tag:blogger.com,1999:blog-13670408496833208392024-02-19T07:51:22.074-05:00UII - Understanding Invisible Illnesses"UII" Can Spread Hope!
Since this is all about spreading awareness and sharing information, please feel free to share this blog, post a link, or repost something (as long as you include a link back to here for your readers). Thanks!Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-1367040849683320839.post-27217158626845224182015-09-05T23:19:00.000-04:002015-09-05T23:19:07.444-04:00Baby Bud Round UpNew post at On A Tightrope: Baby Bud Round Up!! <a href="http://tightropeact.blogspot.com/2015/09/baby-bud-round-up.html">http://tightropeact.blogspot.com/2015/09/baby-bud-round-up.html</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgugqXyjJPvZ_Wo_CUn85eUdHK5N3ayyMTh5FIZfZ9C7JBJ8L7ZAyQAn3R7DJxFNzGll33iK-dm-BHzAafEpSKXj6mqZOGpxzvyc77-Ei0NLlzCJFnA_9u33rCtRaEqUkALW7L8wG9qGsY/s1600/20150615_120554.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgugqXyjJPvZ_Wo_CUn85eUdHK5N3ayyMTh5FIZfZ9C7JBJ8L7ZAyQAn3R7DJxFNzGll33iK-dm-BHzAafEpSKXj6mqZOGpxzvyc77-Ei0NLlzCJFnA_9u33rCtRaEqUkALW7L8wG9qGsY/s200/20150615_120554.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguPuD06598ohcihMY-xqYyxJWSRK3U6saPG5tBhHmqNEk626y3pgreRMvxYMfXfkdLnowPyfE-qZ1l5kG8Gjyrg-AK3l0UcDKbvxPmmlQRJttvyjUXu_M_wQYeQ427QkZkMjLL_DcGSys/s1600/20150615_203256.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguPuD06598ohcihMY-xqYyxJWSRK3U6saPG5tBhHmqNEk626y3pgreRMvxYMfXfkdLnowPyfE-qZ1l5kG8Gjyrg-AK3l0UcDKbvxPmmlQRJttvyjUXu_M_wQYeQ427QkZkMjLL_DcGSys/s200/20150615_203256.jpg" width="150" /></a></div>
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This blog is set up that when I put up a post, it is automatically fed to Twitter and several Facebook destinations through a program called "NetworkedBlogs". However, while you can still sign up to follow blogs through this service, their syndication services have been transferred to another program which charges a fee. As an existing syndication blog, My UII Blog was grandfathered but I was unable to apply the same service to On A Tightrope".<br />
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I'm not about to pay for this service when I can manually share the link to new posts on Twitter and Facebook...but it's even easier for me to post a link to the new post on here and let the existing syndication process pull it :) <br />
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So, please check out my latest post about my infertility journey at <a href="http://tightropeact.blogspot.com/2015/09/baby-bud-round-up.html" target="_blank">On A Tightrope</a>! And if you're so inclined to share the post, please be sure to link to that page directly. Thank you!Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-74176641971052556512015-06-14T21:52:00.000-04:002015-06-14T21:54:07.445-04:00One Little, Two Little, Three Little Follicles...<div style="text-align: center;">
I fear I'm becoming a produce stand.</div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small; text-align: start;">That's right, I'm basically walking around with two little bunches of grapes in my pelvis.</span></td></tr>
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Today is Treatment Day 10, and I thought we would all enjoy a mid-stimulation check in.</div>
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I've been encouraging the growth of my ovarian follicles with injectable hormones for a week and a half. My drug protocol is actually a little light, as I only have to do injections once each day (happy dance). My regimen started with two medications to encourage many follicles to grow and a few days ago we added a third which prevents me from ovulating too soon. Most days this past week I've headed down to my doctor's office before work (51 miles round trip - the things we do for quality healthcare) for monitoring consisting of blood draws to check hormone levels and transvaginal ultrasounds to measure and count my follicles, which I call "potential baby bud roll-call". This means I've been stuck 32 times so far - 12 times for Follistim, 10 times for low-dose HCG, 4 times for Ganirelix, and 6 times for blood draws. </div>
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I am happy to report that at this point, things are going quite well :) Yes, that's right, this little Sjoggie actually has something going right! These moments are few and far between so when I get one, I like to celebrate by high-fiving myself. But that's besides the point.</div>
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What do I mean "things are going right", you ask? Good question! Here are some things that are on target or even better than average at this point:</div>
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<li>I'm developing a delightful number of follicles - one of the clinicians told me she sees on average about a dozen follicles total for a patient, and I have 10-12 on each ovary right now. They won't all yield a mature egg, but in this case more is basically better, and I don't have so many as to pose any significantly increased risk of OHSS (ovarian hyperstimulation syndrome).</li>
<li>My follicles are generally growing at a consistent rate - sometimes a couple overachievers will get plump very quickly, leaving the rest to play catch up trying to grow mature eggs, but mine have mostly grown at around the same pace which is great because it means it's easier to tell when we should trigger to maximize results.</li>
<li>My uterine lining is on target - I'm not doing a fresh transfer so this isn't particularly important right now, but I am relieved to know that my lining is thickening to a good level. This will be important when we do transfer in a few months, because you need a plush lining to give a little embryo or embryette a good chance of implanting happily.</li>
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At this morning's visit, my potential baby buds were measuring around 17mm (give or take, there's a range of course), which means we're getting close to retrieval. </div>
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In addition to these objective ways of seeing that the cycle is going well, I am also happy (if a bit shocked) to report that I'm generally feeling pretty solid. I'm only slightly uncomfortable from the feeling of my plumped up ovaries, which do resemble small bunches of grapes. For me, it's this general sensation like full kidneys, and I'm more aware of it during the movements to sit down or stand up. Of course, it's pretty likely I'll feel increasingly uncomfortable in the next few days but so far, so good!</div>
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I have had one problem crop up in all of this. The day after my first round of shots, I had a full blown migraine. Never having had one before, I didn't know what was going on but after talking to the doctor and reviewing all the symptoms that occurred, that's clearly what it was. It started with a visual aura - I describe it as being like when you look at a camera flash, except the perimeter of the "blur" almost looked like tinsel, sparkly and irregular. The "blur" began to expand and before it was over (about 20 minutes or so) it did obscure a good section of my field of vision. While this was going on, the headache hit (I have a history of cluster or "suicide" headaches so this wasn't the worst part to me, the aura scared me the most), and eventually I had some nausea. These "sudden onset migraines" are not uncommon with all the hormones and medications, but no one warned me about them either. On the upside, except for a lingering headache the next day I only had one more migraine begin a few days later, without aura, and taking an excedrin when I felt it begin did help keep it from progressing. Again, I'm not out of the woods yet but I am hoping that it was more of an adjustment issue and the worst is behind me in this respect.</div>
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So what happens next? Another excellent question!</div>
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Each day that I go in, the office calls me a few hours later once the labs come back to tell me if there are any changes to my medicine protocol (there haven't been so far, which I think is a nice indication that my doctors did a good job figure out where to start, but for the record tweaks are absolutely normal because no two people respond exactly the same way). One of these days that call will also tell me to take my trigger shot that night. 36 hours later, I'll go under IV sedation for retrieval. The clinicians (and I) suspect they'll tell me trigger tomorrow (for Wednesday retrieval) or the next day (for - you got it - Thursday retrieval). The day between the trigger shot and when we go egg hunting I get a short reprieve with no more shots. That will be nice, considering my belly is starting to look like one of those tomato pincushions everyone's grandmother had after it's been stabbed a few hundred too many times. And did I mention Ganirelix burns for a little after it's injected?</div>
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<tr><td class="tr-caption" style="text-align: center;">Granny's pincushion or my abdomen?</td></tr>
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This is where we're at in the IVF leg of our infertility journey. The day we have egg retrieval (and incidentally, every time we discuss that I feel like a giant chicken on a farm) we will find out how many follicles were drained and how many mature eggs were actually retrieved. They'll inject each one with one of my husband's sperm overnight and the next day we'll know how many successfully fertilized, then we begin the highly distracting phase of waiting to see how many grow to blastocyst stage over the following 5-7 days. Better buckle up, kids, we're just getting started!</div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com1tag:blogger.com,1999:blog-1367040849683320839.post-84693756430900030612015-06-05T23:42:00.000-04:002015-06-05T23:42:33.915-04:00Get It TogetherToday's the big day (well, the first of several big days) - tonight I start the stimulation drugs. These injectables will hopefully encourage many follicles on my ovaries to develop mature eggs for retrieval in roughly a week and a half.<br />
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<i><u>Fun Fact:</u></i><br />
Apparently in a "normal" ovulation cycle, many follicles are ready to develop but due to the level of chemicals produced by the body, only one or two will reach maturity. The other follicles that started to develop are 'lost' anyway. With IVF, enough hormones are given to encourage many more of those follicles to develop - which is why IVF does not cause a woman to "use up" her eggs any faster than her body would have on it's own! Therefore, IVF will not cause early menopause or shorten a woman's childbearing years. Pretty cool!<br />
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But returning to the topic at hand...<br />
My full arsenal of meds arrived the other day from the specialty pharmacy. To be fair, some of these meds are for use when we do a transfer (more on that another day) but even so, if I'm being totally honest, getting this package was a little overwhelming even to a seasoned sickie like me.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-_CBpgK3iFjifK6tw3JLXR6zJa0Z5C_BtIOQrq5VXZynvwTeZwAJlem5IlrjkRE7f8_Zijx9D_92bqKn4juHfZRpfVxY8UJvV-X6QbYW-rBthmMDnrQaP9KanHMM7uQMYtlRfjZVnXBI/s1600/Stim+meds.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="476" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-_CBpgK3iFjifK6tw3JLXR6zJa0Z5C_BtIOQrq5VXZynvwTeZwAJlem5IlrjkRE7f8_Zijx9D_92bqKn4juHfZRpfVxY8UJvV-X6QbYW-rBthmMDnrQaP9KanHMM7uQMYtlRfjZVnXBI/s640/Stim+meds.jpg" width="640" /></a></div>
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Let me remind you that I'm only taking doses a fraction of the quantity that women usually take in IVF. On one hand, I have a few stats actually in my favor, which indicate I should be a good responder (produce a good number of eggs). In addition, due to my PCOS I'm actually at increased risk for <a href="http://www.nlm.nih.gov/medlineplus/ency/article/007294.htm" target="_blank">OHSS - Ovarian Hyperstimulation Syndrome</a>. Therefore, my doctor and I decided to go with a reduced dosage protocol which is awesome because it also helps address my concerns over the physical strain IVF could place on my already over-taxed system. Women usually take their meds twice a day, but I'm only taking once daily doses.<br />
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It's important to understand that the protocol for an IVF cycle isn't set in stone. You're given instructions for dosing to start out, but beginning a few days in you go for daily monitoring (bloodwork and ultrasound) and they will adjust things as you go to maximize results.<br />
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To begin my cycle, I'm taking two injectable medications every evening - Follistim and low-dose HCG. My dear, highly skilled nurse of a husband was, of course, working this evening so I had to give myself the shots right out of the gate. First, I got my supplies together:<br />
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<tr><td class="tr-caption" style="text-align: center;">(See what I did there? "Get It Together"? Oh come on, that's clever.)</td></tr>
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Follistim is injected using a dial-a-dose pen, which is rather convenient and didn't cause me too much stress. You know, relatively speaking. The low-dose HCG was another story. This is old school stuff. Using what I understand to be the kind of needle used for traditional insulin injections, I have to manually draw down the dose I need from a glass vial, just like every TV show I've ever seen, then stick a legit NEEDLE INTO MY FLESH, and with a "slow and steady motion" press in the plunger. Dear Lord. <br />
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<tr><td class="tr-caption" style="text-align: center;">(Sorry it's blurry, my hand was shaking a bit trying to hold the camera while remember to BREATHE WITH A NEEDLE STUCK IN MY STOMACH.)</td></tr>
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I have blood drawn all the time, no problem - I watch the blood spurt into the vial. I've given my mother injections of her diabetes medicine, not an issue. As you know I recently got a tattoo, didn't bat an eye. And yet it would seem I do have a bit of a concern with needles. At least, needles containing a liquid that I have to force into my flesh. And these are small needles given in my abdomen. I can't wait for the progesterone shots to start with a transfer - IM (intramuscular) injections given in the backside with 2 inch needles.<br />
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Between you and me? I don't want to do this. I don't want it. I don't want to give myself injections, to worry about checking for blood in the needle in case I hit a vein, to have pinprick marks all over, to risk major complications like OHSS. Of course, I'm going to do it anyway, because I want a child. I said it before, "<a href="http://myuiiblog.blogspot.com/2012/04/i-didnt-like-alternative.html" target="_blank">I don't like the alternative</a>", so I'll cry and pray and probably yell a little, and I'll get myself together and continue to do it. But I really don't want to.Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com1tag:blogger.com,1999:blog-1367040849683320839.post-40590207818955317762015-05-22T16:25:00.000-04:002015-05-22T16:25:05.753-04:00Let's Get Real<i>Warning: This post will contain a no-holds-barred description of my recent appointment at my fertility clinic. While I promise no graphic pictures, I cannot promise that descriptions of certain events won't be a bit blunt. Reality can be shocking, funny - and more than a little ridiculous!</i><br />
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I attend infertility support group meetings with an inspiring group of women, and it struck me as a little funny when the conversation on several occasions turned to the role we often assume as educators. In other words, I found myself in the midst of a troop of health activists who use their experiences with an invisible battle to educate people around them, begin to remove the stigma, and let other people with these hidden challenges know they are not alone. Funny how life works, isn't it?<br />
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In our self-assigned role as awareness activists, we are finding some joy and purpose in the chance to share what this journey is really like - both the good and the grotesque - and when possible to do so with humor and hope. So I want to share some of my experiences with you. I'm sure the things I describe will be quite familiar to more of you than we'd like to admit, and for others it will expose you to the world where <a href="http://www.resolve.org/about/fast-facts-about-fertility.html" target="_blank">1 in 8 couples</a> will find themselves for a time.<br />
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<tr><td class="tr-caption" style="text-align: center;">Generally not a fan of seeing all the equipment laid out...maybe that's just me.</td></tr>
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Every doctor / clinic will do things a little differently, but there are many tests and procedures commonly performed in the fertility community. The other day I had the <strike>misfortune</strike> opportunity to experience two I hadn't been through before: a mock transfer and a saline sono.<br />
