Sunday, August 31, 2008

First Circus at Age 41 -- Does that make the record books?

Wow -- that's all I can say after a two-hour experience at the Greatest Show On Earth!

I thought I was being smart when I told Scott we should try to get there at least 30 minutes early. Who knew that being 30 to 40 minutes before show time was actually being late because we only caught the very end of the "pre show" where you could be down on the main floor and see some performers up close.

Of course, despite having taken Provigil, I stood at the top of the stairs down to the performance area and realized that while I could make it down, I was going to have a heck of a time getting up all those stairs and not feel like collapsing. So I handed Scott his and Ellie's tickets and sent them down to all the excitement while I headed to our seats. And also despite the Provigil, I was beyond exhausted by the end of the show. But I'm so glad I went

I have to say, I think the Rose Garden arena folks took a page from the airlines' book because the leg room between rows was minimal. I was so grateful that we'd ended up with an aisle seat, which I didn't know when I bought the tickets, and that Scott's masculinity wasn't threatened by letting me have the aisle seat. Without being able to stretch my legs into the aisle, I never would have made it through the entire show.

The show was just so cool. My favorite part was definitely the aerialists. I have a friend in Seattle who "retired" from Microsoft a few years ago and ended up training to become an aerialist, including spending months in Australia at what's apparently the best school for it. I haven't had the pleasure of seeing her perform in person, although I've seen photos and videos on her webpage, and I was just in awe of the men and women who performed at the show we attended. I felt like a little kid, wanting to bounce up and down in my seat and say, "I know someone who can do that! Even the silks!" (I've threatened to hire Bev to come perform at one of Ellie's birthday parties, but the problem is we don't have a venue with high enough ceilings. Not to mention we probably can't afford her fee. :) )

Speaking of fees, OMG, the circus is expensive. We paid about $30 per ticket when you add in the fees and "convenience charge" for buying tickets online. I had decided that Ellie, who is 3.5 years old, could have $10 to spend on whatever she wanted, not including food we would buy her since we ran out of time for lunch before we went. Well, that might have been a good fiscal idea, setting a price limit on souvenirs before getting there. The only problem is the vendors were definitely not on the same page as I was. The cheapest souvenir I saw, and one that had nothing to do with the circus theme, was a $12 tiara with "jewels" that light up and blink when you press the center one. The only problem? I'd bought Ellie the identical tiara over a year ago at Target, where I paid $2 for it. And probably overpaid even there!

I expected the food to be overpriced, and of course it was. But I was still shocked when the guy carrying a couple dozen bags of cotton on a tall stick told me it cost $12 for the mostly air-filled bag. "But that includes the hat!"

So, no souvenirs except for our memories and some mostly blurry photos. Oh, and a tacky plastic hat designed to look like the ringmaster's which Ellie refused to wear. (What's a circus without cotton candy?! It was yummy. It tasted a lot fresher than the kind they sell at the Oregon Zoo, which I thought was overpriced at $3 a bag.)

The Provigil boost definitely didn't take me as far as it did on Friday, but on Friday I was coming off of two days spent mostly in bed or in my recliner while Scott and Ellie were out exploring the world. So I was coming from a better place when I took the medicine Friday morning. Today, I definitely didn't get anywhere close to feeling like "me" again. But on the other hand, without the Provigil, I probably would have ended up sending Scott and Ellie to the circus without me, and that would have disappointed both me and Ellie.

Cost of a ticket to the circus? $30
Cost of a cup of lemonade made to look like a baby bottle? $9
Cost of a normal day out with my family? Priceless.

(P.S. We did not buy the baby bottle glass of lemonade for $9.)


Ok, since I can't resist sharing the handful of photos that turned out pretty cool:

I liked the guy's faux tiger stripe shirt/vest. But mostly I wondered what language he was speaking when he spoke to the tigers because it definitely wasn't English. I think it might have been Eastern European ...

There were no lions in the show, but I thought it was suitably impressive when he got the tiger to stand on its back paws. Luckily, they did it like three times so I was able to catch it:

So most of you probably don't know this about me, but I've always enjoyed trashy romances, particularly ones set in England anywhere from 1500-1850 or so. I liked this photo because he makes me think of the knight on a white horse ... he led about a dozen of riders doing tricks on horses that were amazing, but my camera could either capture photos in low light or moving figures, but not both. :(

I'm not sure exactly how I got the photo below so barely blurry since those miniature horses were definitely in motion. They were so beautiful and matched so well!

