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travelling

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.

The really important things require much more than that

I have two best friends named Allison and Alyson who are both very, very into music. With few exceptions, all of my musical influences arrived to my ears via one or both of them. Alyson lives in Seattle. Alli and I went to visit her there in 2014 when I had a PICC line and 40 lbs of steroid weight and a constant flirtation with anaphylaxis.

While we were visiting, the three of us went to Portland, Oregon for the weekend. It was a really amazing and cathartic experience for me. It feels like that was when I began to reclaim myself and my body and my life. It was an experience I will never forget.

Alyson has always been the type of person who follows bands around the country because she is much cooler than I am. In the last few years, she has been obsessed with Kasabian, a British rock band. She flew into Boston for less than 48 hours to see them in Boston two days after seeing them in New York and a few days before following them to Chicago.

I hadn’t really heard much Kasabian before but tonight I went to the Kasabian with Alli, Alyson and Alyson’s mom, Charlene. We were having some hairy health care moments in the line outside, waiting to get in, so I wasn’t really sure how things were going to go. But I decided that if we got into the venue that I was going to be a huge Kasabian fan for the duration of the show. It didn’t matter that I knew virtually nothing about them. I knew I loved the people I was with. I was happy to be well enough to even go to a concert. So I was a Kasabian fan. Sometimes it’s enough to just believe something, even when there’s no good or logical reason for it. Believing is enough.

We stood right up front and jumped up and down and screamed at the band. I really shouldn’t have sang along since I knew literally no words but that has never stopped me before. I jumped and bounced and screamed for two and a half hours. The energy in the crowd was amazing and the show was great.

I said to Alli tonight that I think that concert years are like dog years. I am therefore 132 concert years old. It sure as hell feels like it. I’m going to need a cane to walk tomorrow. No thigh blaster workouts necessary.

The Portland Sisterhood does Kasabian

I have a Wall of Hopeful Things in my home office space, where I do most of my MastAttack work. It is covered with things patients or parents have sent me. There is a trinket dish on my Wall of Hopeful Things that says, “It is not enough to put your heart and soul into something, the really important things require much more than that.” I think of this as the MastAttack motto. You can’t build something without leaving pieces of yourself among the blocks.

In the last few weeks, I have painstakingly mapped out the next year of my personal, professional (work) and professional (MastAttack) worlds. I have monster goals for MastAttack for the next year. I have started putting together the materials for the course videos for the spring. I have been networking a lot to work towards some other MastAttack goals. I have professional development and program goals at work. I have lots of personal things that I have forced myself to find time for. It is an intimidating amount of life I am trying to fit into these time constraints. But I decided that I could do it, and as soon as I did, I became capable of it. You have to believe it and hold your nerve. So here goes nothing.

Hope you all are having a super weekend. Be on the lookout for some MastAttack announcements this week.

It is not enough to put your heart and soul into something. The really important things require much more than that.

Mastos abroad: The China Chronicles (Part 1)

It surprises me how often people think I am unflappable. A lot of times people asking questions say things like, “I know this is stupid,” or “I did a really stupid thing” or “You are going to think I am an idiot.” We all do dumb things sometimes. We all get confused.

I do not think you’re stupid and I do not think you’re an idiot. In that spirit, I would like to share some stories to ensure you that sometimes I am not just flappable but next level flappable. I flap. A lot.

People who have been following along for a while may remember that I went to China in 2015. Seeing the Great Wall has always been a dream of mine. I am fortunate to have a dear friend who lives in Hong Kong for half of the year. She has MCAS and we met because she came to Boston for treatment. She invited me to Hong Kong and suggested we take a tour to mainland China. After spending a few days in Hong Kong, we flew to Beijing on November 10.

There really was no way to prepare myself adequately for mainland China. Hong Kong struck me as a European city with Chinese sensibilities. Mainland China could be compared to nothing. It was like an all you can eat buffet that somehow also had a scarcity of food. I’m amazed I didn’t see anyone get run over while I was there since the locals just hurled themselves haphazardly into traffic. The pollution was unlike anything I have seen before and the entire city smelled like coal.

