Extraordinary

I forget sometimes that this life is extraordinary. Being sick just becomes incorporated into your life. It is impossible to survive if you are upset about it every day. It just becomes part of your routine and you learn to live with it.

I had a new IV line placed last week. My port has been accessed continuously in the same spot for three years. My skin is indurated and paper thin over the access site. I accidentally tore the needle out last month and that further irritated the skin. Since I was likely weeks away from being able to literally see the port through the hole in my chest, we opted to place a temporary IV line for me to use so I could deaccess the port to heal the skin. They put in a midline last week and deaccessed my port.

I had a PICC line for a while before I had my port. The PA who placed it was pretty terrified of my mast cells. She had been warned by the infusion nurses at the hospital. The placement itself was uneventful but I will never forget having to reassure her. It was the first time I saw a provider scared of my disease. The following day, a home IV nurse came to change the dressing and check the site. She was also scared. She asked me to hold my epipens while she changed it in case of anaphylaxis. I reassured her, too.

While I am grateful to have IV access because it keeps me out of the hospital, I had forgotten what a royal pain the ass it is to have a line in your arm. The port is easier is so many ways. I can access it and deaccess it at will. I can change the dressing myself. I can get it wet. I don’t have to deal with my pump constantly squawking that the line is occluded because I bent my arm. Blood doesn’t back up in the port line. I don’t have to constantly lock the line with heparin. I forgot the way IV Benadryl burns when it’s pushed into a smaller blood vessel. The midline is temporary but obnoxious after years of having a port.

Having the midline has brought back a lot of memories for me from around the time I got the PICC placed. One of the strategies social workers recommend for adapting to a medical device or deformity or disease is to give it a name. I named my PICC because I had to convince myself that I could learn to live with it. I named my ostomy, too. I don’t bother naming things anymore. Because it has become routine.

Sunday night, I ended up in the ER after sudden onset severe GI pain. This pain is high in the tract and much more severe than what I have experienced before, both in intensity and in duration. I went to the hospital because the pain was so bad that I honestly thought I had ruptured something. It was the kind of pain that makes you think you are dying. I was literally screaming in pain.

I spent the next day in the hospital where my screaming pain was interrupted only by intense vomiting from the pain meds. We have no idea what is causing the pain. I am not convinced that it is mast cell related. I came home last night because the hospital couldn’t do anything for me that I couldn’t do at home. The nausea and pain were still there. So I left with no answers and a lot of pain.

One of my nurses yesterday was really horrified when I told him all the things I do on a daily basis to manage my disease. He in particular was horrified that I needed so much medication and was still left with debilitating symptoms. It is only in seeing this awe reflected in the eyes of people who see so much suffering that I remember how sick I am.

Today was the longest day of the year. In many pagan traditions, the summer solstice is the day when the land of the living and the land of the dead overlap. It is a day for seeing ghosts of those who have gone before us and specters of who we used to be. A day when the past whispers to you as you walk past.

I have spent all day reading through my journals from when I had my PICC line placed. I have thought about all the ways my life has changed. In many ways it has gotten better. But it definitely changed me. There is a before and after in my identity as a chronically ill person. That timeline splits along the line extending from that date.

What’s funny is that while so many things have gotten worse in that time, a lot of things have gotten better. I am much happier. I am much less scared. I am much more independent. I am much more in control of my disease and my life.

I no longer have to convince myself everyday that I can make it through the day with a central line that everyone can see. Because it is just part of my life and it’s no longer extraordinary.

The perfect medicine

I do not have a metaphorical list of things to do in life. I have a literal, physical list. I started it when I was 15 years old. I remember the noise the pen made on the notebook paper. (It’s hard to remember that I was once able to hear such noises). I remember carefully tearing the pages along the perforated edges of my spiral notebook. I folded it up and tucked it inside my journal.

In its first iteration, the list had over 100 things on it. Some of them were emotional (“fall in love with someone who loves me back”), some academic (“get a doctorate”), some simple (“paint my bedroom purple”), some about specific skills (“learn how to shoot a bow and arrow”), and others about experiences (“see the pyramids at Giza”, “swim in all four oceans”). One of them was to go to a Mayan temple. It was specifically written as “Go to Chichen Itza or a Mayan temple site.”

In the years that have followed, I have done many of the things on my list. I also periodically add to it. There are some things I will never do because they were linked to a specific timepoint or situation I never found myself in. I don’t mind. The list is a map, not an itinerary. It is the compass pointing to the true north of my life. It doesn’t mind if I sail around the bottom of the world to get there.