Send in the clowns:

Unfortunately, none of my photos of the aerialists came out very well, but I can't resist sharing anyways:

The Good, The Bad & The Ugly

I've been more depressed lately and have taken to weeping on my husband around bedtime, so I thought it was a good idea to pay my internist a visit and see if she thought we should tweak my antidepressants.

I've been on Cymbalta almost a year now. Sometime early last fall, when it sank in that this mystery illness wasn't going away quickly, I requested antidepressants because the illness was making me depressed and anxious. I had mixed feelings about going on antidepressants because it seemed to me it was normal to be depressed and anxious when faced with a mystery illness and having your life turned upside down by it. But I figured my being so upset about it all was making Scott & Ellie's lives harder so it was only fair to them I try to do something about my moodiness.

Over the past year, we've upped my dosage twice and now I'm on the maximum dosage of 120 mg per day, and have been for about two months.

So my internist said if it continues, she'll have to refer me to a psychiatrist who would be able to add other meds to the mix to help my mood. But she also agreed that my current mood seems to be caused by feeling like I'm on the sidelines of Ellie's life. She and Scott have done so much this week that I wasn't well enough to participate in -- her first rollercoaster ride, her first ballet lesson, her first trip to an aquarium and her second trip to the beach. And so much more.

I saw the internist on Thursday, and she had finally gotten her hands on some Provigil, the stimulant that my insurance refuses to pay for because I don't fit their criteria for it. Apparently, every time the Provigil drug rep comes into the office, the samples s/he drops off disappear instantly. But my internist managed to grab some this last time and put them in a locked cabinet until my visit.

I took my first dose on Friday. And it was just .... amazing. I was afraid it would make me jittery like I'd overdosed on caffeine, but no. I still had pain, but it was the first time in 15 months that I felt like me again. It was incredible. I still had to take some pain meds, but less than my current normal daily doses.

We left the house around 11 a.m. and had a picnic, then went to New Seasons to pick up a rotisserie chicken and side dishes to bring to my friend Heidi, who recently had her second baby. We stayed at her house for two hours, supervising Ellie playing with Heidi's daughter, Francesca, who's about a month older than Ellie.

Now normally, even that would have been too much for me. But when we left Heidi's house, we decided to use our one-time pass to the Nike Employee Store because it would expire today and we'd been warned that weekend hours would be jammed with people. And wow -- the place was huge (and crowded, even at 3 p.m. on a workday) but we had our list of items we wanted to buy for family members and for ourselves (Scott got three pairs of sneakers!) and we ended up spending like 90 minutes there.

Yes, I was melting away at the end of the shopping experience. But the fact that i was on the go from 11 a.m. to 5 p.m. was just incredible. Unbelievable. And I was just so joyous about having a normal, typical day without feeling like a zombie.

But of course, it all came crashing down. By the time we had dinner, I could barely sit up at the table. And Saturday? In bed the whole day except for 30 minutes in the morning when I came down for breakfast (at 11 a.m.!) and thought I'd be able to watch Ellie so Scott could mow the lawn.

Didn't happen.

I lasted as long as I could, but within 30 minutes of going downstairs, I was back in bed feeling like I imagine it feels to run a marathon without doing any training for it.

I'm doing a bit better today, but if it weren't for the fact that we have circus tickets for a 1 p.m. show, I would still be in my jammies. (As it is, I'm typing from bed, waiting until the last possible moment to go downstairs. I probably shouldn't even be using my limited energy to type right now ... )

I did take another Provigil this morning. (I didn't on Saturday. I started with 21 pills and since I don't know when I'll be able to get more, I want to use them only when I need them.) (G-d, I feel like such a drug addict when I write/say/think that.)

And the Provigil is helping already, although I was starting from such an enormous deficit of energy today that the improvement doesn't feel as good as it did on Friday.

Now the downside? I took a shower today after taking the Provigil (which is how you know it is helping, even today, because I wouldn't have been able to shower without it) and discovered a rash on my hip. It's probably nothing, and not related to the Provigil, but a rash is one of the side effects that the insert warns to "stop taking drug immediately and call your doctor."

