This past weekend, we celebrated our country’s independence here in the US. In the midst of my celebrating, I began my preparations to go on vacation with my family and really struggled to see this trip as a sign of my continued independence. This trip is a big deal for me in another way, too, because I am going with my mom and two daughters – three generations from the same limb on the family tree. On some days, we don’t all feel like we’re even from the same forest, let alone the same tree. I am hoping that this trip will help us become more acquainted with some of our roots to create a stronger footing with each other.
Ideally, my hopes were to come up with a post about traveling with chronic illness or even put up some type of carnival-style post naming bloggers who are out there kicking up some dust of their own traveling.
Realistically, life doesn’t seem to work that way for me lately. If it isn’t the internet or computer giving me grief, it’s all of those loose ends smacking me in the face while the winds of indecision and panic swirl around me in my efforts to organize preparations.
Since it is now 2:22 am and I have to leave for the airport by 9:30 am, I’m thinking I am going to let my personal expectations slip a little - afterall, I am practically on vacation. I want to mention a great post on traveling preparation that a friend, Jo-Anne posted “Rheumatoid Arthritis: 10 Tips for Travel” on her blog Living Rheum.com. It covers some great stuff and more thoroughly than I would have, certainly. She writes from living with R.A., but all easily applies to us with lupus and other related illnesses.
A few other good bloggers have mentioned traveling, too, such as:
Jocelyn Tomkinson, as featured on ChronicBabe.com “DisAdventure! Advice for World Travelers” – a great post particularly for the younger chronic illness (CI) set.
Barbara Kivowitz offers a nice , PNW-inspired post entitled My-Own-Private Idaho about how her decision to go river rafting with her husband gave her a true vacation from her pain and re-introduce her self with adventure. This is a great post to learn more about the relationships with others (e.g. spouses and partners) and working on working it out together.
About.com hosts Karen Lee Richards with her article “Traveling with a Disability or Chronic Illness” that covers some good basics to also keep in mind.
Jeanne authors the blog Chronic Healing and offers a post entitle “Fun For Healing” who doesn’t board the plane for any particular destination, but to simply encourage herself to become distracted with possibilities.
To finish this up, I had a couple of flashes of insight that startled me and I want to put out there – maybe to induce some dialogue when I get back in a couple of weeks:
1. I can’t believe that I not only remembered all my meds, chopped them up and counted them out for the number of days…I actually wrote them down on a sticky note and put it into my wallet stating “Ich habe Lupus Nephritis – 1500 mg Cellcept, 20 mg Lisinopril (Generic for Accupril)” along with my doctors name, location and phone number. Dang – I impress mahself.
2. I understand now that I have to shift my perspectives on traveling. It isn’t as vagabond as it used to be and realizing that actually made me a little sad today. Packing made me feel old and boring.
Do I have enough layers for the cold or sudden hot flash? Do I really need to bring gloves even though the rain is coming down and I don’t want the Raynaud’s to get in the way? Jewelry – is it time to think that a medical alert bracelet really does say it all? Comfortable and practical shoes – wtf?!
The spontaneity of journeys do get muted when our lives require constant awareness, but that doesn’t mean not to step on that trail. I am not going on this trip to prove that I am still that 20-something who could withstand most anything – I’m going because I still can. It may be different, but the road is still in my potentially-clotting blood needing to flow as free as possible. Gotta’ heed the call.
Okay – seriously…sleep and hydration is pretty important – as this latest article (posted on Reuters and written by Amy Norton) addresses, and gives me something more to worry about.
Thanks, Yahoo News…your timing in impeccable…
I’ll be back in a couple of weeks – please visit these links and all of the great people listed on our Resources page. If you don’t find yourself there, send in a little intro here in the comments. If you know of other greats out there deserving some recognition, please list them as well. If you are inspired to write about your own travels and adventures, we would love to post them. If we can’t always get out into this world, then there is something magical in bringing that world to each other and encourage the adventures.
Be well and laugh often!
Maria
