that when you entrust someone with your personal health information that they will not betray that confidence.
There needs to be an understanding that people who do what I do exist to serve our community, not the other way around. 
There needs to be democracy.  There needs to be a way for people to disagree without retribution.
There needs to be hope.  People deserve to know that it’s not hopeless. 
I have mentioned before that a lot of people tell me their secrets.  They’re not always health related; I seem to be the recipient of quite a bit of gossip these days as well.  I told a mast cell friend of mine recently that I didn’t know why people told me these things. 
She responded, “It’s because you’re our leader,” and I shivered.
I don’t think of myself as being a leader.  I think of myself as being a sick woman who is trying to help other people be less sick and more heard.  I am just another mast cell patient.  I am just like all of you. 
But if you think of me that way, then I want you to know this: 
It bothers me to see so many scared people when we live in an age of so much hope for these diseases. 
This is not rhetoric.  We are seeing real results with new medications and are diagnosing people earlier.  Just twenty years ago, mastocytosis was usually found on autopsy.  How amazing that now we can be treated and live with this, even when it doesn’t feel like a blessing.
I believe we won’t always be sick.  I believe that if just twenty years ago, very few could live with mastocytosis, that in another twenty, we’ll all take a pill every day and be free.  I really, really believe this. 
None of the nonsense that happened this week matters.  If I can give people hope, it is worth it. 
Hope is what’s important.  I have it.  So should you.

Inconquerable

I scanned Astoria’s medical records today to send them to my vet.  As I was removing the papers from the scanner, I caught the name of her previous owner.  For some reason I can’t really explain, I decided to look this woman up. 
I saw pictures of Astoria as a puppy, with captions that clarified some of her history.  She was indeed rescued from a Southern shelter as a very young puppy.  Story lived with this woman until the spring of this year, when she felt she could no longer keep the dog and planned to give her to a shelter.  Astoria’s trainer offered to keep her until a suitable owner was found.  I brought her home last month.  I am in her fourth home in two years.
Every time I go out, Story thinks I am never coming back.  She hangs her head and follows me around when she can tell I am leaving.  After I’m gone, she pulls down the covers on my bed and lay in my spot.  If I’m home and there is a closed door between us, she paws at the door and whines. She wants to be close to me all the time.  Every time I come home, her body vibrates with the intensity of her relief.  It is strange for me to think that she is still wondering why this other woman never came back. 
She is triggered by odd things and it frustrates me that there is this history I don’t know.  She lives around these limitations, but she is still scared.  She does not believe that I will return until I do.  I think she will eventually trust that I am her person forever and I will always come back.  I think someday her past will not hamper her spirit.
My health has been bad for so long that it started to feel like my body didn’t have any good days left in it.  I woke up this morning typically nauseous and sore.  I took a handful of pills with my coffee before disconnecting my overnight infusion from my port.  I knocked all my makeup off its shelf and was gearing up to fight through another difficult day.
As I was walking out the door, I realized I wasn’t nauseous anymore.  It was a cool and breezy morning and it smelled like frost.  I went to work and had a really pleasant and productive morning.  I had forgotten my lunch so I took a chance on a salad from a restaurant down the street.  I ate it at my desk in case I needed IV Benadryl.  But I had no reaction.  I felt totally fine.
I worked a full day and got a lot done.  I was able to share with my coworkers the success of a child on midostaurin, a Novartis clinical trial drug for Aggressive Systemic Mastocytosis.  They were so excited to hear the personal impact of one of our drugs.  After work, I got a Pumpkin Spice Latte at Starbucks and took the train home.  My train was delayed for twenty minutes in a train tunnel for some reason and I didn’t even care.  I didn’t have any bone pain or joint pain.  I had no headache.  I wasn’t short of breath.  I wasn’t flushing.  I wasn’t bowel obstructed.  I wasn’t nauseous and I hadn’t thrown up all day.  I was still a little sore from the port being placed but it wasn’t bad.  I walked between stations rather than switch lines, drinking coffee as I navigated the sunny Boston streets.  It has been a long time since I walked around my city without having to sit down every few blocks.
When I came home, I found that Story had unrolled my yoga mat and was literally doing upward facing dog on it, so I thought, why don’t I do some yoga?  So I unrolled my other mat (because Story was still laying on the other) and did a good 40 minutes of yoga for the first time in a long while.  I brought her out to the yard to play with Harry while my friend came over to give me a massage.  And of course, that was super pleasant and I felt very relaxed when she was done.
I took Harry for his usual ten minute walk around the school yard and as the first stars were coming out, I walked down to the beach with Astoria.  For once, she wasn’t pulling me all over the place and was happily killing a stick as we walked.  We walked the length of the beach in the chilly night air and when we got home three miles later, I felt tired but otherwise fine.  I drank my can of Coke while reading a paper on mast cell biology.  I took a hot shower, which has recently become a lot more pleasant due to no longer having to cover the PICC line.  When I face into the water, I just hold a face cloth over the accessed port.  When I’m done, I just wipe it off with a towel.  It is seriously the greatest.
I took my night pills and opened Netflix on my computer after crawling into bed.  As I looked through new arrivals, I saw a documentary I have been wanting to see.  I put it on and pulled out my other laptop to write this as I snuggle under my heated blanket.
It is now after midnight, so I’m no longer worried that I will jinx it by saying: I had a perfect day.  I somehow, after all this time, and all this pain, had a day where mast cell disease did not affect my life at all.  I had a day with a really great Cobb Salad and yoga and a walk down the beach and a massage and getting to remind my very hard working colleagues on behalf of the mast cell community that what they do can save lives.  I am optimist because I don’t think there’s any other way worth being, but I have to admit that I was doubting whether or not I would see a day like this again.  Sometimes you get what you need. 
Someday Astoria will have a perfect day, too.   Someone will bounce a ball off the ground for her for hours so she can catch it and then a dog will play chase with her somewhere where she can roll around in the dirt.  She will get to pull all the stuffing out of a stuffed crocodile.  Then she will eat several cookies, and when I go to work, she will know that I will come home. 
We both live with these damaged spirits, but I’m starting to believe that maybe they don’t have to be damaged forever.  Because when I have a day like this, I realize it’s still there, as full and as vibrant as it ever was, and I know at once that it is inconquerable. 

