Wednesday, July 29, 2009

Patients For a Moment #4

The Fourth edition of Patients For a Moment takes the blog carnival on the road, with another great collection of blogs for, by and about patients.

There's a wide variety of topics, and an even wider variety of conditions being blogged about. But the more editions of PFaM I read and participate in, the more I understand that people dealing with diverse chronic illness have much more in common than they have differences, and that's an empowering thing.

This edition is hosted by Kairol at Everything Changes, a blog about living with and surviving cancer in one's 20s and 30s. Thanks, Kairol, for putting together a great blog carnival!

Sunday, July 26, 2009

Playing with Drugs

Only the kind prescribed for me, of course.

I finally broke down and started taking the antibiotic prescribed by one of my PCP's partners. I'd had some bacteria show up in my urine, and they did a culture to see which antibiotic would tackle it. By the time the results came back, my PCP was off on vacation to Hawaii (where her family lives, lucky her!) so it went through one of her partners.

I got a call from my PCP's nurse saying the other doc said the bacteria levels were pretty low, so he'd prescribe if I was having symptoms but otherwise could just wait and see. I had her fax a prescription over to my pharmacy, but then I waited to pick it up for over a week before deciding, you know, maybe I am having symptoms that could be attributed to a urinary tract infection. It wasn't the typical symptoms, but when do I ever do anything by the book?

So I started on Macrobid on Friday, and I guess I'm glad I did because I am feeling a bit better. I think I was having some kidney pain, although I wasn't really sure if it was back pain that had migrated. But it's gone now, which is Good. (As an aside, I hadn't ever heard of Macrobid before and was worried it was going to be one of the "new" antibiotics that was expensive, yet another reason for waiting to see if I really needed it. So it was a nice surprise at the pharmacy to find it had a generic that was cheaper than my normal co-pay for generic meds.)

Meanwhile, I put myself back up to 20 mg per day of Prednisone since the 10 mg wasn't cutting it, and that's helped my joint pain improve again, which is lovely.

The hot, hot weather here isn't helping though, even with our central air conditioning. I've always been a heat wimp, but since I got sick two years ago, I just melt in the heat and my symptoms flare. Good thing I don't live in Arizona or something! At least heat waves in Portland don't last too long ...

Wednesday, July 22, 2009

(Almost) Wordless Wednesday

aka The Master Bath Is Complete!

It took a bit longer this morning for the final touches, so I didn't get the additional sleep I was hoping for, but I'm thrilled both bathrooms are done! Woohoo!

And tomorrow, I plan to sleep as long as my body lets me.

Monday, July 20, 2009

New Week, New Dilemmas

I don't like being on Prednisone.

That seems to be a pretty universal sentiment, even among people who get great relief from it.

When my internist put me back on Prednisone last week, she gave me a recommended taper schedule but said I could play with it as seemed appropriate. And I did: I spent just two days at 40 mg/day before going down to 20 mg, which I correctly guessed would still be enough for me to feel benefits.

The problems with Prednisone are many. My main ones (currently) are that it makes me jittery without improving my energy levels, and it seems like it might be irritating my stomach. I don't seem to get the killer mood swings as long as I stay below 60 mg/day, but I'm definitely a bit more emotional even at smaller doses.

Since my stomach has seemed irritated, I thought maybe I'd try going down to 10 mg/day, which was the dose that Dr. T hoped I could stay on as a maintenance level.

And of course my joint pain has returned. Not as severe, perhaps, as it was before starting the Prednisone. But my experience has been that once it starts coming back, it just picks up speed until it's back full force.

So now I'm trying to decide if I should go back up to 20 mg/day, which I think is what Dr. T would tell me if she weren't in Maui on vacation. I wonder if I'd given my body longer at the 40 mg/day dose, if that would have made a longer-term difference. (It hasn't in the past, but who knows what it would do this month? Even getting any relief at 20 mg/day is relatively new.)


I hate being a medical experiment, even if I'm the one running the lab.


Demolition of the master bathroom floor is already completed! Can't wait until we've got a new floor put in there too!

Friday, July 17, 2009

Worth The Exhaustion

Look at my pretty new tile floor in our kid/guest bathroom!

(Wish I'd taken photos for a before shot, but you'll have to just imagine very boring, neutral vinyl and that's what it looked like.)

Now, I didn't do any of the work, unless you count choosing the tiles from a very poorly lit loading dock where they were on close-out. (They're Italian porcelain, and I'm told high end/high quality. But on close-out, they were $2 per square foot, so they were darn cheap too.)

