The Cathedral of Belief

I have a GI bleed. This isn’t new or surprising, I have had bleeds off and on for years. But this is worse. Worse enough that I called to ask at what point I should go to the hospital. After some back and forth, we decided I could stay home as long as it wasn’t enough blood loss to significantly drop my BP or to alarm me personally. So home is where I am.

After approximately 4,679 phone calls and emails, a scope was scheduled for me for this week. Similarly, I have previously had 4,679 scopes. I am a frequent user of hyperbole but I honestly can no longer remember how many scopes I have had. I have had several flexible sigmoidoscopies, several full colonoscopies, a few proctoscopies, several endoscopies and the very rare and elusive colonoscopies via stoma. It’s like my own demented version of Pokemon Go except they don’t happen outside and I have to drink two bottles of what smells like lemon Pledge and I never wanted to catch them all and it’s all bullshit.

Despite the general terribleness of my GI tract, which is, as a general rule, quite terrible, things are improving. I’m not sleeping all day. I am getting back into a rhythm of sleeping at night. My cousin found me a protein shake mix that I can drink safely and which tastes good instead of the least bad. I’m not bruising everywhere and haven’t had blistering hives for a while. I have gained back a few pounds which is a good sign.

I also finally feel like I have my mind back. For me, it has never felt that my actions were what anchored me to my place in the world. It is my thoughts that ground me. We are never more wholly ourselves than when we are in the labyrinth of our own thoughts. We are what we think because what we think turns into what we believe.

Belief is a powerful thing. Maybe the most powerful. It is that ether that makes us more than our bodies and that holds us together when those bodies fail us. Believing strongly in a choice you make confers upon you the ability to make the most of that choice. The power of the words swirling around your mind cast a magic upon it that makes that path stronger and you stronger for being on it. It makes it easier to be grateful and to be happy.

I struggle a lot with my personal outlook and how I portray my life to others. Specifically, I struggle with being happy and what that means for me. I am happy, often. But there’s a guilt there, that I know my experience is sometimes dissected and applied to other rare disease patients for whom this may not be their reality. I don’t want people to think this life is easy just because I’m happy. And there’s an anger there too, that I shouldn’t be happy when I am frequently so sick and my friends are so sick or the existence of rare disease patients is so very precarious. There is a sharp side to this happiness.

What if I had chosen this life? What if I had somehow chosen to have these diseases and the broken elegance of this struggling body and everything else that came with it? Would believing in that choice have given me the strength to feel happy without this internal conflict?

I didn’t choose this life. But recognizing that it is still a good life is a choice, too. A powerful one. Maybe the most powerful.

More; or, Yzzy’s story

I can understand most things if you can drop it into a living system. If a body can do it, I can imagine it. But there is this thing about the inner dynamics of the human organism: that the more you study it, the less obvious causality is. There is no one way to arrive at an end point. There are dozens.

The body is clever. It is redundant. It learns. If it wants to, the body will find a way.

Mast cell disease is largely a consequence of this fact. Every patient has encountered this. If you treat a symptom with a med, it will crop back up a few months later. If you arrest mast cell production, your body finds a way to circumvent it. If you get stable at a certain dosage, you eventually need higher doses to achieve the same effect.

I think about the intricacies of my body and my diseases almost constantly. Every time my body does some new mysterious and irritating thing, I run through the various possible causes. I try to determine which pathways I have blocked and which can still be used to injure me. The body is cunning. It has many tools at its disposal that can be weaponized toward a singular goal.

But there is a flip side to this ingenuity: we are more than just our bodies.

I first met Yssabelle Eddlemon when she was airlifted to Boston from Oklahoma right before Christmas a few years ago. I had spoken with her mother both online and on the phone prior to meeting her. Yzzy and I had a lot in common. We both had major colon involvement, frequent anaphylaxis, persistent anemia, ports, an ever dwindling list of safe foods, and a short supply of treatment options not yet tried. But she also had mastocytosis in her skin, major liver involvement, and such severe airborne reactions that she mostly lived wearing a mask. And she was five years old.

I became friends with Yzzy’s mother in the way that you do when your lives are miserable in similar ways. I became more involved in Yzzy’s care in the way that you do when you don’t want a kid’s life to be miserable in the same way yours is. I spent a lot of time reviewing her labs and pathology reports and learning about her. She became one of my little people.

