Thursday, January 3, 2008

Living Well With Chronic Illness

Well, I'm hoping I haven't bitten off more than I can chew.

Back in October or so, I saw an article in The Oregonian about a Stanford University-developed program being offered around Oregon called Living Well with Chronic Illness. It sounded interesting and had a bunch of quotes from participants who said the six-week class really helped them become more functional despite chronic pain and other debilitating illnesses. (I'd link to the Oregonian's article, but they're only online for free for two weeks and then you have to pay to access them.)

Either I didn't realize the class was 2.5 hours per session, or I probably just assumed I'd be feeling better by January. In fact, I remember wondering if I'd cancel because I was all better by the time it started.

Of course, that was a pipe dream and I'm not anywhere close to all better.

If I get nothing else out of it, it's nice to be around a group of people who have similar issues to mine, even if their chronic illness is very different than mine. Everyone in the room nodded or verbally agreed when I said one of the difficulties I've found is not knowing where my limits are until I hit the brick wall that says I went too far and overdid things. That's something most healthy people I've spoken to don't entirely understand.

But oh, am I tired. Just the length of the class was difficult. I get exhausted after about an hour with a single visitor, and faster when I'm around groups. And 2.5 hours was just really, really, really long.


Next week, looks to be very challenging because I overscheduled myself. I'm going to have to cancel at least two appointments, I think.

Tuesday, I see the new rheumatologist. The appointment is at 9 a.m. in NE PDX, and I'm dreading having to be out in the trailing end of rush hour. I just never know how much time to plan for being on I-84.

Wednesday, I have my acupuncture appointment.

Thursday, I scheduled a dental appointment (for a filling) before I got the reminder call about the class, which meets that afternoon. There's no way I can do both, so I'm going to have to postpone the dental appointment.

Friday, I see my internist. I think I'm going to call and see if she has any availability the following week. It's not really an urgent requirement to see her. Mostly, I need to follow up on the visit to the rheumatologist and also get a new prescription for pain meds. The level of narcotic I take requires a paper prescription each time -- no calling in for refills and they can't even fax over a prescription for me. They often mail them to me, but I've had one get lost completely and never show up and another than took 8 days to arrive when in-town mail usually arrives the next day. So I like to pick them up in person when I can time my appointments, even though it's a hassle to drive downtown just to get it.


So, a couple people commented on my last post in email and here on the blog. I neglected to mention one of the details of the Blog365 challenge, and that was that you need to blog daily except for Leap Year Day (Feb. 29). That's why it's Blog365 and not Blog366.


joan said...

Here's your chance to practice! Think about what it is you need to make that 2.5 hour class less difficult. Is there something they can do to be helpful to you? (a chair you can put your feet up in?) Try to be as tangible as you can in your thoughts.

Why? Because if a "living well with chronic illness" class can't accommodate you, then the class itself has a problem!

And a curious kitten question: Were there other people in the class with a similar issue as yours?

This is a great pro-active step - and SHOULD be a safe place to discover what will help you be successful with long visits. Make them work! :)

Aviva said...

Wow. What a good point. Thanks, Joan! The leaders of the class will be calling sometime during this week, so I'll have a chance to discuss my issues with them then. Meanwhile, I guess I should start brainstorming.

Re your curious kitten question (love that phrase, never heard it before :), there were people there with a variety of types of chronic illness, everyone with something different but with some overlap and similarities. There was one woman with lupus, another with fibromyalgia, both of whom almost certainly have very similar issues to mine.

I've felt very good about some of the online friends I've made who deal with similar symptoms to mine, but it was really kind of nice to be in a room full of people who, even if their illness was different, could identify with many of the issues I face surrounding my illness.

It's also for caregivers, too. There was a nursing prof from OHSU there (and she'll have five students joining us beginning next week) and someone else who said she was in the healthcare industry. Interestingly, they ended up sitting next to each other even though they didn't seem to know each other. :) Funny how things like that happen.

~RaenWa~ said...

I am glad you found a group that you can be around people who know what its like to live with chronic Illness I hope you find people you feel comfortable around and make you feel at ease