Monday, November 30, 2009

WooHoo! NaBloPoMo Is Over!

Yay! No more forcing myself to post daily even when I'm exhausted and feeling lousy just because I signed up for NaBloPoMo!

I promise to continue to try to post regularly and not go silent like I did earlier this autumn. 

But meanwhile, I'm going to go pat myself on the back for accomplishing what I set out to do, even though it wasn't easy.

Sunday, November 29, 2009

Stress Makes Autoimmune Diseases Worse? Big Surprise There -- Not!

Thanks to my friend, @hyperchondria, I discovered an advocacy group I hadn't come across before: The American Autoimmune Related Diseases Association (AARDA).

I was browsing the AARDA website and came across a bullet item on its facts page that made me roll my eyes and chuckle: "Studies have shown that patients who understand their illnesses follow their treatment plans better than patients who are uninformed about their illnesses. Also, they experience less stress, which is a known contributor to worsening autoimmune diseases."

Because of course I'm uninformed about my illness(es) since I still don't have a solid diagnosis. And having a mystery illness definitely contributes to my stress levels, and isn't it just unfair that stress can contribute to worsening of my illness? 

It just makes me laugh, but not in a positive way if you know what I mean.

Anyway, I plan to try to contact them in the next few weeks. They have a patient education person who apparently can give referrals and I figure they might be able to help me (and my doctors) figure out what's going on with my body. Or something. 

Saturday, November 28, 2009

The Cake Fairy

I ended up with several invitations for the holiday weekend -- two for Thanksgiving and one for a Shabbat dinner.

I regretfully declined all of them due to my fatigue and feeling yucky.  (On top of my current flare, I'm running a slightly higher fever than my norm and have some cold symptoms yet again.)

So what happens but a friend came by on Black Friday and brought me a piece of leftover cake from her Thanksgiving dinner. Dessert, after all, is (one of) my favorite part(s) of holiday meals.

A little company was nice. The cake was delicious.

Other than that, the most interesting thing that happened since my last post is that my left thumb is noticeable swollen over the joint. Not a huge amount, but noticeable when I put my thumbs next to each other. (I'd post a photo, but Scott has the camera so he can catch everything I'd want to see so I feel like I was there when I see the photos.)

I did my share of spending also, although I definitely wasn't standing in any Black Friday lines! (So, what kicks off the holiday shopping season in Canada since they celebrate their Thanksgiving in October? Is it Black Friday everywhere, or just in the U.S.?) 

I ordered our holiday cards from Costco, and also got some other cool stuff that I'd describe but don't want to ruin the surprise for the recipients. :-) I'm hoping they think it's pretty cool, though, and I'll let y'all know what it was after the holidays if anyone's curious.

I'm a little worried about our kitty, who hasn't been eating much while Scott & Ellie have been gone. Her eyes, which have chronic infections, are looking worse again, but the good news is she has an appointment at the kitty ophthalmologist (!) on Monday so hopefully we'll get it under control.

Friday, November 27, 2009

Precious Sleep

I had one of those nights on Thanksgiving Eve.

With an empty house (Scott & Ellie are spending the holiday weekend with my inlaws), I tend to stay up too late anyway, so it was almost midnight when I finally made it into bed.

And I don't know if it was the absence of my family (and especially my husband's breathing) that I missed, or the extra yowly cat who's been complaining about the absence of the munchkin, or that I'm a bit flared or what. But I just couldn't sleep. 

First I tried my headache meds since that seemed like the most obvious culprit of why I couldn't sleep. That helped mellow my headache some, which made me notice all the other aches and pains. There was just no finding a position to lie in that didn't make some part of my body complain. So I took a pain pill.

At 3 a.m., I gave in and took an Ambien, figuring no one would care if I slept until late afternoon. At 4:30 a.m., I gave up and got out of bed and went downstairs to read. Kept the computer and the TV off since I've read that looking at a flickering screen makes it harder to fall asleep.

I put a load of laundry in the washer. I ran the dishwasher. I read a light novel. No dice.

I discovered that apparently newspapers get delivered later on holidays than normal weekdays, fetching the paper in at 6:45 a.m.

Then I was hungry, so I had leftover pizza for snack/breakfast. And finally made it to sleep around 8 a.m. Thursday. 

It left me happy that I had chosen to stay home alone. A sleepless night in a hotel room with a sleeping child and husband is way worse than a sleepless night in a house where I can get out of bed and not be disturbing anyone. 

And Thanksgiving Day turned out to be a perfect day for sleeping during "daylight" hours because it was such a gray day that sunlight didn't wake me before I was ready. And I was grateful that there was no one expecting me for a holiday meal or waiting for me to get up. (Ellie likes to roust me, and will sneak upstairs to do that if Scott isn't paying enough attention to her.)

I hope you all had a happy Thanksgiving!

Thursday, November 26, 2009

Thankful Thursday

It's Thanksgiving, so it's only appropriate to list a few of the things I'm thankful for, right?

Here we go. Just a few of the things I'm extra grateful for today:

  • The support I get through this blog and the other online chronic illness communities I participate in.
  • Social networking (Facebook, Twitter, etc), which allows me to reconnect with old friends and keep in touch with newer friends that I don't see very often since I got sick.
  • The Best Husband On Earth (tm), who rarely complains about the extra duties he's had to take on since I got sick.
  • A quiet, empty house over the long holiday weekend. (Scott & Ellie went to celebrate with my inlaws. I wasn't up for the trip or the socializing involved.)
  • That I was able to attend my daughter's preschool class "Thanksgiving feast" and the performance of two songs with lots of hand motions.
  • My amazing, beautiful and brilliant daughter, who was so pleased to see me at her school event on Wednesday. Sometimes I'm still in awe that I grew her in my belly!
  • That although my illness (and the need for full-time daycare for Ellie) has been challenging financially, we're not living on the edge like so many people with chronic illnesses are forced to live. 
  • NaBloPoMo is almost over. :-)
  • The support I receive from my extended family and family of choice.
I'm sure there's more. There's always more to be thankful for, isn't there? If nothing else, I'm glad my health isn't worse than it is. And I know there's much worse out there than what I'm dealing with!