"Rare cases of serious or life threatening rash, including SJS, Toxic Epidermal Necrolyis and Drug Rash with Eosinophilia and Systemic Symptoms (DRESS) have been reported. ... Although benign rashes also occur with modafinil, it is not possible to reliably predict which rashes will be serious. Accordingly, modafinil should ordinarily be discontinued at the first sign of rash. ... Discontinuation of treatment may not prevent a rash from becoming life-threatening or permanently disabling or disfiguring."


It's a relatively small rash so far, and isolated. So we'll see what happens, and I guess I won't be taking any more Provigil without discussing it seriously with my doctor.

Tuesday, August 26, 2008

Miscellaneous Musings

So I just have to say how impressed I was with Hillary Clinton's speech tonight at the Democratic convention in Denver. I've always liked and admired Hillary from way back when Bill Clinton was running for his first term. I wasn't so sure of him back then, although I ended up liking him a lot and have a lot of respect for all he accomplished on the job, but I knew I liked Hillary Clinton. And for all those people who claimed Bill was helping campaign for Hillary just to get back into the spotlight -- the look of pride and joy on his face when Hillary got onto the stage and started talking just blew those critics away.

Anyway, I know not everyone agrees with my politics, and I apologize for going into politics here. But Hillary Clinton's speech tonight made me proud I voted for her in the Oregon primary last May. I just wish I could be voting for her again in November.


I realized today, although I guess I knew it before in some ways, that the worst part of this stupid mystery illness of mine is that it's making me miss out on so many parts of Ellie's life and development. I swear she's changing and growing right before my eyes and I feel like I'm stuck on the fringes of it all because I just don't have the energy to be right in the midst of it all. This wasn't what we planned when we decided I would be a stay-at-home mom, and I'm resentful of having to miss so many important moments in her life.

Ellie's school is closed this week while the teachers prepare for the school year to start Sept. 3. Scott took vacation time to take care of Ellie since I clearly can't, and I had initially warned him that I would probably spend most of the week camped out in our bedroom. But the thing is, I really like spending time with Ellie and with Scott, so it's harder to do that than I expected.

Scott planned out a bunch of fun things to do with Ellie this week. But most of them are things I want to be part of too. Today, he took Ellie to Oaks Park, an old-fashioned amusement park in town that has a "preschool special" twice a week during the summer for kids under 6. I took Ellie once two years ago, when she was 18 months old, and she was afraid of all the rides, even the carousel.
I meant to take her back last summer, but of course that didn't happen. So I put it on their schedule for today and told a bunch of my mommy friends that I'd be there too, even if I spent most of the time sitting on benches while they did the rides. Best laid plans and all that. After three days of over doing things with Scott and Ellie, there was no way I could go to Oaks Park today.

They went without me, and Ellie was able to see many of her favorite old friends. But I missed seeing her ride her first rollercoaster, go down the giant slide on a blanket all alone, and so many other firsts. And a bunch of my mommy friends turned out, all of them asking Scott about me. I'm sure he didn't tell them that I cried at bedtime last night because I knew there was no way I was in any shape to go anywhere the next day.

And tomorrow he's going to take her to a drop-in ballet class for ages 4-6 led by someone from our local ballet troupe, Oregon Ballet Theatre, which each year puts on OBT Exposed in a park downtown. I can't believe I'm going to miss her first ballet class ...


I think it's funny that many local bloggers have complained in the past week or so about the rain, which lasted about a week. Yes, it's unusual to have much rain in August in Portland. But it happens, you know? And I guarantee that none of those bloggers who griped about the "unseasonal weather" this month will have a bad word to say when we have "unseasonal" sunny and warm days during the winter rainy season, which also happen most years!


A long, long time ago, I asked here for suggestions for other email software suggestions because my Eudora software is old and bloated and they have stopped updating the paid Eudora software. I strongly dislike Outlook Express, so I don't want to start using that. So what should I use?

Several people suggested I try Mozilla's Thunderbird. And since I've fallen in love with Firefox, I figured I'd start out with Thunderbird with my new laptop. (Did I mention I got a new laptop in late July? I love the freedom of it, and I don't know if I'll ever go back to a desktop again!)