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The mock transfer was performed first I was instructed to drink 32 oz of water one hour before my appointment to ensure a full bladder (insert panicked "are you serious" face here, because that's what I made when I got these instructions). It seems for this test they use a long catheter through the cervix as if they were placing an embryo guided by an abdominal ultrasound, and they need your bladder to be full so they can distinguish it from your uterus. Not being a fan of any test that involves a speculum, my primary concern was how I could relax one set of sphincters to allow the speculum while keeping another set engaged to prevent a urinary blowout on the table. <i>I promised you an honest recount and a brutally honest one you shall have, people.</i> This was the test I dreaded more, and to be honest it wasn't nearly as bad as I had anticipated. Perhaps the suggestion I read online was true, that focusing on not peeing during the procedure helped distract me from the activities themselves. I'm not looking a gift horse in the mouth, especially since this was a test-run for a real transfer so I will obviously have to go through this again. I do have a theory, though, that this test is really to see if you're prepared for all the bladder pressure you'd face during pregnancy because holding a full bladder while having things inserted vaginally AND someone applying external pressure with an ultrasound wand was a bit tricky.<br />
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Then came the saline sono.<br />
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<tr><td class="tr-caption" style="text-align: center;">Say hello to the transvaginal ultrasound. While the tests I'm describing might be more relevant for more advanced ART (assisted reproductive therapies), the transvaginal ultrasound is pretty common right from the first few infertility tests. You get used to it quickly. And yes, they use condoms as sheaths - hey, why reinvent the wheel, right?</td></tr>
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For this test, after getting to relieve myself (THANK GOD), I re-positioned on the exam table and they brought back everyone's favorite gynecological tool, the speculum. After inserting a different catheter with a balloon attached to the end, the speculum was removed so that saline could be gently pumped into my uterus, expanding it for a better view. They then used a transvaginal ultrasound (because, as the NP commented, there clearly isn't enough stuff going on in that region) to view the uterus and look for any physical / structural issues. To keep the catheter in place and as a frame of reference, they inflate the little balloon at the end...and ladies (I assume most gentlemen have passed out by now) that is when the pain hit. It was a very specific spot, I could point with my finger to exactly where it hurt, and it felt vaguely like someone driving an ice pick through my abdomen several inches south of my belly button. This will vary a lot person-to-person but for me this was clearly the worst part of the visit. My husband was present with me and poor boy almost lost his hand for me squeezing so hard. You can watch the ultrasound images as the test is being performed and they'll happily describe what you're seeing. This is usually something I do and definitely something I recommend - not only do you become more educated about your health, body, and treatment but it's also distracting - but this time I couldn't even open my eyes long enough. Apparently they did see a small "blip", a white mark, which could be a small adhesion, a piece of tissue that just wasn't flushed out after my last period, or most likely, a small polyp. Most women get these from time to time, and it's easy enough to deal with, but we needed the doctor to review the pictures and weigh in. After the exam was over and they had all the images they needed, they removed everything and cautioned me that I would feel some of the saline drain out - yet another glamorous moment in my muck toward motherhood.<br />
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To be fair, I should qualify my description of the experience a bit: I did not scream or cry, and I wouldn't even describe this as the most painful experience of my life. Also, once the procedure was over the pain subsided fairly quickly (yes I had taken ibuprofen prior to the appointment as suggested and yes, I took a little more afterward). My biggest issue was that I had quite a bit of adrenaline flowing through my system between the pain and my anxiety about the whole visit, and I started shaking. The NP and the medical assistant were cool about everything, they had me stay lying down for a bit after we finished, took my blood pressure, and got me some water. It took a couple minutes but eventually the shaking subsided. That's when the MA commented that my color was returning and after she stepped out again my husband informed me I had blanched to an unnatural shade of Clorox white even for my usual pasty-assed self. While sitting up now sipping water, I asked when exactly I went so pale and he answered, "when they inflated the balloon". I guess that struck me as funny because I laughed...and when my abdominals contracted it forced out some of the remaining saline. Before I could stop myself I turned to him and blurted "YOU MADE ME SQUIRT"! I must say, I hadn't seen him laugh that hard all day.<br />
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And that was my evening of IVF work-up tests. I told you - shocking, funny, and more than a little ridiculous!</div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-20706212493852125732015-05-15T15:47:00.001-04:002015-05-15T15:48:09.382-04:00There's How Many Ways to Do This?<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB0eCEEYkp3IaO72s_XCQpqZzYvUvBJ8Pu_1hIOYiCYuO2-FWSG-xdsq-nQJQ5uoqzLK6A8k0MbJWBH6PB17I3K2KlOYHRYxMXHl-8Sjj2U8ZVBrbwE4itGkHkBLvzpM5UDMp-fnZDZgU/s1600/ICSI.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB0eCEEYkp3IaO72s_XCQpqZzYvUvBJ8Pu_1hIOYiCYuO2-FWSG-xdsq-nQJQ5uoqzLK6A8k0MbJWBH6PB17I3K2KlOYHRYxMXHl-8Sjj2U8ZVBrbwE4itGkHkBLvzpM5UDMp-fnZDZgU/s400/ICSI.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image of ICSI found <a href="http://ivf.org/treatments/advanced-ivf-techniques/icsi/" target="_blank">here</a>.</td></tr>
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Let's take a poll, shall we?<br />
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Raise your hand if you know someone who has struggled with infertility.<br />
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<i>(If you actually have your hand up, good - it helps when you play along</i><b>:)</b><i>)</i><br />
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Keep your hand up if you know someone who went through infertility treatments of any kind.<br />
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How about anyone who's been through IVF?<br />
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<i>(I'm guessing a few hands have gone down but several are still up...let's keep going.)</i><br />
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Keep your hand in the air if that person you know who did IVF had a baby from the treatment.<br />
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<i>(You're such good sports! You can put your hands down.)</i><br />
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If I were the betting type, I'd have money on the chance that almost every hand that was up for "I know someone who did IVF" was still up for "they had a baby". Is that because IVF always works? HELL no. In fact, <a href="http://www.resolve.org/family-building-options/ivf-art/what-are-my-chances-of-success-with-ivf.html" target="_blank">most women who go through IVF have only a 20-35% chance of success in a given cycle - anything over 40% is considered terrific</a>. No, it's because in our society, we don't talk about IVF that doesn't work, let alone the things involved in the IVF process. Unless the person doing IVF was you, a sibling, or your absolutely closest friend, I'd be surprised if you even know they were doing it until the baby was at least visibly on his or her way. I'd bet you have no idea how many rounds that couple may have failed before having a successful transfer and pregnancy. It's likely not your fault, they just didn't feel comfortable telling everyone. But we all know I am not encumbered by such social norms :D<br />
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I am just beginning my journey through IVFland. This week marks two years my husband and I have been TTC (trying to conceive), and we've been through quite a bit of testing, medications, surgery, and several different types of treatments. We've done the classic Clomid, tried IUI. We did, one time, get pregnant but as you know the baby had a trisomy (third copy of a chromosome) and resulted in a miscarriage right before Christmas. We finally took a step back after that to consider if we wanted to continue treatments, and explored the adoption scenario. After checking out three agencies, we determined that adoption may be in our future but right now we are better prepared to try some more treatments.<br />
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However, we also decided we were not satisfied with the fertility specialist we had been seeing and realized it was time for a second opinion and a new approach. Fortunately, through the infertility support group I joined, we were aware of a few local alternatives and one in particular which seemed to have a very passionate following, and who offered a free 2nd opinion consultation option! We took our records from the three previous doctors, went through our entire medical histories, discussed our concerns, and sat down with the new doctor. I'll dedicate another post to why I'm liking this new place so much, but suffice it to say she has the approach we need not only to treatment but also to patient care. Her advice is try a "mini-stimulation" cycle of IVF which uses a significantly lower quantity of medications than traditional IVF, as my tests indicate I'm likely to be a good responder. This is important to us with all my medical issues, as we are concerned about what the process could do to my body and overall health.<br />
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And so here we are, going through the steps to get ready for our first IVF cycle. Oh, and by the way, the terms "IVF cycle" itself is confusing, so let's break it down:<br />
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<li>The first phase of IVF is egg retrieval. This is where they stimulate the woman's ovaries to produce a higher number of eggs than are usually developed during a natural ovulation cycle. When ultrasounds and blood tests show the follicles are mature, a needle is inserted through the wall of the vagina (while under anesthesia) to draw out the liquid in each follicle which should contain the eggs. </li>
<li>The eggs are then fertilized (this can be with the male partner's sperm or donor sperm, and the sample may be provided the same day or in advance and frozen). This can be done old school with many sperm in a petri dish or via ICSI (Intra-Cytoplasmic Sperm Injection) where one sperm is selected and injected into the egg. My clinic performs ICSI.</li>
<li>The fertilized eggs are then incubated for a period of 3 - 7 days (this depends on your doctor, personal preferences, specific medical scenarios, etc). With my clinic they usually grow for 5 days. It is important to note that it's unlikely all embryos will make it the full length of time.</li>
<li>At this point one of two things will happen. You can have a fresh transfer which involves placing an embryo in your uterus with a catheter on that 5 day mark (my clinic will only transfer one at a time, and I'm ok with that - with all my medical issues we don't need the added risks of carrying twins). This will depend on how retrieval went along with your health at the time. There are several things that could preclude a fresh transfer, including your own preferences.</li>
<li>If you don't have a fresh transfer, all embryos will be frozen. If you do a fresh transfer, any remaining embryos will be frozen. Oh, and you have another decision to make - PGS.</li>
<li>PGS is Preimplantation Genetic Screening, which is a NON-DESTRUCTIVE test that can be performed on embryos (and which even the best insurances don't cover). Prior to freezing, a small biopsy is taken from the outer ring of cells which will eventually form the placenta (thereby leaving the cells that become the baby itself untouched). The sample is then examined to determine if the embryo is chromosomally normal. The test will determine if the embryo has the right number of chromosomes, which chromosomes may be missing, and which may have an extra copy. It will also identify the sex of the embryo but you can ask your doctor not to tell you that. So yes, this test will tell you if your baby has Down Syndrome or another chromosomal condition - whether compatible with life or not. It will NOT tell you traits such as eye color, genetic risk factors, and so on. How you use this information is a personal choice.</li>
<li>Once you have a fresh or frozen embryo transfer, you enter the infamous "Two Week Wait" where time seems to stand still and your stress level reaches new heights. There's a lot of discussion around how to survive the time you wait to find out if the embryo implanted, and most tips center around how to keep your mind busy. A lot of women stock pile books or binge-watch TV series. Part of the challenge is that most forms of exercise (a stress-relief tool used by so many people) will be off limits during this time adding both to your physical discomfort and your anxiety. During this time, it's common to continue a hormone protocol, depending on your specific case.</li>
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These are just the basic steps. When someone says they are having an IVF cycle, it could mean that they're having a transfer, or a whole new egg retrieval being done. And this process involves so many decisions and choices I never, ever contemplated before being in this boat. What do I need / want to do to prepare my eggs for retrieval? This could mean medication, supplements, acupuncture (which is incidentally something my peers SWEAR by), clean eating or other special diets, specific exercises, massage, even special heat compresses. The medications you might take during stimulation, while preparing for a transfer, or following a transfer will mostly be directed by your doctor but you do have some input, again including diets, supplements (ALWAYS clear them with your doctor - "natural" doesn't mean it won't interact with meds), exercise (if permitted), and so on. It's overwhelming.</div>
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So this is where I am. I am preparing for my first egg retrieval which for me means going through several more tests since I am new to this clinic, and panicking because I'm well within the 90 day window prior to retrieval when studies indicate you can most impact the quality of your developing follicles and I have NO IDEA what if anything I should be doing differently. Next week I will meet with my doctor again to review everything and hopefully get the green light for the retrieval, after which my husband and I will have to go for informational sessions and to be trained on administering the injections at home to encourage egg development. I'm attending support groups twice a month (one led by a therapist and one peer-led group organized under the awesome national organization <a href="http://www.resolve.org/" target="_blank">RESOLVE</a>), and we are also in touch between meetings as we're all in a high-activity state right now.</div>
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So, if your'e still with me after all this discussion, I'll ask you one last question - <b>how many of you had any idea what's involved in IVF?</b></div>
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Because I sure as hell didn't.</div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com2tag:blogger.com,1999:blog-1367040849683320839.post-15948638971737440342015-05-10T09:17:00.002-04:002015-05-10T09:17:44.358-04:00Non-Traditional Mothers' DayHappy Mother's Day, from the bottom of my heart.<br />
To my mom, to the moms in my family, to the moms I'm friends with.<br />
You know how blessed you are to have your kids, and that's one of the reasons in itself that your kids are blessed to have you.<br />
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Please post pictures of your handmade, glitter-covered cards, 'check in' from restaurants you're at, and tell the world how much better your life is for having your kids.<br />
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Please understand why I won't be hitting "like".<br />
Why I may not even read the posts at all; may scroll right past the pictures.<br />
Understand that it is how I have to take care of myself right now, and not my way of making you feel guilty or casting a shadow on your celebration.<br />
If I didn't think those things were worth celebrating, I wouldn't be working so hard to have them in my own life.<br />
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Understand that I am already living much as a mother: getting up at crazy hours to get to daily appointments, stressing over how to balance work obligations with my family priorities, and thinking every day about my someday - children's welfare (not to mention existence). I even endure physical aspects, but instead of labor pains and a strained back mine are injections, anesthesia, surgery, vaginal ultrasounds (which are not exactly as "non - invasive" to me as a woman as medicine wants to label them), body - wide side effects of hormones, and exercise limitations.<br />
And yes, not unlike children themselves, infertility can totally screw up your sex life in ways you may have never imagined. For people like me, it is not in any way "the best part of making a baby".<br />
<br />
Understand that in my journey, I am still hopeful.<br />
If I wasn't, I wouldn't be continuing to go through the things I do.<br />
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Understand also that for many women, THAT BABY WILL NEVER BE.<br />
IVF doesn't always work, even adoption isn't always possible or may be an option some people do not want to take.<br />
Understand that childfree is a choice for many, a default for some, and that I am quite reasonable in my fears of it happening to me.<br />
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Understand that telling us "it'll happen someday" is not helpful; "I love you" is; "I'm sorry" is; "I pray for your happiness" is.<br />
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And if you are so inclined, share my post as I have shared the posts from my friends who are also non - traditional moms on Facebook today. Use the social media network of your choice.<br />