She was seen by a ton of doctors, all of whom agreed she was very sick but didn’t know what to do about it. Her implanted port remained used for months after it was placed because no one wanted to be responsible for it. She was in and out of the hospital with anaphylaxis that closed her throat in seconds on a weekly basis. It was a struggle to keep her alive.

Eventually, Yzzy was able to get into a pediatric mast cell specialist in California. Things changed a lot, in a good way. Her meds were revised significantly. IV meds were prescribed to help manage anaphylaxis. The difficult decision to completely remove oral nutrition paid off.

After a few months on TPN (nutrition given completely by IV), she stabilized a lot. A scope done before starting TPN showed that she had confluent sheeting of mast cells in her colon – literally wall to wall mast cells in her colon tissue, so many that they couldn’t be counted. After a year on TPN, her colon biopsy was normal. For the first time, Yzzy was stable enough to go to school for half days while her mom stayed close by. She made friends and loved school. Her quality of life improved dramatically.

Then something happened that I did not expect: she started having these bizarre episodes of crazy high fever and hemolysis. The first few times, we thought it might be her central line so it was treated as an infection. But it kept happening and it became pretty obvious that this was not an infection. There are so many ways for the body to arrive at a sudden fever. No one could figure out the cause, including me. There were too many possibilities and not enough evidence to justify any one of them.

Patients with central lines are advised to go to the emergency department if their fever is over 100.5F. Yzzy’s fevers were sometimes over 105F. She would be brought in only to be sent home in the morning with no treatment and no explanation. She was also deteriorating in other ways. She had to stop going to school. Bizarre symptoms and bloodwork abnormalities piled up.

All said, she was brought into the ED 22 times over the span of several months before anyone figured out what was going on. Last fall, Yzzy was diagnosed with another rare blood disorder: hemophagocytic lymphohistiocytosis. Her immune system was eating her blood cells.

Things happened fast after she was diagnosed. She had suffered significant damage because HLH had been untreated for so long. They initially tried biologics and high dose steroids but the episodes continued. Then they started chemo. It was around this time that we started to grasp the eventuality of the situation. HLH can be fatal. Treatment was slowing it down but it wasn’t stopping the attacks enough to protect her life. She was going to need a transplant.

The weeks after the decision to proceed with transplant were tense and grim. She was frail and the chemo was making it worse. She lost all her hair. She swelled badly from the chemo and steroids. She had a recurring upper GI bleed. She was admitted most of the time. Managing both her systemic mastocytosis and HLH was complicated. Coordinating care across specialities was difficult and frustrating.

Yzzy had a rare stroke of good luck then, one so good that I actually cried: the search for bone marrow donors turned up three possibilities, two of them a perfect match. The transplant was scheduled for just after Christmas. She was discharged so she could spend some time at home before being admitted for several weeks for the transplant.

In early January, Yzzy underwent a brutal course of induction chemo. She developed major clotting issues and severe anemia. A second central line had been placed and was constantly problematic. She was miserable. But she made it through. And on January 12, she had the transplant.

Bone marrow transplants are dicey for the simplest patients. Yzzy is not simple. The risk for serious complications and death were significant. But it was the only option to manage her aggressive HLH. There was also a silver lining, a big one. If the transplant worked, it could cure not just the HLH, but her mast cell disease.

It is impossible to overstate how much we expected a disaster. But there wasn’t one. The transplant went perfectly. In under a week, we started seeing signs that her the transplant was making blood cells for her. In under a month, the transplant had engrafted and replaced her old bone marrow. She stopped having mast cell reactions. She was weaned off her continuous benadryl drip. She started taking oral meds instead of IV. She started trialing things for oral feeds. Her TPN infusion time was decreased. For the first time in years, she was not attached to an IV line 24 hours a day. And her HLH was long gone.

Yzzy has never known a life when her body wasn’t trying to kill her. She’s not old enough. Her body has damaged her organs, caused seizures, and repeatedly sent her into shock. For seven years, Yzzy’s body found ways to work around every treatment, every medication, every change that was made to keep her safe.

But we are more than our bodies. When her team discusses her care plan with her parents outside the door to her hospital room, she plays video games. When she isn’t strong enough to walk around, her parents drive her around to catch pokemon. When she is puking constantly, she plans the menu for a day when she can eat. This is her life and she just lives around it.

