Tuesday, September 27, 2016

The Mastocytosis Society 2016 Conference

So this is the final post in my 5 post series on my recent trip to Orlando. I hope you enjoyed reading about my experiences at Disney! In this post, I'm going to do my best to summarize what I got out of the TMS 2016 Conference.


I say I'm going to do my best because I honestly am not even sure I know how to put some of it into words. Being in a room full of people who understand what life is like with mast cell disease whether patients, parents, siblings, friends, or doctors is such a unique experience. And the doctors...it was SO CRAZY to be in a room with doctors who not only have mast cell patients, but actually know more about it than we do as patients. That certainly doesn't happen every day! =P

The conference started Thursday evening with registration and a quick Q-and-A session about the schedule and format of the next 2 days. This was our first chance to meet some other people with mast cell disease and a couple of the doctors who came in early. The conference sessions officially started Friday morning, so after a short meet and greet, Mom and I headed back to bed since we were still wiped from our time at Disney.

Friday morning, Mom and I (and Leni) got up early to go for a run. As tough as it was to deal with Florida heat and humidity, exercise is one of the major ways that I manage some of my symptoms (POTS mostly, but others as well). Even on bad days, I force myself out there to get my blood flowing (literally, my blood vessels need some help to regulate my blood distribution properly) and wake up the rest of my body. After the run, we took quick showers and headed downstairs to the conference.

Both days of the conference had 3-4 morning sessions (aka lectures) given by the speakers, then a Q-and-A before lunch. After lunch was 2 more sessions, a Q-and-A, breakout groups, a break for dinner, then evening hang out time.

Friday morning, the first speaker was Dr. Joshua Milner from NIH. He spoke on some new research going on it his lab in regards to potential genetic links for specific forms of mast cell disease. Everything he present was new data and unpublished research, so I won't go into much detail (this session was also not live streamed for the same reason) but I will say it is really cool to know that this kind of research is being done at a facility as well known as NIH.

Day 1 and we're ready to learn!
Next up was Dr. Theoharides Theoharides, aka Dr. Theo. He is a researcher and doctor at Tufts University and has more advanced degrees than probably anyone! He actually spoke for 2 sessions Friday morning, on the classification of mast cell diseases and some of the neuropsychological impacts of mast cells in the brain. Both sessions were extremely informative, but actually raised a few questions about my specific diagnosis. Based on they way he described the differences between various forms of mast cell disease, I may actually have a slight different form than we had originally thought. More on this later.

Dr. Celalettin Ustun from the University of Minnesota (where Dr. Afrin is!) spoke about his treatment of aggressive forms of mast cell disease. Mast cell diseases are a spectrum of conditions ranging from symptom patterns that may be very life altering but will not impact life expectancy all the way to the most severe form (a type of leukemia) that often has a 1-2 year prognosis. Dr. Ustun focuses most of his research and treatment on the more severe forms of mast cell disease. This wasn't as relevant for me since I don't have an aggressive form, but was still interesting to hear about progress being made in research.

Last up before lunch was a short presentation from Blueprint Medicine and a Q-and-A session with the doctors who spoke. Blueprint Medicine is a company that has invested funding in mast cell research to find treatment options for some of the more severe forms of mast cell disease. It was really cool to see this company and a couple others there to learn from patients and doctors to better tailor treatment options as they continue to pursue this area of research.

Lunch was on our own, so nothing mast cell related, but I will say that Mom and I walked over to Disney Springs (right across the street from our hotel) for the second time in 2 days. We met a friend for lunch and made a second trip to Erin McKenna's Bakery (read more about it in my previous post here!) so I could try some more Kylene-safe baked goods!

After lunch, we split into breakout groups. They had a group for patients, caregivers, parents, and advanced disease. Obviously I was in the patients group. This was one of my favorite parts of the conference. Having the opportunity to just chat with other patients who "get it" and share our experiences and encourage each other...this is part of what I meant when I said I just don't know how to put everything into words...as Nick and I joke often, it was "all the feels." =P

Me, Leni, and Haylee, another mast cell warrior and our new friend!
The final 2 sessions of the day were a session on nutrition and mast cell disease by Bonnie Nasar, an Registered Dietitian with 2 children who have mast cell disease, and a session on anaphylaxis, when to Epi, and ER protocols. Both were informative, and it was cool to hear others experiences with ER trips, wondering when to use an EpiPen, and what counts as anaphylaxis vs. mast cell reaction (there is a difference believe it or not!). It also made me thankful for a local ER that is incredible in dealing with my reactions and anaphylaxis. I remember what it was like before we know what to do/say and the "fights" we would have with ER staff to get the treatment I needed. Having an official diagnosis has helped, but also having an ER that is so willing to learn and listen while using their expertise to treat me is a huge blessing!

Dinner was on our own, then there was a hang out time to just chat with other patients about life, mast cell disease, our interests, EpiPens, and more! I had a bunch of people ask about Leni and what she did for me, and it was great to be able to share how Leni has made such a big difference in managing my reactions. We were hoping to meet another service dog handler and dog, but sadly she ended up in the hospital with sepsis. =( Praying for a complete recovery and thinking of you!!

Leni and her squeaky frog having some much needed goof-off time!
Saturday morning began with another run and quickly packing as our flight left in the evening. The first session of the morning was the annual TMS board meeting. The board members shared what the upcoming year was looking like and where things were in terms of research. One of the big announcements was that official ICD-10 codes for mast cell activation syndrome have been approved for use!! If you don't know what that means, ICD-10 codes are what doctors use as your diagnosis when they submit things to insurance for coverage. If (when) codes for your condition don't exist, doctors have to use symptom codes which means they aren't actually billing for your specific condition and can make things challenging to get approved because it appears there isn't actually a diagnosis. Having these codes could make a huge difference in getting insurance approval for treatment! Plus it's more validation for those of us who spent years being told it's all in our heads/we're making it up.

Next up was Dr. Matthew Hamilton from Bringham and Women's in Boston. He is a gastroenterologist that specializes in managing GI symptoms in mast cell patients. He was the second doctor to raise a question as to whether my diagnosis is correct/complete. In his research and treatment experience, none of his mast cell activation syndrome patients showed elevated mast cell counts in the GI tract. Only other forms of mast cell disease showed the organ infiltration that I have on my biopsy stains. Some of my blood work does not point toward a different form of mast cell disease, but my biopsies and other blood work potentially could. Right now I seem to be falling in a weird gray area between 2 different forms of mast cell disease...stay tuned and I'll keep you posted as we investigated this further!

Leni tucked under our table on Day 2 and taking notes (or a nap...)!
The next 3 speakers were Dr. Roberta Zanotti from Verona, Italy talking about her research about bone loss in mastocytosis, Dr. Nikki Martinez talking about stress and trauma that comes from living with mast cell disease, and Dr. Gianina Hayes who spoke about how to approach doctors and appointments for optimal care. I actually missed a good bit of these because my stomach decided not to play nice and I was in the bathroom throwing up for a bit. Then I was talking with a few other patients about Leni and our diagnoses. Then I was talking with some of the TMS board members about volunteering. From the bit I did hear and what other attendees said, these sessions were just as good as the others.

There was a quick Q-and-A before lunch, then a break. I asked a question of the doctors on the panel during the session about some of the numbness patterns that I have been getting during exercise over the past few months. They weren't quite sure, so when we broke for lunch, I had the opportunity to talk with one more in depth about his thoughts on my on-going symptoms that we can't seem to explain. He offered his suggestions for additional testing (both to determine which form of mast cell disease I have as well as to investigate my neurological symptoms) and also offered his thoughts on whether I may possible have an underlying condition that may be primary to my mast cell disease (or secondary to it...which is the chicken and which is the egg is not entirely clear). Like I said before, I have some more work to do (translation: more testing to schedule) so that we can hopefully either confirm or rule out whether something else is going on.

