tag:blogger.com,1999:blog-67570753390596231192024-03-13T11:10:23.428-04:00Learning 2 Walk AgainA journal of my quickly declined health, being diagnosed and living with Avascular Necrosis (AVN)/Osteonecrosis (ON) and a possible Autoimmune condition, after using Mirena IUD.Unknownnoreply@blogger.comBlogger63125tag:blogger.com,1999:blog-6757075339059623119.post-18520589800823685702016-11-03T00:07:00.000-04:002016-11-03T00:07:23.573-04:00Adjusting My Path Accordingly<b>11.03.16</b><br />
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<i>“The pessimist looks down and hits his head. The optimist looks up and loses his footing. The realist looks forward and adjusts his path accordingly.” </i><br />
<br />
-- Robert Kirkman<br />
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I like to think of myself as an optimist -- especially when it comes to my health and well-being. Each time I come out of surgery, I set goals and prepare for the battle ahead. The battle is with myself and I have to keep my eye on the prize. I cannot settle. I can even go as far as making unrealistic goals in the hopes that I'll come out of this better... faster... stronger.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNaoNKV1RQqGsFUDxulnX4KmDhIiCsSWnnNGLzcgEPNf3WLkXh8x2NmlnjRi2iY_F70GO-RkrF2ZAgTtz0kbQ_pU0-NdZ4KAgHREPz8OPcY7NVY_QK774vB5fBjLa2efIdBXGzzmCru64d/s1600/Optimist_Pessimist_Realist.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNaoNKV1RQqGsFUDxulnX4KmDhIiCsSWnnNGLzcgEPNf3WLkXh8x2NmlnjRi2iY_F70GO-RkrF2ZAgTtz0kbQ_pU0-NdZ4KAgHREPz8OPcY7NVY_QK774vB5fBjLa2efIdBXGzzmCru64d/s320/Optimist_Pessimist_Realist.jpg" width="320" height="200" /></a></div>However, each new day has it's way of knocking me back to reality. I have to be realistic. I have to adjust my path accordingly. This is the case for so many things -- goals, expectations, feelings. <br />
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For nearly six years I have really wanted just one thing -- to walk normal again. Sure, no pain would be great, but again, experience has taught me that is not a feasible goal for myself. My circumstances have been a roller coaster ride filled with important lessons along every drop, flip and turn. And I know that the absolute wildest part of this particular ride is behind me. Surely, there are more rides to come, but I'm ready to hop off this one with a thrill-filled smile on my face, exit through the turnstiles and never get back on. <br />
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I return to work a week from today. I came out of surgery feeling strong and optimistic. That optimism carried me through two full weeks of recovery with hardly any wavering. At the height of my optimism, shortly after leaving my physical therapy assessment, I decided that my goal was to return to work completely aide free. That day, I'd switched from my walker to my cane and I was feeling really good about it. <br />
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The weekend passed and my first physical therapy session came on Monday. I got little sleep the night before because of the pain (it's the worst at night) and wasn't feeling as confident or as well as I'd hoped going into it. About 20 minutes in, I asked to sit and began to feel nauseous. I couldn't go on any more, because I knew it wasn't a sick feeling that would easily disappear. I reluctantly told my trainer that I was done for the day. That tore me to me pieces to say out loud. There were others in PT dealing with far worse circumstances and they weren't quitting. But I did.<br />
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As I waited for my dad to pick me up and the whole way home, I kept my head down and my eyes closed, wondering how I let this happen. I kept replaying the moment when I told the trainer I was sorry and she replied with, "it's OK -- your body has been through so much."<br />
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Eventually I realized that she was right. It had. And I was being really hard on myself. I was being overly optimistic, a touch pessimistic and not realistic. And it was not doing me any favors. <br />
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I went back to physical therapy on Wednesday, but I returned as a realist. I made it through the full session and left feeling like I'd made some progress. But the realist in me knew I still have a ways to go. The realist in me knew I wasn't going to go back to work aide-free by next week. <br />
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During my hip replacement, my femur fractured. This has lengthened the healing process and made it extremely difficult to get my gait back to normal. I'm still compensating for the pain and the muscles in my entire right leg are readjusting to new angles and trying to break out of old habits that have lasted years. I can't really expect all of that to just get better four short weeks after a hip replacement. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjliaJvCf8s_DEQquUncdK-T_zpttvFKUNfdlhVUGrVzbSW47HYR7jnjWbvoKYbTt_xHCwbIHX45p_G3jmrIPxV1ybk0vG-spOLWDFXaLvbtrQuI8Y2HEwhC7qinZo8-jQ2w6lgIGsN1Lzx/s1600/optimism.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjliaJvCf8s_DEQquUncdK-T_zpttvFKUNfdlhVUGrVzbSW47HYR7jnjWbvoKYbTt_xHCwbIHX45p_G3jmrIPxV1ybk0vG-spOLWDFXaLvbtrQuI8Y2HEwhC7qinZo8-jQ2w6lgIGsN1Lzx/s320/optimism.jpg" width="320" height="240" /></a></div>One thing I can say is that I will not be a consistent pessimist. I will not look down and hit my head. This entire experience from being diagnosed with Avascular Necrosis has seen me through stages of pessimism, optimism, and realism. When your body is your own worst enemy, it's sometimes easy to be all three in a single day. But these past 5-plus years have taught me many lessons about staying out of the pitfall of pessimism.<br />
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In the past, I've felt negatively about my progress, about the care [or lack thereof] from others, or about whether or not I'd ever be able to do simple things like paint my own toe nails or chase after my children. But I've learned to manage those negative feelings. I've learned to use my recovery time as a time to grow and evolve. In the silent, still moments of the day, I can wallow or I can refuel my heart and soul -- and though I do have moments where I do wallow, more often than not, I choose to refuel. <br />
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I put my faith and trust in a God that is so much larger than any circumstance. I can spend my days on the deck reflecting on His beauty, singing and reading words of His promise, and living in His grace. For me, there is no better way to deal with my realities and be reminded that I am loved, I am healing, and I can be patient with myself. I will miss these moments once I return to the hustle of a typical day. <br />
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Do I wish I could return to work and regular life without a cane? Of course I do. But I can't force things that aren't meant to be. <br />
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I <i>have</i> to be a realist. I <i>have</i> to look ahead. And I <i>will</i> adjust my path accordingly. <br />
<i><br />
"In all your ways acknowledge Him, And He will make your paths straight."</i><br />
<br />
-- Proverbs 3:6<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-80681819053139327462016-10-20T16:46:00.002-04:002016-10-20T17:33:57.624-04:00Right Hip Revival<b>10.20.16</b><br />