Fat

Once I hit puberty, I was a fat girl.  I wasn’t morbidly obese, but I was overweight and it was obvious on my short frame.  This was not something I hated about myself, and it wasn’t until college that I felt uncomfortable with my body, but it informed my later years.  The experience of being overweight (and therefore mocked/ridiculed/generally viewed as “unfortunate” or “unseemly” or “lazy”) has affected my ongoing relationship with myself.
In 2007, I lost 40 lbs by training for the Breast Cancer 3-Day.  I also lived alone and worked a lot, on my feet.  I was committed to training, but also still had the privilege of a largely functioning body.  I was tired and had some joint issues, but it was more occasionally annoying than anything else.  Most importantly, I had time and stamina.  I could walk 10 miles a day, in the sun, in the heat, without any fallout. 
My weight fluctuated a little bit for the next few years, until in 2009, when I lost my hearing.  My neurotologist wrote out a long, high dose steroid taper and within a month, I had gained over 20 lbs.  In 2012, after a serious effort (working out 6-8 hours a week for several months), I lost 10 of those pounds. 
This was the point at which I realized that there was some fuckery afoot with my weight.  Like no matter what I ate, or how much I exercised, my body would not lose any more weight, and especially not around my swollen midsection.  A few months later, I had my ostomy surgery and in the weeks after that, I lost 10 more pounds.  The swelling and squishiness was gone.  The proof was in the pudding.  My mast cell disease and its subsequent inflammation were keeping me swollen, and squishy, and fat. 
Fast forward several months and a prescription for high dose steroids was being slid across the desk to me.  “I don’t want to do this again,” I started, but I knew I basically had no other play.  So I took them.  And two months later, I had gained thirty pounds. 
I am still on steroids; very low dose, but still on them.  As I have stepped down the steroids, I have lost some weight, but I am still 20 lbs over where I was.  I walk a lot (10-15 miles a week), and do yoga as I’m able, but my body has taken a serious beating this year.  I got a PICC line placed in March, which meant no weight bearing with that arm, and that eliminated most strenuous forms of exercise I can safely do.  I can’t do cardio.  I couldn’t swim with the PICC.  Now I have a port, and I can’t do any exercise for at least five days.  I’m forever being told not to exert myself while also being reminded that being overweight causes me a lot of problems. 
I have almost no control over the way my body looks.  I don’t mind having a colostomy and a port, I really don’t.  But I do mind that being overweight means that people judge me for being “lazy” or “unhealthy” or “making bad choices.”  I don’t know why anyone would ever comment on a person’s diet or general fitness, but it happens to me, so I’m sure it happens to you.  People are always like, “Oh, anyone can do [insert name of cliché fitness trend],” or “Your problem is that you drink soda,” or whatever. 
Are you kidding me, people?
Are you fucking kidding me?
I think my problem is that I have a rare, severe, life threatening disease that is destroying my body.  I think that’s my problem.
I cannot eat your stupid diet food because it’s full of artificial sweeteners and garbage.
I cannot do cardio because it will cause me anaphylax. 
I cannot do most other types of exercise because my body fucking sucks and has failed me repeatedly.  And the fact that it is fat is the least of the ways it has failed me. 
I throw up a lot of what I eat.