Here's the deal though -- I can't figure out how to create new folders so I can have my mail filtered in various mailboxes. I desperately need to be able to sort my email, particularly since I somehow became treasurer of my MOMS Club chapter and have been shocked at how much stuff that comes up that the board needs to discuss via email between our meetings. Seriously, it's a light day if I only get a dozen or two board emails.

I've tried deciphering the help system in Thunderbird, but I just can't seem to find exactly what I need. If anyone can offer any advice, I'd appreciate it! Meanwhile, if there's another email program you swear by, let me know. I'm perfectly happy to pay for a program I like (I paid for Eudora many times because I didn't want the ads for the free version). Thanks!

Sunday, August 24, 2008

Pushing My Limits

It's midafternoon on Sunday, and not only have I had way too much weekend already, I'm a bit worried about the next ten days while Ellie and Scott are home full-time for "vacation."

(Touchstone Preschool closes for a week-plus to get everything cleaned up from the summer program and ready for the school year to start on Sept. 3. It will definitely be an adjustment this year to get used a school program with all the holidays and days off rather than the daycare program she was in last year. But so much better of a program for Ellie, even if less convenient for her parents.)

But on the other hand, I'm rather proud of myself for surprising both Scott and myself yesterday when I kept up (mostly) on what turned out to be a four-hour playdate with two not-quite-4-year-olds at Summerlake Park and lunch at a Baja Fresh. I did spend a chunk of the park time sitting on benches with varying amounts of shade, but we also walked to a little foot bridge over the lake and fed half a loaf of bread to dozens of geese and ducks. Adriana and Ellie had a blast doing that, and were a little disappointed when the birds decided they weren't hungry anymore and took to the air circling the park twice before disappearing to who-knows-where. (They are very well-fed geese and ducks.) We even spotted a pair of otters in the water, although they didn't seem at all interested in our bread. (What do otters eat, anyway?)

After a trip to the largest port-a-potty I've ever seen (it was wheelchair-accessible), the girls decided to follow a path into the "woods." We found our way to the park's second playground, where the girls were delighted to find "big kid swings" (as opposed to the bucket swings for babies and toddlers at the first playground) and long logs split in half and connected together that made great balance beams for walking on and jumping off.

About halfway through the park part of our playdate (before we went for the walk through the woods to the second playground), I was sitting alone on a bench and suddenly thought to myself, "Wow ... I feel almost OK." And that was huge, especially since I'd been so exhausted when my alarm went off and I had to get out of bed for the 10 a.m. playdate. I honestly wasn't sure I'd be able to go at all, so although I wasn't bubbling over with energy or anything, it was a lot better than I feared I'd be feeling at that point.

Of course, if I'd been smart, I would have suggested ending the playdate then, while I was still feeling fairly good. But the girls were having so much fun, and they don't see each other often since Ellie left Kindercare in June, that I hated to be the spoilsport.

And of course, because I never really recognize my limits until they're far behind me, I overdid things and barely could walk up the stairs to crash in bed for a nap when we got home. And I'm still feeling the effects today, although I did manage to drag myself to Ellie's swimming lesson this morning.

But still. It felt kind of inspiring to feel like I'd used my leg muscles a little again and actually gotten a modicum of exercise. Ok, I probably only walked a quarter mile, or maybe a teensy bit more. But I'm guessing that might be the most exercise I've gotten since I got pneumonia in June 2007.

Hopefully it won't take me forever to recover from this weekend, and hopefully, I won't be completely bed-ridden by the time Ellie's "vacation" is up. But I did learn that sometimes I can surprise myself at what I can do when I push myself hard enough. (Now if I could just get rid of the consequences of having pushed myself, I'd consider myself functional again ...)

Friday, August 22, 2008

Studying Sleep

How appropriate that I write about a sleep study on a night that I'm having trouble falling asleep. :)

I'm officially scheduled to go in for my sleep study at 8 p.m. Oct. 1. I'm told that lights out will be at 10 p.m., and I'm hoping that it doesn't take the entire two hours for them to attach the 20 electrodes to my head and face.

The sleep study ends at 6 a.m. on Oct. 2, and then I get to spend the next 11 hours at hospital for what they call a multiple sleep latency test. For that, I'm allowed a 20 minute nap every two hours, at 8 a.m., 10 a.m., noon, 2 p.m. and 4 p.m. That will determine whether I have narcolepsy and/or the degree of my daytime sleepiness.

