tag:blogger.com,1999:blog-37496878021386923922024-03-13T11:23:23.003-07:00Sick MommaAvivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.comBlogger524125tag:blogger.com,1999:blog-3749687802138692392.post-49356371785348474522017-10-14T19:40:00.004-07:002017-10-14T19:40:47.545-07:00Ten Years Later<span style="font-family: "verdana" , sans-serif;"><br /></span>
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<tr><td class="tr-caption" style="text-align: center;">Photo by <a href="https://www.flickr.com/photos/jamiesrabbits/5641308012" target="_blank">Jamiesrabbit</a></td></tr>
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<span style="font-family: verdana, sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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, </span><span style="font-family: verdana, sans-serif;">and woke up the next morning unable to get out of bed. It was </span><a href="http://sickmomma.blogspot.com/2007/10/start-of-slippery-slope.html" style="font-family: verdana, sans-serif;" target="_blank">the start of my roller coaster ride with chronic illness</a><span style="font-family: verdana, sans-serif;">. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Now, a decade later, what has changed? In some ways, a lot. In other ways, not so much.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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.)</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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.<br /><br />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? </span><br />
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<span style="font-family: "verdana" , sans-serif;">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.<br /><br /></span></div>
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Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-7285098458065045162014-03-12T07:00:00.000-07:002014-03-12T07:00:03.906-07:00Product Review: My ID Square<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/--IuKXfmcgeY/Ux6V5zb0_kI/AAAAAAABfII/lcHLPl-PwD8/s1600/photo-001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/--IuKXfmcgeY/Ux6V5zb0_kI/AAAAAAABfII/lcHLPl-PwD8/s1600/photo-001.JPG" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>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></td></tr>
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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.<br />
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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.<br />
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The nice folks over at <a href="http://myidsquare.com/" target="_blank">My ID Square</a> 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.<br />
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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.<br />
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On their website, I was able to enter contact info for all my doctors, my medication list, and a list of my primary diagnoses.<br />
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My thoughts, for what they're worth:<br />
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<li>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!</li>
<li>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.)</li>
<li>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. </li>
<li>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. </li>
<li>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. </li>
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If you think you might be interested in buying one of these, go visit <a href="http://myidsquare.com/">MyIDSquare.com</a> and the code SickMomma15 will save you 15 percent through April 15. </div>
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<i>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. </i></div>
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<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com5tag:blogger.com,1999:blog-3749687802138692392.post-39612095187351550532014-02-28T18:04:00.000-08:002014-02-28T20:54:45.958-08:00Why I Blog<i>This post is written in response to a call for submissions from <a href="http://gettingclosertomyself.blogspot.com/" target="_blank">Leslie Rott</a> for a new blog carnival for the <a href="http://restoringqualityoflifeblog.org/category/call-for-submissions/" target="_blank">Partnership for Palliative Care</a>, where she's currently interning.</i><br />
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<tr><td class="tr-caption" style="text-align: center;"><i>My mystery lady -- do you think she knows the answer to my mystery illness? </i></td></tr>
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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 <b>huge</b> impact on my quality of life).<br />
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Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com2tag:blogger.com,1999:blog-3749687802138692392.post-1341880690409142782014-01-24T10:22:00.002-08:002014-01-24T10:22:34.795-08:00Running On Empty<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.flickr.com/photos/laffy4k/185202451/" style="margin-left: auto; margin-right: auto;" title="Running On Empty by laffy4k, on Flickr"><img alt="Running On Empty" src="http://farm1.staticflickr.com/66/185202451_7b1686b9c5_z.jpg?zz=1" height="320" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Running on Empty by Chris Metcalf via flickr</i></td></tr>
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It's been about a million years since I felt like I was full of energy. But lately, I'm really dragging. </div>
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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. <i>(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.)</i></div>
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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. </div>
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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.<br />
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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.<br />
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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!<br />
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<i>TGIF!</i></div>
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Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-2521445077527876472014-01-15T06:00:00.000-08:002014-01-15T23:32:51.350-08:00New Year, Same Old Chronic IllnessI recently got a new <i>(mean!)</i> comment on a blog <a href="http://sickmomma.blogspot.com/2007/12/dental-hygienist-from-hell.html" target="_blank">post</a> I wrote back in December 2007, when my illness was still fairly new and extremely debilitating.<br />
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Before I'd adjusted and gotten used to it, and accepted that my world had shrunk dramatically.<br />
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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.<br />
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Back when I still believed that someday, my life would go back to "normal."<br />
