Tuesday, January 29, 2008

Gratitude List

One of the women in my Living Well class does a Gratitude List every day, listing 10 things or people or ideas or whatever that she's grateful for. Her rules for herself include that she cannot repeat an item on the list within the week, so she must have at least 70 unique things she recognizes that she's grateful for each week.

It's something similar to what I've read on The Happiness Project, which often inspires me but I so rarely take the time to do what she suggests. (Thanks again, Amy D., for telling me about it! I love getting it in my email inbox every day.)

So, here and there, I'm going to try to note the things I'm grateful for in the hopes that it will remind me that things could always be worse.

I'm grateful for:

1. My husband, Scott, who took his vows seriously when he promised to hold me and keep me in sickness and in health, for richer and for poorer. These days I know we're seeing a lot more of the sickness than the health and the poorer than the richer, but he never complains or says he regrets choosing to marry me.

2. My daughter, Ellianna. When Scott and I got together (back in May 1995!), we weren't planning on having a serious relationship. And then when it was obvious we were having a serious relationship, we both still agreed we preferred our life child-free. We were very firm on that point to the premarital therapist we saw. I hate to be a cliche, but we changed our minds and eventually Ellie brought a whole new depth to our lives. I'm so grateful that she's already here because I fear that if we had to make the decision about having kids now, with my illness as bad as it is and has been for months, that we'd decide we couldn't afford a child and that I couldn't parent one.

3. Family and good friends, who have reached out and been supportive to the best of their abilities. It takes special people to recognize that even though I look or sound perfectly healthy, sometimes I'm barely holding on by my fingernails.

4. The Multnomah County Library, which offers this wonderful service to people who can't get out to the library regularly and they will deliver the books to your home. You can put holds on up to 50 or so books at a time, and they will come every other month to take away the old ones and deliver the new batch. Before signing up for this service, I kept missing my holds because I wouldn't be able to make it to the library branch during the week they were there and sometimes Scott couldn't get there either due to work schedule. This really took care of the problem. (And the coolest part? They don't require a doctor's note or anything other than your saying you need this service. I've told Scott that when I'm better and money is flowing a little better, this is a place I really want to donate because it certainly has made a difference in my quality of life.)

5. My internist, Dr. Lina Takano of The Portland Clinic. She has always been supportive and done her best to try to make me better. She never doubted me or questioned whether I was malingering. She recognized that this was beyond her specialty and has sent me to some of the finest specialists in the city. She does a great job of managing my case despite being incredibly overworked at the clinic.

6. Rheumatologist Dr. Richard Wernick, who spent hours with me on my first consultation and who I believe stands the best odds of figuring out what's wrong with me.

7. My mommy friends who even after all these months make a point of finding time to come visit me and are understanding about the fact that I don't tolerate long visits very well. (I get exhausted after 45-60 minutes.)

8. Our synagogue, Congregation Neveh Shalom, which has really reached out and offered us a great deal of support, from holding Ellie's preschool spot until it became clear I wasn't going to get better soon, to the cantor making a special trip over to our house to sing Kol Nidre to me because I wouldn't be able to attend Yom Kippur services. They've also found people willing to visit me, from congregants to the rabbis.

9. My online support group -- mostly individuals who have reached out to me and offered sympathy and advice and welcomed me to their midst. I've also discovered places like Cafe Chronique and Chronic Babe and the blog that inspired me to start blogging myself, A Chronic Dose.

10. I guess an appropriate place to end is that I'm grateful for this blog, a place where I can (for the most part) lower my shields and talk about the topics that concern me, even if most of my posts are a whole bunch o' whining. :)

Anyway, I challenge the rest of you to spend some time thinking about what you're grateful for. If you want to post it here under comments, I'd be honored. If you post it someone else, please come leave me a link to it. And if you just do it in your head or on a piece of scratch paper or simply want to keep it private, that's fine too. But it's always good to take a few minutes and think about the people and things we're grateful for.

Monday, January 28, 2008

A Snow Day

I remember the pure joy of a snow day when I was a kid, lying in bed and listening to the radio read off the school closings and hoping and praying that mine would be included.

Well, that's essentially what we had here, although most of Portland didn't see as much snow as we did on our hill.

So that means I've had one day in the past six (including today) that Scott & Ellie were off at work and school.

It totally messes with my sleep schedule as well as my regular schedule. Focus is not something that comes easy to me lately, and it doesn't take much to distract me from the tasks I've planned to do on a day. And my husband and daughter definitely qualify as big, huge distractions. (And I love them for it. But I really wanted a day of quiet and rest before my weekly appointments begin on Tuesday.)

Saturday, January 26, 2008

Slow But Steady Wins the Race

So I keep questioning myself about whether or not I'm feeling any improvement, whether from the new medication or the acupuncture or simple the passage of time.

And since I've always had some days and even weeks that were better than others, it's really hard to tell.

Maybe it's wishful thinking, but I think I'm seeing some incremental improvement. Not so much in how I'm aware of feeling, but in that I seem to be a little more functional lately.