I have some qualms about how it will all work. For one thing, I don't fall asleep quickly under the best of circumstances. The person who registered me for the sleep study suggested I get sleeping medicine, such as ambien, but it seems like that would give them an unnatural impression of my sleep habits since I don't normally take sleeping pills. (And honestly, I've tried Ambien and it doesn't work all that well for me most of the time.)

As for the naps -- well, I'll be shocked if I've done more than just about dozed off when they decide the 20 minutes are up and it's time to wake me up. I'm told I can watch TV, DVDs, read or surf the Internet during the periods between my allowed naps. But I'm wondering how the heck they'll keep me from dozing off while reading or watching television. I hope they don't use electric shocks to keep me awake. :)

For a good description of both parts of a sleep study, go here.

My sleep study will be done at Providence St. Vincent Medical Center, which is where I was hospitalized last summer and also where I gave birth to Ellie.

I have mixed feelings about it all. I don't really think I have obstructive sleep apnea or narcolepsy -- although you never know -- but it's an apparently necessary step to try to persuade the insurance company to cover Provigil, which my internist wants me to try to see if it helps with my debilitating fatigue.

I just hope I don't decide to sleep walk while I'm there ... :) when I was in college, the girls in my sorority used to whisper about my sleep walking. I'd have thought it was all an elaborate joke, but a couple good friends insisted they'd seen me do it more than once.

I was told that during the MSLT part of the study, I could walk around the hospital and visit the cafeteria, but I don't really see that happening. I think I'll be embarrassed enough about all the electrodes and wires that I'll be asking them to bring me my meals in my room.

Tuesday, August 19, 2008

Book Review: Life Disrupted by Laurie Edwards

I don't normally do book reviews. The truth is, I'm a book slut -- I read constantly, and I'm not all that discriminating in what I read. If it's well-written and entertains me -- and especially if it helps me forget how lousy I feel -- I'm happy with a book.

I also don't buy books very often. I love the Multnomah County Library system, which has a great collection and even has an outreach program for people with disabilities or chronic illnesses (like me!) who have trouble getting to the library.

But I bought Life Disrupted: Getting Real About Chronic Illness In Your 20s and 30s primarily because I wanted to support its author, Laurie Edwards, who has been incredibly supportive both of me personally and my blog. Her blog, A Chronic Dose, was the first I found when I started looking for inspiration last fall on how people with chronic illnesses cope and manage to have a life outside being sick.

Honestly, I expected that I was beyond the audience Laurie was writing for -- I'm in my early 40s, college and the early years of starting a career were long ago, and I'm thankful every day that I'm married and, G-d willing, will never have to worry about dating again. But I knew, based on regularly reading Laurie's blog, that the book would be well written and interesting, and it definitely met those expectations.

But Laurie did surprise me, and even though I'm older than her target audience, in some ways I felt like the book was written just for me. I identified so much with Laurie's anecdotes about her own life, and those from a handful of others.

I might be in a different place in my life -- married (Laurie is married too, but the book describes the trials and tribulations of dating and relationships when you never know when you're going to end up back in the hospital again), mom to a preschooler, unemployed -- but everybody with a chronic illness is trying to balance their illness and their life and relationships.

And Life Disrupted really is an inspiration on how you can have a life, have close friendships, fall in love, advance in your career, and follow your dreams even when you've got a rare (or not so rare) and debilitating disease.

And I'm not the only one who thinks Life Disrupted is a wonderful book that fills a niche that was empty until Laurie had her book published. The book has received rave reviews from Publisher's Weekly, Library Journal, newspapers (The Boston Globe called Laurie the Carrie Bradshaw of chronic illness :), and many, many blogs across the Internet.

So, seriously, if you have a chronic illness, or are close to someone who does, this book is for you, regardless of your age.

Tuesday, August 12, 2008

Looking Ahead To The New Year

My synagogue has been sending out a flurry of snailmail and emails as they get organized for the High Holy Days, Rosh Hashana (the Jewish New Year) and Yom Kippur (the Day of Atonement).

I've always thought that Rosh Hashana was more accurate timing for the start of a new year, compared with January First. How can there be anything new or renewed in the middle of deep winter?