There was no social understanding that people should be orderly and wait in line or take turns. Louise, our tour guide, warned me, “Do not be a gentle lady.” I am not a gentle lady so I was tossing old ladies out of the way in no time. I will remember this for the rest of my life because it was the only time I have ever been called gentle and it will probably never happen again.

I had wanted to travel to Asia for years before I actually got there. The main reason I hadn’t gone was because my health is unpredictable and I was afraid to receive medical care there. I was also worried that they would confiscate critical meds or supplies. I don’t speak any Asian languages and I was concerned that I wouldn’t be able to communicate effectively in a health care setting.

Because of how nervous I was about needing medical attention in Beijing, I basically traveled there with nothing but meds and supplies for both routine use and emergencies. I flew with a set of three nesting luggage pieces, my backpack with infusion meds and pump, and another bag. The only things I brought that weren’t meds or supplies were three changes of clothes, sneakers, spare glasses, my journal, an electrical converter, a plug adapter, and an iPad. I bought everything else there or got it from Pat.

The other thing that had held me back from travel to Asia was food. I couldn’t eat soy, seafood, vinegar, or fish sauce. It is almost impossible to find food in China that does not contain any of those. I was fine in Hong Kong because I was staying at Pat’s house and we had ready access to fresh groceries and a full kitchen. I didn’t have those things in mainland China and didn’t expect to have them.

The staff at our hotel (the Peninsula) were unbelievably helpful and accommodating of our food restrictions. They came to our room to get a list of what we could safely eat and what we could not. They made us boxed lunches to bring with us on the tour. They made breakfast items that weren’t on the menu because I couldn’t tolerate anything else. Our dinners were carefully made without contamination. We didn’t need to get food anywhere else. Truly, it was an amazing experience. They could not have been more accommodating.

I sometimes print images of places I want to go and paste them into my journal as a reminder to live my life with purpose. The Forbidden City was one of those places. We visited it the day after we arrived. It was a palace for the Emperor that was more likely a small city. The day after we arrived in Beijing, Pat and I passed under a spectacularly large picture of Mao Tsetong and entered this magical place. It was stunning and amazing and better than I had imagined.

The following day was a day I had waited decades for. I was finally going to see the Great Wall of China. Our tour guide recommended that we visit the Wall at a less visited site called Mutianyu to hopefully avoid big crowds. As we drove out of Beijing proper, Louise told us things about the neighborhoods we passed and stories about Chinese history. We chatted about the effects of Communism on her generation versus her parents’ and grandparents’. She was intelligent and spoke really impeccable English.

I lost most of my hearing years ago. I can’t hear high pitched sounds really at all. As we were driving out, Pat turned to me and asked, “Can you hear that?” I couldn’t. I asked what it sounded like and she said she wasn’t sure. She kept hearing it. I kept not hearing it because Deaf. She started looking around in the car. “It’s like a chirping,” Pat explained. Finally, she asked Louise if the chirping was the ring tone on her phone.

We were pulling into a parking spot when Louise answered that she thought it was the driver’s. She asked him in Mandarin if it was his phone. After he parked the car, he reached into his jacket pocket.

I wasn’t looking at them when he pulled it out. I turned back to find him holding out a small cage with an enormous cricket in it. This was the biggest cricket I have ever seen. Easily the size of my palm and black. It was so large that you could see all the features of its creepy little face including its eyes looking back and forth.

If I had been aware that I was going to encounter a cricket the size of Rhode Island on this trip, things might have gone better. But I wasn’t so they didn’t. I’m not sure exactly what happened but I screamed and starting flapping my hands hysterically while making a noise that was sort of like turkeys gobbling.

“Is that the international sign for “get that thing the hell away from me?” Pat asked. It was in fact the international sign for get that thing the hell away from me.

I felt it best not to make eye contact with the cricket as it sized me up. The driver explained that this cricket was a fighting cricket and that people would have cricket fights and bet on the outcome. He kept it in his pocket in case he came upon an impromptu cricket fight. You know. Just to be prepared in case that happened.

Pat asked if this cricket was a champion. Louise translated his response.

“He wants you to know that yes, this cricket is the champion, and also, that if this cricket bites you, you will bleed.” And you know? I believe that. It had to be carried around IN A CAGE. This thing was clearly a menace.

