Saturday, October 14, 2017

Ten Years Later

Photo by Jamiesrabbit
Ten years ago today, I started this blog because I was four months into a mystery illness that had taken over my life. I was scared -- panicky even. I didn't know anyone who had ever been sick without a diagnosis for an extended period of time. 

One day, I was a (relatively) healthy stay-at-home mom, and the next I was suddenly too sick to take care of my toddler, who had to go into full-time daycare. I literally went to bed one night fine, feeling like maybe I was coming down with a cold, and woke up the next morning unable to get out of bed. It was the start of my roller coaster ride with chronic illness

Now, a decade later, what has changed? In some ways, a lot. In other ways, not so much.

The big thing that hasn't changed is I still don't have an umbrella diagnosis, the diagnosis that will explain most or all of my health issues. Things still ebb and flow between good days and bad. I still cope with intense fatigue and joint pain. 

The biggest change is that while I'm not entirely zen about my health, I've learned how to live within my limitations. I sometimes choose to push my boundaries beyond what I can tolerate -- I took a glass class this past week that was thoroughly exhausting and has left me in more pain than I've had in a long time -- and pay the consequences. 

But most of the time, I simply do what I can and accept that I can't do a lot of things I'd like to. (And sometimes I whine to my very supportive husband about how unfair it is. Like I said, I'm not zen about it. Yet.)

Due to a variety of reasons,  most of my health care team has changed. I lost my favorite PCP to Kaiser (an HMO). My immunologist committed suicide. My GI doc retired. My endocrinologist got tired of the hassles of private practice and went to work for the VA. A couple subsequent PCPs moved away from Portland and another became a hospitalist. 

The result is that I don't have anyone actually trying to figure out what's causing my health issues anymore. I find that mildly depressing but it's nice having a lot fewer doctor appointments.

My (then) preschooler will become a teenager in a few months, which is both scary and wonderful. I have some anxiety over whether I am physically up to arranging and hosting her bat mitzvah in a few months, but I try to tell myself to just face it as it happens because it will be what it will be.

I still have a passion for fused glass, and I think that focus on making/creating has been good for me. I wish I could do more, but doesn't everyone wish they had more time/energy/opportunity for doing the things they love regardless of their health? 

I'd like to say thanks to those who have read my blog (back before it went dark for several years) and offered support and empathy. Finding the chronic illness community through blogging really helped me feel like I had a community even when I was too sick to leave the house. My world shrank when I got sick, but the people I met through this blog and other blogs helped me feel far less alone. What started as a way to keep family and friends updated on the current status of my health grew into a safety net. I'm very grateful for all of you.

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?

Tuesday, September 10, 2013

What My Chronic Illness Feels Like

Hey, remember me? I used to post more often, but lately I feel like I don't have anything new to say that I haven't already said so my blog has languished. (See apathy below) But Duncan sent out a topic for the September edition of Patients For A Moment that inspired me to get back to this blog. In the sense that imitation is a form of flattery, I've used a similar format to Duncan's post. 

Even people who share a diagnosis experience their chronic illness differently. And while I continue to collect secondary diagnoses, my primary diagnosis remains unknown. Or maybe I don't have a primary diagnosis -- who knows?

But here's how I feel. For today, at least.

Chronic Fatigue: I've written a lot about my intense fatigue over the years. My most popular post explained the difference between clinical fatigue and being tired. But what does it feel like? It feels like walking through the ocean, water above my head, fighting the undertow. Even the little things, like taking a shower or dressing myself, can be more than I can do when I flare. Even on good days, I so miss the days when taking a shower was energizing instead of enervating.

Joint Pain: I hurt. Every. Single. Day. Sometimes more, sometimes less. Over the years, I've learned to live with it and push it into the background most of the time. I use pain meds as rarely as possible because I'm always worried that the pain will get worse than it is and then I'll really need them. But I also know that out-of-control pain can spiral up rapidly and it's better to be ahead of it than desperately trying to catch  up and get it under control.