This was one of the reasons that these conferences are so important for patients with rare diseases. While at this point, I have a good team of local doctors who are doing what they can to help me manage my symptoms, they are not mast cell specialists. They do correspond with my specialist on occasion, but the reality is that they just do not fully understand what mast cells can do in various organs. Now, even the top doctors still don't have all the answers, but they see it every day and know so much. It is truly a gift to have had these 2 days to be able to talk at length with 2 different doctors about their thoughts on my diagnosis and persistent symptoms. Often when talking with doctors, as a rare disease patient, I know more about my condition than the doctor I am seeing does. It can make determining appropriate treatment a challenge as we are not sure whether it will help or make things worse, and it's often a game of chance and holding our breath hoping it doesn't causes a major downward spiral. Being able to talk with doctors who know way more about mast cell disease than I do, was such a unique opportunity and incredible blessing!

After lunch, Dr. Mariana Castells spoke for 2 sessions, on the impact of mast cell disease in reproduction and pediatric variants of mast cell disease. It was interesting to hear what her experience had been with mast cell patients who had children and whether the children were later diagnosed and how the mother handled the pregnancy. Unfortunately, Mom and I had to leave after her first presentation because we had to get to the airport for our flight. I really didn't want to leave because it was such an incredible 2 days of being with people who "get it" and are also living this crazy mast cell life.

Fellow Zebra shout-out!
To be honest, I'm still processing some of what I learned and the whole experience. Life with a rare disease can feel isolating, and being reminded that I'm not alone in this was so special. It's one of those moments where you immediately connect with people because you automatically have something in common. We might share no similar interests or beliefs or political views or whatever, but we are connected through our unique medical journeys. Plus being reminded that there are doctors who care deeply about us as patients gives me hope that maybe someday there will be better treatment options and maybe even a cure. Seeing doctors and patients interacting because we are so deeply connected as fellow members in the mast cell community whether by choice (doctors) or by force (patients/parents/caregivers) is not an experience you get every day, especially as a rare disease patient.

I am so thankful that I was able to attend, and as I said earlier, am still sorting through some of my notes and the thoughts in my head. A conference like this is just another reminder that "alone we are rare, together we are strong." Hopefully this all makes sense, but please ask if you have any questions! My hope with this post is that it gives a glimpse of what the conference was like for friends who wanted to go but couldn't or for anyone reading who is just interested in learning more about mast cell diseases!

Sunday, September 25, 2016

Allergy-Friendly at Disney

So I know I just finished 3 posts about my experience in the Disney parks, but I realized as I was writing that there were a lot of small details that I would love to share with anyone else dealing with significant allergies. I couldn't fit all the little things in the previous posts because they were already bordering on being longer than my dissertation may ever be...so I figured I would do a separate post addressing this stuff specifically.

So what do I mean when I say allergy-friendly at Disney? I'm talking about how I managed the resort, the parks, dining, attractions, rides, etc. with mast cell disease (i.e. random allergic reactions, possible anaphylaxis) and severe food allergies. I went into a bit of detail in the previous posts, but there was a lot that I didn't mention, so that will all be here!

Before we even left for Florida, I had called the resort we would be staying at (All Star Sports) ahead of time to request chemical free cleaning. One of the challenges with mast cell disease is that I have a lot of triggers, but can't specifically pinpoint what it is that triggers me. We DO know that I can be very reactive to bleach-containing products and similar cleaners. Requesting this ahead of time meant that (hopefully) we could avoid this trigger immediately on entry to the room. I am glad to report success on this!


One thing we did not do, which I would seriously look into for future visits is to find where the smoking areas are located. The buildings at the resorts are smoke-free, but there are designated smoking areas (in the parks as well). For us, unfortunately, one of the smoking areas was between our building and the main building that had the registration area and food court. Every time we walked to get food or to talk with someone at registration, we had to run the gauntlet past the smokers. Plus, the one night it POURED, we had to take a long way to get back to our room (and get thoroughly soaked and chilled) because I needed to avoid the smokers (who were safely protected under umbrellas). One of the other smoking areas also happened to be at the other end of our building leading to a pool area which was almost equally as inconvenient...all the smoking areas are posted online on the resort maps, so I would want to check those out after booking and request a specific building or area that I knew would be away from some of these designated contamination zones.

Another thing I briefly mentioned (but you may have just skipped over it) was that Disney is a big fan of fog/smoke machines. Now, I know that in theory fog machines are pretty much just water and should technically be fine, it can be very difficult to determine if it is fog or smoke in the amount of time I might have before my body starts to react. Sometimes the use of these are labeled at the entrance, but other times they are not. If you are also extremely sensitive to these sort of fog/smoke machines, be prepared that the mists may appear out of no where. Many of the shows that use them have vents in the floor that suck the mist back down (to prevent it from obstructing the view for everyone watching). So just be aware and ready to move/leave if needed, but I was surprisingly okay sitting in the back row at one of these shows and had no issues with the fog/smoke.

Disney is also a fan of making their attractions as interactive as possible. This often comes in the form of a 4D theater experience with water being sprayed, seats moving, and the occasional scene-appropriate scent to give you the feeling you're "in the moment." Water was okay, although caught me off guard a number of times, and the seats moving/shaking might have woken Leni up from her snooze, but was otherwise uneventful. Now the scents...those were a bit of an issue. As I've mentioned multiple times throughout the blog (and as is common for many mast cell patients), scents are a HUGE trigger for me. Unfortunately, the worst offender was also the best ride of the whole trip...Soarin'. This was a simulated hang gliding trip through some of the most iconic sites across the world. Certain scents were sprayed at specific times to give you more of a feeling that you were actually in each location. There was nothing posted ahead of time, so we had no idea this was coming. Be aware that while I would HIGHLY recommend this ride, proceed at your own risk and be prepared, whatever that might look like for you. I would go on this again, but wear my mask to avoid fully breathing in the sprayed scents as well as pre-treating with my meds to hopefully keep any reaction at bay. Also, this was the only ride we went on that had this issue, but I'm sure it's not the only ride at Disney that uses scents. Don't be afraid to ask a cast member when you enter the line if they use scents (or a fog/smoke machine) or anything else that could potentially be a trigger for you.

GF/DF/SF Toast and Butter for Afternoon Tea
Such a pretty fruit plate!
The last thing I want to mention (again that I touched on briefly already) was how Disney managed my food allergies. We knew that they were supposed to be great at sit-down restaurants, and they were! They not only understand how to make allergy-friendly dishes, but understand the seriousness of cross contamination and that allergies can be a life or death situation. The chef will come out to speak with you and personally let you know what you can or cannot have. If they don't know, they will find out. They are incredibly accommodating and will do everything they can to make what you want. Our experience at the Afternoon Tea at the Grand Floridian was our first experience with Disney dining, and was the highlight of the day and one of the highlights of the trip. Our waiter and the chef were incredible at making sure I not only was safe, but actually had things I wanted. They didn't treat it as an inconvenience but as another way to make our trip special. Same experience later in the week at Sanaa. Their allergy protocol is fantastic, and they don't just accommodate allergies, but make you a meal that will make you forget there is anything "special" about your food compared to the non-allergy meals. No question, Disney has their allergy-friendly dining down in the sit-down restaurants. What I wasn't sure about was the quick-service food courts.

EnjoyLife brand!
Pineapple and safe Turkey!
Since we stayed in a value resort (all the All Star resorts), there was not a sit-down restaurant on site, only food court style dining. Since I am still on my feeding tube, I didn't need full meals so the first few days I just ate fruit and a few packaged safe foods. I was definitely very wary as to how they would handle severe food allergies in a food court setting. The last evening, I decided to see what they would do (since we were on official Trippin' with Jamie business) and figured if I didn't feel safe, I just wouldn't eat it. I could not have been more wrong! When I went up to the counter and told one of the cast members that I had food allergies, he pushed a button and said the manager would be out shortly. Less than 2 minutes later, the manager came out and asked who had food allergies. I told him what my allergies were and asked if the turkey would be safe. He not only told me that it was safe, but also explained how they prevented any possible cross contamination (no wheat products at the station, milk products only on half the kitchen, no soy used at all). Then he personally got some fresh turkey that had not been sitting out at the serving line, carved it himself, and brought it directly to me. I was very impressed at how they handled allergies even at the quick-service food courts, and I hope this helps anyone else with severe allergies take a deep breath and know that you can eat safely at Disney.

