Thursday, May 26, 2011

5 Things Makes A Post

One of my favorite authors often uses that title to her blog posts when she's putting together seemingly random thoughts. So in the style of "imitation is the sincerest form of flattery," I decided to take a page from Sharon Lee. :)

1. Not sure where I first found the link, but Toni Bernhard, author of How To Be Sick (which is on my to-read list), has a post on Psychology Today titled 10 Tips From 10 Years Sick that's worth a read. 

2. A grad student at Tufts University Medical School is doing a research project on patient bloggers and has a survey seeking input from such bloggers. It took me about 10 minutes to complete it, and you can be entered to win an Amazon giftcard if you choose to share your contact information at the end (it's not required if you prefer to be anonymous). 

3. I'm not feeling well this week, although I think I'm mostly over the virus I caught nearly two weeks ago. But it's nearing the end of the school year, which makes it a super busy time. We went to the kindergarten class play (Ellie was one of two Peters in Peter Rabbit.) last night, and out for ice cream afterwards, so today I feel like I'm wearing one of those lead aprons they use at dentist offices during x-rays. Makes everything take more energy and hurt. But this too shall pass. 

4. I just finished reading The Hunger Games trilogy by Suzanne Collins. And wow, was it intense. Highly recommended for those who enjoy young adult, dystopian fiction. I just started Ender's Game by Orson Scott Card, and have been reading a bunch of others this spring as well. I've discovered that I have to alternate books like those with light, frothy stuff. But that's not a hardship since I enjoy light, frothy stuff too.

5. I read an AP story today about the results of an Oregon man's suicide using a "kit" that he bought online from a 91-year-old California woman. So now there's a big fuss and both law enforcement and the Legislature are looking into what they can do to make it illegal to sell suicide kits and debating how it fits into Oregon's current assisted suicide laws. What do I wish the Powers That Be would take from this article? That the guy who killed himself had suffered for years from Chronic Fatigue Syndrome, a health condition that's more highly stigmatized than having HIV and has very little research being done despite the high numbers of people worldwide who are affected by it. (Interestingly, to me, it seems to be taken more seriously by the medical establishment in places like Great Britain than it does in the U.S.) Rather than criminalizing the selling of things that are readily available in Home Depots around the country, and spending tax dollars investigating, prosecuting and incarcerating people for doing so, how about we spend some more money on looking at what's causing CFS and whether there are any treatments that actually work.

Monday, May 23, 2011

Coming Out Of The Closet

I'm not sure why I'm finding this hard to talk about, but my application for Social Security Disability Insurance (SSDI) was approved. 

Two months ago.

I'm grateful, for my family's sake. And as my laptop was dying over the past few weeks, it was nice to know we have a little more padding in our budget again so we could replace it without trying too hard to figure out where the money should come from. 

But rather than celebrating when I got the letter from the Social Security Administration, it made me sad. The fact that someone I've never met read through my medical files and determined that yes, even without a unifying umbrella diagnosis, my symptoms add up to a disability somehow made official something I've been in denial about: This is real.

(I don't know why it hit harder that it was an SSA lawyer rather than people I've gotten to know through my blog and other Internet communities.)

When I applied for SSDI, I somehow had it in the back of my mind that by applying (which I had to in order to preserve my ability to file for it before I'd been out of the workforce too long), it would somehow guarantee that I'd be better before I worked my way through the backlog of cases waiting for hearings before an administrative law judge. (I knew I'd be denied initially because I don't have one of the clear-cut diagnoses that are automatically approved. And I was, although my claim was ultimately approved about six months before my lawyer estimated I'd be scheduled for a hearing.)

So why do I shy away from telling people that I'm on disability? I really don't know. 

I'm not embarrassed or ashamed, because I've been totally honest with my doctors and the Social Security Administration. But it doesn't feel like something to be proud of, either. 

Mostly, I guess, it's a relief. 

And I'm still hoping this isn't a forever thing. A lot of people think Social Security Disability is only for permanent disability, but the regulations say you can qualify as long as your disability has or is expected to last at least 12 months. 

So I'm hoping that either one of my doctors will figure out a treatment that allows me to be functional enough to work again, or that I somehow get better on my own. It happens. Autoimmune diseases can go into remission, sometimes for years.

Meanwhile, I felt I needed to let y'all know since I'd written about it a couple times back when I applied in 2009. (Huh. I was apparently was thinking about it enough to write about it way back in December 2007.)

Thanks for listening. :)



Saturday, May 14, 2011

The Old Chinese Curse ...

Came across an interesting article out in the blog-o-sphere that I wanted to share about "interesting patients" from a doctor's perspective. 

Check it out over at


Friday, May 13, 2011

Oops! Or, Where I've Been For The Past Month

How did a month go by without my posting? I'm not sure, exactly. 

After that last post, we went to spend a couple days visiting the inlaws, who live about a 4- to 4.5-hour-drive away from us. It's the first time I made the trek since soon after I got sick in 2007. In fact, the two are somewhat linked in my brain. I remember planning that trip figuring that it was just as easy to lay around on someone else's couch when I didn't feel good as it was at home. But it didn't turn out that way, and I always wondered if I would have ended up in the hospital when I did if we hadn't made that trip. Of course, I'm not sure avoiding that hospitalization would have made me any less sick, so it's probably a moot point.

Scott and Ellie have made several trips without me over the past four years. For the last year, I've wanted to try to make the trek with them, but I'd either flare up or something else would come up (once, the pet-sitter flaked and we couldn't leave the sick kitty without someone to come give her medicine twice a day) and I'd end up sending them without me.

So we went April 16-18, which in hindsight was a ridiculously short visit for the amount of travel time, which I found exhausting even though we timed both car rides so that I didn't have to wake up too early. It could have been a lot worse, but it was bad enough that I had Scott drop me at the hotel so I could nap while he and Ellie went and spent the evening with his parents. The next day, they went over after breakfast (and a quick trip to Wal-mart after mommy discovered she forgot to pack Ellie any underwear) while I napped. He came and got me so I could attend lunch and meet my new sister-in-law as well as see everyone else. She was just a few days post-op from a shoulder surgery, and I was determined to last as long as she did. But boy, when she went home to crash, I was definitely ready to go back to the motel to nap and slept through dinner. The next day was a repeat, without a trip to Wal-mart and a lunch just with Scott's parents, and then back in the car to head home. I think I spent over 9 hours in the car and maybe 4 or 5 actually awake and visiting with folks I don't live with.

And then I came home and promptly ended up canceling every medical appointment I had for the next two weeks other than acupuncture.

I pretty much just barely felt like I had my head above water again and then discovered that what seemed like a manageable amount of activity over a weekend was way too much. For me, at least. It was actually too little activity for Ellie, but that's a whole 'nother blog. 

On April 30, we had ballet tickets for a performance that lasted a little over 2.5 hours, including two intermissions that totaled 25 minutes combined. I took a pain pill at the first intermission, and I'm pretty sure that's all that got me through the rest of the performance. (Which was amazing, btw.) Sitting for that long without being able to change positions very much was painful. Very painful.

On May 1, I had signed up for a 2-hour class for me and Ellie to attend together to dye silk scarves at Oregon College of Arts & Crafts. I wasn't recovered from the ballet (how lame that attending the ballet wiped me out!), so rather than getting Scott some woodshop time on his own, he drove us to the campus and hung out in his nearby office while we painted on scarves. Which was a mixed success thanks to Ellie's lack of physical activity over the weekend as mentioned earlier. 

And it's been, what?, two weeks since then? I'm still wiped out and wondering when I'm going to find the energy for doing things like, oh, laundry. 

So that's what I've been up to. How about you?