Sunday, April 29, 2012

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.

Friday, April 27, 2012

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! :)

Thursday, April 26, 2012

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.

Friday, April 13, 2012

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?

Wednesday, April 4, 2012

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!

Check out our family's Etsy store:! We add new items frequently, so check back often!