Wednesday, March 12, 2014

Product Review: My ID Square

Sorry -- I distorted the QR because I realized I didn't want my info to be public. And hopefully, I distorted enough that scanning it doesn't work!

I'm complicated in so many ways. In addition to my mystery illness and my collection of assorted diagnoses, I juggle a half dozen or so doctors and an ever-changing laundry list of medications. Even my husband would have a hard time listing them out if I were unable to communicate.

Even before I got sick, I had doctors recommend I wear some kind of medical alert jewelry to identify my penicillin or other allergies. But that never really worked for me because I'm super sensitive to metals against my skin, especially ones worn over long periods. Surgical steel and other supposedly hypo-allergenic metals? Yep, they create the same kind of blisters as sterling silver and other metals. I can tolerate 14-karat gold for some periods of time, but even that eventually irritates my skin if it's in constant contact. The only metals that have never caused a nasty rash are niobium and titanium, and there's just not a lot of medical alert jewelry made from those metals.

The nice folks over at My ID Square contacted me last month to see if I'd be interested in reviewing their IDs. I looked their products over, and politely declined because all their items included metal in one form or another. After a few emails back and forth, they offered to make me a SquID without any metal at all. And I've been wearing it since it arrived a couple weeks ago.

It's kind of ingenious. The SquID itself is some sort of plastic/lucite square with a QR code that can be scanned on one side, and the URL and my ID code on the other side. It's waterproof, and I don't even take it off to sleep or shower.

On their website, I was able to enter contact info for all my doctors, my medication list, and a list of my primary diagnoses.

My thoughts, for what they're worth:

  • I think these SquIDs would be great for kids. They're colorful and fun, and fit right in with the trends I see at my kid's school and at the skate rink. My kid would totally wear one of these. In fact, if the cord for the bracelet they sent wasn't black, she'd probably have wanted to wear mine!
  • I'm not sure they have a very professional look for adults who want to wear them to the office, although some of them come closer than others. And they're definitely not date-night dressy. However, they'd be great for wearing to the beach or when dressed casually. (I told my mom that I thought it was closer to my style than the more grownup, jewelry-looking varieties you can find elsewhere. So take that as you will.)
  • I was really impressed with the company's dedication to figuring out a way to create a SquID that I could wear. When I confirmed that I was allergic to all the options on their website, they went out of their way to figure out how they could make their product work for me. I'm confident that they would respond similarly for a regular customer too.  
  • It seems really durable. Like I mentioned above, I've been wearing mine non-stop since I got it. And I've rubbed at it and scratched at it to see if I could damage it or make it look like it would wear out, but it shows no sign of damage. 
  • I'm mildly concerned about privacy with these. Anyone with a smart phone can scan the QR code and get my name, date of birth, medical issues, etc. But there's also a notification that goes out if/when someone scans it, so at least I would know if it were happening. And it hasn't happened yet, and probably isn't a major concern. I do think the benefits of having this info available to first responders and emergency room personnel outweighs the risks. 
If you think you might be interested in buying one of these, go visit and the code SickMomma15 will save you 15 percent through April 15. 

Disclosures: My opinions are totally my own, and I've mentioned the only negatives I can think of about this product as well as the positives. The company did provide me with a free SquID for review purposes. 

Friday, February 28, 2014

Why I Blog

This post is written in response to a call for submissions from Leslie Rott for a new blog carnival for the Partnership for Palliative Care, where she's currently interning.

My mystery lady -- do you think she knows the answer to my mystery illness? 

I started this blog for the same reason most patient blogs were started: I got sick in 2007, and it became overwhelming to keep my family updated and to keep answering the same questions about which doctors I'd seen, which tests I'd had and what the results were, and so forth.

More than that, though, it became an emotional outlet for me, and a connection to other people who were also dealing with life-changing illnesses. After all, I'd gone from being a stay-at-home mom of an energetic toddler (that's probably a redundant phrase, isn't it? are there any toddlers that aren't energetic?) to barely being able to care for myself, seemingly overnight.

That connection to the chronic illness community, which I'd never known existed, was a lifeline. There's a shared experience among people with chronic illnesses, no matter the diagnosis. And it was so comforting to have the empathy from people who had been there, done that, and were coping somehow.

For me, the initial onset of my chronic illness (the acute phase, if you will, and then some) was an emotional roller coaster. The high doses of Prednisone I was on didn't help with that! And there was something cathartic about putting it all out there into the void of the Internet. Honestly, I think blogging would have been helpful to me, emotionally, even if no one ever read my blog. The fact that people did read it (especially people not related to me!) was a miracle, and some of those people became friends, whether I ever meet them in person or not.

