Cataclysm

I have had a central line for four and a half years.  We placed a PICC line in early 2014 to facilitate vascular access in an emergency, to administer rescue meds at home during an anaphylactic event, and to allow me to use IV fluids at home to stabilize my blood pressure.

Shortly after I had my line placed, I was hospitalized for a five day long episode of protracted anaphylaxis. Because I had pretty much already tried every oral medication that could help manage my symptoms, trying IV medications was the obvious next step. I went home from the hospital with a prescription for IV Benadryl.

Speed matters a lot in management of mast cell disease. There is a tiny window of time during which immediate medication can stave off continued reaction or anaphylaxis. I learned how to dilute and push IV Benadryl during mast cell crisis.

Using IV meds was really nerve wracking at first, much more than I expected it to be. I’m an infectious diseases microbiologist by training and used to develop diagnostics for blood stream infections. I don’t think I can overstate how scared I was of getting sepsis. Every time I touched my line to flush or give meds, my hands shook and my heart pounded. But this was tempered by an obvious benefit: use of IV Benadryl as soon as a reaction started often prevented the need for epinephrine.

My health fluctuated over time. Eventually, I started using IV Benadryl as a baseline medication to manage daily reactions. It allowed me to exercise. It allowed me to eat. It allowed me to travel. It allowed me to work. IV Benadryl restored a much improved quality of life. I have used it ever since.

IV Benadryl is an old medication. It is off patent, cheap to produce, and made by multiple manufacturers licensed in the US. Overwhelmingly, it is used to manage anaphylaxis. Regular use as maintenance for patients was unheard of before the mast cell community began using it to manage reactions. Home use of IV Benadryl both for maintenance and for rescue – that is, to manage regular daily symptoms as well as to be lifesaving in the event of anaphylaxis – has become more popular in the mast cell community in recent years. I think I’m probably partly to blame for this – I have openly talked about how much it has helped me. I probably know a hundred mast cell patients who use it regularly.

In mid September, I got a call from my IV pharmacy. They were calling to tell me that vials of IV Benadryl were unable and they were going to dispense IV Benadryl in prefilled syringes. Fine. I didn’t care what package it was in. But I knew multiple organizations made this medication and I found it strange that vials from all of them would be unavailable at the same time. It was odd. But it was also true. Every manufacturer was reporting that it would be several weeks to months before the vials would be again be available.

A week later, my IV pharmacy called to let me know that the prefilled syringes were no longer available either. I found out on a Friday afternoon that come Tuesday, I would be out of medication. No one could get it. All distributors were out. I called over fifty pharmacies in Massachusetts trying to find some. I talked to the FDA. I talked to the manufacturers. I talked to hospitals nearby.

Despite being labeled a “critical backorder”, this phenomenon was something else entirely. It wasn’t “I can’t get enough of it.” It was “There is no IV Benadryl available anywhere in the US.” EMS is out. Hospitals are out. And every pharmacy everywhere is out or dangerously close. With only a few days warning, mast cell patients found themselves unable to get medication that literally kept them alive.

It is not overstating things to say that IV Benadryl is necessary to sustain life in a number of mast cell patients. I am one of them. Many people need it to maintain an airway. Others, like me, need it to recover blood pressure during anaphylactic shock. A lot of patients were only able to live outside of a hospital safely because they had access to this medication. The danger posed to these people is enormous. This is especially true because in an emergency, you can call 911 and have them take you to the hospital but they don’t even have the medication to treat you. This means that unless patients already have some, in a crisis, it is impossible to get more from literally anywhere. If you need this medication to survive, you are in real peril.

Compounding the issue is that IV Benadryl is the only potent H1 antihistamine available in IV form in the US. There are no alternatives for IV H1 antihistamines. It is IV Benadryl or IV nothing. It is also not used much outside of the US so getting it from abroad isn’t really an option.

Mast cell patients have been encouraged to use epinephrine as early as possible without IV Benadryl to potentially stave off a reaction. So we can all just use epipens anytime we react badly, right? Just kidding. Epipens are also on critical backorder. Okay, let’s use IV fluids to recover blood pressure during anaphylaxis and severe allergic symptoms. Haha, no. IV fluids are also on backorder. One of the safe narcotics for mast cell disease is no longer available. Certain benzodiazepines are no longer available. And we have no idea whether or not these medications will be available in the future.

The stress of this situation is paramount. I have patients getting trached to allow them to be hooked up to a ventilator. I have patients who can’t stand up without reacting or passing out. I have patients who are using epi multiple times a week. And I have patients who are scared to use their epipens so they gamble that they can control their reactions with something else. The single greatest risk factor for fatal anaphylaxis is delay in the administration of epinephrine. “Saving” epipens is dangerous.

