There are two reasons why I rally. The first is for the people that I love. The second is so that I can look myself in the mirror and not be consumed with shame.
Shame is an awfully good motivator. Not letting fear come between you and who you need to be —that’s how things get done.
So it was for both of those reasons that a few months back I booked my flight and AirBNB for Seattle. My mom, step-dad, R.J and I were all flying across the country to celebrate Thanksgiving and my sister’s engagement.
If you’ve been following along you’ll know that traveling is an especially difficult process for me. I used to just be claustrophobic on planes—but as my disease has progressed, the literal act of dragging medication, infusion supplies, and handling the long hours of travel have only made it less enticing.
Not to mention I’m still recovering from a long hospital stay and have a temporary PICC line since my port couldn’t be replaced in time before I left for the week. I wasn’t in the greatest shape for a seven hour flight from Fort Lauderdale to Sea-Tac. But not hell, high water, wild horses, or blood clots in my tubing could keep me from this trip—because this was an even more special trip than most of my sister’s friends and soon-to-be new family were aware of.
After packing a tremendous suitcase full of infusion supplies, consulting with my doctor about how to balance my symptoms at a high altitude and picking several choice outfits from some special occasions we’d be attending in town, my Mom and I headed off to the airport on Tuesday night.
We flew Alaska Airlines, and even though I’d spoken with a rep on the phone twice to confirm that their extra-legroom seats would be able to accommodate my IV pole should I need to use it—it totally didn’t. Like, at all. In situations such as this…well…its good to be as drugged out as I was. Because this could have become a moment of panic, but instead I just slinked into my seat, turned on my Kindle Fire and started watching movies.
I’m not going to lie here. I think I took something like 3 Valium, 1 Klonopin, and a half of a Percocet. By the time we got off the SEVEN HOUR flight (delays) I was feeling no pain. Not even when my mom accidentally dropped her suitcase on me. When we got to baggage claim I stopped by a bathroom to pee, came out, and got completely lost trying to find my way back to her and our luggage. My sister, Joey, and our family-friend who would be staying with us, Lisa, all came to pick us up at the airport. I was giddy by then, and when my sister told me she’d picked up sushi and soup for us as a late dinner—I was just plain…well, let’s stick with the word giddy.
My first impression of Seattle at night was that it was a still a colorful city. Lots of bright lights, people walking, we passed by the bay with the giant ferris wheel—which just looking at it almost gave me a panic attack.
Over the next few days I’d realize there was a lot of things about Seattle that wouldn’t necessarily be up my alley. These included: cold, rain, hills, stairs, and public transportation.
Conquering all of these elements with my disease in tow was difficult. However, Seattle is ahead of the curve on some things that made managing my disease a lot easier. These included: Amazon NOW food delivery, Uber drivers always 2 minutes away, markets with shops close together that meant you didn’t have to walk far once you were in the shopping area, and really, really fresh tasting tap water. (Sorry, had to throw that one in there since Deerfield/Boca tap water is basically antifreeze.)
We stayed at our first AirBnB. It was, in a word, sick. In a good way. I don’t remember much from that first night except for falling into the exceptionally comfortable bed and being out like a light.
When I woke up, I think it was 6AM Seattle time and my mom and I took a walk around the neighborhood to get some pastries. Since R.J and Alan weren’t flying in until later that night, my sister picked three of us up to take a quick trip to Pike Place to find some supplies for that week.
Even though I was still tired (and probably still a little drugged) from the night before, I rallied and we walked around the market for as long as I could. Then my sister and I drove back to her apartment so I could finally meet her dog, Le Geux!
I fell a little in love.
My mom and Lisa were still shopping so that gave me some time to catch a quick nap at my sister’s apartment. I think it was just what I needed to recharge me for the rest of the day, which was going to be long.
Soon they arrived, along with Joey, and we each took a few trips down her icy outdoor staircase, our hands full of boxes, to load up their car with supplies for their party. Then it was back to our Air BnB, unloading the boxes, and then we split up— My mom and sister to go to another grocery store for more supplies—and Joey, myself and Lisa to visit a dispensary.
That was something I really wanted to try while I was there. Well, I guess it’s not a huge secret—but of course I’ve tried marijuana in the past to see if it would provide any relief for my symptoms. Unfortunately I didn’t have much luck, but I figured in Seattle that there might be more specific strands and products that would be more fully dedicated to pain/nausea relief. After pulling out a whopping $100 from an ATM we went into a shop and I was able to ask all my questions. I ended up trying two sublingual sprays and a pack of 10mcg candies.
After toying with them throughout the trip, I think my conclusion was that they really didn’t make much difference. Or maybe I just tried too low of a dosage. Or maybe I was just in too much pain for anything short of an epidural to make a difference at that point. I would liked to have had a doctor or a pharmacist who was actually medically knowledgeable about marijuana to have guided me—but well, we’re only America, we’re still getting there.