Thanks for reading. Thank you for the responses some of you post here on my blog or email to me privately. 

Happy Thanksgiving to you and yours! 

Wednesday, November 25, 2009

So How Do You Know?

Ok, here's a question for all my friends in the chronic illness community -- how do you know when it's time to seek medical attention for symptoms that probably are just be a worsening of your normal symptoms?

I'm having one of those weeks where I know, if I call my doctor or speak to a triage nurse, I'll be told to get to an ER to be checked out.

My fatigue is way up, I'm feeling like I'm having trouble catching my breath, and my chest pain is through the roof. 

But I've been to the ER enough times in the past 2.5 years that I'm fairly sure it's just a general flare from overdoing things the past couple weeks. My chest pain is probably just the costochondritis I've had in varying degrees since June 2007. The breathing is because it hurts to take a deep breath, so I don't, so I feel out of breath. 

I know my symptoms are enough to get me checked out for pulmonary embolism. But I also know that the odds that I've got PE or something serious are miniscule. My current symptoms are most likely just the ups and downs of my "normal."

What about you?

Tuesday, November 24, 2009

Not So Wordy Girl

My husband used to call me "wordy girl" for a variety reasons ranging from my occupation (journalist) to the fact that I love debating the proper use and meaning of words. And, well, I probably "corrected" him more than once. :-)

I love words, and have as long as I can remember.

So it's really frustrating to me that I seem to be having increasing numbers of times that I can't find the right word. I know that happens to everyone occasionally, but these days, it's more than an occasional thing. 

The good thing is I have a fairly large vocabulary. So even when I can't find the word I want -- which drives me absolutely crazy -- I can find something close, something that works well enough even if it's not exactly the right connotation. 

And most of the time, people can't even tell unless they know me very well or I mention it. 

An example is in a post earlier this month where I referred to not wanting to "puncture his balloon." I wasn't even entirely aware of that when I did it, but of course I meant "burst his bubble." 

It's just these little things that drive me nuts. I was reading a book over the weekend in which a character was angsting that she hadn't heard from the guy she liked in seven weeks -- "exactly 50 days." Then I tried, and failed, to remember what seven times seven was (I knew 50 days didn't sound right for precisely seven weeks). And I couldn't remember my multiplication tables. 

A couple months ago, I got lost driving from home to my daughter's preschool, where I was meeting my husband for a chat with the principal. I was late, which was pretty embarrassing. But having gotten lost going somewhere I'd been going semi-regularly for over a year was upsetting.  I'm not sure, but I think that's the last time I drove myself there.

Chalk it up to brain fog or intense fatigue or whatever. But it's bad enough when my body doesn't work the way I want it to, does my brain really have to stop working too?

Monday, November 23, 2009

Done In


I'm pretty sure my brain isn't working right now. After an exhausting week, I spent Saturday mostly resting and recuperating after way too hard a week.

Then of course I was crazy enough to head out Sunday with Scott to hit the open houses at two different schools we're applying to for Ellie for kindergarten and beyond. 

It was good to be at them to meet people and also get some questions answered. And I think we get points for attending the open houses when the admissions staffs make decisions. (Or maybe not. Who knows? The admissions to private schools are a total mystery to me.)

But boy does it take a lot out of me. 

I hope y'all had a good weekend!

Sunday, November 22, 2009

My Ever-Growing Collection

So I may have a mystery illness, but that doesn't mean I haven't been collecting diagnoses left and right. 

Some of them date back to early childhood (I'm told my first severe asthma attack requiring hospitalization was when I was 8 months old). Most, of course, were acquired in the past couple years.

But I recently tried to collect all my diagnoses on a list, and as long as I've done that, I figured I might as well share it with y'all. (Hey, I lived in West Virginia for 4.5 years, so even though I'm not a native southerner, I feel like I earned the right to say y'all. :-)
  • Severe depression
  • Intense chronic fatigue
  • Chronic pain in multiple joints
  • Idiopathic hypersomnia
  • Tinnitus and moderate hearing loss
  • Inappropriate sinus tachycardia w/pulmonary ventricular contractions (PVCs), both worsened with activity
  • Dysautonomia (primarily a "mild" form of POTS)
  • MGUS (monoclonal gammopathy of undetermined significance)
  • Degenerative disk disease in both low back and neck w/stenosis & nerve compression
  • 1995 shoulder injury that required two surgeries (3/97 & 1/99) involving a/c joint removal, bone spur removal and repair of a labrum tear. WA L&I declared me 15 percent permanently partially disabled. 
  • Undifferentiated connective tissue autoimmune disease (UCTD) 
  • Migraines (first diagnosed in 1978) and chronic daily headaches for at least the past six months (sometimes migraines, sometimes not)
  • Costochondritis, chronic
  • Parvovirus, possibly chronic (but that's a very controversial diagnosis, along the lines of chronic Lyme disease, which not all doctors accept as "real.")
  • Tethered spinal cord
  • Hypothyroidism
  • Asthma & allergies
  • Sinusitis, chronic
  • Vitamin D deficiency
  • Iron deficiency
  • Chronic stomach pain/sensitivity from series of peptic ulcers (2000-04) caused by use of NSAIDs that left massive scar tissue in stomach
  • IgA deficiency

Saturday, November 21, 2009

Is There a 12-Step Program For This??