Yes, I missed my Living Well class on Thursday, but I coped with the unanticipated needs of my daughter's conjunctivitis on Wednesday and on Friday, I managed to accompany Scott and Ellie for Ellie's 3-year physical.

And today, Saturday, I managed to pull myself together to go to an Early Childhood Resource Fair nearby (although the two groups I was hoping would have booths didn't!) for almost 45 minutes. (Ok, is it just me, or is it unreasonable to expect a parent of a 3-year-old to pay $90 tuition for dance class lessons AND spring for a $70 "uniform" that all the kids have to wear. The young woman behind the desk tried to explain to me that the kids wear the same uniform until they're 8 or 9. Yeah, sure. But how many sizes of shoes and leotard is Ellie going to go through in those six years?! Ellie did enjoy the little performance half a dozen girls, maybe ages 8 or so, put on and did say she'd like to learn how to dance like that. But I think we'll find somewhere cheaper!!)

Ok, I admit, I did end up sleeping almost the entire afternoon each of these three days so maybe it really isn't that big an improvement if I'm just shifting the sleep I normally get in the morning to the afternoon.

But I so want this to be working.

How do you measure incremental improvement?

Friday, January 25, 2008

Making Choices

So I ended up not going to class yesterday.

I emailed one of the class leaders (and my buddy) early Thursday morning to tell them about how Wednesday went astray from my plans and that I was heading back to bed and didn't know if I'd make it to class.

Since I didn't wake up until 1:30 p.m., well, I didn't make it to class. (Which started at 1 p.m.)

And I don't know if that was the right choice to make. Part of the purpose of this class, as I see it, is to encourage us to stretch our boundaries a little and hopefully learn more endurance. I wonder if that's the reason the class is the 2.5 hours, which feels like forever to some of us in the class.

But I recognized how I felt after Wednesday and losing my day to recover from the visit to the rheumatologist, and then I looked ahead to knowing that Scott and Ellie were going to be home Friday through Sunday. And I decided I really needed my day of rest and relaxation.

Of course, I didn't maximize it because I had to make a pharmacy run (that really should have been done Wednesday) for more Salsalate. The rheumatologist had warned me that he was putting me on a higher-than-normal dosage and the pharmacist would likely question it, but I didn't realize that meant I would have to sit there and wait while they called the doctor's office and waited for a call back to confirm that yes, he wanted me to take three 750mg tablets twice a day.

Ugh. (On the positive side, I finally found chewable ibuprofin for kids under age 6. Ellie refuses liquid meds these days and I was frustrated that the only kids chewable ibuprofin I could find was marked for kids 6-11 and weighing a lot more than Ellie. But Motrin decided to release some that's marked for kids ages 2-11 now, which is awesome.)

So did I make the right choice skipping the class? Should I have pushed myself to go? Maybe if I pushed myself more often, I would increase my endurance and my functionality would improve too?

Scott did a double take when he got home Thursday evening and said, "Wow, you look pretty chipper for a class night." And of course I had to admit that I hadn't been to class. :)

Wednesday, January 23, 2008

Best-laid Plans

I was so proud of myself for good scheduling this week. It helped in some ways that my acupuncturist wasn't available, so I only needed to manage my Thursday class on Living Well with Chronic Illness and my Tuesday appointment with the rheumatologist.

And on the day in between, today, I planned to take it easy and get plenty of rest.

Well, that was the plan.

My 3-year-old daughter woke up with one of her eyes so swollen and gooky that she couldn't open it up. So no daycare for her, no work for my husband, not nearly enough rest for me.

We made the necessary trip to the pediatrician and confirmed that I could give her the same drops she was on a couple years ago. (The bottle says it doesn't expire until 10/2008!) Coincidentally, it's the exact same prescription, but a smaller bottle, that our cat got when she was having eye issues awhile back. :)

So Ellie goes back to daycare tomorrow. My husband goes back to work. But me? I'm not at all sure I'll be making my class. I'm having a pretty bad day, and if tomorrow morning is like this, I'm probably going to just skip this week.

But I hate to miss one of only six classes.

P.S. Anyone know a good (i.e. cheap) resource for buying urine protein test dipsticks? The rheumatologist wants me to track that in case it turns out to be lupus, even though I think at this point all of us think it will turn out to be a rare case of chronic parvo.

Tuesday, January 22, 2008

A Quick Follow-up

Boy was it a different experience to see Dr. Wernick today.

Last time, I was scheduled for a 2-hour block of time, and ended up spending more than three hours with him and his resident.

I went for my first followup today, and was assured I was only scheduled for a 20-minute visit. But gosh, it felt more like 5-10 minutes, if that!

And at least 90 percent of the visit was Dr. Wernick summarizing my case for the two residents, who each had to painfully squeeze all the joints in my hands and wrists as well as Dr. Wernick.

Simply put, it was really just touching base. The tests he'd done two weeks ago came back normal, as expected since they were repeats of tests that had been done earlier in my illness and had come back normal then too.