Those of us who have won some stability through this medication are terrified of going back. I am terrified of going back. It’s already starting. After several months of debilitating symptoms and repeat anaphylaxis, I have been preparing to return to work in November. I love my job. I love my coworkers. I love my company. I can’t safely return to work until I have a guaranteed supply of IV Benadryl. And as of now, that could take months.

I am angry over this situation in a way that borders on holy fury. Mast cell disease is hard on its best day. It doesn’t need to be made even harder. Total loss of access to rescue meds is life threatening for many of us. In a country known for its premier healthcare, essential medications are completely unavailable. Mast cell patients were not even notified of an impending backorder to allow us to identify a source and stockpile. We were ignored entirely. This is the end result.

This is a dark time for our community. It is a time for fear and anxiety. It is a time of uncertainty. It won’t last forever. But that is cold comfort when you are terrified.

It is also a time to stand up and fight. It is a time to be visible. It is a time to be loud. It is a time to shame these organizations for letting this happen to us. Because if I have to suffer, I will damn well make them watch.

I know a lot of us are struggling. Be careful with yourself. Don’t take risks. Wait it out.

Take care of yourselves. Remember: it won’t always be like this. You don’t have to beat it. You just have to outlast it.

Mastsisters

I love all my masto kids. But there’s something special about this little girl. The week after her second birthday, her mother, a total stranger to me, called me to convince me to be part of Addie’s team in her very complicated, very high stakes, very frightening, very literal fight for her life. I agreed. Addie was my very first case.

When our paths converged four and a half years ago, Addie was living on the edge of disaster every single day. Incidentally, so was I. We got our first PICC lines the same month. I started chemo two weeks after her mom called me. We were both in and out of the hospital with protracted anaphylaxis and scopes and procedures. We both sustained significant organ damage that year. Things were not good. But I always believed that if we could just stay alive that one day we would get better. Maybe not healthy. Maybe not well. But better. Better was the dream.

Today, we walked around Salem on a perfect breezy June day. We breathed in the salty ocean air. We looked for Halloween figurines in the small shops at Pickering Wharf. We squeezed through secret passages in dusty four hundred year old houses. We struggled to read the lettering on the smooth white faces of centuries old tombstones. We talked about school and safe foods and hospitals and ports. We ate things that would have put us in the ground when we first met.

This is not an easy life. It is never going to be easy. But there is something about looking back years later that makes you see this journey as worthwhile. We can eat food now. We aren’t admitted constantly. We are not shocking left and right. We are not always on the brink of anaphylaxis.

We made it. We are still here. We are still living in the happy moments and getting through the hard ones.

We are mastsisters. We are survivors. We are alive.

Me and Addie, Los Angeles, May 2015

Me and Addie, Salem, June 2018

Sensory memory

Sensory memory is the shortest. It lasts less than a second, usually; the memory of things you hear, echoic memory, might last a little bit longer. The things we see, hear, touch, taste, and smell all provoke a response by our nervous system. These tiny events are filtered almost immediately. Noticing everything would overwhelm our brain, both physically and figuratively. We only acknowledge things that are useful to short term memory; everything else is discarded before we even know it was there.

How many things do we see and hear and feel that our brain decides aren’t important? What if we wanted to see and hear and feel those things? What if it robbed us of these memories? I worried about this years before I understood the neurobiology of forgetting. I think that’s partly why I write: I don’t want to regret forgetting something, even if it’s not important.

My father died last month. He was diagnosed in January with a disease that would kill him. Right away, I hunted down memories of him. Hard copy photographs and pictures on our phones. Home videos from when we were growing up. Voicemails with his voice on them. Handwritten notes. Birthday cards. I started making videos of him so I could hear his voice and remember the way he moved. I journaled exhaustively, writing about my days with him in exquisite detail. I knew how easily those little pieces could be discarded and I didn’t want to lose any of it. It was too important.

All of this has had the weird side effect that I now cannot stop triggering sense memories. They just happen now. I can’t control them. I can’t choose not to pay attention. They are all so complete and so vivid. Splinters of moments that got caught in the void between the past and the present. Here but not here. Then but not then. Visible but untouchable.

In particular, I am overcome with memories from my childhood of us camping. From the ages of 4-14, my family camped every weekend from mid April to early October and for several weeks in the summer. I remember the long car rides to New Hampshire on Friday nights. Wearing my father’s blue jacket, standing in front of him around the campfire on a cool summer night. The smell of the damp earth every April on opening weekend. The sting of hitting the water after my father threw me into the air while we swam in the river. Sunny days at the end of summer when my father, my mother, my sister and I were the only people on the tiny beach. Making sand castles with moats around them. Day trips from the campground to Canobie Lake and Salisbury Beach and York Animal Kingdom.

And then the hard stuff, the memories I wish I never had to make: how soft his hair was under my hand when I tried to soothe him, the way his skin smelled at the end, how his chest rose and fell as he breathed. How it felt to wake up in a world where my father was not alive. How it was physically painful. How every day is still harder than the day before it. How it felt like I was suffocating when he died, like I’m dying. How it still feels like that.

