Friday, November 30, 2007

WooHoo! Daily Posts for 30 days!

I wasn't really sure I could do it when I signed up for NaBloPoMo, but hey, I did!

I posted at least once for every day in the month of November! Woohoo!

I think it was a great exercise in commitment to writing every day, but while I hope to continue to post frequently, I think I'll be skipping the days I really don't have anything to say. At least until next November. :)

Thanks to those of you who stuck with me and read this blog regularly this past month!


So, I'm a little over 24 hours off the Plaquenil, and the side effects I was feeling are pretty much all gone. I still have the slightest twinge of nausea left, but it's just barely there now and I suspect it will be completely gone by bedtime.

I guess it was a good call on my internist's part to discontinue the medication until I see the new rheumatologist she's going to send me to.

Thursday, November 29, 2007

More Info on Undifferentiated Connective Tissue Disease

Many thanks to SharonMV, who left a comment on my Slight Nuance post recently, giving me the correct name of my nonspecific, working diagnosis as Undifferentiated Connective Tissue Disease.

I found some great information on the Web about it, rather than reading about the various types of named connective tissue diseases, such as lupus, rheumatoid arthritis, etc.

I learned some very interesting things:
  • If you go more than 12 months with UCTD without being diagnosed with a more specific disease, such as lupus, you are likely to have remained in the more generic UCTD diagnosis 10 years later.
  • You're less likely to suffer organ damage with UCTD versus lupus.
  • Treatment seems very similar to lupus, if not identical, but with less frequency of serious developments.
  • It's possible to go into permanent remission with UCTD, but I haven't seen anywhere that offers that possibility to lupus patients.

My source for most of this is, more specifically here.

National Jewish Hospital, which has been highly recommended to me by my Denver relatives, also has some good info, although it's not as detailed as the eMedicine stuff.

To SharonMV: Thanks also for telling me about CVID. I plan to ask my internist about that when I see her next week. I have had my IGG levels tested, sort of. Initially, my IGM was moderately positive while the IGA was negative. When I was tested again a month or so later, my IGM figures had gone up slightly but were still in the "moderately positive" category. However, the IGA had turned positive and was now in the "moderately positive" category. I haven't seen anything with the IGG or IGG subclasses mentioned, which doesn't entirely rule out that I have had it tested but I do have copies of most of the bloodwork done on me and it's not in there at all. Anyway, I'd love to hear more about your experience; if you're blogging somewhere, please post a link for me! If not, you can find my email address on my profile page, and I'd very much like to hear from you.

So Much For That Idea ...

Well, so much for the Plaquenil. At least for now.

I called my internist asking whether I was actually sick or whether these were side effects, and if so, would they go away if I kept taking the medicine.

Well, she's a great doctor, but she's an internist and not a rheumatologist, so she doesn't have a lot of experience with Plaquenil and couldn't answer that last part.

She said it did sound like the drug was doing too good of a job fooling my body into thinking it has malaria, and told me to stop taking it for now. She's working on getting me into a highly recommended rheumatologist, and hopefully he will know what to do with me.

In the meantime, the nausea is really debilitating (who knew I could feel more debilitated?!) but it's the constant back-and-forth between chills and being drenched with sweat that's really getting to me. I do have a low-grade fever, which I've had almost constantly since June, but nothing that should be making me feel this way. Ugh!

So now we'll see. If the symptoms don't stop when I've been off the meds for a day or so, then we'll know it was a virus and I'll probably go back on them. But I have my doubts ... although I did catch a cough and some cold symptoms from Ellie, so it's within the range of possibilities.

Wednesday, November 28, 2007

How Can You Tell If You're Sick, Or Just Having Side Effects?

I'm trying to decide if my new medication, Plaquenil, is causing me to feel flu-like symptoms, or if I'm actually sick with something. The latter is almost as likely as the former since Ellie is sick and she's always quite generous about sharing her germs.

But all my symptoms are also on the list of possible "mild" side effects, which are fairly common at least in the early days of taking the medication. So I keep going back and forth about whether I should go see my internist this week, or wait until next week as scheduled. As I keep procrastinating, I'll probably end up waiting until next week. :)

My nausea is getting stronger, but I'm still not throwing up. I'm feeling so weak and fatigued that simply moving Ellie's laundry from the washer to the dryer tonight made me feel like I needed to lie down. (Her laundry is more complicated than mine since she's more likely to have food stains -- or worse -- on her clothes so I examine each item closely and hold it up to the light to make sure the stains are out before putting them in the dryer. If the stains are still there, I hang them up to drip-dry so I can try again to get the stains out.)

And I've got that thing going where one minute you're freezing and the next minute you're drenched with sweat. (And no, I'm not in menapause yet.)

I remain hopeful that once I've been on the medication for a few more weeks, I'll see a big improvement in my condition. Assuming I can tolerate what I really think are side effects ...


I'm loving Scott Adams' new book, Stick To Drawing Comics, Monkey Brain! I just love the way this man's brain works. I don't know if he's this fascinating in person -- most of the celebs I've met through the AP (granted, a relatively small sample) were not as interesting as they seemed at a distance -- but since I'm not likely to ever cross paths with him, I won't have my illusions shattered.

The book is a collection of his blog posts, which I only recently found although years ago and several email addresses ago, I used to get his Dilbert newsletter via email.

It's particularly nice to read when you're not feeling well and can't concentrate on long chapters since most of the blog posts are under two pages. He writes some about the Dilbert phenomenon, but mostly about the way he thinks. And most important of all, the book made me laugh out loud repeatedly.

He says he considers optimism to be a choice you can make in your life, and that if he wasn't optimistic despite everyone who told him to keep his day job because he'd never make it as a cartoonist, Dilbert wouldn't exist. He calls himself an optimistic cynic and says that every time he enters a contest or plays a game, he fully expects to win, even if the odds are a jillion to one against him.

He says the most of the business ventures he's tried have been failures, but he just kept on trying without letting it get him down and always believing the next one would succeed.

It's a cool concept, and I'm going to work on overcoming my Eeyore tendancies and try to be more optimistic.

Tuesday, November 27, 2007

Slight Nuance

So now that I have a working diagnosis (unspecified connective tissue autoimmune disease), I'm doing what I always do about "big" issues and obsessively researching it.

I did it before I got married. And I did it again when we decided to try to have a baby, and then again after I was pregnant. (How come once you have a kid, there's absolutely no time to read all those child-rearing books you put aside while reading the pregnancy books??)

So now I'm reading about connective tissue autoimmune diseases, and focusing mostly on lupus since that seems the closest to my symptoms even though I haven't officially been diagnosed with it. (Several books and articles I've read say it's not unusual to take as long as 10+ years of being sick before getting diagnosed with lupus! I'm so happy I didn't have to wait that long before being treated!)

Anyway, I had been told that the medication I started on last week, Plaquenil, was an anti-malarial and an immunosuppressant. Turns out, at least according to Lupus: An Essential Guide for the Newly Diagnosed by Nancy C. Hanger, that it's just an anti-malarial.

I'm taking 400 mg a day. If I were using the medication to prevent malaria, I'd be taking 400 mg per week. Some lupus patients take 400-600 mg twice a day.

