Today is Nov. 30, and this is the 30th day in a row I've managed to post. Clearly some were better than others, but I met the challenge. Whew! Meanwhile, please take a look over at The Queen of Optimism for the latest call for submissions for the next Patients For A Moment blog carnival. She's looking for posts on your must-have list of supplies, tools or other items that help you make it through your life with whatever type of chronic illness or level of disability you may have. Not the more nebulous things like love, support from friends and family, an optimistic spirit. But those real, physical things that help you get through the day. Submissions are due by the end of Sunday, Dec. 5.
I'm working on my submission. Why don't you work on yours, too? :-)
Oh, and if you're inspired to do daily blogging, for the fun or the challenge or whatever, you can sign up here to do it for December. As for me, I think one month a year is about all I can manage!
This is so tacky, I can hardly believe I'm doing this, but here goes ...
It's cyberMonday, as y'all must know. Please, if you're planning to order from Amazon and aren't already supporting someone else's site by using their links, please consider using mine.
It's anonymous -- I won't know who used the link and bought something and who didn't. It doesn't add anything to your cost, but I'd receive a small percentage as commission because I'm an Amazon Associate. Meanwhile, let me share a deal on a site I don't profit from at all: Lovable Labels has a one-day only 20 percent off deal for any orders made today. Use the code cybermonday2010 at checkout. (Be sure to click on the appropriate flag at the top of the page -- American or Candadian -- so you get charged properly.) I bought them initially for Ellie's stuff, but I started using the labels on my stuff too!
Helpful hint: Ask them to put your phone number on the label as well as your name. That way when you leave something somewhere accidentally, the person who finds it can actually call you and tell you they have it! I've been a customer for ... four years now, I think. I took advantage of today's deal to order some labels with my name on them instead of Ellie's. :-) So while they're great if you've got kids, I think they're great for adults too, especially if you're like me and get that annoying brain fog sometimes. I'm constantly leaving my water bottle in public places, but it keeps coming back to me since I've got it labeled! Thanks, and have fun shopping today!! I love the online deals for those of us who can't get out to shop (or simply don't want to deal with crowds), and today's the prime day for deals!
I used to think I could babble endlessly on virtually any topic. But now I'm really just tired of the pressure of having to post every day. Which means, of course, that after Nov. 30, you probably shouldn't expect to see any posts from me for at least a week. :-) Now that Thanksgiving is behind us, I need to get Chanukah figured out, and Ellie's birthday party, too. That means I have to make a decision (soon!) on whether to push her party into January, like we usually do, or consider having it during winter break. I'm mildly tempted to schedule it for the daytime on Dec. 31, especially since most of the school vacation programs are closed that day so most parents will be SOL and be off work that day anyway. Might as well take the kids to a party and burn some energy off ... And of course I've got plenty to do with wrapping Chanukah (and Ellie's birthday) gifts. I've thrust several things at Scott that he needs to wrap up so Ellie has something to give me for the holiday. (She and I went to a Chanukah fair at our synagogue and bought gifts Ellie thought she'd like to give Scott, and also picked out a couple things she wanted to give me. I promised to forget immediately what they were. ;-)
I just this weekend ordered our holiday cards from Costco (best deal on photo cards I've ever found as long as you can find a design in their limited selection that you like), but am not confident I'll get a holiday letter written, printed and stuffed into addressed envelopes before Chanukah is over ... but c'est la vie. I figure I'll be doing fine if they get to people by early January. :-)
I've got so many other things on my to-do list, including just having some downtime, which sounds very appealing right now. I hope all of you enjoyed your long, holiday weekend! (Well, I know I've got some non-American friends who read this who did not get a long holiday weekend, but hopefully managed to enjoy their regular weekend anyway.)
So, outside of the U.S., when do retailers kick off the holiday shopping madness? I'm assuming that Black Friday probably occurs at a different date than here in the U.S. So how does that work? I'd love to hear about it!
I always knew it was good for my mental health to count my blessings regularly.
Especially with a chronic illness, it's way too easy to focus on painful joints, all the things I'm not able to do anymore, the medical bills, etc. So although I believe there is real value in venting occasionally, sometimes it takes a conscious effort to remember and focus on all the things in my life that are good. And there really are a lot of them!
So I was tickled when I found a Wall Street Journal article that suggests that people who are grateful actually live longer, have more energy and are healthier.
So apparently things like the power of positive thinking and doing gratitude lists really can work. Maybe? At least it's something that's (partly) under our control.
We had an extra special Thanksgiving this year at the home of some good friends, whose son Ellie is planning to marry. We laugh at the "betrothal" but all four parents have agreed that we'd love to be related by marriage if they still feel this way in 20 to 25 years. :-)
It was really pretty cool -- we brought a lot of food (two desserts, a cider apple cake and an amazing bread pudding; garlic mashed potatoes; broccoli, which we steamed at their house; Scott's favorite homemade cranberry relish; and something else I'm forgetting), and there was another guest who made an amazingly good cranberry dish that was somewhere a relish and a sauce as well as a homemade pumpkin pie. That last bit doesn't sound all that impressive until you know that she started with a an actual pumpkin! There was turkey of course, as well as at least three types of salad, including one made out of brussel sprouts that surprised me by being pretty tasty with the dressing someone had made for it. Good food, good friends -- what else can a person ask for when it comes to a holiday meal? There was no stress (for me, at least :-), no melodrama, just a good time had by all.
I hope your Thanksgiving was as wonderful as ours! Meanwhile, we skipped all the Black Friday sales (who has time/energy to go fight the crowds? I didn't even have the energy to do the online sales!) and had a fairly relaxing day. Hope y'all had the same or better. :-)
Ellie is thankful for glitter glue, Ellie B. (a kindergarten classmate), friends and family. I have a sneaking suspicion that the last two were written down only under great duress from a teacher. ;-)
Brittney asked people to blog on the ways they give back for the current edition of Patients For A Moment. I wanted to participate PFAM, but felt at a loss because really, how do I give back?