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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 <i>(Remember pinball machines? I'm dating myself!)</i>, constantly reacting to the latest bad news.<br />
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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.<br />
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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.<br />
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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> (I can't believe she's 9 now! How did this happen?)</i> and can understand my limitations while not needing quite so much hands-on care, which means we can actually spend more time together now.<br />
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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" ...)<br />
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I like to focus on my family, our little crafty business <a href="http://fostersbeauties.etsy.com/" target="_blank">Foster's Beauties</a>, my hobbies and my volunteering. I spend way too much time on Facebook and, for that matter, in both paper- and e-books.<br />
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That's life here in 2014. How's your life looking these days?<br />
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Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com1tag:blogger.com,1999:blog-3749687802138692392.post-17566913678963971932013-09-10T21:46:00.001-07:002013-09-12T11:06:04.270-07:00What My Chronic Illness Feels Like<em>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 <a href="http://duncancross.net/" target="_blank">Duncan</a> sent out a <a href="http://duncancross.net/2013/07/what-does-crohns-feel-like-redux/" target="_blank">topic</a> for the September edition of <a href="http://patientsforamoment.blogspot.com/" target="_blank">Patients For A Moment</a> 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. </em><br />
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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?<br />
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But here's how I feel. For today, at least.<br />
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<strong>Chronic Fatigue:</strong> I've written a lot about my intense fatigue over the years. My most <a href="http://sickmomma.blogspot.com/2007/12/clinical-fatigue-vs-being-tired.html" target="_blank">popular post</a> 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. <br />
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<strong>Joint Pain: </strong>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.<br />
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<strong>GI Issues: </strong>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.<br />
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<strong>Tachycardia: </strong>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. <br />
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<strong>Malaise:</strong> 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. <br />
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<strong>Arrhythmia: </strong>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.<br />
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<strong>Frustration:</strong> 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. <br />
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<strong>Fear: </strong>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. <br />
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<strong>Calm:</strong> 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. <br />
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<strong>Resentment</strong>: 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. <br />
<br />
<strong>Apathy: </strong>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 <a href="http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf" target="_blank">spoons</a> to spend on my family.<br />
<br />
<strong>Depression:</strong> My moods are pretty stable these days (<em>right, sweetie?</em> :) but when I first realized, a few months after getting sick, that my life wasn't going back to normal anytime soon, I (<em>quite understandably, imho) </em>got depressed. For awhile there, I cried on and off at the drop of a hat. Luckily (<em>er, sort of), </em>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!<br />
<br />
<strong>Gratitude:</strong> 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 <strong>hard</strong> 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 <strong>not</strong> grateful for my chronic illness, just for having an incredible husband.<br />
<br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com4tag:blogger.com,1999:blog-3749687802138692392.post-10467151476995990572013-04-23T11:23:00.000-07:002013-04-23T11:23:17.067-07:00A Matter of Perspective<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.flickr.com/photos/thomashawk/5160637201/" style="margin-left: auto; margin-right: auto;" title="The Best I Ever Had by Thomas Hawk, on Flickr"><img alt="The Best I Ever Had" height="500" src="http://farm5.staticflickr.com/4087/5160637201_5776fd7f8e.jpg" width="500" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em>Image by Thomas Hawke via Flickr</em></td></tr>
</tbody></table>
<br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
And here's how my schedule went for the weekend, as best I remember:<br />
<br />
<u>Friday</u><br />
11:30a-1p: Arrive Auburn, brief stop at skate rink then lunch and checking into our room.<br />
1-6p: Nap while Scott & Ellie went to practice at the rink.<br />
7p: Picked up at hotel to go to dinner with a bunch of skaters.<br />
9p: Bed.<br />
<br />
<u>Saturday</u><br />
7a: Scott and Ellie head to the rink. I said goodbye and went back to sleep until around 11a.<br />
Noon: Scott & Ellie come back and have a short swim in the hotel pool.<br />
1p: Lunch <br />
2p: We take Ellie to the hotel where the girls are doing hair and makeup for the junior precision team's event Saturday night<br />
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.<br />
4-5p: Nap<br />
5:15: Doors open at the rink and we're right there.<br />
5:30: Opening Ceremonies for the meet (despite competition having started at 6a). <br />
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!<br />
8p: Dinner. Finally!<br />
9:30p: Bed<br />
<br />
<u>Sunday</u><br />
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.<br />
5:15a: Free (and quick!) breakfast in the hotel lobby. Rink opens at 5:30a and skaters need to hurry.<br />
5:30a: Scott and Ellie leave for the rink. I head back to bed.<br />
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.<br />
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.<br />
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.<br />
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.<br />
1:40p: Lunch!<br />
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. <br />
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!<br />
7p: Hit the road for home, with a quick stop at a McDonald's so Scott can eat something. <br />
10:30p: Home at last!<br />
<br />