How living in these memories is excruciating. But how losing them would be worse.

Find a light

I have been writing stories for a long time. I have been keeping journals since I was six and they are full of them. I always wrote about my actual day to day life in journals but never enjoyed autobiographical writing and didn’t think I was good at it. That’s entertaining now to think about, considering that I have spent the last four years digging out the hardest parts of me to share with the internet. But before I was Lisa from MastAttack, I was Lisa Klimas who wrote fantasy stories full of witches and magic that was intended to be shared with no one.

I don’t write fantasy stories anymore. (Except maybe the ones in my head where I fantasize that I’m not living in this body anymore.) I stopped when I started writing MastAttack; I’m not sure why, exactly. But even though I don’t write in this genre anymore, I am still very prone to seeing my life through the lens of fantasy; particularly, I relate aspects of my life to symbolic elements I used to use in stories. This is pretty obvious for anyone who has been reading for a while; I talk about the sky and stars and the vast endless space beyond this world in a lot of posts. Somehow, despite writing very frankly about my life, in my mind this is still a story about someone else, a fantasy story where anything could be real, and where the protagonist could do anything with the right magic.

The past six weeks have been difficult for me in ways that I could never have imagined. I was hospitalized for CDiff in Florida, and then again for CDiff in Boston shortly after I got home. On the last day of my second admission for CDiff, I found out that someone I love very much is very, very sick. The kind of sick that makes me numb to think about. It seemed like things started to level out with my health. I was pretty beat up but the infection seemed to finally be under control, and I was more available to help out with family things. Things seemed more manageable. Until they weren’t.

Last week, I noticed a very minor skin irritation around my port access site. Very minor. The kind I have had many times before just by virtue of having mast cell disease and having fair skin that marks easily. But I’m very meticulous about my port so I called my home IV nurse to come look at it. She came and agreed that it was probably a mast cell reaction or a very minor skin infection. It wasn’t hot, swollen, or painful. The redness was faint and covered a very small area around the needle site. I had no fever, chills, or other signs of infection. She was so confident that it was just a skin irritation that we accessed the port. I called my PCP for some prophylactic cephalexin in case it was a skin infection and breathed a sigh of relief.

I woke up in the middle of the following night with a fever and a much redder and angrier looking port. I took mast cell premeds and went to the hospital immediately. And even the ER nurses and doctors didn’t think it was a serious infection. It still wasn’t swollen, painful, or hot. (For people wondering why I’m harping on this, the four cardinal signs of infection are tumor (swelling), rubor (redness), calor (heat), and dolor (pain).) But they weren’t taking any chances and we spent an hour finding a peripheral vein to use while we sorted out my port. My white count was elevated but it is always is. They told me that they expected I would be admitted, get a few doses of IV antibiotics through the port, and go home in a day or two with the port.

Things didn’t exactly happen like that. Over the course of the day, I got sicker. I started feeling sicker, and I started having more mast cell activation. My white count went from normal for me level to through the roof in a few hours. I was rushed into an interventional radiology suite where everyone still thought that the port was not really infected. They told me after the first incision that things looked good. Then they took out the port and all hell broke loose.

There was an infection underneath my port, beneath the port and chest wall. One that had been brewing for a while. Suddenly everyone was talking in loud voices and debriding the poorly numbed cavity. I should have asked for anesthesia before the procedure but I had never had an IR procedure that required more than fentanyl and midazolam so it didn’t occur to me until they were literally carving pieces of tissue out of my chest. That is not a mistake I will make again.

I was hospitalized for several more days, including a total of three days without a central line. I blew in the neighborhood of ten peripheral lines and it would have been more if I hadn’t had good nurses who babied them to try and make them last. I get IV benadryl six times a day most of the time and that’s part of why I have a central line. IV Benadryl is really damaging to blood vessels and soft tissue, and my blood vessels are already in pretty rough shape. Getting IV Benadryl through a peripheral vein is miserable. It feels like knives shooting up your arm. I used all my tricks and wrapped my arm up in a hot, wet towel for several minutes before every dose, and we diluted it and pushed it slowly and flushed it slowly, and it was still excruciating every single time.

They put in a PICC line last Monday so I could go home and keep up with my home IV meds and fluids. I came home on IV antibiotics every eight hours for the line infection and oral antibiotics every six hours to hopefully prevent me from getting CDiff again from the other antibiotics.

The catheter tip grew out Staph aureus, meaning I had a staph infection a couple of inches from my heart. I got very lucky that I was treated fast enough that it never become a fulminant bloodstream infection but it came pretty close. Another few hours and this story might have had a very different ending. As it is, I suffered a lot for several days, and left the hospital with a hole in my chest so deep that it is nearly to the chest wall, deep enough that I cannot pack it myself because I cannot see the bottom.