I don't really have a good answer for that. I make charitable donations, of course, as our budget allows, goods more than dollars, but we do our best. When I'm able, I volunteer in Ellie's school library a couple times a month. I've been trained in how to put protective covers on new books, but mostly my presence just allows the librarian to actually have time to go have lunch. It's not much, and sometimes just the sheer pressure of having to get dressed and look reasonably presentable is taxing, but I try. I think it's good for both me and for Ellie, in that I'm setting an example of volunteering and demonstrating that I think school (and libraries/books) are worthwhile despite my limited energy. I don't volunteer in the classroom because it would be way too much for me -- being around groups of people is enervating for me, and kids brimming with energy even more so.
The community I always wish I could do more to give back to is the chronic illness community on the blogosphere and other parts of the web. I do my little bits, trying to offer support and encouragement to others I come across in blogs or other places. I also try to help educate others by sharing links on Facebook or Twitter. But it's not much, and I'd like to do more. But I'd have to figure out what else I can offer, and time/energy spent pondering that is time/energy I don't have to offer my family and the communities I do participate in.
Anyway, go take a look at Brittney's edition of Patients For A Moment, and think about the ways you give back to your community, whether it's your neighborhood, your school, the corner of the Internet's many online communities you inhabit, or more. She received several interesting contributions that are worth your time to read. And keep an eye out for the next edition of the blog carnival, which will be hosted by my buddy The Queen of Optimism.
Meanwhile, I hope all my American readers have a happy Thanksgiving, and that those who don't celebrate it still have a good day filled with many blessings.
I learned a key lesson at the endodontist on Tuesday: I need to remember to ask medical types to explain the nitty-gritty of procedures I'm unfamiliar with.
I knew the essentials involved in a root canal, but I didn't know that it would involve a dental dam and a doohickey that, while smaller than a bite block, still forced me to keep my mouth farther open for more an hour that I'd expected. It's tiring and painful, and I wish he had explained those things to me ahead of time.
Other than the dental dam that didn't allow for me to fully rest my jaw at any point, it wasn't really any different than having regular dental work done. So far, I still feel like I have an achy tooth, but that's most likely just the collateral damage that all dental work creates: inflammation, sore muscles, etc. So now I just have to wait, let it all calm down, and then have the permanent crown put in place of the temporary one.
Meanwhile, although we have an unusual dusting of snow and it's way colder than normal for a Portland November, Ellie got her field trip and I made it to my appointment. That means life is good, right?
I'm beyond tired right now, so please forgive me for giving brief summaries. Firefox crashed on me after I wrote long responses to comments, so please forgive me for not getting to that either because I'm just too tired to re-type and I don't think Firefox will have saved them for me. :-(
I made it to the Winterhawks game Sunday night with Scott & Ellie, and ended up wishing I'd let someone else have my ticket. While it was cool to visit Scott's employer's skybox at the Rose Garden, the noise levels were overwhelming and left me with a killer headache. I held out as long as I could by leaving the box, which felt crowded, and sitting in the hallway. But even after I closed a bunch of other skybox doors, it was really loud in the hallway too (although much less than in the skybox) and it meant I was sitting right next to the door to the balcony where people go to smoke. That door was closed, too, of course, but made it smoky smelling (and cold) everytime someone went in or out. (Off-topic: I was amazed at the number of people who couldn't go a couple hours without a cigarette, even when smoking meant having to stand outside where there was no where to get out of the wind. They all cringed as they opened the door to go out, but no one turned back without getting at least a quick smoke in. I clearly have never been addicted to anything, because I couldn't imagine what would persuade me to go out there for 5-10 minutes with an inadequate coat, as almost all of them had.)
I did have to ask Scott and Ellie to leave before the game was over, but it was actually good timing because we got home at 7 p.m., which is the start of the bedtime routine and something we don't like to mess up on school nights if we don't have to.
We took Ellie to the pediatric urologist we were referred to, and we're going to keep a "voiding log" over the holiday weekend so we can more accurately tell him how frequently she's urinating. He doesn't think she has a tethered cord or other neurological problem, but he does think the problem is at least partly physical. Can't remember the name he had for it and the papers he gave me about it are in the car, so I'll share when I get a chance. We're considering skipping the pediatric neurosurgeon, but still have to discuss it farther.
We also had our first "real school" parent-teacher conference on Monday, and heard almost entirely good things. The things that weren't entirely glowing were, of course, things we were already aware of and mostly require the teachers to be aware of Ellie's personality and how it affects her responses to them. We got some confirmations on things we suspected too. :-)
And that's about it. Please cross your fingers for me that the weather doesn't keep me housebound. I may have some fears of my first root canal, but I'm so ready to have that tooth stop hurting so much that I'll be frustrated if I can't make my Tuesday appointment!
Ellie is officially out of school all week, but we'd like her to be able to attend the vacation day program we've paid for and not lose it to a snow day. It's a particularly good one with the kids going to the Portland Children's Museum. We don't currently have a membership there, so it's extra special fun when she gets to go.
There's a "prescription drug abuse summit" here in Portland today (Monday).
I only know about it because there was a big article in the local paper about a guy who developed chronic pain after a mugging, got addicted to his pain meds and then turned to heroin when he could no longer get the prescriptions.
Don't get me wrong -- I know that some people do abuse their prescription medication. I know that some people exaggerate or lie about their conditions to get prescriptions, either to abuse the drugs themselves or to sell them. Or both, probably.
But I also think there are way too many people out there who are suffering in pain needlessly because doctors are afraid to prescribe meds that might catch the attention of the federal and state agencies who monitor these things.
