Chaneling Mr. Bill

Anyone remember Mr. Bill from those Saturday Night Live skits? The colorful gingerbread-cookie-looking character made of play dough who always had horrific things happen and always featured him screaming, “Oh Nooooooooooooooooooooooo!”?

Well, that’s how I’m feeling right now after visiting my primary care doc this week.

Because she’s leaving her job.

Oh, nooooooooooooooooooooooooo! (I’m pretty sure people in China are wondering what that moaning they heard was.)

She was generous enough to give me a heads up that she had turned in her notice that day. But while her partnership agreement requires six months’ notice, she’s hoping to persuade the clinic to accept three months instead.

It’s a good move for her – she’s going to work for Kaiser and will earn way more money as well as receiving things like pension benefits. She’ll be a bit closer to home, too.

But what about me?!

We don’t have an option for Kaiser through my husband’s insurance. His company used to offer it, but not anymore. And even if they did, I’m not entirely sure I’d want to sign up for it anyway since it’s a much more managed care plan than I prefer and I've heard mixed things about them.

I’m kind of panicking because although I only asked for a single prescription of pain meds over the past year, I’ve known that she trusts me not to be selling them on the street or overmedicating. A new doc isn’t going to trust me like that. I liked knowing that my primary care doc knew me before I got sick, and therefore didn’t accuse me of malingering or exaggerating my symptoms.

I don’t even like going to urgent care when I have a sinus infection because it’s too complicated to explain my health history to a new doctor.

Sigh.

I did ask if she would help me transition to someone new, either at her clinic or elsewhere, and she agreed.

On the upside, I guess I could look for a doctor with offices with free parking … I hate paying to park. :)

But oh, this was an added bit of stress I really don't need right now. :-(

No Mo' NaBloPoMo (For Me)

You may have noticed that I’m not participating in NaBloPoMo (National Blog Posting Month) this month, which I think is the first time since I started this blog in 2007. I had good intentions, but didn’t really realize that it was November and time to do NaBloPoMo until, well, a week into the month. Oops!

Things have been a bit stressful here in SickMomma Land. And it certainly isn’t helping that I’m not entirely over my pneumonia. (I’m doing far better than I was doing at its peak, though!)

Otherwise, we’re doing just fine. And one good thing about the stressful stuff (which I can’t talk about) is that Scott and I make a good team and definitely have each other’s back. So rather than pulling us apart, it brings us even closer together.

Meanwhile, I’m going to have to start a new round of doctor appointments. I’m due for my periodic visits to my cardiologist and neuro-muscular neurologist, plus I need to go see my immunologist about my still junky lungs and the fact that I got pneumonia yet again. And I think I was supposed to see my hematologist this autumn, although his office hasn’t called me, so I probably need to just schedule an appointment to be sure my MGUS (monoclonal gammopathy of undetermined significance) levels haven’t increased yet to the point of needing to do something about them.

So, that’s pretty much what’s going on with me. Except for this little commercial break:

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Breaking Up Is Hard To Do

Oh Prednisone, how do I love-hate thee?

Let me count the ways!

1. You make me stop hurting! Suddenly, my hands and wrists can again do all the kinds of things they were meant to do without making me long for pain meds.

2. You make me fat(ter) ... with a bottomless pit of hunger that is never fully satiated but is far too intense to ignore.

3. You make it possible for me to breathe freely and deeply again with the accompanying musical wheeze. (Ok, I know you've done that in the past; I'm still waiting for you to do it this time around.)

4. You make my heart beat ... rapidly. Very, very, very rapidly. Even more rapidly than my normal tachycardia that keeps my heart pounding when it should be gently going pitter-pat.

5. You fill me with emotion ... that comes on suddenly and is often out of proportion, especially the intense anger, almost rage, for otherwise typically minor irritants.

6. You fill me with energy ... the kind that leaves me with jittery shakes and unable to sleep well at night. But not the kind that helps me have any sort of productive day.

7. You keep me counting ... on how many more days I need to swallow how many of your pills on the crazy taper schedule: Take three pills for four days, then two pills for four days, then one pill for three days, then half a pill for four more days. Um, yeah. I can't even remember what I had for breakfast much less which dose I'm on in the taper, especially when each doctor I see adjusts both the dosage and the taper schedule.

So you see, dearest Prednisone, I think it's time for us to stop seeing each other. It's not you, it's me. I can't seem to find that loving feeling for you anymore. So if you'd just wipe out this pneumonia before you leave, I'd be grateful ...

So Many Blog Posts Not Getting Posted

I've been meaning to post. I've even started writing at least a dozen posts that are stuck in my drafts folder here.

I didn't even get a post out to mark the fifth anniversary (Oct. 14) of my blog. 

We've had a bug in the house that seems to be settling in for the long term. Started sometime in August after some friends visited, and every time we think we're done with it, it pops its head back up like a Whack-a-Mole game.

For me, it's turned into bilateral pneumonia, which kind of puts a damper on everything since I'm silly about things like being able to breathe. So far, luckily, it's only been bad colds for Scott & Ellie, and I'm hopeful neither of them will develop anything worse.

On the upside, I'm on a high enough dose of Prednisone that my hands don't hurt right now, which is huge. :) But not likely to last beyond the end of the course of meds.

Anyway, I'm still here, and I hope y'all are too even though I've been MIA for a couple months. :-/

No Vacations From Chronic Illness

Duncan, the founder/creator of the Patients For A Moment blog carnival, is hosting this month's edition, which focuses on how people with chronic illness or chronic pain travel. It's a really good edition, and you can read it here.

I used to love to travel, whether it was a 150-mile-each-way trip to meet a friend for lunch or flying cross country for a three-day weekend at a science fiction convention or a fabulous vacation in Hawaii.