I clearly have a problem.

No, it's not my mystery illness, although it has a multiplier effect on the seriousness of my problem.

But I just don't know my limits. And because I don't know them, I don't just nudge them occasionally, I blow right past them. 

So I knew Thursday would wipe me out. So on Wednesday, I emailed the other women on my MOMS Club chapter's board and asked if they'd mind coming to my less-than-pristine house for the meeting on Friday. Otherwise, I said, I didn't think I'd be able to make it. 

So I survived Thursday, although it felt like just barely. And I was not a happy camper when my alarm went off at 9:30 a.m. on Friday, but at least I could stay in my jammies and didn't have to go anywhere. And I could go back to bed after our meeting, which started at 10:30 a.m., right?

The meeting went well, and we had a good discussion and voted on Important Business. At the end of the meeting, I had some action points that were my responsibility, so I sat down with my computer to do them right away. And of course, I got distracted. 

After I took care of MOMS Club business, I decided to watch the second half of Revolutionary Road that I'd started a couple days ago. (Can I just say that I thought I knew the ending to the movie, but I didn't and was totally surprised by it.) When the movie ended, I got online to express my amazement on Facebook about the ending. And of course, once I was on Facebook, I was sucked in and started reading what all my friends were up to. 

And luckily, one of them commented about how happy she was that it was Friday night and she had a glass of wine in hand. A glass of wine sounded really appealing, and I thought, "Hm, maybe I'll see if Scott wants to open a bottle of wine tonight for dinner."

Then: "Dinner!!!!!! Aaaack!"

You see, during my out-of-body (or at least out-of-mind) time at the preschool on Thursday, we invited one of Ellie's teacher over for dinner. 

For Friday night. 

For beef stew. 

And beef stew, of course, is one of those dinners that's fairly easy to make (which is why it's in my limited repertoire) but requires a lot of time to cook. 

Ideally, I would have started it around 2 p.m., but I didn't see that friend's mention of wine until just before 4 p.m., which really is cutting it close for a 6 p.m. dinner. I suspect the carrots will still be crunchy when we serve dinner ...

But the worst part is I'm totally done in already, before our guest even arrives. Before Scott and Ellie are home, even. 

What was I thinking? 

Scott even tried to stop me when I suggested Friday night for dinner. He touched my arm and said, "Really? Are you sure?"

But I was all in social mode (i.e. hiding how I feel, even from myself), and I was like, yeah, no problem, no big deal. It's just beef stew, after all.

There's gotta be a 12-step program out there somewhere for people who over-commit themselves, ideally with a special chapter for those of us with debilitating chronic illnesses who still over commit.


Friday, November 20, 2009

Over-Busy Day

Naps are my best friend.

I don't know how I'd have gotten through Thursday without naps.

Ellie's preschool was closed for parent-teacher conferences. So it seemed like perfect timing to schedule her "assessment" at one of the schools we're applying to for kindergarten next year. (She did great, as far as we can tell.)

So that meant getting up and being ready to leave the house at 9 a.m. Can I just say I don't do 9 a.m. any more? But I did, and filled out odd questionnaires while we waited for Ellie to be done. (They asked about problems during my pregnancy. Does that really matter nearly five years after Ellie's birth?)

Thank goodness Scott was there to do the driving. 

Got home at 11:30 a.m. and went straight to bed, asking Scott to wake me in two hours so we'd be on time for our appointment with Ellie's teacher at 2 p.m.

Boy did I not want to get up at 1:30 p.m. But then, I hadn't wanted to wake up at 8 a.m. either. 

So, off we went to the preschool. Socialized a bit, bought some books at a Scholastic Book fund raiser, and got home at 3 p.m., just in time to collapse again. 

If I'm lucky, I have just enough time to recover in time to attend some open houses Sunday for other prospective schools for Ellie. 

And the cycle begins again. 


Thursday, November 19, 2009

Thankful Thursday: Color Me Lucky

I think maybe I should buy a lottery ticket!

I keep my laptop in the kitchen on the counter since my most typical place to use it is in my recliner. 

Wednesday afternoon, I fumbled my laptop while picking it up off the counter and it fell, from waist high, to the hardwood floor. I shrieked and panicked, but my guardian angel must have been looking out for me because ... it seems to be fine! The only consequence I've noticed so far is that a lot of dust/dirt that must have been in the keyboard came out onto the screen. (It was screen side down on the floor when I picked it up.)

I suspect this means I ought to back it up now, just to be safe!!

Wednesday, November 18, 2009

Patients For A Moment, Vol. 1, No. 12

It's that time again: Patients For A Moment, the blog carnival for, by and about patients is hosted this time by Jenni at ChronicBabe. (If you're not already signed up for her eNewsletter, Goodie Bag, then you should go do it Right Now!)

Jenni did a great job with this edition, with tons of great contributions (including one from moi! Well, mine might not be great, but there are great ones to read in this edition.)

I think the thing I like most about this blog carnival started by Duncan Cross is that I've learned that no matter how different our health problems, most patient bloggers have more in common than not. I find a sense of reassurance, somehow, in that commonality and a lessening of my sense of isolation from my mystery illness. Thanks, Duncan, for creating this bit of community!

Yep, I'm One of Those Now ...

I'm tired of my frequent/chronic sinus infections.