My copy of Melanie Thernstrom's The Pain Chronicles (I know -- I keep talking about this book, but it is so well written and full of pertinent facts!) should arrive on Monday or Tuesday, and I had to return the copy I borrowed from the library so I don't access to the statistics she cited.
But it was something like only 6 percent of people who reach age 30 without developing addictions to alcohol, cigarettes, illicit drugs, etc., are at risk of becoming addicted and abusing properly prescribed pain meds. It was an even smaller percentage who jump from their prescription drugs to abusing street drugs.
It's true that just about anyone who takes opioid medications for lengthy periods will develop a physical dependence and need to wean down to limit withdrawal symptoms. But that's also true of anti-depressants, Prednisone, and probably lots of other medications I'm not thinking of.
When I moved to Portland in 1999, I brought, among my other medical records, documentation of my 1995 on-the-job shoulder injury that required two surgeries and led the state of Washington to declare me permanently partially disabled with limited range of motion, limited strength and chronic pain. The first thing I was told by the doctors I tried to set up as my primary care docs was, "I don't prescribe pain medications."
OK ... I wasn't asking for any -- I was simply giving them my medical history. And it's not like they required any kind of proof or testing before prescribing my requested allergy, asthma and migraine medications!
I was, however, a bit relieved that I had stockpiled pain meds after my second surgery. Because while I didn't take Vicodin on a daily, weekly or even monthly basis, I did have pain flares periodically and I had learned the hard way about how pain spirals out of control if it's not treated properly before it gets really bad. (The difference between my first surgery, when the nerve block failed and the surgeon gave me inadequate post-surgery pain meds, and my second surgery two years later, with a successful nerve block and a doctor who prescribed adequate strength and quantity of pain meds, was amazing. But apparently very textbook because there are lots of studies that document that process. (That first shoulder surgery was also when I learned that I would never again tolerate a doctor who didn't have good communication skills and a willingness to answer my questions fully.)
I consider myself lucky that I have a good relationship with a good doctor, who trusts me to take medication appropriately. I apparently also don't set off red flags for her, since I know she has refused to prescribe pain meds for some other patients whom she believes are using them inappropriately.
But there are a lot of other people out there who are suffering needlessly, not because they abuse their meds but because their doctors are afraid. Writing too many narcotic prescriptions garners attention, and sometimes investigations. Licenses can be lost, and reputations are easily tarnished even if they are ultimately cleared of any wrongdoing. I remain unconvinced that making it harder for people with pain to get pain meds (by increased monitoring of prescription medications, the goal of the "summit" here) will make a significant difference in the number of drug abusers. What it will do, and what it has done in the past, is make more people suffer. ****
I don't feel like I am expressing myself here as well as I'd like. The downside to needing to post daily means that I feel pressured to get the post out quickly rather than taking an extra day or three to ponder and tweak what I'm trying to express. I do have strong feelings on the topic, mostly because I know too many people who have given up on the medical system and suffer at home.
It seems like I forget things almost instantly. The sad part? I can't even remember the example I intended to use when I started this post a few minutes ago.
I sent Scott & Ellie off to a birthday party for an 11 a.m. start. I woke up when I heard the garage door opening, peered at the clock to discover it was 11:40 a.m., and jumped out of bed to find out why they were home so early because surely there had been a problem. And there was: The party didn't start until 1:30 p.m.
These things happen to everybody, especially when they're tired or sick. And I have grade school friends on Facebook who could attest to the fact that I've always been a bit of a space cadet.
And certainly my pain and fatigue levels have had that effect on me since I got sick in 2007. It just seems lately like that brain fog has gotten thicker. It's probably just that I feel beyond exhausted even more than my "normal" since I've been sick. I suspect it's at least somewhat affected by my concerted efforts to participate more in family life and Ellie's school stuff.
I went to the pharmacy one day this week to pick up some prescription refills. I thought there would be three waiting for me, one of which I'd been late picking up and the prescription had expired on me so it hadn't been available last time I was there. I thought. But the pharmacy tech said no, it had been picked up two weeks ago. Oh, I said, maybe my husband picked it up and I didn't realize it. It must be on the kitchen counter or something.
Computers are amazing things though, and he was able to pull up an electronic copy of my signature and which other prescriptions I had picked up that day. The weirdest part? I remember getting the other meds. But I have no memory of getting that particular Rx ... nor where I put the bottle. :-/
The germies have caught up to me. I have apparently succumbed to a cold that Ellie has been working on for about a week now.
Somehow, in my essentially healthy 5-year-old at least, being sick barely slows her down. But when I catch her bugs, I feel like I've been hit by a Mack truck. (And I can say that because I once was -- albeit while driving a car, many, many years ago, which is why I survived. :-)
It's not a big deal, except that I'm feeling more miserable than normal and utterly exhausted. I'm hoping to improve after a quiet couple days so I can accompany Scott & Ellie to see a Winterhawks hockey game on Sunday evening. Scott's employer occasionally rewards a work team by offering its skybox. Last year (or maybe it was last spring?), Scott & Ellie spent a Tuesday evening in the skybox for a TrailBlazers basketball game, and Ellie expressed interest in seeing a hockey game sometime and showed more interest in the basketball game than we'd expected. (Although I think I found out a big part of the draw -- when Scott told her about the hockey game tonight at dinner, she started telling me about the awesome potato chips that were stocked in the skybox. "We should get them at home sometime!!!" she said excitedly. I told her chips are special occasion foods, and going to a Rose Garden skybox definitely qualifies as a special occasion. :-)
Hope y'all have a good weekend. As for me, I'll be curled up with a good book, a quilt and lots of liquids to try to flush this bug out of me.
My step forward is that I think I found a therapist today. I had an initial appointment, and I think I like her. I'm not entirely sure what, exactly, I'm hoping for as an outcome, but I figure it can't hurt to have a safe place to vent, if nothing else.