That night R.J and Alan arrived as we were starting to prepare some early dishes for our Thanksgiving dinner. Even though I’d been on my feet most of the day, I was in a really good mood—I honestly didn’t think I’d get a chance to do anything on that second day. The fact that I’d felt well enough to do so much was surprising.
And on Thursday—we rested. Well, that’s a lie. We cooked all day. And R.J went for a run in the rain and came to the conclusion that we were not moving to Seattle any time soon.
We had my sister’s soon-to-be sister-in-law, mother-in-law(s), and father-in-law over to celebrate with us. It was the best Thanksgiving I’ve had in years. I truly felt like I had a lot to be grateful for this year. Just the fact that I’d made it on this trap was still warping my brain with gratitude, the idea that I was starting to enjoy it too was more than I’d hoped for.
Then it did all start to catch up with me. At some point after dinner my head started to throb. Then absolutely pound. I excused myself and went upstairs to lay in the dark. R.J came in a few moments later to check on me.
“I want to take a bath,”I said.
“There are people downstairs still.”
“I know,” I said. “I’m not sure how much I care right now.”
After a half an hour of waiting for my medication to kick in, I did end up trying to take a short bath—which proved hard as the shower in the Air BnB didn’t have a hand-held and I couldn’t get the bandage around my PICC line wet.
But after that I took some deep breaths, put my clothes back on, pushed on a pair of sunglasses and went back downstairs.
Although most of the guests had left, there were still a few left to spend some time with. I put an ice pack on my neck and started to feel a bit better.
When I was ready for bed I took a full pain pill, hoping to get RIGHT to sleep before I could do any more damage. This turned out to be a terrible mistake as I woke up an hour later feeling deranged, over-medicated and so nauseated that my eyes were watering before I even opened them.
The house was old, and the wood floors were squeaky. Unfortunately, this meant I kept everyone up as I traipsed back and forth from the bedroom to the bathroom trying to balance out my medication in-between dry heaving and trying to get my PICC line to work.
At some point the syringe just wouldn’t inject. I thought the line was kinked, but that wasn’t it. I ended up having to un-bandage the whole thing to get a good look and what I found wasn’t pretty.
The catheter was…how do I put this into visually accurate words?
The catheter was pointing backwards.
I had to grit my teeth and manually push it all the way around.
After that I was able to inject a healthy dose of zofran and then sipped a bottle of coke until I thought I could lay down again.
The next morning, R.J and the rest of the team went to the location of the engagement party to help set things up. My sister used to live in the maid’s quarters of the Swedish Embassy in Capitol Hill. It is legit the most beautiful place I’ve ever seen. The house is stunning, wood, a hundred years old, huge—and even though she moved out long ago, she remained friends with the landlord, a lawyer named Byron, who allowed her to have the event there for free.
I spent the day at the Air BnB house cleaning and setting up for my sister’s bachelorette party. I had been putting together this surprise for months—a 90’s theme bash with just a few friends. I didn’t want to go with the general genitalia themed party and no one wanted to get wasted the night before the party. I wanted something we could still have fun with though. So I got slap bracelets and sticky-hands, 50 cent machine capsules with prizes, 90’s theme photo booth signs, mood rings and mountains worth of 90’s themed food and candy. We played the toilet paper wedding dress game, trivia, and what’s in your purse bingo. I had prizes (like a spice girls banner) to hand out to the winners. It was a good time.
The next day was the party…except that….
Surprise! It wasn’t an engagement party—it was the actual wedding! Joey and Sammy decided they wanted to get it done all at once and as a surprise to eliminate some of the planning stress. It also made traveling a lot easier for the family since we only had to come once.
The ceremony was so, so beautiful. I cried buckets. My sister looked like a goddess with her hair all done up and her bohemian wedding dress.
I know I was exhausted by the end of the day because I’d been walking around in heels cleaning up—but I know we were all exhausted on our own levels. It was worth every second of stress and nausea to be there.
There are some things you can’t do over Skype or read about online. You have to go out there and experience them. I know a lot of things are out of my reach when I’m laid up in bed with a flare. I miss events, trips, and moments I can’t ever get back. But I know that as often as I can, I’ll rally as hard as I can to be there for the people who need me to be there.
I’m happy to say that I completed a lot of my goals this year. I did a lot of traveling—my honeymoon, the Dysautonomia International Conference, Seattle. And traveling is getting easier every time I step on a plane. In fact, the five our flight back felt incredibly short and only took me like 3 Valiums to get through. (I was pretty exhausted at that point in the week, so I slept through most of the waiting in the airport and the flight.)
-Only one more hurtle this year: my port surgery, which I’ll find out the date of tomorrow morning. But really, that’s not something I have to rally for. It’s just something I have to make sure I actually sleep through this time.-
What’s your tip for traveling with chronic illness?