So many people have recommend neti pots to me over the past couple years, and I halfheartedly looked around for them at the pharmacy. But even after seeing it demonstrated on Oprah last year, I wasn't convinced I really wanted to poor salt water into one nostril until it ran out the other nostril. 

But after my internist and my immunologist started sounding like maybe the sinus surgery my ENT wants to do might be a good idea, I decided I needed to do whatever I could to avoid it.

But I just wasn't sure about the whole teapot-looking thing. I mean, how do you pour a teapot up your nose?  

So I was kind of pleased when I found this NeilMed sinus rinse thingie next to their version of a neti pot. It's essentially an extra-large nasal spray bottle. I put the tip of it into one nostril and squeeze gently and steadily until the liquid starts running out my other nostril.

It's weird. It really is weird. There's an instant as the liquid hits my sinuses that if feels a little like drowning. But as soon as the liquid starts coming out the other nostril, it's fine. 

The theory is that flushing my nose and sinuses will wash away allergens and bacteria. In theory, I will have fewer colds and other infections. Time will tell.

It's only been a few days, but I definitely haven't seen any improvement in my allergies and congestion yet. But who knows?

Note: I bought the NeilMed sinus rinse. I have not received any payment or freebies from the company for mentioning them. If anyone ever does send me a freebie that I end up writing about, I will fully disclose that fact.

Tuesday, November 17, 2009

Read This: Every Patient Tells A Story by Lisa Sanders, MD

I wish I were up to posting a real review of Dr. Sanders' book Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis. Unfortunately, my energy levels and ability to concentrate aren't cooperating.

But I do recommend the book as a fascinating view into the minds of doctors as they try to figure out the tougher cases.

Interestingly (to me at least) Sanders was a journalist who covered science and medicine/health and decided to go to medical school. These days, she's an internist as well as a columnist for The New York Times. (For those who don't know, I'm a former journalist and sometimes joke that if I ever solve my mystery illness, maybe I'll go to medical school. My internist keeps telling me I should since I've learned so much through this experience.)

The book is well written, easily understood by those of us without medical or science backgrounds. It gives some history of medicine and how it's changed from listening to the patient to focusing on results of tests and lab work.

The problem, of course, is with patients like me, with lots of abnormal test results but the combination don't point to a specific diagnosis. When that happens, she says, doctors rely on their network of colleagues, calling "every smart doctor" they know.

For those who are medical mysteries like I am, the book will give you a little insight into your doctors' thought processes. I also thought it was encouraging to read about doctors who really care and want to help those patients who are not easily diagnosed. Although I've got some really good doctors, it feels like once they realize they don't know what's wrong with me, they lose interest in trying. Sigh. I'm blessed with a caring internist who is supportive of me and hasn't given up on me. Now I just need to find the right specialist (and figure out what specialty I fit into best) ...


Monday, November 16, 2009


Sorry there wasn't a post this a.m. I've been writing a day ahead and scheduling it to post just after midnight. Figured that meant when I had a really bad day, I had extra time while still posting daily to the blog for NaBloPoMo

Yesterday was the open house at Catlin Gabel for the middle and upper schools. Yeah, Ellie is only going into kindergarten, but we figure if we're applying to K-12 schools, we want to be confident that we like the upper grades as much as we do the lower grades. Of course, this is the third year we've gone to these open houses, so we pretty much know that we'd be thrilled to send our daughter there. But we learn new things each time we go. 

After that, I was so worn out that I was asleep for the night by 8 p.m. Life would have been a bit better if I could have stayed in bed today, recovering. But I had a doctor's appointment with my internist (who's referring me to a pain clinic and a psychologist -- possibly in the same place), followed by a meeting at an attorney's office for help with my Social Security disability claim. 

And now I'm pretty much brain fried and exhausted. But I still got my post done today! Thankfully, tomorrow is all about recuperating so no appointments or anything. 

Sunday, November 15, 2009

One of Those Nights

Sometimes I really don't understand how I can be so tired, with so little energy, and yet have so much trouble falling and staying asleep.

I know it's a common problem for folks with chronic illnesses, especially when plagued by chronic pain, like I am. 

Last night (Friday night), I just couldn't find a position that didn't hurt too much to let me relax enough to drift off. 

I'm sure I dozed some, although I never felt like I'd fallen asleep and/or woken up. When Ellie tried to wake Scott up at 6:45 a.m. (which is late for her!), I tried to respond to her so we could let him get a little extra sleep. I figured, hey, I'm awake anyway and don't seem anywhere near falling into a real sleep. Not that I was anything but a zombie, but I was a zombie who could turn on the TV and give her breakfast. 

It's nights like this one that make me feel empathy for the recent string of accidental overdoses by celebs. I felt so desperate to get to sleep that I was tempted to just keep taking a different (or more of a) prescribed medicine, anything to just make me unconscious so I didn't feel anything anymore.

I started out taking some Benedryl (50 mg) with my normal bedtime meds, since it will often put me out. Then I got up to get a pain pill (5 mg oxycodone). Then I considered taking more oxycodone (my Rx is for 2 5mg tabs every 4-6 hours), or a Klonopin, or an Ambien. (By the time I realized I wasn't going to sleep on my own, it was past 2 a.m. and I was afraid if I took an Ambien that late, I'd need to sleep until 3 p.m.) Or even a Baclofen. Yes, I essentially have my own little pharmacy.

I didn't take any of them, because at that point I feared I'd lost track of what I'd already taken and I didn't want to risk an overdose. (I might be depressed, but I'm definitely not suicidal.)