Yesterday, fifty days after her transplant, Yzzy went home. She joined a Girl Scout troop and is aggressively selling cookies online. She is making plans for her birthday party in May. She is happy to be home and reunited with her little brother. She is having Nerf gun fights. She is strong enough to run around and can laugh without risking anaphylaxis. This is the dream.

Yzzy is more than her body. And her body was no match for her.

The Unholiday; or, Rare Disease Day

I have multiple rare diseases. I have been living as a rare patient since January 2012 when I was initially diagnosed with mast cell disease. I have collected some other rare diseases for my menagerie in the years since: adrenal insufficiency; Ehlers Danlos Syndrome, hypermobility type; Postural Orthostatic Tachycardia Syndrome; and mixed connective tissue disease with features of lupus and rheumatoid arthritis.

February is Rare Disease Month and the last day of February is Rare Disease Day. MastAttack originated as a exercise in educating people about mast cell disease with daily facts for Rare Disease Month. Over time, I moved those facts from my Facebook page to a blog. That blog evolved into the MastAttack you are currently experiencing.

I have planned for the last few years to do a daily posts in February with each post discussing a different rare disease that affects some mast cell patients. The fact that I was only able to get up two posts (and not even on consecutive days) is a pretty good symbol for what it is like to be a rare disease patient.

Despite recognizing its importance, I feel conflicted about Rare Disease Month. It’s not the visibility that bothers me because I committed to living my life very loudly years ago to empower myself and others in the mast cell community. It’s the transience of the focus. In February, people are inundated with stories about living and dying with rare disease. But on March 1, I’m still going to be here, with these diseases, and friends with these diseases, and the fear and uncertainty that goes with them.

This is not a celebration. We are not celebrating rare disease or even rare disease patients. This is a protest. A march. An event to record that we were here. A memorial, to remember those rare disease patients we lost this past year and all the years before. And a prayer, a deep and primal hope given to the universe that there will someday be a world in which there is no need for a Rare Disease Day.

Thank you for reading our stories this month. Thank you for learning about our diseases and our lives.

Remember us after today. Remember us every day.

The silence and the void

I am struggling a lot with grief lately. As it has become increasingly apparent that my life and my body will never be the way they were before, I have thought a lot about what that means. How they are different. If I can live with it. I think few things cause as much personal revelation as grief. Every fear is amplified. Every dream is farther away.

I had such a firm idea of who I wanted to be. I knew exactly. I wanted to be a doctor and travel around the world. I wanted to get married and have kids. I wanted to treat infectious diseases. I wanted to live in twelve countries for a month each to live abroad for a year. I wanted to buy a little house and paint it purple. I wanted to have a home where every shelf was low enough that I could reach it without standing on something. I wanted to be happy. I wanted a quiet little life with a rewarding career and children. I knew the life I wanted. I loved that little life.

You do not naturally love the things that populate the set of your life. You do not love sitting on the couch. You do not love drinking water. You do not love walking your dog. You do not like to breathe. You do not love every moment when your throat isn’t swelling. The moment you begin to love these things marks a fundamental change. It happens when you glimpse a life beyond the veil, a life where you can’t take out your own trash or drive or clean your apartment. Everything you do is imbued with a frantic appreciation. You come to love these things but you wish you didn’t have to.

I really loved my life. It was beautiful. It was warm and full of possibility. I wasn’t grateful for breathing or waking up to an alarm clock because I didn’t have to be. I could never have imagined how bad things would get and how hard it would be to become a different person with different goals and different dreams.

It has taken me years to build a new life. Nothing beautiful is easily repaired. There is beauty still but it is deeper and less obvious. It is not the excitement for the future. It is not the having of things and opportunities. It is the rare moments when you aren’t struggling. When things are wrong but not more than usual. When the pain is managed. It is the kind of beauty you can only find when everything around you is burning. Beauty is nothing. It is a feeling. It is silence and a heartbreaking void where you can rest for a little while.

I am trialing a new biologic tomorrow in the hope that it will help me to eat again. I am scared that it won’t work. I am scared because I don’t think I can live like this. I am tired.

There is still beauty in my life. It is just harder to find it when every minute is a struggle.

Choosing the sun

I don’t handle change well. I have never liked it. A few years ago, I bought a little piece of wall décor that says “Embrace change.” It hangs next to my bathroom sink. Whenever I stand in front of the sink, I catch myself shaking my head as I read it. I keep it up mostly for irony.