The three steps back is that I'm running on empty as I head into a weekend, which then heads into a holiday week with highlights of parent-teacher conferences on Monday with a 30-minute gap between the conference and when we need to be about 20 minutes away (in good traffic) for a visit with a pediatric urologist to discuss Ellie's recurrent urinary tract infections. Apparently pediatric urologists aren't in as much demand as pediatric neurosurgeons, because we don't see the latter until January. So that's Monday. On Tuesday, I have the joyful experience of my first root canal. I'm hoping I don't regret the decision to decline the endodontist's kind offer of Ativan to help relax me for the two-hour experience. Unlike my dentist, he doesn't offer nitrous oxide. But I don't want to need a ride, because that means dragging Scott away from work again. (Although the endodontist's office is fairly close to Scott's office ...)
What's next? Oh yeah, Wednesday. When I have my second appointment with the new therapist. Although I realized after I left my first appointment on Thursday afternoon that maybe it's not such a great idea to expect that I'll feel up to going and talking for an hour with someone after the two days prior with a four-day holiday weekend ahead. So now I have to figure out whether I should cancel that appointment, or go ...
But first, I need some sleep in a big way. I had a rough night Wednesday night and between my therapy appointment and going to Ellie's dental checkup (which I thought my presence was crucial for because I thought we were going to talk about putting in the retainer to correct her crossbite, but it turns out they can't do that until her 6-year molars are all the way in, which means not for another 12 to 18 months. Good night, and have a good weekend!
I had a super long day on Wednesday, so I'd like to say thank you to the folks who commented on yesterday's post. They were good, thoughtful responses, and deserve the same back from me but I just haven't had time/energy/brainpower to respond yet. But I will. I promise!
So, I overdid things on Wednesday, but instead of dwelling on the downsides I decided I would try, today, to focus on the things I should be thankful for instead. I'll try not to repeat too many of the items I've listed in other posts on the same topic. :-)
I'm thankful for better living through chemistry, and a doctor who believes in trying to improve my quality of life until she and the specialists can figure out a cure. I'm especially grateful for the Adderall she prescribed to help combat my super intense clinical fatigue. Interestingly, in Melanie Thernstrom's The Pain Chronicles, I learned that small studies suggest that when prescribed for people with fibromyalgia or autoimmune fatigue (like lupus, rheumatoid arthritis, etc), Adderall not only boosts energy but has an analgesic effect. I found that interesting because I always thought it was the fatigue that made the pain so challenging to cope with. I have a much higher pain threshold when I'm not feeling like I've been pushed beyond all limits.
I'm thankful for good friends who understand that, even though I sometimes seem to vanish for weeks or even months at a time when I flare, I truly value their friendship and are willing to pick up where we left off when I'm able. (Being a mom isn't at all the same as having a debilitating chronic illness, but it does somehow make many people more patient and flexible, somehow, with others as well as their kids. I know it did with me, and others have told me that it did with them too, although if it were true for everyone, there would probably be a lot fewer abused and neglected kids out there.)
I'm thankful that Ellie and I seem to be forging a closer relationship via our "date night" Tuesday evenings, and she's learning (again) that comfort from mommy helps too, even if Daddy is still her go-to parent. It really warmed my heart this week when, after several rounds of Don't Spill The Beans and Guess Who?, she gave me a hug and said, "I wish every night could be mommy-Ellie date night!" She doesn't really, but it felt really good to hear because it was very sincerely meant in the moment. :-)
Ok, I know it's not a long list, but back in my reporter days, three was considered the minimum number for a list of bullet items. So if it was good enough for The Associated Press, it's good enough for me. ;-)
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******You also can visit my Amazon "store" here to see some of my favorite related books and games. I can earn that tiny commission on anything you buy after clicking that link, even if it's unrelated to the products I liked enough to put on my electronic shelves (and I won't know who bought anything, but thanks if you do!).
I never could have made it as a hippie. I'm just too cynical, and was even in my most idealistic days in my youth.
So while I very much respect the two women who went to great effort to create this international blogging effort (which you can read about here, here and/or here), I couldn't bring myself to sign up with the two dozen or so participants.
Because, when it comes down to it, I don't believe that love beats hate for the people who are sensitive enough to be hurt by the haters, whether we are talking about the homophobic bullying that has led too many youths to kill themselves or we're talking about the kind of people who insist fibromyalgia is a "made-up disease" claimed by malingerers and people with chronic pain are all a bunch of drug addicts playing on doctors' sympathies to get their fix.
For some of us, and I include myself among the (at times) overly sensitive, it just takes that one hater, that one meanie, to wound us to the core. And for some reason, the cruel words or taunts are what we hear and remember most; those whispers can drown out an ocean of supportive, kind comments.
It's sad, but true. I wish it were not, and I hope that I'm wrong, because truly I would much prefer my daughter to grow up in a world where she, unlike me as a child, can shrug off the occasional kid who inevitably will say she is ugly or fat or stupid because she knows that the people who count are the ones who think she is beautiful inside and out and love her brain as much as I do.
(Fwiw, I never had trouble shrugging off the kids who insulted my intelligence. :-)
I have people on the outskirts of my life who roll their eyes when the issue if my health comes up, people who think I'm lazy or it's all in my head. Or that the intense chronic, clinical fatigue I have is similar to what they feel when they stay up for a night or two with a normally healthy kid who has a bad cold or the flu.
It hurts sometimes, like when my fellow MOMS Club board members voted, at a meeting I was too sick to attend, to move the board meetings to a time they knew was too early in the day for me to attend. It wasn't on the agenda, and they just took advantage of my absence. It was my last remaining social activity, and when I complained the only response I got was that the decision was unanimous. And these were allegedly my friends, whom I'd done a favor when I agreed to do a second term in a job no one else wanted.
Does "love" make a difference? Sure. I've written before about how grateful I am to have found the incredibly supportive chronic illness community through the blogosphere and other social media. It's a huge help with the sense of isolation that I felt in the early months of my illness, and I try to be supportive to others, too.