It reminded me of the days in the late '90s, when my first shoulder surgery had been botched and my pain levels were completely out of control because I was still trying to work full-time. For a little while, I started having a wine cooler or mini bottle of wine in the afternoon/evening along with my pain meds. The combination of alcohol and narcotics were the only thing that gave me a break from the pain. But I quickly realized that path would only make me into an alcoholic (and possibly a drug addict too), and stopped the combination. 

At 9 a.m., I finally fell asleep for a few hours with the help of another dose of pain meds. 

And I'm still feeling like a zombie, so forgive me if I've rambled or not made sense here. I think it's time for me to head back to bed and, hopefully, blessed unconsciousness. With luck, tomorrow will be a better day.

Saturday, November 14, 2009

Hot Potato With Patients?

Sometimes I feel like my doctors are just playing "Hot Potato" with me.

They keep passing me around, sending me to one another, hoping that someone else will come up with a diagnosis. 

My rheumatologist, concerned about my continuing Vitamin D deficiency despite megadoses of supplements, decided to send me to my endocrinologist. 

The internist thought that was a good idea because my thyroid levels were fluctuating widely and we couldn't figure out why. Maybe it's connected, she said.

So I go see the endocrinologist, who, by the way, had a three month wait for an appointment despite the fact that I've seen him since 2003. By the time I get in with him, my thyroid levels have stabilized and I've attributed the fluctuating levels to using a generic of Levoxyl. (I know, I know -- generics are supposed to be equivalent to their name brands. But thyroid drugs are notoriously fussy.)

So, the endocrinologist expresses major concern about my stagnant Vitamin D levels too. He decides that the problem must be an absorption issue, and wants me to visit my gastroenterologist. 

But the gastroenterologist did an endoscopy earlier this year (I think -- I guess I'm not sure of my dates now) with multiple biopsies looking for celiac disease as an explanation for my low iron stores (despite oral supplements) and my Vitamin D deficiency. I didn't have celiac disease. I guess he could do a colonoscopy with biopsies looking for absorption issues in my intestines, but wouldn't he have suggested that back then if he thought it was a good idea? After the endoscopy, of course, he referred me back to the rheumatologist

(I left voicemail for the gastroenterologist's scheduler because I'll be a good little patient and go consult with him as ordered. That was Tuesday, and I still haven't heard back. I guess I'll need to call again next week.)

Anyway, I feel like I make the endless loop of specialists as they pass me back and forth. Do they really think one of their colleagues will suddenly have a brainstorm and figure it all out? I mean, I guess that is the hope, otherwise there's no point in seeing any more doctors. 

I'd just like the endless loop of Hot Potato to end.


Friday, November 13, 2009

OT: A Fun Way To Earn Prizes While Searching The Web

I thought Swagbucks was a scam when I first read about it. And it may still be a pyramid scheme of sorts, in that people who refer others to sign up, profit from it. 

But since there's no cost to participate, and I have definitely received the prizes I earned from my own searches, I thought I'd mention it here in the hopes that others might enjoy it.

Disclosure: If you use the link I provide below to sign up, I will receive extra Swagbucks every time you earn one for your first 100 points. You can also go directly to the Swagbucks site and sign up without using my referral link.

So here's how it works: You can register at Swagbucks. Initially, all you have to give them is an email address, but after you collect enough points to collect a prize, you'll need to give them a snailmail address as well. 

Then you simply use their search engines to do searches. The search engine is based on the Google engine, but you don't get the identical results you would from using Google. So I use Swagbucks first to search, and then if I don't find the best results, I sometimes switch to Google and check it as well.

You won't earn SwagBucks every time you search. It's allegedly random both when you receive SBs and the quantity you get when you get them. Honestly, I rarely get more than one SB a day, but I also don't search constantly through the day either. I get enough SBs that I manage to earn an Amazon giftcard (45 SBs) every five to six weeks.

There's lots of other prizes you can apply your Swagbucks to if you'd rather, but I think the Amazon giftcards are probably the best value for my time. 

Anyway, I love getting something for practically nothing. And I don't know how SwagBucks' business model works, but earning points for doing searches I'd be doing anyway is pretty great to me.

(Helpful hint: I seem to get the bulk of my SBs by clicking on "next" for the next page of links.)

And thanks to anyone who signs up using my link! 

Thursday, November 12, 2009

Thankful Thursday

One of the current memes floating around Facebook is to promise to post something you're thankful for each day of November. I haven't taken that challenge -- NaBloPoMo is plenty challenge for me! -- but I am making an effort to count my blessings.

And I've got a lot of them, starting with a great husband and the best kid on earth. :-) 

Other random things I'm thankful for include:
  • My home. We've been having a lot of thunderstorms lately, and every time Ellie's eyes get big and she comments on the thunder, I remind her how lucky we are to have a home that shelters us from bad weather.
  • Our resources. Sure, we've been hit by the poor economy like everyone else, but Scott still has a job and we're making ends meet. That's a huge blessing these days.
  • My medical team. Sure, they haven't figured out exactly what's wrong with me or how to cure it, but they take me seriously and never suggest that it's "all in my head." 
  • The public library. Multnomah County Library is one of the busiest in the U.S., and I don't know how I'd have kept my sanity throughout this illness if it weren't for the library. I get books, movies, TV on DVD. And they have a fabulous service for people like me who are housebound, disabled or sick and can't go to the library. Every other month, they bring me a crate (sometimes two!) of books and DVDs that I've requested, and pick up the ones they delivered 60 days earlier. 
  • The chronic illness community on the Internet. I've made so many friends and found so much support from folks dealing with their own health issues. It just means so much to me to know that I'm not alone in my problems. 
  • Touchstone Preschool. If I hadn't gotten sick, Ellie would have attended a very good preschool at our synagogue, and I'm sure it would have been a good experience. But their program is only 2.5 hours a day (9-11:30 a.m.), and it wasn't a possibility once I got sick. I cried over that because it was one more thing my illness took away from me and my family. But you know, things have a way of working out: I love the school Ellie ended up at; the program is so good, with everything from PE to Spanish classes included; the teachers and principal are wonderful; the location is great for Scott to do dropoff and pickup on his commute. And when I told the principal recently that I considered Touchstone to be one of the silver linings of my having gotten sick, she confided that she didn't think 2.5 hours a day would have been nearly enough for Ellie. And you know, I think she's right.
  • My extended family and friends, who have been supportive and understanding.
OK, I know there's more I'm thankful for, but that's all that comes to my tired mind right now.

