Privilege

My body is changing. I am tired but do not sleep for twenty hours at a time. Bones and angles emerge as my swelling wanes. I exercise. I eat real food. I sleep at night.

At the same time, I am carefully engineering to encourage these continued changes. I still take a ton of medication. I still need IV fluids every day. I still need IV meds. I still need to manage my pain. I still need to be careful. This nethervoid I currently inhabit might never be mistaken for healthy, but it is healthy for me. It is stable at least, predictable. It is good for me.

Last week was composed of the oppressive, sticky summer days that Boston is known for. Heat, humidity and sunlight form my own personal triad of doom. I got halfway through my short walk between stations and started reacting badly. I went into a Starbucks and promptly threw up while hives appeared on my neck. All of my exposed skin was bright red. I took some Benadryl and drank some cold water and waited for things to calm down. They did. I continued on my way to work.

It is hard for me to gauge how bad I look on any given day, as I was for many years in a persistent reactive state. My only indication is that initial surprise when people look at me, that flash of concern as their eyes widen, a brief moment before they recover. I knew as soon as I got to work that I must look terrible.

We have a cold room at work that is essentially an enormous refrigerator. “Girl, you need to go stand in there,” one of my coworkers said with a supportive nod. So I did. It helped. When I emerged, multiple people told me they were worried I would anaphylax and to please take a cab home. I am so fortunate to work with this group of caring, wonderful people that understand my disease and want me to be safe.

I did end up taking a cab home. I didn’t want to, but I did. It’s hard for me to articulate why I didn’t want to, when I knew it was safer and easier, in a way that doesn’t make me sound crazy. Getting in that cab made me sad in this nebulous but palpable way.

Taking the train to work is a privilege. Going to work, cleaning your house, paying your bills, food shopping, making dinner, eating solids, crunching lettuce as you watch television, being part of the world. These are privileges. These are the things you miss when you are hospitalized or so tired that your whole body feels heavy or riding that knife’s edge of anaphylaxis because your body is fighting you on something you need to do.

All of the days you spend fighting – this is what it is for. You fight for these privileges. You fight to be in the world. These are the things you will miss. All you can ever hope for is to wake each day to a world full of mundane privileges.

Some days I want to take the train even if there is a chance I will get sick. Because there is a chance that I won’t. Once that was impossible. Maybe it will be again. Maybe tomorrow it will be impossible, but not today.

I am still sick. I am still in pain. I still have a poorly functioning GI tract. I still carry two Epipens and a backpack full of meds everywhere I go. I am still nauseous. After all of the effort put forth in the last three months, I did not get cured. I got to walk to work sometimes. I got to eat salad. I got to feel the sunlight on my skin. That’s what I got. And it’s enough, and even more than it’s enough, it’s amazing. All of this is amazing. I am alive this summer and I am alive in the heat and I am alive when I’m too hot and I’m alive in the sun.

You cannot always decide what you do, but you can always decide who you are. I cannot always walk in the summer sun, but I am always a person who wants to.

I choose to live in the world and to enjoy it and be alive. I choose this even when it might hurt me. I choose this even when it might kill me. It is where I want to be.

It is a privilege to participate in this world. It is a privilege to be alive.

The shadow edge

I was in the process of applying to medical school when it started to become obvious that I was sick. I chose not to complete the application process out of fear that I would be accepted and too sick to attend. I ultimately got much worse and would definitely have been too sick for medical school. As it turned out, I was sick for several years. And in the last couple of years, I have been too sick to do much of anything.

I am 31 years old. I finished school almost eight years ago. I have been sick for that entire duration. Somehow in my mind, being sick is recent, a brief interruption to my normal state. Eight years is not brief. I have now been sick longer than it took me to complete my undergraduate and graduate degrees.

In the middle of those years is the time when most people transition from one stage of life to the next. It is the time when you take fun vacations, go to parties, focus on your career, meet your significant other, marry. They achieve their earlier goals and move onto the next ones. They grow up, calm down and settle down.

I was sick for those years and never really made that transition. There is still a riot, loud and unyielding, in my heart.

I have dreams for 31, but I also had dreams for 25 and 28. When do you have to let them go? At what point do you not have enough time?