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It's been 8 days since I had my right hip replaced. With it being my second replacement, I knew what to expect going into surgery. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje4rzep8XddWGmf_njNsWF4kZq0VQqbyVgIcS_qW_YUYqLuslOxcLQTetBTS2MjBe-imOv998xXL4dqUn0DKwLSmjzEGserJNDb5jtrZ5bWFm3FZkeMCPR33thlD502Q0vi1yUsgvfU-5v/s1600/bigstock-Medical-Person-With-A-Question-47609674.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje4rzep8XddWGmf_njNsWF4kZq0VQqbyVgIcS_qW_YUYqLuslOxcLQTetBTS2MjBe-imOv998xXL4dqUn0DKwLSmjzEGserJNDb5jtrZ5bWFm3FZkeMCPR33thlD502Q0vi1yUsgvfU-5v/s320/bigstock-Medical-Person-With-A-Question-47609674.jpg" width="213" height="320" /></a></div>I was feeling good about surgery, but as the nurse was prepping me before anesthesia, she went through a group of questions. One was: "If you die on the table, would you like to be revived?" I wasn't expecting that one. "Um, yes, please," I responded to the nurse. She walked out of the room and it was just my husband and I left. I went into panic mode and began to tell him my wishes for our children and family through my tears. He asked me to stop, but it felt so necessary at the time. After all, it <i>was</i> a possibility. I don't know why the fear set in with surgery this time after I'd already survived 4 others, but after the nurse asked me that, part of me felt selfish -- like I was taking a risk I didn't need to take. I was having this surgery to improve my quality of life, but what if it resulted in the absolute worst? <br />
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I took a few deep breaths, and I said a prayer.<br />
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I was taken to anesthesia, where I knew it wouldn't be long before I knew my fate. Time would begin to warp and I'd wake up in recovery ... or I wouldn't. <br />
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Low and behold -- I woke up in recovery and made some desperate attempts at eye contact with a nurse. I was in pain and under heavy medications, but I was alive. The hospital was in overflow so I ended up being taken to a wing of the hospital where the nurses didn't typically tend to orthopedic patients. They were all great, however, and did their best. <br />
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I think I was so joyful to be out of surgery that it completely masked any pain I was having. I was exhausted, but not completely drained like I was with my first replacement in 2012. I walked up and down the hall using a walker the night of surgery. It was a slow walk, but it felt as normal a walk as I'd experienced in nearly five years. <br />
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They discharged me from the hospital the day after surgery, which was a huge relief. I didn't need a blood transfusion this time and I couldn't wait to get home to my own bed. <br />
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Since I've been home, I've had good days and some really bad days. There's been struggles with figuring out how to manage pain, get rest, keep my appetite and just get around the house to do very mundane things. Getting from one side of the house to the other is my equivalent of a marathon right now. I'm still using a walker to get around. <br />
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When I first came home, my right leg felt like it weighed 200 pounds. But just in the last day or two, it's gone back to a normal weight and I'm able to lift it with some ease. I can already feel my range of motion in my right leg improve. <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5r1AVfwnjIEo7OwXiocMuTl4hyphenhyphenKpV4M3DbTxDNIYleWWHk2FAnLqYsYA7bqinnEOFCJ-uQAJK9OUAerVZ3rojrxA0IVkEtYIR4PXapJRQxM4SJYawucIHAE7-ILOKnxjGfUnTXZ6urXsR/s1600/hip-rotation+copy.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5r1AVfwnjIEo7OwXiocMuTl4hyphenhyphenKpV4M3DbTxDNIYleWWHk2FAnLqYsYA7bqinnEOFCJ-uQAJK9OUAerVZ3rojrxA0IVkEtYIR4PXapJRQxM4SJYawucIHAE7-ILOKnxjGfUnTXZ6urXsR/s320/hip-rotation+copy.png" width="320" height="252" /></a></div><br />
Before surgery, my husband noticed that I was starting to walk and sit with my right foot turned inward. I'm certain I was doing that because when my hip rotated outward, it hurt so badly it felt like it could break off. I got used to turning it in to avoid the pain. Now that my hip can turn out, my entire right leg down to my toes are getting used to being able to turn outward again. The first few days, I had terrible pains in my leg as it adjusted, but that pain lessens a little each day. <br />
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I'd hoped to start PT by now but I haven't yet, because my doctor held off for a bit until I could get some strength back. I should begin in-home PT in the next few days. <br />
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Although I'm sure there will still be some tough days ahead, I feel like the worst of them are behind me. It's honestly difficult at this point to even imagine myself with the strength and balance to just walk normal. But each step on my left leg is a reminder of what's to come for my right. <br />
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For now, I just need to be patient with myself and let the healing continue. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-6332936015581384272016-09-28T22:46:00.000-04:002016-09-28T22:46:00.924-04:00Ready to Remember<b>09.28.16</b><br />
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I wrestled with the idea of returning to blogging. It's been two years since my last post. I decided to keep some things close, and honestly, my focus was elsewhere. <br />
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This blog has unexpectedly found a unique audience of mostly women who are living out some terribly unfortunate side effects of using the Mirena IUD. I never imagined that was where this blog was headed when I started it with a simple <a href="http://learning2walkagain.blogspot.com/2012/01/reason-to-believe.html">reason to believe</a> in January of 2012. <br />
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Nearly four years after that original post, I still have a reason to believe. Lots of them, actually. Two weeks from today, I'll have my other hip replaced. I've been putting it off for several years. Surgery is never convenient, but I know it's time.<br />
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I truly can't remember what it's like to wake up without pain, to walk without a limp or to even sit "indian style." But I want, <i>so badly</i>, to remember what life felt like before all of this began. <br />
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I don't want to re-hash the full <a href="http://learning2walkagain.blogspot.com/p/my-story.html">story</a>, but four years ago my life changed forever when I was diagnosed with Avascular Necrosis (bone death due to blood clotting) in both hips and shoulders. Four consecutive surgeries repaired my shoulders and replaced one hip. I was too exhausted after all of that to have the other hip replaced. I really hoped my right hip would repair itself despite my doctor telling me that wouldn't be the case. As it turns out, he was right. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC7A_RgcTmN16EcAWjn3l71yawcKLM44MsfwZeGHGIHs-Z5rJyUCkMLmz3YMA-2fFXwfFFKI6GmHNth26k10t1xIPnWgTR_qjAQaMYwQe1fG6gFUoJI8pd2bslG10AAOO6WQUtAkt1JTCG/s1600/Screen+Shot+2016-09-28+at+10.41.24+PM.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC7A_RgcTmN16EcAWjn3l71yawcKLM44MsfwZeGHGIHs-Z5rJyUCkMLmz3YMA-2fFXwfFFKI6GmHNth26k10t1xIPnWgTR_qjAQaMYwQe1fG6gFUoJI8pd2bslG10AAOO6WQUtAkt1JTCG/s400/Screen+Shot+2016-09-28+at+10.41.24+PM.png" width="400" height="241" /></a></div>It's progressively gotten worse with time. My right hip is beginning to collapse and once again -- I find myself <a href="http://learning2walkagain.blogspot.com/2012/11/dont-stop-livin.html">crooked</a>.<br />