He did raise my dosage of Salsalate from 2.5 750mg capsules twice a day to three 750mg capsules twice a day. (Guess my hearing was still too good even though I had a hard time following him while he summarized to the residents!) He warned me that the pharmacist would likely suggest there was a mistake because it was a very high dose, but he said it was intentional and the pharmacist could call his office if my reassurance that it was correct wasn't good enough.

Dr. Wernick leans now toward believing it's Parvovirus rather than Lupus, but says we won't know until we see whether my illness ever goes away and stays away. But because there's a chance that it could be lupus, he wants me to check my urine regularly (every couple weeks) for protein. He wrote me a prescription for dipsticks that I can do at home and told me to call his office immediately if the stick changes color by two degrees or more. I'm sure my insurance will be happy that I'm doing it more cheaply than going into the doctor's office every couple weeks and doing it there!

I do think I'm doing a bit better pain-wise because I'm often not watching the clock for the last hour before I can take my next dose lately. For awhile there, I was taking them every 4 hours, even waking in the night and needing them. Now, I'm often stretching to five to six hours between doses, and sometimes as long as seven or eight. That's good, even if Dr. Wernick still thinks I'm on a fairly high dose of narcotic painkillers.


Apologies to those I'm late owing emails or responses to comments here or on your blogs. The pre- and aftermath of Ellie's bday party really stretched my resources of time and energy, and I just haven't been able to keep up as well as I'd like. I do appreciate your understanding!

Monday, January 21, 2008

Nothing To See Here, Folks! Just Move It Right Along!

I don't really have anything to say, except that I'm here and still recovering from Ellie's bday party. I think overall it was a success, but I'm definitely going way smaller next year ... maybe even small enough that she only gets one child for each year she is old. That sounds nice. Although I'm told it's not until age 5 or so that people don't expect to stay with their kid the whole time but just drop 'em and leave.

I have my followup with the rheumatologist tomorrow (Jan. 22). I'm trying to decide whether I can say if I'm noticing any improvement. In a lot of ways, I don't notice any improvement, but I have definitely cut back some on painkillers, so I must be doing some better. Right? Whether that's the new medication, the acupuncture or the cycle of the moon, I sure have no clue on how to differentiate the cause of any improvement!

And to be honest, I'm very leery of admitting to any improvement because when people hear you're doing a little better, they so often don't understand that you've still got a long ways to go before you reach anybody's idea of being fully healed. It feels like such a small increment that it's almost misleading to acknowledge it publicly.

Am I the only one who feels that way?

Anyway, I look forward to finding out if I truly like this rheumatologist or if he just gives a good first impression. :) I'm expecting to find him as delightful as I found him the first time around.

Sunday, January 20, 2008


I survived my daughter's bday party, thanks to lots of help from friends and my husband and thanks to good medication.

I didn't get in the pre-party nap I'd planned on, but since I hadn't gotten out of bed until 10 a.m., it was challenging to shower, eat breakfast, eat lunch and get party things together and then find time for a nap.

I did sleep very hard last night to make up for it. And it was nice to have a trusted and beloved babysitter this afternoon that I knew Ellie was comfortable enough with that I could go take a nap. (I was careful to pay her first in case her grandmother picked her up before I woke up, but Scott came to wake me about 5 minutes before Angie was scheduled to leave.

Anyway, I'm still exhausted and plan to take it very easy tomorrow. But I made it, and so far without aggravating any painful places.

ADDED Jan. 24: Forgot to mention, if you're interested in details about the party, you can visit my other blog which has some photos and details.

Friday, January 18, 2008

Why Doesn't Conserving Energy Work for Me?

So I've noticed that I can definitely put myself out of commission for several days by overdoing things, but why doesn't taking it easy for several days before a big event (i.e. Ellie's bday party) not seem to leave me any more energetic than normal?

It just seems like there should be a way to add to my energy levels (and lower my pain levels) for special occasions, but I haven't figured out how to do that.

Tomorrow is the big day, and I've spent most of the week trying to take it easy as much as possible, but I'm still exhausted. And I'll try to take a short nap before the party tomorrow, but that usually doesn't leave me feeling any more revitalized than if I don't. (It can, however, possibly prevent my being bedridden for a couple days after a Big Day. Sometimes, at least.)

I'm secretly happy that the timing of Ellie's party on the weekend before MLK Day means that a number of folks won't be able to attend because they'd already planned weekend trips out of town to take advantage of a three-day weekend. The party still won't be small by any means -- I'm expecting about 50-55 people -- but it's better than the 70-75 we've had in previous years. Well, better for the me who's not feeling up to par. But I don't think Ellie will notice the difference -- there will still be 15-20 kids ranging from about 18 months to 8 years old. And that's the most fun part of the party for me and Scott I think -- seeing all those kids having a blast painting and doing other art projects without having to worry about being neat. (We warn everyone on the invitation to wear messy clothes because even the so-called washable paints don't always come out in the wash!)

And it's still mostly a party for us, to celebrate three years of parenthood -- something that for many years we didn't think we wanted to do but are now so happy we changed our minds. :)

Next year, though, I'm thinking of maybe a much smaller, girls-only party (well, Daddy can come but no boys!). Maybe a princess party at a local tea house. Maybe doing pedicures for all the girls and their moms (although I suspect that might get kinda spendy ...), but just something very girly since Ellie is such a girly girl.