I drink one can of Coke a day.  I will probably do this every day until I die.  And you know what?  That’s 140 calories my body needs, because while you’re thinking about how much less I should be eating, I am not getting the amount of calories or vitamins or minerals that my body needs.  And frankly, for all the shit I have to put up with on a daily basis, a can of Coke is the least of what I deserve.
I don’t like being inactive.  I don’t like lying in bed and needing to sit frequently.  I don’t like feeling weak. 
There are some days when I look in the mirror and think that can’t be me.  I am so tired of living in this shell that doesn’t even look like me.

Becoming reality

I scheduled my colostomy surgery about six weeks before I had it.  That afforded me a comfortable window of time to overthink it and work myself up.  I am a logical person.  I am a scientist.  I understand the risks and rewards of procedures and meds and so on.  But I am also human.  While I knew it was the right decision, when I was alone, I often thought about all the ways it could go wrong.
One of my friends asked me if I was ready for surgery a couple of weeks before I went in for it.  “I wish I could just do it right now,” I answered.  “Once it’s my reality, it’ll be fine.  This thinking about it all the time is exhausting.”  I think that sums it up well.  I just need these things to happen because once they become my reality, I just deal with it and move on.
Part of why mast cell disease is scary is because so many things can go wrong.  That doesn’t mean they ever will, but even if you feel confident you can manage your symptoms, you can’t help but think about all the horrors lurking in the dark places of the world.  But it’s not productive or comfortable to live your days living afraid of all the terrors that might befall you.  When living with mast cell disease is your reality, you just do what you have to do to get through your day.  It’s okay to worry as long as it doesn’t keep you from living.
I got a port placed today.  I have known this was coming for some time and I know plenty of people who have them.  It was not something I was logically worried about. 
But last night, the mental gymnastics started and suddenly I was worried about IV contrast accidentally being used and my friends and family reading my journals after I died from the reaction.  There was no reason to think this would happen.  It was pure ridiculousness.  But that doesn’t mean it’s not scary. 
I told a friend about it.  “Oh, I thought I was the only one who did that!” she said.  No, you’re not.  We all do it, whether or not we admit it. 
This morning I arrived at my hospital at 6:30am to have my port placed.  I met with the PA doing the procedure at 7.  He had read my entire history (“Which is really long and interesting,” he noted) and did some research on masto.  He went through the entire procedure, what materials would be used, what meds would be pushed, and made necessary changes.  (No Tegaderm, no chlorhexidine, absolutely not under any circumstances IV contrast.)  He asked what I wanted for premeds and ordered them for one hour before the procedure exactly as I requested, right down to the diluted Benadryl pushed over 10 minutes followed by a slow flush.  The nurses and technologist were excellent and the procedure went very well.  I am very sore and tired, but I have an accessed port and no PICC line and no reaction to speak off.  That’s what I call success.
Whenever my body changes in a noticeable way, I show it to my animals and let them investigate it.  Tonight I sat on the floor and Story came over and sniffed at my port and mouthed at it a little.  “It’s okay,” I told her.  “My body used to look different but now it looks like this and it’s okay.”
And you know what?  It really is. This reality is not so bad at all.
 
