It's my 30th anniversary, and my parents' 50th anniversary, and we're going on a cruise to Alaska. Finally!
When I say "we" I mean my parents, my hubs and both our kids with their new spouses, and my brother and his family (which includes 3 kids under 8 - one autistic and mentally challenged). To make the trip easier on my brother, my parents chose a cruise specifically for families of autistic kids.
Our situation is unique, and this brings forth some unique things to have to deal with in the planning and execution of such a trip.
- I am putting together a current list of my medical history - medications, surgical and accident history, allergies, medication sensitivities, physician information etc. I have some strange and complex issues going on and it's vital that I have this information with me at all times in case something goes wrong.
- I am extremely light sensitive. My Migraines make living without incandescent lighting, or going out doors without my special sunglasses, miserable. We're going to be there during the *midnight sun* so I'm trying my best to plan for the trip by making sure I have ALL my sunglasses with me - just in case.
- My autoimmune issues mean that UV rays increase my antibody production, which attacks the organs and tissues in my body and causes a flare of disease that makes me very sick. As a result of this, I said I could only go if I had a cabin that at least had a window, as it is likely I'll be spending the bulk of my time there and at least want to be able to see the environment around us. It's not a perfect solution, but hopefully it will make me feel included and allow me to feel like I'm actually in Alaska and not just along for the ride. The noise I'm pretty sure I'm going to be exposed to with the sheer number of kids on board, is also an issue that I'm hoping will be made easier with our cabin.
- I am working with my headache specialist to be sure that I am well-equipped with a written rescue plan if I'm caught off guard while on the boat. Cruise ships are not known for having fabulous medical services, and I could be in serious trouble if my medications fail me. I don't know yet what all this will entail, but I want to have a mag IV setup as well as injectable rescue meds. Going to the ER in this case could potentially mean a helicopter ride to the local hospital and the loss of the trip as well as finding a way back home again. I need to be as prepared as I can.
- I have been working for the last 7 months to plan ahead for maximizing my preventive therapies to maximize the time I'll be able to participate in activities. Things didn't exactly work in my favor where this is concerned - I basically am starting from scratch on my Botox right now - but it's the best we can do. I'm all about optimization right now, so no sense crying over spilled milk.
- We're planning our excursions this weekend. It's vitally important to me that my family not be held back because of my chronic illness, so I kind of forced them to get together and sign up for the trips they really want to take. I haven't signed up for anything yet, because I really don't know what I can do at this point, and I may end up having to spend a good deal of the shore time in my room to avoid the sun. This again isn't ideal, but crying about not getting to do the things I've dreamed about for 4 decades is really not helpful. (I admit, I've done my fair share the last week I'm afraid)
- We're planning how to pack all my medical supplies and equipment so that I don't have another run-in with airline staff over my need to have my things on board with me vs in checked baggage. It's going to take cooperation between all of us to make it happen safely, but thankfully my family knows how important this is and I think we'll be okay.
- We are taking a larger plane to get to the port in Seattle. This will help stack the deck in my favor that there will be fewer problems getting my medical supplies on board, having the room to stow them and having more restroom choices should I need to make an emergency run for the border.
- I'm trying to concentrate on the things I'll be able to do while on the trip, instead of those things I'll be sitting on the sidelines for, or missing altogether. I just CAN'T get caught up with being sad about what I want and need to make peace with being happy with those I can do. This is a daily struggle at this point. Sometimes, even moment to moment. Those of us with chronic illness know full well that this happens though, and often this is how we get through each day of our lives.
This post is my response to the July 2013 Headache and Migraine Disease Blog Carnival.