So it makes me a bit sad to find excuses for why I don't visit non-local friends anymore. The fact is, I just don't travel well these days. I don't even do well traveling locally. By the time we get where we're going, I'm exhausted and ready to be done.

It's hard, but that's life, right?

When we do travel, I find it helps to manage expectations: My own, my family's (i.e. Scott & Ellie) and the expectations of anyone we might be visiting. The first two are far easier than the third.

Our trip to Disneyland in 2010 worked surprisingly well, as long as I didn't dwell on what I was missing out on because I needed to spend most of my time in our hotel room sleeping or resting. It was a huge help that there was somewhere for Scott & Ellie to go as soon as they woke up so I didn't have to try to rest with them in the hotel room making noise. And unlike trips to visit my family in Chicago or Scott's family in central Washington, we didn't have to take anyone else's schedule or preferences into consideration.

We have hopes of doing more travel -- a family trip to Nationals next July in Albuquerque, where Scott's younger sister lives, maybe even a trip to Disneyland too. And there's the ever-present, self-inflicted pressure on the importance of making it possible for Ellie to spend time with extended family, none of whom live locally.

Pretty much the only constant is the need to have flexibility and remember to slow down my schedule despite any pressure (internal or external) to do otherwise. Because, of course, my chronic illnesses follow me wherever I go. 

I Hate Nietzsche

I do, I really hate Nietzche.

Or maybe I just hate it when people quote him, particularly the "That which does not kill you makes you stronger" quote (which apparently is not really a true quote but a summarization, according to Wikipedia).

If it's true and not simply a cliche, I'm apparently stronger now. After all, I survived "Girls Week."

"Girls Week" is what Ellie labeled the week that Scott was at the USA Roller Sports 2012 National Figure Championship since we were staying home while he was in Lincoln, Nebraska. (He made his coaches -- and us -- proud!)

Ellie went to all-day camp each day, which is probably how I survived. :)

But oh, my days shrunk.

They shrunk to the point where I was getting up at 7 a.m. to get Ellie ready for camp, including making her lunches and breakfasts, and dropping her off around 8:30 a.m. Then I'd come home and crawl into bed and sleep until 3ish. Pickup was around 5 p.m. (That was pretty much the routine all week except for Monday, when the cleaners came and the timing was such that there wasn't time for me to sleep either before or after they came without risk of sleeping through an alarm clock.)

Evenings were exhausting, even though Ellie was at her easiest and most helpful. We watched a lot more TV than normal (including The Princess Bride and Mary Poppins, two fabulous classics I'm thrilled to have introduced Ellie to!).

Of course, exhaustion snowballs, so as Friday approached, I was feeling like I was hanging on by my fingernails. And I was terrified that Scott's flight would be canceled due to weather. (Several of our friends who were trying to leave Lincoln earlier in the week had their flights canceled for a couple days due to weather first in Denver and then in Lincoln.) But it all went as planned and he got home in the wee hours Saturday.

I made it through, and Ellie is happy about how it all went, so in the end, I guess that's all that matters, right?

Am I stronger for having survived the week? No. I don't think so. But perhaps the thought of Scott going on a business trip (or to Nationals again) won't terrify me quite so much as this one did. And that's definitely something.

The Stigma of Chronic Illness

There's something about having a debilitating chronic illness that, for many of us, is something we try to hide from all but our closest friends and family.

And sometimes even from them.

Even if we don't try to keep the illness hidden, we minimize it, we make excuses for why we can't do something that our health doesn't allow us to do.

Why is that?

I've known two people with Type I Diabetes who kept it hidden until they had a health crisis they couldn't hide. The first, a college friend who, when asked why she hadn't told anyone in our circle of friends which included several nursing and pharmacy majors, said she was afraid we wouldn't like her if we knew she had diabetes. The other, a man I worked with, made me swear I wouldn't tell any of our co-workers.

It took me 20 years from that first episode in college to understand why someone might want to hide their health issues, whether from friends or employers or acquaintances.  It takes courage to be like Jenni Prokopy of ChronicBabe.com fame or Laurie Edwards of A Chronic Dose, both of whom live their chronic lives out loud on the internet.

While I am fairly honest about what's going on in my life here on my blog, I do it with the knowledge that most of the people I come across in my daily life aren't going to bother to google me and find Sick Momma. Kind of like hiding in plain sight, I guess. :)

My friends know I have health issues. I allude to them on Facebook, and sometimes even whine there when I'm in a particularly bad place. But I rarely share the gritty details of the limitations I live with unless I'm forced to, like when we attended a children's theater with friends last month on a day I should have stayed in bed. After the play, they wanted to walk several long, and hilly, city blocks to get some frozen yogurt, and there I was in the awkward (and slightly panicky) position of trying to quietly let my husband know I couldn't do it. Another mom overheard part of the conversation and suddenly everyone wanted to know what was wrong, and I was in the position of trying to explain that my arrhythmia was causing major shortness of breath combined with intense fatigue and, well, I simply couldn't walk to the yogurt place. It sounds silly reading it here, but at the time it felt an awful lot like standing naked in a crowded room of well dressed people.

There's something intimate about sharing with others the various ways our bodies have broken down and no longer work properly. It means letting people see the man (or woman) behind the curtain, with all their human frailties showing. It means letting them see behind the social facade we all keep.

I can't help but think that there's a stigma attached to having chronic illness(es), that having health problems is a sign of weakness in our moral fiber, somehow. We celebrate cancer survivors, so why don't we celebrate people living with lupus or multiple sclerosis or any of a thousand other chronic illnesses? Why do people who are sick feel like it's something to be ashamed of, a personal failure?

This post was inspired by a NYT article on how people often keep their Parkinson's diagnosis a secret, sometimes even from spouses or children, and how that may be hampering the search for better treatments.

Sick Momma's Theory of Relativity

I promise this won't be a post full of math equations. (Although I've been watching the series Numb3rs on DVD and wishing some of my high school math teachers had let me know all the ultra cool ways you can use math!)