My body doesn’t handle change well either. Lately, it is doing things that it has never done for reasons I can’t determine. Last night, my face swelled as I was reading on my couch. I didn’t have any other symptoms and still don’t know why it happened. I sat up for hours, compulsively poking my face and trying to determine if other parts of my body were swelling, while trying not to panic and induce symptoms that could be confused for anaphylaxis.

I’m starting to realize that I’m not having a bad episode that will resolve and return me to my previous baseline. This is different. I am different. My body and my disease are evolving. Whatever baseline I arrive at will be different from before. I can’t wait this out because it’s not going to end. I will stabilize but I will not be the same. My body will not be the same and my life will not be the same.

So it’s time to stop waiting for this to end. I have to learn how to live my life like this. I have to learn how to fit all the things I love and that bring me joy into this smaller space. I have to find a way to get light in here again because this darkness is suffocating. It has swallowed so many things.

I have spent a lot of time staring into this darkness in the last few months. Some of it with an audience, rehashing it for paramedics and ER doctors, mulling it over with my care team. Most of it alone, in moments when I can’t breathe, suddenly struck by the fact that this disease will almost certainly kill me.

But there are bright spots, even if they seem farther away as the arc of my life grows longer. Good days and moments of joy and traveling. Touching the Great Wall of China. Eating Reuben sandwiches. Walking 60 miles in three days. Encouraging words. Hugs. Seattle. Roller coasters. Kindness. Alone these moments are just tiny flecks of light, but you can gather them. If you string them all together, you can make a tiny sun.

It was really warm in Boston this week, almost 70 degrees Thursday and Friday. I packed up my infusion pump and meds and supplies and walked to the beach with Astoria as I infused IV fluids. I sat in the shade at the beach wall as she ran around, flailing around in the sand and playing with her ball. We walked slowly. We didn’t stay very long. But we got there.

The sun only grows if you feed it. Otherwise, those moments are just holes in the dark.

This is my life now. I am learning how to enjoy it. I am choosing the sun.

Wellness

I do yoga everyday. It is the form of exercise most suited to both my limitations and my needs. I suppose also well suited to my personality. On days when I feel strong, it lets me balance on my hands and fly through the air. It lets me draw my legs up from my core and see the world upside down. On days when I don’t feel strong, I lay my weight into various muscles, stretching them back to their right shape. It lets me think it’s exercise even when all I can do is sit on the mat and breathe. An achievement instead of survival.

On Thursday afternoon, while waiting to check in for my appointment with my mast cell GI specialist, I had anaphylaxis. I was standing and wasn’t immediately sure if it was anaphylaxis or POTS because they both start with a fuzzy lightheadedness. I sat down on the floor and within a few minutes, it became obvious that this was definitely anaphylaxis.

I told one of the admins that I was having anaphylaxis, took a few steps into the bathroom, lay down on the floor and used an epipen. They called a code team and very quickly there were a lot of people. I drew up and pushed some IV meds. I was already infusing IV fluids. They took me to the ER where I stayed for several hours to be sure I wouldn’t rebound or have a biphasic reaction.

The resident asked if I knew what the trigger was for the anaphylaxis. “I think standing up,” I said. It was funny in the way that terrifying things are sometimes funny.

My body is so different now. In every way, it seems. I buy new clothes online because everything I own is too loose or ill fitting. As I put them on, I find all these sharp places beneath my skin, angles where there used to be a softness. The layer of fat over my muscles has thinned considerably. It has the strange effect of making me look stronger and more toned when really I am just unhealthy.

I write constantly and so I always have a journal in reach. I was recently looking through previous entries for something. I was struck by how often I speak of my past self in the third person. I talk about myself like a character. Like I’m the narrator in a story that doesn’t involve me.

I say that I am a different person now because it’s easier to believe that the person I was then could never become the one I am now. It is easier to think that this person is entirely separate for a lot of reasons but mostly so that she could never decay like this. It is much harder to accept that I was that person that did all those things and that I am still that person and never will again.

The days are getting longer and warmer. My mind is working better. My body is well enough to be out of the hospital. I can’t keep down much elemental formula but can get down some nutritional drinks and plain potato chips. I am starting to make plans for later this year that I believe could be realistic.

Every day, I roll out my purple mat. Today I can only do a little and tomorrow I will only do a little but one day, I will be strong enough again to fly.