 

This is a different cricket our driver brought the next day. Sadly, this cricket is not a champion.

 

 

The Great Wall was a good distraction from the fact that this cricket was sharing the van with us. It was so foggy. Like walking into a cloud. It seemed to swallow the wall and me with it in the cold damp. After we took the cable car down from the Wall, Pat and I went into a shop looking for something to warm us up. There was a little coffee shop in the visitor’s center. I ordered a small coffee to have something hot. Pat did the same. We sat at a little table outside drinking our coffee while we waited for our driver to pick us up.

For the record, this cup of coffee was the ONLY thing I consumed in Beijing that was not made by the Peninsula. Somehow, despite my excessive fretting over food and drink contamination in China, I decided that this shady little café was definitely capable of making me coffee safely and that it would be fine. I have no excuse. I just flung caution into the polluted Chinese wind.

 

The Wall disappearing into the fog

 

 

As I sat there, sipping my coffee and staring into this grey abyss, I thought to myself, “This is a lot sweeter than I thought it would be.” This didn’t worry me at all. I have no defense. I continued to drink it. I drank the whole thing in about five minutes and got into the van to go the Ming Tombs, the next stop on our tour.

As you might be expecting, that van ride turned into a circus real fast. About fifteen minutes after drinking the coffee, literally within seconds of each other, Pat and I both started having symptoms. It quickly became apparent that this coffee wanted out of our bodies. For me, the coffee felt that vomiting would be the path of least resistance. For Pat, it charged through her GI tract all the way down.

The road we were driving along was punctuated by people sitting on the side of the road and burning hell money, a ritual that they believe will provide their deceased loved one money to spend in heaven. Literally every 100 feet or so had what looked like a small garbage fire being tended to by locals wearing masks. When we finally got to a stretch of road that wasn’t hosting small fires of fake currency, I told Louise that we needed to pull over. I threw up on the side of the road. I threw up enough that poor Louise got out of the van to pat my back while I puked everywhere. Making memories.

I felt better after I threw up but Pat was still having some problems. Our tour guide assured us we were only a short distance from the next stop. After fifteen very long minutes, we jumped out of the van and ran to the bathroom. We told the driver to park as close to the bathroom as possible in case we needed to get out of there quickly. Our tour guide ran with us while the driver went to find a parking spot.

Once Pat was safely in a stall, I walked out of the bathroom to see if the driver had found us. As I was looking for him, the gates flew open on the far side of the parking lot as a van came screeching through the fence. The van pulled up close to the bathroom and slammed on the brakes. The driver jumped out and opened the van door so his passengers could get in quickly. It was our driver.

The good news is that Pat did not shit her pants. The bad news is we were trapped in that bathroom for a while. There were a couple of chairs near the bathroom entrance that we commandeered for a while while we waited to see if this was going to pass or not. Long suffering and committed Louise knelt down on the bathroom floor holding a map and calmly telling us the history of the site while we waited to see our intestines would continue wrenching. We learned all about the Cultural Revolution and how adherents to communist philosophies had permanently damaged ancient monuments and works of art. On the bathroom floor. At a very busy tourist attraction.

After about half an hour, we told Louise that we were ready to brave the world outside of the bathroom. She was very pleased by this turn of events. She led us into the main courtyard and told us about the people entombed there. There was a door where it is traditional for people to walk through, then to walk backwards and hop over the threshold backwards so as not to be trapped in the land of the dead. I was feeling pretty cocky since I hadn’t puked in 40 minutes so I went for it. (I did not get trapped in the land of the dead, if you’re wondering. I think.)

I looked at Pat to ask her if she was feeling up to it. Her response was, “If I don’t keep both feet on the ground, something is coming out of one end or the other and I’m not sure which one.” She’s a lot more practical than me. We carried on with the tour.

Pat and I had some other adventures in China that I’ll get around to writing about someday. I’m sure we’ll have more if I ever get to Hong Kong again.

Anyway, see my point? I’m totally flappable. Your questions are not stupid. You are not stupid. It’s all good.