I recently visited a new rheumatologist, and while I did get some good information from her, I was struck more by the paperwork that I had to fill out prior to my appointment.

In particular, in a section titled Activities of Daily Living, there was one of those line drawings, with a scale of one (very poorly) to five (very well), asking me to circle a number that best described my situation: Most of the time, I function ...

My initial impulse was to circle #3: Okay.

Because really, five years into this chronic illness situation, my life has adjusted (i.e. shrunk) to the point that I do feel like I'm managing okay. I get by. I am able to do most of the things I need to do, even if I can't approach doing as much as I want to do.

After that question, there was a long list of activities, like bathing, obtaining restful sleep, working, engaging in leisure activities, that I had to check a box on whether my health problems made them difficult usually, sometimes or not at all.

After I went through that list, I had to re-think my response to the scale on how I function because it became clear to me that I had lost my sense of what normal really is for most people.  

Everything is relative.

Compared to how bad things get when I'm very flared, I am functioning okay. Compared to how little I could do after my hospitalization back in July 2007, I'm functioning very well.

But when I stretch my memory back to what life was like before I got sick, when I compare my levels of functionality to what I see my friends and acquaintances managing to do, I'm somewhere between very poorly and poorly. Compared to how some of my friends in the chronic illness community, I'm functioning well.

So there you go -- Sick Momma's Theory of Relativity: At the same time, I'm doing both better than I used to do and worse than I used to do, all at the same time.

 

Sunny Days Are Here Again

So, exactly two weeks after I stopped taking digoxin, I had a really good day on Tuesday. Quite bizarrely, since on Monday, I still felt like crap.

It's something I've noticed occasionally over the past few years, typically when I've had a virus on top of my "usual." When I finally get over the hump of being sick on top of being sick, I get a miraculous day where I feel good. Better than good. Approaching great.

And then I slide back downhill to my "usual."

The good news is I am back to sleeping closer to 12 hours a day than the 16 to 20 I was needing with the digoxin. I've lost the nausea, and my pain levels are back to approaching tolerable. (Boy, if you'd told me five years ago, I'd think these pain levels were tolerable, I'd have laughed and told you that you were crazy. But c'est la vie.)

I can focus again to read -- which is good, because my library hold on an e-copy of A Storm of Swords (A Song of Ice and Fire), book three in the series better known as the Game of Thrones just came up for me this week. :)

Meanwhile, my poor little Etsy store has been sitting virtually untouched for a month or so. Time to try to get busy, I guess. Just in time for the end-of-school craziness. (Ellie has a gymnastics mini Olympics next weekend, the following weekend is roller skating's Regional competition for both Scott & Ellie, three of Ellie's friends are having birthday parties in the next two weeks, end-of-year teacher gifts need time and attention, we have a grad party to go to ... and that doesn't even include school functions! Way too much on our plates.)

Nothing But Heartaches*

(*Title of a song by The Supremes)

© Oculo | Stock Free Images & Dreamstime Stock Photos

So, last week I finally called my PCP and begged the triage nurse to fit me in sooner than the May 22 appointment I had made a month earlier because I feel like something you'd scrape off the bottom of your shoe while cursing neighbors who don't pick up after their dogs. And I'm sleeping round the clock lately and feeling zombie tired when I'm not already asleep.

So they squeezed me in today, and we talked about whether the heart medicine (digoxin) I started not long ago was behind my symptoms or whether I am simply having my annual flare, with a slightly later start than "normal."

She sent me for a routine EKG because I was complaining of chest pain (which I can't identify as truly being heart pain or simply being my chronic costochondritis flared up again), and told the tech she wanted to see me and the EKG report before I left. I assumed it would be just like all the other ones I've had done, which show sinus tachycardia and, sometimes, premature atrial contractions (PACs).

This time, she said it showed an "ST abnormality," which was mildly concerning because I was complaining of chest pain. It's quite likely a side effect of the digoxin, which we agreed that I would quit taking. But they can't know that for sure without more testing.

I was given two options, either a "chemical stress test" where they give you a drug that stimulates your heart to crazy fast tempos so they can confirm that all areas of your heart are getting oxygen when they need it, or I could wait a week and come back for another EKG when I've been off the digoxin for a full week.

I opted for the latter, with promises to my PCP that I'd go to the emergency room and get checked out if I felt worse or anything weird happened.

So it turns out to be a good thing that I hadn't cancelled my original appointment slot. :)

Meanwhile, I'll be crossing my fingers that I'll be feeling much better when the digoxin gets out of my system and that next week's EKG is back to my "normal" abnormal readings. :) Either way, I'll let y'all know.

Too Much Day: A Conversation With My Husband

This is the story of my life: On Saturday, we went to an American Girl fashion show. Earlier in the day, I took a shower and washed my hair, then helped Ellie find an outfit and did her hair.

Ellie wasn't in the fashion show, but she says she wants to try out for it next year!

Yep, that was the entirety of my day. And it was beyond exhausting.

At bedtime, when Scott and I were doing our evening ablutions, we had the following conversation:

Too much day, I said as I sat on the side of the bathtub to take my meds.

How come it's always too much day and never too little day, he asked with a smile.

Well, I replied, sometimes I do say too little day, but those are the days I sleep so much that I only have the teensiest part of a day that I'm awake for. Not really what you meant, though.

No, he said, not really. Have you seen your eyes?

I leaned forward and peered in the mirror. Wow, I said, do they really look as bad as they do to me?

You look like you have two shiners, he said.

Some days, I guess I wear my fatigue on my face. Or at least under my eyes.

