Monday, February 23, 2009

Weird Symptom #379

This is the most bizarre symptom(s) I think I've ever had.

I'm clearly having a flare of my mystery illness, whatever the heck it is. The swelling in my hands isn't as bad as it was Thursday night and Friday. But it's still noticeable (to me, at least).

And my pain levels are up in general, although I've been trying (successfully so far) to refrain from the pain meds. But this is going to drive me crazy. I've got an appointment with my internist for Friday, but I think I'm going to have to call in the morning and beg to be fit in sooner.

So here it is, and remember, I warned you that it was weird:

I feel like my hands are covered in hundreds if not thousands of needles. And we're not talking the nice, skinny acupuncture needles that don't hurt. These are painful. I keep looking at them to see if a porcupine has managed to sneak inside the house and wrap itself around my hands. It's worst in some ways on the tips of my fingers, right where you'd expect the most nerve endings. But it's the backs of my hands and the palms and all the way around my wrists and a couple inches up my forearms.

It's at its worst at night. I don't know if that's because I'm winding down and have fewer distractions. Or if it's because I'm worn out and pain is almost always worst at night.

The really bad part is that for the past few days/nights, it's been limited to a sensation on my hands. It's gotten worse, but it hadn't spread. Tonight, it has clearly spread. I have the sensation on my feet and calves and oddest of all (to me), following along my hairline and around my eyes.

It's driving me so crazy that before I gave up on falling asleep at the normal time, I bit my arm hard enough to leave teeth marks.

Just to clarify: This is not the kind of pins-and-needles you get when your leg falls asleep from sitting too long or you wake up having slept on your arm funny and your hand is asleep. It might be related, somehow, to that, but it's cranked up about a million times more painful and irritating.

And now that I'm thinking about it -- I've spent the past few days trying to block it out -- I'm wondering if it's related to the intense itching I've had for the past week or so pretty much all over but concentrated on my extremities.


Thanks to everyone who checked in on me. I survived the auction over the weekend, and while I stayed longer than I should have, I still was the first to leave by a long ways. I stayed only long enough to watch the bidding for the class project my husband did with artwork by my daughter's preschool class.

It's essentially a wooden quilt. The 3- and 4-year-olds used acrylic paint to decorate wooden squares however they wanted. Then Scott cut them up and put them back together in a pattern reminiscent of a Log Cabin quilt. The center was surrounded by a border of labeled handprints, and then framed in rosewood from a stick of wood Scott had bought on a whim a few years back.

Came out great, as far as I'm concerned. And while it wasn't a huge seller, bidding opened at $250 (and I stayed because I was afraid it might go unbought and planned to buy it for $100 if no one else bid) and a couple moms went back and forth before one bought it for $350. It was the first item on the block for the oral auction, so I figured that was pretty darn good since I'd heard that often the first item or two goes for well below the asking price until people get into the bidding.

I'm just so grateful it's all behind us now. It's a huge relief to have it over and done with. I'm still beyond exhausted, but beyond acupuncture and Ellie's ballet class on Thursday, I intentionally kept this week wide open for recovery. Here's hoping it's enough!

I need to do a medical update on the results I got from the immunologist, but it's late and I don't want to dig out the test results. The overview is that I responded appropriately to the pneumonia vaccine so he's hopeful that I don't have an immunodeficiency but he says the real key will be to see if I can retain the immunity and he wants to run those tests again in six months. So, cautiously optmistic news there.

But he also found some of my results troubling if only because they're clearly abnormal but don't clearly point to a cause or a cure. He also referred me to a hemotologist because my level of monoclonal immunoglobulin is on an upward trend. It's still fairly low, but he doesn't like the direction it's going and wants me to be monitored by an expert. So I've got an appointment with on at Oregon Health & Science University (OHSU) on March 17. (The one I saw early on has left her practice and my new insurance doesn't cover her co-workers in-network. But I think this guy will be better all around anyway so while I hate starting with yet another new doc, I think it will be worth it.)

Details on all the tests soon, I promise!