<br />
My post is complete with pictures for my lost baby- the ultrasound of my daughter Grace when she lived so briefly within my womb, and where she now lives represented by a mustard seed tattoo and eternally in my heart.<br />
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<br />Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-74153389760653370822015-04-07T19:40:00.000-04:002015-04-07T19:40:23.644-04:002015 Sjogren's Walkabout<div class="gmail_default" style="background-color: white; color: #222222; font-family: georgia, serif;">
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<tr><td class="tr-caption" style="text-align: center;">Team UII at the Philly SSF Walkabout</td></tr>
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At last it's here, it's finally SPRING!</div>
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What fun and joy will this season bring?</div>
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There's flowers and sunshine, and lots to do.</div>
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But the most fun of all will be at the Zoo!</div>
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So check us out and join our team;</div>
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The funds you help raise will support our dream -</div>
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To live a life where we more than cope,</div>
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Where we laugh and love and are filled with hope!</div>
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<b><u>What:</u></b> <b><i>11th Annual Walkabout</i></b> for the Sjogren's Syndrome Foundation</div>
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<i>(This is my fifth year on the committee for this event!)</i></div>
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<u><b>When:</b></u> Saturday, <b><i>May 2</i></b> - Registration opens at 8:30; step off is at 10:00AM</div>
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<b><u>Where:</u></b> <b style="font-style: italic;">Philadelphia Zoo </b>(for those in the Philly area - if you aren't nearby, please consider donating, and check the Sjogren's website to see if there's an event in your area!)</div>
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<b><u>How:</u> </b>Donations can be made online or by contacting me. Qualify for <i><b>FREE ENTRY</b></i> to the Zoo for the entire day by simply raising at least $10 per family member (ages 3 and up)! </div>
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For details on earning FREE entry and how to make donations, visit my team page at here: </div>
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<a href="http://events.sjogrens.org/site/TR/Events/General?team_id=1000&pg=team&fr_id=1040" style="color: #1155cc;" target="_blank"><span style="font-size: medium;">Team UII - Understanding Invisible Illnesses</span></a>! </div>
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<i>Please remember to invite your friends and family! You can share this post via email, Facebook, Twitter, Linked-In, Google+, etc. Or, sign up for the walk and send your personal page around!</i></div>
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<b><u>What is Sjogren's?</u></b></div>
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Sjogren's Syndrome (pronounced "SHOW-grins") is the second most common autoimmune disease in the US, though it is dramatically misunderstood. In this disease, our bodies attack themselves, especially moisture producing glands and connective tissue. While the most common symptoms include dry eyes, dry mouth, fatigue, and chronic pain, Sjogren's can affect every system in the body. It is chronic and progressive, meaning there is no cure and it will usually get worse over time.</div>
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But the SSF (Sjogren's Syndrome Foundation) is working to change all that. The Foundation has recently cut the average diagnosis time from 7 years in half, and is continuing to work on making that even shorter. They also:</div>
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<ul style="font-family: georgia, serif;">
<li style="margin-left: 15px;">Provide resources to patients, family, and healthcare providers,</li>
<li style="margin-left: 15px;">Host an annual Patient Conference,</li>
<li style="margin-left: 15px;">Publish materials,</li>
<li style="margin-left: 15px;">Raise awareness among the healthcare community to drive interest in this pervasive disease, and </li>
<li style="margin-left: 15px;">Fund research into effective treatments and possible cures!</li>
</ul>
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The Philadelphia Walkabout is the Foundations largest fundraising event in the country!</div>
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<b><u>Sjogren's By the Numbers:</u></b></div>
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<ul>
<li style="margin-left: 15px;"><span style="font-family: georgia, serif;">An estimated 4 MILLION Americans have Sjogren's</span></li>
<li style="margin-left: 15px;"><span style="font-family: georgia, serif;">9 out of 10 patients are women (though both men and women can develop the disease)</span></li>
<li style="margin-left: 15px;"><span style="font-family: georgia, serif;">Sjogren's patients are at a 44X greater risk of developing Lymphoma</span></li>
<li style="margin-left: 15px;"><span style="font-family: georgia, serif;">Sjogren's patients need an average of 50 TIMES more dental work</span></li>
<li style="margin-left: 15px;"><span style="font-family: georgia, serif;">The average age at diagnosis is between 40 and 50 years of age (but it can occur at any age - I was diagnosed at 15 with symptoms beginning at 2 years of age)</span></li>
</ul>
<div>
<span style="font-family: georgia, serif;">Learn more about Sjogren's and the SSF at <a href="http://www.sjogrens.org/" style="color: #1155cc;" target="_blank">www.sjogrens.org</a>. </span></div>
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Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-86652597531430289732015-01-30T14:53:00.000-05:002015-01-30T14:57:01.791-05:00Our Littlest GiftAs I understand it, "grace" is a gift from God which allows us to do and experience and understand things we couldn't do, experience, or understand on our own. Our lives without grace may lack direction or leave us unfulfilled - my guess is because we don't understand what God wants of us. When we know which way to turn next, it is because of grace. We tend to think of grace as a happy, soothing feeling, but I'm not sure that's always the case. I think sometimes grace hitches a ride with more painful experiences. The kind after which we reflect and say "if not for that, I might never have gotten to this". I think it is in feeling the glow that embraces us when we are with "this" that we can appreciate the grace we've been given.<br />
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So in a nutshell, I think grace is a gift from God - received many times over, mind you - which gives us peace and direction and helps guide us toward the things we should be doing and experiencing in our lives. When the chromosomal test results on my miscarried baby came back telling us it was a girl, it just seems right that we decided to name our daughter Grace.<br />
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Ephesians 2:8 sums it up quite nicely for me: <i>For by grace you were saved through faith, and this is not from you; it is the gift of God</i>. Our littlest gift sent us on the path toward adoption now, already knowing that whoever the child is we bring into our family at this time, it will be because of Grace.Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com1tag:blogger.com,1999:blog-1367040849683320839.post-13779956456834237782015-01-15T22:50:00.000-05:002015-01-15T22:51:26.568-05:00What's It All About, Anyway<div>
We have a lot of expectations in (and of) this life. </div>
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For many of us, those expectations include having kids and building a family. Obviously, this has been a topic of great importance to me lately, for at least the last 20 months of trying to conceive at a minimum. At the outset, I had some pretty basic expectations of the stages involved, and what choices or options or components there might be with each one.</div>
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<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv9mPauQzon1u2eZmIYIuI2bJE7KK2sO4bTjNoYomBHBA_GkOQtS7Qd64xJ_yojtnIuIzEmISGaJIjNE_jER2jTorlmYCsbmVycJ-ujaBVF5BJCHm5Lk_-L8KQoISxuzp2p1V80pfUei0/s1600/Usual+path.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv9mPauQzon1u2eZmIYIuI2bJE7KK2sO4bTjNoYomBHBA_GkOQtS7Qd64xJ_yojtnIuIzEmISGaJIjNE_jER2jTorlmYCsbmVycJ-ujaBVF5BJCHm5Lk_-L8KQoISxuzp2p1V80pfUei0/s1600/Usual+path.JPG" height="184" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is your first glimpse into how my brain works, isn't it. Yes, I think in flowcharts, lists, and graphics - so what ;)</td></tr>
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That was pretty much how I thought it went for most people, for quite a while. It was my impression growing up and through the first several months of trying. But maybe a year ago, I began to learn that a whole lot of people - including us - have to consider a few more things.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLlriLWqSOMqs1H2rqSbXWfa7ZQJmn2foBBLEW0pXNbk5l8M08sDlOiTld3F_sAclueUDfe-HxTZwV0XMrHIzBQk_kzfhetpp9Hq7Ca0Z0qtIMWtbAaG9mYUWRalxsx7AQkDBkkSm3kso/s1600/When+it+doesn't%2Bwork.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLlriLWqSOMqs1H2rqSbXWfa7ZQJmn2foBBLEW0pXNbk5l8M08sDlOiTld3F_sAclueUDfe-HxTZwV0XMrHIzBQk_kzfhetpp9Hq7Ca0Z0qtIMWtbAaG9mYUWRalxsx7AQkDBkkSm3kso/s1600/When+it+doesn't%2Bwork.JPG" height="194" width="640" /></a></div>
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Oh yes, for those of you who may not have had the opportunity to explore things at this level, it's just a bundle of fun. I'd like to add that the monitoring accompanies just about all parts of this process, unless you're fortunate enough to sustain the pregnancy and graduate to abdominal ultrasounds.</div>
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But what happens when it doesn't work?</div>
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This is when the questions start that have no answers, such as what method is most likely to be successful? Or the most painful question, why? And one of the hardest - what does moving on mean for me?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnpcBg6e3UDhZux0yVoGe58MhBYuRTk7asuL4aIycIsPDF5RpQioy0I43Gs1nQ7f04Ye0Qg2jdbe_UYeGC-9kbcvdUX-NMF2wCjMVm7geTlzAVPPZWF6zE-23-kevhil0WUeVoO_EJejg/s1600/Now+what.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnpcBg6e3UDhZux0yVoGe58MhBYuRTk7asuL4aIycIsPDF5RpQioy0I43Gs1nQ7f04Ye0Qg2jdbe_UYeGC-9kbcvdUX-NMF2wCjMVm7geTlzAVPPZWF6zE-23-kevhil0WUeVoO_EJejg/s1600/Now+what.JPG" height="208" width="640" /></a></div>
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It's within this last box that I've been living. What do I do now? Do I keep trying? If so, which methods are open to me, and which can I handle? What if I run out of options? What if I simply can't handle this same path anymore?</div>
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And most recently we've confronted the question of what's it all about anyway? What is it we're really after and why? It is these answers that are setting us on our next leg of the journey.</div>
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Shawn and I are seriously looking into adoption. But as we discussed today, it's not because we've exhausted everything else, that we think this is the "only way" to have a family. And we don't care for it when people act like that's why we'd make this decision. We are genuinely excited at the prospect. Bringing someone into our family through this process is going to be a great, if trying, experience and this new aspect of how our family will unfold gets us going. The way we see it, I have other options. I can continue the treatments I've been doing, for instance. But the other day I had a realization. All along I've wondered if I "should" have kids, knowing what I could pass on, and if that's a reason at a bigger-picture level for why it isn't working. What if the issue isn't so much - or entirely - what I could pass on but what the process might do to me? Once you get into the heavier treatments, you put your body through a LOT. Otherwise healthy women struggle with the chemical manipulation, physical restrictions, and side effects of the treatments on their bodies. You have to trick your body into doing things, even into thinking it's pregnant so it won't reject the baby. As someone with my kind of complex history, how will my body endure these experiences? If I do manage to successfully "fake it 'till I make it", I'm almost guaranteed to have a major flare afterward, and as we all know we can't predict the lasting effects of these experiences. What could this do to me <i>as a mother</i>? And what would it do to Shawn as a father if he had to care for a new baby and me at the same time? What if this is really about my ability to raise my children?</div>
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What's it all about, anyway? Why do we want to have kids? Because we want to be parents. Once in a moment of guilt I told Shawn I feared how he might feel if I was the reason he couldn't have kids and he pointed out that he didn't marry me just to HAVE kids, he married me because he wanted to be parents with me; it was so we could RAISE kids. <b><u>For us, it's all about the family we'll have and not so much about how we have it.</u></b> </div>
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For as old as I generally feel and while it's true my body is not a typical 28 year old body, when it comes to the fertility world I am still young. We could get five years down the line, decide we still want to try for a biological child, and have time to work with. Adopting in no way closes any doors at all for how we'll continue to build our family. But continuing with treatments right now no longer seems right. We're not closing any doors - we feel that if I were to get pregnant naturally at this point it would indicate to us that my body would equipped to handle it and we'd welcome that - but we aren't going to try to force it for a while. But it is still the right time for us to begin raising kids, so we're turning to the adoption world, and couldn't be more excited.</div>
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<i>This is an incredibly personal decision, and I absolutely expect that you will each have your own opinions and answer for what it's all about to you. I completely respect your decisions and know I can count on you to respect ours.</i></div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-12009304563238988882015-01-01T20:49:00.002-05:002015-01-01T20:53:23.841-05:00Embrace, Cuddle, Squeeze, Hold<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfziTcP72BoHfZEersvlfhHFaxTjerEXlVGEN3g6v007AXO4gL53wkz1URArzju-UfU597J6dop5skodP9lLkln8awdZcglMj6K2PbO7QWo_LRJkGTMOQwexZEk1h1IPVIwKaB7rH3tF8/s1600/i_need_hug_.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfziTcP72BoHfZEersvlfhHFaxTjerEXlVGEN3g6v007AXO4gL53wkz1URArzju-UfU597J6dop5skodP9lLkln8awdZcglMj6K2PbO7QWo_LRJkGTMOQwexZEk1h1IPVIwKaB7rH3tF8/s1600/i_need_hug_.jpg" height="320" width="260" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at that face! Found <a href="https://forums.warframe.com/index.php?/topic/198517-de-do-you-need-a-hug/" target="_blank">here</a>.</td></tr>
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I'm a hugger. Always have been, always will be, and the older I get the more I appreciate this about myself. I just never "got" kissing, especially in non-romantic way. And no my parents didn't "kiss me" all that much that I can recall but they did sometimes, they certainly kissed each other in front of me, and I was very, very loved so I don't think it stems from some childhood issue. I just prefer hugs.<br />
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I remember when I was getting to know my now-husband's family (all 1,000 of them, or at least it feels like that). Most of them are huggers, too, like his mom's family. But his step-father's family, they're cheek kissers. I didn't take to that too quickly. I had to work very hard over many years at consciously staying calm for the kiss-greetings and especially the kisses goodbye. Eventually I got used to it and now it doesn't cause me stress, but I'd still just rather have a good hug.<br />
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So I asked myself, "why hugs? What's so great about a hug? Why develop such a strong preference?" This led to a few observations:<br />
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<ol>
<li>When we hug, we show the other person we support them. Physically, we actually do support them a little bit. Ever topple over or stumble from a hug? It's because the people engaged in a hug are throwing each other a little off balance and then holding the other person up. When you hug, you are literally helping support the other person.</li>
<li>When we hug, we get support. Same deal, going the other way. In my opinion, this is why the "hugs" we exchange with people we don't really like (you know, there's always that relative you don't really want to see but have to be nice to kind of thing) aren't full bodied, two-armed hugs. They're usually side hugs and arm pats. Because we don't believe we will be supported (and perhaps, don't want to support them either). In a real hug, the other person helps hold you up.</li>
<li>When we hug, we let ourselves go. Ever start to hug someone then burst into tears? When you're that close, heart-to-heart really, it's hard to have barriers or facades. That's how it should be. </li>
</ol>
<a href="http://en.wikipedia.org/wiki/Virginia_Satir" target="_blank">Virginia Satir</a>, author and social worker, said "we need four hugs a day for survival. We need eight hugs a day for maintenance. We need twelve hugs a day for growth". What a wise lady.<br />