More posts about my trip to China here:

Great Wall

Just before waking

River stones

The West Coast Florida Tour and an update on Kristina Brightbill

I realize how lucky I am to be able to travel at all but that doesn’t mean it is easy. Travel always takes a lot out of me. I start premedicating days in advance. I count and organize meds and supplies to pack and repack. I try to prepare myself for the emotional and logistical stress of air travel with luggage full of IV bags, line supplies, and dozens of bottles of pills and vials of IM and IV meds.Even when everything goes smoothly, I need a ton of meds, sleep, fluids, and easily digestible food to recover and get closer to my baseline.

The fact that I travel as often as I do is largely a testament to my friends. I am lucky to have such incredible people in my world that all the strain and stress of traveling to visit them is worth it. Being with people like that has a way of pushing away all the stressful things about my life. I also come home feeling peaceful and more like myself.

I met my friend Pat a few years ago when she came to Boston for MCAS treatment. She lives in Hong Kong for most of the year and was my coadventurer on my trip to the mainland China and the Great Wall. She prosecuted murder trials in Toronto for years and has an endless reservoir of fascinating stories. Her husband is wonderful and the most organized prepared person I have ever met. Their daughter is currently in university and is funny and bright. She actually did some behind the scenes organization of the blog this past spring. This family is very special to me.

On Thursday, they kindly drove me two hours away to see my friend, Kristina, and her family in Sarasota. I met Kristina a few years ago when her son had no safe foods and was reliant upon her breast milk produced by Kristina while she was surviving on a two food diet.

In October 2015, Kristina had a catastrophic stroke in her brain stem. I have written about this in great detail and am not going to rehash it but you can read about her here, here, and here.

Kristina has locked in syndrome as a result of her stroke. Her mind is completely intact but she was completely paralyzed and unable to speak. People ask about her a lot and Kristina said it was okay to give everyone an update.

The scariest part of Kristina’s stroke was the amount of things her family was told she would never do. They said she would never be able to communicate. They said she would never breathe without a ventilator. They said she would never eat. They said she would never regain any movement. They said she would never recover any of the function she lost.

Kristina started recovering some motion in her head, neck, and face when she went home in June 2016. She could communicate by spelling words by blinking when someone recited the alphabet to her. It was a very slow process and very taxing for Kristina and her family.

Kristina worked in physical therapy before the stroke. When she went home, she had an amazing support system of friends who were physical therapists, occupational therapists, and speech/swallow specialists. These incredible people donated their time to give her many hours of therapy not covered by her insurance. These people, along with Kristina and her relentless family, have helped her to regain an astounding amount of function.

Kristina can move her arms and legs, although some of the movements are very small. She can control some fingers and her left thumb. She has much better facials and eye control. She is able to use a Tobii system to communicate now. She types out the words and the system says it aloud. It also allows her to text, make phone calls, and use social media. This incredible technology has given her a voice after almost a year and a half of not having one.

Kristina is getting stronger by the day. While I was there, she did edge of bed exercises where she would balance herself with only support at the very bottom of her back. Her core is now strong enough to support her upright. She can turn her head while sitting up also. She sat up for about twenty minutes without needing a break!

Kristina had a tracheostomy to help her breathe since the stroke. She now breathes normally and medication changes have allowed her to have the trach removed. She also recently had a picc line removed because she no longer needed it. She can chew and swallow and eats a fair amount of purees. She still gets a lot of nutrition through feeds in her G tube but is working towards eating mostly by mouth.

Her overall health profile is hugely improved. She is pretty stable these days. Her stamina is much better. She is able to go out for appointments and errands with a specially equipped wheelchair van. She recently visited an organic farm to discuss growing safe foods for her son who has MCAS.

Last year, I visited Kristina on August 10. She was still Kristina but she was in a bad place emotionally. I firmly believed that if she could get to a better place with her communication that she would regain a huge amount of emotional health.

I visited Kristina this year on August 10 and am thrilled to report that she is in a much happier place. She made the decision several months ago to move in with her parents to make it easier to ensure that she was always getting the very best care.

Her son is with her five days a week and he loves his Mama. She talks to him with her Tobii software and he loves it. He pushes her wheelchair around and likes to eat and watch tv sitting in her lap or in between her feet on the footrest of her wheelchair. His MCAS is also improved although there have recently been some problems with his diet. I am confident that with some effort that we can get him back to a good place.