Eating an allergy-friendly cookies and cream donut!
The last thing I want to mention also has to do with allergy-friendly food. Disney Springs is the re-make of what used to be Downtown Disney. There are lots of shops, restaurants, shows, and various activities. It isn't super close to any of the parks, but is on the Disney bus line so you can get to it relatively quickly. Plus, there are a number of hotels (non-Disney resorts) very close by that are within walking distance. The reason I am mentioning this is for everyone with food allergies, there is a hidden gem in here! Erin McKenna's Bakery is located about halfway in between the fountain at the main entrance and Cirque du Soleil at the end. It is 100% gluten free, dairy free, soy free, and more (all nuts except coconut, egg, and a few others I think) free!! I was able to try a few different baked goods that I have not been able to eat in YEARS! In the 3 days we were close enough to walk over (and the next few days since I brought some home), I tried a bagel (good warm, okay cool), pumpkin bread (yummy), cookies and cream donut (very gooey and rich, but yummy), a whoopie pie (super sweet and made me sick, but tasted pretty good), a mint brownie cupcake (gave to my mom who loved it, I didn't), and a snickerdoodle (okay, but more a crunchy cookie which I'm not a fan of). Plus, we found out they ship, so as my stomach and mast cells cooperate, there may be more baked goods in my future! If you visit Disney and have severe food allergies, I would HIGHLY recommend taking a trip to Disney Springs just to visit this bakery (okay, you can do other things while you're there, too =P).

So I think that's everything I wanted to mention! Was this long enough for you?? =P I hope this is helpful for someone else maybe preparing to travel to Disney with various severe allergies. It took some planning and preparation, and we still had to be careful, but we made it work and had a great time!

Wednesday, September 21, 2016

Animal Kingdom with Mast Cell Disease and Service Dog

This was our final day in the parks. When we knew we only would be spending 3 days at Disney, we had to choose which parks made the cut. Magic Kingdom was a no-brainer...you can't go to Disney and NOT visit MK. Epcot was another must-do for us since it is the most popular "adult-ish" park, plus we had been there years ago and wanted to see how it had changed. That left Animal Kingdom and Hollywood Studios. We chose AK because if we had to choose between animals and movies/TV, animals win every time.

Leni ready to tackle her 3rd Disney park!
We got there when the park opened (again, seeing a theme??). To be honest, though, this park probably felt the busiest at its opening than either MK or Epcot. We had originally planned to start our day at It's a Bug's Life...then we saw that they use a fog/smoke machine. Halloween 2015 sent me to the ER after a similar machine was used at a wedding reception, so we decided skipping this attraction was probably a wise decision (plus we later found out it was 3D with bugs and spiders popping out of the screen which made my mom VERY glad we didn't stay =P).

Instead, we headed over to the Kilimanjaro Safari! This was the best ride at Animal Kingdom in our opinion. We had scheduled a FastPass+ for late morning, but the standby wait was only 10 minutes, so we decided to go about 9:15 am. I HIGHLY recommend going on this ride as early (or late if that's an option) as possible. The animals are more active morning and night, so if you go right away (or get on an evening/night safari) you have the best chance of seeing some species and activity in general. Also, it gets HOT! Even at the time we went, if we had to stop in direct sunlight (which we did to let an ostrich cross the road...), things heated up quickly.

Leni was allowed on this ride. Honestly, I was surprised they allowed service dogs on this ride since I figured it could be tricky with the safari animals if they saw her or vice versa. It ended up being completely fine. They had us sit in the front of the jeep and gave me a tether to connect Leni to a hook on the floor. I'm guessing this was to ensure she couldn't jump out if she wanted to chase an animal or something. Not sure because Leni didn't think it was anything special. Initially she was trying to look around and her nose was sniffing all over, but soon she settled and just snoozed the rest of the ride. 


After the safari, we needed a break from the heat, so we rushed into a Lion King show just as it was starting. The cast member at the door directed us to the disability seating so Leni had space which was fine for the first 5-10 minutes of the show...apparently Disney is a huge fan of fog/smoke machines because this show used them, too. We immediately got up and moved over to the side. I was hoping to stay because the show was looking pretty interesting, but wanted to be as far as possible from the fog/smoke. We had a cast member re-seat us in the back row which felt like a comfortable distance from the action since the fog/smoke was sucked down vents in the floor a few feet in front of the first row. This show was pretty loud and flashy, but fun! Leni didn't care at all and just lay at my feet.

Once we finished the show, it was seriously heating up. We pulled out Leni's cooling vest at this point, but it had rained during the show, so the ground was cool enough that she didn't need her boots yet (she was very happy about that =P). One of the things Disney is known for (at least in the food allergy world) is their Dole Whip. It is a pineapple ice cream/frozen yogurt that is dairy free (wheat free and soy free)! We had been hoping to find some for me to try, and we finally did! It was a nice cool treat on a hot day and fun to feel "normal" by enjoying some ice cream with my mom.

Allergy-friendly Dole Whip!
Next up was Kali River Rapids. We were actually a bit disappointed by this ride. =( First, the ride itself was underwhelming. We had been on a few similar rafting rides before, and this was not nearly as exciting. It was short and there was really only one section that added a slight thrill factor. We did get quite wet, which was nice considering how hot it was. The second part that was not so great was how they handled Leni. Just like at MK and Epcot, we asked for the portable crate so Mom and I could ride together. That was fine. Except a cast member is supposed to stay with her the entire time so she is not left alone. No one did. We got back to pick her up at the end of the ride, and could hear her whining and barking. The cast member by the line said she had been doing that almost the whole time, and when we went around the corner to get her, we found her alone...in a strange crate...she was fine, but definitely not happy.

The other thing I should mention was how I handled Herman (my feeding tube) for this ride. Since we knew we would likely get quite wet, I didn't want to have my backpack with me on the ride. That meant that I ended up stopping my feeds and unplugging Herman. I left my bag with Leni at the crate, and just re-hooked my feeds after the ride.

So funny story: It's been almost a full year that I've had Leni and over a year and a half that I have had Herman. That means it has been 11 months since I have done anything without both Leni and Herman and over a year and a half without carrying my backpack with me. Walking to the ride (and back) after leaving Leni and Herman at the crate was such a crazy feeling of temporary freedom! Haha =P Who knows the next time I'll feel that way, so I enjoyed those 27 steps of freedom from feeding tubes and leashes. Don't get me wrong, I am so thankful for both Herman and Leni, but it still felt freeing.

After Kali River Rapids, we left AK for the Animal Kingdom Lodge where we had lunch reservations at Sanaa. This was an African/Indian inspired restaurant located right next to the savannah so we got to watch giraffes, zebras, wildebeest, and crazy birds while we ate. Super cool! We choose this restaurant because both my mom and I LOVE Indian food, but it had been YEARS since I had tried any. Trying to communicate complicated food allergies in restaurants where the staff do not speak English as their first language is often challenging and we avoid as we are never sure whether it has been handled properly (plus the whole not eating solid foods for a while didn't help either...). Since Disney is so well known for food allergies, we decided to give this a try!

Allergy-friendly naan bread
Yet again, Disney went above and beyond not just in handling my food allergies, but in making sure I felt safe eating there. They had my allergies noted on our reservation, our server was notified, and the chef came out to personally speak with me. I was able to try some dairy free/wheat free/soy free naan (Indian-style bread) while my mom had regular naan, and they made me a lentil dahl and chickpea wat with rice that was completely safe. I so wish my stomach and mast cells would have let me eat it all because it tasted amazing!!! Regardless, I am so thankful to have been able to eat what I did and have the opportunity to enjoy some Indian food again!

Allergy-friend Indian/Moroccan food!! Lentil Dahl, Basmati Rice, and Chickpea Wat
Before heading back to our resort, we checked out a few other Disney resorts for some of travelers who will be here at Disney in about a month. This evening was relatively quiet as Leni and I were very exhausted and wiped out from the past few days. After a relatively minimally reactive day, I started having the initial symptoms of a potentially bad reaction. Thankfully extra doses of my emergency meds were able to help, and I made it through with no EpiPen needed! Three days at Disney and no Epi...that's a mast cell win if I ever saw one!!