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The surgery nerves are definitely starting to set in, but I'm feeling mostly optimistic about it. I've done this before so I have a better idea of what to expect. I know that hip replacements work wonders, because one half of me is strong and the other half of me is not. The hardest part, as always, are in those still, helpless moments after surgery. But I know I have to go through those moments to get to where I want to be.<br />
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In the past, it has helped to set some goals for myself. After my last set of surgeries, I completed a <a href="http://learning2walkagain.blogspot.com/2012/10/the-color-run-5k.html">5K</a>. I know that isn't much to some people, but when I set that goal, it seemed impossible. <b>But I did it</b>. <br />
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This time around the thing I'm most looking forward to is less pain, more mobility and more strength overall. My new goal is to take an adult ballet barre class at my daughter's dance studio once I've recovered enough. I can't put a time stamp on it just yet, but I hope to make it happen before the year comes to an end. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMzUrrR_NNFLJ4U7uk6Wqq2Ta23oBPgViVIgjK4YGOyyLizIdKS_0kVTUyQDHdpmwqy6j4zWxJv4QgPBu5vY2B4L2fWAh5LAySrctH3BahjmKGoYVNGviZYztSTo5aIDPuWBFWAnW6eN1/s1600/IMG_0588.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMzUrrR_NNFLJ4U7uk6Wqq2Ta23oBPgViVIgjK4YGOyyLizIdKS_0kVTUyQDHdpmwqy6j4zWxJv4QgPBu5vY2B4L2fWAh5LAySrctH3BahjmKGoYVNGviZYztSTo5aIDPuWBFWAnW6eN1/s320/IMG_0588.JPG" width="320" height="154" /></a></div><br />
In the last year, my daughter decided to hang up her pom poms to focus on dance. Watching her dance has really inspired me. I would never expect to be a good [or even a mediocre] dancer — that's not my goal. But I often admire her movement and strength. Her dancing reminds me of what life probably felt like before Avascular Necrosis. And it's just beautiful. Not even because her dancing is beautiful or because she's beautifully happy when she's doing it -- but because she moves so freely and <i>that</i> is a beautiful thing. <br />
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Unfortunately, my two youngest children were just a toddler and a baby when this began. They never really knew me as the physically strong, balanced, pain-free mom that I always thought I would be. My teenager knew that mom, but I'm sure that recent years have faded out that version of me in the same way that my own memory has.<br />
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I know that things will never be the same, but I'm attempting to remove as many obstacles as possible. And for now, that obstacle is a very damaged right hip. <br />
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<b>"In the day when I cried out, You answered me, and made me bold with strength in my soul."</b><br />
-- Psalm 138:3<br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-54626736605644672272014-11-15T22:05:00.000-05:002014-11-15T22:13:16.871-05:00The Bow in Her Hair<b>11.15.14</b><br />
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At a young age, bows made me cringe. <i>Especially pink bows</i>. They were so girly. More girly than I ever wanted to be.<br />
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More than twenty years later, the good Lord decided to teach me lesson. He gave me a daughter.<br />
<br />
During pregnancy, I was sicker than I ever was with her older brother. I was told many times that my morning, afternoon, night and every moment in-between sickness was because it was going to be a girl. I heard it so much that I would've been shocked if it turned out to be a boy.<br />
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The time came to find out the gender. I laid on the table as the ultrasound tech slapped thick, cold goo on my belly and rubbed it around with a device as images of our baby appeared on a screen.<br />
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"It's a girl!" she said as my husband and I smiled at the expected outcome.<br />
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We were both excited that <i>it</i> was a <i>her</i>. We just didn't know what to expect. My husband has three brothers. I have one brother. We had a son.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVs0ELFzHfQcWz1vahwgkVCRgG1Z1her2w7SZVNS-Dc7TzI6g4GKd-F7Hxf__zmuxrUck7vO9dD1D8S_DeivPNHaAK_7QtCQ9I7-PInVdCtqzlCMnHW-kSZ5yASqxG34w1YJISDw2wCMLw/s1600/ultrasound_pinkbow.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVs0ELFzHfQcWz1vahwgkVCRgG1Z1her2w7SZVNS-Dc7TzI6g4GKd-F7Hxf__zmuxrUck7vO9dD1D8S_DeivPNHaAK_7QtCQ9I7-PInVdCtqzlCMnHW-kSZ5yASqxG34w1YJISDw2wCMLw/s400/ultrasound_pinkbow.jpg" /></a></div>"<i>What would I do with a daughter?</i>" I thought.<br />
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And then, I had an epiphany. I would have a girl, but not a girly-girl. I was so serious about this that I specifically noted on the baby shower invitations that "colors other than pink are preferred."<br />
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That was so silly of me, right?<br />
<br />
But either no one saw my pink protest, or they chose to ignore it. She was showered with pink tutus, pink hair bows, frilly pink socks and pink onesies with sparkles and ruffles.<br />
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Not long before she was born, I packed several outfit options for her in my hospital bag. I decided I needed to meet her first before choosing which one would be "the one." After all, it was her "Here I am, world!" outfit.<br />
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Her entrance caused a bit of panic, because no one was ready for her. She was born on the fourth of July, and there was one nurse who didn't seem to believe how far along I was in the labor process — until our daughter was actually on her way out. I still hadn't seen an anesthesiologist, and my OBGYN hadn't arrived yet. I'm pretty sure everyone was enjoying fireworks with their families. <br />
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Luckily, my doctor arrived just in the knick of time. When I held her for the first time, I could not believe how beautiful she was. Every time I looked at her, more disbelief set in. We spent a few days bonding in the hospital and it was apparent that she already had a personality. She demanded attention, but she did it in the sweetest ways possible — through silly sounds or funny movements. When she smiled, the world smiled with her. And I've always felt like that was her purpose for smiling.<br />
<br />
It was our last day in the hospital before taking her to her home for the first time. I laid out the outfits I'd packed: a yellow dress, a blue and white floral print dress and a white and pink onesie with a few layers of ruffles on it. To my own surprise, I chose the white and pink ruffled onesie. And to top things off, I put a tiny pink bow in her barely-there blonde locks. <br />
<br />
She was absolute perfection.<br />
<br />
By time she reached Pre-K, she was getting picky about her outfits. They had to be dresses, and most of the time, they needed to be pink. She'd request a matching bow or headband to go with each one as she would look into the mirror and say, "Isn't this a beautiful outfit, mommy?"<br />
<br />
Of course, they were. <br />
<br />
She lives in a bright pink room with pink and white curtains. She wears tiaras like they are an extension of her head. She tells fifty percent of the people she meets that pink is her favorite color. <br />
