On last year's trip to the UK I went naked. All that held my joints together and kept me barely mobile was prednisone and methotrexate, which amounted to nothing more than tic tacs in my case. I was in pain for all thirteen days, and unable to do all that I had planned. This time I will have the benefit of having had 4 Remicade infusions, the fourth being this Friday...just three days before I hop on the plane. The Remicade/methotrexate combination makes my body such a nice host for any and all opportunistic infections, and I admit I am just a bit nervous about being cooped up in a plane for 6 hours. People coughing. Sweet little tots with runny noses. The spectre of MERS. I asked my rheumy about this latest respiratory pathogen and how I should handle things, and she advised bringing along a few face masks. LOVELY. Err...not really.
What IS lovely? The fact that after two years of medication trials and failures, my body seems to be getting happy again. Not perfectly. But after the third infusion, I experienced the first real, usable energy in YEARS. Pain levels went down to a four and they've generally hovered around five and six. Sometimes seven.
I am going to see folks on my travels that are biking. Running. Being vigorous in general. And I miss that. And I will want to join them. And I will be mad when I can't. But I am committed to reaching that point again. I must remind myself, however, that I am just at the very beginning of feeling good again. My ribs and sternum are still hot with inflammation, as are nearly all my tendons and ligaments. After a few hours activity, sometimes less, my SI joints and spine announce their displeasure. If I get too cocky my right knee gives out.
Ankylosing Spondylitis (AS). "Anka What!?" Autoimmune arthritis. Chronic illness. Systemic. Affecting the entire body. Not your gram and gramp's creaky joints. It can come with a misbehaving heart, too. Arrhythmias and insufficiency. I wake each day with these things and will manage them throughout my life. They got in the way of the last trip. Now that I understand something about pacing and realistic expectations, and have finally had a positive medication response, I am looking forward to wandering with my camera and marveling at the London sights, sounds, and architecture. Walking the Cornish shore and maybe climbing some rocks.
I've generally been pretty lucky about not getting sick even though the meds have sent my immune system on a permanent vacation, but since I'm leaving nothing to chance I will be taking the good Dr.'s suggestion. If only the damn things weren't so white. And plain. Dull. I did a Google search and was surprised to find quite an array of face masks for the "fashionably conscious" and germ phobic. Tentacles, anyone? How about a set of shark teeth? Mouth grenade? I think the easy-access sushi zippered version is a joke, but.....I like it! Can't help but wonder how the reactions would differ if I strapped one of these funsters to my face rather than the standard surgical issue. Could not find such conversation pieces in my shopping trip for the last-minute essentials, however.
- Nikon with two lenses.
- Journal.
- Visitor Oyster card (thanks to friend Maundy, I won't have to wait in the long line at the airport....).
- Passport and all booking information.
- Spiral-bound London A-Z guide.
- Tissues for dry air itchies and/or movie sniffles.
- Teaberry chewing gum to pop the ears on take-off and landing.
- Raw almonds.
- Organic snack cracker mix.
- Protein bars.
- Water bottle waiting to be filled.
- Nearly 40 GBP from last trip.
- Meds
- Arnica gel to soothe my AS-ravaged achilles and any other hurtin' parts that need it
- A snack-sized box of Junior Mints, small package of Twizzlers, and a handful of Atomic Fireballs
- Burt's Bees clary sage handcream
- Lavender saffron chapstick
- A two-piece camper's plastic wine goblet that twists together.... How nice for the impromptu picnics in London parks and on Cornwall beaches...it's been to Barcelona and Greece, too!
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