The aftermath of 3 days at Disney...but it was worth it!

Epcot with Mast Cell Disease and Service Dog

Day 2 was spent at Epcot! I had been here years ago, and had very vague recollections of it, so I was excited to what (if anything) I remembered. The answer: almost nothing. =P Other than the iconic giant golf ball, everything about Epcot seemed brand new.

Ready for Day 2 at Disney!
The first thing we did when we got there was Test Track. Or at least half of Test Track...we missed the first part. When we get to a ride, we always ask the cast member if it is safe for service dogs. The answer here was no. We were directed to the exit where we were met by another cast member who took us to the crate where we could leave Leni during the ride. Then we went back through the exit to get on.

This attraction is 2 parts. The first part you virtually design a car to however you like and get a card with your car's details on it. The second part of the ride you scan your card (that has your car on it) and get in one of the cars that "tests" the specifications of each car (up to 12ish per ride car). As we would go through each testing station, we would see the rankings of which designs did the best. Since we had entered through the exit, we missed the part where you actually got to design the cars. That wasn't a big deal for me and my mom, and I'm sure if we had asked, they would have let us go back to the start, but it's something to be aware of if you're taking a service dog with you to this ride.

After Test Track, we had gotten our FastPass+ for Soarin' which was supposed to be one of the top attractions at Epcot. It was BY FAR!!! It was even worth the almost mast cell reaction... =P This was another ride where Leni had to wait in a crate. I was also a bit unsure how Herman would be accommodated since you end up 35-50 feet in the air...thankfully, there is a small basket underneath each seat and goes in the air, too, so all was good.

Like I said, we LOVED this ride! It was basically a flight simulator that took you all around the world to see some of the iconic parts of each continent. I almost wanted to go on again it was so good, except for one minor issue...to make if feel more real, there were scents associated with each destination on the screen. The elephants in Africa were fine, but when we got to the incense at the Taj Mahal and fragrances at the Eiffel Tower...things got a bit dicey. Thankfully, I had my service mom with me since Leni was in the crate. =P My sense of smell is not great so I didn't even notice the scents, but my mom did. Plus, as soon as we picked Leni up, she alerted me...so we took a quick break for some emergency medications and rest.

Thankfully, we were able to keep things under control with my meds and by staying in the air conditioning for a bit. We rode Living with the Land and Nemo, both of which Leni could ride. She just lay on the bottom of the boats and chilled. I think she was just glad that we weren't leaving her behind again. She especially liked Living with the Land because we were at the front of the boat, so she got to look out and watch, too.

Leni enjoyed being in the first boat on Living with the Land!
Next up we headed out to the World Showcase to walk around and see the different countries. We decided to ride Frozen Ever After (no laughing!!!!) since my mom is a travel agent and this is one of the most popular new attractions at Epcot. The wait when we got there was 60 minutes, so we had the chance to use the disability access pass. We went up to the cast member at the line entrance and asked for a return time. She scanned my magic band and told us when we could come back to get on. During that time, we went a few doors down to China (so close to Norway, who knew??) and watched a 360-degree film about the history of China. You're technically not supposed to sit on the floor in these theaters, but I was so worn out that I did. Thankfully, no one said anything, but we later found out they always have wheelchairs available at these theaters if you need to sit, so make sure to ask!

We went back to Frozen for our return time and were able to go through the FastPass+ line to get on pretty quickly. Leni was allowed on this ride, which we were very thankful for about 5 minutes after we got on the boats....because the ride broke down...yep, we got stuck on Frozen! They tried to get it up and running again, but after about 15 minutes announced that the ride would be closing due to technical difficulties (thank you, Captain Obvious =P). They said cast members would be coming around to evacuate the boats, and another 20-30 minutes later, we were finally out of the boats and on our way out! It was a bit challenging because Leni was not able to easily jump or climb out of the boat. We were able to pick her up and just carry her off, but a larger dog could have been a bit more challenging. It was also thankfully air conditioned, so it ended up actually being a good chance for me to rest for a bit.

Waiting to be evacuated off Frozen...thrilling as you can tell...
After our brief rest while waiting to be rescued, we kept walking around the World Showcase. Our last stop was in Canada to watch another 360-degree film about our neighbor to the north (where we learned about the nice wheelchair availability). When we finished the movie, we headed to see the Disney and Pixar Short Films. We saw 3 different short films which were in 4D (3D glasses plus seats moving/water spraying/etc.), so creative and fun to watch! Unfortunately we got stuck in a rainstorm on the way, so we were soaked and freezing while watching...On that note, I highly recommend bringing a rain coat. It totally slipped my mind when packing, but it would have helped me keep from freezing (which I was already doing in the air conditioning) when I had wet clothes.

Soggy Leni Bean!
Bus ride back to the resort, and we were done for the day! Had to strategically exit the park to avoid smokers (and I still needed some of my meds), but we made it back for day 2 at Disney with no EpiPen needed! This night, we only made it to about 5pm before I was already crashing and ready for bed (#oldladystatus #proudofit). Stay tuned for our final day at Disney!

Tuesday, September 20, 2016

Magic Kingdom with Mast Cell Disease and Service Dog

If you follow me on Instagram, then you know I just got back from a week in Orlando, Florida! The first part of the week was spent at Disney. After we tackled 3 parks, we went to The Mastocytosis Society 2016 conference. I'll be blogging about everything from this trip, but in an effort to avoid serious blog post overload, I'm breaking it into pieces.

Today is going to be the first of 3 similar posts...so bear with me or feel free to skip and wait for the conference posts or my next exciting updates about new medications, blood draws, and brain MRIs. In case the title didn't give it away, this post is about the first of three parks that we (my mom and I) went to at Disney in Orlando. This was "official" business for Trippin' with Jamie, so don't think it was all fun and games...we were working hard!

In the airport getting ready to board our flight to Florida!
I wanted to write these next few posts because as we were preparing for this trip, I read about a lot of other people's experiences at Disney with various chronic illnesses and service dogs, so I could get a better idea of how to approach the day and what to expect. Some of that info was so valuable, so I wanted to share my experiences with anyone else who may be preparing for a similar trip!

Our first day was at Magic Kingdom. We got there early because we heard the rope drop ceremony is fun to watch and because we wanted to go to guest relations. One of the accommodations that Disney offers in certain circumstances is a disability access pass. This is not a skip-the-line pass like it was years ago. Instead, you get to "virtually" wait in line. This means that you will still wait the same amount of time as you would have had to in the regular line, but you don't actually have to be there. We went to request this for a couple of reasons, both related to the unpredictability of my body and symptoms.

When my stomach/intestines decide it is time to "empty all contents" I have minutes (hopefully) to get to a bathroom. I can usually make it 10-15 minutes before things really go south (pun intended =P), but if we've been waiting 30-45 minutes for an attraction and have to all of a sudden rush off to a bathroom, we've just lost all that time plus our spot in line. Along the same theme of unpredictability, my mast cells can often run the show as well. If I get a mast cell alert from Leni, I need to start taking my medications quickly. It's not exactly appropriate/socially acceptable/whatever to start pulling up medications in syringes and unhooking/hooking up feeding tubes in the middle of a packed queue. Plus, if it's a "shock" reaction (goes from 0 to anaphylaxis FAST), I need to get away from whatever is triggering me, likely bug spray/suncreen/lotion/etc. Again, results in losing our spot in line, possibly after waiting for a while. Having the option of the disability access pass allowed us to wait elsewhere and have the flexibility to run to the bathroom or take medications as needed and stay out of packed lines. That said, we ended up not using the disability access pass at all at Magic Kingdom because we used the regular Fastpass+ system and/or got to rides or attractions as soon as they opened and avoided lines.

Like I said earlier, we got to the park when it opened for the rope drop. Once we got in the park, we went straight to the Seven Dwarfs Mine Train. At rides that service dogs are not permitted on, you have either the option of doing a rider switch where one person holds the dog while the other rides then they switch or they offer a temporary crate for the dog and a cast member will stay with them for the duration of the ride. Mom and I wanted to ride together, so we asked for a crate. It was set up just by the exit, so we loaded Leni up and then Mom and I were able to go on the ride and pick her up when it was over. I was nervous to see how she would do! This was our first ride, we had just entered the park, the area the crate was in was dark, and we left her with strangers...but she was fantastic.