On the other hand, it's really hard to beat doing messy art!

Please cross your fingers and think positively for me for tomorrow. The party is 3-5 p.m. Pacific Time on Saturday and I'm going to need all the good vibes I can get!

Thursday, January 17, 2008

This Class Is Going to Kill Me!

Well, not really, of course.

But as I walked out with two classmates from the Living Well with Chronic Illness class, I asked if I was the only one who was barely getting through the 2.5-hour-long class and wondered aloud why they don't break it up into shorter segments and just hold the class over a longer time period, like 12 weeks instead of 6 weeks.

I think that would also be good for support for all of us, and give us a longer period to learn some of the new skills they're teaching us and put them into practice while still having someone to go back to and ask, "How could I have done this better?"

I mean, I seem to do pretty well with all of you chiming in when I ask that kind of question. (And I do appreciate the comments! Really! All except the one that was highly offensive and insulting, but I'm pretty sure that was just a random person who thankfully has never returned!)

But not everyone in the class has found an online support group, and I'm sure I'm not the only one who benefits from the structure of having a class I need to go to even when I feel crappy and just want to curl up in my recliner with an old quilt.

Anyway, I don't mean to sound ungrateful for the class. I think it's wonderful that it's offered and even more wonderful that it was offered free. But it's so exhausting to be there for so long, and I'm sure I'm not the only one who can't fully focus on the material after the first hour or so. And it not only kills my Thursdays, which is to be expected, but it pretty much kills my ability to get anything done on Fridays too. (And that was something else that the other women I talked to agreed about; the exhaustion from the class can leave us debilitated for one to three days afterwards. And that's just crazy.)

I guess at the end of the class -- and today was the halfway point -- they'll probably give us a chance to offer feedback and I'll mention it then. Meanwhile, I'll try to stick it out because I do think I'm learning some valuable things and I'm also enjoying meeting some new friends.

Wednesday, January 16, 2008

Is No News Really Good News?

I saw my internist today, but mostly I was just updating her on what happened when I saw the new rheumatologist last week and asking for a new prescription for my pain meds.

(What's up with the federal law that requires you to have a paper prescription for a certain level of narcotics? I can understand why they might not want to accept phone-ins for pain meds, but why can't the doctor's office fax their prescription in? If it was absolutely necessary, the pharmacy could even call the office to verify the prescription was legit. But it's ridiculous to need a paper prescription every 10-14 days, when my meds run out.)

No noticeable improvement, either from the acupuncture or the new meds. Waiting and hoping.


I'm trying not to stress about the birthday party we're throwing for Ellie this weekend. It will actually be a slightly smaller party than we've previously had, thanks partly to the 3-day weekend and partly to holding it in the afternoon when some of her friends still take naps.

But it's still about 50ish people, ranging in age from newborn to 60-something, possibly a little older depending on whether some of the folks who haven't rsvp'd show up but I'm assuming they would have let us know if they were coming.

We're not having it at the house -- I'm not that crazy! :) But even doing it at the community center, where we have just a little bit of setup to do and none of the cleanup, it's going to be two hours of sensory overload for me.

We thought pretty seriously about not having a party this year. But I made the reservation back in November, when it seemed like I had to be better by late January, right? And now of course it's much too late to cancel. And we did think it was important for Ellie's sake to keep things as normal as possible. And back in November, it sounded like something that would cheer me up. Now it seems like it's more likely to be overwhelming.

But I did plan ahead and asked a couple friends who don't have children (and therefore won't be distracted by needing to keep an eye on their own kids) to be my designated hosts. They're going to come a little early and help organize the setup, and while the party is going, they'll float around and take photos of everyone and hopefully encourage the kids to make wild and messy art. (And a couple other folks have promised to take photos too.)

I figure I'll probably spend most of the party (if I'm smart) sitting in a corner and watching, and trying not to chat too much (because that always wears me out). And I suspect that once we get home, I'll be heading directly to bed! And I've promised myself that this year, at least, people will understand if it takes me more than a few days to get all the thank-you notes out.

Monday, January 14, 2008

A Rough Week

I think the most frustrating part of this illness is that I haven't been able to define the limits yet.

When I have a semi-good day, I seem to overcompensate and try to squeeze in too much. And that leads to one or more days when I only get out of bed to go downstairs to sit in my recliner until it's time to go take a nap back in bed, and so forth.

I think what's complicating things for me is I'm overscheduling. I've got this Living Well class every Thursday, plus I'm doing acupuncture once a week. And that's before I add in any visits to other doctors or the dentist. So I seem to be ending up with at least three days a week with commitments/appointments, and while that doesn't seem like much to my brain, it's apparently more than my body can handle well.

At least I seem to have learned my lesson from last week and will try not to schedule things on three consecutive days!


Well, the Salsalate (new NSAID) has definitely kicked in, at least side-effect-wise.

I spent at least 5 minutes this afternoon trying to figure out where that strange noise was coming from before I realized it was the ringing in my left ear. Oops.