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So next time you give a hug, go ahead and indulge. Close your eyes, hold on just a split second longer than you have to. Take a full breath in and let it out before letting go. Remember you're hugging this person because they mean something to you, and "tell" then that with your hug.<br />
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I just love hugs. And I'm apparently not the only one: enjoy the <a href="http://www.saatchisynergize.co.za/blog/top-ten-cutest-hugs-of-all-time/" target="_blank">Top Ten Cutest Hugs of All Time</a>!Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com1tag:blogger.com,1999:blog-1367040849683320839.post-83308111578276996452014-12-21T10:43:00.000-05:002015-01-15T22:52:22.692-05:00Meat Loaf and I Lay Down the LawI know I haven't posted in what feels like forever. I pretty much stopped posting in the spring of 2013. That's when two things happened - I switched jobs, leaving KPMG where I had been for close to 4 years, and I start trying to have a baby. Let me summarize for you:<br />
~I worked for the place I went after KPMG for 10 months then switched jobs again - I found something in my field and close to home and was very happy to make the change.<br />
~Shawn graduated college and began working as a nurse.<br />
~I was diagnosed (over time and 3 doctors) with PCOS, Endometriosis, and damaged "fingers" on my fallopian tubes. I had surgery, take new medicines (which helped me drop 40 pounds), am learning all about the "joys" of fertility treatments, and just this week had a miscarriage.<br />
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To be fair, I can't tell you if I'm back for a while or if this will be a one-off post. I just can't commit to anything one way or another right now, and I know you get that. But my recent experiences have brought a post out of me that I simply NEED to write today, so here I am.<br />
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I'm not sure how often I can say I've turned to Meat Loaf for inspiration, but I've hit on pot, Mater from Cars, and Ewwy Gooey the Worm before so why not. Nothing's off limits on this blog, right?<br />
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In the "golden age" of music that was the 1990s, we were graced - and sometimes assaulted - by many novel artists including Michael Lee Aday, or <a href="http://en.wikipedia.org/wiki/Meat_Loaf" target="_blank">Meat Loaf</a>, whose first single to hit number one on the Billboard Hot 100 chart was "<a href="http://en.wikipedia.org/wiki/I%27d_Do_Anything_for_Love_%28But_I_Won%27t_Do_That%29" target="_blank">I'd Do Anything For Love (But I Won't Do That)</a>". Today this is was my inspiration. Infertility and miscarriage are hard topics, and I don't even know what to say let alone what other people should say. But I do know some things that just shouldn't be said at all.<br />
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<i>You can tell me anything you want,</i><br />
<i>That you've been there too or that you've got my back,</i><br />
<i>Yes you can tell me anything you want,</i><br />
<i>But just don't say that.</i><br />
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I'm sorry to take the negative route with "don'ts" but sometimes you just have to.<br />
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Please, whatever you do, just don't say:<br />
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<i><b>(For infertility)</b></i><br />
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<ul>
<li><b><u>You'll be pregnant in no time.</u></b></li>
<ul>
<li>Oh good, you have that crystal ball I've been looking for! Oh wait, that's right, you don't. You have NO WAY of knowing if this is true, and while it seems benign on the face, it can be caustic to a person working through infertility. In my case, this riled me to no end because I knew my body, I knew my medical history, and I knew it just isn't usually in the cards for me to have an easy time doing anything. I knew in my heart of hearts it was going to be something of a struggle, and this platitude can't be said without being patronizing. Additionally, if someone has been dealing with infertility for a while already, this is just plain old stupid.</li>
</ul>
<li><b><u>Just relax.</u></b></li>
<ul>
<li>You can encourage me to redirect my thoughts so I don't become consumed, you can even remind me it won't help to get worked up. But we're talking about having a baby, the biggest thing that will likely ever happen to any one of us, and it SHOULD be a big deal. You really want to be my friend through this? Ask me to do something with you that will take my mind off of it. Your actions will do far more to help me "relax" than anything you might say. Not in the area? Give me a call or send me something to read. Schedule a time with me where we'll watch a movie at the same time and discuss it. But don't use the "R-word".</li>
</ul>
<li><b><u>If it's God's plan, it will happen.</u></b></li>
<ul>
<li>Here's one that toes the line a little. Yes it's all in God's hands and I believe that (though be respectful if you're dealing with someone who doesn't - this isn't the time to bring them to God) but this one uses the shortest scary word there is: if. I just don't want to acknowledge that there's an 'if' about this. Believe me, in the back of my mind I know it's true, but I don't need you bringing it forward.</li>
</ul>
<li><b><u>Your child needs a sibling!</u></b></li>
<ul>
<li>WHY would you say this? This is directed toward the person who has a child already. They're dealing with infertility (or could be miscarriage too), the last thing they need on top of the stress and anxiety and inherent guilt is your added guilt. Do you think they don't know that their child is continuing to grow up while they're working on another kid? And furthermore, whether they give birth to another baby, adopt a child, or raise theirs as an only child, what business is it of yours to say anything? Just do not add your two cents unless explicitly asked. Period. The same goes for telling someone without kids that time's ticking or their parents would love to be grandparents. Just don't.</li>
</ul>
</ul>
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<i><b>(For miscarriages)</b></i></div>
<ul>
<li><b><u>At least you know you can get pregnant.</u></b></li>
<ul>
<li>Where do I start with this one? A) personally, no I do not know I can get pregnant again. Every medical roadblock I had from the beginning is still there. This statement is incredibly dismissive of my experiences and my fears. B) even without my medical history, no woman can be sure she'll conceive. C) this does NOTHING to diminish the hurt of losing a baby already conceived. If your five year old was hit by a drunk driver, God forbid, would you be soothed to know you were capable of conceiving and giving birth? Absolutely not.</li>
</ul>
<li><b><u>You'll be pregnant again in no time.</u></b></li>
<ul>
<li>See above. In addition, this ignores the possibility the I may need time to grieve and compose myself before trying again - or even making the decision of whether to try.</li>
</ul>
<li><b><u>It's for the best.</u></b></li>
<ul>
<li>Are you kidding me? Moving on.</li>
</ul>
<li><b><u>There's always adoption.</u></b></li>
<ul>
<li>This one is only a "don't" for timing. This is true, and many many people will take this option (whether or not they keep trying for a biological baby as well). I also commend you for letting me know you'll be supportive if I take the adoption route. But knowing I could remarry wouldn't make me feel better about losing my husband; knowing I can still have children in this way doesn't make me feel better about the baby I don't have anymore.</li>
</ul>
<li><b><u>At least you were only a few weeks along.</u></b></li>
<ul>
<li>Since Toby from <a href="http://en.wikipedia.org/wiki/The_West_Wing" target="_blank">The West Wing</a> gave voice to the words in my head, I'll quote him: "Pregnancy is a binary state. You either are pregnant or you're not". I was pregnant. A day, a week, or 8 months, I was pregnant and now I'm not. And I'll go you one better. This wasn't a positive home pregnancy test followed by a period, I had weeks of positive blood tests and several ultrasounds. I saw the baby's heart beat. </li>
</ul>
</ul>
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These are the "do not, under any circumstances" items. In my opinion, there's also a "tread lightly" list - things that might go over well or might cause a meltdown. If you want to say one of these things, consider how well you know the person, maybe how long it's been since the miscarriage (if that's the case), etc.</div>
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<ul>
<li><b><u>God has a plan.</u></b></li>
<ul>
<li>Leave out the "if" discussed above and any superfluous preachiness (such as "and His plan will be so great it will heal this hurt"), and this one can work. It will probably be best received by someone who feels a spiritual connection already but might be ok for other people if, again, you leave the preaching behind. This can also be worked well for someone who's feeling guilt, to remind them that they aren't fully in control of this, God is, and He does in fact have a plan even if we don't understand it yet. However this probably shouldn't be the first thing out of your mouth.</li>
</ul>
<li><b><u>I think it will work out for you to be a mother, but I know this sucks right now.</u></b></li>
<ul>
<li>For the times you want to be the voice of hope without incurring a knee-jerk reaction, this one's pretty good. It gets your point across - "it'll be ok" - while respecting that the here and now is horrible. It also subtly tells me it's ok to be hopeful even while grieving which is a surprisingly confusing thought to someone going through a miscarriage.</li>
</ul>
<li><b><u>Do you want to talk about it?</u></b></li>
<ul>
<li>Personally, I usually respond well when people ask me questions. It helps me process, organize my own thoughts, and most of the time that's how I come up with my own plans. And if I don't feel like talking about it, I'll just nicely tell you that (ask me again at your own risk, though). But some people won't appreciate specific questions, so you may want to outright ask them if it's a good time to talk about it or not. Or offer "do you want a distraction right now or do you need to process". Basically asking before doing is probably good.</li>
</ul>
</ul>
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It occurs to me that in almost every case, the reason these things shouldn't be said is because they are dismissive. People need their thoughts, fears, feelings, hopes, and concerns validated. Even if a specific fear is unsubstantiated (which is many times a matter of opinion), you can provide someone with facts about the topic without brushing off the fact they are afraid. Hell most of the time if a fear really is unfounded, we know that, but we fear it anyway. Telling us to simply not be afraid makes us feel alone, stupid, and still scared.</div>
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So what can you say? I've been thinking about this too. Again this is really hard, and I'm definitely not going to suggest there's any specific thing you SHOULD say, but there are some things that I felt worked well. But be thoughtful - even more than with the "don'ts" and "tread lightlys" above, the "dos" can be extremely subjective so know the person you're talking to.</div>
<div>
<ul>
<li><b><u>I'm praying for you.</u></b></li>
<ul>
<li>You're not asking me to do anything, you're simply telling me you're doing this for me. I like that. Also IMO, it doesn't matter what the person's beliefs are for this one, because you're doing the praying. Even if I for some reason didn't believe it would work, no harm done, right?</li>
</ul>
<li><b><u>Can I pray with you?</u></b></li>
<ul>
<li>IF you know enough about the person's spiritual life, you'll know if this is a good idea. But please be prepared to do the verbal praying, don't expect me to say anything except maybe amen. And if I've already lashed out about why God "did this", maybe skip this one for now.</li>
</ul>
<li><b><u>I've been there too.</u></b></li>
<ul>
<li>For me, I'm already aware a lot of my friends have been through miscarriages (though seemingly few of them have had trouble conceiving like me, but that's another story). I also knew posting about mine would bring out more stories, which it did. But it seems most women don't know people have been through this, and certainly don't know who around them has. You probably don't want to then launch into a directive of "how to cope" but using the first person you can share your story - "I was completely numb about it for a week; I gave myself two months of not even trying afterward; I broke every plate in the house and passed out from crying". Good or bad, your reaction was real and it will help me feel more sane for whatever I'm feeling. BUT, please do NOT say something like "I had two miscarriages but now I have my kids and everything's great". I'm not at "everything's great" yet, so stick with something more moderate like "you get through it, please know you can talk to me if you want".</li>
</ul>
<li><b><u>Let me know if you would like any resources.</u></b></li>
<ul>
<li>Many people in my world have resources at the ready - my boss suggested a book other women she knows recommended for miscarriage, for example. Support groups, websites (BE SURE to proof them first to make sure they have the tone you want your friend to see), books, personal connections to someone else who's been there. If you don't happen to have a rolodex of resources handy that's fine, some quick Googling or Facebook networking will work wonders, and someone in my shoes might appreciate not having to do the digging themselves to find support. I guarantee (sad as it is) that someone you know had a miscarriage - if you can find that person they will almost always agree to talk to your other friend. Just don't reveal your friend's identify even if they've "gone public" themselves - no one wants to be broadcast on the web.</li>
</ul>
<li><b><u>There's nothing wrong with you for feeling like that.</u></b></li>
<ul>
<li>Whatever I'm feeling, whatever I'm doing to grieve or cope, tell me it's not wrong. If we're talking about this, I'm almost guaranteed to say something about feeling like it's bad that I'm running errands or that I don't want to try again or that I want to try again right away or something. I'm going to think I'm doing something that's night right or at least looks not right. Tell me I'm fine. Even if you don't understand it, go out on that limb and reassure me I'm not a bad person for it. </li>
</ul>
</ul>
<div>
Don't exclude your friend - keep inviting me to showers and first birthdays - but give me an easy out if I'm not up to going. Sometimes I need to avoid the subject but I also want you to know I'm still your friend and these are the things going on in your life. So give me the option without the guilt if I say no. Give me a hug. Offer to help me if you can - offer to drop off food, take me to an appointment, drive me home. Be specific so I don't feel like I'm asking too much, or so I can say no thank you. Care about my spouse too. Let us know you realize we're both hurting. We're having enough trouble supporting ourselves and trying to be there for each other, so we can use whatever support you can provide.</div>
</div>
<div>
<br /></div>
<div>
And thank you for reading. Because honestly the BEST thing you can do for me right now is to avoid making me hurt more.</div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-75836829374914469162014-06-16T20:21:00.003-04:002014-06-16T20:22:31.811-04:00Mother, May I?As I scan the baker's dozen posts I have in draft, spanning probably a year or more of writing attempts, I think it's time to accept that the days of my more prolific blogging (if I can put it that way) are likely behind me. Even though it's been far longer since my last posts, I only recently acknowledged that this clearly wasn't the temporary burnout lull I wanted it to be. <br />
<br />
Hang on, don't get ahead of me here - I'm not saying I'm done altogether. Trust me, I'd wax at least a bit more poetic and certain conjure up more valuable sentiments if this were my last post. This isn't The End, but I think it's time to accept it is a transition point. Or more precisely, that we passed through this transition some time ago but stubbornly refused to flip over the map and keep going. It's time now.<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFBEMuyD56Hsreec7z790zo76VvX5ExB9yAGohZ-mayX5NwwZySE4RjfHFAmrAhYzmIU26xKXKFbdxE8_bY8ELo2USwD0bqB0wDKVd0x7ksw05sUCtlq_ZIu7ADQZeT9qjbViv3mI-n7U/s1600/Permission-based-marketing-granted-Image-284x202.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFBEMuyD56Hsreec7z790zo76VvX5ExB9yAGohZ-mayX5NwwZySE4RjfHFAmrAhYzmIU26xKXKFbdxE8_bY8ELo2USwD0bqB0wDKVd0x7ksw05sUCtlq_ZIu7ADQZeT9qjbViv3mI-n7U/s1600/Permission-based-marketing-granted-Image-284x202.jpg" height="227" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Baller pic found <a href="http://www.marketingyourpurpose.com/wp-content/uploads/2013/08/Permission-based-marketing-granted-Image-284x202.jpg" target="_blank">here</a>.</td></tr>
</tbody></table>
In my advanced age (these late-20's years are a doozie, people) I've made the move from permission-seeker to permission-granter; my mother isn't responsible for me anymore, I am. I grant myself permission to focus my energies on aspects of my life that need more of me right now. I've always liked my jobs, but I'm finally working in my industry (not-for-profit healthcare) and in a position to put all the skills and ideas I've developed into play. A new diagnosis of PCOS is also consuming many of my resources - I have so much to learn as well as figure out by trial-and-error, and many plans to reshape. And who knew that having a whole house (not to mention an insanely fertile (read, overgrown) yard trying to reclaim any cleared area) would take so much time compared to that required by a two room apartment! <br />
<br />