 
 

Last days here

I have a lot of flaws, but one thing I am is fair.  I have always seen the world the same way: balanced in all things, if you wait long enough.  It seems to me that life is just a series of interconnected decisions, a closed system; that if you had a lot of bad, you would have a lot of good to balance it out, to zero the sum.  Part of the difficulty of being sick is that, in the back of my mind, I am waiting for it to balance and it never seems to.  In the quiet moments, it leaves me disappointed and confused.
Life gets a lot less confusing when you realize that even if it balances, it is not fair, and that sometimes things happen without a reason.  It is much less confusing when you accept that sometimes, no matter how hard you fight, life breaks you in a way that can’t be fixed.
I have been trying for a while to remember a particular day: the last day when I was healthy.  It’s hard because every time I think I have identified the window in which it would have taken place, I am reminded of some previous strange illness or reaction that looks decidedly like masto.  I remember my back injury when I was 13 and the bizarre subsequent neuro issues.  I remember breaking out in hives from eating salsa and thinking for years that I was allergic to tabasco, chili and cayenne.  I remember sudden, severe abdominal pain as a child and burning lungs.  The truth is that I lived my last day as a healthy person so many years ago that the memory is lost, and I never even knew it. 
My disease has changed this past year.  It used to be that I would have sick days and then they would pass and I would feel better, normal.  Now I have bad days and normal days, except now on my normal days I am nauseous and flushed and in pain.  Like so many things about my life, it is hard to isolate exactly when it became this way, constant and more pervasive.
I cherish these normal days, so wonderful compared to the bad ones.  In the dark of night, I fear they will end forever someday.  What will I do, when they are all gone? 
I worry that maybe this feeling of transience I experience now is a sign of this happening.  I am afraid that maybe I’m living the last days of this stage of my life, and when it is gone, I will miss it.

A long, long way

This weekend, one of my oldest friends got married.  The wedding was about three hours away.  My mother rented a Mustang convertible, I packed all my various medical supplies and a couple of dresses and we drove up on Friday night.
“Can you ride with the top down?”  she asked, excited.  I thought about it.  I thought the sun might make me feel gross, and it was very hot out.  But it isn’t every day that you get to drive around in a convertible so I figured I’d give it a shot.  I put on sunscreen and sunglasses and away we went.  It was very Thelma and Louise.
I felt gross on Saturday morning, but I didn’t really care.  I loaded up on meds and tried to keep the nausea at bay.  I put on my dress and braided my hair.  I crossed my fingers that I got through the day without vomiting indiscreetly or needing epinephrine.  And I did.
The bride and her family have been close to me and mine for over twenty years.  She and I grew up together.  She and her mother both told me how glad they were that I made it.  They knew how sick I had been, and that making the trip was hard on my body.   So often people don’t understand how hard things are for us that when people do understand, it means a lot. 
It was this month last year that I started having serious bone pain.  It was this month last year that one of my doctors told me that he thought my CT scan had been misread, that my spleen looked swollen to him.  It was this month last year that I lost the semblance of health I had been holding onto. 
It was this month this year that I drove to my friend’s wedding three hours away in a convertible on a hot summer day.  It was this month this year that I went to the wedding and didn’t need epi or IV meds while I was there.  It was this month this year that I reflected on how far I had come while driving home from the White Mountains.  There has been a lot of struggle, but there have also been a lot of good days, and some really great ones that I’ll never forget. 
One of the things about being sick that healthy people don’t experience is how satisfied and accomplished you feel when you are able to do something important in spite of your illness.  I was exhausted and in a lot of pain when I got back to the hotel last night.  But I was also very happy that I had been able to be present for such an important day.  I was proud of myself and my body for pulling it together.
You don’t get a choice in being sick, but you do get a choice in where you place your energy.  A lot of the time, it goes to mundane things, cooking, shopping, laundry.  But every once in a while, I save up and blow it all on something big.  It will take a few days to get back to my baseline, and I took a lot of extra medication, but some things are worth it. 
I can live with this if I can still do the things that are worth it.  Having mast cell disease doesn’t matter when you get to be with someone you love while they have the happiest day of their life.  And when I look back, I can’t deny that I have come a long, long way this year.