I have been in Mexico since last Sunday. It has been a very challenging week. There were major problems with my reservations and transportation and the staff have been frustratingly rude about correcting their mistakes. I have had some misadventures with my port and that was scary. (Fortunately, I have been on antibiotics for several days now and the port does not seem to be infected.) It was not exactly the relaxing week I was hoping for but I don’t think I’ve had a relaxing week in years so at least it wasn’t unfamiliar.

Yesterday, I got to watch a very dear friend get married on a beautiful beach covered by a warm, sweet wind as the sun went down. I got to watch my sister officiate the wedding and we were all excited to think that the next wedding we all attend will be my sister’s wedding next April. And today, after almost 20 years, I went to Coba, a large Mayan temple complex an hour from the resort I am staying at.

I was so excited to be able to do this. I was also scared. My life is an exercise in adjusting expectations. I have been let down so many times by this failing vessel my soul occupies. I would be crushed if I travelled all this way and couldn’t get to Coba.

My heart has been broken so many times by this body and the life it has imposed upon me. So many times I have felt like tiny pieces of me have been chiseled away along the lines of all these tiny spiderwebbing fractures. And most days I can cope with that and most days I like my life. But this was too important to me and I felt so vulnerable and so exposed. I was really scared that I would come so close and somehow miss this opportunity.

The weather was not cooperative. It rained a spectacular amount today. It took much longer than expected to get there because we had to drive slowly. It was the kind of rain that laughs at umbrellas and boots and ponchos. We were all completely soaked in a matter of seconds. But we were there. For an hour and a half, my family and I sloshed through mud puddles and negotiated the additional slipperiness of steps worn smooth and uneven long ago. My sister and her fiance got bicycles to ride to the biggest temple. My mom and I took a rickshaw to meet them there.

And then suddenly, emerging through the dense lush green of the jungle, there it was. We turned a corner and despite the special futility that is seeing things through wet glasses, I could see it. The largest pyramid, the one I had seen in so many books. The one I saw in an encyclopedia in seventh grade and never forget.

Cardio exercise is hairy for me under the absolute best circumstances and I avoid it as fiercely as I avoid undercooked egg whites. But I had made it so far and couldn’t leave without trying. I pushed down my fear and started climbing. It was wet and slick and hot. I kept my eyes on the steps and climbed, one hand on the rope strung down from the top, the other on the steps. If I turned around, if I looked at how high I was, if I thought about how easy it would be to fall, I would never have made it. I kept my head down and kept my eyes on the step immediately in before me. I moved forward and I didn’t look back. And almost 20 years after writing the entry in my list of things to do, I climbed to the very top of a Mayan pyramid.

One of my sister’s best friends is Buddhist. She was also in Mexico this week for the wedding. Last night, we chatted about living a good life with chronic illness. (She is a diabetic.) She told me that one of the leaders of her sect of Buddhism believes that for everything that can ail the body, there is a perfect medicine to cure it. Nothing can be done that cannot be undone with something somewhere in this world. Maybe it takes forever to find it. Maybe we never find it. But it is there nonetheless, waiting for us.

Maybe all those crystal slivers of my heart that I have lost were not really lost but scattered. Maybe this is the perfect medicine. To cross things off my list, to go to these places. To live your dreams when you are never even sure you will live until tomorrow.

To believe things will get better and that your life is good. That this life has value and so do you.

To move forward. And don’t look back.

 

 

Name your fear

Being chronically ill is an exercise in managing fear. There are so many of them and they all need attention in turn. You are afraid of the damage being done to your body. You are afraid of the damage being done to your mind. You are afraid of the damage being done to your relationships. And you are afraid of the damage being done to your life.

For me, none of these fears hold a candle to the one that looms largest in my mind: bloodstream infection.

Long before I learned about the intricacies of mast cell biology, I was an infectious diseases microbiologist. My first job out of grad school was developing rapid diagnostics for bloodstream infections. I spent thousands of hours studying pathogenic organisms like MRSA, VRE, E. coli, Klebsiella pneumoniae, Pseudomonas aeruginosa, and Candida albicans and learning how to find them as fast as possible. I learned a lot about how often these infections occur and the sepsis they are and how fatal they are. (Pretty fatal, in case you’re wondering). The science around bloodstream infections feels very much like my old stomping ground if my old stomping ground was a burned out car in a Mad Max wasteland.

I have a central line permanently implanted in my chest for the purpose of giving myself IV medications and fluids daily. I had my port placed in September 2014. For several months before that, I had a PICC line in my arm to give IV access. Having a central line massively increases the risk of bloodstream infection. PICC lines are generally considered riskier than a port but ports are not a whole lot safer if it is accessed all the time like mine is. The likelihood of a line infection is not insignificant. It is on my mind every day.

