Butterfly on the Go

Many different species of butterfly migrate, traveling long distances on fragile wings in journeys that cover thousands of miles.

I am on my own annual migration – vacation. Each year I travel home for Christmas and/or a couple weeks of summer. This year was a grand trip that will mean several important events – anniversaries, birthdays, holidays, and graduations. I’m documenting what it is like to travel and vacation with a chronic illness. Already I am deeply envious of those butterflies, who seem to glide so gracefully through the air on their journeys … but even they face the odd storm.

The first challenge of The Vacation was setting dates. On top of the normal summer work/study that is a graduate student’s life, I had to also work around a rigorous schedule of doctor’s appointments, testing, and surgery. I tried pick dates when I wouldn’t be as sick [“you’ll be all better by then!” relatives sometimes insisted, and I would do my best not to try to explain the meaning of “chronic” and the difference between “treatment” and “cure” again.] I jammed as much medical stuff as I could into the weeks before The Vacation. And I paid out-of-pocket for medication refills that my insurance wouldn’t cover because it would run out before the end of the trip.

The next challenge was packing. I had enough medical paraphernalia to fill an entire carry-on and then some. My sister and I were going to travel together. We split a checked bag and I packed a few things into the extra-large duffel, hoping desperately it would make it through. Important medications went with me. My carry-on was definitely over the size limits, but fortunately no one made a point of it. I bought a portable sharps disposal container (it looks rather like a very very large crayon).

It has been working great. I had medications that needed to be kept cool, or better yet frozen. I purchased a medication cooler case online. I had no trouble making it through security with that or the medications. I told every single TSA agent I met that I had medical implants and a bag fully loaded with medical gear, and they could inspect it any way they liked! In the end my pack simply went on the conveyor belt through the machines, and a few whispered conversations later, I was just handed my bag at the end of the line. They were helpful and respectful the entire time. The hardest part was the endless standing in lines – to drop off checked baggage, use the bathroom, or get through security. I have POTS/VVS, and one of the challenges of that condition is standing for long periods of time. My heart races, my blood pools in my extremities, and I feel absolutely wretched. If it takes too long, I’m in danger of passing out. But I did NOT want a wheelchair! Instead I wore compression socks and imitated the children in the airport… I sat on my luggage or knelt on the ground when I needed a break. There was the occasion odd look but no comments, and I count it as a success.

Once through security, we learned our plane was broken and had to be fixed. It took so long they had to get new pilots!  By that point we’d spent so long at the airport that I’d needed to eat twice and take medications. The employees at Starbucks gave me hot water to mix medications in for free. No one looked at me oddly while I took pills. There was a sharps disposal unit on the wall of the women’s bathroom. And Smashburger has a simply AMAZING allergy app to help you find safe foods. In the end we raced a thunderstorm off the runway and into clear skies. It was a very positive experience even with the delay.

The plane was another story. It was cramped and uncomfortable. There wasn’t anything that I, with my food allergies, could eat. Even though the cabin was felt icy to me, my medications were thawing by this point, the little gel packs giving up after a lengthy battle against entropy. I asked for ice from the stewardesses and, after some discussion, they filled an air-sickness bag full of ice. My sister, capable and fierce travel companion that she is, helped me fill a sandwich bag with ice for the interior of medication case, then stuff the entire case into the barf bag of ice and wrap that in a jacket. It stayed cold the entire flight. While it might have been a little messy, we made it! And everyone was so helpful.

Finally, we picked up our luggage and our ride picked us up. We had to break the four-hour long drive home into legs, but after only 14 hours of travel, we made it to our home away from home.

Lessons learned: have food picked out at the airport ahead of time. However much food you pack with you … times by 1.5. I wasn’t the only one going through the lines with medical supplies, by any means, and I noticed the TSA seemed to handle it much easier if you declared it frequently and politely. Those who didn’t warn anyone took longer going through the checkpoints. I’m also going to see if I can’t find some tiny instant-ice packs. Supposedly, if they are deemed “medically necessary” there’s a chance they’ll be allowed through. On the homebound leg of this trip, I’ll traveling for 5-6 hours before even getting into airport security, and the first packs will already be…well, slush might actually be a tad too optimistic.

 

 

 

 

Confessions of a (chronically ill) graduate student

Just when I think I’ve got medication schedules down and have a handle on things, I forget that Med 1 has to be an hour before eating, Med 2 a half an hour before, and Meds 3-infinity have to be taken with food.

Ramifications: I can’t just grab a quick bit on my way out the door to a concert. Missed concert so I could eat, take meds, and function another day. Simple, necessary, and devastating self-care.

Confessions of a (chronically ill) graduate student

A chronically ill graduate student’s dilemma: protect my spot at the microfilm reader and continue to enjoy accidentally unspooling the reels, or go pick up medicine at the pharmacy and risk losing the machine to some other desperate graduate student in search of an idle 8 hours of frustration??

Hmm.

Decisions, decisions.

Water A Flower Day

Yes, that’s right! Today is Water a Flower Day.

In the physical world, I’m all out of flowers to water. My orchids are stubbornly remaining barren, and the garden boxes are similarly devoid of blossoms. Instead, I have pictures of the beautiful flowers at a local arboretum a friend and I visited recently, armed with suddenly flimsy-feeling cameras against the hissing guards of the garden.

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Happy Water a Flower Day!!