GI Issues: My GI stuff comes and goes, but has been sticking around for the past year or so without relief. It's primarily lower left quadrant pain, and ranges from a dull ache that I can ignore fairly well during the day thanks to distraction to feeling like I've been stabbed with a really big blade. Sometimes I feel like my belly is going to explode, and that exploding would be a huge relief. And the frequency and length of my bathroom visits have increased too, but I'm not all that comfortable discussing that publicly.

Tachycardia: My resting, horizontal, quiet heart rate hovers around 100 beats per minute, and I'm generally around 120bpm when I'm upright. Add conversation, and my heart rate goes up another 30bpm. Add movement, and it goes even higher. I usually don't feel like my heart is pounding, but sometimes I'm aware of it. I wonder how much my heart rate contributes to my fatigue, but my cardiologist strongly believes that my heart issues are secondary to whatever is causing my health issues.

Malaise: Malaise is the general sense of not feeling good all over that you get along with the flu or most other illnesses. It's feeling weak and yucky and sick, lethargic and like you've been knocked on your butt. For me, it goes hand-in-hand with my clinical fatigue, and the worse the fatigue is, the worse my malaise is. Both ebb and flow, but are present every day for me.

Arrhythmia: Ever feel your heart skip a beat? It happens to everyone, and most of the time it's no big deal. Sometimes it can be very dangerous, but I'm lucky enough not to have that type. But when I'm having them four or more times a minute, it gets painful. And it's tiring too, although I'm not sure I understand why, but my fatigue levels go up pretty high when my arrhythmia is acting up.

Frustration:  I got sick in June 2007, and have mystified doctors ever since and I'm oh, so tired of this! I'm frustrated by all the things I can't do, frustrated by the penalty I pay when I stretch my limits, frustrated when I have to tell Ellie, yet again, that I don't feel well, frustrated when a new symptom develops, frustrated every time a test result is inconclusive.

Fear: I live in fear of pushing too hard and causing a flare that leaves me fully housebound again and unable to do even the small, quiet activities that I do these days. Sometimes it paralyzes me and keeps me from trying to push those boundaries and sometimes it doesn't.

Calm:  I've been sick long enough now that I'm mostly out of crisis mode about my health. I still worry (see fear above), but I know that none of my current symptoms are likely to be life-threatening. There's pain and fatigue, but I know I can survive those, even when the levels get scary high.

Resentment: I resent when I'm forced to waste my limited energy on things like dealing with insurance companies and getting them to pay the way they should. Dealing with health insurance snafoos is annoying for everyone, but when you only have a couple hours a day when you feel well enough to get things done, it sucks to waste it on things like that.

Apathy: I'm down to a single doc (my gastroenterologist) who knew me before my mystery illness took over my life. And with my primary care doc's departure early this year, I no longer have anyone actively trying to figure out what's wrong with me. I find myself not really caring anymore, and not wanting to spend the energy on trying to figure it out or even just starting new relationships with new doctors. Better to save those spoons to spend on my family.

Depression: My moods are pretty stable these days (right, sweetie? :) but when I first realized, a few months after getting sick, that my life wasn't going back to normal anytime soon, I (quite understandably, imho) got depressed. For awhile there, I cried on and off at the drop of a hat. Luckily (er, sort of), I'd had post-partum depression just a couple years earlier and knew which anti-depressant I tolerated and responded to. I'm grateful that I didn't have to do the trial and error with various anti-depressants while I was so sick. And on high doses of Prednisone!

Gratitude: I'm lucky to have a supportive spouse, who does his best to pick up whatever slack he can and doesn't get mad at me for my health problems. There's a reason that traditional marriage vows mention that "in sickness and in health" part -- it is hard on a marriage when a spouse gets sick. Chronic illness is life-changing for both partners, even if one is still healthy, and often leads to divorce. I'm grateful that we're not on that path. Don't get me wrong -- I'm not grateful for my chronic illness, just for having an incredible husband.

