Roasted Stuffed Zucchini

I am working on cutting down on sodium (difficult because I am a major salt-tooth, although I don't eat processed foods so I guess that gets me part of the way there). I came up with this easy low-sodium dinner last night, when I had some time after work and was puttering in the kitchen (one of my favourite things to do!). This recipe makes one serving, but it would be pretty easy to double, triple or quadruple as needed. Apologies for the awful photo quality -- I took it on my webcam before I dug in.

Roasted Stuffed Zucchini

1 green or yellow zucchini
2 tbsp crumbled feta cheese
1/4 cup whole wheat couscous
2 tsp extra virgin olive oil
2 tbsp chopped green onion
3 finely chopped cherry tomatoes (or a bit of chopped regular tomato... I just had cherries on hand)
small handful of fresh basil and parsley, chopped
paprika
freshly ground pepper

1. Preheat oven to 350 degrees. Cut zucchini in half lengthwise, then scoop out the flesh and chop into small pieces. Gently sautee in olive oil with the onion and cherry tomatoes, for 6 - 10 minutes until softened but not browned.

2. Meanwhile, cook couscous as instructed on the box. (I usually skip reading the box and just put the couscous in a bowl, barely cover it with boiling water from the kettle, and let it sit, covered, for 4 or 5 minutes.)

3. Combine couscous, feta, sauteed vegetables, chopped herbs and pepper to taste in a bowl.

4. Press mixture firmly into hollowed-out zucchini halves. (I piled it quite high and it didn't fall out during roasting.) Place zucchinis in a baking dish, sprayed with canola cooking spray. Sprinkle with paprika to taste.

5. Roast in a 350 degree oven until zucchini halves have softened and caramelized, and the top of the couscous mixture has crisped up and browned a bit - about 30 minutes.

Yum!

RA pet peeve of the day

Packaging!

I am so sick of struggling with bottles and cartons, boxes and those horrible hard plastic things that seem to be made up of about 47 layers encasing scissors or pens or whatever it is I just bought. You need scissors to open the bloody scissors! This is one of the most annoying things about living alone, which I otherwise mostly love.

I'm feeling grouchy about this because there is a bottle of soy sauce in my fridge that has been unopened for months, and will remain that way, and I had really wanted to put some on the leftover sushi I brought home from the restaurant last night.

Update!

Trolling around the RA blogosphere this afternoon, completely by accident I came across this post on LivingRheum, about the Pyrrana, a device that cuts through exactly the kind of packages I've been complaining about. Looks like a great find!

Illness at the Office

Today's Globe and Mail has an interesting article on disclosing illness in the workplace.

I'm reasonably new to my job and so far my employers know only that I have a heart condition which is under control, but which requires me to spend time at the hospital occasionally for appointments and tests. They don't know anything about my arthritis yet (which resulted in an extremely unfortunate bowling incident shortly after I was hired). One colleague I feel particularly close to knows about my ICD.

My employers' response was extremely positive, but I had no idea what to expect when I told them and I think most of us can relate to the fear that disclosing an illness will have negative consequences.

The best compliment

I had a lovely weekend. Friday night was a good friend's wedding, and an opportunity for seeing some of my closest friends who have scattered across the province for careers and school. I danced for nearly 3 hours straight! I felt it the next day, of course, but I didn't care.

On Saturday night I stayed with one of my best friends at the home of her parents. They had a dinner party, and at one point they pulled me over to meet a good friend of theirs who had just had his ICD implanted. He was surprised by my age and wanted to hear all about my ICD and why I had it. We compared scars (he won, but it'll fade!) and device models (the same, it turned out), and he and his wife were excited to hear that I had backpacked through Europe just a few months after my implant. They were both lovely people with a lot of sudden changes to navigate together.

My friend's parents told me later they hoped I didn't mind beind introduced like that, but that he'd been very ill before his implant and had had a number of surgical complications, and they wanted him to meet someone who was healthy and optimistic, and lived a full life with her ICD. I was touched and pleasantly surprised to hear those words applied to me.



Later that night I was lying on a couch in their living room watching The Big Chill, which I'd somehow never heard of (and I should have, because Kevin Kline looks awfully dishy). I felt three evenly-timed THUMPS in my heart, that startled me so much I jumped and sat bolt upright (still don't know what it was, but I've written down the date for my next checkup). I breathed deeply for a few minutes, then lay back down and finished the movie. I thought about the man I'd met that night and everything he'd gone through, and felt connected to him in a way that was strange but very comforting.

Maybe all the communal husband-swapping and drug-taking, not to mention Kevin's tiny 1980s jogging shorts, made me delirious.

A very good start to the day

It's probably all psychological, but I feel so much better if I'm able to get outside every day and get some exercise and fresh air. When I don't, I feel restless, stiff, sore, and irritable.