Limitless


I didn’t sleep well last night, and when I opened my door to go to work, it was really hot out.  Over 90 degrees, sunny, stiflingly humid.  The very short walk from the car to my office left me flushed and sweaty.  I was feeling usual level nauseous and my skin was burny.  My PICC line insertion site is sore.  It was shaping up to be a rough day in the neighborhood. 

I had a meeting this morning and then another one late in the afternoon.  I needed to take Benadryl before the first one was over.  But I was tired of being that sick girl who had to reschedule a meeting again, so I sucked it up and stuck it out.  It wasn’t super comfortable, but some days my stubborn streak is just wide enough to make it work.

I worked in the office from 9-345.  I got a lot of things done.  When it was time to leave, the sky glowered down at me, heavy and ready to thunderstorm.  I walked to the train and by the time I got to my final stop, there was a downpour of biblical proportions happening.  I was wearing a sleeveless dress and somehow had to keep my PICC line dry.

I walked around the train station while I formulated a plan.  I eventually shortened the strap on my brief case all the way and then closed my arm into the briefcase.  I ran through puddles in high heels like a boss and I’m sure I looked ridiculous but my PICC line stayed dry. 

The dogs played for a while in the yard after I got home and for no particular reason, I felt victorious.  I worked almost an entire work day in the office.  I got myself home without paying for a cab in ridiculous heat.  Physically, the heat was killing me, but I made it home in one piece and in no apparent danger. 

On days like today, I think maybe there’s no limit to what I can do.  I think maybe even though it felt like it, there were never any limits at all.