Since Scott is overloaded beyond belief, he didn't do the physical work either (although he cleaned the bathroom, including the worst of kitty litter box residue, of the old floor so it didn't gross out our tile guy too much). We hired someone to come in and do all the work. We're putting the same tile in our master bath too, which has a mushy floor just outside our shower. (We've fixed the problem that caused the mushy floor, I hope.)

Since I'm almost always home anyway, what's the big deal about handling a workman in the house? It's not like I had to supervise or anything.

But I did have to wake up at what is for me the crack-of-early to let him in at 9 a.m. on Wednesday for the first day. I'd assumed I'd be able to catch a nap, but that was a lot noisier than I anticipated for him to rip out the old floor and move the toilet and such.

He worked six hours that day, getting the bulk of the tiles glued down. And I was feeling like a zombie long before he left a bit after 3 p.m.

He asked if he could come at 8:30 a.m. on Thursday, and I said yes while cringing. The occasional early-for-me morning is one thing. That was when it hit me that I'd committed to doing it for several days in a row.


So yesterday, I woke up in time to let him in (then waited for an hour while he was stuck at Home Depot picking up the right color caulk). As soon as he was in, I headed back to bed, where I slept until almost noon. Apparently it was the sound of him leaving that woke me up ...

I posted about it on Facebook in what I thought was poking fun at myself. And now, two days later, I'm still having a back-and-forth with a guy I dated briefly a million years ago (well, nearly 20 years ago) who insists, "
I figure any day when you can sleep until noon has to be a good day, no matter the reason why you sleep that late."

Spoken like a person who has never had a debilitating chronic illness or loved someone with one.

But for as much as that statement and attitude irks me, I have to admit that I would have thought that too before finding out firsthand the depth of intensity in chronic fatigue.

And that has me wondering about the best ways to educate the temporarily healthy and able-bodied about what life with a debilitating chronic illness is like. (I keep repeating the word debilitating because until my mystery illness hit in 2007, I technically had several chronic illnesses, but none of them turned my life quite so topsy turvy as this one. Allergies (both food and environmental), mild asthma, mild hypothyroidism affected me, but no where near as drastically.)


Meanwhile, the kid/guest bathroom is done and work on the master bathroom starts Monday, bright and early. Guess who plans on sleeping all weekend?

C'est moi!

Thursday, July 16, 2009

From the Mouths of Babes

"When are you going to die, Mommy?" my 4-year-old keeps asking me.

The first few (dozen? hundred?) times, I thought it was just a random question. "Not until you're an old lady and your kids are all grown up," I'd tell her.

Then I discovered that I was out of the loop with what was happening at preschool.

First, her teacher's mom died. "She was sick for a long, long time," Ms. Wendy told the kids. "And she was very old."

Well, to a 4-year-old who, if you ask her how old I am, will often guess, "14," I'm pretty old at 42. And I've been sick as long as she can remember. Since before she can remember.

And then the mom of a student from another class died. We didn't know the child or the parents, but Ellie does. It's a small preschool.

"Moms die," Ellie says. "They're sick for a long, long time, and then they die."


So what do you do when you have a mystery illness and a young child?

I keep telling Ellie that I'm not going to die until she's at least as old as I am now, but while I hope it's true and I have no reason to think I'm going to die before I hit old age (is 84 still considered old age?), there's no guarantee.

Heck, I could get hit by a Mack truck tomorrow, and my death might have nothing to do with my mystery illness. Or my husband could, and I could outlive my very healthy (as far as we know) husband by 30 or more years. (Ok, I'm Jewish, and I just have to say this: G-d forbid. Any of it. G-d forbid.)

We've talked a little bit about cycles of life, that every living creature (including moms, bugs and puppies) are born, they live and eventually they die. Some live longer than others. People usually live longer than puppies, and puppies usually live longer than bugs. (Actually, I guess I don't know that last part is true ... are there really ancient bugs alive out there? How long do cockroaches live?)

"So if you're not going to die soon, does that mean you're going to get better?" Ellie asks.

I know I'm biased about my kid being brilliant, but doesn't she have a knack for getting to the key questions? (If journalism weren't a dying industry, I'd say she was destined to follow in my footsteps and be a reporter when she grows up.)

"I'm trying to get better," I tell her. "I'm doing my best."

"But when?" she asks.

"I don't know," I say.

Which, come to think of it, is the same answers I give the adults in my life who ask when I'm going to get better, when my doctors will figure out what's wrong with me and come up with a way to treat it.

I know all kids must ask about death. It's a natural part of life; pets die, elderly relatives die, even the flowers in our garden die. So I'm probably just taking it way too much to heart when Ellie asks when I'm going to die. I'd probably just laugh it off, shrug it off, if I didn't have this chronic illness that leaves me on the sidelines of her life.