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All of this, despite my attempt at a pink protest. <br />
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Now, as a kindergartener, bows remain a necessary accessory. <i>Especially pink bows</i>. But somewhere along the way, perhaps even that first day I took her home, I realized that I would embrace who she was — even if she was a girly-girl.<br />
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She was a tough girly-girl — something I thought of as an oxymoron before she came into my life. I worried less about her entering school than I did with her older brother. No one was going to walk all over her. She would never let that happen. I love that about her. <br />
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I love her love for bows and all-things-pink, too. If those are the things that make her happy, then they make me happy, too. <br />
<br />
Her life won't always be that simple. But I admire that, for now, it's as simple as tiaras, hair accessories and the color pink. And I will always cherish these years and will remember the careful thought that she put into the selection and placement of her bows. <br />
<br />
<strike>Few things.</strike> <i>Very</i> few things are more precious than the bow in her hair. <br />
<br />
I protested pink with a note. She protested my protest by being herself. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-41899680097143473802014-09-21T19:31:00.000-04:002014-09-21T19:33:31.239-04:00The Unknown<b>09.21.14</b><br />
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About two months ago, I had some sort of a heart episode —— sharp pain in my chest and left shoulder that knocked me to the ground and had me sweating. It came and went within 20 seconds or so, but it felt like minutes, at least. <br />
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I chalked it up to some type of anxiety attack [though I've never had one before] and I took a nap. I made a doctor's appointment and had an EKG done. The results of my EKG were normal, though the doctor didn't have anything to compare it to since I've never had an EKG before. <br />
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The pain I felt in my chest that day was very real, and very scary. And with my rapid decline in health about 3 years ago, I worried that clotting could still be an issue for me. After all, clotting stopped the blood from circulating to my bones, causing them to deteriorate in my hips and shoulder [but since the removal of the Mirena IUD, there had been no further signs of clotting].<br />
<br />
To be safe, she referred me to a hematologist [blood doctor]. I explained the same story to him. I explained what I knew of my family medical history. I recalled that a woman I met through my blog mentioned her Factor V Leiden blood disorder, which she believed led to her Avasular Necrosis. I asked to be tested for that, and just about every other potential blood disorder ever known to man. <br />
<br />
Weeks later, I learned that the only test that came back abnormal was my MTHFR. My doctor explained that I have mutated MTHFR genes [one from each parent], which I can't help but identify as mutated M*TH**F****Rs [though it actually stands for methylenetetrahydrofolate reductace. Mine is better, right?]. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhpkoEJFv5F3U6WYTSdqsBKml7k8dNBTFe2BFW_UuOYFn8LIiLfymXPIy5QICZvSp4jkuQ-th-CSHPqwPoxReZkFD2BeFNPi3TuB15MKw9vETVtnPjAaSTtBBF6xAbUPmy3wl17kol4f6b/s1600/MTHFR.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhpkoEJFv5F3U6WYTSdqsBKml7k8dNBTFe2BFW_UuOYFn8LIiLfymXPIy5QICZvSp4jkuQ-th-CSHPqwPoxReZkFD2BeFNPi3TuB15MKw9vETVtnPjAaSTtBBF6xAbUPmy3wl17kol4f6b/s320/MTHFR.png" /></a></div>The hematologist went on to explain that studies have not made any consistent connections between mutated MTHRs and blood clotting. He wished they didn't even include it in the testing, he said, because it just confuses people. It had certainly managed to confuse me, but the easiest way I can explain it [from reading about it] is that it controls the processing of specific amino acids that build protein and other important compounds. <br />
<br />
Dysfunction of these enzymes are associated with homocystinuria, which typically forms in the first year of life [but can develop later in life] and may result in skeletal abnormalities; anencephaly, which is associated with neural tube defects; and spina bifida, another neural tube defect where bones to protect the nerves of the spinal cord are not fully developed. <br />
<br />
It's safe to say that I now have skeletal abnormalities from my deterioration, but that is the result of Avascular Necrosis — not the mutated M*TH**F****Rs. Or are the mutated M*TH**F****Rs the cause of my clotting, which then caused my Avascular Necrosis? I asked the latter, but the hematologist says no. He says it's not my mutated M*TH**F****Rs' fault. However, my mutated M*TH**F****Rs are possible risk factors for heart attack, stroke and certain types of cancer. But those risk factors are not fully understood, because studies have given mixed results — that gene mutation in one individual may be associated with them, while another individual's is not.<br />
<br />
"Therefore, it remains unclear what role changes in the MTHFR gene play in determining the risk of these complex conditions." [SOURCE: <a href="http://ghr.nlm.nih.gov/gene/MTHFR">http://ghr.nlm.nih.gov/gene/MTHFR</a>]<br />
<br />
So, I have two mutated M*TH**F****Rs, but I don't really know what they are capable of. That's just like a M*TH**F****R, isn't it?<br />
<br />
At this point, I'm pretty sure I've had more than 100 blood tests. And yet, still no definitive causes. I'm still confident that my Mirena IUD triggered my health issues. I'm just not sure if it is the lone culprit. The wanna-be scientist in me wants to formulate the entire thing —— the exact process of how and why it happened. <br />
<br />
According to the Human Genome Project, a human being has 20,000 to 25,000 genes located on 46 chromosomes (23 pairs). These genes are known, collectively, as the human genome. I won't pretend to know or to fully understand this complex system of hereditary codes. <br />
<br />
All I do know about any of this is that my M*TH**F****Rs are mutated. And my doctor has no idea what that means for me [I do appreciate his honesty].<br />
<br />
The most common form of a mutated MTHFR [homocystinuria] affects at least 1 in 200,000 to 335,000 people worldwide.<br />
<br />
More than 20,000 new cases of Avascular Necrosis are diagnosed in the US alone each year. The number of individuals affected worldwide is unknown. Often, it goes undiagnosed or misdiagnosed. There are also few known causes of this disease. <br />
<br />
That's a lot of unknowns. But that's also life. Each day, we all wake up to unknowns. There's no telling what the next minute, hour or week may hold. <br />
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That's why I choose to focus on what I do know —— God wants me [you] to fulfill my [your] potential in life. <br />
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And that, I [we] will do.<br />
<br />
<b>"Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us ... "</b> -- Ephesians 3:20Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-69825559328704981872014-07-29T20:00:00.000-04:002014-08-22T14:41:14.995-04:00Arms Lifted<b>07.29.2014</b><br />
<br />
Back in 2011, when the pain started in my left hip, and then moved to my right hip, I was concerned. I could barely walk, and with each step accompanied by distressing pain, I was forced to sit still for a good portion of my days.<br />
