#HAWMC day 20: a room with a view

My blogging is normally done while I’m stretched out on my brown coach, Otis (the pup) curled up beside me. Sometimes, Remy (the kitten) hunkers down on my chest, leaving me unable to see the monitor or the keyboard. (Hi, typos!)

In a perfect world, I would have my own office—a space for me to decorate to my own tastes. There would be a wall filled with frames of pictures, prints and other things I love. There would be shelves filled with books, lots of colour and fresh flowers. I’d have a little iPod stereo, so I could play my music. Years of working in newsrooms makes it hard for me to write when it’s completely quiet. I like having things going on around me.

Back in the real world, I’m sitting in my living room, this week’s edition of my newspaper on the coffee table. Normally the Professor is either watching some James Bond or playing Modern Warfare while I write, which is at least some background noise. Our drying rack is set up with some laundry underneath our breakfast bar. I can see most of the apartment from here—including how much I really ought to be tidying up instead of writing. It’s distracting.

I think if I can’t have my own space, a coffee shop would be the next best place for me to work; there’s plenty of noise, plenty of coffee and it’s where I used to study when I was in university. I think having a dedicate space for my work—including blogging but also crafting and copy I bring home from the paper—would be really helpful. It would be a place I could go to be creative and a place that was mine.

Still, I do like that I’ve got Remy and Otis nearby, even if Remy has decided to lay across my hands, making it extra fun to type. I think she’s trying to give me a hint.

Advertisements

#HAWMC day 11: wikipedia is totally a source

Wikipedia: The bane of academics and the friend to journalists who need a quick and dirty lesson on something completely out of their field, like stormwater retrofits and non-infringing use.

But, as much as I may enjoy it professionally as a jumping off point (fledgling reporters, take note: It is never OK to use Wikipedia as a source in copy), the psoriatic arthritis entry kind of leaves me cold. It’s as sterile as a an operating room and about as pleasant to encounter. Seriously, take a gander. Back? Good.

If I were to have the endless spare time necessary to rewrite the entry on psoriatic arthritis, I would definitely make a few changes. First, why is it seriously the shortest medical entry ever? And the most sparse? There are lots of details that could be filled in, lots of areas that could use expansion. Starting with everything. Writing one line per subhead does not an article make. It should not take me more time to flippin’ braid my hair than it does to read some copy on a serious medical condition.

Also, could they have found a worse picture to showcase what PsA is? Oh, look, your feet are horrifically puffy and your nails look kind of funky. Other than that, it’s all sunshine and lollipops.

For a jumping off point (and a community-edited source), I guess it could be worse. But I would home someone interested in the disease would click on one of the few links to find something, somewhere that was a little bit more in-depth. Like a children’s book or a comic strip.

and doctor up this disease

On Monday, I discovered just how essential Enbrel is to my well-being.

Despite the fact that my mail order pharmacy has had the prescription for about two or three weeks now, they still haven’t gotten my order straight, and I’m still not set up for home delivery of it yet. That presented a problem Monday, when I missed a dose. Actually, my body thought I missed it Sunday, since I’d had to take my shot a day early the week before, while we were traveling. After being without it for one day—one measly day—I could feel my pain coming back. But, I thought it was no big deal; surely, I thought, the pre-authorization needed to get Enbrel had gone through my insurance company by then. I would just call up, get them to authorize the one-time courtesy refill I’m always hearing so much about and I would be OK until the mail order pharmacy thing got straightened out.

Wrong.

The reason the mail order pharmacy hadn’t contacted me for delivery was that they hadn’t received the pre-authorization from my insurance company. There was no real reason for that as far as I can tell when I phoned the insurance company to find out what the frig was going on. It’s just taking awhile, they said.

Well, that’s all well and good, but I needed my shot. I won’t lie: I was terrified Monday night, terrified of the idea of going back to how I felt a month ago. I didn’t want to go back to being in constant pain, so exhausted that I was pretty useless to everyone around me. I lay in bed crying that night, begging God to give me the strength to get through this. I can remember only a couple of other times I was as scared.

Luckily, my rheumatology team is incredible. My NP let me have three additional samples—that’s on top of the three she’d already given me—and the Professor picked them up from me, since he was still on winter break from school. I took it, and all was well again.