The Power of Venting

I'm a big believer in the power of venting. Or whining, if you'd prefer to label it such. :)

Once upon a time, a million years ago -- I think it was 1997? -- I was sent to a pain clinic because my shoulder surgery wasn't the success that my surgeon thought it should have been. It was an outpatient thing, but a four-week, eight-hours-per-day, program. I didn't know when I went to check it out that all the clinic's patients were paid for by workers' comp programs, and the focus wasn't so much on helping patients feel better or learn better ways to cope but simply on getting them back to work.

Two memories of that horrible place (which went out of business a few years later!):

---One of the physical therapists told me, in all seriousness, that one of the goals of the program was to raise our pain levels so that, when we left and went back to work, we'd feel so much better in comparison.

---During the "exit interview," our spouses or partners were asked to come and Scott attended for me. The psychologist went on and on about how Scott should react if/when I verbally or physically showed pain. Which was essentially to ignore me and not coddle me under any circumstances. The idea, I guess, was to train me to suppress any expression of pain in words or action. At that point, I was steaming angry, and burst out with something along the lines of, "Just so you know, if Scott does any of what you're saying, it will be the death knell of our relationship! If I can't tell my partner that I'm hurting, there is no relationship."

For me, keeping the fact that I'm in pain (or feeling unwell or worried about something) bottled up inside makes it worse. Just expressing what I'm feeling is freeing, somehow. What's the proverb? A trouble shared is a trouble divided? Something like that.

Anyway, this is a long way of saying that I'm feeling better for having blogged yesterday about how lousy I'm feeling lately. Thanks for listening! :)

Here We Go Again ... (Warning: Whining Ahead :)

I hadn't wanted to say anything about in case I jinxed myself, but I was internally celebrating that I seemed to have missed my annual flare, which typically hits me in February or March.

I guess this year, my flare was just running late. Kind of like spring here in Portland this year. Because I'm definitely flared to the point that I'm canceling my volunteer shift at the school library (I made it once in the past four weeks) and even, occasionally my acupuncture sessions. Sigh.

Scott and Ellie competed last weekend in Auburn, Washington, and I stayed home hoping that I'd be feeling better by the time they got back. I think I was actually doing worse by the time they got home than when they left. :-(

Here's the thing, though -- I've wondered if it's actually a flare or if it's side effects from the digoxin prescription I started a month ago in hopes that it would make my heart rhythm more regular and possibly even slow down my heart rate. My PCP had suggested that slowing my heart rate might even help lessen my intense chronic fatigue.

Well, so far, I've had a slight lessening in the frequency and duration of my arrhythmia, but my tachycardia hasn't slowed down a bit. My fatigue levels are soaring, my pain levels are up, essentially all the various symptoms I typically have are worse than my most recent level of normal.

I read the side effects for digoxin, and wonder how I'd tell the difference between my typical flares and the drug's side effects: fatigue, malaise, weakness, dizziness, apathy, tachycardia. On the upside, I seem to have the one side effect I always hope for: I've lost my appetite. I'm hoping that translates into some weight loss, but I'm not holding my breath.

The weirdest part? My stuff is sometimes manageable when I'm immobile. Sitting on the couch, I start to think I'm doing OK (other than the sensation the room is spinning around me). But once I get up and move, I feel like I can't get enough oxygen and I'm short of breath, even though my lungs are clear. I feel like I'm breathing through a straw. And my chest hurts, which has to be costochondritis reminding me it hasn't gone away. Oh, and gravity -- what's up with the gravity lately? I feel like I'm on Jupiter or something.

Ah well, life goes on.

To end on a happier note, here's a photo of Ellie from the skate competition:

That's Ellie front and center. The three girls are waiting for their cues to start.

Thanks for listening/reading.

More Than My Chronic Illness

This post is being submitted to the April edition of the patient-centric Patients For A Moment blog carnival, which will be posted on April 15 at Somebody Heal Me. Diana is accepting contributions through April 14; you can see her topic and details here if you're interested in contributing.

Everybody's story is different. My story started seemingly out of no where, literally overnight I went from being "normal" and reasonably healthy to being, well, sick. And I and my family entered a crisis mode that took at least a couple years to get out of.

During that crisis period, I struggled with the fact that I had become my illness -- there wasn't really anything else to define me. Once upon a time, I'd been a journalist. Then I was a stay-at-home-mom of a toddler. And next I became a patient (I couldn't really call myself a stay-at-home mom when my kid was in full-time daycare. Nor was I a "homemaker" when I could barely take care of myself.) and watched my world shrink.

Eventually, I was able to stop living in crisis mode when it became obvious that whatever the heck it was that I had wasn't going to kill me anytime soon and it fell into the category of chronic illness.

At some point, instead of feeling angst over the things I'd had to let go of because I couldn't manage them anymore after I got sick, I started to enjoy simple pleasures in the things I can do. I think of it as having adjusted to that shrunken world. Maybe it's simply learning to slow down and stop to smell the roses. To be honest, I try not to dwell on it because dwelling on things I can no longer do is depressing and unhelpful.

So who am I when I'm not a patient?

--- I'm a mom and wife. My illness limits what I can do with my 7-year-old daughter, but I try to make sure I'm always there for the big things as well as helping give her memorable experiences. This week, that included her first visit to Cirque du Soleil's Ovo show, which was awesome! :) Exhausting, but awesome!

---I'm a crafter and crafty businessperson. (See my crafty blog and/or visit my family's Etsy store!) 

---I'm an avid reader. (I'm currently absorbed in Clash of Kings by George R.R. Martin. Friend me on GoodReads if you love to read too!)

 ---And, of course, I'm a blogger. Albeit not as prolific as I wish I were! :)

What do you do when you're not being a patient?

Eep! It's April?!

Yesterday, I had two "Oh, cr@p -- it's April!" moments.

The first occurred when, after waiting for my acupuncture session for about 15 minutes, her partner asked if I was sure I had an appointment. Of course, I was. I have an appointment every Tuesday at 2 p.m. But the partner looked in the appointment book and discovered that I wasn't down for an appointment.