Actually, she was pretty incredible all day. Her favorite part was watching the ducks while we waited in line to see Merida. Of all the things that could distract her at Disney, the ducks were the things that grabbed her attention...go figure... =P And yes, I did just say we waited in line to see a Disney princess...I almost can't believe I'm admitting to that...Nick and I saw Brave a few months ago and loved it. Apparently Nick thinks that Merida and I are similar in some ways, so he asked for a video of me and Leni saying hi. Am I a good wife or what??

Doesn't Leni look thrilled to be meeting her first Disney princess??
After meeting Merida, we went to AdventureLand to ride the Jungle Cruise and Pirates of the Caribbean. Both allow service dogs to ride as long as they stay in a down-stay in the boat during the ride. The Jungle Cruise was corny, but funny. Leni just lay at our feet as the boat slowly cruised along the river while our guide told all sorts of dad-quality jokes and kept us laughing. Pirates of a Caribbean was a different story...if you have a service dog, be aware that while this ride does allow them on, it's not just a quiet ride on a boat. At one point during the ride, it is pitch black and all of a sudden goes down a quick, steep drop and you may get wet (less so in the middle/back of the boat). Leni was not a fan. The sudden drop in the darkness caught her off guard. She sat up quickly and stuck her head in my lap which she does when she's a bit unsure. She went back down when I told her, but I could feel her restlessness and unease for the rest of the ride. I would not take her on it again.

After Pirates, I was fading. Leni had already alerted to a couple low sugars, but I was starting to feel the heat (guess who remembered Leni's cooling vest but not hers??). One nice thing about Disney is that there are A LOT of air conditioned places everywhere. Restaurants, shows, even some of the waiting queues for rides are all a nice, cool escape from the Florida heat. We took full advantage of this. While we were hoping to get to Tomorrowland and find some indoor activities, my body decided we weren't going to make it that far. Thankfully, in Frontierland, the Hall of Presidents was close by, so we took a break from the heat and learned (I mean, refreshed our memories =P) about our presidents. We got there earlier, but all of the shows have seating in the waiting areas as well, so I was able to sit down and recover a bit, watch the show, then was ready to go (-ish) again.

We stopped at a service dog relief area before heading to Tomorrowland. Not much to write home about...literally...the area was about 2 feet by 3 feet and wedged in some of the weird unused space between buildings. Maybe if Leni really had to go, she would have, but she showed little to no interest. At this point we also put on her cooling vest and boots as it was getting quite warm. I think if Leni had her way, she'd prefer to have burnt paws than wear her boots. My main take away from this trip was that she needs more work in her boots. While she walks fine and will still alert (we worked HARD on this...her paws feel different so she doesn't like to use them the same), getting her to tuck and lie down normally is a challenge. But, she's the dog, so she doesn't get to make decisions...at least not when it comes to her boots...

At a show (Carousel of Progress, I think) after pulling out her cooling vest and boots.
After our brief respite in the air conditioning, we headed back across the park. Let me just say, do not underestimate the power of Florida heat and humidity!! Especially if you're not used to it...we had only made it a short distance before I was already feeling like I was overheating again. We did make it to Tomorrowland, but my energy was quickly fading at this point. We went to watch 2 shows to give me some more time to recover and see if we had more time left or not. Leni alerted just before entering the first show so we took a few minutes for me to take my meds and evaluate how I was doing. My mast cells seemed to be relatively stable/cooperative after taking my meds, so we decided to keep going for a bit and see how things went.

Our last ride was Buzz Lightyear's Spin and Laser (or something like that =P). Don't knock it 'till you try it! You get in a 2-person car with a laser gun for each person and a spin controller in the middle. The whole ride has targets that you try to shoot and spin the car around for better angles. Sounds corny, but was actually super fun! However, this was ride #2 that Leni did not like. To get on, there is a moving walkway that goes along side the cars and you have to enter while the floor is moving. We ended up having them stop the ride so we could get on because it was also narrow and Leni couldn't climb on quick enough. Same thing getting off, plus now she was backwards since the cars are small and she wasn't able to turn around (or move much at all). I would probably take her on this again since she wasn't distressed, but would need to make sure the walkway could be stopped again to make sure she is safe getting on and off.

My energy was all but gone at this point, so we headed out of the park. We had made reservations for Afternoon Tea at the Grand Floridian (my mom is a HUGE tea fan), so we took the monorail to the resort. On the way, we stopped at a couple other resorts to take photos and just see in person to get a feel for them to better advise Trippin' with Jamie travelers.

The Afternoon Tea at the Grand Floridian was FANTASTIC!! By far the highlight of the day. Our waiter and the chef were so accommodating for my allergies. They were extremely knowledgeable about what was okay and not okay for my allergies and gave me options for substituting safe ingredients for my allergens. I posted on my Instagram (@kboka27), but I'll say it again here. Eating out with food allergies is always nerve wracking because I am literally putting my health (and life) in a stranger's hands. I am not sure the last time I felt as safe eating in a restaurant as I did at this tea. That said, I ended up just eating some fresh fruit and toast (gluten free, dairy free, soy free) with butter (also GF, DF, SF). I know that sounds boring, but I don't know the last time I felt safe eating something even remotely related to one of my allergens in a restaurant. Typically I'll go for foods that are naturally gluten and dairy free and just emphasize how important it is to avoid any cross contamination. It was nice to have them ask me what I wanted and they would just make it for me and know that they understood how to handle severe allergies. It was also cool to chat with our waiter who has a nephew with severe food limitations as well, so he understood what it was like to live with.


After tea we got back on the monorail to get back to Magic Kingdom, found our bus to the All-Star Sports Resort, and as soon as we were back, went to bed...Okay, maybe we took Leni for a dog walk (as opposed to a service dog time-to-focus-and-pay-attention work outing) and grabbed something to snack on, but I was pretty wiped from the day...I think I fell asleep before 8pm.

I fell asleep, so Mom and Leni had a cuddle session! 
So that was our first day at Disney in Magic Kingdom! Stay tuned for our continued adventures at DisneyWorld!

Thursday, September 8, 2016

"Livin' on a Prayer" (actually MANY prayers)

Ever heard the Bon Jovi song Livin' on a Prayer? If you haven't, stop reading now. Go listen to it. And embrace the fact that you're even more sheltered than this homeschooler...

Don't worry, you don't really need to listen to it at all because the main point I wanted to make is that this song is the story. of. my. life. Actually, just really the title, so I suppose if you've never heard it (while you might be seriously unsocialized =P), you're not missing anything.

Yep, livin' on a prayer is a good description of my life right now (and I supposed SHOULD be a description of our lives always...). Or at least jumping from prayer to prayer hoping to make it to the next one before things crumble...or while things crumble...whatever, same thing, right??

Anyway, the purpose of this post is to ask for some more of those prayers to keep me going for the next few weeks! As always, thank you for lifting up the prayers that I live on daily and coming alongside us on this crazy mast cell life we've got going on right now.

If you missed it, I'm now officially a year older!! I'll leave the suspense of the actual day up for debate since I'm not a fan of everyone knowing my birthday (funny story: I didn't even tell Nick my birthday until we were engaged and almost married =P). Let me just say that while I don't specifically feel a ton older, there is something about being 27 that feels practically 30. Runner friends chime in here, but as we all know, when you're running 10 repeats of a drill, when there's only 3 repeats left, it's pretty much already the last one before you're done...yes, you still have 3 more, but let's be real, the 2nd to last is pretty much the last and the last is definitely the last, so the 3rd to last is basically the last. So going on that runner logic, I'm basically already 30...NOT READY!!! Good thing I actually have 3 more years...

The next couple of weeks are bringing appointments and testing (surprise, surprise...), travel that will hopefully be fun, and stress that will definitely come from the traveling. Please be praying for well behaved mast cells and that my body with cooperate during these next couple of weeks.