Tuesday, April 23, 2013

A Matter of Perspective

The Best I Ever Had
Image by Thomas Hawke via Flickr

For the first time ever, I accompanied Scott & Ellie to an out-of-town skate meet last weekend. It was held in Auburn, roughly a three-hour drive from Portland.

I didn't decide that I was going until the night before. And even then, I was really torn about whether it was a good idea for my health.

Sometimes I feel like I walk a tightrope between desperately wanting to avoid a flare or major setback and wanting to participate in my family's (and especially my daughter's) life as much as possible no matter the cost.

So we left home at 7 a.m. on Friday but made a detour to stop past Scott's office and pick something up that ended up adding an hour to our journey thanks to morning rush hour.

And here's how my schedule went for the weekend, as best I remember:

11:30a-1p: Arrive Auburn, brief stop at skate rink then lunch and checking into our room.
1-6p: Nap while Scott & Ellie went to practice at the rink.
7p: Picked up at hotel to go to dinner with a bunch of skaters.
9p: Bed.

7a: Scott and Ellie head to the rink. I said goodbye and went back to sleep until around 11a.
Noon: Scott & Ellie come back and have a short swim in the hotel pool.
1p: Lunch
2p: We take Ellie to the hotel where the girls are doing hair and makeup for the junior precision team's event Saturday night
3:30p: Back to our hotel because I'm exhausted and the noise/activity level at the other hotel's lobby with 14 girls and at least one parent apiece is exhausting to be around.
4-5p: Nap
5:15: Doors open at the rink and we're right there.
5:30: Opening Ceremonies for the meet (despite competition having started at 6a).
6p: Junior precision teams (ours and another club's) skate. Then we watch the Tiny Tots skate while waiting for the award ceremony. Our girls win first place!
8p: Dinner. Finally!
9:30p: Bed

4:30a: Alarm goes off and I get up to do Ellie's hair and makeup for her 6a figures event. Scott also has two figures events starting at 6a.
5:15a: Free (and quick!) breakfast in the hotel lobby. Rink opens at 5:30a and skaters need to hurry.
5:30a: Scott and Ellie leave for the rink. I head back to bed.
10a: Scott calls and asks if I want to be picked up to be there for Ellie's dance event at 10:45a. I regretfully decline and go back to sleep for another hour.
11a: I get up, get dressed and start packing up all our gear because checkout is at noon. I'm expecting Scott and Ellie back any moment. But they aren't, so I go ahead and check out at noon and wait in the lobby to be picked up with our gear.
1p: Scott picks me up in a grumpy mood because they still hadn't posted results from Ellie's event or had the award ceremony due to computer issues and he's afraid he'll miss it.
1:30p: There's an award ceremony but we don't hear them call Ellie's event. All of a sudden everyone's asking where she is and it turns out she won second place. I chase her down and hurry her onto the rink to get her medal.
1:40p: Lunch!
3-5:30p: Hanging around rink until Scott's dance event at 5:30. Most of the younger girls are melting down because they've been at the rink since 6a and are exhausted.
6p: Ellie and I decide to eat rink food for dinner. Scott can't because he's still in his dance tux and can't risk mess while waiting for the award ceremony. He's won second place!
7p: Hit the road for home, with a quick stop at a McDonald's so Scott can eat something.
10:30p: Home at last!

Do you get as tired as I do just from reading that? And keep in mind that I slept through the bulk of the weekend!

On Sunday, I came to the conclusion that my presence at the skate meet was pointless and actually an annoyance because of the extra trips between hotel and rink that Scott had to make in order to accommodate my needs. And I'd missed three of the five events my family skated, as well as sometimes pulled them away from what they would have chosen to be doing if I weren't there. So what was the point?

Scott, however, came to the opposite conclusion. Without my having told him how I was feeling about the trip, he thanked me for coming along and said it was really good to have me there.

Clearly, it's a matter of perspective. And that's giving me some food for thought.