And my hearing is definitely getting worse. I have to say "what?" a lot to Scott, who promises that he understands I'm not doing it to be irritating but sometimes sounds less sure of it. I'm sure it's nearly as frustrating for him as it is for me.

Now I'm hoping the benefits of the drug will start kicking in very soon too.

Saturday, January 12, 2008

New Email Program?

Ok, So I already told you guys that I'm a dinosaur. Here's more proof.

I've essentially been using Eudora, in one version or another, since about 1995. For the most part, I love it.

And of course, they've stopped upgrading it and offering support. And my latest version, which is a few years old, is Eudora 7.0, and it seems to be showing some signs of age.

Anyone have any suggestions for a good email program? I don't like using web email since I prefer to download my email to my own computer for posterity. (For instance, I still have virtually every email my husband and I exchanged since we met in May 1995. :)

Anyway, I don't mind paying for good software. I do prefer software that doesn't tag my emails with advertising, especially if I'm paying for it. And I hate Outlook Express, which is looking like my only other real option. But there's got to be something else out there that I just haven't heard about. Oh, and it needs to be able to pull email from multiple accounts and sort it according to filters that I can create and modify.


Friday, January 11, 2008

Side Effects or Illness?

It's so frustrating when I start a new medication and get sick at the same time because I'm never sure whether it's all side effects from the meds (as it turned out to be with the Plaquenil) or it's a legitimate, unrelated illness.

Essentially, I have cold- and flu-like symptoms. Which, of course, are on the list of possible side effects from the new medicine. But I think it's pretty likely to just be an unpleasant cold (is there such a thing as a pleasant one? :) since Ellie and Scott have had one on and off for a few weeks now. I'm probably just lucky that I held it off as long as I did!


It's technically too soon to tell whether the Salsalate is doing any good. The materials I read about it say it takes 3 to 4 days before it really reaches a level that it can do something.

But I think I am doing a teensy bit better lately. I don't know if it's the acupuncture, the Salsalate or just finally recovering from the exacerbation caused by the Dental Hygienist From Hell that I saw on Dec. 5. I feel like I'm essentially back to where I was before that, which wasn't necessarily such a great place to be, but was way better than how I felt after Dec. 5.

Anyway, I have been able to cut back some on my pain meds, which is generally a good thing. Maybe I won't end up a drug addict after all. :)

Anyway, I still have zero energy and I still have a great deal of pain, but I'm grateful for any small bit of improvement I can find.

Thursday, January 10, 2008


So, the new anti-inflammatory the rheumatologist prescribed for me is called Salsalate. It is apparently the generic of a drug called Disalcid and is used for Rheumatoid Arthritis among other things.

My husband finally picked up my prescription for me tonight (We ran out of time last night and I didn't make it to the pharmacy today as I'd hoped; I'm lucky to have someone willing to make those pharmacy runs for me!). I hadn't remembered what the name of the medication was, so I was happy to finally be able to look it up on RxList.com and remind myself of the warnings the doctor gave me. (By the time he got around to writing prescriptions, I'd already been there three hours and was more than a little dazed and confused.)

One of the major side effects is tinnitus (ringing in the ears) and minor hearing loss. The good news is it's temporary and will only last as long as I'm on the medication. The less good news is apparently that's one of the ways they make sure you're on a high enough dosage; if you're not having those symptoms, you need a higher dose.

At least one person commented that they were surprised that I wasn't already on NSAIDs. The problem is I developed some pretty serious peptic ulcers while on NSAIDs for a 1995 shoulder injury. I started throwing up constantly in June 2000, and eventually an endoscopy showed that I had a huge ulcer. I was put on high dosages of Nexium and told that would counteract the problem of my NSAIDs.

Well, it didn't. And I continued to develop new ulcers in the stomach. So my gastroenterologist switched me to Vioxx, and promised that the combination of Vioxx, which was advertised as gentler on the stomach than the diclofenac potassium I was on before that, and the high dosage of Nexium would prevent any repeats.

Guess what? It didn't. Yet another ulcer, so I got switched to Bextra, which they told me was even gentler on the stomach than Vioxx. No one, I was told, developed ulcers from Bextra, especially while on Nexium or similar acid-blockers.

Yup, yet another ulcer. I came off Bextra in early 2003, and my last ulcer was discovered on an endoscopy in March 2004, just a few weeks before I got pregnant with my daughter. My gastroenterologist told me I should never, ever, under any circumstances take any form of NSAID ever again because my body apparently dislikes them very intensely.

So Dr. Wernick warned me that this medication often (i.e. almost always) causes distress to the digestive system in the form of nausea and diarrhea. He told me to do my best to tolerate it -- it's apparently worse for some people than others, or perhaps some people just have a higher tolerance for those side effects -- because the only other option is Prednisone, and we already know high doses of that make me unhappy. (I do remain on 10 mg/day of Prednisone.)

So we'll see. RxList.com says it takes 3-4 days to start really taking effect, at least for the beneficial effects. We'll see how quickly the other stuff kicks in.