Turns out, we had forgotten to get me on her schedule for April. But because I have my appointments on my calendar as repeating weekly, I showed up for my regular appointment. Oops!

My second moment occurred last night just before I headed up to bed when I checked my friend Sherril's blog, The ICI Experience. Sherril has taken up the WEGO Health challenge to blog daily for the month of April. I signed up for that challenge too, but had completely spaced on the fact that April had actually started. Oops.

So, um, happy April everyone!

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Check out our family's Etsy store: http://fostersbeauties.etsy.com! We add new items frequently, so check back often!

Where's My Lipo?

I had a fat pad biopsy this week, something my current favorite doc ordered because my arrhythmia combined with my longstanding symptoms could possibly be caused by amyloidosis. Mind you, I stand a better chance of winning the lottery than having amyloidosis and there's no real reason to think I have it.

But it's something that he and other doctors have mentioned in passing, and this doc felt that the addition of weird heart beats to the mix of my health issues warranted ruling it out. And because he isn't the kind of doc who orders tests simply for the sake of something to do the way too many of them seem to.

Interestingly, my fat pad biopsy didn't go the way all the descriptions I read online. Instead of the needle aspiration, the surgeon made a 3/4-inch incision on my belly and took out a plug that way. He put in four layers of stitches! It was all done in the office and no big deal. (I'd have been even happier if he'd taken more of my fat pad. It's not like I don't have plenty to spare!)

Meanwhile, it looks like I'm going to finally get my tachycardia treated. The event monitor I wore last month showed that I'm having premature atrial contractions (PACs), which is nothing serious, but since the palpitations are frequent and painful, they can treat it with a medication that will also slow my heartbeat. I'll take digoxin, which is an old drug based on digitalis. Beta blockers are contraindicated for me because of my asthma and the fact that I have low blood pressure. But digoxin works differently and won't affect my blood pressure.

The best part? There's a chance it will help with my intense fatigue by lowering my heart rate from its current 100-120 at rest. The downside? Digitalis is toxic if it builds up in the body, so they'll have to do regular blood tests to make sure I don't end up with too high of levels. But I don't have a fear of needles, so I'm not too worried about that. 

On a completely unrelated topic, we officially launched our online store. Please check it out and share the link with anyone you know who might be interested! And check back because I'm slowly adding more items.

   

What Would You Like To Tell Congress?

Brittney over at The Road I'm On has an intriguing topic for the March edition of Patients For A Moment: Given the opportunity, what would you tell Congress (your state's delegation, the entire body, and for you Canadians and other nationalities whatever your main government body is called) about your chronic illness, the way it affects your life and why it's important to fund research into finding new treatments and ideally a cure?

I have some ideas percolating on that topic, but in the meantime, if you want to participate, you should start writing asap. Brittney has extended the deadline until 8 a.m. March 14. You can see her post requesting submissions here.

Meanwhile, I am happy to announce that I got my overdue meds from the mail-order pharmacy, and it definitely makes a difference! I'm still flared, but I'm no longer as out-of-control pain-wise as I was without the Flexeril. And my unrelated back pain that pre-dates my chronic illness is back under control, which is a huge relief.

Still Waiting ...

Yep, I'm still waiting for that darn mail-order prescription.

On the upside, the website shows that it's in transit and scheduled to arrive March 6, so just a few more days.

But oh, I dug through the less-than-intuitive mail-order pharmacy's website and discovered that I requested the medication on Feb. 13.

And since I still had refill available, according to that website, it kind of boggles my mind that it is taking so darn long to get here!

Meanwhile, my pain levels just keep ramping up. So far, I've refrained from using narcotic pain pills, but since I'm forbidden from ibuprofin (I get peptic ulcers from all NSAIDs. And I mean all.) there really isn't much else I can turn to for pain control. I'm hoping that having the end in sight (Tuesday!) means I can hold on.

OTOH, I'm not really sure why I try so hard not to take pain pills. My doctors prescribe them and say they're meant to be available when my pain levels get high. In nearly five years of this illness (or ever), I've never abused them. But there's a stigma attached to using narcotic pain meds, especially for a chronic condition, and like a lot of people with chronic pain, I've internalized that attitude. And that's despite the fact that I know from experience (and it's supported by numerous studies!) that letting pain build and grow just makes it much harder to get control of later on.

So, um, I guess that's my update on the status quo. 

Meanwhile, although I doubt I'll manage to post daily for April, I went ahead and signed up for Wego Health's Health Activist Writer's Month Challenge 2012 (HAWMC). If you blog and are so inspired, you should sign up there too. They will send you daily prompts, although you're free to blog about whatever's on your mind instead of their prompts.

Birth Announcement (of sorts)

We haven't quite managed to get our Etsy store up and running, but we're getting our ducks in a row and hope to have it open in the next couple weeks.

I didn't want to start a new craft blog, but I've been reading a lot about successful crafty businesses and how to create them, and they seem pretty unanimous about the importance of a blog and Twitter presence.

So I'm happy to announce the launch of our new blog, Foster's Beauties. You can also find us on Twitter as @FostersBeauties. 

Meanwhile, if you're into marketing and willing to offer free advice, I'm looking for suggestions on a tagline for the business, something about beautiful crafts in fabric and wood. (But it should be clear that it's either fabric crafts OR wood crafts, and nothing -- at least nothing planned currently -- with both fabric AND wood in it. :-)

Happy Leap Day!

The Problem With Mail-Order Pharmacies & Prescriptions

Like most people these days, I've switched all my maintenance/daily prescriptions to my insurance company's mail-order pharmacy in order to save money.

And for the most part, I do save money, although our copays have increased to the point where on my generic meds (which is almost all of them), I save just $4 out-of-pocket by getting a 90-day supply from them rather than a 30-day supply from my local pharmacy. (I'm fairly confident the insurance company saves way more $$$ than I do by my filling my prescriptions with them.)