So how do you answer questions like, "So when are you going to die, Mom?"

For now, I'm keeping to my standby: "
Not until you're an old lady and your kids are all grown up."

Wednesday, July 15, 2009

Patients For a Moment #3 Is Ready for Readers!

I'm so grateful to Duncan Cross for starting the Patients for a Moment blog carnival for, by and about patients. The third edition is posted here, and I highly recommend you take a bit of your web-surfing time and read some of these well-written, insightful posts.

And if you're a patient blogger, I urge you to consider offering a post up for the next carnival, which will be published July 29. (Deadline for submission is July 26.)

The current batch are all worth a read. IMHO, mine is the weakest of the batch, and I'm not being modest when I say that.

There's also a blog post I came across in my surfing this morning that I think everyone should read: How I lost my health insurance at the hairstylist. It's just crazy that anyone (much less so many) should be in that kind of position in an industrialized nation. Read the comments too.

Sunday, July 12, 2009

Back On The Rollercoaster

I can't believe I'm saying this, but I have voluntarily climbed back on the Prednisone rollercoaster.


It's actually not (yet) affecting my mood, at least not that I can tell. But it's Day Two at 40 mg/day and I went from barely being able to hold a pen on Friday to being able to make a fist without pain today.

I was really hoping it would give me an energy boost too, but it actually seems to be having the opposite effect.

Or maybe I've got a bug on top of my usual stuff; it's hard to tell. (My internist ran a urinalysis on me Friday and I got voicemail that there was bacteria in my urine. Typically, that's been enough to get a prescription for antibiotics, but this time they're running a culture so I won't get the results until sometime later this week.)

Meanwhile, I had what I think was at least a runner-up for the Worst Headache Ever last night. And it was a weird one -- it felt like someone was ramming a pole through the back of my head and out my forehead. My forehead hurt, sure, but the really intense pain centered upper right quadrant of the back of my head. I have never had a headache like that before, and I'm hoping it wasn't a bizarre side effect of the Prednisone and I never have one again. I take Midrin for headaches, and the way it's prescribed, I take two capsules at the start of the headache and then one hourly until it feels better (or I fall asleep). I took my fourth and last dose at 3:45 a.m.

On a positive note, I'm hoping tonight's fortune cookie really means something: "A pleasant surprise is in store for your soon."

A cure, or at least a real diagnosis and treatment plan would be very pleasant!

Thursday, July 9, 2009

Is It Possible To Get a Pre-Illness Life Back?

There's a great post over at Duncan Cross about how even though he's in remission, he's still miles away from re-capturing his pre-flare life.

He concludes:
"...[E]ven though I am technically in “remission”, it’s continually amazing to me how much my illness continues to affect my life. Everyone says I look so much better, but I still don’t feel whole. There is still something missing. And finding that something - putting my life back together - sometimes feels like it might take forever.

And that got me thinking -- even if I wake up tomorrow feeling perfectly healthy, with tons of energy, no pain, etc., there's still no way to go back to 2006.

I don't really count it as part of my illness, but I was in a car accident in August 2006 that left me with chronic back and neck pain. I've got a neurosurgeon who'd love to operate and "fix" me right up, but first I postponed it because I couldn't figure out who would take care of my then 20-month-old daughter and I was sure there was no money for daycare. Less than a year later, the mystery illness hit, and while I continued taking care of Ellie for awhile, it became obvious I couldn't when I went into the hospital two years ago today. And you know what? When there's absolutely no choice whatsoever, you find money for daycare, even if it means skimping a bit on things like retirement savings. Sigh.

Before that car accident, I was reasonably healthy. I had joined a gym a few months prior to it and had started a regular workout routine that I was so proud of because it was the first time in my life I found exercise enjoyable. I had joined MOMS Club and Ellie and I had lots of activities through that group or through another playgroup we were in. Ellie was starting to communicate fairly well and was really getting to be a lot of fun. And we were even trying to expand our family. (I miscarried two days after the accident.)

And then the car accident left me struggling to do basic things like lift Ellie to put her in her car seat or to change her diaper. I couldn't sit on the floor with her to play because I needed back support or my pain would spike. Walking became painful and chasing after a not-quite-2-year-old was excruciating so I cut way back on park dates. The next 10 months were not fun in so many ways, and I thought they were really hard and painful both emotionally and physically. And then I got sick and things went spiraling downhill from there.