(This is probably TMI to share so publicly but in some ways, I'm curious to see whether the meds that make me constipated -- primarily narcotic painkillers -- or this drug, which causes diarrhea, will win out. Or perhaps the combination will leave my intestines working normally. That would certainly be nice. :)

The other thing to note is that despite Dr. Wernick's assurance that it was highly unlikely I could develop an ulcer from this medication, the side effect warnings mention the possibility in identical language to Vioxx, Bextra and other NSAIDs I've taken with a similar likelihood. So we'll see. I do tend to be overly sensitive to a lot of medications. And maybe I'm a wimp, but it seems like there's a bunch of them out there that I don't tolerate well enough to continue to take.

Wednesday, January 9, 2008

Just Call Me A Dinosaur

I've been online so long that when I first started, I had to teach myself Unix to manage my shell account. Windows existed, but I didn't own my own computer (!) and the laptop and desktop I worked on were DOS based because they had so little memory.

I first used Lynx to surf the Web. There wasn't all that much on the Web back in 1994, and what there was was very text friendly because many/most people were still using Lynx. (No images on Lynx -- all you saw was text.)

When I finally bought my own computer in late 1995, I bought a PC with Windows 95 on it and was thrilled to finally see the Web graphically. I remember when Alta Vista was the hot new search engine, and later when Google first started and was only word-of-mouth to learn about it. (Once I tried Google, thanks to a tip from my brother, I never went back to Alta Vista ever again!)

Anyway, from the start, I used Netscape as my browser. Eventually, some sites were designed specifically for Internet Explorer, and for awhile, I could just ignore those sites. But eventually, I needed to use IE for certain sites (including my bank's online banking site), but I stuck with Netscape as long as I could.

Last week, after reading about the demise of Netscape, I decided I needed to do something and finally downloaded Mozilla's Firefox that I've been hearing about for years. I love that it was able to import not only my Netscape bookmarks, but even the passwords I've let Netscape store. That's a feature that even the Netscape upgrades were never able to do for me -- they'd import the bookmarks but I'd have to do passwords manually as they came up. (There was also an option to import from IE, but not both for some reason. I imported from Netscape since the vast majority of my bookmarks were there.)

I also like that it's Open Source. And so far, I can use it for almost everything I do, including my internet banking, which is awesome! Unfortunately, my hobby site doesn't work with Firefox any better than it did with Netscape. Probably has something to do with the fact that I created the site with Microsoft's Front Page.

But for the most part, I'm done with IE! :)

Tuesday, January 8, 2008

Update After New Rheumatologist

So I saw the new rheumatologist today.

Dr. Wernick is the director of the Providence Arthritis Center in NE Portland. He almost never takes new patients, I'm told, but my internist was able to get me in by dropping her mentor's name and piquing his interest over the phone with my positive parvovirus test. My internist says he's among the best, if not THE best, rheumatologist in Portland.

I liked him a LOT better than my old rheumatologist, but man, it was a long appointment. They didn't tell me until I got there that it was scheduled for 2 hours, and it was over three hours later that I left his office.

First, a resident took my history and went over the incredibly detailed six-page intake form I'd filled out. We discussed my symptoms and she did a brief physical exam.

Then she went out to bring in Dr. Wernick, and it was a little like Gray's Anatomy in that the resident regurgitated the pertinent details that I'd given her, including pulling out test results that were worth mentioning. I have a very complicated medical history for this illness, and I had to correct her on minor points a few times (which Dr. Wernick had told me to do).

By the time he was ready to do the physical exam, he had already taken two pages of notes, which he said had never happened before. (I'm sure he was exaggerating, although I do know my history is very complicated.)

He did ask why I came to him instead of returning to my previous rheumatologist, and I told him that the other rheumatologist had told me when he referred me to a hemotologist that my problem was not rheumatological but when I checked out fine (possible MGUS) despite the monoclonal proteins, my internist and I both agreed I needed a different rheumatologist.

Dr. Wernick says he often gets referred the "mystery cases," and I definitely qualified on that count!

He did the physical exam, which was pretty standard. What impressed me was that when he looked at the knuckles on my hands, he compared them to each other and asked whether I was right or left handed. I've been told before that I don't show any noticeable joint swelling, even though I've tried to show these funny padded areas between some of my knuckles (the ones closest to the hands). Dr. Wernick, however, noticed them on his own, noticed they were more prominent on my right hand, and pointed them out to the resident as noticeable joint swelling. I felt so validated. :)

Anyway, his conclusion was that I had more than the necessary four criteria for a lupus diagnosis. However, he noted that parvovirus can mimic lupus and the effects of it can last a couple years in adults.

He says it would be really unusual for me to come down with both parvo and lupus at the same time, but that it was possible. Essentially, he said, he would treat them both the same at this point so it doesn't really matter which one it is.

He wants me to continue taking the low dose of Prednisone I'm currently on (10mg), and prescribed an NSAID that I don't remember the name of but he promised wouldn't cause me another ulcer. (Yeah, I've heard that one before!!)