But I'm not convinced that the "love" will ever beat the "hate" until and unless we all stop letting the haters get to us. Although it doesn't always feel that way, it's our choice when we let the things people say or do (or don't do) to us upset us.
I'm not suggesting that people ignore bullying or hate speech. Of course, we should all object to it when we see/hear it, wherever that may be. But taking it personally? From a stranger on the Internet? That's just crazy talk.
And I can say that because I've been the one talking crazy, getting my feelings hurt when someone I don't even know directs their meanness to me via email or the comments section on my blog. It wasn't that long ago that I sobbed to Scott that a meanie, who doesn't even read my blog regularly enough to know my health issues, called me a bad mom for taking meds exactly as prescribed by my doctor. She told me about a former colleague who said she had chronic fatigue syndrome but turned out to be juggling a full-time job, full-time college and being a mom. Yeah, I wish that were the reason I'm beyond exhausted all the time; if nothing else, it would be better for the budget! :-)
Some things are just so much harder than they ought to be.
I spent essentially my entire functional period (and then some!) on Monday making phone calls and googling people to try to find a therapist who a) is in my mental health provider's apparently very limited network and b) seems like someone I'd be comfortable spending time with and discussing my personal life and situation.
Seriously, all day, as far as I'm concerned. I started as soon as I made it downstairs, at 11:30 a.m. and finally finished with an appointment set up at a little past 3 p.m. Mind you, this wasn't the first time I took a stab at it. I also tried several other times, starting about a month ago when I got authorization from our insurance company and a list of people they thought would fit my preferences.
After all that, I have an appointment scheduled on Thursday with someone who isn't quite sure she's a good fit for me, but hey, she called me back and she takes my insurance, including the "employee assistance program" benefits that will let me see someone six times with no co-pay.
So one down, one to go.
I still need to find an in-network therapist who specializes in kids for Ellie to see since we're not fully convinced that her bladder issues are physical and not behavioral somehow. Since we can't seem to get into her head, I'm hopeful that someone who really understands kids will be able to get into her head.
Wish me luck on that one.
The list of possibilities from the insurance company is even shorter than the one they offered for me, and of course the after-school appointment slots are what pretty much every parent chooses for their kid. Which means that so far, each one I've connected with (which is just two out of more than a dozen messages left) has only had slots available that would require me to take Ellie out of school for the appointments, something I'm not wiling to do on a regular basis.
Meanwhile, now I need to relax and rest up for the next thing on the list.
Back in the day, I hated Mondays like everyone else.
The first day of the work week was always a drag after a weekend. Everyone always drags on Mondays, right?
Even before I got sick, when I was staying home with Ellie, I ... well, dreaded is too strong a word, but I definitely preferred weekends when Scott was home from work and we had family time. But these days? It's Fridays I view with mixed feelings when they approach.
Mondays are something I look forward to because, after more activity during weekends than I generally have during the week, I keep my Mondays empty whenever possible for recovery. It's a rare Monday that I leave the house. I don't even schedule doctor appointments on Mondays unless it's absolutely necessary.
I hope all of you had a good weekend, and are having a mellow Monday, too.
Autumn's typical overcast, rainy weather has set in here in Portland, Oregon.
And while some people hate it, I appreciate it. One benefit for people like me who need too much sleep is that the overcast, gray skies make it very convenient for napping. Possibly too convenient.
I slept until noon on Saturday, and then when Scott and Ellie headed off to the community center to swim, I ended up going back to bed from 2:30 p.m. until Scott woke me just before 6 p.m. to tell me dinner was almost ready. I think I could have slept right through the night if he hadn't woke me up.
And that could have been a good thing. I'm trying to cut back on pain meds again -- although I go back and forth over whether it's needless self-torture to deny myself pain relief -- and of course as usual my body isn't cooperating, so my costochondritis in particular is flared up. C'est la vie, but sometimes sleep serves the dual purpose of addressing my fatigue and giving me some time where I'm not aware that I'm hurting. (Usually. Sometimes I have dreams about being in pain.)
I think I mentioned previously that I'm slowly digesting Melanie Thernstrom's book The Pain Chronicles.
If I were still a college student and into highlighting text, I think the vast majority of the book would be highlighted because so much of it seems noteworthy to me.
Here's a quote that made me stop to ponder tonight: "Like all chronic disease, chronic pain involves a bifurcation. There is the normal state, where you used to live, and you are conditioned to that state. Then you face a debilitating circumstance that lasts for months or years. When you're in that second state, you hold on to an expectation of that first life: you mourn that first life -- you want it, and want it a million times over. But people have to let themselves die and lose their old expectations. If they let it die, they can rise like a phoenix from the ashes and can have a new life. The doctor has to help them die and be reborn with a vital, rich life." --- Dr. John Keltner, a pain management specialist. (p. 209)
What do you think? Is that really what one has to do to "recover" from chronic pain -- completely give up on one's "first life," on ever getting back to one's previous life, in order to move forward enough to have a life that doesn't center around pain and illness? And how does that work, exactly, anyway? How do you die and get reborn in a non-religious sense?
I'm just plain out of words. When I was working as a journalist and I couldn't find exactly the words I wanted for a story, I'd just put in a dummy "lede" and keep writing. Eventually, I'd find the lede, and put it in the proper place but meanwhile, I'd have the bulk of the story written.
But there's a huge difference between blogging in this kind of blog and writing a news or feature story intended for newspapers. With only a couple exceptions in a 15-year career, I never wrote about me. And I worked hard to keep my opinions out of the stories. But this blog? Pretty much all about me and my family, mostly about me and my chronic illness. And while I could probably whine every day about which part(s) hurt worse that day, I prefer to limit my whining to the days I really need it. :-)
What else is there to blog about? I've read some interesting articles lately: NYT writer Dr. Pauline Chen (an MD type of doctor, fwiw) wrote about the need for doctors (and researchers, drug companies, etc) to listen to patients who have to live with the ongoing side effects of the "life saving" treatments they undergo.