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When it spread to my right shoulder, leaving me unable to lift or use my right arm, I was terrified. I couldn't wave. I couldn't throw. I couldn't lift my children. My youngest wasn't even a year old at the time. I couldn't hug them with both arms. <br />
<br />
I was living with broken hips and a broken shoulder, but they were not going to heal on their own as most broken bones do. <br />
<br />
There was a larger problem that my doctors could not [and still cannot] figure out. I was clotting severely, so much so that the blood wasn't reaching my bones, and my bones were dying. I was also dealing with autoimmunity for the first time in life, and was diagnosed with Sjogren's Syndrome. In a matter of months, I went from a <a href="http://learning2walkagain.blogspot.com/2012/06/then-now.html">nearly perfect health profile to an absolutely scary one</a>. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr0zrQnBg8dyPKjzHEQ8V3NZ0rjYAPo_xsx0Q2CnSxP40Asa0kQuBxV5ERBJSuZyCiAL-GOW_1Aw9yv0IShdsTRXoRiYzelI802FVESn0BHJxw5AP1ysuJR4a_WUUCweQ4cTTVMaL_6RQ/s1600/AVN.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghr0zrQnBg8dyPKjzHEQ8V3NZ0rjYAPo_xsx0Q2CnSxP40Asa0kQuBxV5ERBJSuZyCiAL-GOW_1Aw9yv0IShdsTRXoRiYzelI802FVESn0BHJxw5AP1ysuJR4a_WUUCweQ4cTTVMaL_6RQ/s400/AVN.jpg" /></a></div>I was telling my doctors what I believed the cause was [the Mirena IUD, which was inserted about 6 months earlier], but they refused to acknowledge that because there are no studies to back it up [not because studies disprove this, but because they don't exist - help me to change that <a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/">HERE</a>]. Although I wasn't even considering a lawsuit at the time, perhaps they feared I would involve them in a legal battle. I saw just about every type of doctor you could imagine. I had countless tubes of blood drawn. But still, they concluded my case as idiopathic, meaning no known cause. <br />
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I felt like they weren't listening. I felt like they didn't care.<br />
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It was a dark time for me, because I never felt more at odds with myself or the professionals I trusted with my care. <i>My well-being.</i><br />
<br />
I tapped into my faith like never before. I gave it all to God. It was beyond my control. <br />
<br />
For the first time in a long time, perhaps forever, I let faith alone guide my decisions. <br />
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I had the Mirena IUD removed, and the Avascular Necrosis never spread to my left shoulder, which was unique compared to most cases of Avascular Necrosis that quickly progress from one side to the next [like it did in my hips]. I started scheduling corrective surgeries, one right after the other, every 6 weeks for about 6 months. I needed to get back on my feet. I needed to lift my arm again. I had core decompressions surgeries on both hips and my shoulder. When my left hip collapsed, I had it replaced. Both hips have proved to be too damaged to benefit from core decompression surgery, meaning my right hip will also need to be replaced soon. <br />
<br />
But in my shoulder, which was the final joint to become affected, I saw steady improvement. During physical therapy sessions, I could raise my right arm a little higher each time. I could lift things that were a little heavier. <br />
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Through all of this, I continued to lean on God. I prayed for healing, patience, understanding. I asked for His continuous guidance. <br />
<br />
After six months of being in a wheelchair and heavily relying on aides, I took <a href="http://learning2walkagain.blogspot.com/2012/08/never-once.html">my first independent steps into my church</a> on a Sunday in August of 2012. Instead of sitting in the back of worship in a wheelchair, I was finally walking up the aisle when the band began to play the most fitting of songs, <a href="https://www.youtube.com/watch?v=722zPX1npcA">Never Once</a>. It was a powerful moment, and I felt the Lord's presence perhaps more prominently than ever before. <br />
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About a year and half later, I started training as a sound technician during the worship services. During my first night of training the band played Never Once. I smiled inconspicuously, knowing that I was in the right place. On the right path. I faithfully listened, and here I was.<br />
<br />
Last week, my husband and I were invited to lead worship in a choir-of-sorts from the stage. I wanted to put it all out there, to lift my arms to Him, and show Him praise. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBemLizX7nn5O4vbYEwmhPqsHzoRngCaoJPcNLt8-ZOINgPGpgg7whLTxGLVyexnfgYUApUqrDICaC1RB2TjC5B4FrG2u93qaetBoSw_fP98ZVKd9qzI6jUE1H23a2j34QOyNuPLrNM_Z7/s1600/handslifted.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBemLizX7nn5O4vbYEwmhPqsHzoRngCaoJPcNLt8-ZOINgPGpgg7whLTxGLVyexnfgYUApUqrDICaC1RB2TjC5B4FrG2u93qaetBoSw_fP98ZVKd9qzI6jUE1H23a2j34QOyNuPLrNM_Z7/s320/handslifted.jpg" /></a></div>The night before I wasn't sure if my right shoulder would cooperate. I knew it was drastically improved. But I still can't throw. I have limited mobility and strength. Even at rehearsal earlier in the week, I didn't even attempt to lift my right arm, fearing it wouldn't make it in the air.<br />
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That Saturday night, I prayed again. I reflected on how far I'd come and how many of my past prayers had been answered. I even expressed in prayer that I'd already received more than enough of His grace — more than I felt I deserved. <br />
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The next morning at church, it became apparent that God wasn't done with me yet. Without pain through three consecutive songs, and for two back-to-back services, my arms were lifted. Both of them. During the services, I relied on God. And I gained the confidence to once again rely on my right shoulder. <br />
<br />
Perhaps that ability had been there, and I just didn't know it. Lately, I'd been too comfortable. I was starting to settle. I was returning to making decisions that weren't guided by faith. While I wasn't completely out of the darkness I'd once experienced, I was certainly enjoying the light. And I was beginning to take that for granted. <br />
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If I could seek His constant guidance through the darkness, I needed to praise Him and continue to seek Him as I stood in the light.<br />
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Though I still seek answers to questions about my health, I've learned to focus more on the answers I've already received. <br />
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I do not lift my arms to Him simply because I can. I lift them with purpose — the purpose He gives me. <br />
<br />
<br />
<b>"So I will bless you as long as I live; in your name I will lift up my hands."</b><br />
-- Psalm 63:4Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-90967945950835154622014-07-18T22:14:00.000-04:002014-07-23T20:39:31.429-04:00The Magic Kingdom in One Day (with toddlers)The Magic Kingdom in one day? *GASP*<br />
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With toddlers? *DOUBLE GASP*<br />
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I'm here to tell you that it's not only possible, it can be enjoyable, too.<br />
<br />