Anyway, the book says that Plaquenil works on lupus patients by making the body think it has a mild case of malaria and the overactive immune system goes to work on that instead of attacking a perfectly healthy body.

Apparently, this works for the majority of lupus patients. For the few that it doesn't, or who get more serious forms of lupus where the immune system is attacking and damaging organs, then they're put on true immunosuppressants. Ms. Hanger calls the immunosuppressants chemotherapy, which surprised me because I haven't seen references to chemotherapy for lupus treatment anywhere else. But perhaps that's the proper classification for immunosuppressants?


Meanwhile, I'm waiting to get the results of yet more bloodwork. Since early on in my illness, I've been covered in bruises in places you wouldn't expect to get bruised: inner thighs, behind the knees, armpits. I have repeatedly mentioned it to several doctors, but no one was very interested in it. They kept blaming it on the Prednisone I was taking, even on the breaks I took from the Prednisone.

But now I've been off corticosteroids for well over a month. So when I saw my internist last week, I finally made her look at my bruises, including the giant one behind my right knee.

So she ordered a whole bunch of blood tests (and they filled 9 test-tubes with blood) to try to figure out what's going on with me.

Oddly, I tested moderately positive (just below "high positive") on the anti-Cardiolipin blood test, which suggests that my blood would clot more than it should, not less.

So we'll see if they can figure out if those bruises are at all related to the autoimmune disease they currently think I have.

Monday, November 26, 2007

I Don't Like Mondays!

Who was it that did that song in the '80s called something like "I don't like Mondays"? Was it the Boomtown Rats?

I remember getting the album (Remember when there were albums, not CDs or downloads?) and thinking that should be the national anthem of teenagers.

But you know, it still works for me in some ways.

Not all that long ago, I used to long for weekends. In my working days, it meant time to relax and hangout and do something fun. In my SAHM days, it meant that Scott would be around to give me a break from being the primary caretaker all day long and maybe I'd get a chance to do something fun like quilt.

Now I hate weekends, and I feel guilty about it because it makes me feel like a bad mom and wife. And I spend all day on Mondays trying to recover from the weekend, when I feel the need to get up earlier than my body craves and be more active of a parent and spouse.

I guess it's the chronic fatigue aspect of this illness that's the real issue for me, more than the pain. (Although I suspect the pain would be the primary issue once I got rid of the fatigue ... and even with the fatigue, sometimes it's a tossup which is worse.)

So on weekends, even if I don't actually do much, I get more and more exhausted just being around and interacting verbally with Ellie. It sounds so silly, but I literally do get tired just watching her bounce all over the place and be a typical almost-3-year-old.

So while Mondays are an improvement, in a sense, because I'm home alone and can rest and try to build more energy for the following days, I also hate them because I always feel lousy on Mondays. Sometimes even worse than I did on Sunday because Monday is like an aggregate of the entire weekend plus the end of the previous week when I tried to get whatever needed doing done because I know I'll be out of commission until at least Tuesday.

Four more days, and NaBloPoMo will be over and I can go back to blogging when I have something worth saying instead of trying to come up with something that might be worth reading each and every day. :) Thanks to those of you bearing with me through all of this!

Sunday, November 25, 2007

Watchful Waiting

I hate starting new medications. I tend to be very sensitive to drugs, and sometimes it seems like I have every possible side effect on the books, even ones my doctors and pharmacists aren't accustomed to.

I'm exaggerating of course.

But when I start new meds, there is a period of watchful waiting as we wait to see if the medication is helpful or whether it's going to make me feel sicker because of side effects.

So, gee, I've had some twinges of nausea yesteday and today. Nothing bad enough to make me throw up, but enough that I dug out my old anti-nausea medication from my ulcers and took that today.

I also seem to have lost my appetite the past few days. That's not actually a bad side effect in my opinion since I'm well padded and could stand to lose some weight, even if just the 20 pounds I've gained since getting sick in June. (Three months of steroids -- including some massive doses -- just totally did me in.)

Of course, the loss of appetite and nausea could just as easily be related to the virus we're all dealing with in our home for the past week or so, and not even remotely related to the plaquenil I started on Wednesday.

I'm also finding myself even more fatigued than usual. But that could be from having Scott and Ellie home for the four-day holiday. I love my family, but this illness I've got seems to require a lot of solitary quiet time, and that's hard to get when everybody is home. And a four-day holiday weekend was going to be exhausting for me even if I hadn't started the new med. (I have taken naps every day this weekend, but that doesn't seem to help as much as I'd like.)

At any rate, no sign of any bad side effects that would force me off this medication so far. But also no sign of improvement yet either.

Saturday, November 24, 2007

Is It the New Meds, or Just Another Bug c/o Ellie?

So it's Day 4 on the new meds (Plaquenil), and thankfully no signs of any side effects so far. I doubled my dose up to 400 mg this morning, and am hopeful things will continue to go well.

But Ellie has been having cold symptoms for several days now, and suddenly I'm coming down with them too, which makes my normal level of ickiness feel even worse.

Poor me, huh?

Well, not really. It's part of having Ellie in daycare that she is getting lots of extra challenges to build her immune system. And from what I hear, it's totally normal for moms and dads to come down with the bugs their kids bring home from school or daycare. So that's probably all it is. But I'm feeling a little paranoid about every extra ache or twinge, wondering if it's the start of a side effect that will be bad enough to force me to stop the new meds.

I do just wonder though if the new medication is making me extra susceptible to viruses that I come in contact with. Even if it does, it will be totally worth it if it makes me feel better. Ten more days, and I should have a clue whether that's really going to help.


I feel bad about venting yesterday about an acquaintance who stayed longer than was ideal for us. It really wasn't her fault since I didn't speak up, and neither did Scott. I can't expect people to be mind-readers or to constantly be checking in and asking if they need to be leaving now.

I keep telling people that what I want most of all is occasional visitors, so I need to learn to be upfront about when I've reached my limits and need to rest.

So that's something I'm going to work on. Because if I'm ungrateful when people come to visit me, pretty soon I won't have any visitors at all, and that would be really lonely.

Friday, November 23, 2007

Why Is It So Hard To Ask a Visitor To Leave When You're Worn Out?

Still exhausted today, and it didn't help that a friend who I thought was dropping by for a brief visit stayed for over 90 minutes.

I've been pretty straightforward with folks that an hour is about all I can handle socializing with a visitor. Even if I don't talk much, just the extra activity level around me wears me out.

A friend came over today. She had done me a favor and hit the sale at the nearby Hanna Andersson outlet and got me a dress for Ellie at a good price. So she came over with her daughter, who's a few months younger than Ellie, and her 3-month-old baby, who I hadn't met yet.

Don't get me wrong -- it was good to see her, good to see her kids and I was grateful for the cute dress she found in Ellie's size. But she was an hour late showing up (which is understandable with a newborn and a preschooler to corral to get out of the house with) and then we felt funny about making lunch when she and her older child didn't want any, so we didn't eat either even though it was now past our normal lunch time.

I was still worn out from Thanksgiving, and I guess I wasn't really up for a playdate and that's probably the real problem. But as they lingered and lingered, I could tell Scott was hungry too and Ellie was fading fast.