Friday, February 20, 2009

Learning The Laws of Physics

I don't remember who's credited with discovering the law of physics that says that for every action, there will be an equal but opposite reaction.

That's been my learning experience this week.

I guess I've been testing my rheumatologist's advice to "try to push through it" as I found myself over-committed.

I don't remember if I've mentioned that I found reluctantly myself serving on my daughter's preschool auction committee, which has meant weekly evening meetings. Have I mentioned that evenings are not my best time of day?

So I had an auction meeting on Tuesday evening, a MOMS Club board meeting on Wednesday evening (I serve as treasurer) that kept me out until past 10 p.m., and somehow we ended up with Ellie's classroom visit to Catlin Gabel scheduled for 10:30 a.m. on Thursday.

How does life get so complicated?

Acupuncture on Wednesday afternoon helped me find a little energy to get through that evening's meeting, but I was definitely beyond exhausted Thursday morning. It was important to me, however, to make it to Catlin with Ellie, partly to minimize how much of the work day Scott would have to be away from the office.

After the classroom visit (which seemed to go well!), I had planned to take Ellie back to preschool for a few hours before I needed to pick her up for ballet class. Thursdays are the one day that I pick Ellie up from school, take her to ballet and then have a little one-on-one time before Scott gets home from work. It's challenging even on a good week, but this week was much harder than normal.

We spent more time at Catlin than I expected, so we needed to get Ellie lunch before I could drop her off at preschool since she missed mealtime there. Scott's office was nearby, so he suggested we eat at the cafeteria there and some of the people who haven't seen Ellie since I got sick would be happy to get to see her. A great idea, but I had forgotten how long a walk it was from the main entrance, where I needed to sign in and get a visitor's badge, to the cafeteria, which is in a different building on the large campus. If I could walk that far without trouble, I probably wouldn't have a handicapped parking pass. And of course, there was the walk back after eating a quick lunch too. By the time we got to the car, I told Scott I didn't know if I could get Ellie to ballet on my own later that afternoon.

By the time I got through traffic and was near Ellie's preschool, I realized that he classmates would already be starting their naps and it would disrupt them if Ellie suddenly showed up. So Ellie agreed that she would quietly watch a movie at home and let me rest until it was time for ballet, and she mostly did.

I called Scott to let him know that I could get Ellie to and from ballet if he could manage to be home when we got back because I was going to be beyond exhausted and done for the day. So I did, and so did he.

By the time I got home at 4:30 p.m., I felt like I was trying to walk through a shoulder-deep swamp wearing a good 40 or 50 pounds of weights. I could only make it up the stairs a couple at a time and then pausing. My muscles weren't working right. Thankfully, Scott had made it home as promised and I went straight to bed. Not that I could sleep, but I couldn't do anything else either.

By 6 p.m. or so, I noticed that my hands were throbbing. I'd already noticed that they were painful and I could hardly grip anything. But this was different. I studied my hands, wondering if I was imagining that the pads between my knuckles were bigger than they had been lately. (I had swelling there early on in my illness, but it's been mostly gone for five or six months.) By 8 p.m., they were swollen and the knuckles on my right hand were red.

Today, the knuckles are still pinker than normal, but not bright red like they were at bedtime last night. The pads are definitely definitely bigger than normal, as are my fingers (which are really not happy with me for making them type ...).

I've got a call into my internist to alert her. But the worst part is that although I don't know how I'm going to get through it, the auction is tomorrow. Scott has already volunteered to take my place at setup at noon, but I'm supposed to report at 4 p.m. to get ready to handle registration for the 5:30 p.m start. If I don't try to stay for the (overpriced) dinner and the auction itself (which is not a big deal since we can't afford anything anyway), I think maybe I can be home by 7 p.m. I'm sure the auction chair won't be thrilled and I won't score points with anyone on the board, but it feels like my only other choice is to bail on them. Scott was already staying home to take care of Ellie, since we couldn't find a babysitter. He offered to go in my place, but not only would that mean teaching him the AuctionPay system, it would leave me trying to get an unhappy 4-year-old to bed when she's going to be upset and wanting her daddy, who normally does the bedtime routine.