 

Wellness

 

(PS: Hypermobility much?)

Under the light of a strange moon

Long before science gave us the knowledge that the universe is populated by revolving celestial bodies, people attributed many things to the magic of the moon. A bright, shining globe traversing the sky and controlling the tides, it was blamed for all manners of catastrophe and natural disaster. The sky and all the things that live there are still frequently seen as symbols of a larger truth. My own writing is littered with examples of this.

Last night, there was a full moon, a lunar eclipse and the close passing of a comet. Even the eclipse felt unusual, a threat of darkness across a snow moon bright over Boston after a barely finished blizzard. It was a fitting end to an unusual week.

A friend who also has SM came to town for a family emergency. She had planned to stay over for one night but we had a blizzard so she stayed over for three. We hung out and played with the dog and watched documentaries. We chatted about some exploits we plan to undertake when we can collectively get our health issues to stabilize. We went to Disney World a few years ago and have always planned to travel abroad at some point.

I started trialing elemental formulas last week. So far, everything I have tasted has been vile. I can force myself to do a lot of unpleasant things but I cannot get much of it down. I am back to Orgain protein with almond milk and maple syrup. My doctor approved adding back in plain potato chips to help with getting in calories and fats so at least I don’t feel like I’m starving all the time.

Some things are improving. I’m not vomiting every day. My lower GI issues are largely the same but my bleed has slowed. I’m still tired but my stamina is increasing. I have had to step up pain management but no major reactions or anaphylaxis. I have appointments this week to determine what the next step is. I’m starting Xolair soon and am hopeful that will allow me to eat more normally.

I have spent a lot of time speculating about exactly why I got so sick so fast. Pesticides from getting spraying are a possibility. But there are lots of other possibilities, too. Stress. Overall damage to my GI tract. A sudden reaction to something I previously tolerated. A strange moon.

It is hard for me to accept that my disease doesn’t need a reason to worsen. I can do everything I am supposed to and still get sick.

Allergic to alcohol

I am allergic to alcohol. I can get away with small exposures, alcohol on my skin or my port line claves, the antiseptic coolness. Ingesting it is a different story. My last sip of alcohol was the day of my cousin’s wedding before the wedding party headed to the church. Champagne bubbled in pretty flutes that we raised to toast. I took a sip, the tiniest sip, with the bride and the other bridesmaids. As soon as the champagne hit my tongue, my entire mouth went numb. I sit it out and never drank again.

I was never a big drinker. Partly because I didn’t like the taste – I was well into adulthood before I discovered how to make drinks that I enjoyed. Partly because I was so prone to hangovers. Mostly, it was because my family has a long and sordid relationship with alcohol.

Alcohol has always been part of my life. It is the buzzing undertone to a million memories. It is the cousin that gets you in trouble, that tells lies about you that everyone believes. It looks like it belongs and by the time you realize it doesn’t, it is too late. It has hooks and claws in everyone, trapping them together and pulling them apart.

I was wary of alcohol more than any other drug because I had lived with the horrors of alcohol abuse. The screaming, fighting, slamming, breaking, volatile, relentless horror of alcohol abuse. The secrecy and the denial and the despair of alcohol abuse. It was in my home growing up. When I was a teenager, I dated a man 8 ½ years older than me who had a raging drinking problem. Friends, cousins, uncles. I knew all about the danger of being in the blast radius.

I tried to cultivate a casual drinking habit when I turned 21 but I was never very good at it. Being able to experiment and broaden my palate helped. I liked novelty beers, like Wachusett Blueberry Ale. I liked pumpkin flavored beers and hard ciders. A friend of mine was a big wine drinker so I learned about wine. I liked buttery white wines, rieslings and chardonnays. Red wine made me sick. Plum wine with Japanese food was a guilty pleasure, one of the few alcoholic beverages that I still miss. I could drink beer or wine but almost never enough to get drunk.

I liked drinks made with Kahlua, White Russians and such. Vodka only if it was mixed with something strong enough to cover the scent. Dark rum for Dark and Stormies. Amaretto and Bailey’s to mix with coffee. Mixed drinks went down much easier. I could have a couple of drinks socially but I just didn’t really want to most of the time. The few times I really indulged made me horribly sick. Puking for days, GI pain and headaches for days. I didn’t know then that I was reacting to the alcohol but it made it easier to completely stop drinking.