But Rosh Hashana comes in autumn, often close to the start of the school year, and even as a not-very-religious Jew, I've always taken Rosh Hashana more seriously than New Year's Eve or Jan. 1. It's not a Jewish tradition, but I've often made new year resolutions around Rosh Hashana time. And it's always a time of looking both back on the previous year and ahead to the year to come.

Like Christians who only go to church on Christmas and Easter, the High Holy Days often brings out the full, overflowing congregations to the synagogues, many of whom don't attend services except for these holidays and the occasional bar/bat mitzvah.

In a Jewish holiday or sabbath service, there are many places where congregants are honored with invitations to participate in the service -- opening the ark that holds the torahs, an aliyah during the torah reading (in which the person stands next to the torah reader, says prayers before a section is read and more after that section is read. I can't remember exactly how many aliyot there are during a shabbat torah service -- I used to know, and I suspect at least one person will comment to correct me :) -- but I think it's somewhere around six or seven.)

On a non-bar/bat mitzvah shabbat, it's not uncommon in smaller communities to have someone walking around among the early comers to the service trying to coax congregants into doing one of these roles.

But on the High Holy Days? When everyone and his brother is there? I always assumed those honors went to generous donors and those who volunteered long hours at the synagogue.

So I was pretty surprised last week to get a letter from the synagogue asking if I would accept the honor of opening and closing the ark during part of the service on the first day of Rosh Hashana. (I don't even know what part of the service it is -- the letter just said I'd be on the bima for pages 192-198.)

It's a huge honor, and I know it. I'm sure it was offered to me because the rabbis and other staff at Neveh Shalom know how sick I've been and how hard it's been on my family. (Although for all I know it could be a completely random thing too, that they have a computer program that selects congregants who haven't done it recently. But I prefer to believe I was intentionally chosen for the honor. :) )

And yet, I regretfully turned it down. It's a long service that day, about four hours, I think. And I don't think I could last the entire service but don't know exactly when my "part" would be. (The rabbis could probably give me a time estimate, but i didn't ask.) Six pages during a service can either be a really brief period -- because sometimes there's a lot of white space on the pages or big chunks are only recited when the holiday occurs on shabbat -- or it can seem pretty lengthy. I don't know how I'd do on my feet for that time, and it's traditional to be standing whenever the ark is open. (Ill or disabled people or those who for some other reason cannot stand don't have to. But it seems to me it would be weird to go up to the ark and open it and then start looking around for a chair or stool ... maybe I'm just self-conscious because I know there's no outward sign of my illness.)

But like the actors and actresses who are nominated but don't win at the Oscars, it's an honor just to be asked.

Meanwhile, I'm hoping that the new year brings me some answers. And a remission -- or getting better permanently would be even better -- would be most welcome too. As for resolutions? Well, I've got some time to think about it since Rosh Hashana isn't until late September this year.

And the current plan is for us to attend the service for the families with kids 5-years-old and younger. I'm pretty sure I can last an hour, even in uncomfortable chairs.

Ads Paying Better ThanExpected

So some of you (who don't use AdBlocker or another program to block ads on websites) may have noticed I added advertisements to my blog this summer.

I had mixed feelings, mostly because I so appreciate the many people and organizations who don't fill their sites with advertisements (especially the pesky pop-up and pop-under ones!). I've even been known to contribute to ad-free sites just so they can afford to stay ad-free.

But a good friend added advertisements to her blog, and my dad strongly encouraged me to do so with mine. He pointed out that I used to get paid a lot to write, and perhaps my blogging would bring me in a little revenue that I otherwise wouldn't be earning.

So I finally got around to doing so. And the sky didn't fall in. But the click-throughs (clicking on ads) hasn't been huge and that's no big deal. Heck, if my friend Karli hadn't mentioned she added ads, I wouldn't have known it because I was using AdBlocker at the time. (I've stopped since I decided it was hypocritical to block ads while viewing other sites but to put ads on my own and hope everyone else wasn't blocking them.)

Then the weirdest thing happened. I actually got a call from a research company wanting to know if I would be interested in participating in a panel. Well, sure. I love doing focus groups, although I haven't done that many. I don't know yet if I've made it through the screening, and if I do, I won't be able to tell y'all what it was all about because you sign a confidentiality agreement when you participate in these things. But the only reason they were even interested in me in the first place is because I'm a blogger who had ads on her site.