In the 3 ½ years I have had a central line, I have never had an infection. There are basically two flavors of infections associated with lines: local site infections, where the place that the line crosses through your skin gets infected by organisms on the skin, and line infections, in which the inside of the IV line is contaminated. Both can be serious but site infections are less serious. In many instances, a site infection can be cured by pulling the line and putting in a new one somewhere else. Line infections are so dangerous because the bugs inside the line get pushed into your bloodstream and pass through your heart. Pulling the line often does nothing and most people end up in the ICU for several days or longer.

I am a maniac about my line. I exert a huge amount of effort to keep my site sterile and immaculate. I spend a lot of time sterilizing the end of the line before I inject any meds or hook up an infusion. I am extremely careful when I dilute medications to inject. I use a checklist when I access the line to avoid contaminating anything. If I think there is even a miniscule chance that I contaminated something, I throw it all out and start over again. But the most important way I protect against infections is by not letting anyone who isn’t me touch my line. My home care IV nurse is the only person aside from me that I trust to touch my line. I avoid going inpatient or to the ER at all costs because there are so many more people and the risk of contamination skyrockets.

Despite all of this, I work myself into a frenzy a few times a year in which I convince myself that I have a line or pocket infection. (A pocket infection is a kind of site infection you see with ports, which are implanted under the skin). Naturally, these frenzies occur when I am traveling because otherwise they would be no fun.

Deaccessing the port means taking out the needle so that I cannot inject medication into the port. The port is connected to my bloodstream. Without the needle, the port is pretty impervious to infection. Putting a needle back into the port is called accessing. It is a sterile procedure and involves sterilizing the skin and then putting a sterile dressing over the needle. Like many mast cell patients, I have very sensitive skin. I react to the betadine and alcohol I have to use to sterilize my skin. (I have tried other sterilization procedures, this one is the best for me because I react much more with others). I also react to the adhesive of the sterile dressing, although it’s much better than the alternatives. (I use IV3000 dressings and many mast cell patients have luck with them.)

I have to deaccess my port to go swimming. If I go swimming every day, this means that I have to take out the needle and pull of the dressing every day. When I need to use the line again later that day, I have to sterilize my skin and put on a new dressing. My skin reacts badly to doing this daily. I often get hives and it’s hard to clean off the adhesive residue left by the dressings without using a lot of alcohol, which I also react to.

When my skin reacts like this, it doesn’t look that different from a site infection. It is red and itchy. It sometimes hurts. I sometimes get hives. It can make it much harder to figure out what’s actually happening.

I’m in Mexico right now. There have been a lot of hiccups on this trip but it is insanely beautiful here. It is a special place. It is also incredibly hot here so I have been swimming a lot. I have been deaccessing for 4-6 hours at a time. Yesterday, as I will removing the needle so I could swim, a little bit of white fluid came out with a few drops of blood and the needle. It kind of looked like pus. I spent the next several minutes pushing on my port and trying to assess for signs of infection with thinly veiled panic.

Seeing pus come out with the needle usually means a pocket infection, an infection under the skin around the port. But if you access a port while having a pocket infection, it can push some of the infection into the bloodstream. As I am heavily dependent upon using the port for IV meds and infusions daily, it’s not safe for me to not have IV access. After trying to collect myself, I called my IV nursing team at home. We talked through some scenarios and the likelihood of infection.

After some deliberation, I went to the doctor on staff here at the resort. I was very nervous that he would be unable to help or not want the liability. He ended up being fantastic. He ordered the high dose oral antibiotics my home team requested. He works at a local private hospital and was able to arrange someone to start an IV for me daily if the port did end up being unusable. Alternately, I could go to the private hospital daily and they would give me my fluid infusions and IV meds through the IV they placed.

After some more discussion, my home team felt it was okay to try and access the port that night if there were no more signs of infection (especially not getting any white fluid out when pushing on the port). If I accessed it, I could use it normally. If there were signs of infection, I would keep it deaccessed and stop using it until I got home. Then I would have an IV placed and we would discuss IV antibiotics at the hospital.

Last night, after several hours of deaccess and worry, I was able to reaccess my port. It is working fine and has had no other signs of infection. I’m still not sure what the liquid was and it’s possible it was the start of an infection. It is also possible that the white liquid was from a burst hive, or a precipitate formed by the betadine on my skin reacting with the water here, or some stray sunblock that hadn’t gotten cleaned off. Just something to keep things lively.