Intersecting realities

It has been a long time since I had a good summer.   Several years, at least.  The last few years, I have said, “This summer has to be good, to make up for last year.”  They never were, though. 
Part of it is the heat.  I like the idea of summer, but the reality is that the soaring temperatures put me into a constant state of reactivity.  Part of it is history.  My cousin hanged himself in July of 2011.  It was a month I will never forget.  Whenever the air gets sticky, I think of him in his hospital bed, and me waiting for him to die.  In order to overcome the general physical difficulties and emotional entanglements of those sweltering weeks, the fun I have can’t just be good, it has to be fantastic.  So the bar set for summer fun is quite high. 
I was in the hospital when the weather started to turn warm this year, and I wanted to be happy that summer was coming, but instead I steeled myself for months of regret.  I always want so badly to enjoy it, but I inevitably find myself wishing it were over.
This summer has had a very surreal quality to it.  My health has been quite terrible.  I have been nauseous and bloated and bleeding and exhausted.  I have needed a lot of rescue meds, a lot of Epipens, a lot of IV fluids and push meds.  My aunt died very young after a brief, severe illness.  Someone very close to me stole from me.  My lows have been low this summer, to be sure. 
But I went back to Seattle this summer, and that trip was the truest expression of magic I have ever encountered.  We really caught lightning in a bottle for those five days.  The entire experience was otherworldly, in a way that I can’t properly articulate.  It was a beacon of love that I badly needed. 
And my cousin got married this summer, and being around people who love each other so much is inherently healing.  I will never forget how happy I was that day.  I am so grateful to have been a part of it, and as hard as it was on my body, it did wonders for my soul.
This past Wednesday, I went to a water park with two of my oldest, dearest friends, who are brother and sister.  We have known each other since September of 1988, when I met him at Catholic school kindergarten.  It was very, very hot and humid last Wednesday.  The combination of heat and sunlight is potent.   I took a lot of premeds and still felt sick for a good part of the day.  I was worried about my PICC line getting wet, under its Drypro cover. 
Late in the afternoon, we waded into the wave pool and for the first time in a year, I swam underwater.  Slipping under the surface washed all of the worry and fear away.  It was rejuvenating and wonderful.  I treaded water as the waves came and surrendered as they crashed around me.
When summer ends, I usually find myself mourning.   I would focus on the things I couldn’t do or the bad things that happened, all the ways summer had wronged me.  It is so easy to tally all the ways my body and the world failed me.  I would mourn the fact that it wasn’t better, and that once it ends, there is no chance that it will improve.  Those summers are permanently marred in my memory. 
This summer was different.  I found my soul again.  It feels very much like I pushed my hand through the veil that separates the worlds and found that sometimes I am living in all of them at once.  It feels like this reality briefly intersected with realities where I am strong and healthy, and I unknowingly walked through all the places where they met.  This living in several worlds at once is confusing and painful, but it is also empowering and truly magical.  I think it’s the only way to be. 
This year I’m not sad because my summer was miserable.  This year I’m sad because this summer was heartbreakingly beautiful, and like everything else in life, it ended much too soon.

Early arrival

I like summer in theory.  I am always grateful when it’s not so cold and snowy anymore, but I quickly remember why I don’t like summer.  Even years before I knew why, I knew that it made me sick.  I spend a lot of it barricaded inside, with the relative safety of my air conditioner, but even my short trips outside cause trouble.  I have had to be driven to work most days this summer and often took a cab or arranged a ride home.  On days when I took the train, there was always the risk that I would throw up.  Heat is so hard on my body.  When I arrive home, I am sweaty and flushed and nauseous.  It’s not my best look.
The weather in Boston has been cooler than usual for mid-August.  Instead of blistering heat and high humidity, it has been high 70’s and breezy with clear skies.  It is like an early September, a gift to those of us who can’t handle the heat.  I have walked 3-4 miles outside each day this week.  Today, for the first time since April, I took the train both to and from work, then took Astoria for a long walk.  I sat outside as the sunlight waned and it was cool and blissful. 
Fall is easily my favorite season.  I like the symbolism of leaves changing colors and trees growing bare.  I like watching horror movies every night in October.  I like picking apples and going on hay rides.  I like haunted houses.  I like the coolness that creeps back into the air.  I like wearing sweaters and boots.  I like the smell.  There is no smell quite like New England in the fall.
Every year, when I wake up on September 1, I am relieved that I made it through the summer.  I often have fun during the summer, but I am always uncomfortable and exhausted.  I have to expend my energy carefully, lest I push myself too far and need weeks to recover.  In the fall, I take long, long walks, walk through the crowds of tourists in Salem, figure out a Halloween costume and drink my weight in Pumpkin Spice Lattes.  (Which I don’t react to – more proof that autumn is the universe’s gift to me!) 
People with mast cell disease are so often at the mercy of the elements, wind and water and sunlight.  But when summer winds down, I get these months of feeling good, of not being exhausted, of not flushing.  This is the one rule my disease has always observed – it gets to be unpredictable in every other way but this one.  Fall is mine. 
Maybe having mast cell disease sucks, but fall arrived in Boston two weeks early, and for me, that’s pretty damn great.