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!<br />
<br />
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? <br />
<br />
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. <br />
<br />
Clearly, it's a matter of perspective. And that's giving me some food for thought. <br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com5tag:blogger.com,1999:blog-3749687802138692392.post-35571470365732723292013-04-11T23:02:00.000-07:002013-04-11T23:05:43.035-07:00Book Review: In The Kingdom of the Sick by Laurie Edwards<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-IdL_VqCxUFg/UWZEfIfVDjI/AAAAAAAAAb8/ZsBdgM-HJ8w/s1600/In+the+Kingdom+of+the+Sick_HC_cat.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-IdL_VqCxUFg/UWZEfIfVDjI/AAAAAAAAAb8/ZsBdgM-HJ8w/s320/In+the+Kingdom+of+the+Sick_HC_cat.jpg" width="210" /></a></div>
I got a lot of comments when I carried around Laurie Edward's new book, <em>In the Kingdom of the Sick: A Social History of Chronic Illness In America</em> to my various medical appointments earlier this month. Interesting comments. <br />
<br />
"So does that book explain why there are so many people with psychosomatic illnesses these days?" my dentist asked. "There didn't used to be so many people who complain about being tired and having aches and pains all the time, people who say they can't work or lead normal lives."<br />
<br />
And there were other, similar, comments from other people who ought to know better too. (There were also questions and comments from open minded people too. But there were more of the former than I would have anticipated considering the places I was reading the book.)<br />
<br />
Sigh. <br />
<br />
Laurie, a longtime blogger in the chronic illness community at <a href="http://www.laurieedwardswriter.com/blog/" target="_blank">A Chronic Dose</a>, did a lot of research for this book, as evidenced by the ten pages of (single-spaced, small print!) bibliography as well as the informationally dense text. The book has a slightly academic feel to it, especially in the early chapters. But it was so fascinating at the same time that I was never tempted to abandon it. I did have to read it in chunks because it gave me too much to think about and want to respond to. My copy has a thick, pink fringe to it from dozens of Post-It flags I littered the pages with every time I came across something that made me say, "Huh!" or "Wow!" or "Grrrr". (The last was in the many cases reading about historical and current treatment of female patients as unreliable sources of information about symptoms. In fact, I wrote an entire blog post venting about it that I need to re-read and consider actually posting next week. It was pretty much a rant though, so I'm not sure how relevant it is to my readers.)<br />
<br />
As in her first book, <a href="http://sickmomma.blogspot.com/2008/08/book-review-life-disrupted-by-laurie.html" target="_blank"><em>Life Disrupted!,</em></a> Laurie interspersed <strong>In the Kingdom of the Sick</strong> with stories from real people living with chronic illness or treating it, which helps keep the book more accessible to the average reader. I also really appreciate the way she shares bits of her own experiences.<br />
<br />
Below are my somewhat random musings. I swear, I think I could write a book length review/reaction to Laurie's book, but I'll try not to. The summary is this is well written, fascinating book and should be a must-read for anyone who has a chronic illness or has a close friend or family member who does. (And that, essentially, is pretty much everyone, whether they know it or not.)<br />
<br />
**** The title comes from one of my favorite chronic illness quotations from Susan Sontag: "Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdome of the well and the kingdom of the sick. Although we prefer to only use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."<br />
<br />
**** "We do not like being reminded that there are still limits to modern medicine, and that named conditions exist that may not kill us but will not go away. But if we add to this scenario those illnesses that we can't name, ... conditions we can't put under our high-ower microscopes or see on advanced imaging tests, then the fear -- and often distaste -- grows. Perhaps if the symptoms can be explained away by claiming the patient is just lazy, or is not making appropriate lifestayle changes, then blame can replace the other niggling emotion: <em>Maybe if it can happen to him or her, it could happen to me.</em>" -- page 11<br />
<br />
I think the above quote from Laurie's book was behind my dentist's comments. Although she very carefully said she wasn't referring to people like me with "legitimate" health problems, she was critical of her sister's claims to health problems. She believed that if her sister would just eat healthier foods, exercise, stop feeling sorry for herself and be less lazy, the sister would be fine. <br />
<br />
While I know there are undoubtedly some people out there scamming for disability payments as depicted on the Showtime series Shameless, I have yet to meet anyone (online or IRL) who wouldn't greatly prefer to be healthy and able to work or take care of their children. <br />
<br />
**** I love reading historical fiction, but I never knew until reading Laurie's book (p.17) that the practice of blood-letting stemmed from the belief that since women menstruated monthly and (in ancient Greece & Rome) apparently had fewer illnesses that it was a good way to rid the body of disease. Fascinating. <br />
<br />
**** Laurie writes (p.22) that chronic illness didn't become prominent to society until after the advent of vaccines during the first half of the 20th century. Until then, enough people died or were incapacitated by infectious diseases such as polio, measles and smallpox that there wasn't much awareness of those illnesses that don't kill. Fascinating factoid: self-reported illnesses rose by 150 percent from 1930 to 1980, which was, Laurie wrote, "a clear indication that a population that lived longer wasn't necessarily <em>feeling</em> better."<br />
<br />
**** Laurie interviewed a large number of patients, and even when their illnesses and symptoms were far, far different than my own, I still felt like our shared experiences in coping with chronic illness were far more similar than different. And that's an important thing to realize as health care in the U.S. continues to change. Laurie writes about how initially HIV/AIDS patients used to make a point of differentiating between the people who caught it due to their own choices and those who didn't, but once those two groups united to lobby hard for more attention and research, huge strides were made and HIV is (generally) no longer the death sentence that it used to be. I wonder what would happen if the chronic illness community worked together to lobby for our entire group instead of splintering off by diagnosis. <br />
<br />