Our family of five [children ages 3, 5 and 13] set out for Florida the week after school let out [for us, this is the second week in June]. We had plenty of other things planned, but while our daughter's [age 5] world still revolved around Disney princesses, we couldn't pass up going to the Magic Kingdom. We decided on just one day at Disney, which for a family of five is about $500.00. Our youngest [3] still takes daily naps [and, sometimes, still poops his pants], so we weren't ready yet for the full Walt Disney World experience. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiWkXOBDCBicuTCaaLn7JGxLzw3u_RWYxR3XqnyAZLgGwMKkyAtM2CjSSJ-k9IS7Al3Ws4HePRhyphenhyphenizSwu1hhZC4mpHSQGLxnqNmE2j1WIFc0JiNsDapUtHJB_UCxb4LDhzNJUe8blgrC_U/s1600/MK.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiWkXOBDCBicuTCaaLn7JGxLzw3u_RWYxR3XqnyAZLgGwMKkyAtM2CjSSJ-k9IS7Al3Ws4HePRhyphenhyphenizSwu1hhZC4mpHSQGLxnqNmE2j1WIFc0JiNsDapUtHJB_UCxb4LDhzNJUe8blgrC_U/s400/MK.jpg" /></a></div>We started by deciding which day of the week we would go. Disney is always going to be busy. But their website indicated that <b>Monday, Thursday and Saturday were the busiest days of the week in the Magic Kingdom</b>. So, we went on Wednesday. We didn't have another day to compare it to, but I'd say our choice to go in the middle of the week was a good one. Most of the lines we waited in were about 30 minutes. The longest line we waited in was one hour. <br />
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Leading up to our trip, I packed everything separately that we would need for our day at the park. Doing this ahead of time, and with careful thought was key to our success. <b>Here is a list of everything we took to the Magic Kingdom in a book bag:</b><br />
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<li>Two small ponchos</li><br />
<br />
<li>Small first aid kit</li><br />
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<li>Stroller hooks [1 large for stroller to hang book bag, 1 small to hang water bottles on the book bag loop]</li><br />
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<li>Two Brita water bottles with filter [we filled up at water fountains]</li><br />
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<li>Ziplock bag w/ pin backs</li><br />
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<li>notebooks and pens [for character signatures]</li><br />
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<li>Sunscreen</li><br />
<br />
<li>Jackery Bar portable charger [charges up three iPhones fully]</li><br />
<br />
<li>Snacks/Sandwiches</li><br />
<br />
<li>Glow sticks/necklaces</li><br />
<br />
<li>Phone charger(s)/charging station</li><br />
<br />
<li>Change of clothes for the kids</li><br />
<br />
<li>diapers/wipes</li><br />
<br />
<li>Lanyards for Disney pins [one for each child]</li><br />
<br />
<br />
We definitely wanted our daughter to experience the <a href="https://disneyworld.disney.go.com/events-tours/downtown-disney/bibbidi-bobbidi-boutique-downtown/">Bippidi Boppidi Boutique</a>. But we didn't necessarily want to use precious park time to make this happen. So, <b>we made reservations at the Bippidi Boppidi Boutique in Downtown Disney for Tuesday night [the night before we visited the Magic Kingdom].</b> There are two boutiques you can make reservations at: One in Downtown Disney, and another in Cinderella's Castle in the Magic Kingdom. For the Downtown Disney location, you don't have to have a ticket [and parking is free]. It's mostly shops and restaurants with a couple of small rides. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOB2y-_WxPqmZS9pZHYJfyyYwOjEEshgQIeXLQDdwYqj3Ji5vNgGFV3yVNsdmJiR-5luOu_L-liICwKiZ37CYvpAQRrG8B6odplhVkhRKU3856pDfJ0cripn-p-61Dkgq0x6Sd-9cLz5QE/s1600/trex.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOB2y-_WxPqmZS9pZHYJfyyYwOjEEshgQIeXLQDdwYqj3Ji5vNgGFV3yVNsdmJiR-5luOu_L-liICwKiZ37CYvpAQRrG8B6odplhVkhRKU3856pDfJ0cripn-p-61Dkgq0x6Sd-9cLz5QE/s320/trex.jpg" /></a></div>We had dinner at T-Rex. We were never able to make reservations ahead of time [because they were filled], so we went straight there and put our names on the wait list. We had about 45 minutes until our table would be ready, so the kids rode the carousel, the train ride, and played with Legos at the Lego store until it was time to eat. <br />
<br />
After dinner, we headed over to the Bippidi Boppidi Boutique, where our daughter [5] and youngest son [3] had reservations. The 13-year-old was completely uninterested in this, but I think he secretly found delight in his younger siblings' experience. We got the Knight Package [$18.95] for our son, which included a thick foam sword and shield and a cool hairdo. We did the Crown Package [$59.95] for our daughter, which included a princess hairstyle and make-up, a princess sash and tote, and she got her nails did. We took a Cinderella dress with us to save money, but once she saw all of the dresses in the store, she had to have one. And we were slightly expecting that anyhow. The fit of that dress was much better though. And just FYI - Elsa dresses are only available in the Boutique [with a package], but not for sale in the store. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_9M-pvV7KuNFxsto89R_eLcbY-rHoISf4Qa1YipKo4EszKVmFfbDSG0zpN5G2GQvUZPkB7-mYovlDf8WV-UxFkbV24vidptvZnNgYkxYFWO-4iLm_Dr1h8fNJfCmVGoI0T5myVZrjomCF/s1600/memorymaker.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_9M-pvV7KuNFxsto89R_eLcbY-rHoISf4Qa1YipKo4EszKVmFfbDSG0zpN5G2GQvUZPkB7-mYovlDf8WV-UxFkbV24vidptvZnNgYkxYFWO-4iLm_Dr1h8fNJfCmVGoI0T5myVZrjomCF/s320/memorymaker.jpg" /></a></div><b>We purchased Disney's <a href="https://disneyworld.disney.go.com/memory-maker/">Memory Maker</a> package [$149.00]</b>. I was really on the fence about purchasing this, but decided to go for it, because I knew I'd end up buying enough photos of us that would add up to at least $150.00. This was an excellent choice. <b>They documented their entire experience at the Bippidi Boppidi Boutique, and there was a portrait center in Downtown Disney where they had extra photos taken.</b> All of our photos were included for free because of the Memory Maker package. In fact, I felt like we were getting special treatment and extra photos when we mentioned we purchased it [but maybe they actually make everyone feel that special, and I was just hoping we were extra special]. <br />
<br />
After the boutique, our daughter could not stop looking at herself in the mirror for the rest of the night, until eventually she laid her princess head down and fell asleep, tiara and all. This worked out well, because she was all dolled up and ready for the Magic Kingdom the next morning. <br />
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Another thing we wanted to do was the <a href="http://www.drivepetty.com/race-tracks/orlando-walt-disney-world-speedway"><b>Richard Petty Driving Experience</a> at the Walt Disney World Speedway.</b> The oldest [13] did the junior ride along experience, and my husband did the ride along experience [you have to be at least 14 for this]. This included 3 laps in a NASCAR race car. For this, you do have to have a ticket to the Magic Kingdom. But still knowing our park time was precious, we booked it for the earliest possible time, 9:30 a.m. To get to the racetrack, there was a race way shuttle that picked us up from the Lost and Found building outside of the Magic Kingdom gates. We were picked up by 9 a.m. and they were riding by 9:30 a.m. The shuttle had us back to the entrance by 10:30 a.m. <b>The photos taken here were, unfortunately, not included in the Memory Maker package.</b> There were photos with plaques and videos offered to us for sale after the rides. I would have purchased the plaques, but didn't want to carry them around all day since we already had plenty of cargo. I was told that they are a separate company from WDW, but just located on their property. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdZ2h9t1srwdQs0XPwauHBhG5AQFseH9sM61ri8vDXTTue5mQJ-de0lkjdJ3Ie7ZKIa2VA9LFpSobrysw5pgwW7sjMEPORvg-b8_S9ZFYaPAXMXDRPLkmoNXFwsEWJM6ybhk8t9YSzOtNh/s1600/richardpetty.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdZ2h9t1srwdQs0XPwauHBhG5AQFseH9sM61ri8vDXTTue5mQJ-de0lkjdJ3Ie7ZKIa2VA9LFpSobrysw5pgwW7sjMEPORvg-b8_S9ZFYaPAXMXDRPLkmoNXFwsEWJM6ybhk8t9YSzOtNh/s400/richardpetty.jpg" /></a></div><b>Using the <a href="https://disneyworld.disney.go.com/plan/my-disney-experience/mobile-apps/">MyDisney app</a></b>, we made reservations at <b><a href="https://disneyworld.disney.go.com/dining/magic-kingdom/tonys-town-square-restaurant/">Tony's Town Square Restaurant</a></b> for 11:00 a.m. This gave us enough time to meet TinkerBell and Mickey Mouse, who are housed in the same building. We also had some extra time to step out into the Town Square to meet Pluto. At Tony's, I ordered a Margherita Pizza, and I kid you not, it was the best pizza I've ever had! The whole family agreed that the food was reasonably priced and delicious (and kid-friendly). I've been craving more of their pizza since we left there. <br />