Part of the shock of this situation is that I have had a central line for four years and have never had an infection. I am a maniac about my line and sterilizing it and being meticulous not to contaminate anything. I avoid hospitalization like the plague so that I’m the only one touching my line. When my last port was removed, after three years and three weeks, I was told that it was the longest continually accessed port in a BWH patient never to be infected. In total, I had three central lines (a PICC line and two ports) for three years and eleven months before we found any evidence of infection.

I couldn’t figure out how it got infected, and especially how the infection got behind the port. In retrospect, I think might have been contaminated when it was implanted. I don’t know how else I would have seeded a bacterial infection between the port and chest wall, but not over the port at all. I’ve felt sicker and more activated the last few months and it’s possible I had an infection growing all that time. It’s also possible that this isn’t the case but my instincts feel like this is the explanation. Either way, I’m never going to know for sure.

I came home earlier this week and was very relieved to see my family, my dogs, and my bed. I wasn’t feeling super but I just had a line infection so I wasn’t really expecting to.

Yesterday, I started having a GI bleed bad enough that I called an ambulance. While on the phone with 911, I started having anaphylaxis because that’s just how we do now. I laid down and used an epipen while feeling pretty dejected that I was now going to be admitted to the hospital for the fourth time in six weeks. I have been admitted for a total of 17 days this year. We are only 49 days into 2018.

Last night, I sat in my isolation room and watched it snow from the tenth floor. It was the middle of the night and the world was silent as snow covered every darkness and imperfection below. Not the terrible storm it was rumored to be. Just snow. Snow that is already melting under a clear blue sky and a brilliant and victorious sun. Light always wins.

I know that I am not really the protagonist of a fantasy story and that I’m not really going to slay the dragon that is my poor health. My health is bad. I have largely made peace with that. I want it to be better but I don’t expect it to be. But I also know that for every evil there is a pure good, and that bad things happen to me but the worst things don’t, and that I won’t always feel this way.

I don’t know how I will get through this or how long it will take or what I will lose along the way. I just know that the snow has fled under a brilliant sun and that somewhere, somehow, I will find a light.

Cut out the broken pieces

I was hospitalized for almost a third of January. In the first hours of 2018, I was put into an ambulance and brought to a hospital where I know no one a thousand miles from home. I arrived with a high fever, continuous, forceful vomiting, and colitis symptoms from hell. A couple of days later, I tested positive for CDiff, a severe colon infection that is dangerous and difficult to treat.

Metronidazole calmed the CDiff enough for me to be discharged. I stayed in Florida several more days, unable to get home because of the storm. I was home only a few days before I was once again brought to a hospital by ambulance with severe colitis. The pain was literally blinding. My vision flashed white at the worst points, lightning coming in waves.

I live with serious chronic pain and almost certainly will for the rest of my life. I am not a stranger to pain. This is the worst pain I have ever experienced. I am not a screamer with pain. I was screaming.

The CDiff was no longer being controlled by metronidazole. I was admitted and we started oral vancomycin four times a day.

I have been sick a long time. I think this was the sickest I have ever been.

I also had some strong emotions to contend with, namely that I was angry. This isn’t the first time I’ve had a major problem with my colon. It has been a consistent problem for years and is usually the reason I end up in the hospital. I have had multiple colon surgeries and so many scopes and biopsies that I sincerely can’t remember how many I have had. Lower GI bleeding is part of my baseline. I have to undertake extraordinary interventions to get stool out of my colon. My colon does not work. It performs none of its intended functions.

When I had my last colon surgery, I begged my doctors to take out the whole thing. I begged them because I knew it would never stop being a problem and would never stop sending me to the hospital periodically. They wouldn’t do it. They took some of my colon but they didn’t take all of it and look where we are now. We’re here, in a place that would be impossible to get to but for the fact that my damaged, bleeding, useless colon is still inside my body. A place we could not have gotten to if they had just cut out this broken piece of me. But they didn’t.

The oral vancomycin worked well for me. I medicated heavily to suppress mast cell reactions to the med, which is a known degranulator. After a few days, my symptoms improved significantly, but my pain was still bad. It took another few days to be able to eat anything and to manage my pain without IV meds.

By the end of my hospital stay, I was very ready to go home. I was cautiously optimistic that the oral vancomycin would work well for me and that the worst was behind me. I packed up all my stuff and filled all my prescriptions and waited in my isolation room for my uncle to arrive to pick me up.

A couple of hours before my uncle arrived, I got a phone call. I was walking around the floor and was in a hallway quiet enough that I could hear a conversation on the phone. I had this weird moment of foreboding when I answered the phone. I know it sounds cliché and theatrical but I really did. I sat down in a chair near the elevator bay and answered the phone and my entire life exploded.