I finally dropped a hint by saying that gosh, it was really getting close to my naptime. And they eventually left, we had our lunch, and then I headed upstairs for a nap.

I know I should have said something sooner, but I didn't know what to say or how to say it politely. She's someone I like, but we don't know each other all that well and I didn't feel like I could just say, "Hey, I've reached my limit, it's time for you to pack up your kids and go." And I probably should have.

Does Miss Manners explain the proper etiquette for these kinds of situations?

Thursday, November 22, 2007

And We Gave Thanks

The only other Thanksgiving that I remember feeling this grateful was the first one we shared with our daughter, Ellie.

I'm beyond exhaustion despite sleeping late and taking a 2-hour nap before our guests arrived for dinner. But having friends over, and especially with their two children, made our holiday meal much more festive.

And it was nice that Ellie had friends to play chase with instead of her daddy. :)

Two doses of the Plaquenil and no noticeable effects yet. Which is actually probably a good thing because I think only undesirable side effects are likely to show up this early.

Off to bed for me. More tomorrow.

Wednesday, November 21, 2007

Call Me Cancer-free!

I'm exhausted and in a lot of pain today, but I've got a huge smile on my face anyway.


The hemotologist finally returned my second message and gave me the good news that my tests look good enough to declare me cancer free without doing a bone marrow biopsy! Woohoo!

And I saw my internist today, and she agreed to start me on Plaquenil, an anti-malarial usually used to treat Lupus patients, right away although she's going to find me a new rheumatologist.

The hemotologist says I need to repeat the blood tests at a minimum in three months to be sure the immunosuppressant doesn't increase my monoclonal cells and develop into myeloma.

But Dr. Takano, my internist, says that if the Plaquenil works its magic on me, I should notice an improvement within a month or so and before I know it, I'll be back to living a relatively normal life. At least until my first flare-up.

She did warn that I was never likely to feel quite the same as I did before getting sick in June, but now I have hope that we will be able to at least decrease Ellie's time at daycare, if not get rid of it entirely.

What a huge relief this all is.

And we definitely started giving thanks for this good news, without waiting for the Thanksgiving holiday to begin!

I hope Thanksgiving is as good for the rest of you as it will be for us. :)

Tuesday, November 20, 2007

More Waiting, and an Update From One of the Airlines

For those waiting with me to hear, there's no news yet from the hemotologist. I have to hope that means it's good news because she would have been very quick to contact me if it were bad news, right?

I hope to hear from her before my appointment tomorrow afternoon with my internist, who I was hoping would be ready to start me on Plaquenil this week. But if the test results aren't back yet, I think she's going to say I have to wait until after the holiday weekend. :(

Earlier this week, I wrote about my frustrations with United and American airlines, mostly with United.

I got an email today from Sara Holmes in customer relations at American Airlines. She says their computer shows a response was sent to me back in August and that it must have been caught in my spam filters or something.

Yeah right. Interesting that that one out of the five emails sent to me went astray when two form-letter confirmations of receipt of my email arrived just fine, as did the resend today of the alleged August email and a new response dated today in response to my post on Sunday.

Edited for clarity, brevity and commentary, the following is from Ms. Holmes:

I was sorry to learn of the health concerns which resulted in a change of your family's travel plans. Our records confirm my colleague, Ms. Moriak, processed a response on August 27 which was successfully transmitted via email to you.

It's interesting that Ms. Holmes can "confirm" the email was "successfully transmitted" to me. Because the return address on all their outgoing emails are to a no-reply address, they would have no way of knowing whether that email bounced. I'm skeptical it was actually sent back in August; call me a cynical ex-journalist.

It is certainly unfortunate you did not receive that document. Various spam blockers can often prevent the acceptance. I have requested a duplicate be processed and it should arrive shortly.

And it did. Just seconds before this email arrived. But she quoted it in its entirety for me in case the duplicate didn't make it either. Again, it's rather interesting to me that all these other emails made it into my inbox just fine, but it's very convenient to blame the absence of the first response on my spam filters.

***** (Quoted from the August email:)
Thank you for contacting American Airlines Customer Relations. I am pleased to
respond. I am sorry you are disappointed that we do not waive fare rules because of illness.

I find this a little interesting because of how clear she is that they do not waive fare rules, including the change fee. However, I know people who are in a higher class of frequent fliers who have had change fees waived happily by both United and American airlines. Apparently the rules differ greatly by whether you have the money to fly frequently (or a job that pays for you to fly frequently). My brother is in one of the elite levels of United's Mileage Plus program, and he told me about a persistent ear infection causing him to have to reschedule non-refundable tickets three times and United waived the change fees for him each time without even requesting a note from his doctor.

***** (Back to Ms. Holmes:)
As you can see, we made an effort to respond and regret it was unsuccessful.
I have reviewed your concerns and although we are unable to waive the fees, I would like the opportunity to review additional options to help ease the financial burden three change fees, due to the circumstances.

That is generous, and I appreciate it. Unfortunately, I don't think I'm confident enough that I'll be well enough for travel by early June, and certainly not enough to put out yet more money to change the tickets and risk losing that money too if I'm either still ill or come out of the remission I pray that I soon enter.

Please notify me of your receipt of this email at your earliest convenience to ensure you receive it and I will respond accordingly. Ms. Brandt, we wish you good health and look forward to hearing from you. Thank you
for contacting American.

I have responded to Ms. Holmes (having to use the blind form on American's website since of course even Ms. Holmes didn't give me a direct email address to respond to) and asked her to call me at home to discuss my situation.

Really, this round at least was a much more encouraging response than what I got initially from American or at all (so far) from United. I did say that what I hope for more than anything else is the ability to either 1) extend the expiration date of my tickets since I won't be able to use them by June and my husband has no desire to fly with Ellie without me or 2) Allow me to donate them to Make-A-Wish by making the tickets transferable.

Monday, November 19, 2007

Waiting and More Waiting

You'd think I'd have learned patience by now when it comes to waiting for test results.

You'd think.

But no, instead I sit here angsting over what the hemotologist will say on Tuesday, and even whether she'll actually get back to me that day as promised or if it will turn out that not all the tests are back in time.

With Thanksgiving this week and people liking to take extra time off, I'm worried that if I don't hear on Tuesday, I won't hear anything until next week.

And the truly silly part about being so anxious (not eager, anxious) for these test results is it's not like they will give me a definite diagnosis.

Most likely, the hemotologist will tell me that she's reasonably certain that it's not multiple myeloma, and then I'll be right back where I started before the rheumatologist sent me off on this wild goose chase.

It's getting very close to December, which will be the six month mark of my illness. I told my therapist today that in my fantasies, I hope that once cancer is ruled out, I'll immediately be put on Plaquenil, react quickly and positively to it, and that by January my illness will be in remission and I'll be able to take Ellie out of daycare.

Yeah, I know that's probably a fantasy and only slightly more likely to happen than us winning Powerball. But I can hope.

Tomorrow. The sun will come out tomorrow.


Sunday, November 18, 2007

Why Aren't Airlines More Supportive Of People With Unanticipated Illnesses?

I know we made a choice when we bought non-refundable airline tickets last March for the trip we meant to take to Chicago in June. And then made the same choice when we bought another set of three airline tickets to Chicago for Labor Day Weekend, because we never imagined I could possibly still be sick three months later.