**** I finally learned the back story for <a href="http://epatientdave.com/" target="_blank">e-Patient Dave</a>! I've been following him <a href="https://twitter.com/ePatientDave" target="_blank">on Twitter</a> for years and seeing him mentioned in all kinds of forums in the chronic illness online community but I never knew how he became famous (at least in those circles). Turns out, he was diagnosed in 2007 with late-stage kidney cancer, a diagnosis that carries a median survival rate of just 24 weeks. He used the Internet to do research and connect with other patients, and brought his doctor reams of research. They came up with a plan, he participated in a clinical trial and overcame virtually insurmountable odds to survive. (He has also written a book, which I plan to check out:<em> Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn From It).</em><br />
<em></em><br />
<em>**** </em>It's somewhat disconcerting to be reading along and suddenly find your own name. :) Laurie interviewed me for her book, and I was pretty sure I didn't end up on the virtual editing room floor, but I never knew when or where my name would pop up. I feared I had rambled nonsensically in answering her questions via email, but she treated me generously and didn't let me look like a fool. Thanks!<br />
<br />
**** Reading the chapter titled A Slight Hysterical Tendancy made me angry. And also triggered memories of times that I hadn't even realized how patronizing my doctors were being. And those date back to well before my current health issues. But that's a <strike>rant</strike> post for another day. In fact, it's already mostly written. <br />
<br />
**** I've long been a fan of <a href="http://duncancross.net/" target="_blank">Duncan Cross</a>, and reading his quotes in Laurie's books just confirmed my opinion of him. He's probably responsible for the largest percentage of my little pink Post-It flags. One of my favorites, which harkens back again to my dentist's disturbing comments about her sister and others: "There is a sizeable minority in this country which believes either explicitly or subconsciously that people deserve what they get. If you're sick, it must be because you did something awful or are an awful person .... Obviously, relatively few people who have chronic illnesses did anything to create those diseases, and even those who did don't deserve the suffering that results."<br />
<br />
**** I was essentially cheering aloud when I read about people who dislike the pressure to keep one's chin up all the time and exude positiveness. I know I've blogged about my resentment of that pressure, but I can't seem to dig it out of the archives right now. Laurie quoted someone who called it the "tyranny of cheerfulness." Another interviewee talked about how people imagine that there's a finish line that people with cancer can cross to win the race and become survivors, thereby "perpetuat[ing] the stereotype of the valiant, effervescent cancer survivor." (p.101) What does that then say about those who "lose the battle" or face recurrences? <br />
<br />
Laurie then writes, "The issues apply to chronic illness in powerful ways. For one, there is obviously no finish line, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so. Without that finish line that denotes survivorship, there is not the same level of cultural awareness of our diseases, no backdrop of success with which outsiders can judge our journey. Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are."<br />
<br />
Exactly. <br />
<br />
**** As I mentioned earlier, I love historical novels. So I was fascinated when Laurie drew a line connecting chronic fatigue syndrome and fibromyalgia to other mysterious illnesses that have occurred throughout history with little or no understanding. And usually written off as some sort of somatic illness, so I guess some things rarely change. :P<br />
<br />
Ok, if I keep going on, you might think you don't need to read this book because I've told you everything. Trust me, you do need to read it. In fact, I think reading it several times is beneficial because you can't possibly absorb all the information with just one read of it. <br />
<br />
------<br />
<em>Full Disclosure: I received an advance copy of the book as an interviewee. I received no compensation, either for sharing my story/opinions with Laurie or for doing this book review. My opinions are my own, although I think anyone with any sense at all would agree with me that this is an excellent book. :-) </em><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com3tag:blogger.com,1999:blog-3749687802138692392.post-50258319132503061752013-03-10T13:17:00.000-07:002013-03-10T13:38:59.345-07:00People Say The Darndest ThingsIt's not just kids who say the darndest things. It seems like everyone does, especially when it comes to people with chronic illnesses. Including those who should know better.<br />
<br />
I have a friend I've known for almost 30 years (eek, that really dates me!) who has <a href="http://en.wikipedia.org/wiki/Crohn%27s_disease" target="_blank">Crohn's disease</a>, an autoimmune disease that attacks the gastrointestinal system. In the past year, the friend has developed an autoimmune form of <a href="http://en.wikipedia.org/wiki/Alopecia_areata" target="_blank">alopecia</a> and has lost all his hair. Everywhere. Including eyebrows, eye lashes, legs, arms, etc.<br />
<br />
I'm mortified to admit that I made a (bad) joke about wishing for just a teensy bit of that for Scott, whom I'd recently been teasing about how the only gray hair he has is the stuff growing out his ears. My friend somberly responded, "Don't wish it on him. I wouldn't wish it on anyone."<br />
<br />
You'd think, after dealing with thoughtless things people say to me for the six years since I became chronically ill, that I'd know better. And I do. But that doesn't always keep me from opening my mouth and inserting my foot. I try to keep that in mind when people say things to me that put my teeth on edge.<br />
<br />
This month's Patients For a Moment blog carnival is all about those things people say that they should know better than to say. Hosted by Leslie over at <a href="http://gettingclosertomyself.blogspot.com/" target="_blank">Getting Closer to Myself</a> and going live on March 15, she wrote a post about it called <a href="http://gettingclosertomyself.blogspot.com/2012/10/shit-tactless-idiots-say-to-sick-people.html" target="_blank">Shit Tactless Idiots Say To Sick People</a>. Leslie has a way with words. :)<br />
<br />
I'm pretty sure medical professionals think they're empathizing when they say things to me like, "You're too young to be this sick!" or "Wow, I've never seen such a thick file on someone under 75 years old!" (Hey, that last one will be going away soon as all the doctor's offices are transitioning to electronic medical files! But I'm sure there will be another equivalent -- maybe about gigabytes of data in an electronic file.)<br />
<br />
I have a friend who telecommutes from coffee shops all over Portland for her job, which is based on the East Coast. She keeps telling me to come meet her for lunch or coffee, which would be appealing, but parking is so limited in the areas she favors. "Oh," she says, "I never have trouble finding parking. I just park up above 20th and walk down to 13th or below." Which is great for her, but not so great for me. I might make it down to the coffee shop, but considering that socializing by itself exhausts me, I fear I wouldn't be able to make it back to my car afterward. I've explained this to the friend multiple times, and I don't know if she just doesn't get it or doesn't want to get it. These days, when she says it, I just respond, "Yeah, that doesn't work for me. I wish it did."<br />