I set most of my meds up so they automatically refill the prescriptions and send them to me, and so they renew the prescriptions when they expire. Which is good in theory, but since the mail order pharmacy refills a 90-day prescription after 60 days, I end up with a six-month supply or more within a year.

The problem with that is prescriptions get tweaked. My thyroid medicine is fairly regular, but every once in a while my biannual bloodwork shows that I'm on either two much or two little Levoxyl. If I have two unopened bottles with a 90-day supply sitting in my medicine chest, I'm really not thrilled to change my dosage.

At one point, I had over a year's supply of Flexeril on hand, so I finally stopped the automatic refill option. So what happened? I didn't realize I was emptying my last bottle until, well, I went looking for a new bottle in my bathroom cabinet.

So now I'm waiting for the postman to bring me a package with the medicine that is key to keeping my pain levels under control. And I can't go to the local pharmacy, because when I did that on a different prescription, the mail order pharmacy canceled its processing of a 90-day supply. (It took three attempts to get that prescription filled by mail order without running out of the medication on hand.)

But that's life with chronic illness, right? Lots of balls to keep in the air and lots of patience needed.

(Mostly) Wordless Wednesday

I took an online class this month through Joggles.com, and although I have felt out of my depth in making these funky felt pins, I'm rather pleased with how my projects are turning out. They're still works in progress but I thought I'd share:

Ellie keeps telling me that if I decide any of them have too many mistakes, I can give them to her. :-)

 

I think I'm most excited about the mermaid, even if I did glue her down accidentally before I fixed the size/length of her neck. :)

I wish I'd chosen different beads for the "stars" around the fairy perched on the moon. But I think it's still interesting looking.

 

PFAM: The Travel Edition

As some of you know, I've dipped my toes back into traveling since it's become obvious that chronic illness is, well, chronic. And I like taking vacations, even if I have to take my symptoms and health issues along with me.

I'm still learning how to be successful at travel, but I have learned a few things that make a huge difference for me:

•  Staying at a hotel like Embassy Suites that has a separate area from the bedroom means Ellie and Scott can have a home base to watch tv and/or hang out while I'm still sleeping. It's crucial that there be a door to shut between the two rooms. If we only have a regular hotel room, it means either I'm awake way earlier than my body can cope with or they have to get up and have somewhere to go. And having somewhere to go around 6 or 7 a.m. can be challenging most place. (It wasn't a problem at Disneyland, though. :)
• Plan for naps. Although I don't nap daily at home, I always have quiet time. On vacations, it's a lot harder to find quiet time, especially when you're traveling with a kid. Naptime makes it all possible. 
• Don't over commit. I find this most challenging when we're visiting family and there's people who want to spend time with us. I find that the larger the group, the more tiring it is to spend time with them and increased fatigue makes many of my symptoms worse. It's really hard to say no, but it's crucial.
• Eat regularly and keep healthy snacks available in the hotel room for when going out in search of a meal isn't an option. 
• Schedule downtime for after the trip, even if you don't expect to need it. I always need it, but I don't always realize ahead of time how much I'm going to need it. Even a low-key weekend trip takes more out of me than being at home.

In My RA Beach Vacation, Deb Murphy of ABCs of RA wrote about a successful weekend away at Myrtle Beach, North Carolina, a popular destination in the southeast U.S. It took some planning ahead, but it sounds like a great vacation.

Meanwhile, Deb also pointed out a great travel blog called Travels With Pain, which has many, many articles with some great advice for people with chronic illnesses. Here are two that I'd like to share: Five Ways To Make A Trip Less Painful and Taking a One-Night Trip.

So this was definitely not the most popular edition of Patients for a Moment that I've hosted, but I'd love to hear tips and travel stories from other spoonies in the comments if you have any you want to share!

To PFAM or Not To PFAM, That Is The Question

So I was supposed to post the February edition of PFAM yesterday, but there was one little problem: I only got one submission. 

And I've been sick enough this month that I apparently didn't promote it enough to get more submissions. I'd meant to follow Leslie's lead and send out a mass email to my fellow health bloggers a few days before the due date, but well, I didn't. I haven't spent as much time online as normal, and I think that played a role here. Certainly, I never got my PFAM post written and posted either. (And for the record, I still feel cruddy. This virus has just knocked me on my butt. I haven't been able to do any crafting, either.)

I'm waiting for guidance on what to do next. It just doesn't seem like a blog carnival if there's only one contribution.







 

Just Another Day

It's been a looooong day. 

And for pretty much the entire time I've been awake (which was waaaaay longer than usual due to getting called into an 8 a.m. meeting at school that definitely wasn't scheduled for my convenience), I've felt like I have Mexican jumping beans in my heart. 

The good news? I picked up an event monitor from my doctor late last week, so at least I could inundate them with recordings of my heart acting weird. (Seriously. The monitor holds ten events, and I filled it up and played it for them three times. Not that the "events" were different from each other, but I wanted to make sure the doctors understood that it wasn't just once or twice in a day that I had little spells. It was all frickin' day. And they still got just a teensy percentage of what I experienced. But they can see the log of times and know that I was recording them at regular intervals over the day.)

The bad news? Apparently I was fooling myself when I convinced myself that the palpitations were caused by the Adderall I was taking. But I quit the Adderall back in December, and while for awhile I had fewer occurrences, it clearly didn't make everything all better. 

Everyone has those occasional palpitations where you feel like your heart skipped a beat. I've had those for years, dating back to when I was pregnant with Ellie, which was the first time I got checked by a cardiologist. But I'd have just one or two palpitations at a time, and then go hours if not days and weeks before having another one.