It was a choice. We chose to save money by buying the cheapest tickets we could find. Even so, we spent about $800 for the first set of tickets and $1000 for the second set, which is awfully spendy for a middle-class family with a young child and a lot of unexpected medical and daycare bills.

We canceled in time that we have credits for those tickets, but they expire a year from when they were purchased, which means the first set expires on my birthday, March 3, and the second set on June 8.

It's clear I'm not going to be able to travel by March 3. Even if I start getting better immediately, we're not going to want to risk a relapse/flare-up away from doctors who know me so soon.

I called United Airlines about those tickets in September. After getting switched to three separate departments, I was finally told to put everything in writing. Complicating the issue is that I checked us in on the Web on June 4 and somehow, when my husband called the airline to cancel our tickets on June 5, the person he spoke to only canceled our return flight. Somehow, United thinks we actually flew to Chicago on June 4. You'd think their computer system would be able to tell that our boarding passes had never been scanned at the gate. And that the headcount the flight attendants do would have been short at least three people. But no, their computer says we flew to Chicago, so we must have flown to Chicago.

I sent my letter in mid-September, explaining my situation and including a note from my doctor about my ongoing illness. I asked if, under the circumstances, they would consider allowing me to transfer the tickets to my brother's family so they could fly to visit us since we couldn't fly to visit them. If that was impossible, could they at least extend the expiration date to allow me time to heal?

Weeks went by with no reply. Finally, two months later, I get what looks like a form letter reply that essentially says the rules are the rules, and that's that. No extention of the expiration date. No transfer to another party. So sorry about your circumstances, but we won't even consider making an exception.

As much as that reply frustrated me, at least they responded. I wrote to American Airlines first, asking them to waive the $100 change fee as the reservations clerk told me they often do if provided a doctor's note and also whether they would consider extending the expiration date. What did I get back? Nada. One email acknowledging receipt of my letter and saying that response time could take up to two weeks. Of course, the email had a no-reply return address.

Back in September, I still had hopes we might be able to use the credits on American. My cousin's twin daughters are having their b'nai mitzvot over Memorial Day weekend, and we really wanted to be there for it. But Scott says he wants me to be healthy for six months before we travel anywhere, possibly longer depending on the condition my remission leaves me in.

It kills me that we essentially threw away almost $2,000, especially when money is so tight these days and our budget is much too far in the red.

I thought perhaps someone else could benefit from these tickets. I called the folks at Make-A-Wish Foundation since I know they have relationships with both airlines allowing their frequent flier miles to be donated, and I hoped they could pull strings I couldn't since it would be for charity.

But no. The Make-A-Wish folks say the airlines won't make exceptions for them either when it comes to these non-refundable tickets. I wouldn't even care if the airline got the tax deduction for it, I'd at least feel good that our loss was a sick child's gain.

So much for the friendly skies. I guess they're only friendly to healthy people.

Saturday, November 17, 2007

Out Of The Mouths Of Babes

it was just past bath time and Ellie was in a fresh diaper for the night and fresh clothes.

We were all in her bedroom, just goofing around a little. Somehow, she ended up straddling my legs, which were stretched out in front of me. I jiggled them to make her bounce, which made Ellie chortle gleefully.

When I stopped, she pleaded for more.

Finally, after several rounds, I said, "OK, that's all. Mommy's pooped!"

Ellie looked at Scott and then back at me. "Does Daddy need to change Mommy's diaper?" she asked.

Friday, November 16, 2007

Are Apologies Ever Really Enough?

I hurt a friend today.

Well, yesterday really, but I didn't read my email and find out until today.

She had innocently sent out a mass email about a local school's project selling wreaths and evergreen swags, telling people that if they wanted to place an order but didn't have a child in the school system, that they could put her son down on the form and then pick up their order at her home.

I don't know what it is about Christmas that makes me cranky. I'm Jewish, and it's not that I resent Christians their holiday. It's just the way Christmas is so pervasive anywhere I go in public (other than synagogue), and it starts earlier every year.

So, without thinking, I emailed back to my friend a little rant about how I felt that public schools should not be promoting Christmas items as a fundraiser, and that if I had a child in the school system, I would seriously be considering sending a letter to the school board in protest.

I guess I didn't really read her email very closely because I didn't notice that the program doing the sale was the community transition program in the school district. The program is for kids with disabilities who are 18-21, and it tries to simulate and create work opportunities through the greenhouse. And it's certainly true that greenhouses trying to succeed as a business are going to sell things like wreaths and evergreen swags at Christmas time.

I just thought it was a fundraiser for the school district. And I feel strongly that even though there are many people who claim Christmas is a secular holiday in this country, it really isn't, and part of the separation of church and state in the Constitution means the celebration of Christmas doesn't belong in public schools.

Yes, the pagans had winter solstice festivals during what's now the Christmas season long before Jesus was born, but the widespread celebration of the holiday is based in the Christian religion.

Anyway, I thought my friend would understand that it was just my usual anti-Christmas rant, and I made a little joke about just calling me the Grinch, and thought that was that.

But this is a program that her son and his peers participate in, something I would have realized if I'd read her email closer instead of just wondering what the CTC on the flyer referred to. And those kids deserve any support they can get.

I wasn't serious about my threat to write a letter to the school board. I didn't even realize it was a threat. But my friend knows how little support her son and his peers get from the school system, and she saw it as a threat that would cut funding from one of the few programs that her son and his peers really benefit from.

I've already told her, in email and in voicemail, how sorry I am. She has already apologized for the angry email she sent yesterday immediately after reading my response to the wreath order form.

But as a wise man I saw on Oprah said that it wasn't enough to admit a mistake and apologize for it. To really show you want to overcome the hurt you inflicted on a person, you need to ask how you can make it right, and do what the hurt person requests. I hope my friend will give me the opportunity to make things right.

And it's a good lesson for me about learning tolerance and not being so quick to condemn programs like this one when I don't know the details.

Although I grew up in a very Jewish area where our public schools closed for Jewish holidays like Rosh Hashana and Yom Kippur, I now live in a city with far fewer Jews. And I'm in an interfaith marriage, trying to raise our little girl with Jewish traditions. I've got a lot to learn.

I'm not sure how I'm going to make things right to my friend, but I hope she is willing to help me find a way.

Thursday, November 15, 2007

So What's That Funny Looking Jug In the Fridge?

Well, there's a first time for everything!

First, the good news. I saw the hemotologist oncologist for the first time yesterday and she, as the expert, says she thinks it's highly unlikely that I have multiple myeloma. She says the level of monoclonal proteins in my blood is relatively low and that she would expect to see other issues popping up in my complete blood count if I really had cancer.

Just to be sure, she is running some blood tests that are more sensitive than the ones I have already had. She's also having me do a 24-hour urine collection that they'll do the same electrophoresis on as they did on my blood to see if the monoclonal cells are in my urine too.

That explains the funny orange jug in our refrigerator! (Ellie found it very entertaining to watch me pee into the white collection bowl and then pour the urine into the orange jug. I then showed her the level of urine that you could see through the side of the jug and told her, "See, that's all the pee-pee Mommy made today!"