<br />
Most things people say to me are the same things all my chronically ill friends get tired of hearing:<br />
<br />
<ul>
<li>"But you don't look sick!"</li>
<li>"You look great! You must be feeling better!"</li>
<li>"You need to get some exercise. That will give you more energy and make you feel better!"</li>
<li>"Oh, my grandmother has joint pain in her hands/wrists too!"</li>
<li>"Stop sleeping so much and you won't be so tired!"</li>
<li>"Oh, I had the same problem(s) but I started taking xxxxx supplement/herbal remedy/etc and now I feel great! You should try it!" </li>
</ul>
<div>
And so on and so forth. </div>
<div>
<br /></div>
<div>
Most people say these kinds of things either with the best of intentions or simply without thinking about it. </div>
<div>
<br /></div>
<div>
Like Leslie, I do wonder about the medical professionals who complain about things like how hard it is to get blood for me or the "extra" work my being medically complicated causes them. After all, they wouldn't have jobs without patients. And more importantly, it's not like I'm <b>choosing</b> to be difficult or complicated. I'd definitely prefer to be healthy!</div>
<div>
<br /></div>
<div>
What kind of tactless or stupid things do people say to you?<br />
<br />
If you're looking for thoughtful things <b>to</b> say to chronically ill people, here are some links to good suggestions:<br />
<br />
<ul>
<li><a href="http://psychcentral.com/blog/archives/2009/08/21/10-things-to-say-to-a-sick-friend/" target="_blank">Ten things to say to a sick friend</a></li>
<li><a href="http://invisibleillnessweek.com/2009/09/17/how-to-give-an-ill-friend-love-understanding-and-support/" target="_blank">How to give an ill friend love, understanding and support</a></li>
<li><a href="http://www.cnn.com/2012/09/11/health/invisible-chronic-illness/" target="_blank">Talking with someone with chronic illness</a></li>
<li><a href="http://www.restministries.org/invisibleillness/art_whattosay.htm" target="_blank">What to say</a></li>
<li><a href="http://www.mamasick.com/2010/09/things-to-say-and-not-to-say-to-a-sick-person-cheat-sheet/" target="_blank">Things to say and not to say to a sick person: cheat sheet</a></li>
</ul>
</div>
<div>
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<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-40394165895566483252013-02-14T00:45:00.000-08:002013-02-14T00:46:09.226-08:00Oops! I Did It Again!* aka Over-Scheduling For A Sick MommaI guess I took a sick day yesterday. Sort of.<br />
<br />
I didn't mean to, but I guess my body knew what it needed and overruled my brain that had over scheduled me. (Actually, even my brain knew it was a bad idea.)<br />
<br />
It's been a crazy week, and getting crazier every day.<br />
<br />
It started on Sunday when I finally decided that I couldn't keep sending my kid to school in boots that were falling apart. And she's been insisting she wants jeans, after years of telling me she didn't. So we hit Target looking for jeans and boots. And struck out.<br />
<br />
So we went to Sears, where I had to return a dress I'd ordered from Lands' End that didn't fit, and looked there. We found the boots, but again struck out on jeans, and called it a day. An exhausting day.<br />
<br />
We also discovered we had lice. <a href="http://sickmomma.blogspot.com/2013/01/new-year-means-new-beginnings.html" target="_blank">Again</a>. (Have I mentioned recently how awesome it is to have a school-age child?) So that meant that my stay-at-home, recover-from-the-weekend-and-gird-for-the-coming-week Monday was shot because we visited the fabulous ladies at <a href="http://liceknowingyou.com/" target="_blank">Lice Knowing You</a> in Beaverton. Thankfully, we caught it much earlier this time and the bill was far lower than last time around. It didn't help that I couldn't fall back asleep after Scott got up at his usual 5:45 a.m. because my neck itched. So it was a long, exhausting day instead of a recovery day.<br />
<br />
On Tuesday, I had acupuncture (thank goodness!) and then had to pick my kid up from school to take her to a Hebrew tutor. The downside to leaving a Jewish day school is having to figure out how to get your kid a Jewish education when a normal three or four times a week after-school religious school doesn't fit into your schedule. Sigh. The upside is her beloved Hebrew teacher from kindergarten and first grade agreed to tutor her. And Ellie was soooooo happy to see Morah Devorah again.<br />
<br />
So when my alarm went off on Wednesday morning for me to prepare for a visit to my immunologist, apparently my body said, "Uh, uh!" I woke up two hours later, ten minutes before my appointment at his office that's at least 20 minutes away. So I called to see if it would be possible for me to arrive 40 or so minutes late (I had to get dressed! Take meds! Eat something!), but his schedule was booked so they kindly rescheduled me for next week.<br />
<br />
Which meant I got a jammies day at home, which was just what my body needed.<br />
<br />
And that's good, because my week is only going to get crazier because Scott is headed north for a roller-skating competition on Friday morning and won't be back until Monday afternoon/evening. While I'm pretty used to occasional solo weekends, this will be my first solo parenting weekend. (I got my first solo parenting in <a href="http://sickmomma.blogspot.com/2012/08/i-hate-nietzsche.html" target="_blank">last summer</a> when Scott went to Nationals in Lincoln, Nebraska, but that had the benefit of being on weekdays when Ellie spent all day at camp.)<br />
<br />
I feel like I'm almost faking my way as a "normal" soccer mom this week: Out of four days of school, I'll have picked her up three and taken her somewhere. And today, on her first solo school bus ride home, I was waiting out on the driveway when the bus dropped her off. In my jammies, but I was there. :-) It counts, right?<br />
<br />
But although I've managed to keep most of my balls in the air so far, it's clear that I can't maintain this schedule for long. :-/<br />
<br />
I'm just aiming for long enough.<br />
<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/CduA0TULnow?rel=0" width="560"></iframe>
<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com1tag:blogger.com,1999:blog-3749687802138692392.post-71264400886718391222013-02-06T19:52:00.000-08:002013-02-06T19:52:42.501-08:00Chronic Illness Has Its Own LanguageOne of the most overwhelming things when I first got sick was all the medical lingo I had to puzzle through.<br />
<br />
I consider myself fairly well educated, and during my days as an AP reporter, I had experience translating complex jargon (whether medical, scientific or government-ese) into English that the average newspaper reader could understand.<br />
<br />
But when my brain was fuzzy from that onset of illness and the meds treating that illness, I could barely formulate questions much less understand the answers the doctors gave me. And they threw so much at me with tests and diagnoses I'd never heard of.<br />