Wild, isn't it?

Wednesday, August 6, 2008

The Shrinking World

I've been feeling lately that my world has been shrinking.

I was very over-scheduled in June because essentially every doctor I see for just about anything wanted to see me at least once. I was ending up with three, four or even five medical appointments a week (including acupuncture). And then I was also finding time to run brief errands too -- never more than a brief trip to a store, and usually only the ones that offered electric scooters. And all that was just way too much.

I don't know if that's what triggered my flare-up last month or not. All I can really do is guess. But I find it somewhat amusing, in an ironic kind of way, that it was only after I got worse again that I realized how much I'd improved. (I think it was the acupuncture, which went on hiatus when my acupuncturist's baby was born in late June, that was responsible for the improvement, particularly in my energy levels.)

These days, I find myself mostly housebound again, and sleeping more than I have in at least several months. I've had weeks when I haven't left the house at all despite having a long list of errands and things I'd like to get accomplished. Heck, I haven't even had the energy to tackle the stack of DVDs I got from the library delivery last month. (Good thing they give me two months between visits!)

Last time I was this house-bound, my illness was still in its early phase and was new so people made a point of visiting and volunteering to help in various ways: Friends brought meals, arranged playdates, visited me even on weekdays when
Ellie wasn't here.

And over the year-plus that I've been sick, a lot of acquaintances have fallen by the wayside. I haven't been able to keep in touch with as many people, even via email. And I'm sure there's always the element of "out of sight, out of mind" for casual friends who get caught up in their own lives.

I find it interesting that in the early days of my illness, I found it very isolating and lonely to be home and unable to get out and be around people. I was incredibly grateful for those people who made the time to come visit me, especially the other moms with young children who have so little time to themselves.

These days, I guess I've gotten more comfortable with being home alone and having less contact with the outside world. I have so little energy lately that I'm grateful when I look at the calendar and don't see any doctor appointments or commitments.

I'm not sure if that's a good thing or a bad thing. Certainly it's good not to be wanting what I can't have. Last year this time, I really grieved the loss of my playgroups and being able to do things with Ellie on my own. Now it still saddens me that I can't take care of my own child by myself, but I enjoy the quiet when the house is empty. And I'm grateful that when no one is home, I can sleep as much as I want without feeling guilty. I'm less inclined to make phone calls to chat with people than I used to be.

And I wonder if it's a bad thing to be satisfied with what seems in some ways to be such a small life. Or is it healthy to accept my life as what it is, with ups and downs and limitations.

I went to a birthday party last weekend for a former co-worker's 5-year-old son, and was happy to see another former co-worker there. I'd wanted to check in with how she was handling being essentially pressured out of her job due to worsening multiple sclerosis. She hadn't answered emails I'd sent or voicemail I'd left. And I know from experience how hard it is when a chronic illness drastically changes your life. Although leaving the job she'd loved for many years was hard, she told me the hardest part was having to give up driving because she could no longer move her legs well enough to handle the foot pedals. (I'm not sure if her hands are reliable enough to get her car converted to hand controls, but I know she doesn't have the money right now anyways.) She is feeling very lonely and isolated -- losing the ability to drive was worse than losing the job, she said -- and I certainly remember feeling that way last summer and fall.

I think my friend is still in the angry stage of the grief process. Sometimes I think I haven't so much reached the acceptance stage as I've just lost the energy for the other stages.

Saturday, August 2, 2008

New Toy

So I have a new toy -- a Gateway laptop that I'm still learning to use.

I'm hoping that being able to be online from places other than my desk, where I tire quickly, will help me feel like I can stay more connected. We'll see!

I had some money set aside from my AP days (my credit union account) that we've declared my education funds. I don't know that I'll manage to start taking classes in the fall like I hoped, but a laptop is going to be essential no matter when I start.

And this one was a bargain, although I still need to get a copy of Microsoft Office to run on it. (Boy do I miss having a friend at Microsoft willing to get me software at the company store! The last I got was Office Professional 2003 -- the full version -- for $40. I don't think I'm going to be able to manage that this time!! :)

Anyway, with luck, I'll be able to post more frequently here.

Friday, August 1, 2008

What Was I Thinking?!