Meanwhile, I went to the hospital today for a "metastatic skeletal survey," which essentially was 15 to 20 x-rays of me from head to toe lying on my back and then again on my profile. I and most people I told about it were surprised that it was a series of x-rays and not a bone scan, MRI or CT scan.

Here's an explanation I found on the Web:

Bone scan is more sensitive than skeletal x-rays in detecting bone metastases and in assessing the overall extent of disease except in multiple myeloma, renal cell carcinoma, and thyroid cancer where many lesions are purely lytic without the new bone regeneration detected by bone scans. A bone scan (or skeletal survey in myeloma) should be performed when pain suggests metastatic disease. Bone scans do not provide detail of the structural lesion in the bone; for this reason, x-rays should be obtained of abnormal areas of tracer accumulation detected on the bone scan. In particular, painful areas and those in weight-bearing bones should be x-rayed.

Anyways, apparently they have their reasons for sticking to x-rays when checking for myeloma.

If all the tests come back looking good, Dr. Simic says I won't have to undergo a bone marrow biopsy. While I'm certainly willing to do it if that's what it takes to be sure I don't have cancer, I'm very happy at the prospect of missing out on that joyful experience. She said she would try to call me with test results next Tuesday.

So, while I would very, very much like to get a diagnosis so we can start treating this illness with more than narcotic painkillers, multiple myeloma definitely isn't a diagnosis I would mind missing out on.

Once I'm cleared of the cancer threat, I assume I go back to my internist, who said she'd be willing to try me out on Plaquenil, a immunosuppressant that is used to treat Lupus. If we don't see any improvement after I'm on Plaquenil, I'm not sure where we go from there. I guess fibromyalgia and chronic fatigue syndrome are possibilities ... but I'm going to try not to worry that far ahead of myself.

Wednesday, November 14, 2007

What Would I Do Without My Mommy Friends?

Before I had Ellie, I was finding it hard to make friends of my own.

I liked my co-workers at the Portland bureau of the AP, but as a part-timer, I often wasn't included in the occasional trips out for a beer if only because I wasn't there when the plans were made. So I didn't see much of them socially.

I felt fortunate that when I moved to Portland (and really, before that, whenever I was in town on weekends), I was embraced by Scott's friends and generally included when he was invited somewhere. But none of "my" friends lived locally.

Even at my baby shower, as I made introductions among the women who came to celebrate with me, they were all people I'd met through Scott. (My co-workers threw me a separate shower.) I remember wondering what that said about me that I didn't have "my own" friends.

Then I had Ellie. And suddenly I was getting to know other new moms, and becoming friends solely on the basis of our having infants about the same age. I didn't have a lot of faith that those friendships would last longterm, especially once the kids were old enough for preschool and would go in different directions.

I'm so happy that my cynical side was wrong!

I've been sick now for a little over five months. Longer if you count from my first case of pneumonia at the end of March, which I never fully bounced back from. So I've been mostly missing from playgroups and other activities, such as MOMS Club and classes at the community center, since last spring.

And it's true that I don't keep in frequent contact with some of the moms I used to hang out with.

But many of them are still making a point of including me in their lives. Yes, I'm not there for the weekly playgroup get-togethers and spur-of-the-moment activities. But they keep in touch by email and telephone and occasional visits. I feel slightly out of the loop when they talk about recent events, but they catch me up as they can.

And one group of mommy friends has made a point recently to have a monthly get-together, without the kids or husbands. We used to occasionally do those in bars or restaurants, but out of consideration for my illness, we're staying in instead of going out. And they come out of their way to pick me up and take me home so I don't have to choose between seeing my friends and taking my painkillers. Many thanks to Barbara, Allie, Molly, Meg and Stacey for making me feel like I'm still part of the gang.

Another two mommy friends that I used to meet weekly for a small playdate have also been great about keeping in regular contact. They've made some weekday visits with their children while Ellie was in daycare, but they're planning to come over this weekend so our three kids can have their first playdate in a long time.

I guess I don't know whether it's really any different that I'm now acquiring friends through Ellie and previously I acquired friends through Scott. But it feels different, especially since I've known most of these women since our children were infants and our so-called playgroups were entirely about the mommies and just slightly about the babies.

And at this point, I feel blessed by all my friends, whether I got to know them through Scott or Ellie or they date back even farther and I met them on my own.

Tuesday, November 13, 2007

Why Aren't All Schools Like Catlin Gabel?

On Sunday, we attended an open house at Catlin Gabel, the most amazing school I've ever visited.

Admittedly, I don't have a lot of exposure to private schools. I'm the product of some of the best public schools in the country, and I never saw the need for private schools except as a place for the rich to socialize only with other rich people.

But since becoming parents, Scott and I have paid more attention to the problems in Portland Public Schools, and we want more for our daughter. The neighborhood we live in has schools that are rated "strong" by the state, the middle grade possible.

Ellie would probably do fine in those schools. She has two highly educated parents who are already encouraging her love of books. I'm sure she would get good grades at those schools, score decently on the SATs and get into a decent college.

But Portland Public Schools have cut out so much beyond the basics of education. Many schools don't have a formal art or music program for the students. The choices of electives in the high schools are limited.

We feel like every child deserves more than that, but the only one we can really make choices for is Ellie. So we've looked seriously at moving to Lake Oswego, where the public schools are outstanding. And we've dreamed of Catlin.

The campus itself is beautiful, and reminded me of what I'd expect to find at a small liberal arts college. Lots of buildings but plenty of open spaces on the 55-acre campus.

And boy, do they have everything. Foreign language studies start in first grade, when children are exposed to French, Spanish, Mandarin Chinese and Japanese. They then choose which language they would like to study. In 10th grade or so, the students travel to the country of the language they have been studying to see it first hand. Wow.

And the students study subjects across multiple disciplines. Our fifth-grader tour guide described recent studies in which she and her classmates focused on paper towels. In science, they did experiments to determine which brand was the "best" paper towel. In math classes, they used spread sheets and databases to manipulate the data and highlight different points. In English class, they composed letters to the president of the company they had chosen as the best paper-towel maker.

Catlin believes in encouraging students to choose their own way of demonstrating their learning. We saw a display of fourth-graders' book reports on a bulletin board in the Lower School. Some students had written reports. Some had made dioramas. Someone had created a mock front page of a newspaper. Others had done art projects about their books.

I can't even begin to describe all the things I found wonderful about this school. It was more than the low student-teacher ratio. It was in the enthusiasm and excitement and attitude that the teachers displayed. (All the teachers were in their classrooms, available to talk to parents who stopped by during their tours.)

It's going to break my heart if the only reason Ellie doesn't get to attend this school is because of our finances.

The odds are against her anyway -- I think Catlin only accepts about a third of the students who apply. And while our income is technically within the range that they say they have given scholarships to families, we're near the top of it which means even if we get some financial aid, it's unlikely to be enough that we can really make it happen. At least, without giving up our savings for retirement and Ellie's college education. And that isn't a trade I'm willing to make.

We've talked about my getting a job solely to provide enough income to pay for tuition at Catlin. But I worry that with a chronic illness, it will be harder for me to get and keep a good job. And if I'm working fulltime, how can I volunteer in Ellie's classroom?