He said it would be safer for my stomach than the ibuprofin I've been taking on the sly to help with some of the joint pain. He also wants me to take 1200 mg of calcium and 800-1000 mg of Vitamin D to avoid bone degeneration from the Prednisone.

He also ran some more blood tests and yet another urine analysis. I go back to see him again in two weeks (Jan. 22). (The receptionist promised me it would just be a 20-minute appointment and not the entire morning again!!)

Dr. Wernick did say that if it does turn out to be lupus, it doesn't appear that my kidneys are involved and that means the prognosis is very good and the disease should be very manageable. Although since lupus is a chronic disease, we're still hoping it's simply parvovirus because that will, eventually, go away completely.

In theory, at least. Time will tell, I guess.

Monday, January 7, 2008

A New Year, A New Out-of-Pocket Maximum

I had really gotten to like not having co-pays for my doctor visits after reaching my insurance company's out-of-pocket maximum after my July hospital stay. (A $20,000 hospital bill will do that for you!)

But it's a new year, and that means I'm back to making my $15 co-pays every time I see a doctor. I suspect that will slow me down a little bit on my check-ins with my internist, and I'll rely a little more on phone calls instead of office visits. (Although I feel guilty about those because she doesn't get paid for phone calls, just the number of patients she sees in person each day.)

What I never understood was why perscription co-pays didn't count toward that out-of-pocket maximum and why I still had to pay them after I'd reached the max. In some ways, I would have preferred to pay my $15 co-pays for office visits and not had to pay several hundred dollars per month for my meds. I'm not sure, but I think it would have been cheaper.

I definitely never knew it was so expensive to have chronic illnesses before this experience. Sure, I've had asthma since childhood, but it's been relatively mild in adulthood. And I have hypothyroidism, but that's just a $10 per month medication and once a year or so blood tests. I have back problems dating back to an August 2006 auto accident, when I got rear-ended by an uninsured driver. And some chronic pain dating back to a 1995 on-the-job shoulder injury that required two surgeries before the state of Washington declared me permanently partially disabled. But even all those combined were not as draining on my (our) personal finances as this current illness.

Saturday, January 5, 2008

Well, It Was Worth A Try

I accompanied Scott & Ellie to Tot Shabbat today.

It's a service for the under-5 crowd and their parents, a very abbreviated service that lasts 45 minutes, includes singing and dancing (for those who care to) and a story (instead of a Torah reading).

Scott's been great about taking Ellie when he could while I've been sick. But I really felt bad about not making the effort to be there. Plus, we've had problems with Ellie refusing to go sometimes, and I thought my presence might encourage her to be more enthusiastic about the outing.

Well, that last part didn't really work. She cried before we left. She cried on the way there. ("I just want to stay hooooooome!" she whined.)

Scott dropped me off at the main doors to the synagogue since I knew I couldn't walk even from the handicapped parking and still be able to make it through the service.

So I waited on a bench inside the door for them, and Ellie seemed OK about being there, especially since we let her wear her princess tiara and jewelry and "glass slippers."

But gosh, it hadn't really registered how far it was from the door to where they hold the Tot Shabbat service. So I was feeling tired before I got there. And then Ellie decided she could only sit on my lap, but she really wanted to be balanced on just one leg, which meant that I had to keep hold of her so she didn't lose her balance and fall off.

It was just all a bit too much for me. I love singing the prayers and songs we sing there, but I'm too short of breath to really do it comfortably. I sat during the parts where people stand. I had worried that the service leader would comment on it, but we were all the way in the back and I don't think he could see me anyway. :)

Tot Shabbat services are just this incredibly semi-organized chaos of kids running around and crying and talking and such. It's a great way to introduce them to services, but I get tired just being around groups of people, and I was so worn out after it was over (including a light lunch they serve after the service) that I went straight to bed when we got home and slept from 12:30 p.m. to 4:30 p.m.

I know it's good to occasionally push the boundaries and test myself on what I can do and tolerate, but I just get so frustrated when it doesn't work out well. I need to remember to congratulate myself for trying instead of just beating myself up for what doesn't work.

Thursday, January 3, 2008

Living Well With Chronic Illness

Well, I'm hoping I haven't bitten off more than I can chew.

Back in October or so, I saw an article in The Oregonian about a Stanford University-developed program being offered around Oregon called Living Well with Chronic Illness. It sounded interesting and had a bunch of quotes from participants who said the six-week class really helped them become more functional despite chronic pain and other debilitating illnesses. (I'd link to the Oregonian's article, but they're only online for free for two weeks and then you have to pay to access them.)

Either I didn't realize the class was 2.5 hours per session, or I probably just assumed I'd be feeling better by January. In fact, I remember wondering if I'd cancel because I was all better by the time it started.

Of course, that was a pipe dream and I'm not anywhere close to all better.

If I get nothing else out of it, it's nice to be around a group of people who have similar issues to mine, even if their chronic illness is very different than mine. Everyone in the room nodded or verbally agreed when I said one of the difficulties I've found is not knowing where my limits are until I hit the brick wall that says I went too far and overdid things. That's something most healthy people I've spoken to don't entirely understand.