This morning I ate breakfast on my balcony. It was sunny but not hot, and the little container garden I've been attempting not to kill was looking green and healthy.

I sometimes get a little overwhelmed living on my own. It's nice to be reminded to enjoy it once in a while.

So sorry, I can't make it. I'm busy being normal that day

I saw my wonderful rheumatologist yesterday for what I think was a very productive appointment.

The last time she saw me in December I was really struggling. We had been fighting and fighting with my provincial government's drug benefit program for provisional Enbrel coverage, as I'd just graduated and didn't have workplace insurance yet. I ended up missing 3 doses before they agreed to cover the drug, and I was a mess when I went in to see her. I couldn't manage stairs, dress myself, or even hold a telephone, so she was very pleased with my progress since starting back on the drug.

Having multiple health issues means I have to learn to schedule treatments, assessments and diagnostic procedures far enough apart that they don't overwhelm me. I learned this lesson when I was diagnosed with HCM, because at the same time I had what felt like a million other little medical issues that required lots of tests and hospital time. I couldn't help it at the time, but I now know that if there's any way to avoid hospital overload, I should find it!

Now that my RA is reasonably well-controlled, the ICD is in, and the only thing left on the list right now is some further investigation into the mysterious Brugada Syndrome, I think this is a good time to get back on top of my scoliosis. My spine hasn't been looked at by an expert since I was 12 or 13 and still growing, so I asked my rheumatologist whether now might be a good time to see someone for an assessment again. She agreed, especially as my cardiologist is suspicious that the scoliosis is contributing to my shortness of breath (because there's not a whole lot of room for all of my organs).

So sometime soon I shall be off to see a spine surgeon. Not necessarily for surgery (I doubt surgery is an option now), but to assess the degree of curvature and to investigate what other possibilities I might have for reducing pain or even reducing the curve.

Illness can make us feel so out of control, but being able to take charge of my health care scheduling in this way made me feel great, a little more in charge of things than usual. I realize this is a luxury that many people don't have (and there have been times when I haven't had it, either), but having a non-urgent medical problem means I get to approach treatment in a way that I know won't burn me out. And that feels good!

On Dating

I just read Leslie's "Everything Changes" Part II post this morning at Getting Closer to Myself. She writes very honestly about the impact that illness can have on our relationships and sex lives, a topic I think is especially important for those of us navigating our twenties with chronic illness. Most of us, even if we're perfectly healthy, are far from having that aspect of our lives figured out. Add a time-consuming, body-altering, life-changing illness to the mix, and things get even more complicated.

I learned I would require an ICD after a three hour long electrophysiology study (in which catheters are inserted into the heart's chambers to map its electrical pathways and rhythms). I remember laying in my hospital bed afterwards, thinking everything over. Of course I wondered what the surgery would be like, how the ICD would look, what it might feel like to be defibrillated. But foremost in my mind was a fear that the ICD would make me hideously unattractive to men. "Come on," I thought. "I haven't even figured out how to tell guys I have arthritis!"

A year later, I have yet to really put that fear to the test. I took a break from dating for some months after the surgery, and although I'm gradually getting back in the game, I haven't been on a second date in quite a long time. On one hand, I've become a lot pickier over the years, but the truth is I'm also quite terrified of having to explain my health issues to someone I might really like.

What if I scare him off? What if he's grossed out by my ICD? What if he's looking for someone a little more... nimble?

Objectively, of course, I know I wouldn't want to be with him anyway, but that doesn't stop me worrying. Because even as illness complicates my own relationship with my body, it also makes me long for someone else to love it (or at least be attracted to it) unreservedly. At this point, few things would be sexier than a guy who wanted to come with me to the hospital.

Leslie writes that she longed to feel "normal" after her diagnosis, and I've frequently felt the same way. I want to do the things everyone else does. Sometimes that means doing things I probably shouldn't; refusing to ask for help lifting something, going one or two over the one-drink-a-week limit my rheumatologist has set for me (thanks to methotrexate), or even going out with a guy I know I don't really want to be out with. Just to feel like that elusive "everybody else."

Laurie Edwards of A Chronic Dose wrote about the day she stopped hiding her illness from guys here, in the Boston Globe Magazine. It sounds incredibly freeing, and I really, really hope I'm close to getting there myself. My last serious boyfriend, who stuck around long after the initial, fumbled disclosure ("I have arthritis." "Oh!") and is still a good friend, thinks I should go into all first dates refusing to tell anything other than the truth about my health; even letting my scar show above my shirt collar. Any guy worth the time, he thinks, won't bat an eye. Of course this doesn't mean I'm going to launch into my life story over coffee, or leave Enbrel needles lying around for him to step on, but maybe it does mean that if he asks questions, I'll tell him the truth.