NPR did a fascinating story on research results that show that doctors who are paid to give talks about drugs subconsciously start prescribing the drugs more frequently. Not shocking -- there's a reason why the drug companies hire docs for those kinds of talks -- and yet disappointing.
An AP article described that a detailed family medical history was a better predictor on whether people people were at high risk for various diseases than genetic testing.
A blog post at KevinMD aimed at other medical professionals reminding them what a blessing hospice can be, and that every patient deserves a pain-free death with dignity.
And an MSNBC.com story about a courageous surgeon who wrote a medical journal article about a mistake he made in surgery, and details the personal and system-wide errors that were made. Mistakes are made every day in hospitals around the country and around the world. The best way to combat them is to talk about them so everyone can learn how to avoid them in the future
Whew. It's harder than I remembered from previous years doing this. I feel like I'm plagued by writer's block, and for some reason seem to spend all evening finding other things to read/write/do instead of my blog post.
So, I made an appointment with the neuromuscular neurologist. Of course, he's booked until mid January, but it's not like anything in my situation is changing anytime soon. What else? Ellie is doing just fine. We're trying to figure out what (and when) to do for her birthday party this year. I seem to be having trouble making decisions lately, and the fact that Ellie's party hasn't been planned and organized by now is just more evidence of how much I dither lately. I can't even figure out where to have it; it doesn't help that Ellie keeps changing her mind between something really girly (like a ballet party) and something that she can invite boys to, too. Every time she starts to settle on something girly, she realizes it means she can't invite the boy she declared her future husband soon after she met him 1.5 years ago.
Total digression but too cute not to share: Ellie said she chose John to be her boyfriend because he was the same size as her. She's tall for her age, and towers over most kids her age. Even at her school, the folks in the office forget when they see her that she's a kindergartner and assume she's in second or third grade. She's just so darn tall for her age. Anyway, she literally meant the same size because when I asked about the only boy (or child, for that matter) taller than her in her previous class, she replied that "Andre was taller than me. John is the exact same size as me!" And he is, although her feet are a half-size bigger than his. Meanwhile, John's mom had the brilliant idea of telling the kids that broccoli makes them grow extra lots, so we both use it to encourage our kids to eat veggies by reminding them that the other one might be taller if they don't eat their veggies. Anyway, when we got together with John and his family last weekend, the first thing they both wanted to do was see if either was taller than the other. We put them back to back and yeah, they both seem to be the same height. But by the end of the evening, when we were saying good night and Ellie and John were hugging goodbye, Ellie asked John, "Will you still marry me if I grow taller than you?" He agreed he would, but I could tell he was going to be piling up the broccoli on his dinner plates between now and when we see him again on Thanksgiving. :-)
OK, so that's got to be enough rambling to count as a blog post, right?
Meanwhile, don't forget to say thank you to a veteran or current military person today! Happy Veteran's Day to my dad, my father-in-law and my Uncle Bob!
-------- p.s. Apologies to those I owe email/comments to. I'm horribly behind on everything except keeping up with my daily blog posting.
p.p.s. I wasn't kidding about spending all evening trying to blog but failing. According to Blogger, I started this post at just after 5 p.m., and now it's six hours later and I'm late to bed.
Everyone looks for different things when they meet a new doctor. For some people (I suspect mostly it's generally healthy folks), it's simply a matter of convenience: Is the doctor's office convenient to my home and/or work, and does the doctor work convenient hours for me?
When Scott and I look for pediatricians when I was pregnant, we looked at all those kinds of things. We ended up going with a pediatrician in a large practice that was relatively close to Scott's work so he could attend Ellie's appointments, but the two biggest factors that swayed me towards this doc was that my OB took her children to this pediatrician and the practice offered after-hours clinics every weekday evening and weekend mornings. And that's been huge for us, especially those weekend "urgent" appointments because kids have a knack for being totally fine until Friday evening or Sunday morning. Mind you, I would not have chosen this pediatrician if I didn't like her and think she would offer the level of care I wanted despite all the other pluses. But I know other parents who don't really like their pediatrician but stick with him/her out of convenience.
The topic of how one chooses a doctor, and what qualities are most important to other people fascinates me. Back when I was just a few years out of college, a co-worker tried seeing a psychologist for some help in relationship issues. I don't remember why, exactly, I asked her for her therapist's name, but I went to see her and continued for about a year. I loved that therapist, and the feeling was at least a little mutual because she said she had never had another client who actually did the homework reading completely and came back ready to discuss it thoroughly. Funny thing though? The colleague who gave me this therapist's name never really clicked with her, and didn't see her for long. Meanwhile, I've compared (and often found lacking) every therapist I've met to the one I liked way back when. So one person's ideal doc can be someone else's mediocre experience.
When I needed a topic to host Patients For A Moment, my favorite blog carnival started by Duncan Cross and now wrangled by Leslie, I asked folks what they look for in a doctor. I got some great contributions that I'm excited to share with all of you! So, read on ...
Brittney, from the blog The Road I'm On, has recently needed to find a new doc because she moved to attend veterinary school (wow!) and had to get started with a new primary care doc, something that can be very complicated for those of us with multiple chronic illneses. In her post, Quality Control, Brittney writes, "I wasn’t sure what I was looking for when I first met her, but now I know there are four things I should look for."
I love the metaphor of doctors as mechanics treating bodies instead of cars that Sandra Lee of the blog Always Well Within made in her post about The Perfect Doctor. And she's absolutely right when she says some are better than others and it pays to be selective (when possible) because you can always replace your car but there's no method for replacing your body. Yet.