I don't know what I was thinking last weekend -- or the few weeks before when I made the plans ...

Last Saturday, we took our 3.5-year-old daughter to the beach for the first time. When she was a toddler, we didn't want to take her because we figured she would just eat the sand. And of course, we had planned to go last summer, and then the Mystery Illness came out of no where and all our plans went out the window.

So it was past time. I thought I was being pro-active because I arranged for our babysitter to accompany us. Otherwise, I figured, I'd be so exhausted from entertaining Ellie during the 90-minute drive that I wouldn't be able to do anything once we arrived in Cannon Beach.

That was a good plan. And it was nice to be able to sit in the front seat and have someone else back with Ellie. But what I didn't count on was how curvy the road we took was! I tend to hold onto the handle above the door on curves, especially when my husband takes them fast. By about halfway to the coast, my right hand was aching from holding on so much. (Yes, of course I wear a seatbelt and he wasn't driving recklessly, but if I don't hold on to brace myself, my body sways in ways that are achy too.) I found myself cheering inside when we got stuck behind a slow driver in a no-passing zone.

We left home a little before 9 a.m. and got to Cannon Beach around 10:30 a.m. After a quick stop at the public bathrooms and my reminding Scott that we needed to look for parking close to the beach and not just park in the big lot five or six blocks away like we used to. We got lucky and found parking less than a block from the stairs leading down to the sand, which was great. And I carefully took another dose of my pain meds before leaving the car because I wanted to try to keep things under control by taking them on a regular schedule instead of when my pain levels get too high like I often do at home.

This is the Pacific Northwest, so it's not like going to the beach in Hawaii or Florida. The high was supposed to be 60 degrees, but it was more like 53 when we arrived -- windy, foggy and misting. So we piled on the fleece, grabbed some towels and the sand toys and headed out.

It was really important to me to be there for Ellie's first visit to the ocean. (I may have been to the Pacific Ocean when I was in California at age 5 for a cousin's bar mitzvah, but I have no memory of it. As a Chicagoan, when I thought of the beach as a kid, I thought of Lake Michigan! So I was in my mid 20s the first time I really saw the ocean.)

But really, other than take some photos, I couldn't do much except sit on a towel and watch while Scott and our babysitter, Angie, fetched water and wet sand to help Ellie make her first sand castle at the beach. (She has plenty of experience building them at parks and the sandbox at preschool.) I was a little surprised at how uninterested she was in looking for seashells, but happy she was having fun.

Was it really worth the consequences for me to go along?

After all the preparation for the day trip and the drive out there, after about 45 minutes, I was done. I left the three of them playing in the sand and headed back to the car to try to get a little rest. But even that little bit was way too much for me and the hour alone in the car helped, but wasn't anywhere near enough to refresh me.

When they came back to the car, I pitched in with getting Ellie cleaned up as best we could and then Scott suggested we go for a walk and find a restaurant. I had to, again, remind him that I was already exhausted and didn't have the strength to go looking for a restaurant. At that point, I wasn't even hungry, I was just beyond exhausted. I suggested the three of them could go without me but if he wanted me to come along, we needed to drive and find a place we could park near.

And we did, although we didn't eat at any of our old favorite restaurants because none of them had nearby parking. And we did get lucky and find a parking place right in front of the old-fashioned candy store, where we bought the requisite salt-water taffy. And then we drove home, thank goodness.

And other than dragging myself along for Ellie's first swimming lesson the next morning, I've hardly been out of my PJs all week. I'm dreading that this is a Friday, which means Ellie and Scott will be home for another two full days even though I haven't recovered yet from the last weekend. (I find it ironic that with this illness, I look forward to Mondays the way I looked forward to Fridays when I worked, or even was just taking care of Ellie on my own.)

Fatigue just doesn't begin to describe my lack of energy. Even exhaustion doesn't. Scott still sometimes calls me his "wordy girl," but I sure haven't been able to find the words to describe how I feel.

I'm never quite sure whether the consequences are really worth it when I force myself to do something that I know will be too much for me. But on the other hand, I'm a mom, and even though I may be sick and feel lousy, I still want to be there for the important moments in my daughter's life. I feel like an absentee mother too much of the time as it is -- I'm physically present, but that's about it more often than I'd like.