Wednesday, July 20, 2016

Special Needs Traveling

If you read my previous post, then you know that last week Nick and I traveled to Austin, TX for a wedding. I thought I would do a blog specific to what my experience is like traveling with mast cell disease and a service dog. In case you were wondering, it's a bit more complicated than just packing and leaving.

One of the challenging things about traveling with a chronic illness is that there is no wiggle room for error. If Nick forgets a belt or tie, we can run out to the store and get one last minute. If I forget a medication or my nebulizer, it's not so easy to replace...

So what does packing for a trip away look like living with mast cell disease? Here goes!

I have one duffel bag that I typically use for all my medical supplies. If you are flying, you can bring an additional carry-on bag (beyond the 1 per passenger plus 1 personal item) as long as it contains ONLY medical supplies. Since we were flying, we took advantage of this option. I never check any medical supplies. I cannot risk this bag getting lost or delayed, so I always carry it on (translation: Nick carries it for me).

Here is what goes into my medical bag:
  • Herman supplies: feeding tube bags, scissors, formula, pump charger, tube pads
  • Medications: weekly pill organizer, extras of all my medications in original bottles, emergency medications, syringes, extra test strips, epi pens
  • Miscellaneous supplies: gauze, alcohol swabs, q-tips, antibacterial wipes, hand sanitizer
  • Leni supplies: food, collapsible bowls, toys (usually a bone and squeaky), boots, cooling vest (or coat if it's winter), travel bed, treats 
Because Leni is a service dog, she is considered to be medical equipment and not a pet. This means that any of her supplies can also be packed in my medical bag. Another thing to note is that the amount of these supplies depends on the length of the trip. I always pack 1-2 extra days just in case we get delayed. I also sometimes ship my formula ahead of time since it can add a lot of weight. For this trip, though, because we were only going for a long weekend, we chose not to ship my formula ahead of time. That meant I (Nick) carried it in my medical bag with my other supplies. 

Beyond just my medical supplies, I have another bag of "regular" travel stuff. Even with that, though, there are some considerations that I have to make before packing. Here are some of the things I had to consider when packing even just my clothes for this trip.
  • We were traveling to Texas. In July. Can you say HOT? My body does not regular my temperature properly so being in a hot environment requires careful planning and awareness. One way we managed this was with my cooling vest. I have 2 but the one that I prefer works through evaporation. It is soaked in cool water before use and as I am out in the heat, the moisture evaporates which helps keep me cool.
  • One of the ways that I am able to manage a lot of my POTS symptoms is through exercise. I really cannot just take days off or I will struggle. Especially in an already stressful environment, it is important for me to make time to workout. This meant that I also needed to pack clothes for running or the gym. Because of my feeding tube, I use an adapted SPI belt to prevent it from swinging around during exercise. I also use a Camelbak to keep my epi pens, emergency medications, and medical information on me whenever I am exercising. I have running shoes that I use for...running...that I brought in case we were able to run (depending on the temperature in the AM). In addition, I use compression socks for multiple reasons during my workouts that I needed to pack, too. As you can see, this adds almost an entire extra bag with workout gear and miscellaneous supplies that go along with exercising.
  • Since we were going for a wedding, I needed a dress. Yes, I did say that...I do, on occasion, wear something other than athletic clothes =P Anyway, choosing a dress is complicated and not just because I'm picky or don't like wearing them. Because I have Herman, I need a dress that will work with a feeding tube. What does that look like you might ask? The dress can't be super tight because Herman sticks out a bit and it is very uncomfortable if it is compressed by tight clothing. It also needs to be somewhat flexible and a soft material because one of things I deal with fairly regularly is bad swelling. On a bad day, my skin is very sensitive and tender to touch so I need something that won't irritate it further. It also needs to be adaptable for Herman! I usually have him come out the bottom of my shirt...not really an option with a dress. It needs to have a way to be adapted so I can still use Herman while wearing it. Do you see how this gets complicated?? And we haven't even gotten to the shoes yet!!
  • Layer, layers, and more layer. Again, since I don't regulate my temperature well, I always plan for all sorts of environments. Even though we were traveling to Texas in July, that didn't mean that I only packed shorts and t-shirts. I also had pants, sweats, sweaters, and long sleeves. Yes, it seems like overkill, but I know what it's like to be stranded on top of a mountain in Costa Rica in a 50 degree rainstorm in only shorts and a t-shirt (story for another post =P), so I'm an overpacker now.
I could go on, but those are the major considerations I had for this trip. But preparation doesn't stop with packing!