Rachel, who blogs at the aptly named Tales of Rachel and is in the midst of reconsidering several of her doctors and took the opportunity to write about The Myth Of The Perfect Doctor? We all have to make decisions about our priorities, and it's true (in my opinion) that sometimes having one fabulous doc means you can settle for less than fabulous with some of your other doctors.
OK, so not that I'm picking favorites here -- everyone who contributed to this PFAM edition is totally awesome, really, truly awesome; I honestly mean it! -- but Lisa Emrich of Brass and Ivory is one of my particular blogger heroes. We recently came thisclose to meeting in person, but even though we didn't manage to cross paths, I was tickled to be in her general vicinity and find others who know her in "real" life think even more highly of her than I do from reading and emailing. OK, enough gushing now. :-)
Lisa, who writes about living with both multiple sclerosis and rheumatoid arthritis, writes in her post How Did You Find Your Doctors? that it would be too simple to attribute getting good docs to sheer luck, but circumstance do play a large role in our choices and outcomes.
Good reading, everyone! (And thanks to my contributors for their excellent writing!) The next edition of Patients For A Moment will be hosted Nov. 24 by Brittney at The Road I'm On. Keep an eye on her blog for the topic question, or look for an announcement here when it's posted.
It's one of those things I mentioned to my husband when we discussed getting married because I knew my dental bills tend to be expensive. Of course, in those day, I had no idea the other kinds of medical bills I'd run up not that much later.
I've always had bad teeth. My mom talks about noticing black spots on my teeth around age 2 that she assumed were food and tried poking at with a toothpick to dislodge. Turned out my baby molars didn't have enamel on the tops, and that was the start of many, many, many trips to the dentist. Thanks to a sadistic pediatric dentist (who I'm happy to say eventually -- long after I left his practice -- lost his license), I also have a lot of anxiety about going to the dentist. You see, my first dentist didn't believe in Novocaine, or any kind of pain relief. Finally, ten years after I started seeing him and many, many fillings drilled without any pain relief, the baby molars that had been cemented in somehow started to abscess when the permanent molars wanted to come in and the baby molars weren't getting loose and falling out. I still remember my mom's face when I came out of the office and way down the hall to where he required parent to wait (far enough away that parents couldn't hear the kids scream) and showed her the three molars he had pulled, each with full root attached.
I immediately started seeing her dentist, who was wonderful and kind and gentle, but the experiences I'd had from age 2 to age 12 have always made me tense up at the prospect of seeing the dentist and having anything beyond a regular cleaning done. I remain leery of confessing to tooth pain that might trigger the need for more drilling. I was less than thrilled when I was told last year that a couple of my very old fillings in my back molars were starting to deteriorate and my dentist recommended replacing them with crowns without waiting for the old dental work to break, which would be worse for my teeth and for me.
I put it off a year, but last month I went to the dentist to replace the first of the two fillings. I had a typical decent experience, and left with a temporary crown in place. I called a week later to report that the tooth was really bothering me quite a bit, but agreed to wait to see the dentist until my appointment for the real crown.
She said that because they found cracks in the tooth when they took photos to prove to my insurance company that the work was medically necessary (!), there was a 10 percent likelihood that I'd need a root canal. But when they took a new x-ray of the tooth, she noticed that my sinus cavity was inflamed and suggested that maybe I just had a sinus infection despite the pain being limited to the left side. Since I have chronic sinusitis, I wasn't entirely convinced, but it was true that I found it painful when I pushed on my cheekbones, which is what my internist uses to determine whether or not I'm infected so I called and reported what the dentist said and she prescribed antibiotics for me.
Meanwhile, the dentist referred me to an endodontist for evaluation. He went through a lengthy rigmarole of testing for various types of sensitivity and had some cool x-ray software and equipment I hadn't seen before that he used to show me why he thought I definitely needed a root canal, something I've gone out of my way to avoid in the past even when I probably shouldn't have. (He evaluated that tooth too and said I probably should but that it wasn't as urgent as the tooth I was referred to him for.)
Every time I think about procrastinating on the root canal, I get reminder twinges from the tooth in question so I'm guessing I'll be going forward with it.
On the upside, he's the guy who did my dentist's root canal a few years ago when she needed one, so I figure that's a fairly good referral.
Anyway, I have this to look forward to later this month. It's going to be a quite a week when it happens; we go see the pediatric urologist with Ellie that Monday, I have my root canal on Tuesday, and Thursday is Thanksgiving Day. I'm hoping I'll be up to chewing turkey by then! :-)
Sorry -- I'm sure there's little more boring than hearing me talk about my fears of dentistry and my need for a root canal. Feel free to blame this post, too, on NaBloPoMo! ;-) But please come back tomorrow (Nov. 10) for the next edition of Patients For A Moment (PFAM) -- I promise you that there are some amazingly good contributions worth your time to read!!
So, this is why I don't like the pressure of daily blogging. I mean, I made a commitment to participate in NaBloPoMo, and I will do my best to keep it. But really? Every day? I don't know how some bloggers do it, and not just for a single month a year! After Friday's excitement, the weekend was fairly quiet. We had a family date on Saturday with Ellie's betrothed's family, going to see the movie Despicable Me at a cool brewpub located in a former elementary school.
On Sunday, Ellie and Scott went off to attend a "bagels & books" event to celebrate National Jewish Book Month, while I stayed home to recuperate and rest. Can I just say I was more than ready for today to Monday, and to send my family off to work and school for the day so I didn't feel guilty about how much sleep I needed?
Ellie's stitches look like they are healing well, although she's reluctant to let us clean the area around the stitches with the dried, clotted blood. She has also found another place on her head that is tender, but Scott didn't feel a bump.
Well, now y'all know why I'm generally not a daily blogger. Sometimes, I'm just darn dull.