I learned something else. I learned that stepping away from something doesn't mean it isn't important to me. In fact, I suspect I may make a foray into the world of infertility awareness in the not too distant future. But for now, I'm going to continue loving the health activism world from a slightly more passive stance. I need this right now, and I need to be ok with it. So I'm kicking the guilt out of my life; no more sheepish glances at the Blogger button my toolbar, and I won't be embarrassed to mention my old blog posts as if I had failed. I had a lot of success so far and between you and me, I think I will again, but I need to live a little more in the middle here. Thank you for understanding, as I know you do.<br />
<br />
<br />
<i>Not to leave you on such a "blah" note, here is an excerpt from a conversation I had the other day with a friend. Sometimes when I go on tirades they are just too funny to keep to ourselves, and public opinion was that I should share this with you. I want to go on record that I think gender equality means supporting both men and women in their unique gifts and challenges...but there are times when, to use my mother's expression, you just have to call a duck a duck, and this was one of them!</i><br />
<br />
I don't understand engendered fertility. With absolutely no pain or exertion, the testes produce millions of sperm every day. They produce so much that men actually, medically, have to expel some of the supply every few days to ensure the quality. This starts young, they go through a mildly embarrassing phase as they adjust to it, and it continues in many cases until they die or at least until they're too old to care. Women, on the other hand, go through a potentially very embarrassing phase, which is never really foolproof and can always surprise attack later in life, which can be uncomfortable and annoying at best and more likely involve quite a bit of pain and systemic effects (such as exhaustion, water retention, headaches, etc) just to rid their body of the habitat for the one or POSSIBLY two ovum they produced at a shot. This issue does eventually disappear but is replaced with a long and equally challenging change process and ultimately followed by imbalances. And to top it off, sperm released inside the body can survive 2-3 days waiting around for an ovum (just like men to sit around), whereas the ovum, once released, will only take a quick pass through and keep on moving in a 1-2 day span.<br />
<br />
Now, I believe in God and all but I can't help but ask "who came UP with this scheme?"Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-89495037084703786542013-12-27T22:33:00.001-05:002013-12-27T22:35:07.042-05:00St. Mary Magdalen Church 2013 Christmas ConcertThis song, "I Was Touched and I Believe", was my favorite of all the songs we performed at my church's Christmas concert this year.<br />
<br />
Yes, I have joined a choir. The last time I sang with a group was as a college sophomore, 8 years ago. The reason I stopped for so long? Damage caused by Sjogren's-induced dryness.<br />
<br />
Which, at least to me, makes this that much more of a surprise, and a miracle:)<br />
<br />
Anyway, I loved this song because it had a beautiful harmony (I sing alto), and the lyrics were just so amazing...<br />
<i>I believe the little child born of Mary, meek and mild, came to touch my aching soul, and by his touch has made me whole.</i><br />
What's not to love!<br />
<br />
MERRY CHRISTMAS AND HAPPY HOLIDAYS! Best wishes for whatever winter celebration brings you together with your own family, friends, and passions!<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/ArcH5EH198I" width="480"></iframe><br />
<br />
(Video is an excerpt from the concert recording by Jon Dorfman, permission is granted to share with proper credit and citation. Read more about Jon's work at his blog <a href="http://aspieepilogue.wordpress.com/">http://aspieepilogue.wordpress.com/</a>)Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-71827523434488542012013-10-07T20:33:00.001-04:002013-10-07T20:34:39.494-04:00Empathy: The Human Connection to Patient Care<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">To all my activist, patient, caregiver, and professional friends, this is something worth a little more than four minutes of your time. </span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />
</span> <span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">I'll leave it to you to take from this what you will, but I can say that to me, a patient, it said "SOMEONE out there has their priorities in order, and is trying to teach that to everyone else", and that's extremely comforting.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />
</span> <span style="color: #37404e; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 18px;">If you're up to it, leave a comment on this post with your reactions! I'd love to see what a little crowdsourcing could accomplish with this striking kickoff.</span></span><br />
<br />
<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/cDDWvj_q-o8" width="480"></iframe>Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com3tag:blogger.com,1999:blog-1367040849683320839.post-52126856227539655412013-07-06T08:54:00.000-04:002013-07-06T08:54:33.598-04:00Weeds<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipeJEZYtVdNENuCz3BW3z7pQaKuA-NlCm0WzC9IJP7zsbr0a-jpekcqfFt40r3yvBdIt4BuP-251MfYU9ex7-DGOpl3p2zNVgAJ2BMfhd0BtKF8CP06jvMveWIjRkLjJlW2QNzXR4oUi0/s1600/Weed-HD-Wallpaper.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipeJEZYtVdNENuCz3BW3z7pQaKuA-NlCm0WzC9IJP7zsbr0a-jpekcqfFt40r3yvBdIt4BuP-251MfYU9ex7-DGOpl3p2zNVgAJ2BMfhd0BtKF8CP06jvMveWIjRkLjJlW2QNzXR4oUi0/s200/Weed-HD-Wallpaper.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snazzy pot pic found for free, <a href="http://wall-height.com/weed-hd-wallpaper/" target="_blank">here</a>.</td></tr>
</tbody></table>
No, not that kind, silly! Geez, what do you take me for, really?<br />
<br />
<span style="font-size: x-small;">Although, while I've never tried pot myself, as it is slowly becoming legalized in more states across the country (and is already in use in other countries around the world) for medicinal purposes which may be relevant to our UII community, perhaps it will bear further scrutiny at a another point in time. I may need to find a subject matter expert on this, though. Hm....</span><br />
<br />
Anyway, no. I'm not referring to reefer. I mean the regular old garden-variety weeds (ha, yes, literally in my garden!) which have overrun my home. In case I forgot to mention it when I started to blog again this year, we bought our first home at the end of December and until now, I never had much of a garden. I was aware I don't have a green thumb; in fact I think it's downright brown. I've frequently joked that when they see me coming, houseplants simply die of their own accord to save themselves from suffering at my inept hands. (Hey I didn't say I was funny, I only said I try to be.)<br />
<br />
Then we bought this house. With roughly a half-acre of land. And lots of trees, and shrubs, and bushes, and over a half-dozen flower beds depending on how you count it. Which abuts an arboretum next to a state park, further fostering the spread of indigenous flora. Oh my. At settlement, the sellers told us a bit about all the planting they'd done and how they picked some varieties specifically for certain reasons, yada yada yada, leading me to the conclusion that I would have some impressive blooms come spring and summer and should probably learn how to tend these gardens. What I didn't expect was that these beds (not to mention the perimeters of the property) appear to be the most fertile soil I've ever seen, as evidenced by the epic proliferance of weeds that have tried to reclaim the land as their own.<br />
<br />
That's right, I'm waging war.<br />
Several times already this season, I've taken the largest sheers we have to the front and sides of the house, where the forests of weeds have all but hidden our front door. My mother in law, who does garden (whew), came over to help me start pulling weeds and thinning the herds of other plantings. I recall we spent 3-4 hours at it that day and only got about 85% of the way through one flower bed. We're discovering that there are only a small handful of actual plantings in each bed but the beds have no mulch or anything and are completely overrun. Speaking of overrun, say hello to the back 35-40% of my property:<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidh247fvTgcG896qTRehZp5quZew1FO1TuNLTmspTYeAoQqW1HqKISjIg2MR1S2kaEEelHUjj7K6i9DqElwzDkZ-8rBSXfVo_wEbOqydBKE02eclH4ahAZgZfoKGB1leVnSIHC7nrIThA/s1600/2013-07-06T07-41-45_0.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidh247fvTgcG896qTRehZp5quZew1FO1TuNLTmspTYeAoQqW1HqKISjIg2MR1S2kaEEelHUjj7K6i9DqElwzDkZ-8rBSXfVo_wEbOqydBKE02eclH4ahAZgZfoKGB1leVnSIHC7nrIThA/s640/2013-07-06T07-41-45_0.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Welcome to wisteria gardens...hey, maybe I can make this a destination and charge admission...!</td></tr>
</tbody></table>
Because what does a beginner (and bumbling) gardener needs on top of hundreds of well-rooted weeds in her flower beds? Why, a yard full of very mature wisteria of course! Let me just add, when these vines intertwined in all the trees and shrubs burst forth with these somewhat grape-scented clusters I took to the Google machine and found out what wisteria actually looks like. I believe this is <a href="http://www.nps.gov/plants/alien/fact/wifl1.htm" target="_blank">Japanese Wisteria</a> which, as you can see, has made an impressive climb into these tall trees across mine and my neighbors' yards. It is beautiful and I don't want to obliterate it altogether, but holy shnikes people, this is a bit much don't you think?! Oh, and amid the low-lying vines, there are other shrubs and plants and ... dun dun DUN ... poison ivy. Which means these two little homeowner newbies aren't going in after the vines on our own. We're thinking of waiting until the fall when it all starts to die down for the season and hiring professionals to hack it back. Which of course puts images of machete-wielding treasure hunters in my head...<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK5J14J599FhevyjBGhNwBG8IPeDkYYAFP4Yp6T2uQugShFdZ8i3F5nca3bGNKz2vRtBqB-IP7xzWf595uXGDjfL-RCDy690zS2-Y0Bf3y1tAPXmiTs6-dU0NqIfQQSCD5t2pr-cB45qE/s1600/machete+gardening.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK5J14J599FhevyjBGhNwBG8IPeDkYYAFP4Yp6T2uQugShFdZ8i3F5nca3bGNKz2vRtBqB-IP7xzWf595uXGDjfL-RCDy690zS2-Y0Bf3y1tAPXmiTs6-dU0NqIfQQSCD5t2pr-cB45qE/s200/machete+gardening.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another amused gardner commented about the use of machetes, <a href="http://ksgardenerd.blogspot.com/2011_03_01_archive.html" target="_blank">here</a>.</td></tr>
</tbody></table>
<div style="text-align: center;">
<span style="font-size: x-small;">(((Shakes head))) Enough of that!</span></div>
<br />
With all of this in mind, I celebrated our nation's birth on my day off Thursday by venturing out to one of my flower beds to claim my independence from these tyrannical weeds. To guard against excessive sun exposure, bugs, and contact allergic reactions, I donned long jeans, a long-sleeved t-shirt, and my UII baseball cap, and still only got in about 45 minutes of work before the heat was too much. I was fairly impressed with myself, though, because I took on the absolutely enormous tall weeds along the side of my garage. You know how they tell you to lift with your legs and not your back? Apparently I follow these rules, including while pulling weeds, as evidenced by my strungout hamstrings and bottom muscles for the last day and a half! I also somehow managed to get six - yes, SIX - bug bites on my shoulder blades (THROUGH my shirt) and two on my FACE in that space of time. For comparison's sake, I haven't really been bitten at all while sitting around the firepit in the evenings. Seriously?!<br />
<br />
My approach to my weeding has been simple - if it looks like a weed, or I simply don't like it, it comes out. I realize some of the things I'm pulling may be intentional plantings, but I don't like them and there's far too much going on out there! And after all, it's MY HOME, so it's my choice:) (That never gets old, haha.)<br />
<br />
But I also made one exception. As I go around yanking and yoinking, I skip over the clover. I know they're technically weeds too, but it's this cute kind of clover, growing only in small clusters in the beds, and just as I can arbitrarily rule that some non-weed must go, I can dictate that this weed shall stay!<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisb8LvA__drAVlEyiCJX-R3R-coWURf0mUZmXK8ay1yo5JrMBog8PMIc4fxi-8IucjvKsIQvXUwoxtcYtk2UmeVyDH7P9gQg_g91cEysyVpe4S8DXSLqvlHRmmAjo5y45Y-_7Rvavghok/s1600/four-leaf-clover.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisb8LvA__drAVlEyiCJX-R3R-coWURf0mUZmXK8ay1yo5JrMBog8PMIc4fxi-8IucjvKsIQvXUwoxtcYtk2UmeVyDH7P9gQg_g91cEysyVpe4S8DXSLqvlHRmmAjo5y45Y-_7Rvavghok/s200/four-leaf-clover.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cutie pies found <a href="http://www.redhorsetutoring.com/2013/01/good-luck-on-the-jan-sat/four-leaf-clover/" target="_blank">here</a>.</td></tr>
</tbody></table>
Besides, in the otherwise unpleasant task of weeding where I see things I don't like (worms, beetles, spiders, ick blech ack ugh), I get a peaceful satisfaction from scanning the surprise clover patches I uncover for that elusive four-leafer. Haven't found one so far, but I keep looking. <br />
<i><br /></i>
<b><i>And afterall, </i>I reminded myself, <i>you can't find a four-leaf clover if you pull all the weeds!</i></b><br />
<i><br /></i>
I just love it when I sneak a little wisdom in on myself. Kind of catch myself by surprise, and am reminded of things bigger and greater and grander than me. I can play demi-god with my flower beds, but ultimately it's not up to me to determine which things should stay and which should go in life. There are a lot of weeds in my world and in my past, but if all of the negative things went away what kind of person would I be? I'd have no drive, little ambition, no sympathy, and no purpose. I'd likely be alone, having run off Shawn and any other worthwhile companions either through my coldness toward others or my blasé approach to life. Perhaps I'd be living with my parents or worse, in deplorable conditions, never having been inspired to manage money. And I certainly wouldn't know any of you without a reason to write this blog.<br />
<br />
Maybe I am a four-leaf clover. Maybe my life is the rare find...what are my leaves? My gifts, my treasures, my capabilities and blessings that make me unique? <br />
<br />
<ol>
<li>My husband and family, who are unique because they give me so much support, and not everyone is this lucky.</li>
<li>My business/financial perspective, which helps me maintain some level of stability in my unstable life and lets me dream big knowing the small will be ok.</li>
<li>My faith, which I know is something every person has a unique relationship with but I have to acknowledge that for my many sickie peers who feel forgotten, I know I am not.</li>
<li>My diagnosis, which underlies everything else. I need my family's support more than I should because of these medical challenges. I crave stability for many reasons, including as a counterbalance to the uncertainty about my medical situation even from day to day and over time. My continued faith is, to some, surprising given the unpleasantries of being diagnosed with a chronic illness in my teens and the chronic challenges that come with that. </li>
</ol>
To come full circle, this is my weed. Without it my life may be cute like the three-leafers we see above, but nothing special; with it, I feel like a rare find:) And don't think I don't "get it" - I don't think we should necessarily pretend we enjoy the weeds, but we do need to take that step back and look at the whole picture sometimes. I think it's those moments when we think "just when something was going well, this weed popped up and spoiled it" when we're seeing our fourth leaf and just don't know it. Keep an eye out for those times that show you how rare a find you are too.Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com3tag:blogger.com,1999:blog-1367040849683320839.post-85258432397370915962013-05-27T23:20:00.001-04:002013-07-06T09:02:17.109-04:00You Don't SayAs some of you may know, I recently started at a new job. Yes, that's right, I've moved out of the world of the frazzled auditor and into that of the in-house accountant. My new coworkers are very nice, and I get to be part of some process analysis and revisions which are very exciting to my inner dweeb. But the best aspect so far? I leave every day before 5:30!!! That's right, I'm bragging:) (Ok yes there will be critical times when I have to stay 'late' but that's part of the biz, and late here will mean 6-7ish. Holy mackerel.)<br />
<br />
I've come into the team as a Senior Accountant, commensurate with my experience and the need to complete my CPA (yeah...that didn't die). The same day I started, another new hire from a different Big 4 firm came in as an Accounting Manager (he had been a manager at his former firm). I think we need a nickname for him...hm...let's call him New Dude, Too (NDT for short). NDT and I have found that it was beneficial to start together because we can relate to each other's backgrounds and help each other transition to our new worlds. None of our direct peers and few of our extended coworkers come from a similar background, making our connection that much more valuable.<br />
<br />
There are aspects of the transition to a new role that I anticipated, such as learning to express myself in ways my new team understands and establishing my reputation anew. Naturally, there are also things I couldn't prepare myself for, like the different approach a small company has to onboarding and training. Figuring out how to more autonomously structure my days based on the combination of ongoing tasks and special projects on my plate is a surprising though welcome learning curve. I realize these types of challenges are familiar to most people, but this is my first job change as an "experienced" hire so I find myself marveling at the experience itself!<br />
<br />