<br />
After lunch, our FastPasses were ready to kick into full gear. <b>We were each given three FastPasses to use. We chose our fast pass experiences [and times] using the MyDisney app.</b> We did not purchase Magic Bands, because our admission cards worked just as well [that is what you use to scan your FastPass if you don't have a Magic Band]. You have a one-hour timeframe in which to use each Fast Pass. If you show up five minutes early, or five minutes late, your FastPass will not register [I saw this happen to others]. We weren't sure if we wanted to split up, so we all used the same times and locations for our FastPasses. <br />
<br />
<b>We used one FastPass early in the afternoon to meet Cinderella and Rapunzel at the Princess Hall.</b> With our FastPass, it took about 15 minutes. The regular waiting time was one hour, so I felt like this was an excellent choice. We would have used a FastPass to meet Anna and Elsa, but I was never given that option, so if anyone knows the secret to getting a Fast Pass to see them, do tell! I never did see anyone go to see them using a Fast Pass, so perhaps that's not an option yet. Those girls sure are exclusive, huh? <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV6arrKpZywlnu9qqu7eG4loxwl-xH3GcCX_fW1bOpUiZu_PuRKTkxjT0Itm4VAzcV6Z28Wuk8Fva85y0vY_UOEfiQQ82Q5nPIDvV3YrsHypeiTQK4-U-Bf8l5hJUlUlNjRLpvt_f-6w89/s1600/FastPass.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV6arrKpZywlnu9qqu7eG4loxwl-xH3GcCX_fW1bOpUiZu_PuRKTkxjT0Itm4VAzcV6Z28Wuk8Fva85y0vY_UOEfiQQ82Q5nPIDvV3YrsHypeiTQK4-U-Bf8l5hJUlUlNjRLpvt_f-6w89/s320/FastPass.jpg" /></a></div><b>We used another FastPass to meet Ariel</b> and we basically walked right in to see her. The regular wait was about 30 minutes, so we probably would have been better off using this Fast Pass for the Seven Dwarfs Mine Train, or the Dumbo ride [which was about a 45-minute wait]. <br />
<br />
<b>We used the last FastPass for Ariel's Journey Under the Sea ride.</b> We waited about 10 minutes with our FastPass, and the regular line was about a 45-minute wait. I felt pretty good about our use of the FastPass for that one.<br />
<br />
We stayed in FantasyLand for majority of the day. That's also where we chose all of our FastPasses, so we wouldn't be too far from our time-sensitive destinations. By about 3 p.m., we headed to Tomorrowland. We rode the Tomorrowland Speedway [which would have been another good option for the Fast Pass]. Then, my husband and oldest son rode Space Mountain, while the "littles" and I danced with the Incredibles. Shortly after, the youngest took a quick power nap in the shade while my daughter had some ice cream. <br />
<br />
By 6 p.m., we were heading over to Frontierland and Adventureland. By this point, we got very picky about the rides we went on. <b>We only rode Jungle Cruise in Adventureland, and Thunder Mountain Railroad in Frontierland.</b> Either of those also would have been an excellent pick for the FastPass. We waited about one-hour in line for each. <br />
<br />
We didn't make any dinner reservations. We needed some freedom to go and do as we pleased after most of our morning and early afternoon was reserved activities. We actually <b>packed up snacks and sandwiches</b> in a lunch bag and scarfed those down as we kept moving. I really don't know if we were allowed to bring in sandwiches, but we were much too hungry to care. <br />
<br />
We snuck back over to Fantasyland for a bit. Throughout the day, each time we saw a Disney photographer, we took a photo and added it to our MemoryMaker account using a card that they scanned. I had hoped by this point [about 8 p.m.] that the line for Anna and Elsa had gone down some. But it was a 120-minute wait, so we never did meet them. There was no way the "littles" were going to wait in a 2-hour line to do anything. That was a bit of bummer, but we didn't let it get us down. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_A1LDT0SCRmh-ABCM7bCXQ3meSh6NyWorEWd3NI_DiFqn1M-8SdoHA7KX69YM4vcrs1wGMDsX2EvIoBO1cVH-nZ1-U2h4Q7ugqEmhq2q-ZBEUJgqSLOq3PpWrsU3ccNcR6Zm_PdzUM65o/s1600/3711459299_be777673ba_z.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_A1LDT0SCRmh-ABCM7bCXQ3meSh6NyWorEWd3NI_DiFqn1M-8SdoHA7KX69YM4vcrs1wGMDsX2EvIoBO1cVH-nZ1-U2h4Q7ugqEmhq2q-ZBEUJgqSLOq3PpWrsU3ccNcR6Zm_PdzUM65o/s400/3711459299_be777673ba_z.jpg" /></a></div>We rode a few more quick rides in Fantasyland, and then headed back to the Town Center to watch the <b>Main Street Electrical Parade</b> at 9 p.m. The kids were exhausted at this point [we were, too], but the smiles on their faces gave us enough energy to stick it out. We got a <b>perfect spot on the curb of the main circle in the Town Center.</b> This got the kids up close and personal with the parade characters, and it was close to the park exit. One of Cinderella's mouses came over and bowed to our daughter, who was still dressed up as Cinderella. She clearly felt very special by this gesture. <br />
<br />
We took the ferry back to the parking lot, and drove off as the fireworks blasted over top of the trees. <br />
<br />
A 13-hour day had never gone by faster, or been more magical. From just one night at Downtown Disney, and one day in Magic Kingdom, we ended up with about 105 cherished, captured moments [many that included ALL of us, and we didn't have to lug a camera around]. Then, there's the countless memories housed in our brains. With exception of one [maybe two] of our FastPass choices, and the fact that we probably won't do the Richard Petty Driving Experience again [been there, done that, but we'd consider it], I'd do it all the same again. <br />
<br />
Oh, and in case you were wondering, our 3-year-old didn't even poop his pants while we were there. Yep, it's magical.<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-34323952226957617832014-07-01T00:06:00.000-04:002014-07-18T22:27:36.775-04:00Nine Lovely Days<b>06.30.14</b><br />
<br />
I graduated college on a Friday in June of 2002. That following Monday, I did what everyone else in my family (five generations back to be exact) had done. I got a job at the local shipyard. I was a young mother at the time — my son was almost two years old, which meant there was no time for a graduation trip or time off before entering the "real world." <br />
<br />
Twelve years had passed, and I <i>still</i> hadn't managed to take a full week off of work. <br />
<br />
So much had changed from then to now. I got divorced. I got a new job. I got remarried. I had two more children. I had four surgeries. Since I was only actually paid for four weeks of maternity leave (but needed six), and I chose not to take disability leave after my surgeries (using vacation instead). I struggled to accrue enough time off for any type of extended vacation.<br />