There are a lot of obstacles in the path of anyone who travels with major health issues. The fear of needing help and not having it readily available is the biggest one for me. Understanding all the ways something can go wrong is so often a hindrance. It is much harder for me to just take things at face value and not worry about it.

So I don’t really know what happened and I’m probably never going to. This morning, I was just grateful to wake up with a working port in a coping body in this beautiful, special place.

Unvacation

I used to pride myself on traveling light. It was a skill I cultivated through years of hosteling and backpacking. I travelled with 2-3 changes of clothes, basic toiletries, one towel, a journal, a book or two, a phone charger, a flashlight, a first aid kit, and a wallet. It all fit into a green backpack. It is remarkable how thrifty you can get with your belongings when you have to carry them around, when you unpack and repack it all every day to move to a new city. Even when I was older and visiting friends or staying in a hotel, I never brought much. It was a hard habit to break.

When I was able to start traveling again in 2014, this phenomenon resurfaced into a new form. I packed light on clothes and toiletries because I needed so much space for the massive amount of medication and medical supplies I had to bring with me. When I went to China, I brought a nesting set of three suitcases, a shoulder bag, and the backpack that holds my IV fluids and infusion pump. I packed three changes of clothes, one pair of shoes, a journal, a flashlight, a toothbrush, shampoo and conditioner, an iPad, a plug adaptor, an electrical converter, and a charger. I couldn’t fit anything else with three weeks worth of supplies and meds. I actually had to buy some more clothes and toiletries when I got to Hong Kong.

Having that much luggage – and heavy luggage at that – stresses me out. I can’t pull all of it around without someone else helping me. I often can’t lift it. I’m always worried I’ll forget something and not notice until I’m there because it is so much to pack and there’s much stuff in there to see what I missed just by opening and looking. I have checklists but it still makes me apprehensive.

I’m not the only one who feels like I pack way too much stuff even if it is all necessary. Airlines think so, too.

I have written prolifically about the trouble I have when checking in at airports. Every time, they want me to do or have done something different. No amount of talking to disability services or ADA lines has helped because the airlines give a lot of authority to the supervisor there when you present. It played out mostly the same way it always does. I cried. What I will add is this new fun fact: if you are wondering how to get the supervisor to stop treating you like a piece of shit and help you, the answer is to start filming. Her demeanor changed so fast I almost got whiplash.

The airline argued with me for so long that I almost missed my flight. Getting through TSA was a nightmare and much worse than usual. There was no time to get anything to eat or drink and I was literally the last person boarded because of how long the airline held me up. But historically my travel woes mostly resolve once I’m on the plane and I was still headed to Mexico so things were looking up. Some kind passengers helped me with my luggage so I could get out appropriate meds and get settled.

I landed in Mexico and got through immigration and customs without any trouble. But when I found the company that was supposed to transfer me to my resort, they had no record of me. I was very glad to be able to speak Spanish at that point because it took a lot of back and forth. They ultimately found that I was booked for the wrong date but agreed to just take me anyway. Great. I got into the bus with my millions of pounds of luggage and we headed to the resort about 45 minutes away.

So then I arrived at the resort which had my reservation listed as starting four days later and things got really exciting. I had to shell out $1400 to even get into a room while it was being sorted out or they were literally going to turn me and my rare diseases and 17 suitcases full of IV bags away and we would have to walk home through the jungle where it is 400 degrees and even the trees sweat. It was over an hour before they even agreed that I could HAVE a room at all. To say I was alarmed is putting it gently.

I figured that once I got into a room, my travel agent and the hotel would be able to sort this all out and I would get a refund. That has not happened. After a very stressful back and forth with the travel agent, I asked her to stop texting me and just let me know when I would get my refund. I explained about my health and that this situation was just too stressful and to please just let me know when it was taken care of.

She didn’t stop and even though I didn’t read the texts, it was the final straw. My port was deaccessed so that I could go swimming so I had to give myself an IM injection of Benadryl and steroids at the pool. I went back to my room to access my port and hook up IV rescue meds and fluids. Fortunately, I did not have anaphylaxis. The meds worked and I bounced back. I told her to stop texting me and just email me about the refund when it is ready. I blocked her number and went to go sit on the beach.

It has been a long time since I have been able to travel alone. I’m not really alone here (I came for a wedding so some of my friends are here, too) but I’m alone in the sense that I don’t have anyone with me most of the time. In my mind, this trip is sort of a test run to see if I could maybe travel on my own again. If it goes well, I could maybe try a short trip somewhere else on my own. I love traveling alone. I miss it a lot.