Meanwhile, I want to share a link to a cool website that will let you choose a card and have it sent (for free!) to an active-duty military person. Those of you who know me well know I'm against the wars in Iraq and Afghanistan. But I still admire and appreciate those who volunteered to serve in our military and are doing their best over there in what I consider a bad situation. The site is run by Xerox and is called Let's Say Thanks. Take a few minutes and send someone a message letting them know that we haven't forgotten them over there. You don't get to choose who receives your message, but you can either choose one of the suggested messages or write a personal one (choose other at the bottom of the list) and sign it with your name and hometown.  

Wednesday, November 11, 2009

The Little Things

I was coming home from acupuncture on Tuesday, feeling tired and a little bit sorry for myself because I felt so cruddy, and then I looked up while at a stoplight and saw something I hadn't seen in a long time: A rainbow. 

(Disclosure: This is a random photo found on PhotoBucket and not the rainbow I saw.)

There's just something uplifting about seeing a rainbow. Suddenly, I had a smile on my face and was feeling more hopeful. Which, if you're the religious sort, is exactly what rainbows are meant to make us feel. It took me a little bit out of myself, which was just what I needed.

Hope you all are having a good Wednesday. 

And don't forget to say thank you to a veteran or active-duty military type. Whether you support the wars in Iraq and Afghanistan or not, we should all support those who are putting their lives on the line and/or who did in past wars.


Tuesday, November 10, 2009

Thank Goodness for Gadgets

Gadgets make life easier for everyone, but especially so for folks with chronic illnesses. 

Getting a laptop made a huge difference in my life, making it possible for me to be online and in touch with friends and family more frequently than I could handle sitting at my desk and using my desktop computer. The laptop really helped lessen my feelings of isolation in the early days of my mystery illness.

My newest gadget is a headset for my phones. I know it's not new technology or anything, but I'm hoping it will make it easier for me to stay in touch with people via phone the way having a laptop made it possible to keep up with email. (Except, of course, that I'm not anywhere near caught up on my email ... but that's another issue.)

There have been too many times when it just hurt too much to hold the phone, and I'm hoping that the headset will take care of that problem for me. Of course, it won't take care of the fact that talking itself tires me out, but until I learn to be telepathic, I'm not sure how to get around that issue.

So what gadgets make your life easier?

Monday, November 9, 2009

No News Is Good News, Right?

This is definitely one of those posts that only exists because of NaBloPoMo!

Essentially, I've got nothing to say. Ellie is staying home from school today (Monday) and we're hopeful that she'll be able to go back to school tomorrow, but she needs to be fever-free for at least 24 hours, so we'll play it by ear.

We're working on our applications to the various private schools we're applying to, including (in no particular order) Portland Jewish Academy, Catlin Gabel School, Oregon Episcopal School and Touchstone Elementary. Two of them, Catlin and OES, require "parent questionnaires" that I'm currently stressing about. 

Oregon allegedly has the second highest class sizes in the nation, and Scott and I not happy with the lack of physical education, music and art in most of the Portland Public Schools. And then there was the article in today's Oregonian about how great it is that more Oregon students are passing the state math tests because teachers are focusing the classroom on the kids who learn it the slowest.

Ok, so besides not really having anything worth mentioning here, I also have a killer headache. So I think I'll cut this ramble short.

Sunday, November 8, 2009

Why Can't I Act Like A Child?

I consider it a huge blessing that Ellie is generally as healthy as one could wish for their 5-year-old. It's rare that she has more than mild cold symptoms. 

But watching her when she's not feeling well, I wonder why sick kids act so differently than sick adults. 

Scott theorizes that it's because kids haven't learned self-pity yet. 

But Ellie is so melodramatic in her normal life about every little thing she thinks is bad or unfair that happens to her (or anyone else, for that matter!), I'm not sure I buy that theory.

I know running a fever feels cruddy no matter how old you are. And while Ellie is certainly more clingy and less energetic when she's sick, she still totally gets into playing and pretty much acting like a normal preschooler. 

On Saturday, she spent a chunk of the afternoon drawing and coloring butterflies, and then cutting them out. (Using a scissors is very exciting these days, and Ellie has gotten pretty darn good at it.) She still played with her collection of My Little Ponies, and had her markers hold a debate with each other. 

Other than going to bed a bit early, and perhaps sleeping a little later than normal in the morning, her sick days look an awful lot like her healthy days. If anything, it's our reaction to her that changes more than her behavior: We're a lot more likely to approve more television watching than normal when she's sick, and we're more likely to pamper her.

I know there's a huge difference between a brief acute illness, like a bad cold or flu bug, and debilitating chronic illness. But I find myself envying how little she allows feeling sick to affect her life. She doesn't curl up on the couch under a blanket or stay in bed with a book and some favorite toys. She just keeps being a kid and doing a kid's full-time job, which is learning through the work of play. 