We all want the best for our children. And for us, this means really wanting Catlin Gabel for Ellie. We'll see if we can make it happen.

Monday, November 12, 2007

Parenthood Is All About the Guilt

Why is it that the longer you're a parent, the more things you have to feel guilty about?

I realize that no one gets a perfect childhood. And since becoming a mommy, I've discovered that even the moms who seem to have it all -- great kids who do what they're told and sleep well, partners who really help out and co-parent and (my biggest envy) the immaculate, beautifully decorated home -- even they have parenting issues they feel guilty about.

One of my favorite comics recently had a strip about it:

But even laughing over it doesn't stop my guilt.

I feel bad that Ellie isn't getting the introduction to school that I wanted for her, an excellent preschool run by our synagogue where she would have attended three days a week for just 2.5 hours a day. Instead, she leaves home by 6:30 a.m. and doesn't get home until a little before 5 p.m., sometimes later. And instead of loving school, she insists she doesn't have any fun there, she doesn't have any friends there, and she doesn't want to go.

I know that's not all true. They do tons of art projects, which she loves. She does make some friends (and even got invited to one girl's very small birthday party). But one of the problems is that as soon as she gets attached to a child, that child gets potty trained and moves up into the "preschool" class. And Ellie is not at all interested in becoming potty trained.

But I loved school. In fact, I was happier there than at home when I was a child. I was even one of those kids who dreaded summer because I missed school! And I really wanted to share that love of school with Ellie and get her off to a good start at enjoying school and learning.

I know that if it weren't for this illness that's defying diagnosis and won't seem to go away that there would be plenty of other things for me to feel guilty about. It seems to be one of the after effects of giving birth that no one warned me about.

Sunday, November 11, 2007

The Things You Learn

Last time I saw my internist, we were talking about the pain I have in my hands and other joints.

We were both examining my fingers and she was pressing on the knuckles (which hurt!), and I told her I really didn't understand why they were so painful when I haven't ever noticed any redness or swelling like the rheumatologist kept asking me about.

So she told me that was the difference between, say, Rheumatoid Arthritis and Lupus. With RA, you get the visible swelling, redness and the skin can be hot to the touch. With Lupus, you get the same amount of pain, but nothing shows on the outside.

I have to say, sometimes I really wish something about this illness showed on the outside.

The other funny (odd) thing during that visit was when she went to examine my ankles. I didn't know there was anything wrong with my ankles, although my toe joints had already begun to hurt. But man, she pressed on two sides of my ankle and I almost jumped out of the chair.

I guess I have ankle pain to look forward to because when she did the same thing to my elbows before I'd noticed anything wrong with them, they started aching badly within the next couple weeks. *sigh*

Life goes on.

Just a few more days before I see the hemotologist. And I better not get another round of stomach flu to make me postpone it again!!

Saturday, November 10, 2007

Accepting Freely Offered Help With Grace

I think one of the hardest parts for me about being sick is that I can't do all the stuff I want and need to do by myself anymore.

I need help. And I've never been good at asking for it, nor at accepting it. But I'm learning.

Most of the burden falls on Scott, who should win the Olympic gold medals for husbands and daddies. Both our families have also tried to help as best they can.

But that's the definition of family and good friends, right? People who help you when you need it, whether you ask for it or not.

But there's also been so much help from people outside my immediate circle.

First there was the support services folks from my MOMS Club chapter, who organized meals for us from volunteers. Many of these women who brought us food (that usually lasted for 2-3 meals, not just one!) were women I barely knew or even had never met face-to-face. But that didn't matter to them. I was a member of the club in need, and that's all that mattered. Many of them also took time to stay and chat if they could.

Ironically, shortly before I got sick, I had started discussing with the membership director at our synagogue, Congregation Neveh Shalom, that we were having trouble forging connections and would like to find new ways to get involved. We liked the clergy and staff, but we had trouble connecting with other people beyond just a small handful.

When they learned I was so sick, they reached out by phone and in personal visits. Cantor Linda Shivers made a personal visit to our home to sing Kol Nidre to me for Yom Kippur because I was too sick to go to High Holy Day services. That was so amazing -- this incredible soloist singing in a private concert in our living room! Our new Associate Rabbi Brad Greenstein made a personal visit just days after his daughter, his first child, was born. (Boy, he looked more tired than I felt!!) Several members we didn't know previously reached out too -- Barbara Barde and Jenn Knudsen in particular -- and have gone out of their to help us out. Another woman offered her young daughter's services for free babysitting. And Jan Skolnik, the director of the synagogue's high-in-demand, wait-listed pre-school, offered to hold Ellie's place for the entire first term (at no cost to us) to give me a chance to get better. Wow!

I also have a large "playgroup" of women who all met when our children were infants at a local hospital's "new moms" group. Our group has just continued to grow as our kids grow, and we maintain a Yahoo list to keep in touch and organize weekly playgroups at various homes and venues. A bunch of the moms have their second babies now! One of the women, Kristi Buxton, organized a meal train program both for me and for all the moms with newborns in the group, and we received at least one meal per week for three months. Wow! Sure, I'd always liked Kristi when our paths crossed, but we weren't close friends. Now I feel like I know her so much better, and she definitely knows me a lot better too! And that's true of so many of moms in that group, who have made time to cook for us and (even more importantly to me) made a point of visiting for a little while when they dropped off the food to help alleviate the isolation I feel stuck sick at home all the time.

And thanks to my other playgroup, which was an offshoot from my MOMS Club chapter but is no longer officially affiliated with it, who unanimously agreed to change our occasional Girls Nights Out into Girls Nights In so that I can attend and feel like a regular person with a social life once a month. Not only that, but they all volunteer to either pick me up or take me home so I can attend without having to suffer without pain medication. (I feel very strongly about never driving on narcotic pain killers.)

And then there's all the people -- some of whom I only know via the Internet -- who have put me in touch with someone they know who also is suffering from a chronic illness like Lupus. These FOFs (friends of friends) make time to email me and tell me their stories of the long path to a diagnosis and treatments that work. And they keep in touch, providing me with a support group of sorts.

Oh, and then in a category by herself is our friend Bari Gilbert, who was like 3 days away from giving birth and already had three little ones at home. Bari spent the last couple days before delivering calling daycare centers for me to help us find a good place for Ellie. (Bari's just amazing. A week after her c-section, she was hosting a birthday party for her 3-year-old daughter at a neighborhood park. I wasn't there, but Scott says he didn't see her sit down once in the 90 minutes he and Ellie were there. Wow!!)

It's just mind-boggling!

And with all that these people are doing for me, I just have to learn how to say "yes, thank you!" more often. And accept gracefully their kind offers, particularly when they make it clear that helping us is something they want to do.

And I am learning. When Jenn K. emailed to say she was bringing us a meal next Tuesday and to let her know if the day/time was bad but that she was bringing a meal -- I simply said thank you and how much I'd look forward to seeing her again.

Wow, I probably should have saved this post for a Thanksgiving post since I'm giving so much thanks to all the people who care enough to reach out to help me and my family. :) But hey, I'm sure I'm forgetting plenty of people I should be mentioning so maybe Thanksgiving Day will be Part Two of this post.