In some ways, it is easier when all of your dreams are washed away at once. It is harder to choose which dreams to lose. It is hard to accept that those years weren’t lost, but that they prevented me from achieving these things that are so important. Those years may prevent me from ever achieving some of them.

I feel a lot better these days than I have in a couple of years.  But now that I feel more functional, I find myself constantly taking inventory of life, of the things I never did and the things I might still be able to do, if I start right now.  It is overwhelming sometimes.  It feels like the shadow edge of hope.

I knew I would one day run out of time to do everything, that eventually pushing things into the future would mean they fell over the edge and disappeared forever. It just happened sooner than I thought.

This universe inside

Last summer I went to Maine with my sister, cousins and some friends for my cousin’s bachelorette party. I had a PICC line and couldn’t swim, was throwing up most of my food and the loop of bowel behind my stoma twisted on itself. I slept a lot and spent all day in the hotel room with air conditioning in order to muster enough energy to go out at night. I still had a good time largely due to good company, but it was a good time I fought pretty damn hard for.

This past weekend, I went back to Maine with the same group of girls with a couple of substitutions. We stayed in a hotel with a pool about 200 yards from the ocean. It was sweltering in a way that makes even healthy people tired. I crossed my fingers and hoped for the best.

On Saturday night, we all went out and had a nice dinner at a restaurant in town. After, I went for a long walk before bed. It was still hot and sticky out, but the wind blowing off the ocean felt like a big hug. It was one of those nights when you feel connected to the world. The waves crashed on the beach, this soft, wet percussion. The stars were bright.

It felt like I could look all the way across the universe. It felt like I could look all the way across my universe, the one I contain inside my body. I walked along the water and thought about my limits, the limits of that expanse.

The next morning, I deaccessed my port, put on my bathing suit and sunglasses, and went to the beach. I waded into the ocean. The water was cold, but not frigid. I floated in the shallows, rising and falling with waves. It was very serene.

I took some IM benadryl at lunch since I was deaccessed. I went swimming in the ocean again. I swam in the pool. I reaccessed my port. I ate a fancy dinner at a nice restaurant. I fell asleep at a reasonable hour, slept all night and woke up in the morning. The trip was completely uneventful concerning my health. My body worked fine the entire time.

It doesn’t feel like this is my body. It is like I borrowed one, a better model. It continues to demonstrate its new durability. Eating sweet potato fries with ketchup. Taking the train to and from work. Being in the office 3-4 days a week. Walking in oppressive heat. Swimming in the ocean. Thirty minutes of cardio. It is tolerant. Sturdy, even.

I am torn between being cautious in this capable new vessel and pushing all the limits. I am afraid of not knowing how far I can go. I am scared that all of this will go away.

But it’s here now. It feels like the universe inside me is expanding, the boundaries pushed further away with every beat of my heart.

Independence Day

I live my life as a series of wagers. A lot of these wagers involve my health. I bet that I can fly if I take enough steroids. I bet that I will get better if I get an ostomy. I bet that I will be more stable if I use IV hydration. I bet that taking this med or that will make me less tired. Sometimes I win. Sometimes I don’t.

The last 18 months of my life have all been one large scale bet. It has been many months of moving the pieces around and trying to shove them into place. It has been emotional and stressful and scary.

I slept through the four weeks following my surgery. I did some other things too, but mostly I slept. One day while I was resting in bed, it occurred to me that all of the strength and stamina I had lost was perhaps for the best. There are few opportunities to reset your body and this was one of them. I wasn’t reacting because I was heavily medicating and resting most of the time. I realized that this might be an opportunity to rebuild my body in a calculated way.

Once I was cleared by my surgeon to exercise, I started an exercise program designed for POTS patients. It was pretty detailed (I’ll do a separate post about this) but involved cardio exercise 3-4 days a week. I haven’t been able to do cardio in years. But I figured it was worth a shot.

The first two weeks were brutally hard. Then it got easier. I am now on the sixth week of a twelve week program. For the first time in many years, I can do cardio (with premedication in a controlled environment) without having a reaction.

I went back to work last week. I took the train to and from work on Monday, Wednesday and Thursday, which also involves about a mile and a half of walking each day. It was pouring torrentially on Wednesday and hot as hell on Thursday. I was exhausted when I got home but I managed to get through each day without napping. I slept every night last week. Getting myself to and from work is a level of independence I have not achieved in a year.