I stayed for a while and Kristina and I gossiped and shared some funny stories. It was lovely and such a treat to see her feeling much more like herself. Her mind is so clear and her energy is so good and against all odds, her body is continuing to recover. There is literally no medical precedent for this. Kristina is the only person with locked in syndrome known to have regained function after almost a year of no gains and she pretty much did by sheer force of will.

When someone’s body does things I don’t understand, I assume that there is a scientific explanation and I just don’t know what it is. But I have never felt that way about Kristina. Her astounding recovery feels supernatural. It feels like an actual miracle.

I was sad to leave Kristina but was excited that she felt up to meeting my friends who have heard so much about her. She met Pat and her daughter when they dropped me off. Later, she met my friend, Nicole, when she picked me up that night.

I was sad to leave Kristina but was excited that she felt up to meeting my friends who have heard so much about her. She met Pat and her daughter when they dropped me off. Later, she met my friend, Nicole, when she picked me up that night.

Nicole and I met years ago in a mast cell FB group. She was the first person I knew other than myself who also had a port that she accessed and used herself to administer routine and rescue meds. She is half my adventuring partner and half my adopted little sister. I’m currently at Nicole’s horse farm outside of Ocala. This place is so beautiful that I can almost feel it nourishing my soul.

Tonight, I went to a dinner party her parents were hosting and met a bunch of great people. A couple attending did not speak English and I was glad for the opportunity to connect with them in Spanish. It was just an all around pleasant and fun night.

I’m going home tomorrow night. I never feel like I have spent enough time with my friends but it is good motivation to come back soon. I expect I will be back next summer. In the meantime, I am so very grateful to be living this life with these amazing people, and for the refreshed mind and spirit they give me.

Many thanks to all the people who keep Kristina in their thoughts and prayers, it means a lot to her. Kristina’s story is so powerful and a lot of people have connected with it, including lots of people who don’t really know her. A community of caring people can be so encouraging and uplifting.

Alright, time to wrap this up. It’s late and I have an appointment in a morning to ride a horse named Porkchop.

August 10 is Kristina Brightbill day!

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.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 18

I answered the 107 questions I have been asked most in the last four years. No jargon. No terminology. Just answers.

27. Can mast cell patients travel? Can they fly?
• This is very individual and dependent upon your personal health situation, your ability to manage bad reactions on your own, where you live and where you want to travel. I have been fortunate enough to be able to travel widely through exhaustive preparation.
• You should always talk to your care team when you are thinking about travel. You must have a detailed understanding about how to recognize when you are headed for trouble, what you should do if you get into trouble, and when you should pursue emergency care.
Always carry rescue medications, your emergency protocol on provider letterhead, and a sheet listing your diagnoses, daily meds, rescue meds, and any special precautions. List over the counter medications as well.
• Make sure that all of your medications are legal in the country you are traveling to. Importantly, diphenhydramine (Benadryl) is illegal in some countries.
Get a fit to fly letter detailing what medications you need to bring onboard with you on letterhead from your doctor.
Call the airline directly to describe your needs. If you need to use medical equipment during the flight, tell them when you call and have the model number/ serial number ready.
• Also notify the airline if you need them to refrigerate medication for you.
• If standing is a trigger, or you have difficulty lifting luggage or carrying your bags with you, ask for a wheelchair to meet you at check-in and take you through the gate. It is my experience that when bringing a lot of medications through experience, it is easier to do this when you are in a wheelchair being escorted by airport personnel.
Identify safe foods at your destination. Many countries do not allow you to bring food in from another country. However, you can often bring solid food through the security to have on the plane.
• I premedicate heavily and many other mast cell patients who regularly fly also find that helpful. Speak with your providers about what protocol works best for you.
• Flying is unbelievably dehydrating. Hydrate well in the days before flying, the day of the flight, and while flying.
• Keep in mind that if the flight crew is uncomfortable with you flying, they can refuse to let you onboard. Emphasize that it is safe for you to to fly and that you have a fit to fly letter. If you are not able to manage a bad reaction alone, please do not fly alone.

For more detailed reading, please visit these posts:

How to travel with mast cell disease