<br />
Thank goodness for the Internet. It started with <a href="http://labtestsonline.org/" target="_blank">LabTestsOnline</a>, and from there to the <a href="http://www.mayoclinic.com/health-information/" target="_blank">Mayo Clinic</a> website and various other sites online. I picked up the lingo to the point that my mom and my internist started telling me I should go to med school. :)<br />
<br />
I didn't realize quite how much I had learned the language until my first visit with a neuro-muscular neurologist. When he asked me what I understood to be the reason I'd been referred to him, one of the reasons I told him was that my internist thought he might be able to figure out why my <a href="http://en.wikipedia.org/wiki/Anti-ganglioside_antibodies" target="_blank">anti-ganglioside antibodies</a> were abnormal and whether that was to blame for some of my neuropathy issues.<br />
<br />
The fact that I even knew the phrase "anti-ganglioside antibodies" floored him. And when I explained my understanding of what they were and what they did, he asked me if I had a medical background because, he said, he'd never had a patient before who knew those details. (I'm still kind of proud of that!)<br />
<br />
In these days of 10-minute doctor appointments, when even good doctors have so many patients to see every day that they can't keep up with the minutia of every patient's chronic illnesses, it's absolutely crucial for patients to develop some level of medical literacy because we patients have to be advocates for ourselves.<br />
<br />
Despite the electronic medical records that should be linking all my specialists and my internist so they can all be in the loop, I frequently find that reports haven't been sent or that crucial information was left out. I'm constantly asked to provide test results and conclusions/recommendations from one doctor to another. Without my files of lab and other test results, I would have had to repeat tests so different doctors in different health systems could see the results for themselves. (Having a fax machine helps, too!)<br />
<br />
I can't think of a downside to educating myself to be able to understand what's going on with my body and with my various health conditions. And I would not continue to see a doctor who didn't appreciate my efforts to do so. (Early on, I dropped a doctor who told me to stay off the internet and that he would tell me anything I needed to know. Clearly, the man was still living in the 1950s.)<br />
<br />
And educating myself helps me feel like I'm at least a little in control of my health. I might not be able to cure myself or even avert a flare, but at least I can understand what's going on with my health and ask educated questions of my various doctors.<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-39858146534464779342013-01-10T17:19:00.001-08:002013-01-10T17:19:45.138-08:00New Year Means New BeginningsIt's been a rough few months for a multitude of reasons (but luckily mostly not health related).<br />
<br />
We had some school-related drama that kept Ellie home for almost two months before we finally enrolled her in a different school. (It's early days yet, but so far, she seems much happier. And her new teacher seems to be just what she needed.)<br />
<br />
The pneumonia lingered and lingered. When I finally made it to the immunologist last month, the pneumonia had cleared out of my lungs, but my lung function was at just 68 percent. And two nebulizer treatments in his office only brought it up a little bit.<br />
<br />
Then, in just the past few weeks, we dealt with lice (I highly recommend <a href="http://liceknowingyou.com/" target="_blank">Lice Knowing You</a> in Beaverton if you're local and ever need it! It was frighteningly expensive, but worth the money to have it all dealt with at once and have confidence that it was really gone.), a broken furnace, and a mysterious crack in a car's radiator that needed to be replaced.<br />
<br />
So although January isn't my usual time to think of new beginnings, we're definitely ready for a change in our luck and hoping the new year brings it.<br />
<br />
There are definitely some new beginnings ahead, although in some ways it feels more like I'm recycling than any sense of renewal. <br />
<br />
I had my <a href="http://sickmomma.blogspot.com/2012/11/chaneling-mr-bill.html" target="_blank">last appointment</a> with my primary care doc today. Sigh. I'm really going to miss her, even though I totally understand why she's leaving her practice. I dread the thought of starting over with someone new, but c'est la vie. <br />
<br />
I saw my hematologist this week. While it will take a week or two to get the results from checking my <a href="http://www.mayoclinic.com/health/monoclonal-gammopathy/DS00870" target="_blank">MGUS levels</a>, the other tests already came back showing I'm anemic again. Not dangerously, and not even as badly as I was a few years ago before I got iron infusions. But likely headed toward more infusions sometime in the next year.<br />
<br />
My immunologist wants to put me on three new medicines to replace one old medicine because my lung function, which is normally right around 100 percent, is hovering around 84 percent. Which is good in comparison to where it was a month or so ago, but still feels like I'm short of breath.<br />
<br />
So, haven't I been here before? Experimenting with new-to-me medications, looking for the right doctor, anemic and wondering if that's responsible for my increased fatigue levels? <br />
<br />
I guess the more things change, the more they stay the same.<br />
<br />
Wishing you all the best in this new year!<br />
<br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-76896655459645848242012-11-15T15:00:00.000-08:002012-11-15T15:00:55.337-08:00Chaneling Mr. Bill<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">Anyone
remember <a href="http://www.mrbill.com/" target="_blank">Mr. Bill</a> 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!”?</span><br />
<br />
</div>
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<br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">Well,
that’s how I’m feeling right now after visiting my primary care doc this week. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">Because
she’s leaving her job. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">Oh,
nooooooooooooooooooooooooo! (I’m pretty sure people in China are wondering what
that moaning they heard was.)</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">It’s
a good move for her – she’s going to work for <a href="https://healthy.kaiserpermanente.org/html/kaiser/index.shtml" target="_blank"><span style="background-color: white;"><span style="background-attachment: scroll; background-clip: border-box; background-image: none; background-origin: padding-box; background-position: 0% 0%; background-repeat: repeat; background-size: auto auto;">Kaiser</span></span></a> and will earn way more money as well as receiving things like pension
benefits. She’ll be a bit closer to home, too. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">But
what about <b style="mso-bidi-font-weight: normal;">me</b>?!</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">Sigh.