So what's coming??

This week I have a few doctor's appointments. Last week I had an explosion of pain in my head and lost my vision in my right eye due to some jaw pain that had building for almost a week prior. Thankfully it is nothing serious, but I do have some pretty significant muscle tension in my jaw/neck/etc. that was causing sharp, shooting pain through my jaw and head. I saw a chiropractor last week who helped considerably, and I'll be continuing treatment for another few weeks. The appointments are fairly painful and often trigger symptoms for a few hours after, so prayers for a quick recovery this week would be great! Because...

I also have my Xolair injection this week! If you've been following my blog super closely and tracking every post, then you will notice that this is actually 3 weeks since my last injection. (If you're not that hard core of a follower, then guess what? It's been 3 weeks since my last injection =P). No, I did not have another bout of anaphylaxis last week (at least not that messed up the injection...) or mess up scheduling...this was actually intentional. Keep reading to find more details, but I will be traveling next week (when I would have been due had I gotten this injection on time last week). After talking with my doctor, we felt that it was better to go a week over while I was here in Ohio near my doctors than having the extra week happen while I was traveling. So yes, last week was rough, but I made it!

Xolair recovery 3 weeks ago
The last appointment I have this week is with the new neurologist I saw a few weeks ago. We had scheduled some testing at my appointment, and that will be happening this Friday. We are doing a repeat EMG (looking at nerve communication with muscles) and possibly some other testing depending on what the results show. I'm not really looking forward to this...I mean, I'm hoping we'll get some answers for my ongoing symptoms, but this was one of my least favorite tests I've had done...plus this time we're upping the ante and adding another component to get a better look at what my body is doing...not sure what that means?

Well, last time it involved sticking needles in my muscles and sending small electric currents through the needles to measure how my body responded to the stimulus. It wasn't specifically painful, but was very uncomfortable and caused multiple muscles to cramp pretty badly. If needles and electricity weren't fun enough on their own, this time we're adding a bike! Yep, this time we're doing the same thing, but instead of just lying down, I'll be on a stationary bike...sounds like as much fun as a barrel of monkeys...no seriously, I hate monkeys...Because a lot of my neurological symptoms only occur during exercise, we need to simulate exercise and do the testing during it...like I said...barrel. of. monkeys.

But that's okay, because once that is over, I have something super exciting to look forward to! Ready for it? Leni and I are going to Florida!! My dad and I are driving to VA on Saturday, and my mom and I will be flying to Florida on Sunday!! So this is what? Prayer request #4? Something like that =) Anyway, while I have recently had some success with airplane travel, it's always a big prayer that things will go smoothly. Anaphylaxis at 20,000 feet is not fun...

Photo from our last mother-daughter trip =)
So what's in Florida you might ask? Well, alligators and flamingos (maybe??) and turtles (seriously, it's a $500 fine if you run over one in your car) and I'm sure lots of other fun critters. While I am certainly a huge fan of native fauna in any given area, that's not the main reason we're flying down. We are going for 2 reasons. We'll be there for a week, half spent on business for Trippin' with Jamie and half at a conference.

I've posted a few times about Trippin' with Jamie which is the travel agency my mom started a few years ago. This past spring, when I had to stop working outside the home, I began working for her as an additional agent. (So give me a call to plan your next trip! =P) The first half of the week will be spent doing business scouting at DisneyWorld. Yes, I did just say we will be WORKING at Disney. While we will spend time in the parks, our main goal is to check out the various resorts and new attractions to be as up-to-date as possible for clients interested in going to Disney in the near future. Prayers would be greatly appreciated that I will feel well enough to get out and be active with my mom, that the heat will not be too bad, and that the hurricanes will find a new target while we are there.

After a few days scouting out Disney, my mom and I are heading to the annual mast cell conference. I am excited to spend a few days with other mast cell patients and some of the top doctors for these conditions. In being diagnosed with a rare disease, it is rare for us to meet in person (although I have met one other person in my area!). Rare in the USA means that fewer than 200,000 people have been diagnosed. It is believed that my form of mast cell disease (MCAS) may not actually be rare, but for now, is still considered to be until awareness reaches a point where doctors are familiar enough to actually identify patients that may be impacted and have the ability to effectively test for it.

Anyway, I am excited to spend time with other mast cell patients and connect with people dealing with the same things I am. While I have the best family and friends I could ever ask for, there is still something special about connecting with other people walking the same road I am. It will be a mix of lectures given by some of the top doctors for mast cell disease, and patient sessions where we can connect with others with our same diagnosis or that live in the same part of the country. I'm also excited to meet other people with service dogs for mast cell alerting!

So we'll be in Florida for a week, then we're flying back to VA. Nick is driving from Ohio to hang out with my dad and brother (who will be in from San Francisco) for a day, then we'll head back to Ohio. We'll get back on a Sunday, and I'll be up for my next Xolair injection on Monday.

Sometimes it's tough to have to schedule my life in 2 week blocks knowing I have to be able to get to my doctor for my injections to keep feeling okay...I wish that didn't always have to be the main factor in my life when it comes to planning anything...but it is, and I'm very thankful for the improvement Xolair has given me, so for now, I'll continue to spend every other week hoping I remembered cash for the parking garage (thank you parking garage attendant for giving me IOUs for the times I forget...) and being thankful to be able to do some traveling again thanks to these injections.

At the high risk of sounding like a horribly broken record, THANK YOU. I am constantly humbled and thankful for the many people praying for me and my family right now. I hope (and we're praying!) that some day I'll graduate from the urgent-prayer-needed list to the so-thankful-for-where-we're-at-so-let's-pray-it-stays-there list, but for now, I'm learning to be content with where God has me. I am so very grateful to be able to do some travel thanks to my much needed service humans (i.e. Nick and Mom =P) and Leni and a significantly improved treatment protocol that is helping me regain some of what I have lost. I'm not healed (yet) and still spend days at a time sick and unable to do much, but I also get longer respite than I used to and have moments where I can attempt things I wouldn't have even considered even just months ago (i.e. airplane travel, running, eating, etc.).

I look forward to the day that I can be a testimony of God's healing, but for now I can be a testimony of God's healing. Confusing? I know...trust me, I know. BUT I also know that God works in ways I couldn't imagine in my wildest dreams (and I have some crazy ones...just ask Nick =P). He is working behind the scenes bringing about healing in areas I never thought to pray for. I'm definitely improved from where I was this time last year, and for that I am incredibly grateful! In another year, I could be even more improved, and how awesome could that be?!?! In another year, I could also be sicker than I ever have been...unfortunately that's the reality of life with a chronic illness. Instead of worrying about what could be, though, we choose to focus on the healing I've already seen and enjoy every moment of "health" that I have.

And we do that by "livin' on a (many) prayer(s)" offered up for us every day. The joy and contentment that we choose to live in every day are not things that we embraced overnight. It has been a process of learning how to trust God's plan and the healing He is bringing and will continue to bring about in my life...whatever that healing may look like. I may not be the picture of physical health as this world imagines, but I am a picture of God's ongoing healing and sovereignty.

Tuesday, September 6, 2016

Medical Info Cards: Why I Have Them, What They Look Like, and Why You Should Care

So I've shared a few times with other medically complex patients (aka fellow zebras) the template for my medical info cards that I carry with me everywhere. I figured I would do an entire post about how I created them, what information is on the cards, and why it's important (both for complex medical histories AND for friends and family who spend time with us).

So, first, why do I carry medical info cards with me? The short answer is because everything wouldn't fit on my medical alert bracelet. The long answer is a bit more involved (hence, LONG =P). As my mast cell issues increased (and even before I was technically diagnosed), I was what we jokingly called a "frequent flyer" at our local ERs. Notice the plural there...more than one ER. Depending on where we were when my mast cells went crazy, we would typically go to 1 of 3-4 emergency rooms for treatment.