Something changed in December (or was it late November? I don't remember now.) when I first had 24 consecutive hours of feeling like someone had taken my heart into their fist and was somewhat randomly squeezing and shaking it  wildly. 

Best I can tell, they get triggered when I overdo things. Yesterday, I had a pretty good day and was even able to get out into the sunshine and distribute flyers for our school's used book sale in a nearby business district. ( For the locals: Multnomah Village.)

The first weekend Scott had his kidney stone issues? I had three days solid of it. (But I was a good wife and didn't mention it since I knew it wasn't as urgent as what he was going through. :) 

Anyway, it's apparently "just" a regular arrhythmia with early beats followed by the strong beat that's what I really feel. Not that I've heard it from a doctor yet, but the technician who took the recordings over the phone assured me that's all it was. And googling palpitations and early heartbeats, which is what the technician said she was seeing on the strips, makes it clear it's all pretty benign.

Which is good. Except it probably means there's nothing to do for it and it's somewhere between uncomfortable and painful, exhausts me when it goes on and on, and keeps me feeling dizzy and light-headed while it's going on. Gets worse when I'm active, especially if you consider "talking" or walking to be active.

More news when I have it. I'll be leaving a message for my doc tomorrow to try to touch base with her. I'm guessing that it'll be yet another thing that makes multiple of my docs look at the data and say, "Hmmm ... very interesting."

I'm so ready to stop being so interesting to doctors!  


 

PFAM: Seeking Travel Tips/Stories

It's feeling a lot like spring here in Portland, but I know it's just a tease before the winter weather comes back. And in winter, non-gardeners like me like to dream of vacations to come. (Gardeners, of course, spend this time of year checking seed catalogs and dreaming of the fruit, veggies and flowers to come.)

So for the February edition of the patient-centric Patients For a Moment blog carnival, I'm looking for Spoonie travel tips (if you're not familiar with The Spoon Theory, you need to go read it right now.) -- how do you (or don't you?) take a vacation when your chronic illness insists on coming along for the ride? What do you do to ease the challenges so you can have fun? I'm also interested in your vacation stories, both the successes and the failures. I've had both, sometimes on the same trip, and I'll share them in a separate post.

So here's the deal on PFAM: You can contribute a new post, or you can offer a post you've made previously if you've addressed this stuff in the past. Deadline for contributions is midnight pacific time on Monday, Feb. 13, and you should send the following information to sickmommapdx@gmail.com:


1. Your name (as it should appear)
2. Your blog’s name
3. Your post’s title
4. Your post’s URL



(And truthfully, while I'd very, very much prefer to get your contributions by midnight Feb. 13, please go ahead and drop me an email if you're running late but would have it done before I post on Feb. 15! :)

Pain + Insomnia = Painsomnia

I take pain meds as rarely as I can manage.

And much of the time, I can manage my days without pain meds, relying mostly on distraction (even when the pain is bad enough that I can't concentrate on reading a book, I can watch a movie from a DVD borrowed from the library or find something on cable's On Demand menu to get outside of my own head for awhile) and/or ice. (Heat just makes my joints achier so I'm not a fan of it. But oh, how I love my ice packs!!)

Nights are harder, because once the lights are off and Scott is asleep (I so envy his ability to fall asleep quickly!), there's nothing to distract myself from the pain. And oh, does it make itself known. And that makes it hard to fall asleep, as I toss and turn trying to find a position that doesn't make my body complain loudly.

I guess it's a pretty common phenomenon. I mean, I know it wasn't unique to me, but I was surprised to learn on Twitter recently that there's even a name for it: Painsomnia. No, it's not a real medical term -- although I bet there is one for it -- but it's something that patients have nicknamed. 

More often than I wish, I end up getting out of bed, where I sleep with five pillows helping to support various body parts on top of a four-inch-thick memory foam mattress pad, and heading downstairs to sleep on the couch that replaced my literally falling-to-pieces recliner. (The couch is awesome and reclines electronically at the push of a button!) Sleeping on the couch lets me avoid hip and shoulder pain from lying on my side in bed.

Sometimes, like tonight, even that doesn't work. So I do the internal debate on whether to take a pain pill or not. I'm not sure why I torture myself over it, other than a belief that pain meds work best when taken infrequently to keep my tolerance levels down. Then when I do take a pain pill, it reminds me of Ellie's birth, when I finally opted for an epidural after 16 hours of Pitocin and 36 hours after my water broke and I wondered aloud why I'd thought it was so important not to have one. (And about 8 hours after the epidural, Ellie was finally born!)


The other problem is that pain meds seem to act as a sort of stimulant for me; it's not that they make me feel full of energy so much as I just can't fall asleep. Which means I get to appreciate how well my pain levels are being controlled by the meds but I don't get the sleep that I want. (Which, oddly enough, also mimics my childbirth experience since I opted for the epidural mostly in hopes of getting a nap since Ellie was taking her sweet time in making an appearance. It didn't actually work for what I sought, which was sleep, but it sure made the labor/Pitocin pain disappear for awhile.)

So if I do take a pain pill late at night for the Painsomnia, then I end up contemplating taking an Ambien. But even though I've had both administered together while hospitalized, I'm too afraid of mixing those meds at home. Too many celebrity deaths where they point to the mix of prescription and non-prescription drugs as the cause add to my leeriness of taking a sleep aid and a pain pill at the same time.

Well, I'm definitely rambling here. Mostly my point was to share what I thought was a really cool word for a situation I've struggled to describe and explain. Thanks for letting me ramble. :) 

(Not Even Close To) Wordless Wednesday

Back in November, I posted asking for suggestions on what I could do with little bits of cool metallic fabric called "tissue lame" (and that last E needs an accent mark on it, but I have no clue on how to do that on Blogger!) that were too pretty to throw away. 