But it was a brutal reminder that even though I’m feeling better—well enough, in fact, that I wore heels twice this week—my psoriatic arthritis isn’t gone; it’s just hibernating. Eventually, one or more of the drugs will stop working, and I need to come to terms with that (again). I am grateful for the time I have feeling well or even better than bad. And I am strong enough to get through the times when I feel terrible (again).

counting down the days

I am more than ready for my upcoming rheumatologist appointment. So ready, in fact, that I had them move it back three days, from next Thursday to Monday because I wasn’t so sure I could make it the additional 96 hours or so. It’s amazing how quickly things can go from bad to worse; just last week, I was telling the Professor that there’s no point in moving my appointment back, as it wasn’t all that big a difference to push it back by just three days. Oh, how I long to go back to last week, when that was true.

I’m trying to figure out ways I can get across to her just how poorly I’ve been doing and how far I’ve fallen in terms of feeling halfway decent. The Professor is actually coming to this appointment, so I’ve tasked him with making sure I don’t make light of it and pretend everything’s more or less OK. I’m sure that will help. I was doing well for awhile in tracking my symptoms, but lately I’ve been forgetting. (Thanks, brain fog!)

I guess I’ve got a lot riding on this appointment. I’m not really sure where we’re going to go from here. I’ve tried most of the biologics out there, and the ones I haven’t tried are so brand new that I’m not so sure I want to be a guinea pig for them. My pops wants me to try Celebrex, which he’s apparently taking for lower back pain and is convinced it’s a panacea that will make everything better for me. I told him I’d bring it up with my rheumatologist, so I guess that’s one potential new avenue for me.

I just want to feel better. I’m not even shooting for great at the moment; I’d settle for simply not as bad as I’m doing right now. Once we clear this hurdle, though, I’m going to be gunning for awesome all over again.

be here for me

National Public Radio

Image by Kim Smith via Flickr

I was listening to my local NPR station driving home from my parents’ house the other day. A rerun of the day’s “State of Things” was playing, and as it was the run up to Thanksgiving, they were talking about gratitude. I don’t remember how the panelist got on the subject, but she said something to the effect of this: If you’re helping me because you pity me, go away. But if you want to help me because you see my struggle, you are welcome.

I found that really powerful, like someone vocalised exactly my own thoughts. I’ve read and talked to so many people (not just those of us with chronic illness) who struggle asking for help when we need it. I know I do. I also tend to snap when someone offers  me help when I don’t need it. And I think I may have figured out why (or at least part of the reason why). So much of the time, it seems people offer help because they feel sorry for you or they think you can’t do whatever it is you’re struggling with or some other reason that makes you an object of pity. And just because we’re sick doesn’t mean we can’t see that.

Sure, I can’t open a jar, turn a door knob, sit in a car for long periods of time without pain. I can’t run or wear high heels or even some days button a button. But there is still a lot I can do. And just because I can’t do those things—and I don’t necessarily know at a given time whether I’ll be able to do those things (and others) or not—doesn’t make me useless or helpless or any less of a person.

No one wants to feel like they need help all the time. Or, at least I don’t. And on those occasions I do need help, I don’t want to feel like you’re doing your good deed of the day by opening a jar of spaghetti sauce for me. But if you see I need help, lend a hand and move on, I will notice and I will be grateful. And, to boot, I’ll get to keep a little bit of dignity.

cake or death?

If only all our choices were so easy.

So, I was asked and decided to agree to working a few shifts for the retail outlet I used to work for. I went back and forth about the decision; I’m still not thrilled with the way the store manager handled my request for accommodation during a flare, but without that job last year, I’m not sure how the mister and I would have made ends meet. I felt we parted ways on a bad note, but if there’s anything this economy has taught me, it’s this: Don’t burn bridges. You never know when you might need someone’s help in a way you’d never counted on.

I also remember how amazing my old manager at my old store was during my first flare, scheduling me for shorter shifts, allowing me longer breaks and being so flexible with scheduling. So I know the way my current manager reacted isn’t a company-wide thing. I still feel grateful enough to her and the way she handled the time being my first symptoms and getting put on Humira for the first time and beginning to feel better that it’s transferring itself just a little bit to my current score.

So, like I said, I went back for just a few shifts over the holiday season. In return, I get the awesome discount through the end of December. (Score!) Yesterday, I worked my first shift, a short one. Today, I was scheduled for a much longer one and oh my goodness, am I ever feeling it now. I’m sore all over, and I’d like nothing more than to lay in a tub filled with Icy Hot, drinking some delicious hot tea.