We've adapted as a family to my being sick. I'm blessed with an amazingly supportive husband, who hopes and prays as hard as I do that the status quo isn't permanent.

But when I think about all I've missed in the past two plus years, it overwhelms me. Even if my mystery illness disappears as quickly as it started, I'll never get those two years back as Ellie grew from a toddler to a preschooler. I didn't expect to be on the sidelines of Ellie's life until she at least was in elementary school. Definitely not starting when she was 2-and-a-half.

Don't get me wrong -- I'd still take perfect (or even just decent) health. But thinking about what it would be like when/if I do put this illness behind me made me realize that I can't go back. Things have moved on while I was distracted with all these doctor appointments and medical tests. Ellie's grown and matured and, as her teacher says, bloomed while I've been down for the count.

So all I can do is look forward to putting this illness behind me someday. And I hope that someday is soon.

Tuesday, July 7, 2009

PVC: No, It's Not a Fetish

I got a call a few minutes ago from my cardiologist's office. I think it was his medical assistant, but it may have been a resident.

She just wanted to let me know that the event monitor so far has simply caught Premature Ventricular Contractions (PVCs). Everyone has them occasionally; most people don't notice them, she says. The most common cause of them, she said, is caffeine. (I gave up caffeine in 2000, when I discovered it aggravated my chronic stomach ulcers, other than occasional chocolate, so it's not that in my case.)

The good news is I'm not getting two or three PVCs in a row. That would be a sign of something dangerous and potentially fatal. But I am getting a lot of them. My resting heart rate is about 110 plus or minus 15 bpm. (Rarely minus that much!!) I'm getting several every minute, some minutes more than others.

I didn't record each and every one for the event monitor -- I'd be driving those techs crazy if I called every 5 minutes to say I had stuff to play back for them! I've pretty much only recorded them when they seemed stronger than normal or when accompanied by dizziness/vertigo/shakiness.

Interesting. I'm happy to have gotten that recorded. When I wore a Holter monitor while pregnant with Ellie because of all the palpitations I was having, it was the most flutter-free 24-hour period I had during that entire pregnancy. They caught a total of one PVC during that 24-hour period, which was definitely not representative of a typical day!

Then the PVCs faded away after I gave birth, to the normal just occasional flutter but not even one a day.

Lately, they've been back in force though and while it may not mean anything significant, it does suggest yet more blood tests they will probably need to run.

Meanwhile, I've been told to only hit the button if I have a really bad/intense experience since they're really looking for what happens when I pass out or feel like I'm going to. Unfortunately, I don't seem able to make that happen on demand, so I guess I'll just hope it happens in the next ten days or so.

That's such a weird thing -- to be hoping for something bad to happen just so my doctors can see it happen. Sigh.

Monday, July 6, 2009

The Event Monitor

I picked up my HearTrak event monitor on Thursday, and immediately headed to Target for a long-postponed trip to pick up necessities.

I figured I was killing two birds with one stone -- picking up Very Important Purchases like bubble bath for my preschooler and hopefully triggering my tendency to faint or feel like I'm about to pass out while wandering the aisles at Target.

Wouldn't you know? No major dizziness, although I did record while having some dizziness. Sigh.

Since then, while I've had some major vertigo, I haven't come anywhere close to passing out, which is what they really want me to capture with the monitor. I have, however, captured over a dozen weird palpitations that the folks I transmit to say they can definitely see. (Proof it's not entirely in my head! Woohoo! :-)

Meanwhile, I wear this thing for two weeks. And if it still doesn't capture what the cardiologist is hoping to capture, possibly for two more weeks after that.

I guess the only other news I have to share is my AM Cortisol levels are totally normal so my internist says there's no reason to suspect adrenal insufficiency. I was pretty sure that wouldn't be an issue since everything I read about them didn't fit my symptoms and experiences.

Now here's hoping for some events to really monitor ...

Wednesday, July 1, 2009

Check out Patients For a Moment

I'm delighted to say that my post What's In A Name? was included in second round of the new blog carnival for, by & about patients, Patients For a Moment, started by Duncan Cross.

For those who aren't familiar with blog carnivals, they are (usually weekly) collections of posts by various bloggers on a specific topic. There's a number of medical blog carnivals out there (my favorite is Grand Rounds). You submit yourself and the host of that carnival decides whether to include you. Some hosts include all submissions, others sometimes pick and choose what they consider are the best ones for their theme or topic.

I've been a little shy about submitting my posts to carnivals in the past, partly because my blogging is usually more about what's going on in my life than taking more of a step back to look at issues.

Anyway, there's lots of great reading in this blog carnival, so if you haven't already seen it, please take a look!