In science, when we want to see how well things work, we do something called latitude testing, sort of testing worst case scenarios to try and “break” the system. This is how you learn how far the system can be pushed before it stops working right. This trip has levied a pretty good attempt at breaking my system. It has been stressful and frustrating. My body is reacting to that. But I have safeguards built into my system and they are working. I had rescue meds right there. I was able to respond quickly and keep myself safe. I was in control in the way that I needed to be. I was stressed but not scared.

All the reservations/money nonsense aside, this place is stunningly beautiful. It is warm and breezy and the night air is perfect for walking. The chefs have been super attentive to my food allergies and I haven’t had any trouble with food. My minibar is stocked with Mexican Coke and my safe potato chips.

Things will work themselves out. Or they won’t. I’m sure I’ll be fine.


Postcards

I started collecting postcards when I was 14. My uncle died abruptly that year and I took a road trip with some relatives to visit his son several states away in Georgia. When we were getting ready to leave, my parents told me to send them a postcard. I spent an inordinate amount of time looking for (and not finding) postcards in every rest stop and 24 hour gas station between here and Savannah. I finally found some at a visitor’s center near Roanoke, VA. An obsession was born.

I have thousands of postcards now. I get a bunch anytime I travel anywhere, even if it’s somewhere I have been before. Even if I’m only passing through a state or country. Even if it’s just a layover. If I find out someone is going to a country I don’t have a postcard from, I am not shy about asking if they will grab me a few.

There was a long time when I was too sick to travel. I lost a lot of things in those years. Travel was one of the hardest. Planning trips had always been an escape for me, even if I were planning trips I knew I would never take. I would read guidebooks and research flights and destinations and places to stay. I would often take out my postcard collection and flip through them, a palpable connection to this piece of myself that had been removed by force.

My health stabilized in later years but there are still many places I will never see, places that are just too far flung to chance with my need for accessible medical care. I have tried hard to make peace with that. Some days are easier than others. It is still something I struggle with, a loss that remains raw even after so long.

In 2014, I flew to Seattle with my best friend to visit one of my other best friends. It was sort of a rematch. My previous trip to Seattle had suddenly turned into a clusterfuck when I suffered GI failure 3000 miles from home. So in 2014, I took myself and my PICC line and two pieces of luggage stuffed with meds and medical supplies to Seattle. And I made it there, and I made it through the trip, and I made it home. For the first time in a long time, I started to feel in control. Not really in control of my life or my body, but in control of something. Something I wanted badly, that was an essential part of me. The ability to travel.

In the year after Seattle, I honed my traveling with masto skills with some domestic trips. I went to Colorado, Florida, and California. In November 2015, after months of planning, I flew around the world and spent two weeks in Hong Kong and mainland China. It was exhausting and complicated and very stressful. But it was also amazing in a way that few things in my life have been. When I am having a super shitty day, I think back to the way I felt when I landed in Hong Kong. Or when I first saw the Great Wall of China rising before me as it emerged from an otherworldly fog. Or when I crossed the threshold into the Forbidden City. Just pure gratitude for being able to be there in that moment. And awe that I was able to figure out how to work around the incredible complexity of international travel with the need for daily IV meds, IV fluids, and ready access to emergency medical care.

I used to be adventurous in the more traditional sense. I wanted real adventure: hiking in the Himalayas, long boat rides down remote rivers, cliff diving, camping in Patagonia, watching the Northern Lights from a sleeping bag under the endless sky in Iceland. I will never be able to safely orchestrate many of these real adventures. But in a way, the disappointment of this is tempered by the fact that I have unwittingly uncovered a different type of adventure: learning how to game my body and my disease to let me take these bites out of the world.

This is my adventure. Figuring out how to fold my life up into complex origami shapes and walking along the edges, planting a foot in the space governed by my disease, the other in the space of exhilaration and dreams. I will never know the triumph of summiting Mt. Kilimanjaro. But so many people will never know the triumph of making it to another continent, of spending years to see a place you dreamt about, of eating and working and waking the morning after a day you thought would kill you.

I do not enjoy the experience of having mast cell disease. I like things about my life but this is real life and not a symbolism-ridden novel. If I could snap my fingers and find myself occupying a healthy body, I would do it in a heartbeat. Being sick amplifies everything but that means every good thing is amplified, too. Every time I am able to figure out how to experience something or go somewhere safely, it is such a victory. It is infinitely more satisfying than if I never had to worry about my health. And I think that’s worth something.

