Where have you been girl?
As this post goes up, I’m in a chair with an IV getting my second Rituxan IV infusion. It’s hard to write about myself, but I really need to keep you informed about what’s going on. Couldn’t someone else report about it for me? None of my kids were willing to take the job.
The Rituxan infusion is part of a clinical trial. I’ve not been sure how much I can tell you yet. Anyway, it won’t be the same as a normal infusion this time. It does worry me, but I’ve made my decision.
That’s the same way I felt last week when I walked onto the stage at the ePatient Connections (ePatCon) conference. I’ve already decided to do this; now I’ve just got to do it. I’ve spoken before, even to a group that large. But not under bright lights with a microphone wire through my clothes. Or with video cameras. And certainly not about myself. It’s even harder to talk about yourself on a stage than to write about yourself in a blog. For me, anyway.
Speaking at the ePatCon conference was a great opportunity to reach outside our community to share the RA patient experience. I was so grateful for the opportunity. Hopefully many will see the video and it will reach even farther.
I’m already multitasking! I’m living with RA!
Traveling with RA as a companion is hard we know. And I learned last year on my first trip that it’s also very hard to be around healthy people all day who have no idea how sick or disabled you are. They can’t see anything so they don’t offer any assistance, ETC.
Another thing I learned back then was that I couldn’t blog -n- travel. Apparently, I have to travel and then blog. Traveling or speaking is so physically difficult that nothing else can be added. Meds, food, and rest are not negotiable. At the end of the day, the bed beckons – and not as a place to sit typing!
There is a lot of time and strength required to do things that everyone else takes for granted like getting dressed and walking up stairs or sitting with knees bent. I was pretty disappointed in myself at first. But I had to realize that living with RA, I’m already multitasking. When I get time, I’m going to make some t-shirts with that!
Keep up with my living with RA multitasking! Here’s how!
In my laptop, I’ve got several blogs that I half finished or almost finished over the last month. Projects had to be set aside in order to prepare and attend the ePatCon conference and then to recover. I’ve also had several health issues going on – don’t most of us? So, apparently I’m too busy to keep up with myself lately.
Someday, maybe I’ll get it together enough to do a blog or a newsletter in the midst of times like this, but until then there is a way to keep up with me at least somewhat. You can follow my posts on Twitter. Since there are only 140 characters allowed and I can do it from my phone, I can usually muster up what’s needed to make some kind of post – even if it’s just to post a photo of me meeting a famous author like ePatient Dave!
- RA, Blogging, and Mary Poppins
- Traveling to a WEGO Health Panel for Health Activists
- Traveling with Chronic Illness/RA Part 2: 20 Helpful Tips
- Traveling with Chronic Illness / RA, part 1