I am five years older than my sister but the age gap feels larger because we were further apart in school. She was always a drinker. I spent a fair amount of her teenage years tracking her down and picking her up when her friends called me. I would get calls in the middle of the night from her friends who recognized that she needed help but didn’t want to get her in trouble.

If my phone rings after midnight, I get palpitations. I spent so many nights afraid that she would drink herself to death. The fear that her drinking would kill her is still so fresh.

Last year, after several particularly nightmarish months, my sister got sober. She became heavily involved in the recovery community and went to AA meetings everyday. Her sponsor started working through the twelve steps with her almost immediately.

I met her sponsor a few months after my sister got sober. She came to my little apartment on a Wednesday, an hour or so before my nurse would arrive. We talked about the recovery process and ways for family to support alcoholics in recovery. She asked if I drank and I told her no, that I was allergic to alcohol.

“She’s allergic to alcohol, too,” she said, referring to my sister. “Both of your allergies can kill you.”

It is hard for many people to view addiction as a disease and not as a series of elected choices. But there is compelling support for the model of addiction as a neuropsychiatric disease. An imbalance of neurotransmitters, a nervous system that betrays you. One of the neurotransmitters thought to be involved in addiction pathology is histamine.

Mast cell patients are familiar with the psychiatric effects of mast cell reactions. We call it masto rage but it has a real name: mixed organic brain syndrome. This condition was first described in the mid-80’s in a patient who had a psychotic break secondary to systemic mastocytosis. When I react, I get anxious, paranoid and nasty. I perseverate. All of these symptoms have been attributed to histamine release.

Mast cells are involved in a lot of things. I don’t know that I think addiction is a mast cell driven disease but I think it’s an organic illness and not a choice. Our allergies to alcohol are different sides of the same coin. My allergy is treated with benadryl and epinephrine. Hers is treated with twelve steps and searing honesty.

Last Friday, I got to watch as my mother presented my sister with her one year chip at a meeting of her AA home group. My sister has a job she enjoys and just started night school for her MBA. She is happy.

I am allergic to alcohol. So is my sister.

Kristin's One Year

Flame

A few days ago, while I was walking my dog, I thought I saw my best friend’s father. He died two and a half years ago after a series of complicated health issues. I had known him for 25 years.

After not seeing him, I started thinking about the last time I saw him. It took me a while to remember when exactly that was. I thought of events we both attended, weddings, birthdays, and backyard fires on summer nights.

The last time I saw him wasn’t at an event. A few weeks before he died, I visited his daughter and walked upstairs to say hi to him and his wife before I left. It was painfully ordinary and completely unremarkable. Just another autumn day, only noteworthy in retrospect. I had no way of knowing that it was the last time I would see him.

I find myself wondering lately if today will be the last time I do something, some small thing that formed the rich backdrop of my life. I also find myself wondering how many things I did for the last time without realizing it. It’s so easy to do, such a slippery slope. One day, you’re tired and you want a break. Not a forever break, just a short break. So you decide that you won’t do these things today. Letting things go for one day is fine. And so you do. You let it go. You put it down and you never pick it back up again.

When was the last time I didn’t have abdominal pain? When I felt healthy? What were those days like? What did I feel? What animated the world around me? I can’t remember. Years from now, when I look back, I won’t remember this moment either, or the meaning of these words. I won’t even remember writing them. How can any of this matter so much when I won’t even remember?

Every patient has a line where they stand their ground to not lose anything else. Every patient decides that this position must be held for as long as possible and that once this line is crossed, you can never go back. This is how I feel about eating. This is my line. It’s not that I can’t live with a feeding tube or on IV nutrition. It’s not that I find either of these options particularly repulsive. I just want to be able to eat. Such a simple, primal thing.

I have always felt that I have this little light inside of me, really deep, beneath all the swollen and damaged places. It has been dimming for years now. I have been cupping my hands around this tiny flame to keep it alive. But I can’t keep out the wind forever. I am only one person. And I am so, so tired.

I am afraid that I am approaching the last of the days when I can eat. I am afraid that this little light will wink out and nothing will replace it.

Skinny

My body is my adversary. I hardly remember a time when that was not the case. Even before I got sick, I struggled to make my body do the things I wanted it to. You can only do that so much before you begin to resent these shells we live in.