As I sat there talking, something inside of me broke. The pain was immediate and crushing. I couldn’t breathe. I couldn’t stand up. I couldn’t think. My entire life changed and it will never change back. The life I had was gone in a moment, ripped away by a dark, whipping current. I blame this broken piece because it started there. Another broken piece that can never be fixed, that will poison me every day of my life. Another broken piece that can never be removed.

There are some realities too horrible to imagine. When you try, your mind just shows the future the way your life is now. Your mind cannot envision a life without certain people because it is so horrible that surely such a life cannot exist.

I have so many things to say but my soul is too tired and worn to speak them. The effort required is too great. Instead I swallow them down. They collect behind my stomach, cleaving to my spine, growing larger and larger with each truth I cannot get out. A broken piece of my own making that can never be cut out.

Coast

When I was growing up, my family went camping every weekend from April to October and most of the summer. We had a trailer on a seasonal site in southern New Hampshire. There were tons of kids around my age and our parents were all friends so they often planned group outings for all of us. We went to a few different places but my favorite was Salisbury Beach.

Salisbury Beach in the 90s was the quintessential New England seaside town. There were several arcades across the street from the beach with lots of games to play. There were places to get fried dough. Salisbury Beach also boasted a relic pulled out of times long past: an oceanside amusement park with a wooden roller coaster called Pirate’s Park. Together with an annual trip to the newer Canobie Lake Park, it instilled in me an appreciation for roller coasters. You can’t worry about work or responsibilities when you are screaming and barreling down a steep incline. There are a handful of seconds when you are totally and completely free.

For this reason, I have always found amusement parks to be worthwhile distractions. In the spring of 2016, after a particularly stressful few weeks, I spontaneously booked a trip to Disney World for just me. I wanted to go swimming during the day and go to parks at night and just be by myself and not have to say the words “mast cell” for a week. I hid behind a huge black floppy hat and sunglasses for a few days. And of course, I stopped at all my favorite roller coasters.

Nicole and I have made plans to go to Universal Studios several times. Every time, I have been too sick to go. We planned to go this past Tuesday but I ended up in the hospital with CDiff. We resigned ourselves to the fact that this adventure would have to wait yet again but then the storm hit and my flight was cancelled. I couldn’t get a flight back until tomorrow. So when I seemed to be okay yesterday, we decided that we were going to Universal today. The Mast Cell Amusement Park Team was back in business.

It was cooler today than normal for Florida at this time of year, in the low 60s with a nice breeze. It felt like Boston in the fall and the weather could not have been more perfect for us. We got Express passes to get us to the front of all the lines and we went on every single roller coaster they had. I needed to take huge doses of prednisone today anyway to prepare for my flight tomorrow and I banked on that prednisone managing my symptoms enough to go on rides. I banked right. It was such a great day.

I can hold my disease back with medical intervention enough to do something like this but it is very temporary and never lasts more than four or five hours. As anticipated, I crashed around nightfall. I was already pretty sore when the day started and I am now in significant pain. Tomorrow will be rough. It will take days beyond that to get back to baseline. I don’t care. I made this choice understanding that this is part of the bargain. CDiff and the Bomb Cyclone blew epic craters in my plans. But we were able to pull this off, and that is worth celebrating.

Not every choice you make about your disease will be the right one. I struggle with this. With every wrong choice comes a rising sense of culpability. As if you are somehow complicit in your own disease, that you have caused this and deserve to suffer. As if your decision to eat a cheeseburger or go to an amusement park could possibly be responsible for all of the things inflicted upon you by mast cell disease. You are not that powerful. You do not have that much control. Mast cell disease is not something that you made happen. It is something that happened to you.

There are days when I am sure I have nothing left, that I’m hollow from the absence of all the things I have lost. But there are other days. On some of those days, I have roller coasters.

An open letter to healthcare providers about pain medication

Dear Health Care Providers,

My name is Lisa Klimas. I am a 34 year old research scientist and a subject matter expert in mast cell diseases. I have a rare blood disorder called systemic mastocytosis.

The hallmark of mast cell disease is severe allergic reactions or anaphylaxis to things we’re not actually allergic to. Constant mast cell activation can affect every system in the body. Organ damage from inflammation is not unusual. I myself have had significant organ damage, most specifically in my GI tract. Additionally, mast cell reactions and anaphylaxis can occur at any time and without warning. Living with this disease is unpredictable in the extreme.

Mast cell activation under a variety of circumstances has been linked to pain. I have pain. I have bone pain in the legs and pelvis. I have costochondroitis that keeps me awake. I have significant GI pain. My stomach is paralyzed. My colon is heavily damaged and has been operated on twice. I had a colostomy for over two years. My colon has herniated multiple times.