I guess I just need to chalk this up to a learning experience about honoring my body's limits and the consequences I'll pay when I ignore them. I thought I'd learned that lesson already, but apparently it hadn't completely sunk in. :(

I feel like a zombie today, and I'm not sure I anticipate being in much better shape tomorrow for the auction, although I suspect I'll get some adreneline once I'm there. But of course, I'll pay for it afterwards, especially if I'm not fully recovered from the rest of the week.

Saturday, February 14, 2009

It's The Economy, Stupid!

Like everyone else, we're getting hit by the recession.

I'm grateful every day that Scott still has a job, unlike the many people I know who have been laid off in recent months. But we're still feeling the pinch as we watch expenses we have little control over, like our utilities, go up. Meanwhile, our income is going down as Scott's employer, like so many lately, has frozen raises and bonuses and even instituted a company-wide pay cut.

We're cutting back where we can, but it's still tough. We had cut most of the fluff out of our budgets back when the reality of my illness sunk in. Now we have to look at cutting back things like our daughter's gymnastics and ballet classes, and maybe even her preschool. And I had just started thinking about seeing a physical therapist who incorporates yoga into her practice, but she would be out-of-network and although her office manager offered me a cash discount until I meet my $500 deductible, it's still more money than it feels like I should be spending on something that I have no way of knowing whether it would help or not.

I'm even thinking of cutting back my acupuncture to every other week instead of every week since that, too, isn't covered by insurance.

And of course, with the new year, we got a new insurance plan, which has higher co-pays for most prescriptions and specialist visits, as well as a higher deductible.

At one point, Scott threw out the idea that he could do some moonlighting as a consultant to bring in some extra money. But assuming he could even find a gig like that, where would he find the time for it? He already works about 45 hours a week in the office, plus five to ten hours most weeks from home.

The ideal situation would be if I were well enough to work at least part-time. But since I can barely keep up with my volunteer commitments, which take just a few hours each month but exhaust me for days after each meeting, how would I manage a job?

I joked that maybe I could get a gig as a phone psychic (do they still have those??) and take the calls from my recliner at home. But even that's beyond me since lengthy conversations often exhaust me and I probably couldn't manage it on a daily or even regular basis.

Laurie Edwards of A Chronic Dose, whom I consider an inspiration, recently cited this article, called "Ill In A Day's Work," from February's More magazine in her blog. And it got me thinking about all the complications involved in trying to work through or despite a serious chronic illness. I don't have any great insights into it, but it's worth taking the time to read.

Happy Valentine's Day, everyone!

Tuesday, February 10, 2009

The Sounds of Silence

Who knew it was so noisy in my head?

I'm sick -- again -- this time with a severe double ear infection and a sinus infection. I felt the ear infection coming on over the weekend as my hearing deteriorated, but I wasn't prepared for how bad it would hurt once the sharp pain set in Sunday night/Monday morning. Yowch!

It's only the second time I've had an ear infection as an adult, and the last time was about a year ago. I'm grateful that, unlike most pediatricians, the doctor I saw yesterday at an Urgent Care immediately prescribed a Z-pack without urging me to "wait and see" if it got better on its own. Of course, it might be the severity of the ear infection that encouraged her to just give me antibiotics. When she looked in my left ear, her first reaction was, "Oooh! Ow!!" And then of course she looked in my right ear and commented that it was even worse.

I'm not deaf by any means, but my hearing is seriously impacted. It's kind of like I'm wearing really thick ear muffs or, perhaps, noise-reduction head phones, combined with the loud white noise of being on an airplane.

On Monday, I never heard my alarm go off in the morning, which meant Scott and Ellie got a slightly late start. (Although not as late as this morning, when I ended up spending the whole night downstairs in my recliner and didn't realize it was past 6 a.m. until I heard a door slam upstairs, which woke me. Oops.