</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">I did
ask if she would help me transition to someone new, either at her clinic or
elsewhere, and she agreed. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">On
the upside, I guess I could look for a doctor with offices with free parking … I
hate paying to park. :)</span><br />
<br />
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">But oh, this was an added bit of stress I really don't need right now. :-( </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com1tag:blogger.com,1999:blog-3749687802138692392.post-34084964376568029442012-11-09T10:06:00.000-08:002012-11-11T23:08:36.470-08:00No Mo' NaBloPoMo (For Me)<!--[if gte mso 9]><xml>
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<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">You
may have noticed that I’m not participating in <a href="http://www.blogher.com/blogher-topics/blogging-social-media/nablopomo" target="_blank">NaBloPoMo</a> (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!</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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!)</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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. </span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">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 <b style="mso-bidi-font-weight: normal;">again</b>. 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
<a href="http://www.mayoclinic.com/health/monoclonal-gammopathy/DS00870" target="_blank">MGUS</a> (monoclonal gammopathy of undetermined significance) levels haven’t
increased yet to the point of needing to do something about them.</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">So,
that’s pretty much what’s going on with me. Except for this little commercial
break:</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana","sans-serif"; font-size: 12.0pt;">Looking for the perfect holiday gift for
someone special? Please check out our online shop, <a href="http://fostersbeauties.etsy.com/" target="_blank">Foster’s Beauties</a>! We have
items for every budget! And if you contact me via <a href="https://www.facebook.com/FostersBeauties" target="_blank">Facebook</a>, I’ll give you a
coupon code to save 10 percent on your purchase. Thanks!</span></i></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-88449615395447454522012-10-22T15:10:00.000-07:002012-10-22T15:10:51.612-07:00Breaking Up Is Hard To DoOh Prednisone, how do I love-hate thee?<br />
<br />
Let me count the ways!<br />
<br />
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.<br />
<br />
2. You make me fat(ter) ... with a bottomless pit of hunger that is never fully satiated but is far too intense to ignore.<br />
<br />
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.)<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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 ...<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com1tag:blogger.com,1999:blog-3749687802138692392.post-4818498789318131902012-10-18T17:47:00.002-07:002012-10-18T17:47:37.052-07:00So Many Blog Posts Not Getting PostedI've been meaning to post. I've even started writing at least a dozen posts that are stuck in my drafts folder here.<br />
<br />
I didn't even get a post out to mark the fifth anniversary (Oct. 14) of my blog. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Anyway, I'm still here, and I hope y'all are too even though I've been MIA for a couple months. :-/<br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-88829890018357390802012-08-20T23:08:00.000-07:002012-08-20T23:08:07.903-07:00No Vacations From Chronic Illness<a href="http://duncancross.net/" target="_blank">Duncan</a>, 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 <a href="http://duncancross.net/2012/08/pfam-how-do-you-roll/" target="_blank">here</a>.<br />
<br />
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.<br />
<br />
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.<br />
<br />
It's hard, but that's life, right? <br />
<br />
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.<br />
<br />
<a href="http://sickmomma.blogspot.com/2010/06/chronic-illness-travel.html" target="_blank">Our trip to Disneyland</a> 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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
<br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-58114712326488461162012-08-06T13:27:00.002-07:002012-08-06T13:27:25.101-07:00I Hate NietzscheI do, I really hate Nietzche.<br />
<br />
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). <br />
<br />
If it's true and not simply a cliche, I'm apparently stronger now. After all, I survived "Girls Week."<br />
<br />
"Girls Week" is what Ellie labeled the week that Scott was at the <a href="http://www2.teamusa.org/USA-Roller-Sports/Figure.aspx" target="_blank">USA Roller Sports</a> 2012 National Figure Championship since we were staying home while he was in Lincoln, Nebraska. (He made his coaches -- and us -- proud!)<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-QFkOhroWAwk/UCAmind3ZfI/AAAAAAAAAXE/P6BqLHpGTXA/s1600/7-30-2012+arrival+at+nationals.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://3.bp.blogspot.com/-QFkOhroWAwk/UCAmind3ZfI/AAAAAAAAAXE/P6BqLHpGTXA/s320/7-30-2012+arrival+at+nationals.JPG" width="320" /></a></div>
<br />
<br />
Ellie went to all-day camp each day, which is probably how I survived. :)<br />
<br />
But oh, my days shrunk.<br />
<br />
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.)<br />
<br />
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!).<br />
<br />
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. <br />
<br />
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? <br />
<br />
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.<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-53215817808575635772012-07-11T16:08:00.002-07:002012-07-11T16:08:46.719-07:00The Stigma of Chronic IllnessThere'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.<br />
<br />
And sometimes even from them.<br />
<br />
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. <br />
<br />
Why is that? <br />
<br />
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. <br />
<br />
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 <a href="https://twitter.com/chronicbabe" target="_blank">Jenni Prokopy</a> of <a href="http://chronicbabe.com/">ChronicBabe.com</a> fame or <a href="https://twitter.com/achronicdose" target="_blank">Laurie Edwards</a> of <a href="http://www.achronicdose.com/" target="_blank">A Chronic Dose</a>, both of whom live their chronic lives out loud on the internet.<br />
<br />
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. :)<br />
<br />
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 <b>couldn't</b> 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.<br />
<br />
There's something <i>intimate</i> about sharing with others the various ways our bodies have broken down and no longer work properly. It means letting people see <a href="http://www.youtube.com/watch?v=YWyCCJ6B2WE" target="_blank">the man (or woman) behind the curtain</a>, with all their human frailties showing. It means letting them see behind the social facade we all keep.<br />
<br />
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? <br />
<br />
This post was inspired by <a href="http://well.blogs.nytimes.com/2012/07/09/keeping-parkinsons-disease-a-secret/" target="_blank">a NYT article</a> 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.<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com11tag:blogger.com,1999:blog-3749687802138692392.post-8832065461974079672012-06-29T12:24:00.001-07:002012-06-29T12:24:59.360-07:00Sick Momma's Theory of RelativityI 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!)<br />