Blogging also helped me process what was happening to me. I'm a writer -- I've been one since childhood, and I spent my professional life as a reporter and editor. I sometimes think my brain doesn't really understand anything unless or until it's gone through my fingertips on a computer keyboard. Writing about the various tests I've undergone required me to research them a bit so I could explain them, and in doing so, I understood the tests and my results better than I did in my doctor's office.

It's a little ironic for me to be posting about "why I blog about my chronic illness" because, as some of you know, I don't blog often anymore. But I still feel a strong connection to this blog, and its readers, and the rest of the chronic illness community. My health is in a holding pattern: I often feel like I'm holding on by my fingernails, but I haven't lost my grip yet. I decided my quality of life was better when I minimized my doctor visits, and while I still see doctors more often than my very healthy husband or child, my only appointments most weeks are with my acupuncturist (whose work has had a huge impact on my quality of life).

Friday, January 24, 2014

Running On Empty

Running On Empty
Running on Empty by Chris Metcalf via flickr

It's been about a million years since I felt like I was full of energy. But lately, I'm really dragging. 

Somehow, I thought once Ellie was older (she turned nine last month) and needed less entertainment and active supervision, it would be easier. And it is, in some ways. I'm blessed with a kid who can happily spend hours with her nose in a book or playing with her Monster High dolls. (Yeah, I hate those dolls for so many reasons. But they're the big thing right now among third-grade girls, and somehow, even though I refuse to buy them for her, she has accumulated a handful.)

But nine-year-olds have a surprising amount of homework these days, way more than I remember having. (And I was nerdy enough to keep a diary of my math homework in third grade, so it's not just my faded memory that I'm comparing!) And supervising homework (which is mostly keeping her on task) is exhausting. 

She also has more activities that she needs shuttling between. Now that she's at public school, she goes to Hebrew school twice a week. She lacks self confidence in her math skills, so she now does Kumon twice a week. And she skates three times a week, but I don't do any of that shuttling.

It's funny -- I used to dread weekends because they exhausted me due to having my family home more hours and doing more with them. These days, the weekdays pile on each other and leave me hanging on by my fingernails, and weekends are good because I'm usually not in charge of anything.

I'm sure it doesn't help my fatigue levels that my thyroid is out of whack. Apparently, my body didn't like the switch from Levoxyl to Synthroid when the former was taken off the market, and a routine test last month showed my TSH level had skyrocketed from 1.0 six months earlier to 9.98. Tweaked the dosage after the results came back, and now I'm waiting to do another test next month to see if my hypothyroidism is back under control. But I've never really noticed an improvement in my energy levels when my thyroid levels are under control versus when they aren't. Maybe this time will be different -- I can only hope!


Wednesday, January 15, 2014

New Year, Same Old Chronic Illness

I recently got a new (mean!) comment on a blog post I wrote back in December 2007, when my illness was still fairly new and extremely debilitating.

Before I'd adjusted and gotten used to it, and accepted that my world had shrunk dramatically.

Back when I still thought it was just a matter of time and the doctors would figure out what was wrong with me and know how to cure it. Back when I still believed that most illnesses had a cure.

Back when I still believed that someday, my life would go back to "normal."

Once I got over my disbelief that someone would bother to spew meanness about a six-year-old post on a patient blog, I re-read that post and remembered how, back then, it felt like I was ricocheting between bumpers on a pinball machine (Remember pinball machines? I'm dating myself!), constantly reacting to the latest bad news.

These days, I don't really worry about whether I'll ever get a real label for my chronic illness. I know it's unlikely that there's anything like a "cure," although I still hope for remission.

I believe chronic illnesses are something to be managed and, when necessary, accommodated. I've learned that like with Newton's third law of physics ("for every motion, there is an equal and opposite reaction"), that I can choose to do activities as long as I'm willing to "pay" with increased pain and fatigue. And sometimes I choose to do things knowing I'll pay the piper later, and other times I decide that the price I'd pay is too high and I don't do that activity. And sometimes I regret the choice I made, whichever way I choose.

These days, life is what it is. In some ways, I do more than I could have imagined back in December 2007 if I'd known I'd still be dealing with those health issues this much time later. My kid is older (I can't believe she's 9 now! How did this happen?) and can understand my limitations while not needing quite so much hands-on care, which means we can actually spend more time together now.

Mostly, I try not to dwell as much on my health. I try not to think about it. I try to see doctors as rarely as possible. I don't particularly like to talk about it, although I still sometimes whine about it to my husband. (And he might argue that the "sometimes" is more of a "frequently" ...)

I like to focus on my family, our little crafty business Foster's Beauties, my hobbies and my volunteering. I spend way too much time on Facebook and, for that matter, in both paper- and e-books.

That's life here in 2014. How's your life looking these days?