NDT and I find ourselves on the same page about most things so far. We like the same people, we note the same peculiarities with others, and ask ourselves the same questions as we learn how the company functions. Since we are at different levels, we have been asked to take on different tasks, but we've leveraged that too. He's been working on projects related to mapping accounts which he explains to me, and I've been learning the nitty gritty things like how to work parts of the accounting system which I show to him. <br />
<br />
I'm aware that as we're each establishing our images with the rest of the company, we are also developing our understandings of each other. Maybe I'm not supposed to say this, but men at the Big 4 just tend to be more traditionally polite; some might say chivalrous. They offer to carry things, volunteer for errands, and there are some you will never see walk through a door before a woman. My observation is a combination of my personal experiences as well as discussions I've had with countless coworkers of both genders. Perhaps it stems from the emphasis these companies place on classic manners such as which silverware to use for which course and email etiquette As a pair of X chromosomes, I have to say that this is pretty nice. It simply makes someone feel good to have someone else take a little extra effort to make their day a bit easier. And as a clutz with occasional physical challenges, this kind of treatment can really come in handy. However it's always been my opinion that men don't necessarily OWE this to women, and certainly that women can and SHOULD return the favors from time to time. I'm just as capable of holding the door for a man or taking a package from an overloaded coworker. Sometimes it just seems right to take care of my own task or get something for myself, even if it's just for the sake of taking turns.<br />
<br />
I suppose this is why NDT made an interesting observation the other day. It was a particularly nice, warm day and our company has a few tables outside for employees to use as well as a small walking track, and NDT and I like to use our newfound energy and time to make use of these amenities. On this particular day, we had grabbed our lunches and headed out to one of the tables. On the way, I offered to hold a door and press the elevator button, but NDT wouldn't let me. During the ride downstairs he observed "you're a very ... [pause] <i>independent</i> [pause] person. Like the other day when you wouldn't let me get the chair". <br />
<br />
<i>Me? Independent? Perhaps to the point of stubbornness? Tosh.</i><br />
<i>...Well. I don't know I'd use the word 'independent'. Maybe 'empowered' or 'capable'.</i><br />
<i>...Ok, independent. But that's a good thing!</i><br />
<i>...Ok yeah I see your point.</i><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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRoDPSNQE5LvA9zywH3qVE4xGGR668d4iGOrzLmKYChyhQWg5Kcv4eq1iFEcyxKVIqrLJb_3mTZXbQ8potdjnM-RMvgjJM2kzpepAq0fjG2SJgvExtmWAMHjovpQGdTe5jr5nrP6O4-u8/s1600/Independent-aholic.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRoDPSNQE5LvA9zywH3qVE4xGGR668d4iGOrzLmKYChyhQWg5Kcv4eq1iFEcyxKVIqrLJb_3mTZXbQ8potdjnM-RMvgjJM2kzpepAq0fjG2SJgvExtmWAMHjovpQGdTe5jr5nrP6O4-u8/s400/Independent-aholic.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fr. Anthony Messah describes what's it like to be an "independent-aholic" with this graphic, <a href="http://franthony.com/2012/08/the-confessions-of-an-independent-aholic/" target="_blank">here</a>.</td></tr>
</tbody></table>
So I tend to be a bit strong-willed, empowered, enabled, self-propelled...so what? <br />
<br />
We could go with an old-fashioned childhood experience psychology here if we wanted. I have strong, distinct memories from elementary school of teachers asking for a boy in the class to carry a heavy box. The funny thing was, I was larger and actually stronger than most boys in my class at that age. I was simply more capable of carrying the box than they were, but the teacher only asked for boys. I usually challenged the teacher (yes, at the tender age of, oh, 6 or 7 until 11); some would acquiesce and ask for any student capable of carrying the box, but others would still insist to my face that they wanted a boy to do it because it was <i>really </i>heavy or a girl might get hurt. It wasn't until well into my 20's that my strength began to fade. I may have always been a clutz and accident prone, but I was also particularly strong in my younger life. And those memories stayed with me.<br />
<br />
But we could also acknowledge the effect of a chronic diagnosis on my will. My strength as a child was sometimes dismissed, but on top of that it was threatened by chronic diagnoses as a teenager. It's well established (in my mind) that this was the point when I developed the mindset that I don't know how long I can do any given thing, so I'm going to do anything I can as soon as I can, because I don't know how long that opportunity will last. Maybe this same mindset led to this "independence". <br />
<br />
Or you could ask my parents, who would say I was born that way. There's a legendary story in my family about the L&D nurse who observed during my first bath that I had a "worried, worried look" and my innate perspective for simultaneously respecting and questioning authority. I never took any explanation at face value, though I wouldn't exactly violate it until I was sure it was flawed. It is said I was born middle-aged, with an independent questioning mind and a will that considered other people but didn't automatically agree with them.<br />
<br />
And so between a natural inclination, a childhood perception, and an adolescent encounter, I stand before you today, "independent". This is one of the first traits a new coworker noticed and went so far as to comment on to me directly. Well, you don't say ;)Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com1tag:blogger.com,1999:blog-1367040849683320839.post-9385521733305321612013-05-11T09:51:00.001-04:002013-07-06T09:02:17.120-04:00EnervatedI learned a new word this morning: Enervated.<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0obfaRiSRwjxx4WSDqfXKvxv87Eh6P-xJSXIxM8jwD0a8g9onZ-PcZSLaJniMgqiInaVomDctz23dHmCHQiKbUX2G5NfquHTe0T2N4V9-z_znm0pqfIFYntfsI2uoW1wBjvIS59xyP_s/s1600/Enervated+hippo.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0obfaRiSRwjxx4WSDqfXKvxv87Eh6P-xJSXIxM8jwD0a8g9onZ-PcZSLaJniMgqiInaVomDctz23dHmCHQiKbUX2G5NfquHTe0T2N4V9-z_znm0pqfIFYntfsI2uoW1wBjvIS59xyP_s/s1600/Enervated+hippo.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image found on a very cool <a href="http://www.manhattanprep.com/gre/blog/index.php/2010/08/#.UY5KuLWTjKA" target="_blank">Visual Dictionary site</a> from Manhattan Prep GRE Blog. I relate to this hippo.</td></tr>
</tbody></table>
I was a voracious reader as a kid. Remember those summer book lists they put out for each grade level, and you were supposed to pick one or two books - depending on your level and just how far the school board had that stick up their collective butt that year - which you would read over the summer and report on at the beginning of the next year? And inevitably, it would be two days before Labor Day and your mother would be hanging over you threatening not to let you enjoy those last few days of freedom if you didn't read that book already even though you both knew she was bluffing because unlike the school board your mother's butt was stick-free? I loved those lists. There were summers where I read the obligatory books from my list, but they had posted the lists publically so I went through the ones for other grades which were always 10 times cooler than my list and read a bunch of those. One year, I think I knocked out the entire list for two grades. And yes, I did other things, but no, I wasn't much of an outdoor person and I think in retrospect we can be glad I didn't spend more time in the sun at that age!<br />
<br />
Anyway, as a result of reading so much I've always had a pretty respectable vocabulary. Of all the "nerd" things I did, I never really minded being mocked for using "SAT words" because I liked being able to say precisely what I meant. But when you're a smarterish kid and go to a smarterish kid college (Villanova) and work with smarterish people in a professional setting, it takes more than compulsory school reading lists to maintain this reputation. It also doesn't really help that my best friend from school is an English major and my best friend now is a Journalism major with an unimaginable flair for all things peculiar and unusual. And I'd NEVER want to let you, my dear readers, get bored with my basic and unenlightened language when I write! I still love to read, but don't have the time to take down the volume of literature I did in the good ol' days, so now when I need a word to make my point or to do so in an engaging way, I leverage the wonder of the internet and hit Thesaurus.com!<br />
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So how did we end up with "enervated" today? Well, all week the husband and I have been trying to take down some household projects which involved a significant amount of time running errands and traipsing through stores to find just the right thing at just the right price as well as drilling, assembling, moving, and arranging several rooms worth of goodies. I've hung curtains in two rooms and a ladder on the side of the garage, made a truly manic pass or two around the yard with an imposing set of hedging shears, and assembled furniture. In the process, I learned a few things:<br />
<br />
<ul>
<li>Sauder brand furniture is gorgeous and of a delightful quality, but <i>heavy</i> (each of our two dressers weighs as much as I do or more) and when they say "assembly required", they ain't kidding! </li>
<li>Left in the wrong hands (mine), even a moderate pair of shears can be leveraged to take down several bushes not to mention weeds, overgrown flower beds, and some God-awful plant by the AC compressor. Also, with shears in hand I feel like a lady <a href="http://en.wikipedia.org/wiki/Paul_Bunyan" target="_blank">Paul Bunyan</a>, felling microforests of weeds with one pass of my blades...but I digress before this gets creepier.</li>
<li>My favorite weather is that which keeps me in a very mild sweat, and this makes me feel invigorated and up to taking on physical challenges, but also obviously makes it crucial to hydrate myself carefully. Because of my combination of Sjogren's Syndrome and Dysautonomia, managing hydration levels involves a balance of taking in the right quality and quantity of liquids as well as the right volume of salt at the right times (I use a high sodium diet to avoid Beta-blockers).</li>
</ul>
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And so, after yesterday (the apex of my physical activity for the week as performed on the hottest day) and without having consumed a drop of alcohol, I awoke this morning feeling remarkably hungover. It took me a few minutes to piece together that it was really straight dehydration. Guess I didn't quite hit the magic combination and timing of fluids and + salt yesterday after all. I also went to bed last night with significant arm and shoulder pain from overuse, so at least it wasn't a surprise when that was my worst symptom again today. </div>
<div>
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<div>
I wanted to come on here, share with you this tale of exertion and dehydration, and describe how my arms feel...but I needed just the right word to describe it:) Unable to come up with this adjective myself, Thesaurus.com provided this gem:</div>
<div>
<br /></div>
<div>
<a href="http://dictionary.reference.com/browse/enervated?__utma=1.649160639.1368057465.1368276027.1368279040.3&__utmb=1.1.10.1368279040&__utmc=1&__utmx=-&__utmz=1.1368276027.2.2.utmcsr=google|utmccn=(organic)|utmcmd=organic|utmctr=(not%20provided)&__utmv=-&__utmk=67029294" target="_blank">Enervated</a>: <i>adjective</i>; without vigor, force, or strength; languid. </div>
<div>
<a href="http://www.reference.com/example-sentences/enervated" target="_blank">Example of use</a>- "He had come in dehydrated, with sunken eyes, too enervated to even cry." </div>
<div>
<i>(How ironic!)</i></div>
<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXG1iTbvdk4kY8AaG9sU6Zt7jshfe4c3YuEfnyxA_yxPAdxyFztmw-XgmVYoE8xPrLdv4H-a0Lm0IRfXyTsikIkAYfMhBhAGW_YQhjWwedr88gisflXEFYBWDNzgNMWVvMTS-cEmIAqCc/s1600/Enervated+child.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXG1iTbvdk4kY8AaG9sU6Zt7jshfe4c3YuEfnyxA_yxPAdxyFztmw-XgmVYoE8xPrLdv4H-a0Lm0IRfXyTsikIkAYfMhBhAGW_YQhjWwedr88gisflXEFYBWDNzgNMWVvMTS-cEmIAqCc/s1600/Enervated+child.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Child, after my own heart, cited as Funny-potato.com but sourced from <a href="http://quizlet.com/9785135/print/" target="_blank">this vocab study guide</a>.</td></tr>
</tbody></table>
<div>
I think that says it all. Most of my body, and particularly my arms, are enervated. I'd love to soak in a tub but it needs to be cleaned first and I don't have the strength to do it right now. On top of it, my mother-in-law may come by to help teach me to garden (perhaps with a little less destructive yet cathartic abandon) and my Journalist friend offered to hop over and go on a trail walk with me. I know that when my body feels like this I should really give it a FULL day truly recuperating, but I can feel my <i>energized</i> spirit fighting my enervated body on this one! Perhaps I can try to limit myself of bouts of activity interspersed with couch-floppage? I'm sure my friend will be just as happy to veg with me, the puppy, and a glass of <a href="http://www.traderjoes.com/fearless-flyer/article.asp?article_id=184" target="_blank">iced green+white tea with mint</a>, right? Cause that sounds mighty good to me...</div>
<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjorTKg2NXf8fiy6xAFTqrnGjAhNpaYVa1I4JlfWdZnGihcBEzrcIpDEjVFf_KLRynCg5yXn-oXqcaLn4OSiHMp2dMMyllJYJH32zK8VLsUx65yBJIURMuW_pbD0VMhcXT14laIWmYeMg/s1600/Enervated+cartoon+2012-08-20.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjorTKg2NXf8fiy6xAFTqrnGjAhNpaYVa1I4JlfWdZnGihcBEzrcIpDEjVFf_KLRynCg5yXn-oXqcaLn4OSiHMp2dMMyllJYJH32zK8VLsUx65yBJIURMuW_pbD0VMhcXT14laIWmYeMg/s400/Enervated+cartoon+2012-08-20.jpg" width="287" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All-too-realistic comic strip by Chris Spain, found on <a href="http://www.asyoureup.com/comic/2012/08/enervated/" target="_blank">his blog from 8/20/2012</a>.</td></tr>
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Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-69470565567635120312013-05-08T20:24:00.000-04:002013-07-06T09:02:17.087-04:00Solar Flares and Sjogren'sIn a <a href="http://myuiiblog.blogspot.com/2013/04/boldly-going-where-no-crayon-has-gone.html" target="_blank">recent post of mine</a>, I told you I was participating in our good buddy Julia's competition to design an image that symbolized Sjogren's Syndrome (or my experience with it). Since Julia has now posted her finalists, I can reveal my full contribution (and I use the term loosely) to her effort.<br />
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As a visual thinker, I hoped the inspiration for this piece would come to me easily, but alas it wasn't that easy. The only symptom that every Sjoggie I know has in common in fatigue, and nearly all experience brain fog, but I have no idea how to visualize these experiences. I'm also not aware of any test, treatment, or device/tool that would resonate with all Sjoggies. So instead, I thought about what having Sjogren's means to me. To me, knowing I have Sjogren's frequently calls to mind the biggest, baddest trigger I have - the sun. Sun exposure is what kicked my disease into an active state when I started high school, and even mild exposure or God forbid, a burn, can send me into a flare now. The extreme, months-long flares I had in high school were much worse and it took a long time to learn how to manage my sun exposure more effectively.<br />
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That's when it struck me - the sun...causing flares...a solar flare! That's a sufficiently sardonic and yet punny symbol if ever there was one. It symbolizes both a burst of energy which people would usually consider a positive thing but which for a Sjoggie can precede a disease flare, <i>and</i> a destructive and essentially unpredictable force outside of our control.<br />
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<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJivMRJXHFiL4-RFV8TvvUS59aO_RhcIVs8YBa_7nltOnyodug10JnYRdhCBw6j1YzMX-yC3nVQ1mz4xqAh_g2htgUCfQ-_W-Od8vyR3k2NiaubPlKnNH9CqiLANoP6UUEwRkY3iJvzY4/s1600/Solar+Flare.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJivMRJXHFiL4-RFV8TvvUS59aO_RhcIVs8YBa_7nltOnyodug10JnYRdhCBw6j1YzMX-yC3nVQ1mz4xqAh_g2htgUCfQ-_W-Od8vyR3k2NiaubPlKnNH9CqiLANoP6UUEwRkY3iJvzY4/s400/Solar+Flare.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dear Lord, it looks worse every time I see it - I swear, it's less embarrassing in person. Ok not by much, but still! <br /><i>(PS- I gave Julia permission to use the image as she sees fit but since it was contributed for her use, I ask that you not use it but rather link to her or my site...you know, if you want to share an entertaining example pathetic adult artistry in crayon.)</i></td></tr>
</tbody></table>
Unfortunately, I must have been out sick the day they taught reasonable artistic skills in school (hey, I was out a lot, it's possible). It is PURELY out of my sense of obligation as a health activist to you and my fellow sickies that I forced myself to create my embarrassing image and submit it to Julia. Naturally, in True Julia Form, she couldn't let my humiliation go quietly into her files - no, she included it in her post today about the entries for her contest, <a href="http://reasonablywell-julia.blogspot.com/2013/05/creative-challenge-finalists-revealed.html" target="_blank">Creative Challenge Finalists Revealed</a>.<br />
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Fortunately, though, her post also contains submissions from truly gifted and exceedingly clever individuals. I am quite content to leave this type of imagery in their far more capable hands. Head on over and check out their handiwork - it's really quite touching! I think you'll like it....Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-30044871392312187452013-05-02T22:16:00.003-04:002013-07-06T09:25:20.986-04:00New Therapy Checklist - 10 Answers You Need <div>