I’m flying to Mexico in a few days for the wedding of a family friend. I have never been to Mexico. I started preparing for this trip six weeks ago, started packing two weeks ago, and now it’s almost here. I am currently having an obnoxious episode of “normal people sick” (as distinguished from “masto sick” – I have a nasty cold). A few years ago, I would have been panicked that I wouldn’t recover in time to safely travel. But after all the work I have put into this trip, it just seems silly that something like a bad sore throat and wet chest cough could get in my way. It will be fine. My doctors have cleared me and I’m not concerned.

In three days, I will be in Mexico. In nine days, I will have seen Mayan ruins, swam in the Gulf, and warched my friends get married on the beach. And in ten days, I will be home. With postcards.

Other than flawed

I first fell in love with my body when I was 16. That was also the summer when I first fell in love with a boy; I don’t think they are unrelated. He loved me, too, and we spent most of the summer in his Jeep, driving around New England, camping in the mountains, hiking, climbing up fire towers. I felt strong, strong enough to hike for hours, to swim across a lake in the state park. And he liked my body, too, and I don’t think that’s unrelated either.

It’s funny how much perception affects memory. In my memory, I was slender with a flat stomach. This was my memory because that’s how I believed I looked and that flavors recall. But I have a picture in my bedroom of me that summer and I’m not particularly slender and my stomach wasn’t flat. I have a double chin in pictures from that summer. The difference was that I had not yet begun to care much about my appearance. I knew that I was strong and that was enough.

I never had a summer again as good as that one. I’ve had a lot of great times and had lots of adventures but there is really no substitute for self confidence and your first great reciprocated love. In the way that they always do, things changed. My body changed. And my perception of it changed, too.

When you are sick, your body is out of your control in so many ways. How it functions. What you use its energy for. The way it limits your life and controls your future. How strong it is. What it looks like. What I found is that as I got older, the way my body looked controlled my perception of it, and not the other way around.

Knowing that it is out of your control doesn’t matter much when you have gained 40 lbs of steroid weight or lost 15 lbs from vomiting up every single bite of solid food for months. I tried so hard to exercise even when I knew I wouldn’t be able to because I wanted so badly for my body to return to a shape I recognized and liked. Seeing my moon face in the bathroom mirror every morning was just one more reminder of how much my life was out of my control.

I have been practicing yoga since that summer when I was 16. In the last few years, I have gotten pretty at it, even when I’m feeling sick. 4-5 times a week, I put on a documentary and do 45-60 minutes of yoga. I have tried to use it in the past to control my weight but never had much luck with it. I can’t do intense enough yoga for that to be realistic. But it’s relaxing, stabilizes my joints, and helps keep my arthritis and muscular pain in check.

I do elaborate things to my hair in the morning before going to work. Since I do it myself, I hold up a mirror while standing in front of the bathroom mirror to see how it looks before leaving my apartment. This week, while I was doing this, I realized that I have muscle definition in my back and shoulders. I was shocked. Then I looked at my body in my full length mirror and realized that I have definition in other places, too. When I bend over, you can see my spine.

I gained back most of the weight I lost over the months when I couldn’t eat, healthy weight that I needed. I lost a few more pounds but not because I was so sick. After all this time, I am in the normal range of my BMI. My body is strong. Not all the time and not every day. But it is strong now even if it is sick.

17 years later, I am falling in love with my body again. It finally feels like something other than a flawed vessel holding me back.

 

The absence

My port is currently deaccessed. It has been accessed in the same place, 24 hours a day, 7 days a week, for three years. Except when the needle is changed weekly, or it is briefly deaccessed for another reason, like to go swimming, it is accessed all the time. I feel much safer with it accessed as it gives me ready IV access in case of bad reactions or anaphylaxis. As much as I do not like needing a port, I am very happy to have it. It makes me feel much safer and more secure.

Last weekend, I accidentally tore the needle out of the port. I already have a permanent hole in my skin from being constantly accessed and it made the hole bigger. I was able to get it accessed again safely but something will have to be done about my access site. I may need to get a temporary line placed so that I can deaccess my port for a few weeks and give my skin a chance to heal.

For now, I’m deaccessing for three hours three nights a week and slathering my site with MML (magic masto lotion – recipe at the bottom) to soothe the skin and the site. Meanwhile, I just finished doing yoga on my living room floor, and am sitting here, thinking about my port, the absence of the needle, and the other absences my disease has rendered me.

 

I didn’t immediately realize what was happening when I started losing my hearing. I imagine it is that way for many people. It was springtime and I was training to once again walk 60 miles in 3 days for a breast cancer fundraising event. I walked a lot, 8-10 miles at a whack, people watching and getting lost in my head, music loud in my ears. When I noticed that the music wasn’t as loud in my left ear, I assumed my headphones were broken. I bought new ones and shortly realized that I had the same problem. Because I am not overly bright, I bought new headphones AGAIN, only to discover that I was being targeted by a complex conspiracy to deprive my left ear of sound.

