Cake By the Ocean

Hotel Resort in DR on Honeymoon 2009

A vacation is what you take when you can no longer take what you've been taking.

-Earl WilsonI am in desperate need of some time off, but only because NOW (that I'm finally feeling good) is the best time for it. I love everything that is happening in my life and I love staying busy, the work I do doesn't feel like work, but...now that I might actually ENJOY a vacation is precisely when I should take one. For too many years Lupe and I took vacations to try and get away from all the physical pain, pills, and stress of dealing with my illness...man what an incredibly stupid idea. I was miserable for 95% of the time on 100% of all those trips. I was either in too much pain or too tired to do anything fun and so it was being sick just in an expensive hotel in a different city. While we would try to do a few things, it usually amounted to one mini adventure and one new restaurant a day. Followed by room service, SVU marathons and lots of sleep. Don't get me wrong, I will treasure those memories because at least I got to spend them with the one I love and he was always very accommodating and didn't care what we ended up doing...but sheesh, it really ended up being more trouble than it was worth because of all the prep work that goes into making sure I have what I need while on vacay. (We learned the hard way to never forget things like pain meds, hand warmers, blood pressure cuff, wrist braces etc.)

Vacationing with a chronic illness is a process. We have to mentally prepare ourselves and our bodies for the exhaustion that comes with traveling. Whether that's sitting in a car/bus or train for extended

Cat Scan of brain on Honeymoon (Thunderclap Headache)

periods of time, walking extensive distances across international airports lugging baggage, or dealing with climate changes, food sensitivities and the fact that you will not be sleeping in your own bed for a period of time. You have to make adjustments, you have to hope for the best and prepare for the worst. Lupe and I (jokingly at first, but now very seriously) always pay attention to and/or seek out the nearest emergency room or urgent care clinic to wherever we're staying and I always make sure we're no more than a mile away from a Walgreens or CVS...just in case. Some people like to site see, I point out and get excited about pharmacies and med centers.

But, now that I finally have the energy to do things I want to take a real vacation where we can travel and do things and not be confined to a hotel bed unless we WANT to be. I will still take precautions of course but I really feel like this time around I'll be able to truly enjoy myself and not live in fear of "what if I flare while away from home?" I think I spent too many years using vacations as a way to try and get out of my head and out of my body, and while sometimes it worked, most of the times it just left me feeling more hopeless because nothing DID get better OR easier while away, it just reinforced what I already knew to be true: You are broken and you cannot escape this, you are not normal, nothing is ever going to be easy, not even a vacation. In the end it was less of a vacation and more of a "come to Jesus" moment each and every time.

Trip to Miami 2012

And it's true, you can't escape your illness, it lives inside you, and that was something I had to learn the hard way. It doesn't mean that we can't enjoy life or take vacations or try to relax, not at all, I mean that's exactly why we should! But we shouldn't expect our problems and our physical pain to disappear simply because we changed geographic locations. I guess you could say I was naive..or maybe just hopeful. Either way, what I learned about vacationing while ill is...don't vacation while ill. Take a bath or get a massage. It's easier. It's cheaper. And it's a lot less exhausting. OR take a vacation where all you're expected to do is: take a bath, or get a message, or sleep. - Do this in a city where there's nothing to do or see and it's really ugly so you don't feel guilty about not leaving the hotel room or spa.

So, now that I'm approaching some sense of normal (sshhh, don't say that too loudly)...I'd love to

D.C. Winter 2010

have some cake by the ocean (sounds like a lot of sand in my teeth, but I love cake and the ocean so), or maybe a baguette near a river, or wine by a vineyard..just some place where I can begin to form new memories of travel experiences that are fulfilling and enjoyable rather than tiring and troubling.

Suggestions??