On any given day, we patients progress through a common linear set of events, such as the following:</div>
<div>
<ul>
<li>We go to the doctor with a problem - a new symptom, increased frequency or severity of an existing symptom, or even to manage an asymptomatic issue of which we were already aware.</li>
<li>Especially in the case of a chronic illness, we celebrate a possible treatment which may alleviate this problem.</li>
<li>Eager to improve our lives, we start down the treatment path prescribed (be it pharmaceutical, physical, or another type of therapy)...and quickly encounter a side effect. Or perhaps we don't seem to experience relief, or maybe we do but this relief is incomplete or short-lived.</li>
</ul>
<div>
We're now faced with questions: Do I stop my treatment? Is this normal and safe? Is it normal but <i>not </i>safe? Are there things I can do to make it more tolerable? Does this mean it isn't working for me?</div>
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<div>
We have these questions because we didn't know what we were getting into. Either we misunderstood what our doctors told us, or perhaps they never even told us many of these details to begin with. The doctor's role isn't restricted to managing our illnesses, it also includes managing our expectations, and that clearly doesn't always happen.</div>
<div>
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<div>
Today while covering day one of the Patient Summit USA conference as part of the WEGO Health Press Corp, I listened to several presenters discuss critical aspects of the patient-provider relationship that impact how likely patients are to adhere to a course of treatment (especially medications). In fact, "adherence" was the buzzword of the event. From these conversations and drawing on my own observations as well feedback I've received from other patients, I was able to identify several key questions I believe a patient should ask about any treatment prescribed for them. As was pointed out to me by Dr. Steven Feldman who gave the opening speech this morning (yes, a DOCTOR said this, not a patient advocate), the fault doesn't lie solely with the patient - the provider has an obligation to communicate with the patient and to do so effectively. After all, if you say something but no one hears it, did you say anything at all?</div>
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So, in light of this argument that doctors should take a more proactive role in getting information out to patients even if they don't ask, I believe that, as always, it is ultimately on us to ensure we get the level of care we require. This care and information need to be at a level we can understand if they are to be used to their utmost whether we get that by reading information sheets or asked questions of the provider during the visit. And therefore I present to you not 10 Questions to Ask, but <b>10 Answers to Have</b> about any course of treatment before leaving the office.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCBW873QkEY9Ir51NSFr-s7Bips77qVlKwpE0jYB_F4kfVI9nUpZiN1AnPZ9WKjjY7Mr6T7vXgGL_kqTNCYmK85KhYhcaB4p3-a4lxzbCmUGns4_8X9mMoQIF73dVnfUhPg54mZx0lbzI/s1600/keep-calm-and-answer-the-questions-2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCBW873QkEY9Ir51NSFr-s7Bips77qVlKwpE0jYB_F4kfVI9nUpZiN1AnPZ9WKjjY7Mr6T7vXgGL_kqTNCYmK85KhYhcaB4p3-a4lxzbCmUGns4_8X9mMoQIF73dVnfUhPg54mZx0lbzI/s320/keep-calm-and-answer-the-questions-2.png" width="274" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I feel like purchasing this post, found <a href="http://www.keepcalm-o-matic.co.uk/p/keep-calm-and-answer-the-questions-2/" target="_blank">here</a>, for a few physicians - and patients - that I know!</td></tr>
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<div>
<ol>
<li><b>What diagnosis does this treat?</b></li>
<li><b>What symptom(s) does this treat?</b></li>
<li><b><u>How</u> does it work - what is the mechanism or process (i.e., stopping this from happening, increasing that, and so on)?</b></li>
<li><b>How much improvement can I expect (full relief, partial recovery, etc.)?</b></li>
<li><b>How long does it take to begin seeing a change in my symptom or condition?</b></li>
<li><b>How long before the full extent of relieve I can expect should be realized?</b></li>
<li><b>What are normal side effects which don't indicate a safety risk, and how can I cope with them?</b></li>
<li><b>What are abnormal or particularly worrisome side effects which signal I should stop the treatment?</b></li>
<li><b>Are there any other risks I need to consider, such as long term effects or interactions with other medications or supplements?</b></li>
<li><b>Why do you think this is the best treatment for me at this time? OR I have some concerns I'd like to discuss first. <i>(Depending on how you feel about the treatment.)</i></b></li>
</ol>
<div>
I can't stress enough the importance that you don't just <i>ask </i>these questions, but that you really get <i>answers</i>. Answers which MAKE SENSE TO YOU, at least to a reasonable extent. YOU have to follow this course of treatment; YOU have to make decisions while on the treatment about hurdles that may arise; YOU have to live in the body that was affected by these decisions. Here's an example of what I would consider reasonable answers for taking Plaquenil, a common maintenance drug prescribed for Sjogren's and related conditions.</div>
</div>
<div>
<ol>
<li>Plaquenil is being prescribed to treat Sjogren's Syndrome.</li>
<li>This medication should help minimize overall inflammation and general disease activity such as brain fog and fatigue.</li>
<li>Plaquenil helps reduce these symptoms by suppressing the autoimmune system so it won't attack healthy tissue as much.</li>
<li>This course of treatment is meant to reduce existing symptoms that are due to highly active inflammation processes in the body as well as slow the progression of the disease going forward. While possible, it is not likely that the patient will have complete relief from these symptoms. The patient should expect to notice an overall more comfortable level of functioning with less fatigue and brain fog and fewer and/or less severe flares.</li>
<li>Patients usually begin to notice improved symptoms in 3-4 months though not complete relief.</li>
<li>It may take as long as 9 months to realize the full extent of the improvement so we usually ask patients to stay on the treatment at least this length of time if possible.</li>
<li>Some patients have mild nausea when taking the pills, so patients may want to take them with a glass of milk. Also, it is not uncommon to have unusual dreams while taking this medication but this side effect is not harmful to the patient.</li>
<li>Patients may experience more concerning side effects. If a patient become physically ill for 3 or more days after beginning the treatment, discontinue use and contact the prescribing physician. If the patient has symptoms of a severe allergic reaction such as swelling of the throat, discontinue use and seek emergency medical assistance.</li>
<li>Two primary long-term risks are associated with Plaquenil. In some cases, patients taking this medication for a long time develop retinal toxicity which affects vision - therefore, we will have to get certain eye exams every 6 or 12 months to detect any build up before it affects your vision and can be reversed. The other effect can be liver damage, so we will run common blood tests before every appointment to monitor for signs that it might be affecting your liver function. We don't see these very often and both are reversible when caught early so we will stay on top of these tests.</li>
<li>I believe this is a good treatment for you because you do not have many risk factors, the treatment has a strong history of success in long term disease management, is inexpensive under your insurance, and simple for you to use. Other treatment options have lower success rates and more side effects, so I'd like to see if this works before trying those.</li>
</ol>
<div>
These really are basic pieces of information every patient should have about their own care. We are not employees to be directed, we are customers hiring a doctor to provide a service - care and guidance. Never lose sight of your own right - and obligation - to make the final decisions about your own health!</div>
</div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com1tag:blogger.com,1999:blog-1367040849683320839.post-75118842698826968162013-04-24T23:54:00.001-04:002013-05-11T10:14:10.565-04:00Boldly Going Where No Crayon Has Gone Before...and that would be into my hands for an art project! (Trust me, it's a fate no art instrument deserves.)<br />
<br />
As you know, my good Blogger Buddy (and general Sjoggie-extraordinaire) Julia always has a unique idea up her sleeve. A recent favorite was her <a href="http://reasonablywell-julia.blogspot.com/2013/04/i-want-to-come-along-too.html" target="_blank">plot to procure a small 'fainting goat'</a>, but trust me when I say that's just the most recent and relatively mundane idea to come out of her dangerous noggin'. <br />
<br />
In fact, one month ago she undertook a particularly risky enterprise. She opened a contest for designing an image around which Sjoggies can rally. A mascot, a logo, or a symbol, if you will, and encouraged all her readers to participate. Now, my family can testify that for all the traits I inherited, I was spared any and all artistic skills. But Julia, being as persuasive as we know she can be, made me an offer I just couldn't resist - the opportunity to attempt to put an image to the invisible world in which we live. Come on, now, how can I pass that up?<br />
<br />
Clearly, I can't.<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNO5rxi0Xz4qo0rQ92030aHxpJ0R8qa12eY2EfJk7T5afXJJkDIcmMSuSK4QMA9SWvZUWW0vAbBvt05lqGe64JEYosrZZZOf60GwghrC9fWAg7egXiEyVkG9wSYIYgyXUjcS_Si0WmD88/s1600/Drawing.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNO5rxi0Xz4qo0rQ92030aHxpJ0R8qa12eY2EfJk7T5afXJJkDIcmMSuSK4QMA9SWvZUWW0vAbBvt05lqGe64JEYosrZZZOf60GwghrC9fWAg7egXiEyVkG9wSYIYgyXUjcS_Si0WmD88/s400/Drawing.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo courtesy of my dear husband. Who was beyond amused by my undertaking.</td></tr>
</tbody></table>
Yes, ladies and gents, I dug out (ok, had my husband dig out) my big 'ol box of crayons and give this a go.<br />
<br />
What? You want to know what I'm drawing? HA, can't tell you that! It's a killer idea - can't let anyone snag that;) But fear not, I'll reveal my entry and rationale after Julia's deadline.<br />
<br />
In the meantime, why don't you join me?! Here is <a href="http://reasonablywell-julia.blogspot.com/2013/03/a-sjoggie-creativity-challenge.html" target="_blank">Julia's original post</a> about this competition (oh, did I forget to tell you - there are prizes?!). You'll see the original deadline was this past Monday, but she has since extended the deadline for slow-moving <i>art-eests</i> such as myself, and you now have until THIS Monday, April 29th! Here's a short summary of her criteria and rules, but check out her posts for all the details:<br />
<br />
<ol style="background-color: white; color: #333333; font-family: Trebuchet, 'Trebuchet MS', Arial, sans-serif; font-size: 16px; line-height: 25.15625px;">
<li>Email your image, drawing, concept of an image, sketch, or model that you think universally represents sjoggies everywhere. Use of a word or alphabet letters will disqualify your entry.</li>
<li>You may submit as many entries as you like.</li>
<li>You may email your submissions to: juliaschulia(at)gmail(dot)com.</li>
<li>All submissions must be received by April <strike>22nd</strike><b><u> 29th</u></b>, 2013, midnight. </li>
<li>Judging panel includes: John, Terese, Greg, and D#1. </li>
<li>If judging panel is unable to make decision, I -- yours truly -- will cast the deciding vote. </li>
<li>Finalists will be notified via a post on Reasonably Well and their mailing addresses will be requested. </li>
<li>Winner will be announced <strike>by </strike><b><u>on or about</u></b> May <strike>1st</strike> <b><u>13th</u></b>, 2013.</li>
</ol>
<div>
<span style="color: #333333; font-family: Trebuchet, Trebuchet MS, Arial, sans-serif;"><span style="line-height: 25.15625px;">So there you have it, folks. You have 5 more days to try to out do my design magic...if you dare...(mwahaha). GO!</span></span></div>
Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-70346593987730947692013-04-11T23:15:00.000-04:002013-07-06T09:02:17.091-04:00This Monkey Needs No Uncle<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix3LL0OWcnoP2vN6_gLWaS72CRYbteGxJXWBD_Tu6-4oG4bc4vO5c6h5EFw3M1euYIMQlhVzxqZA1_i0cBCy2t5e9pEsN_etUG00nJIcsQi9qf4JtApuyn0YTU9ZDA3xAeTigD0LfS42A/s1600/Monkey_Sam_Before_The_Flight_On_Little_Joe_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix3LL0OWcnoP2vN6_gLWaS72CRYbteGxJXWBD_Tu6-4oG4bc4vO5c6h5EFw3M1euYIMQlhVzxqZA1_i0cBCy2t5e9pEsN_etUG00nJIcsQi9qf4JtApuyn0YTU9ZDA3xAeTigD0LfS42A/s320/Monkey_Sam_Before_The_Flight_On_Little_Joe_2.jpg" width="287" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Able, the NASA monkey who, with pal Baker, became the first mammals to be successfully launched into and returned from outer space. Photo (and related article) found <a href="http://en.wikipedia.org/wiki/Monkeys_in_space" target="_blank">here</a>.</td></tr>
</tbody></table>
Able is a rhesus monkey, and was chosen from a group of 8 select monkeys who had undergone many months of training and testing through NASA's early space program. The monkeys were being considered for a special project - to be the first to successfully launch a living animal into space and return it to Earth in tact. Monkeys were the chosen species for their biological similarities to humans, and of these, Able was chosen to make the journey. Why? Because it was believed she could remain calm during flight.<br />
<br />
The monkeys (Able and her travel mate, Baker) weren't just strapped into the capsule, they were fitted into full-body restraints which prevented nearly all movement. In these housings, they were sent up in a windowless capsule. According to <a href="http://www.travelchannel.com/tv-shows/mysteries-at-the-museum/photos/mysteries-space-monkey-and-absinthe-pictures" target="_blank">Mysteries at the Museum</a>, they were launched atop a 60 foot rocket to a maximum height of 300 miles above the Earth. On the way up, Able's body - covered with sensors providing biological feedback to NASA's crew on land - showed signs of distress as she attempted to withstand excessive g-forces. Once they reached their peak, both astroprimates returned to normal and healthy vital stats.<br />
<br />
However, this reprieve was temporary, for after only a few minutes in orbit, the nosecone of the capsule which carried these hapless travelers separated from the rest of the vessel and plummeted toward Earth. We are told the monkeys experienced forces equal to 30 - 40 Gs on their descent, which ended only when their nosecone literally crashed into the ocean. A US ship immediately moved in to retrieve the capsule and its passengers, and the crew members were the ones who would have to open the capsule and discover their fates.<br />
<br />
Able and Baker were alive and well, still secure in their restrictive carriers.<br />
<br />
Yes, dear readers, the first mammals, the first primates, to survive a trip to outer space AND the return to Earth were women.<br />
<br />
These women were chosen for their intelligence, strength, and most of all, ability to remain calm and level-headed under extreme conditions. They survived physical environments that <i>quite</i> literally would crush most of us, not to mention the psychological terror of being immobilized in an enclosed space - one I highly doubt was lit or at least not well - that was propelled by unfathomable force, momentarily floated, then plummeted until it crashed and bounced about in the waves. Women who emerged just as stable as they were when they left the planet.<br />
<br />
Perhaps there's a deeper biological story behind the fortitude we see in modern women than we consider. We are creatures designed with the physical ability to <u>grow a human being within our own bodies</u>, to eventually convey this being to the outside world, and even to then provide all nourishment and care necessary to sustain this life, all on our own power. Furthermore, we see other women go through these experiences and still accept the tasks for ourselves...in fact, many of us feel a deep need to do it even if we are terrified. That is, we withstand severe psychological challenges to do what we know must be done. <br />
<br />
Of course, I'm sure there were male monkeys in the group of animals trained for space flight, and that they may have been nearly as qualified as Able and Baker for this trip. It's perfectly reasonable that the ladies exhibited traits that were inherent to them as individuals rather than them as females, just as some women are more adept at certain skills than others in our society. Surely, Able and Baker were selected for their unique personalities and abilities and not for their gender. But am I surprised that the first living Earth creatures to survive these trials were women?<br />
<br />
Not in the least.Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-85368113561963278182013-04-10T23:07:00.001-04:002013-07-06T09:25:21.054-04:00You Can't Finance Energy<br />
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<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFvc5sZuLui-kvN36wqQ67d-K6QCM2akMXHbRAeP2_PEhVho6Vu-9SjRSNMfh76OWqwo8ICF2hNkjoMRRPSt6zQzVG12lWxA4R0uTCh7GZIdbzhoB4nCZZJUMJugJpxKyt9_n5LycMU/s1600/exhausted+finance.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheRFvc5sZuLui-kvN36wqQ67d-K6QCM2akMXHbRAeP2_PEhVho6Vu-9SjRSNMfh76OWqwo8ICF2hNkjoMRRPSt6zQzVG12lWxA4R0uTCh7GZIdbzhoB4nCZZJUMJugJpxKyt9_n5LycMU/s320/exhausted+finance.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Illustration by Tim Bower, originally published with <a href="http://www.vanityfair.com/politics/features/2008/12/banks200812" target="_blank">this article in Vanity Fair</a>.</td></tr>
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<div style="text-align: center;">