And that's where it gets complicated...each ER has multiple doctors on staff for both day and night shift and dozens of nurses. Then of course, not every visit was for the same reason...some were anaphylaxis, some were severe GI issues, the occasional head injury/passing out episode, and then you get the random we-have-no-idea-what-is-going-on-but-it-needs-some-help moments. Add to that my quite extensive medication list that I can barely remember when I'm completely conscious and feeling good let alone in the midst of severe pain/nausea/dizziness/anaphylaxis, my body's wacky reactions to all sorts of "normal" treatments, and our slightly unusual treatment protocol created by my doctors...all of a sudden my husband (or me if I happened to go into anaphylaxis without him around) is basically trying to recite a list of medical information longer than the Gettysburg Address and hoping the EMTs/ER staff are paying close enough attention to every detail that nothing gets missed...

So that's where the cards came into play. Like I said, it's too much to put on a bracelet, so I create these cards to be easily portable, able to communicate for me when I can't for myself, and just to make life easier for my husband and the medical professionals treating me. I have gotten great responses from doctors, nurses, EMTs, etc. who all said they wished every medically complex patients had that kind of information on them so they didn't have to play a guessing game to figure out what to do.

That said, I DO wear a medical bracelet. It is relatively simple with just the most important info on it and everything else on my cards. I use a RoadID as I found them to be great with the amount of space available and comfortable to wear 24/7.

Mine has 5 lines:
Line 1) NAME
Line 2) HUSBAND'S NAME AND PHONE NUMBER
Line 3) ANAPHYLAXIS (Because if something were to happen and I couldn't explain what was going on, this is pretty important for anyone to know)
Line 4) MAST CELL DISEASE (This is here so that the EMTs/whoever know that there is something unusual going on which might make them look for more information (especially after they read the final line) and so that if it is anaphylaxis, they see that it doesn't necessarily have to be from a "normal" allergen)
Line 5) SEE EMERGENCY INFO

And that's where my cards begin. In my backpack, I have a red neoprene bag right at the top that says in bold letters MAST CELL DISEASE EMERGENCY PROTOCOL. Hopefully that will catch their eye (especially after reading my bracelet) and they'll open the bag. Once they do, they will find 8-9 cards help together with a binder clip (super high tech here =P) that have all my emergency info on them. I'm going to go through what I have on each card (in painful detail) so that hopefully other medically complex patients can use this to create cards personalized for whatever specific needs you may have.

Card 1
The first card (i.e. the one I keep on top) is not specifically medical information. Instead it has this short paragraph (feel free to personalize it for your needs):
I have a systemic mast cell disorder called Mast Cell Activation Syndrome. It puts me at a high risk for anaphylaxis even from minor procedures or non-allergy related medical issues. I need to be treated immediately with the medications listed under ER Protocol to minimize the risk of an allergic response. I do not always present with normal symptoms, so these protocols have been compiled by my doctors to reduce my risk for severe reactions. Thank you for treating me today.

Card 2
The next card has my name, birthday, and address and 2 emergency contacts and their phone numbers. I also list my major diagnoses on this card.
**Be careful to not over-list diagnoses. As many of you know, when you live with chronic conditions, you collect acronyms and diagnoses faster than work experience. You don't need to list every last diagnosis you have ever received. List the main diagnoses and ones that make a difference in your treatment needs.

Card 3
This is where I list my ER Protocols. You will need to talk with your doctor about the best treatment plan for you should you end up in the ER. I have 3 sections for mine. The first is what we call my Standard Protocol. These are medications that I receive ANY time I end up in the ER regardless of the reason. Since I have mast cell disease, just stressful environments (I think ERs sufficiently qualify...) can exacerbate a reaction or cause my mast cells to degranulate even if that was not the main reason we went in. The Standard Protocol are medications that will help control any mast cell issues I may be having even if the main reason I'm in the ER is not specifically mast cell related. The other 2 sections are my Anaphylaxis Treatment Protocol and GI Treatment Protocol. Both of these go into detail on what medications and doses I typically need/tolerate for these two common issues that I may end up in the ER for. There are other reasons I may end up in the ER other than anaphylaxis or GI flare, but based on my dosages and treatments for these, we can usually come up with an effective and safe treatment plan based on what we already know my body can handle.

Card 4
On this card, I list all my allergies. I have a section for food allergies, one for medication allergies, and a section to simply state that I am extremely sensitive to medications in general and that when starting a new medication to start with a low dose and increase as needed. I also list things I know I am sensitive to but may not specifically have an allergy.

Card 5
Medications...so important to have this information with you. If you're like me, this list may be so complicated you can't remember it even on your good days...so always have a list of your meds! I list medications and supplements separately just so it is easy to look over. I list the name of the medication, what condition I take it for (i.e. mast cell stabilizer, GI motility, etc.), how often I take it, and how I take it. So an example would look like: Phenergan (GP) 12.5 mg/10 mL - PRN in PEG-J

Card 6
I have a card that lists all my doctors, their specialty, where they practice, and their phone number. Here is where you want to list ALL the doctors you see regularly. Even if it's not a specific diagnosis you listed on Card 2...if you have on/off blood sugar issues, you might not consider it a major diagnosis so you might not need to list it on Card 2. However, if you end up in the ER and they notice your sugars are going crazy, they can see you have an endocrinologist and can either call your doctor to see what is going on or tell you to follow-up. If you have a known issue that is being treated by a physician and you don't list their info, you could end up admitted for something you really don't need admitted for or end up having to wait to see an on-call doctor who might still admit you if it's something weird since they're not familiar with your body. So don't be afraid to list them all. That said, if you've only seen a doctor once or twice for something super minor, you probably don't need to worry about those.

Card 7
This card has random miscellaneous medical information that might not appear elsewhere. Customize this to your specific condition and needs. I list my height, weight, normal resting heart rate, normal resting blood pressure, and normal temperature. Just below that I have a disclaimer that says I run low on all the above and a "normal" reading is often HIGH for me. A temperature of 99.x F (just to clarify and not scare any non-US readers =P) is the same as 100.x F in someone who doesn't have a resting temperature in the low 97s. I also have a section I call PRE-TREATMENT PROTOCOL. This is similar to my Standard Protocol from Card 3. I put it here, though, because if I need scans with contrast (that I'm not allergic to) or uncomfortable tests, both could set off my mast cells and this pre-treatment helps keep that under control. The last section I have on this card is my feeding tube information. I list the type of tube I have, when it was first placed and by which doctor, when it was most recently changed and that doctor, the formula I use, rate I run it, total volume/calories, and how often and how much I flush it. Obviously if you don't have a feeding tube, you won't need this section. If you have other lines or implanted devices, you can add those here and make sure all relevant info is listed.

Card 8
Almost done, I promise! This card is what I call RECENT MEDICAL INFORMATION. Here is where I put things that may be new but temporary, so not quite needing to update the other cards just yet. I might put a medication I am trying for a few weeks here. If I'm doing an on-going test like a SmartPill study where you have a pill inside you for 2-5+ days and have certain limitations because of that, I'll put that here. If I have important testing coming up and have to avoid specific medications for some period of time, that goes here, too. Just whatever I don't need to add to the other cards just yet but could be needed for people treating me.

Card 9
Most people reading this will probably not need this card, but some of you will, so I figured I would share this anyway. This card contains my service dog information. I put Leni's name, age, and breed. Right under that, I list why I have her and what specific tasks she performs that could be relevant for EMTs/doctors to know. For me, I specifically say that she is trained for mast cell and low sugar alerts, that if she is pawing me she is alerting, and if my sugar is within a normal range, they need to treat me quickly with my Standard Protocol to hopefully prevent a severe reaction. I have a line that says "Do NOT separate from handler. Call (insert emergency contact here) at (xxx-xxx-xxxx) in an emergency." Then at the bottom I list a few commands that could be needed for EMTs/doctors to know to keep her with me but out of the way.

So those are my cards! I'll attach a picture of what they look like when I'm done. I print them, cut them out, and laminate them so they last. Then, as I said before, use a binder clip to keep them together and keep them in my mast cell bag in my backpack. I would highly recommend and encourage all chronic illness patients to have something like them with you! These have been so important many times for me, and I am so thankful to have had them.