In the meantime, sitting here wrapped in fleece with my cat purring away and giving me a mini-massage is a close second.

mea culpa

OK, guys. I can admit it: Of late, I have been a bad blogger.

Seriously, it’s a week into November, and no posts? This is not good.

So, a promise: A return of the 30-day experiment (part the third) and a tie in with NaBloPoMo. The premise? Easy: I will write every day for a month. And no nonsense posts either; they don’t all necessarily have to be blogging gold, but there needs to be effort involved.

I’m not really sure what happened; I’m just feeling a bit disinterested in everything. It often happens during an extended flare. Once I get to a certain point (when I have a hard time standing up straight, for example), I spend so much time worrying about what is happening to me, will I ever feel better again, is this my new normal, why can’t I wear some kick butt heels anymore (like these, for example), sometimes it can get hard to care about anything else.

I just need to snap out of this, and some mandatory blogging may be just the cure for my indifference. So, here’s to a month of blogging.

time for moving on

So. I had to quit my second job two weeks ago. I wish I could say it wasn’t because of my PsA, but it was. The short version is that we both drew lines in the sand and were unwilling to deviate for them. The only course of action left to me was to quit.

Still, the long version has more shades of grey than that quick paragraph would suggest, as it often does. So, without further ado, the long version:

I have worked my second job, a part-time retail endeavour, for more than a year. I had PsA when I started — hell, I started flaring the first time while working at a different location in the same chain — but if it wasn’t in remission, I wasn’t doing nearly as poorly then as I am now. I was able to work then pretty well, and, because they knew I worked an additional full-time job, they tried to give me at least one weekend day off per week.

Then, fast-forward to the holiday season. I applied for and was given a holiday promotion, allowing me to act like a lower-level manager from November through December. There were two others, in addition to me, were given the additional duties to, for example, to count cash registers, deal with unhappy customers and support associates. Unlike the other two, however, I didn’t get a weekend off while doing that. I worked from Thanksgiving to Christmas with no days off.

That, obviously, took its toll. Like anything else, I got through it because I had to; I didn’t give myself a chance to think about what it was doing to me. Once it was over, though, I started flaring. My Enbrel stopped giving me relief. I was exhausted all the time. Eventually, about a month or so ago, I had to tell them about my PsA. At the behest of another manager, I wrote the store manager and assistant manager an e-mail, saying in no uncertain terms that I had to have one weekend day off per week or I wouldn’t be able to continue working there.

All went well for about a month, with the assistant manager making the schedule and giving me Sundays off. I had time to go to church, see my husband and our pets and recover. But the store manager apparently hadn’t read the same e-mail I’d written; she made the schedule one day and signed me up for two nine-hour shifts, including one on my beloved Sunday off. I had to tell her that wouldn’t work for me; my health is worth more than $8 an hour. She said she was unable to give me Sunday off all the time; if she gave it to me, she said, she’d have to give it to everyone. (Which didn’t make sense to me; I had a medical reason for needing it. I’m assuming not everyone working at the store has a chronic illness.)

So, I quit. And now, two weeks later, I have nights and weekends free (for the most part).

Still, I can’t help but feel this was mostly avoidable. I do feel some responsibility for the way things worked out. Maybe if I hadn’t allowed them to get the impression that I was healthy enough to work 14 days in a row this never would have happened. Maybe I am to blame for the way things fell out. But I’m not sure. I do know, though, that my body was telling me loud and clear that it could not handle nine-hour shifts, double-digit work days and no days off. Hell, some days, I can’t even handle my full-time job.

I guess I’m still learning my new limits, my new normal. It was nice to pretend for a while that I could be Superwoman, but, as usual, PsA didn’t allow me to maintain that illusion for long.

(Image via We Heart It.)

just one more before i go (to bed)

Well, I just got home from work, and the heady mix of an unexpected 15-hour day and sad songs on the drive home has made me kind of melancholy. So, to try to break the mood, I’m going to do a happy list that turns bad or sad things into positive ones. We’ll see how well I do.

  1. Working so much I never see The Hubs. On the plus side, I value the time I spend with him even more.
  2. Working crazy long days at the paper. It gives me time to make sure my work can be the best I can make it.
  3. Stagnation. It makes me want to strive to do something better.
  4. Instability. As scary as it is, it’s also kind of exhilarating; still, it makes me enjoy the small pockets of stability I do have even more.
  5. PSA. Maybe I’ll just come back to that one.
  6. Being so exhausted I can’t think of anymore. That means I get to go to bed! G’night, everyone.