A few days before traveling, I called the airline to make sure they were aware that I was traveling with a service dog. Even though I made sure to note it when I booked our tickets, I always want to confirm when it gets closer. I also typically call TSA Cares just to be sure nothing has changed with the screening process.

We always have to allow extra time to go through security. I take a LONG time, especially if it's a busier time. Because I run my feeds during the day, I am usually already hooked up by the time we get to security. This means that I cannot go through the scanners. I also have a lot of liquid in greater than 3 oz quantities due to my medications and formula plus syringes, scissors (yes, I carried scissors on the plane), epi pens, my nebulizer, and other miscellaneous medical can imagine that it takes a while...especially since apparently that have to individually scan every. single. item. That includes not only my boxes of formula but also every gauze pad and alcohol swab...Add in a service dog and you've got yourself an extra 30-45 minutes to make sure to plan for before your flight.

One thing to be aware of if you are preparing for a trip and will be bringing similar supplies is how you pack your bags. While you do get an extra bag for your medical supplies, know what can and cannot go through the scanners. My doctors have recommended that my medications do not go through the scanner. This means that when I get to the place where you take off your shoes and empty your pockets into the bins, I literally have to unpack my medical bag. The things that can go through the scanner get placed in bins and go through. The things that cannot also go in bins for me to carry around and the bag itself goes through. Then after all the screening is done, I get to play real-life Tetris and try to get everything to fit back into my bag...

Once we get to the gait, I talk to the person at the desk to request pre-boarding. This allows Nick and me to board first so we can sit in the bulkhead seats (flying Southwest at least, other airlines you will need to call after you book to request those seats). Since we have Leni with us, the bulkhead seats give her a bit more floor space. Boarding early also gives me a few minutes to be able to get situated. Because the Xolair injections are slightly immunosuppressive, we need to be intentional about avoiding me getting exposed to things. I use antibacterial wipes to clean the seats and window and put on my mask (actually, I usually put this on before entering the airport). I also start my pre-treatment medications at this point. Since we board first, there is usually about 30 minutes after we board before take off which is about the amount of time I need for my meds to kick in. Then we just sit back, relax, and wait for the tremors to start during take off. Just kidding! Not really...

On this trip (and really on any trip), the preparation and planning isn't over once we land. Traveling with mast cell disease is always a risk/benefit consideration...good thing I grew up with a mom who worked in risk analysis for years! Seriously, though, whenever I choose to do one activity, we have to consider what else I may not be able to do.

For example, when we were in Austin, we knew that the heat would be a huge issue for me. This meant that outdoor activities after about 9 am would be out...except it turned out that just walking to and from the parking lot became an outdoor activity in 105 degrees...We also knew going in that I would not be able to do everything I wanted, and that we would have to prioritize the activities that I did do. This meant that when I wasn't feeling great Friday night, we decided that I would need to miss the rehearsal dinner. That was disappointing, but because I allowed my body the chance to rest and recover a bit, I was able to make it to the actual wedding reception the following evening.

These are just a couple of examples from this trip of the things we have to take into consideration when traveling with mast cell disease. No trip is ever the same, but regardless of the destination there are always things we have to keep in mind beyond just normal packing and going. I grew up traveling with my family and love the memories I have from those trips. Traveling now may be more complicated, but I am so glad to have family willing to do what they can to help me travel and continue creating great memories!

So that's pretty much how we travel with mast cell disease and a service dog! Is it easy? Not really. Does it allow us to travel and do things we might not be able to do otherwise? YES! And that is what makes it worth it. I can have mast cell reactions at home sitting in bed or on a plane on the way to Texas. While we wish I didn't have them at all, the reality is that if we wait for me to be "healthy" we might not do anything. We take calculated risks and make sure we have done everything possible to keep me safe and that everything we can control goes smoothly. Traveling with mast cell disease (or any chronic illness) may not ever be easy, but with some careful planning and preparation it is by no means impossible!

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