These are 4 of my cards. Top left is the "cover" for the others. Top right lists my allergies. Bottom left is my service dog information. Bottom right is where I would list any recent medical info that might be temporarily relevant for my treatment.
When you're in a situation where you cannot speak for yourself, you NEED to have a way to communicate. These cards are a great way to make sure your specific needs/allergies/treatment protocols/etc. are communicated even if something happened miles from home with no one around who knows you.

And tell your friends and family you have them! It has made things much easier for my husband when we end up in the ER, especially ones we haven't been to before or if we're seeing doctors who haven't treated me before. He doesn't have to memorize the Gettysburg Address each time making sure he has the more recent updates, and the doctors don't have to try to remember a long list of complicated issues in the midst of dealing with a medical crisis. Plus, if you're out with friends who know you have medical issues but maybe don't know all the specific details, this takes the guess work away as long as they know to let the EMTs/doctors know you carry these cards.

I hope this was helpful for other chronic illness patients and my family and friends who now know (if you didn't before) that I always have these cards on me. (Side note: I also always have EpiPens with me...usually 4, so know to look for those too in an emergency =P). Please feel free to ask if you have any other questions and share your own ways of keeping your medical information with you!

Thursday, September 1, 2016

Dear (almost) 17-Year-Old Me

Dear (almost) 17-year-old me,

Happy birthday month! I can't believe it has been 10 years since I was you. You've just started your senior year, are deciding where to go to college, taking your first college courses, working, competing with Joey, playing soccer, involved in youth group...I'm tired just thinking back on everything I was doing when I was you. Enjoy it! Please, enjoy it.


What you don't know is that in 10 years your life will be so different from anything you imagined it would be. In 10 years, you will be me, looking back on who you are now and reflecting on life (and writing this letter to yourself...this is getting complicated...). Senior year is the last year of high school, some consider it the last year before you're an adult, but for you...it's going to be the last year before your body begins to betray you. Oh, you'll still be relatively healthy (whatever that means) and play sports in college (surprise!), but as I am looking back 10 years, 17 is kind of where it all began...what begins, you might ask...I'm not sure I can even put it into words, but know that these next 10 years will not be anything you would have ever imagined...

Don't get me wrong, some of those years will be the best of your life. You'll stress over your college decision, but it's okay, you'll make the right choice. Some of the friends you will make in college will be some of the best friends you will ever have. And yes, 10 years later, you'll still be in touch =)


You don't know it yet, but you'll end up playing 2 sports in college, neither of which you are even considering right now. You're going to end up deciding last minute to try out as a walk-on for the soccer team (you'll make it) and your senior year you're going to join...ready for it?? The SWIM team. Crazy, right? I thought so, too. But here's what I want you to know...enjoy it! It will be tough. You'll wonder why you chose to return for 3-a-day preseason training and 6 am swim practices. But choose to enjoy even the tough training sessions and hard practices. You don't know it now, but in a few years, you won't be able to do either anymore...and you'll miss it...some days A LOT. So please, (almost) 17-year-old me, enjoy those years of college sports and treasure the fact that you will forever be a college athlete...because when you're me, the health you had in college is going to feel like ancient history, not just a few years ago.


In about 4 years, when you're about to graduate, you're going to wonder how you can possibly be ready for the real world when you don't even know what you want to do with your life. Guess what? Give it another few years and you'll be me still trying to figure out what adulting looks like =P And you'll still technically be a student...yep, undergrad and gad school wasn't enough. You're going to go for a PhD! Professional student status for the win! Don't tell me you didn't see this coming...


Working for your PhD is going to be one of the toughest things you'll ever do, and not just because it's a PhD...Your health will have begun to steadily decline during grad school, and you'll start collecting a whole list of acronyms...and I'm not talking about BS or MS (although some doctors will be full of BS...).


Despite your growing health issues, you're still going to keep going with life! Guess that stubborn streak that kept you playing through injuries on the soccer field also helps you fight back against your own body when it won't cooperate. You're going to move 6 hours from home to work on that PhD I mentioned. I know, crazy, isn't it. Never saw that coming, did you?? (I know you didn't, I'm you after all =P) It's going to be scary to move to Ohio and know no one. You're going to both look forward to moving day and dread it. You will be equally excited about teaching undergraduate exercise science courses and terrified because you still can't believe you're old enough to be teaching college students.

The next few years will be some of the best and most difficult. You're going to meet your best friend and end up marrying him a couple years later. (Yep, 10 years down the road, you'll be MARRIED! For almost 2 years, too!) You'll find a church to call home and find a network of friends who will become your second family. You'll run your second marathon and convince your soon-to-be husband that running is fun (okay, maybe not quite, but he will run a couple of races with you =P)! You'll realize that you traded hot, sticky summers for windy, freezing winters but won't be able to decide which is worse.


Your relationship with God will change, too. It will grow when you experience loneliness when you first move to Ohio as you realize how important Christian fellowship is. You'll find a church that will challenge you to not only grow in your own faith but to serve and be a part of that growth in others. You'll be a part of the high school ministry and grow in your own faith as you lead a Bible study for junior and senior girls. You'll continue to make your faith your own as you learn more about who you are as a child of God, regardless of what is going on in your life....


And believe me when I tell you that life will challenge and stretch you. I told you that these years in Ohio would be some of the best and most difficult...and they will. Your health will fail you. You'll lose the ability to eat and wonder what life will look like when you wake up from surgery with a tube in your stomach and intestines. You'll lose the ability to run and even walk for a time. Doctors won't always have answers, and you will have to fight for diagnoses you never wanted. You'll have to let go of things you love like serving at church, teaching at school, running, and working. You'll look back on who you are right now (at 17) and miss the life you had.


But just like you never gave up in sports, you won't give up now. At times you'll feel like your health is just fading and there is no light at the end up the tunnel. You'll have doctors that won't understand and will be downright awful. But you'll also, eventually, build up a network of doctors that will do everything they can to help you. You'll learn that you don't have to let your feeding tube (who you will affectionately name Herman) limit what you do.

Your life will change. I can't lie and say it won't. But that doesn't mean it has to be over. Why am I writing this letter? To be honest, I'm not sure. I don't really have any words of wisdom to offer (especially since I've already lived everything I'm telling you about) and I certainly don't have all the answers. I just saw a new neurologist a few weeks ago and get twice a month injections just to be able to function. I still have Herman, am not able to work, and spend more time with my doctors than my friends. But believe me when I say that life is still good.


If there was one thing I wish I could share with you as 17-year-old me it would be that you are in control of NOTHING...except whether you are going to hold onto JOY. God's got you. It won't feel like it at times. You won't understand and will feel like He let you down. You'll want to find something else or at least just try to go it alone. I wish you would listen to me now because then maybe I could have saved myself some time, but I guess that ship has sailed. Anyway, if I COULD tell you one thing, it would be to choose JOY. When you're waking up from surgery with a feeding tube or going into neurological testing or facing repeat bouts of anaphylaxis...it will be scary, you won't know what to do or say, you'll feel helpless, but one thing you can do is trust God.


It is so much better to live in joy rather than fear. Trust me, by the time you get to be me, you will have tried both. Any chance we could skip the fear part?? Everything will be crazy, your body will betray you, but you will be held in the hands of a loving God who has promised healing, if not in this life, then in heaven. When you choose joy, you and Nick (your best friend and will-be husband) will be able to smile through tears, enjoy the quiet moments in bed when you can't stand without passing out, and laugh until you can't breathe (literally...be careful =P). Joy means you know that God has a purpose for your life even when you can't see it. Joy means that you can handle anything that life throws at you because you're doing life with God.


You're probably feeling overwhelmed right about now. I know if I was you (and I was), I don't think I would have wanted to know what was coming. Thankfully, you're already me so I'm not really giving you any spoiler alerts on your life. So I guess I'll end with this. I hope you're proud of the person I am today. It's not where I thought I would be (or where you think you'll be), but if I could go back, I'd do it all again. Everything. Even the hard parts. Because I wouldn't be me today without them. So choose joy and walk through the tough times knowing that you'll make it out okay (I AM you after all =P). You aren't going to believe what's coming in the next 10 years...but that's okay. God knows...and it's gonna be an adventure.

From 10 years in the future,
(almost) 27-year-old me =)