Now if only I could figure out a way to translate her example into my situation ...

Saturday, November 7, 2009

Best-Laid Plans, And All That

Scott and I had plans for yesterday (Friday).

In fact, we had too many plans -- a woodworking show, a major rummage sale -- completely unrealistic for my stamina these days. 

But there's nothing wrong with wishful thinking, right? 

What's the saying? Something like, "when people plan, G-d laughs." 

Sure enough, when Ellie woke up Friday morning, it seemed like a normal day in that she wasn't eager to get out of bed.

At breakfast, she asked him to take her temperature, even though she said nothing was hurting. So at 6:30 a.m., she was at 100.5 degrees, which is exactly high enough that state guidelines say kids are too sick to go to school.

And the longer she was awake, the more clingy she got. By noon, her temp was up to 103 degrees, and we were glad we'd kept her home from school. 

Well, so much for having a date with my husband. 

I'm thinking I jinxed us because when I called our regular babysitter on Thursday evening to see if she was available to come over this afternoon, I told her I thought we were finally (mostly) healthy. I'm sure that doomed us to one of us getting sick again! Needless to say, I had to call her last night and tell her that, well, we'd love to have her over to play with Ellie but she probably doesn't want Ellie's germs. And sure enough, she didn't.

You know how sick the poor kid is? Sick enough that she asked, pretty please, if she could go to bed early. Sick enough that even though she desperately didn't want to take a bedtime dose of ibuprofin, she finally agreed, reluctantly, when Scott promised that if she'd just take the pills, she could go straight to bed. 

Not exactly typical of a not-quite-5-year-old, who normally will insist she's not even remotely tired right up until she crashes and burns. :-) 

Here's hoping she's feeling better soon, and it's not the H1N1.

Friday, November 6, 2009

The Latest "Lifestyle" Drug

It's that time of year again -- open enrollment for those of us lucky enough to have employer-sponsored health insurance.  (And I'm very grateful to be among those who do.)

And for the third year in a row, my health insurance will be changing. (On a positive note, I've decided that it's a Good Thing since if we had the same insurer for decades, I might actually reach that lifetime maximum benefit limit someday.)

Of course our premiums are increasing in January, as will our co-pays. That's not a big surprise.

What did surprise me was to find out they had completely revamped our prescription coverage. I'm happy to see a $2,000 out-of-pocket maximum on drugs -- first time I've seen that! -- but was shocked to find out that allergy medicines are being categorized with drugs like Viagra and Rogaine as a "lifestyle drug." 

And "lifestyle drugs" are not covered by that out-of-pocket maximum, nor are they covered by the three levels of drug co-pays. Instead, I'll have to pay 100 percent of the "discounted rate" for my allergy medicine.

I realize that may be no big deal for some people. My husband, for example, takes allergy medicine for two to four weeks out of the year, tops. He has a grass-seed allergy, which is admittedly aggravated by our living in the valley that claims to be the grass seed capital of the world.

But me? I need allergy medicine to function. My allergies are year-round and very intense. I always roll my eyes at people who say, "Oh, yeah, I've got a dog/cat/hamster/parrot. Just take a Claritin/Zyrtec/Benedryl!" Uh, yeah, I'm already on the maximum dose of antihistamine-decongestants, and I'm still reacting this intensely to your beloved pet. It's just not that simple for me.

Heck, when I had an allergy test last spring to the pneumonia vaccine (which I reacted badly to back in 2000), I ended up making repeated trips to the immunologist because if I followed directions and didn't take my allergy meds, I couldn't pass the lung function test to get to do the allergy testing. 

I finally lied to the doc that I'd been off allergy pills for the required five days and crossed my fingers when they did the histimine test before the actual allergy test. And of course, I instantly got a huge welt on my arm, which the nurse said was good: "See, if you'd been on your allergy meds, you wouldn't have had any reaction at all." Yup. Sure. Whatever you say. ;-)

For me, allergy medicine is a lifestyle drug only to the point that breathing is a lifestyle choice. And I have to admit, my lifestyle has greatly improved since the improvements in allergy medicines in the '90s. (Actually, I don't know when the allergy meds improved exactly. But that's when I was finally a grownup and got to discuss my own health with doctors, and that's when they started giving me new drugs rather than the ones I'd been on since childhood that worked minimally for me.) 

I'm sure it also helped that I finally wasn't living in a smoker's home, but that was around the first time I could get enough air while breathing through my nose and wasn't forced to be a mouth breather anymore. (Although it was a tough habit to break and took many years before I became accustomed enough to do it without thinking about it.)

Sigh. I guess I'll find out how this hits our budget eventually. They aren't disclosing, yet, what the "discounted rate" for the various lifestyle drugs will be. 

I know it's an attempt to force people to buy the cheaper (for the insurance company) over-the-counter allergy medicines rather than choosing prescription drugs. And I understand that to keep health insurance remotely affordable, it can't cover every single drug or procedure. But boy does it make me grind my teeth to find a drug I need to keep breathing labeled a "lifestyle" drug. :-(


Thursday, November 5, 2009

Patients For A Moment

The biweekly blog carnival Patients For a Moment is up at Everything Changes

Kairol did a fabulous job yet again, creating themes for the various contributions. It's a great collection of blog posts by, for and about patients with topics ranging from what it's like to be a statistic (the one in X who XYZs)  to how to handle life in the "grey area in between the everyday and the extreme" (written by one of my favorite bloggers, Laurie at A Chronic Dose).