I very rarely drive anymore because I can’t use some of my medications if I need to drive and I have been so reactive that that might have been dangerous. But I made a huge wager on Saturday: I drove myself an hour away to New Hampshire to celebrate the Fourth of July with my friends and nieces. I stayed overnight and went swimming today, deaccessing and reaccessing my port. I drove myself home after being in cold water and direct sunlight for over an hour, stopping at Whole Foods and doing my grocery shopping on the way. I cleaned my apartment, did laundry, made lunch for tomorrow, ironed my work clothes, and watched Shark Week. I did all these things without any help.

The Fourth of July is Independence Day in the US. As I watched the fireworks, it felt like I was celebrating my own personal Day of Independence. I don’t know how long this will last.  But I got this one great week and this one Fourth of July.  And maybe I’ll get more.

The high water mark

I spent most of the latter half of May in bed. People woke me up take medication on schedule and I fed myself small meals periodically. I watched movies and TV and drifted in and out of sleep, pain killers and Benadryl making the world soft around the edges.

Every day, even as I felt myself healing, my strength and stamina waned. My legs felt weak when I stood up. I got winded walking around the block. Holding my head up felt difficult. All of the stamina I had built up before surgery was gone. All of my progress was undone.

I spend so much energy trying to get somewhere I’m never going to get – to this place of physical health where I can exercise and sleep at night and wake in the morning without bleary eyes and a pounding headache. I have been trying to reach this milestone since well before I knew I was sick.

I’m not even sure I know the closest I ever came. What is the highwater mark of this particular struggle? Was it the few weeks before my last birthday when I was sleeping at night and waking without an alarm? Or that really good day last September? The few weeks after my colostomy healed? I don’t know. I’m not sure there is a high water mark. Everything is relative.

Living with a sickness that causes regular setbacks – and requires treatments that sometimes do the same – is difficult. This halting start has become a sort of rhythm, the timing an inherent part of this experience. I’m never getting anywhere. I’m always getting it wrong. It feels like if I could do the right things in the right order that it would make a difference. `

But what if every time I started again, it didn’t mean that every time before was a failure? All those times before, all the moves in the wrong order, kept me alive and participating in the world. How wrong could they be? What if the high water mark of this struggle is just being alive?

Reversing the ostomy was the right move. I am noticeably less inflamed and my body is responding. I am having fewer reactions. I am eating without vomiting. The squishiness, the swelling weight is melting away so I can see the features beneath. I am still in pain, but I think I always will be.

I’m getting stronger. It’s slow, but it’s happening. I can walk for twenty minutes now, Astoria happily padding along beside me. I’m short of breath and sweaty when I’m done, but I can do it.

Maybe it’s time to stop blaming myself for all the times I had to start over. Maybe it’s time to see these setbacks as opportunities to understand my body and learn from it.

Maybe this is enough.

 

Winding in the light

I have a wound on my abdomen, a literal open wound where my stoma was. Every night I undress it, removing long thin strips of gauze before replacing them with clean packing, manipulating the tendrils with sterilized scissors. It is graphic, visceral. But I prefer to do it myself. I prefer this active stewardship of my body.

It is healing, closing up along the seams that have formed on my skin, one on each side. I am participating in the act of healing my body. Soon the line will be continuous, all the tissue underneath knitted together. Just a line that keeps a secret, like lips sewn shut. No one will ever look at this scar and know I had an ostomy until I tell them.

My GI tract is trying to figure out how to work with this new continuity. It hurts. It feels like everything holding my abdomen together on the left side is trying to give out. I am starting the very slow and arduous process of regaining strength and routine. It feels like a lot on some days. Today it feels like a lot.

But two years ago this was unfathomable. Even six months ago, I thought I knew pretty well the path my life would take it, and it was a short road, a straight line to pain and anaphylaxis and liquids and soft solids forever. I still see that road, but it is longer and it winds its way more into the light.

I don’t believe anymore that there is any fear that is so wide and so deep that you cannot meet it. I just don’t believe it.

Back together

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

I still live here

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

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

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

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

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

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

Not a sad story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Disney

Horizon

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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