I was a small child, very small. I wasn’t four feet tall until eighth grade. That year, I grew a foot, and never again. Throughout elementary school, people commented on how small I was and how little I weighed. I was limber and very nimble; together with my lack of height, these characteristics gave me the body of a gymnast. I did splits and back handsprings and aerial cartwheels in my living room and backyard. I threw tricks during recess. I weighed so little that very little strength was required.

In seventh grade, I acquired the body of a woman overnight. I took ballet classes at that point in a small brown building around the corner from my house. One day, I caught my reflexion in the wall mirrors. I was rounder, with thick legs, breasts and a forming hourglass figure. I was still short but I wasn’t small.

I lamented the loss of my tiny frame but I wasn’t overly concerned with toning or losing weight. I walked a lot and was active if not athletic. In 2000, I started getting a three month birth control injection. In the months that I followed, I gained 26 lbs. I went from being thicker to being fat.

I was very unhappy with my body throughout college and grad school. I worked more than full time and carried a full course load. I picked up better eating habits when I got an apartment but I didn’t have time to exercise.

In 2007, I woke up in the middle of the night and while walking across my living room carpet to the bathroom, I realized my ass was jiggling. It actually stunned me awake. The next morning, I signed up to walk the Breast Cancer 3-day, 60 miles in three days, largely for the fitness aspect of the event. For the next six months, I walked increasing distances 3-4 days a week and did short workouts on the other days. I didn’t change my diet at all except for not drinking coke. I lost 25 lbs and gained a lot of muscle.

The summer of 2007 stands out for me as a time when I was happy with my body. I was still bigger than I wanted to be, but I was actively losing weight and felt much stronger and more able. I went backpacking in Scandinavia and was on strenuous mountain hikes without trouble. I took up rock climbing. I completed the 3-day and continued with the training schedule. Over the next three years, I would walk four more 3-days.

In 2009, I lost most of my hearing. I ended up on high dose oral steroids for a few weeks and quickly gained 20 lbs. My face was squishy and I was swollen everywhere and nothing fit anymore. At the same time, my disease was also accelerating. I still walked and tried to make time for yoga class but I was in a lot of pain and often too exhausted to work out. I gained more weight. And more.

By 2012, I weighed about 165 lbs. I started doing advanced yoga several times a week and was able to lose 10 lbs in about nine months. The following year, I had my colostomy placed and lost 10 more lbs. I was stably 145 lbs until the end of 2013 when I started high dose steroids again along with several other meds known to cause fluid retention and weight gain. I gained 30 lbs in six weeks and then gained a little more. My abdomen was so swollen that I looked nine months pregnant. I had to wear maternity clothes to accommodate my belly.

Decreasing steroids took off some weight but I was still much bigger than I wanted to be. In 2015, I had another GI surgery. I again lost 10 lbs almost immediately. Following the surgery, I was able to do a reconditioning program before I returned to work in order to build up my stamina and physical tolerance for exercise. I was less inflamed than before the surgery and reacting less. I was able to address several smaller concerns that had been on the back burner like vitamin D levels. Together, these changes allowed me to recondition effectively. I could exercise again, making it easier to manage my fitness. (For those interested, I describe my reconditioning program here.)

Over the next 18 months, I lost another 10 lbs. I found long, flat muscles in places I never expected to see. Even as I cursed my body for having this disease, I was happier with how it looked. I had to buy new clothes because even my smallest clothes, saved from previous years, were too big.

Last fall, I started dropping weight, much faster than I should have been. At the same time, I was having fevers, night sweats, and a slew of other symptoms I have written about. I countered the weight loss by eating more but I eventually developed gastroparesis and started throwing everything up. I am now getting some of my calories through 2L of IV fluids daily. I am now getting most of my calories from “nutritional drinks”. (My homemade version is Orgain chocolate protein powder, organic maple syrup, and almond milk.) I am tolerating it but I can’t drink it fast without getting nauseous. I’m not getting much fat in my diet and my body is now showing that.

I took a picture of myself tonight. For the first time, I was unsettled by how I looked. I am getting very thin. I am the smallest I have been as an adult. I can certainly lose more weight before I’m in danger but it was seriously jarring to see myself. I am leaving “you don’t look sick” territory.

So here I am at 3am thinking of ways to gain back weight that I spent years trying to lose. A different kind of adversary.

 

29 Jan 2017

29 Jan 2017 2