I deal every day with the consequences of this disease. I deal every day with the pain it causes me and will always cause me. Since pain is part of my life, so is pain medication. Since pain medication is part of my life, so is abuse and judgment by providers I don’t know. It is so prevalent and requires so much energy that mistreatment by health care professionals is almost a symptom of this disease.

Every good story has an antagonist. You need someone to root for and someone to despise in order to drive the narrative. This also plays out in real life. Shared disdain provides a reassuring connection to others who share your views. There is always a good guy and a bad guy. And in the story that the healthcare establishment tells itself, patients who need pain meds are the antagonists. We are the bad guys.

Healthcare providers often feel that it is not just allowed, but expected, that patients in need of pain medication are treated as if they were seeking these medications for recreational use. We know those people exist. But we are not those people. We are people who are damaged and hurting. Pain is crushing. It takes so much from you. It takes things from you that you can never get back. For many of us, the only way to control the pain is with narcotics.

We have legitimate medical needs for pain management medications. We do not get high from them. We do not enjoy them. For many of us, pain medication is the difference between functioning and not. We are just trying to live our lives to the best of our ability and pain medication makes that possible.

Please recognize this situation for what it is. Please stop conflating pain patients with drug addicts. We are not scamming you. We are coming to you for help. Please treat us the way you would treat anyone else who came to you for help.

This story you are telling yourself is wrong. We are not your enemies. We are not antagonists. We are people. Help us.

Flood

Floods are often used metaphorically. In literature, flooding is a tool that indicates a need for a new start, a beautiful and ethereal destroyer. It’s something everyone can easily envision. We can all relate to the need to breathe and the fear of dark and rising water.

My city is underwater. This flood is not metaphorical; it is real and devastating and historic. There is currently no way to get in or out of my town. Historically high tides are running through the streets. Just a few blocks from my home, people are being rescued from several feet of water by front end loaders. A fire truck had to be towed after getting stuck. Just Revelations level insanity. The craziest shit you’ve ever seen. Except I’m not there to see it.

People who have been following MastAttack for a while will know that I spend a fair amount of time in Florida. Three of my best friends, all of whom have mast cell disease, live in different cities dotting up the gulf coast of the state. Nicole has a horse farm in the middle of nowhere with no wifi and shitty reception. It’s the perfect place to lay low and duck out of life for a bit. I flew down the Wednesday before New Year’s with a return trip booked for yesterday. But I didn’t make that flight and I don’t yet know what flight I will make because I have been dealing with my own Revelations level insanity down here.

Last Saturday, Nicole and I drove from Ocala to Sarasota to visit my dear Kristina and her fantastic parents. On the way, we stopped and got breakfast. I got something I eat regularly without trouble. Thirty minutes after I ate, I knew something was wrong. The situation quickly evolved from GI cramping to excruciating epigastric pain. I took meds and applied Benadryl liberally.

We visited with Kristina and her family all afternoon which was great and not Revelations level insanity. For people who don’t know, Kristina is a mast cell patient who had a stroke in her brainstem in October 2015. The stroke caused Locked In Syndrome, a condition in which the patient is completely aware and cognitively normal but is unable to move or speak.

Kristina’s family was told that she would never recover any function. The good news is that that was a bunch of garbage because she’s regaining function and body control every day. It is an incredibly slow process but she is doing it. She now gets all her nutrition by mouth instead of via G tube. She is stable without IV meds. She is building core strength and working on standing. She communicates by a special computer that will read aloud what she types. She is able to leave the house more now and attends church regularly.

My GI tract was pretty sore when we left Kristina’s house and I realized shortly after that I had a GI bleed. This is not unusual or impressive for me; I bleed more often than I don’t at this point. I figured taking it easy and eating minimal solids for a few days would resolve it. It didn’t.

I woke up on New Year’s Eve feeling very sore but otherwise okay. I went for a walk around the farm. I did some yoga. Nicole and I went to her parents’ place for dinner. By the time dinner rolled around, I was feeling pretty nasty. I went back to the farm to medicate heavily and go to bed.

I had been puking and having diarrhea for a couple of hours before I started to think something was very wrong. I was sure that this was not a reaction and figured I had picked up a stomach bug somewhere. I was shivering and achy and unable to get warm. I called Nicole in the middle of the night and she came over with a thermometer and BP cuff. I had a fever of 102.5.

When you have a central line, every fever is scary. I don’t get them a lot and it really scares the shit out of me when I do. A line infection can be fatal. Even when it’s not, it can takes months to recover from one. I knew I needed to go to a hospital 1000 miles from home where no one knew me. I was scared of a line infection. But I was more scared of being subjected to ineffective care from providers who didn’t understand my disease and wouldn’t listen to me.

I remember getting into the ambulance. I do not remember arriving to the ER. I was super tachy with high blood pressure and a screaming high fever. We all immediately assumed this was sepsis. They didn’t fight me about my mast cell needs which is lucky because I doubt I would have been able to do anything about it anyway. I was hallucinating. The GI symptoms continued when a vengeance. They got my records from Boston and admitted me later that day.