It was still a few days before I realized that all of these headphones worked fine and that it was my left ear that wasn’t. I could hear in my left ear but it was dampened. I was also beginning to have balance issues. I will never forget the moment when I understood that I couldn’t hear well on my left side and that there was no obvious explanation for it. I somehow just knew that this would not be something that could be readily fixed. I felt this wave of panic, electric and silent, hidden under the beat of my quickening pulse. Always there, waiting without a sound.

I was pretty terrified while I was losing my hearing. Over several months, I lost all the hearing in my left ear and most of the hearing in my right. I listened to music compulsively, constantly. I noticed the blank moments where there used to be notes. I noticed the empty spaces in words. It grew. This hollowness grew and swallowed all these pieces of the world where there used to be sound.

You learn to live around absence. It is an instinct to adapt to your environment. And even though my environment didn’t change, it changed for me. It was both terrifying and fascinating. The way I interacted with the world was fundamentally changed. I was present in a world full of absence.

As strange as it sounds, when I lost my hearing, I wasn’t terribly “sick”. Like I lost my hearing but my overall, day to day functionality was still very good. It was over the next couple of years that things took a serious turn. And you get sick, like properly sick, you lost things. It’s not always a lot at once but it is steady and unending. You lost friends. Opportunities. Money. Jobs. Dignity. A million little things and a lot of big ones.

One of the big losses for many of us with mast cell disease is food. I didn’t start really losing foods in a significant way until late 2013/early 2014. Things picked up speed and soon I was down to very few foods that I could keep down that wouldn’t trigger mast cell reactions or anaphylaxis. I have regained and lost a lot of foods in the last few years. This past winter was the worst patch in a while. I was mostly limited to liquids, and very few liquids, at that. I was still eating plain potato chips because without any other solids, I would wake up because of the hunger pains. I lost a ton of weight, a lot of muscle, and a whole lot of hope.

I started Xolair injections in late February. My expectations were pretty tempered but it was worth a shot. Within a week, I could keep down some solids. My stomach has become a lot of smaller and I still can’t eat a lot of food at once but I can eat again. I can eat things I haven’t eaten safely in years. I still react to certain foods but I don’t seem to react anymore to the process of eating.

I am very aware that I could lose solids again at any time. For now, I’m just trying to be present.
*Magic masto lotion (MML): a cream applied to the skin for hives, itchiness, eczema, really any type of mast cell skin irritation. It is made by mixing liquid cromolyn with whatever your safe cream or lotion is. Some of us have prescription liquid cromolyn ampules while other people making it using over the counter Nasal Crom. I put about 3 ml of cromolyn liquid in a plastic bag, squirt some cream in there, close the bag, mix it up, and then slather it on wherever I want. Always speak with your health provider before adjusting your treatment plan.

The Cost of Being Sick

I am fortunate to have comprehensive health insurance. The table below is what it would cost me to stay alive and functioning without insurance.

This is the cash price of my medical expenses for a year. A good year. Figures are rounded but based upon explanation of benefits (EoBs) for past procedures, medications, etc.

I have excluded the costs of living in a safe apartment, full of safe furniture, with utilities turned on, to be able to care for myself. I have also excluded the costs of skilled nursing that I do for myself (which saves about $250 a DAY).

I have chosen to ignore the fact that the stress of not having insurance would significantly trigger my disease, resulting in higher expenses. I have chosen to ignore this because it would also likely kill me so my expenses would drop off pretty quickly.

If I lost my insurance, used every bit of money, and sold everything I own, I could pay for less than a month of care.

I’m sure I’m forgetting some stuff. I’ll add them in when I think of them.