Sometimes I play the game of denial, that if I don't say/write something, then I can pretend it's not true and that everything is just fine and dandy. I guess I believe in the magic, or power, of words that way.
So here's something I've been procrastinating writing about because I'd rather not think about it too much.
I mentioned Ellie's MRI last month to determine if a tethered spinal cord is contributing to her recurrent UTIs. (Which, btw, are under control lately thanks -- I'm convinced -- to the prophylactic dose of antibiotics her pediatrician put her on.) We got the results impressively fast -- the pediatrician called me the following day in the late afternoon. (Why do pediatric test reports come back so much faster than adults'?) Unfortunately, the MRI was inconclusive, so Ellie has been referred both to a pediatric urologist and a pediatric neurosurgeon. Apparently her spinal cord is not tethered in an obvious way, but there were other abnormalities that prompted the pediatrician to call the neurosurgeon to discuss what she thought. And the neurosurgeon said to send Ellie over, so we'll go there on Jan. 6, the first available appointment.
From what I've read and heard, it's not uncommon for the radiologist to think a cord is not tethered, but the neurosurgeon to think it is. In my case, I've had two lumbar MRIs; one radiologist said it was tethered, the other one said it was not. The same neurosurgeon looked at both sets of images (without, I think, bothering to read the radiologist's report!) and said it was definitely tethered.
I guess sometimes you have to take a leap of faith when you decide whether or not to do what a doctor suggests. We're not ready to leap into surgery for Ellie yet, but we'll go and listen to what the neurosurgeon has to say, and we'll go see the second pediatric neurosurgeon in town and see what he has to say. And then we'll decide if we want a third opinion and should go up to Seattle or down to the San Francisco area for it.
Here's what the radiologist wrote about Ellie's spine that was abnormal: "There is mild narrowing of the neural foramina and the L5-S1 due to facet hypertrophy and a broad-based disk bulge." The pediatrician said that was very unusual to see in a kid Ellie's age. She said she has sometimes seen that in obese kids ages 10 and up, but that Ellie is definitely not overweight, much less obese, and so much younger anyway.
She also wants us to see a pediatric urologist, which has been scheduled for Nov. 22. And I'm looking into taking Ellie to a child psychologist, partly because we're not sure how much of Ellie's bladder/bowel issues are behavioral and how much are physical/medical. I'm hoping a therapist will help us get closer to the truth, and also that she will be able to talk to Ellie about these doctor appointments and, if we get to that point, the surgery itself. Hospital/medical stuff is just traumatic for kids, and however we can make it all easier and less worrisome for her the better.
What's the expression? Something like "When man plans, G-d laughs."
I didn't have huge plans for Friday, but I did have a To-Do list that included getting a shower and various other things that needed doing.
I woke up moving slowly as the weeks have piled on lately and my pain levels are higher than I can generally tolerate without needing meds. I was finally ready to hit the shower when Scott called me to say Ellie's after-school program had called him: "Ellie's had an accident."
That phrase for me lately means Ellie needs a fresh change of clothes, and I was sighing that she'd apparently gone through her emergency clothes at school and must need a new set dropped off. And then he finished the sentence with, "And they wanted permission to call 911 because there's a lot of blood, so I'm heading over to the ER to wait for her to come by ambulance."
It's good to know my husband sometimes panics as much as I do. :-) He'd dashed out without asking any other questions. I immediately jumped into clothes, skipping that shower I really needed, and headed off to the ER to meet them. It did cross my mind to suggest that one of us go to the school and one to the ER, but I just assumed if they were worried enough to call 911, it meant she was going to need to be transported.
Traffic was nasty, so it must have taken me 30 minutes to get to the hospital (and it felt like hours). Scott was pacing outside in the ER's ambulance drop off area when I got there, and I had just about enough time to park, gather my stuff and get out of the car when Scott got another phone call from the school to say that the paramedics had come and Ellie had a small, but deep, laceration that probably should get looked at but didn't need an ambulance ride unless we were set on it.
And we weren't, of course. We decided to leave one car at the hospital and drive together to the school to get Ellie. And of course, it's in the early part of rush hour by then and traffic was even nastier so what's a 15 minute drive in good traffic took closer to 30.
When we got there, Ellie was sitting in the office with a paramedic, the director of the after-school program, the school principal, and the school office first aid whiz (who did her best to soak Ellie's blood-soaked shirt after Ellie told her it was her favorite one -- wow!). They had given Ellie a clean shirt to wear, and while she wasn't her normal bouncy self, she was very calm and everyone was praising how great she had handled everything. (The paramedic told us we had an amazing kid, and I just had to agree!)
Ellie had fallen off the "tower" on the play structure and managed to hit her head on a metal bar on the way down. Ellie wasn't entirely sure of the details, although it could have had something to do with a red jump rope she had tied to something and might have been using to climb down, maybe. In addition to the cut on the back of her head, which required three stitches, Ellie also bit her tongue during the fall. At the hospital, she kept saying nothing hurt, but when we went to feed her dinner finally (at 8 p.m.!), she barely ate anything because she kept saying the food hurt her tongue.
So the accident happened at about 3:30 p.m., and the call to Scott must have happened within ten minutes, and he immediately called me. We finally got home about 8:30 p.m., did the quickest of bedtime routines (which still took 30 minutes, and I'm not sure if the dried blood got cleaned off her neck, back and limbs or if she talked Scott until waiting to do that until morning.
We'll be on the lookout for signs of concussion, but the doctor seemed to think she was low risk and I hope is right.
Meanwhile, I once again made good use of my gift shelf, grabbing a package of Disney fairy figurines to take with that she played with at the hospital, and when she was really scared of the stitches, I promised to reward bravery with an extra present at home, so she also got a (Disney) Jasmine doll that's Barbie size.
It's amazing what the burst of adrenaline when you think your child is injured can get you through, but man, the crash when the emergency is over is just ... draining. Off to bed for me ...