And see where it gets me.

Super cool

I just love this video of 20-year-old Belgian soccer player Anthony Van Loo's implantable cardiac defibrillator (ICD) saving his life. Watching him sit back up afterwards is awesome. I've seen it before many times, but not with these great subtitles to explain just what's happening.





Although the media deemed this a "heart attack", there's a difference between a heart attack and a cardiac arrest caused by a dangerous arrhythmia like ventricular tachycardia or ventricular fibrillation. An ICD delivers a jolt (in the case of my Medtronic Virtuoso, up to 35 J) to the heart to restore normal sinus rhythm.

Thanks to Craig at V-tach for posting this!

Adventures with Enbrel

Last night I gave myself my weekly Enbrel injection. For some reason, there is always a tiny drop left in the syringe after I've injected it, and I've developed the pointless habit of flicking my wrist to shake the droplet off the end of the needle before I recap it.

I must have gotten a little too excited and flicked a bit too vigorously, because the syringe flew through the air and landed in the middle of my bare foot with the needle embedded there, standing straight up.

Luckily my feet are arthritis-free, so it didn't hurt much. I sort of wish I'd taken a picture, though!

A new diagnosis. A new me?

Although juvenile rheumatoid arthritis comes with its own not insignificant set of hurdles, I do believe that in some sense I was lucky not to have had the opportunity to create an "arthritis-free" life, the loss of which I would have grieved after diagnosis.

Over the past two years, my cardiac diagnosis has given me some idea of what this is like. Coming as it did during my first year of grad school and on the heels of my uncle's sudden death, it still sometimes feels impossibly tangled in a mess of difficult experiences that I don't think I will ever really sort out. In response, I put my head down and muddled through, grieving with my family, spending hours alone in hospitals, staying up all night studying. I got through it, but much of the experience is a blur.

Now I occasionally find myself surprised by everything that's happened. Sometimes I find it hard to believe that this

isn't going anywhere anytime soon. (And when it does, it'll just be replaced by another one.)

I know I'm incredibly lucky to have it. It would probably have saved my uncle, and it's amazing to know that this little metal box is watching my heart like a hawk, ready to get to work should I ever need it. Now, when I feel my heart begin to flutter, I experience a moment of anxiety wondering if I'm about to be shocked, not if I'm about to drop dead -- clearly, the former is very much to be preferred. And now that I'm a year post-implant, I don't even feel it there most of the time.

But sometimes I'll be lying in bed or reading on the couch or walking or working, and it will start to itch. I'll reach up to rub it and feel the hard metal underneath my skin, the bumpy top where the leads emerge and loop around into my right atrium and ventricle, and I'll think, "What?! I have to keep this thing?"

It seems I have to work at this in a way I never did with my RA. Because it doesn't cause me any pain, I'll often come close to forgetting about it until something stops me short; a day of tests at the hospital, a bout of shortness of breath (which I had before of course, but now there's a reason), a twinge along my implant scar.

As nice as it may feel to forget about illness, it's not a great idea. When we do (if we can), we just continue to be blindsided by it, and we never move past that first "what?! I have to keep this thing?" phase. The challenge is to find a way to incorporate the diagnosis into our identities without letting it overtake us. When you're 2, and you're diagnosed with rheumatoid arthritis, you get to skip this part.

I don't have the answers yet, but I'm working on it. And as I go I'm learning a lot from other bloggers, from friends and from family, about creating a "new me" that's just a slightly modified - braver, more resilient and one part titanium - version of the old one.

Connections

Do you ever see a stranger who appears to share your illness, and wish you could connect with them?

Yesterday, I took a day off from work and went on a fun family daytrip. At a historic home we stopped at, a girl who looked about 18 gave us a wonderful tour. She appeared to have quite severe scoliosis. I suppose I'm hyper-aware of the outward manifestations of the condition; I've always been self-conscious about it. She looked unbothered, although she did sometimes sit as she spoke to us, and I imagined she must have been in quite a bit of pain. Standing for long periods is one surefire way to wreck my back for the rest of the day.

I know if someone said to me, "It looks like you have scoliosis/RA/have had cardiac surgery; me, too," I'd be thrilled that the person had decided to reach out. I always want to do that. I want to tell them I get it. I never do, though; what if I'm wrong, after all? But it's still strangely comforting to see people getting on with things, participating in hobbies or jobs they enjoy, seeming happy, as this girl did.

It makes me feel connected to the world, like the network of chronic illness blogs I only recently realized were out there waiting to be discovered. There are so many of us, all different, all capable of doing great and varied things.

Maybe this girl noticed my scoliosis, too. I kind of hope she did.