Well if that doesn't look like the way I feel on the inside most days....</div>
<br />
<br />
Tell me if this scenario sounds familiar to you:<br />
<i>It's morning (or lunchtime or afternoon or the middle of the night during an insomnia spree or basically any time of day), and you want nothing more than to lie in bed a while longer. Not because you're comfortable - in fact, you may be in pain. But because getting up requires moving your body and that requires energy and you don't have any.</i><br />
<i><br /></i>
<i>But you do it; you get up. You have to. You have a child to get off to school, a friend to meet, a boss waiting for a presentation, and you have to get up. Furthermore, after you slog your way through a morning routine and are able to leave the house, you have to smile, pay attention, join in conversation, solve problems, and navigate other interactions in this world of ours which all require - you got it - energy. How are you supposed to do something with nothing?</i><br />
<i><br /></i>
What's that? A resounding chorus of "YES, THAT'S MY LIFE"? Thought so.<br />
<br />
Which of course means the next part will sound familiar too. The way so many of us get through this is by doing what I call "financing energy", but I don't think this is a very good idea.<br />
<br />
When we say we're going to "finance" something like a car, house, or even an education, we mean we're going to borrow money for the purpose of making a major purchase and pay it back over time. We agree to give up a smaller amount of our money each month for a period of time so we can have something bigger & better right now. Usually, at least if we do it right, we first consider how much we can handle giving up each month to make sure we don't "over extend" ourselves and if we were right, this works just fine.<br />
<br />
The problem is that energy doesn't work that way. You could say that we give up some money to get energy when we buy and consume coffee, energy drinks, even high-sugar items, or any other device or trick we can buy that results in what appears to be energy. But in the end, the only way to pay back energy is with energy. You can't trade money for it. If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while.<br />
<br />
Oh and the way we pay interest on purchases we finance? Where we pay a little extra in total for the luxury of spreading out the expense? Our bodies didn't forget that either. If you expend more energy that you really should have used, you won't just be out of energy tomorrow, you'll feel worse than you started today.<br />
<br />
Financing energy is a dangerous, if common, practice. It almost always ends in the bodily equivalent of foreclosure...or one might say, forceclosure. (I know, I'm slipping into Jen Pun Land, but this one's actually pretty logical.) An attempt to obtain more energy now than you should have will probably result in a total loss of all energy for a period of time and cause you some level of suffering. So, we have to find alternatives.<br />
<br />
Obviously, the best solution would be to space out tasks to respect your energy limits (much like credit card limits in this case), but this is obviously difficult at best. If this can't be done, we can try some less ideal options that might still save us the pain and regret later. A difficult but effective solution is to learn to say "no". No, I can't run that errand today. No, I won't be attending that event this time. No, you will need to wait for us to go over that. It's a fine line, because sometimes saying no leaves us feeling controlled by our diagnosis but it's really the other way around, we're in control because saying no now means we'll be able to say yes to things later! We have to remind ourselves, and each other, and those around us, that it's ok to sometimes say "I will be happy to do that tomorrow" or "please let me know next time that comes up". We fear missed opportunities, perhaps even more than the average person. But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.<br />
<br />
Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest. Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued. We are not the USA; we do not have a national debt and cannot print money. Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means. <br />
<br />
Ironically, as I was about to hit publish on this entry I saw the following post on Facebook. Seems I'm not the only one with this train of thought today!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2EOWWbzDOCmqSMO4KTqYNnc_Qs7wY3ZvI5pbylULs7T2FxA9JA8AiE1cXtDMpsZCKEjEMU_2a2SU1LTP-8WR8TdqbmN2JViCsZGic_J_sqzx8t6c6zBTnF0MzF4EHEWlPeTpaIDwk5qQ/s1600/dalai+llama.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2EOWWbzDOCmqSMO4KTqYNnc_Qs7wY3ZvI5pbylULs7T2FxA9JA8AiE1cXtDMpsZCKEjEMU_2a2SU1LTP-8WR8TdqbmN2JViCsZGic_J_sqzx8t6c6zBTnF0MzF4EHEWlPeTpaIDwk5qQ/s320/dalai+llama.jpg" width="320" /></a></div>
<br />Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com2tag:blogger.com,1999:blog-1367040849683320839.post-84187872985888397012013-04-04T23:58:00.001-04:002013-07-06T09:02:17.103-04:00Just Another Day<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-6IWBrhQoasXg5Zf_V2jCjuYnMXYevnPBzG7HJCXvSNlgX50d0tvWobZzliicjIgzl4UmeQK3fb_1TbEWH_ei04WWwTY_VcHtoz3LYnPNrJn-4-oFnmtXg_R520oOtnJLZ3x042Awaxk/s1600/drama.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="184" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-6IWBrhQoasXg5Zf_V2jCjuYnMXYevnPBzG7HJCXvSNlgX50d0tvWobZzliicjIgzl4UmeQK3fb_1TbEWH_ei04WWwTY_VcHtoz3LYnPNrJn-4-oFnmtXg_R520oOtnJLZ3x042Awaxk/s320/drama.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drama masks found <a href="http://www.google.com/imgres?um=1&hl=en&safe=active&sa=N&biw=1366&bih=659&tbm=isch&tbnid=R22-eP4vclV0bM:&imgrefurl=http://kimberlyanntapulgo.blogspot.com/2012/10/genre-of-drama.html&docid=7sSGis7Pfh_ZnM&imgurl=https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4xJOC5Ei0KjfQM5q92fJbBEGlgI7CqCQrZTFAxNiRX-ph6_PHJhNgn17AsBgknqHKbH6Vk9WGw_ZYz1bU68bpXbqyvFREXM4bekKpSJg4gEWxuZ8l3bdvHyJ7SjiuQuaqc4stxDGBleo/s1600/drama.gif&w=420&h=242&ei=BzVeUczRNKnh4AONnIDYCQ&zoom=1&ved=1t:3588,r:99,s:0,i:392&iact=rc&dur=1921&page=5&tbnh=170&tbnw=296&start=84&ndsp=23&tx=156&ty=64" target="_blank">here</a>.</td></tr>
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<br />
As any good Sickie knows, there are times we just aren't doing well. Times when we're run down, experiencing increased symptoms, and may be having heightened disease activity. These times are unpleasant and, especially as an activist, I spend a lot of time and effort trying to convey just how severe these bouts can be.<br />
<br />
Among ourselves, we often discuss the way our society encourages us to suppress this reality. We're supposed to put on a smile like the face on the left even when our bodies and souls feel like the face on the right. If asked "how are you?", any answer other than "fine" is considered impolite. Naturally, this adds to the feelings of isolation we tend to have and can an even contribute to the phenomenon where those with invisible illnesses begin to question their own sanity - and sickness. It is necessary for us to have ways to explain what we go through that resonate with "the outside world". This is why diagnoses are so important - a name, given by a doctor, means it's real, right? Medications and treatments are only given for "real" problems, of course, and having unified terms for hard-to-describe symptoms, such as flares, help us unite ourselves as well as demonstrate the validity of our experiences to others. And this is important.<br />
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On the other hand, at the same time that we are trying to validate ourselves, we also have a singular reality to deal with - we are sick. Every day. Not always to the same degree, and affected by a myriad of factors, but still "sick". And if we were to get worked up every time we hurt, are weary, or experience some other common symptom, we would eventually cease to function altogether. And so we develop our own sense of scale; our own perceptions of what's worthy of some emphasis and what's par for our own course. We simply do not want to live in a constant state of drama - it's bad for us and it can suggest to outsiders that we are drama mavens rather than reasonable people going through unreasonable challenges.<br />
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But these two facets - validating the severity of our situations and moderating our own daily sense of peril - can come into direct conflict. After all, it's rather hard not to sound dramatic when the word for a burst of illness is called a flare, don't you think?<br />
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Yet another reality, one I discovered while trying to write a laid back-sounding email requesting information so I could reduce my stress and avoid making myself sick. Oh bother, one battle at a time, I suppose. I think I'll channel Eeyore while I head off to bed and leave the problem of refining the English language to someone more qualified. Good night!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmBwLADBKLxLz3ey1AfUaJsr1Kt1W83vjb-rB2Vj7mQa6U6u9pkZubIwKNMItSZe_i3ujsDu7EV8kH8-aGbrJHLVhu8tbiQ8DDf71G8Mp8TX44NJzw8YzYDHFF4IufeRoO7FOF-szgDso/s1600/eyeore+drama.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="219" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmBwLADBKLxLz3ey1AfUaJsr1Kt1W83vjb-rB2Vj7mQa6U6u9pkZubIwKNMItSZe_i3ujsDu7EV8kH8-aGbrJHLVhu8tbiQ8DDf71G8Mp8TX44NJzw8YzYDHFF4IufeRoO7FOF-szgDso/s320/eyeore+drama.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm considering having this made into a sign for my bedroom door . In the meantime, you can see the original site, <a href="http://www.google.com/imgres?start=306&um=1&hl=en&safe=active&sa=N&biw=1366&bih=659&tbm=isch&tbnid=IU0NEhF4SfN11M:&imgrefurl=http://www.jucoolimages.com/drama.php&docid=8nxfb5lvrLKZzM&imgurl=http://www.jucoolimages.com/images/drama/drama_03.gif&w=382&h=262&ei=uDVeUbbcMKfa4AOnt4HABA&zoom=1&ved=1t:3588,r:16,s:300,i:52&iact=rc&dur=535&page=15&tbnh=162&tbnw=236&ndsp=23&tx=79&ty=78" target="_blank">here</a>.</td></tr>
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<br />Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com0tag:blogger.com,1999:blog-1367040849683320839.post-85294688571397136162013-04-02T21:39:00.000-04:002013-04-11T22:21:15.970-04:00I'm Ba-ack!I'm home!!!!!!!!!!!!!<br />
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This post is coming to you live from my new computer, complete with this-decade operating system and web browser, which allows me to use Blogger!<br />
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I'm overwhelmed and don't know where to begin, and the husband is leaving in a couple of hours for an out-of-town convention and I want to spend more time with him, but I had to stop in.<br />
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I'm alive,<br />
I'm doing ok,<br />
I haven't fallen apart or had an major medical mishaps.<br />
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I have, however, heard that some of you have been trying to check in on me, and I'm so moved. I also know an amazing number of you have stayed extremely loyal and continue to visit my blog or send others my way. What I don't know is how to tell you how grateful I am.<br />
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Which is why even though I don't have time right now to do you justice with a quality post, the first thing I had to do with my new operating system was stop in and share a huge virtual group hug, because I may have been MIA from your browsers but you haven't been missing from my heart all this time.<br />
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I'll be back to try to make it up to you as best I can. MWAH!Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com2tag:blogger.com,1999:blog-1367040849683320839.post-69333665863713430862012-05-29T23:10:00.000-04:002013-07-06T09:25:21.031-04:00My Spoonie MentorAt my firm, there is a big emphasis on mentoring relationships. We are assigned mentors, encouraged to pick our own, and look to how we can be mentors to the next generation. Our interim & annual reviews are held with mentors, and budgets are dedicated to maintaining these connections. Why have such a sophisticated structure in place to enforce relationships usually developed by happenstance? Why put so much focus on this entirely human factor in the oilled machinery that is one of the Big Four. Well, if you ask them, it's because these relatonships are critical to the development of each individual, which in turn affects the longterm health of the firm.<br />
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Hm...the passing of knowledge gained through study and experience has a strong impact on health - or vitality, fritfullness, and quality - of our futures. Sounds kinda like something every Spoonie ought to be doing. I have mentors at work: one assigned, one selected in addition, and even a few 'off the books' who have taken an interest in me. But I also have a Spoonie mentor, who I was lucky enough to find very early in my activism.<br />
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For those of you who don't know, Shawn and I are on vacation. Our main destination is in Georgia (which I will post about as soon as I can because it is beyond my best dreams), but due to the prohibitive price of airfare, we decided to drive down & back, staying overnight someone en route each way. Shawn drove the whole shift yesterday, and briefly when we departed this morning. Shortly into the drive I took over, and drove for several hours. However, after roughly 5 hours (give or take) I had to pull over and ask him to switch. I found myself squinting and blinking extra even with sunglasses (and given my sensitivity, I have at least 4 different types of them in the car and went through most on this drive) and still struggling to see comfortably. My control over the vehicle within the lane seemed to be loosening, and I was starting to struggle to make sense of signs around me. It was pretty clear I was fogging over.<br />
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As we pulled back on the road, Shawn behind the wheel with a reassuring word that he had no problem doing it, I was starting my usual habit of beating myself up in my head. I hadn't even pulled as long a shift as I wanted to, let alone after he drove the whole time the day before. Then I asked myself the question every Spoonie knows and hates: <i>"Did I really need to stop or was I taking an easy way out?"</i>. <br />
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You know what I'm talking about. Self-doubt is like a pimple on the tip of your nose - always shows up at the worst time, isn't usually actually your fault, makes you want to hide your face, and only gets worse when you pay attention to it.<br />
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But then I thought about fellow Sjoggie & clutz supreme (and she knows I mean that as a compliment), Julia. Specifically, I remembered <a href="http://reasonablywell-julia.blogspot.com/2012/02/it-could-have-ended-much-differently.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ReasonablyWell+%28Reasonably+Well%29" target="_blank">a post she wrote about a similar experience</a>. Not long ago during a visit back home, Julia found herself driving her mother when the Sjoggie brainfog rolled in. Of course, by definition this thought-muddling experience interfered with her ability to identify & react to the problem...in other words, she kept driving despite her impaired mental capacity. You can read her post for the rest of the details but suffice it to say everyone's ok but more by accident or divine grace than her road skills.<br />
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I don't think I needed Julia to tell me WHY pushing it to keep driving (especially at high speeds with cars up my rear bumper and intermittent surprise severe rain) would be a bad idea, but I did need her story to make it sink in. I would be taking my own life in my hands, as well as countless other people on the road, and most importantly Shawn's. Suddenly, I felt relief. We had defeated the ugly self-doubt monster and let me know it was not only ok but back-slap worthy of me to invoke the switch.<br />
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It's not the first time Julia's been my mentor - sometimes knowingly (answering my myriad of questions ranging from vitamins to managing blog stresses to family and everything in between) and sometimes unwittingly, through her stupendous blog. I know for a fact she's also mentor to many, many others, even if she doesn't know exactly who and when she's helped.<br />
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In all seriousness, I am grateful for Julia. I'm glad I found her blog, even more glad I reached out to her, and ecstatic that she wrote back. Maintaining this relationship is almost effortless for me and reaps so many rewards. If nothing else, there is so much comfort in that resilient voice reminding me it will be ok - not necessarily as I thought it would be, but still ok and I'll be happy. I encourage every one of you to keep an eye open for the mentor - or mentors - in your life. Whether there's someone you already know or will meet in the future, there's bound to be a person with whom you can connect and get the support you need. It's a rewarding experience that I wouldn't trade for anything, and so I wish you all the same gift!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj77O3-82vYbncpWP41XCkYWKLOHdj-pIJkeft7bPCO4ml72DOi9nE1LSAF2v40-ZK1GuW4POTYELkCtiKnlKjqazEJAzelQgf3VhSJspCa0ctpcwUHkMmGsaWJZlcyqX-l12koAn2PtrI/s1600/mentor.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="295" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj77O3-82vYbncpWP41XCkYWKLOHdj-pIJkeft7bPCO4ml72DOi9nE1LSAF2v40-ZK1GuW4POTYELkCtiKnlKjqazEJAzelQgf3VhSJspCa0ctpcwUHkMmGsaWJZlcyqX-l12koAn2PtrI/s320/mentor.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Learning from those who walk before me, like the beauties in this image, found <a href="http://riskrapper.wordpress.com/2009/03/08/paying-the-mentor/" target="_blank">here</a>.</td></tr>
</tbody></table>Jenny Phttp://www.blogger.com/profile/14870488565611786295noreply@blogger.com9