My Aunt Marsha suggested I put them into fancy glass bottles, and well, it was following up on that suggestion that led me down the path to a crafty (supply) powder room:

Technically, I started with the plastic jars (from the cashews my husband gets at Costco) on the left, then the salsa bottle on the far right. But then I started looking at some of my other craft supplies and wondering why I was hiding them all away. So I decided to use the glass jar that Ellie had gotten some candy in a couple years ago for the holidays (William-Sonoma uses the cutest curvy bottles!) for some rhinestones. After all, they're so pretty, they ought to be on display. 


Then I started looking for glass jars in a variety of places and finding that I had lots of stuff to display! The round jar, second from the right above, holds my felt "spaghetti," strips of felt that I glue on hair clips to cover the metal. 


And, well, I had to expand past that one shelf:

An Appaloosa pony Ellie made at camp last summer guards the jewels.

On the top, I have beads, fancy rhinestone buttons, regular buttons, a tall jar of spools of thread, small jars of 15mm rhinestones, and a ginormous jar of different kinds of hair clips waiting to be transformed.

What do you think? I kind of like using my supplies as decor ... although I'm not sure how inconvenient it's going to be to have my thread collection up in that jar. We'll see! (Thanks, Aunt Marsha! :)

Meanwhile, the super secret project that created most of those snips of fabric that inspired all this? I made roughly 100 butterfly and dragonfly magnets for family members for holiday gifts:

Inspired by the kanzashi butterflies from Diane Gilleland's book Kanzashi in Bloom: 20 Simple Fold-and-Sew Projects to Wear and Give

Looking Back At 2011

I'm not sure if it's just my general foggy memory or if it's yet another side effect of my chronic illness, but I can barely remember what I had for dinner yesterday. I definitely barely remember what happened in 2011. 

So I don't even really remember what I blogged about in 2011, much less which were my favorite posts. That's the challenge requested by Leslie of Getting Closer To Myself, who will host the next edition of the Patients For A Moment blog carnival. So here's my recap of the year that was.

Last January, in a post titled It's All About The Attitude -- Or Is It?, I wrote about how delighted I was about a New York Times article that cited studies showing that getting (and surviving) cancer were not affected by the patient's attitude. A kick-ass, conquer cancer attitude may help a patient deal emotionally with the treatments of the disease, but it won't raise that patient's likelihood of surviving it.

Also last January, I wrote a parenting post titled Judgement, about the snap judgments people make based on appearances, particularly when it comes to parents of young children. You can't tell from looking at people what they're dealing with. 

In March, I had the pleasure of hosting Patients For A Moment on the topic of guilty pleasures. That had to be one of the most fun topics, both to write about and to read everyone else's contributions! Actually, I was lucky enough to host PFAM twice last year, and I was also rather pleased with the edition I hosted in November on finding inspiration on how to pull oneself out of the dark places that chronic illnesses sometimes leave us. (Ooh, and while I'm writing about PFAM, here's a plug: I'm going to be hosting next month so please check back in early February to see my topic! And Leslie is still looking for more hosts for the now monthly blog carnival; check out the responsibilities here and drop her an email if you're interested. It's a wonderful opportunity to bring new readers to your blog and for you to get multiple viewpoints on topics that are close to your heart.)

In May, I came "out of the closet" and shared the news that I had been approved (two months earlier) for Social Security Disability. It's funny, I still have a sense of shame about being on SSDI, and it's not something I volunteer, even when asked if I'm working. Or why I'm not. I also have a bit of guilt, that somehow, by claiming benefits I earned, I'm contributing to the money issues our federal government is facing. I know it's somewhat irrational, but c'est la vie. I console myself by counting all the ways it's helpful to my family for me to be able to contribute financially however small an amount. It makes it possible for us to add enrichment activities to Ellie's life (she just started gymnastics last week, and, as you may remember, is learning to compete as an "artistic" roller skater {essentially doing the same things a figure skater does in ice skates}) as well as to pay for housecleaners once or twice a month to ease the burden on my husband. Most importantly, we once again have some pad in our budget; we weren't running up debt or even living paycheck to paycheck as many families dealing with disabilities caused by chronic illness, but I feared we were one disaster away from ending up in those black holes.


In October, I wrote about The Invisibility of Invisibility Chronic Illness, as it struck home, once again, that the only people who truly grok what it's like are those who are either walking the walk themselves or watching a close loved one walk it.

I'm a bit chagrined that it took me over four years to find out how useful a very common tool is for those of us taking many, many medications. Who knew there was a reason they have all those pill dispensers at every pharmacy? :) Ok, it wasn't an earth shattering post, but boy has my pill dispenser changed my life. And if I ever make it back to the dollar store, I'm going to follow my friend Mo's lead and buy three more so I only have to refill it once a month!

Although I have doubts that I've learned the lesson well enough to prevent it in the future, I finally recognized a trend in my life with chronic illness: I make poor choices when approaching and even when I've crossed the line to Too Much. Over and over again, not just in 2011 but since I started blogging in 2007, I keep writing about how days or weeks or even months didn't go the way I'd planned: The lesson I seem to be having trouble learning is to pay attention to my body and stop, or at least slow down, when it's clear that I've overextended myself energy wise or am headed in that direction. Instead, it's almost like I decide subconsciously that, "Ooh! I'm clearly headed for being bed- and/or couch-bound again, so I better try to get as many things crossed off my list as possible before that happens! Hurry up! Do more, because you don't know when you'll be able to do XYZ again!" And actually, I'm feeling the effects of having done just yesterday exactly what I wrote about in that excerpt. Sigh. 


Anyway, that's the year that was. Hope you enjoyed the trip down memory lane thanks to Blogger's archives of Sick Momma. Meanwhile, be sure to visit Getting Closer To Myself on or after January 15 to see everyone else's contribution to the blog carnival! 
 _____
And to my fellow bloggers, the deadline is midnight Jan. 12 if you'd like to participate; see the call for submissions for details.