But oh, am I tired. Just the length of the class was difficult. I get exhausted after about an hour with a single visitor, and faster when I'm around groups. And 2.5 hours was just really, really, really long.


Next week, looks to be very challenging because I overscheduled myself. I'm going to have to cancel at least two appointments, I think.

Tuesday, I see the new rheumatologist. The appointment is at 9 a.m. in NE PDX, and I'm dreading having to be out in the trailing end of rush hour. I just never know how much time to plan for being on I-84.

Wednesday, I have my acupuncture appointment.

Thursday, I scheduled a dental appointment (for a filling) before I got the reminder call about the class, which meets that afternoon. There's no way I can do both, so I'm going to have to postpone the dental appointment.

Friday, I see my internist. I think I'm going to call and see if she has any availability the following week. It's not really an urgent requirement to see her. Mostly, I need to follow up on the visit to the rheumatologist and also get a new prescription for pain meds. The level of narcotic I take requires a paper prescription each time -- no calling in for refills and they can't even fax over a prescription for me. They often mail them to me, but I've had one get lost completely and never show up and another than took 8 days to arrive when in-town mail usually arrives the next day. So I like to pick them up in person when I can time my appointments, even though it's a hassle to drive downtown just to get it.


So, a couple people commented on my last post in email and here on the blog. I neglected to mention one of the details of the Blog365 challenge, and that was that you need to blog daily except for Leap Year Day (Feb. 29). That's why it's Blog365 and not Blog366.

Wednesday, January 2, 2008

Blog 365

So, the most observant among my readers may have noticed a new badge in the side column below my profile.

I've signed up for the Blog365 challenge, vowing to post each day for 2008 in either of my two blogs. We'll see if I'm up to that challenge! I figure I managed it for the month of November, and it was a worthy goal even if I end up missing a day here and there.

Hopefully, I won't resort to too boring of items to write about. But I'm sure there will be days like today when I'm not up to too much.


I had my second acupuncture appointment today. I really like my acupuncturist, but I haven't really noticed any improvement yet. Time will tell. Abby tells me that I should notice improvement within 3-5 sessions, and I'm going weekly so it should kick in soon.

If nothing else, it's very relaxing to lie on the massage table with the needles in, listening to relaxing music. I was so tired today that I almost dozed off.


Scott and Ellie went back to school/work today, which was a relief for me but a bit traumatic for Ellie, who was home for 12 days and got out of the routine of going to school. It sounds like she had a rather rough day. Hopefully, she'll settle in soon. It's ironic that after months of talking about wanting to go to preschool, now that they moved her up to the preschool class (for 3-year-olds), she wants to be back with her old teacher. They're transitioning her between classes, but she refused to use the potty at all with the new teacher.

Tuesday, January 1, 2008

The First Day of a New Year

Well, it's hard to believe it's 2008 already. But here we are.

We had a quiet New Year's Eve with a delicious dinner that we shared with friends who brought their two children over. Even though their kids are older than Ellie, they played very well with her.

But it was an exhausting day for me. We started out by going to JC Penney's to get photos of Ellie taken. The photo session went well, although Ellie found an Abby Cadabby doll (a new Sesame Street character who's a fairy) and it was tough to get her to take any photos without the doll in them!

I'm getting better at asking for what I need. The way they're set up, you look at photos at a computer to choose which ones you want to buy. And of course, there were no chairs at the counter by the computer. So I explained that I was ill and unable to stand for long periods and the clerk went and fetched me a stool. It always takes forever to go through all the photos, especially because they insist on showing you the enhanced ones first, which cost more money. We almost never buy those, although I did succumb to a collage with Ellie in her fairy dress holding the fairy doll. It was too cute, although I'm still not sure it was worth $30.

Of course, while we were at the mall, we had to stop at Stride-Rite and get Ellie's feet measured. Ellie was so disappointed to find out that her shoes still fit and we weren't going to buy her any new ones.

We finally made it home at 1 p.m. (after having left home at 10 a.m.), and I went straight to bed, where I napped until shortly before our guests were due to arrive around 4.

We really enjoyed having them here, but it was a leisurely dinner followed by a break to watch the kids playing before a decadent dessert. Finally, at 8 p.m., I called an end to the evening, which was good for all of us because their kids were overtired and getting hyper and Ellie was overtired and also getting hyper.

I pretty much went to bed as soon as Ellie was down for the night. And I told Scott to let me sleep in, but neither of us realized I was going to sleep until past noon! I got up just in time for our babysitter, Angie, to come over to play with Ellie and give Scott a woodworking break.

And despite having gotten more than 14 hours of sleep, I'm still recovering from overdoing things yesterday. I'm so glad that Scott and Ellie go back to work and school tomorrow and I can have an entire day of downtime. The past 10 days or so that they've been home have been hard on me. Despite daily naps, I'm just not getting as much sleep and quiet time with both of them home. It was either last night or the night before that Scott commented on how dark the circles were under my eyes. I just said, "Yeah. I'm tired."

Here's to hoping I and all of you have a happy and healthy 2008.