Friday, November 9, 2007

Secrets of Adulthood

I found this at The Happiness Project. I'm not 100 percent clear whether this was originally written by Gretchen Rubin, or whether she found it somewhere else and didn't credit it on her website. (I'm assuming, as a writer, she would have credited it if it were written by someone else, but you just never know. And it's also possible there was a credit there that I missed too.)

Anyway, I thought it was brilliant, and well worth sharing (with a little commentary, of course. :)

Secrets of Adulthood

People don’t notice your mistakes and flaws as much as you think. (I didn't really learn this one until I started quilting. My mistakes just jump out at me, but until I point them out to non-quilters, they almost never notice them!)

It’s easier to prevent pain than to squelch it. (This one hit home with my two shoulder surgeries in the late 1990s. The first surgeon let my pain get out of control at the start and we never did get it reined in. The second surgeon, Dr. Richard Kirby of Seattle, got my pain under control from the start and it never got as bad as the first round and I healed much better and faster.)

Where you start makes a big difference in where you end up.

Don't let the perfect be the enemy of the good. (Flylady taught me this one!)

It's nice to have plenty of money. (Money may not buy happiness, but it sure can make it easier to avoid a lot of unhappiness.)

Most decisions don't require extensive research. (Take it from someone who over-researches just about everything. Your gut reaction is almost always the right decision.)

If you want to talk to someone, stand next to that person while he/she finishes another conversation; in time that person will turn to speak to you. (I think it also helps to put yourself in that person's field of vision. If you're next to them and they don't see you, they may turn in another direction when the first conversation is over.)

Try not to let yourself get too hungry. (Boy is this one true! And for many people, this means eating something small but nutritious every 2-3 hours and not just at 2 or 3 big meals a day.)

Even if you think they are fake holidays, it's nice to celebrate Mother's Day and Father's Day. (But celebrating them doesn't have to mean spending money. Gifts and cards and meals in restaurants shouldn't be required to show your appreciation.)

If you can't find something, clean up. (This almost always works! And even if it doesn't, at least your home is neater!)

The days are long, but the years are short. (Boy, this really became true for me once Ellie was born. It seems like I just blinked and she went from being a newborn to being a preschooler!)

Someplace, keep an empty shelf. (Yeah, well, I haven't mastered this one and I'm not entirely sure why it's a good idea, except it means you don't have to give away books when you buy more ...)

Turning the computer on and off a few times often fixes a glitch. (I still don't understand why this is true, but it almost always works. At least on Microsoft operating systems. My MAC-user friends don't seem to have this issue nearly as often.)

It's okay to ask for help. (And even when you don't think anyone will help you, it's amazing the people who come out of the woodwork of your life to help you out when you really need it. This illness has taught me that more than anything else!)

You can choose what you do; you can't choose what you LIKE to do. (And sometimes what you like to do changes over time, so something you once loved becomes uninteresting while you find new interests or hobbies that become your passions.)

Happiness doesn't always make you feel happy. (I'm still pondering this one ...)

What you do EVERY DAY matters more than what you do ONCE IN A WHILE.

You don't have to be good at everything. (I still have trouble accepting this one in some respects.)

Soap and water removes most stains. (But sometimes it takes a lot of soap.)

It's important to be nice to EVERYONE.

You know as much as most people.

Over-the-counter medicines are very effective. (Sometimes true, but not always for me.)

Eat better, eat less, exercise more. (I know this one is very true, but I have trouble putting it into practice. And more so now that I'm so inactive from this illness.)

What's fun for other people may not be fun for you--and vice versa. (And it's perfectly OK for your life partner to enjoy things you don't and vice versa and still be your soul mate. Time alone to pursue one's hobbies and interests helps keep a marriage/relationship strong. You don't have to do everything together.)

People actually prefer that you buy wedding gifts off their registry. (Boy, I didn't learn that one until I got married myself. Some of the off-the-registry gifts were lovely, but some were just so weird and not us that they ended up at Goodwill!)

Houseplants and photo albums are a lot of trouble. (I sure wish someone had told me this before I learned it on my own!)

If you're not failing, you're not trying hard enough. (Always set your goals higher than you imagine you can possibly reach. You won't reach the goal, but you'll get farther than if you'd set a more easily reachable goal. It sounds like a truism, but I learned this one very young and it's always been true for me.)

No deposit, no return. (If you don't invest yourself in something, you're not likely to get anything out of it.)

Now go check out The Happiness Project for yourself. Lots worth reading there! (And many thanks to Amy D. for telling me about it !)

Thursday, November 8, 2007

On The Mend

Well, I'm happy to report that both Scott and I are on the mend.

He came home after just a half day at work yesterday (mostly to take care of me, but he needed the nap too). But today he's back at it, and I'm doing better than yesterday too.

It was such a blessing to be able to have Ellie at daycare while Scott and I tried to get control over our stomachs and to catch up on the sleep we missed Tuesday night.

Still not quite back to "normal," but it's nice to be feeling a bit better. And hey, I lost 5 pounds. :)

Wednesday, November 7, 2007

Well, So Much For That Plan

Well, I had to reschedule my appointment with the hemotologist.

Ellie got sick with a tummy bug Sunday night, but when Tuesday rolled around and Scott and I were still healthy, I thought we'd missed catching whatever it was she had.


I lost track of how many times I threw up during the wee hours Tuesday night/Wednesday morning. And Scott was pretty much up all night with his own problems. Uck.

So now I don't see the hemotologist until Nov. 14, which means yet more waiting. But I couldn't even get dressed today much less drive myself to the doctor's. And everytime I tried taking pain pills, I threw them up too. Definitely not a fun bug to have. :(

Ironically, when I saw my internist on Tuesday, she asked me if there was any chance I was coming down with a bug that would be the cause of my feeling so much worse lately. I said no, but it sure looks like she was right!!

Tuesday, November 6, 2007

Trying Not To Worry

I keep thinking tomorrow is "the big day" because I'll see the hemotologist and discuss those scary test results that showed the monoclonal immunoglobulins.

In my fantasy, we'll be able to resolve it all tomorrow and I won't have this scary possible diagnosis hanging over my head any longer.

In reality, I know it's going to take weeks if not a couple months before I get a definitive answer. I'm sure there will be blood tests and possible x-rays and/or a MRI followed by the bone marrow biopsy, which I've been dreading.

Meanwhile, Ellie got sick Sunday night and threw up at least four times, so even though she seemed better in the morning, she couldn't go to daycare until she'd been "vomit-free" for 24 hours. I felt like such a bad mom because I spent all morning and part of the afternoon hiding in my bedroom because I was in so much pain that I needed quiet time.

Adding to my problem was that I couldn't take pain medication in the morning because I had a doctor's appointment in midafternoon and I needed to be able to drive myself there safely. I feel strongly about not driving when I've taken narcotic pain relievers -- I think it's as bad as driving after a few drinks, which I also don't do.

On a positive note, I liked the psychologist I met with yesterday. She was a good mix of being a sympathetic listener and wanting to help me set some goals.

And she understood my desire to blog, unlike the first therapist I saw, and said she thought it was wonderful that I'd found this outlet.

More waiting ...