The following day, I tested positive for CDiff, a severe GI infection that is almost always caused by recent hospitalization or recent antibiotic use, neither of which applied to me. I recovered so quickly it was almost shocking. I was discharged last night.

I had to reschedule my flight home because of the hospital admission. I was not healthy enough to travel. Boston was forecast to suffer an unreal storm the following day. In New England, the storm doesn’t always deliver the fury promised by meteorologists. This storm delivered. My flight for tomorrow was cancelled. It looks like I’ll get back to Boston Monday or Tuesday.

I am very paranoid about getting stuck somewhere without adequate medication or supplies. I am so paranoid about it that I have an excel spreadsheet that tells me how much to bring of everything based upon 150% of expected use. Fortunately, this means that I am pretty well stocked and can afford to wait out a few extra days. There are a few things I didn’t pack enough of. After a lot of anxiety and fretting, I have managed to cobble some of it together with the help of local patients. We will to figure out the rest of it tomorrow.

I have struggled with my fear about my disease since the day I was diagnosed. It’s not rational but it’s real. I have literal nightmares about forgetting my medication or supplies when I travel. I have literal nightmares about getting sick far from home and ending up in a strange hospital that doesn’t believe what I tell them.

It used to seem to me that it should get easier to cope with this fear but it never has, at least not for me. I keep waiting and waiting to happen across the moment when I am not afraid. When I can take a full breath. When I don’t feel like I am being pushed into the ground. When something unexpected does not immediately signal emergency. But I never do because there is no moment. That moment does not exist.

I hope my city get its head above water before I get home. I hope I get my own head above water, too.

The push down

I am a very busy person. I sometimes don’t realize how busy I am. I work full time. I study. I write and research for MastAttack. I contribute to care plans and work with patients. I am an involved auntie. I spend a lot of time with my family. And of course, I am sick, and being sick accounts for the majority of my life.

I like making plans. I have always liked making lists and checking things off. These days, I have so much to do that I have to be really organized to get anything done. Everything goes into my planner. I read it every day as soon as I wake up to ground myself and focus. Every task has an assigned completion date and time allotment. If I have ever agreed to answer a question for you at a later time, or to research something, or to do something for you, you are in that planner.

My planner keeps track of everything I do and, often, everything I plan to do, but which I do not complete by the anticipated time. As time goes on, I accumulate more and more outstanding tasks. For the most part, they get completed eventually, but it is sometimes several days or weeks later than intended. Like everything else in my life, my ability to stay on task is fully dependent upon my health. Because my health is unpredictable, everything else in my life becomes unpredictable, too.

For the last several months, I have been trying to buy a home. I have been trying to find a two family home so that my parents could live in one while I live in the other. Initially, it looked like the easiest option would be to level my parents’ house and build a two family on that property. Then we looked at existing two family homes. Then we looked into modifying a single family home to make it two separate apartments. The last eight months has been consumed by this.

Yesterday, we looked at a house that largely met all of our needs. We discussed making an offer and ultimately decided against it. For the most part, the experience of looking for a place to buy has not been particularly upsetting me, but yesterday, it upset me. I’m not sure why. I suddenly felt overcome by the weight of all the emotional things I have tied up in this house hunt.

For a disabled woman, I am in a pretty plum position right now. I work full time for an employer that accommodates and respects me. I can afford to pay my living and medical expenses and have some left over to travel and do fun things. I have excellent insurance. I have tried hard to set myself up as much as I possibly can for the eventuality of becoming unable to work and dependent upon disability benefits. With the exception of traveling, I live pretty frugally. I live in a very small rented apartment. I don’t eat much. I don’t really shop unless I need something specific. Aside from having two dogs who both need healthcare and medication, my health is my only major expense. This has afforded me an enviable financial position for someone as sick as I am.

I am recently coming to grips with the fact that while I am in a good position now, it could all be gone in an instinct. Any instant. Maybe this one right now. Maybe one tomorrow. I could become unable to work immediately. And while I have been able to save some money, it is impossible for me to put aside enough money fast enough for me to not have to worry about it. There’s just not enough time. No matter what I do or how well I plan, my financial situation will inevitably become unstable. This disease has robbed me of the ability to plan for my future.

My fear of instability is largely what has driven my search for a new home this year. I have lived in my current apartment for years. I don’t have any reason to think I’ll need to leave soon. There are things I don’t like about the apartment but it is cheap and meets my needs. But I don’t own this place and that means that the stability of my housing situation is fully dependent upon other people. I don’t have family in a position to take me in. I can’t live in my parents’ house. That means that if I suddenly had to move and couldn’t work, I have no idea where I would even go.

