Yesterday was my birthday and a tangent into reflection. All day, I updated my Facebook status with little snippets of my life so far that covered the spectrum from my twenties and “healthy” to my middle-age and “not-as-healthy”. As I tripped down memory lane, I realized that one of my habits is to keep a ton of information in my head. That would be fine if I:
a) didn’t have lupus and all the emotional upheaval that the lack of control brings
b) exercised regularly so that the blood keeps flowing to my brain
c) didn’t have expert-level skills in responding to chaos, and
d) lived completely alone on a tropical island somewhere
Last Monday was the final session of the Living Well with Chronic Illness workshop I’ve been attending (See Working on Facing Change) . We discussed dealing with our illnesses in the futures building on all of the topics we covered ranging from our emotions to being ill to specific actions we can do to make living with illness better. This workshop definitely gave me a better perspective on some basic topics ranging from effective information sharing (communication) to evaluating my situation and goals (action planning). During this six-week review, I realized that I am completely unprepared (as is my family) if something were to suddenly happen to me (organizing medical, healthy living and emergency information).
Some of the tasks that I have added to my list of weekly action plans include learning more about:
Organ Donation registration , and
DNR’s (Do Not Resuscitate orders)
I’m also in the process of creating or seeking templates for the following:
An Emergency Health Information card to carry with me (the format doesn’t matter as much as the information)
A Health Team Roster (Contact List) to share with family and friends including roles
A Medical/Health Reference binder for medications, dosages, allergies, and specific illness-related topics (such as sun and fluorescent lighting info for flare management, minimizing dampness or cold temperatures to minimize raynaud’s, tracking symptoms and diet) to bring to my appointments
A Self-care wish list (things that help me feel better, laugh or generally make me happy if I can’t communicate – either because of health or if I’m just not up to relying on others’ help* )
*Ideally, the items on this sheet will offer my loved ones ideas on how they can help when they see me hurt
Sounds like a lot of work – and it is. However, as I struggle to maintain my independence and not burden my friends or family, I need to insure that independence by taking the time to define my life now (and in the future) -it is my responsibility. Another flexed muscle for healthier self-determination.
What would you recommend? I know there are a lot of you out there writing about the importance of this stuff, too. Please comment here listing any local and national/international resources, recommend websites, offer up your blog post links, and words of wisdom so that we can – as a community – offer these important reminders to others living with, or even those living without, illness.
I’m going to do a shout out to a few blogging buddies asking them to add their two cents and I encourage you readers to do the same with your friends. We need to do what we can to take care of ourselves and our friends – simply by initiating the conversation.
Hey, Leslie!
Hey, Sara!
Hey, Julia!
One last thing, here is a link that I came across on ABC news the other day that covers some of the key points the local living well workshops do – good advice and also a great kick in the tail to help me get busy on these necessary homework assignments.
Looking forward to hearing – and learning - from you!