<br />
I recently visited a new rheumatologist, and while I did get some good information from her, I was struck more by <a href="http://www.theportlandclinic.com/sites/default/files/rheumatology_health_history_form_0.pdf" target="_blank">the paperwork</a> that I had to fill out prior to my appointment.<br />
<br />
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: <i>Most of the time, I function ...</i><br />
<br />
My initial impulse was to circle #3:<i> Okay</i>.<br />
<i> </i><br />
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 <b>need</b> to do, even if I can't approach doing as much as I <b>want</b> to do.<br />
<br />
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.<br />
<br />
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. <b> </b><br />
<br />
<b>Everything is relative</b>.<br />
<br />
Compared to how bad things get when I'm very flared, I am functioning <i>okay</i>. Compared to how little I could do after my hospitalization back in July 2007, I'm functioning <i><b>very</b> well</i>.<br />
<br />
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 <i>very poorly</i> and <i>poorly</i>. Compared to how some of my friends in the chronic illness community, I'm functioning <i>well</i>. <br />
<br />
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. <i><br /></i><br />
<i> </i><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com4tag:blogger.com,1999:blog-3749687802138692392.post-56587887140842550952012-06-01T12:55:00.004-07:002012-07-11T16:09:36.431-07:00Sunny Days Are Here AgainSo, 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.<br />
<br />
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 <b>good</b>. Better than good. Approaching great.<br />
<br />
And then I slide back downhill to my "usual."<br />
<br />
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.)<br />
<br />
I can focus again to read -- which is good, because my library hold on an e-copy of <a href="http://www.amazon.com/gp/product/055357342X/ref=as_li_ss_tl?ie=UTF8&tag=sicmom-20&linkCode=as2&camp=1789&creative=390957&creativeASIN=055357342X">A Storm of Swords (A Song of Ice and Fire)</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=sicmom-20&l=as2&o=1&a=055357342X" style="border: none !important; margin: 0px !important;" width="1" />, book three in the series better known as the Game of Thrones just came up for me this week. :)<br />
<br />
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.)<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-9966949743125538682012-05-15T20:23:00.002-07:002012-05-15T20:23:27.571-07:00Nothing But Heartaches*<i>(*Title of a song by The Supremes)</i><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-YNoIszFe7Ms/T7MdVm7-ZTI/AAAAAAAAAS4/lLuc03YlVRs/s1600/freeimage-4109607.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="125" src="http://2.bp.blogspot.com/-YNoIszFe7Ms/T7MdVm7-ZTI/AAAAAAAAAS4/lLuc03YlVRs/s200/freeimage-4109607.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">© Oculo | <a href="http://www.stockfreeimages.com/">Stock Free Images</a> & <a href="http://www.dreamstime.com/">Dreamstime Stock Photos</a></td></tr>
</tbody></table>
<br />
<br />
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.<br />
<br />
So they squeezed me in today, and we talked about whether the heart medicine (<a href="http://www.drugs.com/digoxin.html" target="_blank">digoxin</a>) 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."<br />
<br />
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).<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
So it turns out to be a good thing that I hadn't cancelled my original appointment slot. :)<br />
<br />
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. <br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com0tag:blogger.com,1999:blog-3749687802138692392.post-40856176275500657102012-04-29T11:58:00.001-07:002012-04-29T12:04:51.998-07:00Too Much Day: A Conversation With My HusbandThis 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.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-ICjYgDTGGOU/T52LAAju-7I/AAAAAAAAASk/_6ULVtVqjNQ/s1600/P1080737.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-ICjYgDTGGOU/T52LAAju-7I/AAAAAAAAASk/_6ULVtVqjNQ/s320/P1080737.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellie wasn't in the fashion show, but she says she wants to try out for it next year!</td></tr>
</tbody></table>
<br />
Yep, that was the entirety of my day. And it was <b>beyond exhausting</b>.<br />
<br />
At bedtime, when Scott and I were doing our evening ablutions, we had the following conversation:<br />
<br />
Too much day, I said as I sat on the side of the bathtub to take my meds.<br />
<br />
How come it's always too much day and never too little day, he asked with a smile.<br />
<br />
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.<br />
<br />
No, he said, not really. Have you seen your eyes?<br />
<br />
I leaned forward and peered in the mirror. Wow, I said, do they really look as bad as they do to me?<br />
<br />
You look like you have two shiners, he said. <br />
<br />
Some days, I guess I wear my fatigue on my face. Or at least under my eyes.<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com3tag:blogger.com,1999:blog-3749687802138692392.post-61536529964322656232012-04-27T11:53:00.001-07:002012-04-27T11:53:32.766-07:00The Power of VentingI'm a big believer in the power of venting. Or whining, if you'd prefer to label it such. :)<br />
<br />
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.<br />
<br />
Two memories of that horrible place (which went out of business a few years later!):<br />
<br />
---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.<br />
<br />
---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 <b>no</b> relationship." <br />
<br />
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.<br />
<br />
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! :)<div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com2tag:blogger.com,1999:blog-3749687802138692392.post-1412199352968470652012-04-26T23:20:00.000-07:002012-04-26T23:20:20.068-07:00Here 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.<br />
<br />
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.<br />
<br />
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. :-(<br />
<br />
Here's the thing, though -- I've wondered if it's actually a flare or if it's side effects from the <a href="http://www.rxlist.com/lanoxin-tablets-drug.htm" target="_blank">digoxin</a> 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.<br />
<br />
Well, so far, I've had a <b>slight</b> 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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
Ah well, life goes on.<br />
<br />
To end on a happier note, here's a photo of Ellie from the skate competition:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://ellianna.smugmug.com/Ellianna/auburn-skate-meet-4-22-2012/i-pj4ptgJ/0/XL/P1080603-XL.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="http://ellianna.smugmug.com/Ellianna/auburn-skate-meet-4-22-2012/i-pj4ptgJ/0/XL/P1080603-XL.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That's Ellie front and center. The three girls are waiting for their cues to start. </td></tr>
</tbody></table>
<br />
Thanks for listening/reading. <br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">^_______
Please visit <a href="http://fostersbeauties.etsy.com/" target="_blank">our Etsy store</a>! Our crafty blog is <a href="http://fostersbeauties.blogspot.com/"target="_black">Foster's Beauties</a> and I'd love if you followed us there, too! Thanks!</div>Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.com2