Please go check out this edition of PFAM. Now that I'm blogging again, I hope to contribute something to the next edition.

Wednesday, November 4, 2009

(Almost) Wordless Wednesday

We trick-or-treated at the local mall, where Ellie was over-the-moon to discover a Hello Kitty store had opened near the food court. Everything she saw, including the costumed staffer who was passing out candy, she wanted. She picked out a little "princess" Hello Kitty plushy wearing a small gold crown, a pink tutu and ballet slippers. (And since she was in costume, we got a 10 percent discount, always appreciated. :-)

Tuesday, November 3, 2009

Momentum: Losing It & Getting It Back

I've lost momentum somewhere. 

I suspect it's probably normal, especially nearly 2.5 years into a mystery illness. 

I had a recheck with my cardiologist last week. No real update, other than that he increased my dosage of Florinef since it seems to be helping with my dizziness/fainting. 

I really like Dr. M. But when he tried to be reassuring and told me, "Most people that have these kinds of symptoms get better within a few years. It just seems to go away," I questioned him about that claim.

Turns out, he's assuming that patients are better when they stop coming to his office. They just kind of fade away, he says. 

I smiled and nodded, because he's a nice man and I didn't want to puncture his balloon. But while I'm sure some patients do, miraculously, suddenly get better on their own, from the blogs I read and the folks I've exchanged email with, I fear that more common is that people stop going back to doctors who don't know what's wrong with them or have any way to treat it. 

Heck, I've done it myself with my gastroenterologist and with physical therapists. 

And honestly, lately my search for a diagnosis and/or treatment plan seems futile. The doctors all agree that something is wrong with me -- no one has accused me of malingering or that it's "all in my head" -- but they're not at all sure exactly what it is. And my treatment consists of trying to manage my symptoms, mostly with narcotic pain relievers since my stomach can't tolerate NSAIDs. 

Although the cardiologist told me to come back in six months for yet another re-check, I don't think I will. What's the point? There's nothing he's found wrong with my heart other than that it beats faster than it should. And that's reassuring, to a point.

But what's the point in going back, paying yet another co-pay and costing my insurance company even more money? My theory is that doctors never really say, "This is as good as it's going to get and there's nothing else I can do." So they keep telling me to come back, usually at longer and longer intervals, "just for a re-check." 

I assume it's partly a CYA thing that the don't want to have missed something and that's why they keep wanting a patient to return. I don't think it's just a revenue thing, but that's always possible too. 

Meanwhile, I lost momentum here on the blog too. And it's weird -- I kept wanting to get back to posting but in addition to the series of viruses I had that kept me laid low, the longer it had been since I'd posted, the harder it was to actually start writing again. I even ducked emails from Duncan Cross reminding me (and other past contributors) of deadlines for the Patients For A Moment blog carnivals. I'm sort of grateful to NaBloPoMo since it was incentive to jump back in and make a commitment to do so regularly. Otherwise, I don't know. I might have ended up letting the blog go dark. :-/

And I've kind of been that way about a lot of things. I can't remember the last time I was caught up on more than a handful of the blogs I (try to) follow. I wouldn't blame some of my email penpals for giving up on me entirely since I've been horrible about keeping in touch. The same goes for way too many of my local friends. And the kind folks who have left me comments here on my blog.

It's just hard to keep on top of everything when you have so little energy. Sometimes I feel like I'm drowning because there's so much I want to do and need to do, and I just can't keep up.  So the bare minimum gets done to keep my head above water.

Sigh. This is turning into more of a whine session than I intended. Sorry. :-) I probably need to talk to my doctor about tweaking my anti-depressants again since I'm so melancholy. Although I think simply getting over these bugs would go along way toward helping my mood. But at this point, it's hard to tell what's a virus/acute illness and when it turns into my new normal. 

Thanks for reading. :-)


Monday, November 2, 2009

Encouraging Fortunes

I don't believe in astrology. I don't believe in tarot cards or psychics. 

But for some reason, I get a warm fuzzy feeling when my fortune cookies offer something that feels like it could possibly actually fit my life. Or my family's life.

We had takeout from our favorite Chinese restaurant for dinner tonight, and I'm crossing my fingers that the fortunes in our cookies will come true. 

Ellie's fortune: "You bring sunshine into someone's life."

Well, I'm not sure that's a fortune per se, but she certainly brings sunshine into my life, and Scott's as well.

Scott's fortune: "Your hard work will soon be rewarded."

His reaction? "Yeah, right!" (in a very cynical tone of voice) But it's true that, for many months now, he's been working very hard lately at the office. While it's true that his company probably isn't going to financially reward anyone anytime soon with bonuses, I can still hope that he gets the promotion he has long deserved. (And probably would have had already if the economy hadn't gone sour.)

My fortune: "An unexpected payment is coming your way!"

My first thought was: "Ooh! Maybe I've been approved for disability already and the SSA is sending me a check for back payments!" 

Somehow, I don't think that's too likely to have happened with no word from the agency! 

But I'd sure be thrilled if some payment was winging its way to me right now. 

Sunday, November 1, 2009

NaBlogPoMo Time Again

Yep, it's the so-called National Blog Posting Month (NaBloPoMo) again!

And as in past years, I will endeavor to post daily for the month of November, 30 posts in 30 days.  

I know I've been MIA for a couple months, and I'm sorry about that. I appreciate those of you who have reached out to contact me and see how I'm doing. I think -- and hope -- I'm finally over a string of viruses that laid me low. (Can I just say I'm looking forward to the day when my daughter outgrows this petri dish habit of catching every germ she comes into contact with and bringing it home to me? :-)

Thanks for sticking with me!