Item Cost Frequency Total per year
Standard meds (cetirizine, ranitidine, cromolyn, ketorolac, ketotifen, levothyroxine, magnesium, calcium, vitamin D, turmeric, prednisone, trimethobenzamide, ondansetron, metoclopramide, montelukast, gabapentin, fluticasone, glycerin, lidocaine jelly, and pain meds) $1,527 Monthly $18,324
IV meds (IV Benadryl, IV Pepcid, IV Solu-Medrol, 5% Dextrose in Lactated Ringer’s ) $1,600 Monthly $19,200
Specialty injectable meds (Enbrel, Xolair) $6,709 Monthly $80,508
Compounded medications $110 Monthly $1,320
As needed meds $85 Monthly $1,020
Epipens $650 (2 pack) Three times a year $1,950
Office appointments (routine) $980 (4/month) Monthly $11,760
Office appointments (specialty, procedure) $1,260 (2/month) Monthly $15,120
Surgical procedures (scopes, etc) $3,000 Twice a year $6,000
Lab work $1,000 (4/month) Monthly $12,000
Skilled nursing care $1,000 (4/month) Monthly $12,000
Central line supplies $800 (4/month) Monthly $9,600
Other medical supplies $150 Monthly $1,800
Imaging studies $1,800 Four times a year $7,200
ER Visits $4,400 Twice a year $8,800
Hospitalization $6,850 (per night) 7 nights a year $47,950
Major surgery $29,000 Once every other year $14,500
Ambulance $650 Twice a year $1,300
Dentist $325 Twice a year $650
Safe foods $450 Monthly $5,400
Transportation (Uber, taxis, gas) $300 Monthly $3,600
Phone (to schedule appointments, receive results, communicate about medical issues) $80 Monthly $960
Total     $280,962

 

The last kindness

My best friend’s father was recently diagnosed with a rare form of cancer that starts in the bile duct. It is the kind of cancer that moves quickly and is everywhere by the time you notice anything is wrong. The kind of cancer that still inflicts the truest meaning of that word: that it is to be feared because there is nothing to be done and it will be over quickly.

It has been my good fortune in life to have a good understanding of the human body, many of the diseases that affect it, and many of the treatments that help. For this reason, I am often contacted by friends or family when there is a nascent medical situation. Being able to explain things to people so that they understand what is happening is the very best thing I am able to do for others. I am grateful everyday that I can help with this when needed.

Priscilla and I were talking today about palliative care. We talked about managing anxiety and pain. I told her that at the end, they would make sure he is comfortable. “It is the very last kindness of medicine,” I told her. This is the best kind of medicine, the kind that is all about people and helping them and those who love them when their bodies fail. Medicine can do a lot. But it can’t do everything.

The fact that I can live alone and work and travel is a huge testament to the fact that medicine can do a lot. I would be dead or housebound without it. Even still, the toll taken on your body and your life by chronic illness is enormous. The toll it takes on the lives of others can also be significant.

I live close to my parents. They both help care for me every day. They feed Astoria and let her run around in their yard if I’m too sick. They make sure I’m awake to take my meds and make it to work. They take me to appointments and procedures. They sit with me for days after surgery. They drive me places. They pick up my meds. They still talk to me when I’m an asshole. You know. Parent things, for those of us who are lucky enough to have good parents.

But I am 33 years old. I should be independent in every way. And I’m not and I will never be. Every day, I am reminded of the fact that I require an extensive network of generous and caring people to effect my life, none sacrificing more than my parents.

After years of my failing health, my mom recently had to take FMLA leave to help take care of me and get me to my many procedures and appointments. The amount of time and energy she has to expend taking care of me is staggering. It is both humbling and sad. My parents are getting older. I should be taking care of them at this point in our lives. And I just can’t and I’m probably never going to be able to and some days, that is really, really hard. I worry a lot that the stress of caring for me will harm them.

Medicine has gifted me with many kindnesses. I just wish it could gift those kindnesses to those who love us and care for us, too.

Please send good energy/pray/send Reiki/cross your fingers for my dear Priscilla, the Balderas and Martinez families, and of course, her father.

Difference

You build your life around your secrets. Around other things too, but never more than your secrets. They are always there, in every place, the silent beat at the end of your words, the air you take in when you gasp. They are a comfort in their familiarity, a bane in their power. When you go to bed, it is just you and them, whispering to each other in the dark.

I have plenty of secrets. Most of us do. Most of them don’t matter. They remain secret only because I have never had occasion or need to reveal them to another person. But those aren’t the secrets I am talking about.

My biggest secret is that I am hopeful but I am afraid all the time. I have been this way a long time and so I am skilled at working around. I can talk myself into most things, even if I’m scared. But the doubt and uncertainty can be overwhelming sometimes.

I have another secret, too. I am scared that I have enough health to follow my dreams but not enough to achieve them. I grapple with this every time I have some wins and gain any measure of control. My mind immediately starts planning, lays out these paths to things I want badly but that my body could never accomplish. It is painful and frightening.

I think I’m finally coming to the end of this rough season. I am eating some solids again. I am reacting less. My mind continues to make plans that I don’t know I can achieve.

We so often equate success with results. That’s why we feel like a failure when we can brings these things we want to fruition.

But success is more than that. You have to try. The result may be the same but your heart knows the difference.