Monday, November 5, 2007

Over the Hump

So depending on which newspaper you read, the so-called "7-year itch" is now happening at just 3, 4 or 5 years into a marriage.

See this article for more information about the study or google "7-year itch" and find lots more articles.

Since Scott and I celebrated our 6-year wedding anniversary in September and are going on to 13 years (!) as a couple, I guess we're over the hump! We're also breaking the theory that says that second marriages are even more likely to end in divorce.

Just interesting theories. But it's nice to know that I don't have anything extra to worry about on that front next year. :)

I did choose our wedding date (9-2-01) in the hopes that getting married on what would have been my grandparents' 73rd wedding anniversary would bring us luck and encourage longevity in our marriage too.

Sunday, November 4, 2007

Babysitters Are Brilliant

I used to be really active in a local MOMS Club chapter, and when I first got sick, they were great about pitching in and bringing meals for my family. That was a huge help as Scott adjusted to essentially having to do everything around the house. (He'd always done the lion's share, but now he does everything it seems like.)

There's a person who volunteers to run the chapter's "support services," which usually focuses on organizing meals for moms with newborns but also helps those with serious illnesses. The person doing the job in our chapter offered lots of kinds of help. I was too embarrassed to take her up on the offer of having other moms come clean our house, but I asked her to help me find a babysitter.

She contacted various organizations -- schools, churches, etc. -- and came back to me with a couple names. I was looking for someone who was willing to make a commitment to come every weekend for 3 hours or so and who could provide their own transportation. The babysitters other people referred me to weren't willing to make that commitment, but Mairi-Kate found a senior at Tigard High School who was.

So every Sunday, from 2 p.m. to 5 p.m., Angie comes by to play with Ellie, something Ellie looks forward to all week long.

Although I'm sometimes tempted to go take a nap, I stick around and offer suggestions for activities and find things they need. But Ellie loves having someone to "play chase" with and Angie is very artistic so Ellie loves to do art projects with her.

The best thing is it gives Scott a break. He gets to go off into his garage and do woodworking. (If you want to see some of his older projects, they're at The site hasn't been updated lately, but it's still a good view of his hobbying.)

If it were me, I'd probably be relaxing instead of tackling a wood project, but it really seems to re-energize him and put him in a much better mood.

Since I don't feel up to quilting these days, using my hobby funds to pay Angie $20 a week and give Scott a badly needed break seems like a bargain.

Saturday, November 3, 2007

A Book Is a Book, Except When It's an Escape

If I'm awake, there's a pretty good chance I have my nose in a book.

I've always been a reader, but I read even more frequently since I got sick. It doesn't take a lot of energy to read a book, and if it's engrossing, I can forget, for a few minutes or longer, about all the places I hurt and how tired I am.

Books make me feel better.

I'm fortunate that I live in Multnomah County (Oregon), where the public library has a service to deliver books to the homes of people who are too sick, too old, too whatever, to be able to get to the library themselves. So every other month, a friendly person brings me a crate full of books that I've put on reserve online. I can have up to 40 holds, which isn't quite enough to keep me for two full months, but it's a damn good start.

I worry sometimes that my husband resents that I'm always doing something "fun" when I have my nose in a book, while he spends virtually all of his waking hours doing some sort of work, whether it's the kind he gets paid for or the kind that keeps our household functioning. He doesn't get many breaks, nor many escapes. It's definitely not even close to "fair."

But then, I don't think there's anything "fair" about the way chronic illness affects the family members of the person who is sick.

But give me a good book, and I can forget about all that for a little while.

Friday, November 2, 2007

What On Earth Was I Thinking??!

It was Halloween, and Ellie chose one of her fairy princess outfits to wear for trick-or-treating. And she's just so cute as she flaps her arms (and says flapflapflapflap) and insists that she's flying. She's just irrestible.

And of course, she was very excited about trick-or-treating.

Scott was going to take her to Washington Square Mall, where she wouldn't have to wear a coat over her cute costume and where we wouldn't have to worry about the candy she received being tampered with by a crazy.

And I just couldn't resist, so I went too.

It sounded like a good idea. We parked in handicapped parking, as close to the door as you could get. And I walked with them for the first few stores and then found a chair to sit in and wait for them while they did more trick-or-treating.

Scott and I had walkie-talkies, so when he told me they were getting close to me but one aisle over, I got up to go look for them. Unfortunately, that part of the mall had fewer seats and all of them were taken.

We had talked about having dinner in the food court, but I knew I couldn't face the long lines, so we headed for home and stopped at Subway for semi-healthy sandwiches.

When we got home, we walked next door to visit Auntie Joan. I thought I could manage that because we'd go inside and I'd collapse on a chair while Ellie showed off her pretty fairy costume and Joan made a fuss over her. Instead, Andy was very sick and Joan didn't look completely healthy either, so we stood on the porch for longer than we should have before going home.

Scott was ready to go visit the other neighbors we're friendly with, but by that point I knew I'd crossed the line somewhere along the way and I needed to lie down.

I couldn't even make it up the stairs from the garage without stopping to sit down twice. By the time I got to the kitchen, Scott and Ellie were already upstairs for Ellie's nightly bath, so I climbed another flight of stairs and collapsed in bed.

I spent most of Thursday in bed too, only venturing out when hunger finally won out over exhaustion and pain. I'm a little better today, but still far worse than I was the day before Halloween. I'm definitely not bouncing back from the excursion.

I knew I shouldn't go to the mall, but Ellie was only ever going to have one Halloween when she was 2. Last year, she didn't understand what was going on and was afraid of the people who wanted to put things in her Disney Princess basket. This year, she was great at holding it out with a big smile, although she still had to be prompted to say "Trick Or Treat" and thank you. (And usually whispered them so the people handing out candy couldn't really hear ...)

So, what was I thinking? I guess I was thinking that I love my daughter and I'm tired of feeling like I'm on the fringes of her life.
But honestly, I'm not sure I would have gone if I'd realized that I was still going to be feeling so bad two days later ...
On the other hand, she was so happy when I said I was coming too. And maybe overexerting myself and paying the price for it is worth it to make a little girl so happy.

Thursday, November 1, 2007


I always wanted to participate in National Novel Writing Month. The idea is that you write 50,000 words in 30 days (the month of November). You can sign up to participate at NaNoWriMo. It doesn't even really matter if you have a plot, you just commit to writing an insane number of words. And if you want, you can submit your work of art and the winning "book" is published.

I've tried a couple times to participate, but one of the mantras most people need to complete the project is to forget about editing themselves. Just write, and keep writing. Don't go back and tweak the phrasing to make it better. Don't go back to add foreshadowing. Just keep writing. Me, I seem to keep reworking the first few chapters and have never gotten past 10,000 words.

As I understand it, although the piece produced during NaNoWriMo might not be destined to be a best-seller, simply completing a 50,000-word piece is a huge accomplishment. And doing it once, in NaNoWriMo, might convince an aspiring author that s/he can complete a book someday, even one that's readable!

Well, this year, I'm not even going to try to write 50,000 words. But a goal I'm willing to at least try is NaBloPoMo, i.e. National Blog Posting Month. Basically, that means I'm pledging to make one post per day for the month of November. I'm sure I'll find something to blather about, but let's hope I can even make it interesting to read. :)