I have this life now with a safe, clean place to live near my support system, good healthcare, and a stable job that allows me to support myself well. But this could all be gone in an instant. I could do everything right, make every decision right, and still end up with nothing. That is almost certainly what will happen.

There are moments when my fear consumes everything. It is my omnipresent companion, the harbinger of a coming plague. It threatens to devour every good thing in my life, to just eat and eat and eat until there’s nothing left.

So what do you do when this life you love will be gone soon? You enjoy it. You use all your strength and you push down this fear and you enjoy it.

I will never be able to save enough money to keep me financially stable and independent. If I spent nothing on anything except my absolute life essentials, it wouldn’t matter. I try to remember this on the days when I book airfare or buy myself a new dress. I do not have to feel guilty that I am not saving every single cent I can when it wouldn’t matter anyway. It is okay to relish being alive. It is okay to have as much fun as I can. It is okay to spend money to be comfortable and happy.

Last night, as I was making notes about projects I plan to complete in 2018, I was inexplicably overcome with this sense of calm. As I looked over my upcoming trips noted in my planner calendar, for the first time in a long time, I felt perfectly at peace. It is okay to spend money to go to Utah and California and Australia. It is okay to use this body for everything it is good for until the time when it is no longer good for anything.

I’m heading to Florida for a week after Christmas to visit my Masto Little Sister, Nicole, and my dear Kristina Brightbill (who is making AMAZING gains). I’m going to enjoy every minute of it.

Colorado heartbeat

I am alive. I haven’t been feeling well. The adrenal crisis really kicked my ass and, if I’m honest, scared the shit out of me. It has taken me longer to recover than I anticipated and have had to focus my meager available energy on work. I didn’t realize how long it had been since I posted. Sorry if I scared anyone.

In the midst of these busy and exhausting last few weeks, I decided to run away from my life for a long weekend in Colorado. Colorado is my happy place. It is so beautiful that words don’t seem worthy to describe it. It is quiet and clean. It represents every amazing thing the earth is capable of. I have visited twelve times and I am always just as awed as I was the first time.

Since 2007, a series of people in my life who don’t know each other have moved to Colorado. It started when my best friend at the time moved to Broomfield from New Hampshire. I visited her several times. Then my uncle and his wife moved to Denver and then Golden. In 2014, one of my best friends, Priscilla, discovered that her masto daughter, who had such frequent severe reactions that she literally could not go outside during the day, didn’t have reactions in Colorado. Pris went back to Texas, packed up her family’s life, and moved to Summit County. It has been three years and her daughter no longer has severe reactions.

Priscilla had not spent much time in Colorado before moving there so there are still a lot of places that I have been in Colorado that she hasn’t. Last time I visited, I took her to Garden of the Gods in Colorado Springs. This time, we went to the Stanley Hotel in Estes Park, high in the mountains above Boulder. The Stanley is beautiful and interesting in its own right but it is most famous because the Overlook Hotel in the Shining is based upon the Stanley Hotel.

I am a huge horror movie fan and like the connection to the Shining. But that’s not the reason I go to Estes Park again and again. I go because Estes Park is the edge of my personal universe. I feel very much that if I don’t watch my step there that I could just fall into oblivion. I don’t know what it is about Estes Park that affects me so much. I don’t know if it’s because it is nestled in tightly among the peaks of formidable mountains or the remoteness or the quiet. Something about standing on the porch of the Stanley Hotel and looking down at the sparse twinkling lights below makes me feel tiny against the awesomeness of the universe. The whistling of emptiness is palpable as it runs down these peaks and into the valleys below. It is both lonely and heartbreakingly beautiful at once, both somewhere I enjoying being and somewhere I fear being abandoned.

The last several weeks have been difficult for me. Fall is always hard and the adrenal crisis really exacerbated things. I have almost no energy and am so tired that it takes a huge amount of effort to make my brain work. I find myself needing more sleep and I have always needed a lot. I am having a lot of pain and am so sore that I haven’t done yoga in a couple of weeks. I am limiting my activity and keeping my stress level down. Fall and early winter are always hard for me and I know I will feel better in January. I’m biding my time and listening to my body to give it what it needs in the meantime.

If I’m honest, I was not in great shape for travelling when I went to Colorado. Traveling has been mentally taxing for a while because getting on a plane with luggage full of IV fluids and meds and syringes is not easy. This is different. I am not recovering well from the physical strain on top of feeling generally poorly when I left. Travel is hard on my body and I can’t deny that as time it goes, it is getting harder. Each trip takes longer to recover from. I spend most of my time in bed when I arrive.

I had to stop traveling for years because of my health. Every trip I take now feels like a gift. It is frightening to imagine that the physical strain of travel may eventually become insurmountable. I won’t lose travel. I can’t lose travel.

I don’t know long I will be able to travel. Hopefully I have years left. But just now it feels like my body might not allow that. It feels like I’m walking along the edge and if I fall, I will never get myself back.