<br />
But this month, that changed. <br />
<br />
<i>We</i> finally did it. Our family of five managed a vacation that lasted nine whole days. <br />
<br />
<b>Nine lovely days.</b><br />
<br />
About a month prior, I had a cortisone injection in my hip joint. I'd hoped it would last, but it didn't. Still, despite the pain, I went. I was beyond determined to make this trip happen. I needed it. We all needed it. <br />
<br />
We were going to Florida. And even if my family had to wheel me in a chair (which they didn't), we were going to Disney World. <br />
<br />
We started planning at the start of the new year. We even made an agenda for our trip, which was really more of an outline of options than a 'must-do' list. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXTrvUB523fsL6fobtQHApOkjla-HOHRCDABfD8hL-nsKacXnZi_jN9BgjzGwjrhg4WzPp4lgwMgKGvk_2ALt0hPN7_eAKSZKsuXXym0ng2C4bUBfB9mFwowUa8B5ga2Xgtb3NE3UzziA0/s1600/10489862_10152200316207799_4130062886055837003_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXTrvUB523fsL6fobtQHApOkjla-HOHRCDABfD8hL-nsKacXnZi_jN9BgjzGwjrhg4WzPp4lgwMgKGvk_2ALt0hPN7_eAKSZKsuXXym0ng2C4bUBfB9mFwowUa8B5ga2Xgtb3NE3UzziA0/s400/10489862_10152200316207799_4130062886055837003_n.jpg" /></a></div>I stared at the agenda, updating it constantly right up until the day before we left, and daydreaming about how some it would play out. <br />
<br />
Two days of driving. Three days with my best friend and her family. Several days at the resort, swimming and doing other activities. One day at Downtown Disney. One day at LegoLand. And one very full day at the Magic Kingdom at Walt Disney World. <br />
<br />
On the road, the kids (ages 3, 5 and 13) cooperated much better than anticipated, with no major meltdowns along the way. Spending time with my best friend and her family was instant <i>Chicken Soup for my Soul. </i> <br />
<br />
The Magic Kingdom was as magical as I remembered it as a child, and if you are interested, I go into [a lot] more detail about that day in another post: <a href="http://learning2walkagain.blogspot.com/2014/07/the-magic-kingdom-in-one-day-with.html">The Magic Kingdom in One Day (with toddlers)</a>.<br />
<br />
I can safely say that it was far better than any daydream I conjured up. <br />
<br />
I didn't daydream the moment when my daughter, who was dressed as Cinderella, got Cinderella's autograph in her book, and walked away hugging the book to her heart while letting out a happy sigh that brought tears to my eyes. That was real.<br />
<br />
I didn't daydream my youngest son constantly climbing up and zipping down the water slide at LegoLand with a boisterous laughter that seemed to be volumes above the dozens of other children playing in the area. That was real. <br />
<br />
I didn't daydream my oldest son grabbing for my hand in public as we walked from the arcade to the ice cream parlor. That's something he hasn't done in years, but something I sorely missed. That was real.<br />
<br />
I didn't daydream my daughter practicing a song she titled, "I love you," before performing it for my oldest son. Or how she would learn to swim all by herself for the first time. Or how our youngest would do 180s from the side of the pool, only taking breaks to eat watermelon or to hug his [stuffed] baby lion. Or how my husband and I could do more laughing than stressing, and talk about things other than what we needed to accomplish the next day and who needed to take the kids where at what time. <br />
<br />
We all only needed to be with each other. Having fun. Spending undistracted time together. Making unforgettable memories. And even relaxing some.<br />
<br />
For <b>nine lovely days</b>. <br />
<br />
I'm so glad I didn't let my pain hold me back. <br />
<br />
Long vacations may not have been a thing of my past, but they are certainly a thing of our future. <br />
<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-63594868776058854162014-05-16T21:51:00.005-04:002014-05-16T21:58:06.367-04:00One Long Wait, One Real Hip, One Dead Phone<b>05.16.14</b><br />
<br />
I was doing so well. People were actually commenting on how much my stride had improved. <br />
<br />
About two weekends ago, my husband and I decided to be kids again. We went to an amusement park —- all by ourselves! We rode roller coasters, shared ice cream, played games and won some stuffed animals for the kids, and we even dip-dyed candles just for kicks. <br />
<br />
I knew going into our little excursion that I would be pushing my body to the limit, but I'd hoped that I would quickly recover. <br />
<br />
But I didn't. So, after two weeks of limping that was getting progressively worse, I returned to the doctor to request another cortisone injection into my joint. My last injection had lasted months, and had great results. And I wanted my stride back. <br />
<br />
It was a typical visit, except that my phone was dead and I quickly realized how much I would miss the distraction it provides in such a setting. In the main waiting area, I flipped through a few magazines that I was fairly uninterested in, occasionally glancing up at the national news, which played out scenes of flooding in New York. Out of the windows, I took notice of some tall, slender trees with only limbs at the very top, and for some reason, I wished I knew how to identify said trees. <br />
<br />
"If I had my phone charged, I could probably look up what type of trees those are," I thought. <br />
<br />
"Or perhaps I wouldn't have noticed the trees at all," my thought continued. <br />
<br />
Eventually, my name was called for my next wait in the room. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEhwte451588GqY1EkqNemfFMjgur8QwJwbShOY8RAWjkM2ZXkJ83kSXX4sLoHnq6IpSo91q3jKn7um3XieKcq8pGhBxE41pkUnr_GmupIUMfLDMZxyprqoDuDhASFc3RgUJ5PEQkvxWtp/s1600/The-Waiting-Room.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEhwte451588GqY1EkqNemfFMjgur8QwJwbShOY8RAWjkM2ZXkJ83kSXX4sLoHnq6IpSo91q3jKn7um3XieKcq8pGhBxE41pkUnr_GmupIUMfLDMZxyprqoDuDhASFc3RgUJ5PEQkvxWtp/s320/The-Waiting-Room.jpg" /></a></div>Once in the room, there were no magazines. No television. No other people. No windows. Just me, and my latest hip X-ray on a computer screen. <br />
<br />
Of course I know my hip has been replaced, but each time I'm faced with it on screen, my thoughts lie somewhere in between impressed and utterly confused. I have one real hip, and one titanium hip. An actual piece of myself missing and replaced with a large piece of metal, a screw, and a round wire that, at one point, was holding together a crack created during my replacement surgery. There it is on the screen and there it lives in my body.<br />
<br />
I was reminded of a recent X-ray I had for kidney stones where two nurses thought they pulled up the wrong X-ray.<br />
<br />
"You're too young for a hip replacement," one nurse said.<br />
<br />
"Avascular Necrosis," I replied.<br />
<br />
She confirmed her understanding with an "Ah, Okay," as only nurses and medical professionals do, because no one else knows what the heck Avascular Necrosis is.<br />
<br />
It was late in the afternoon as I continued to wait in the room, and the building was quiet enough for me to hear the doctor making his rounds. I could tell he was still a few rooms down the hall. This was going to be a long wait and I had no idea what time it was. Maybe it was better that way.<br />
<br />
My eyes returned to the X-ray, and I briefly tried to make sense of how any of this even came to be, but decided to cut off that train of thought. With little options left, I decided to stare at the floor for a bit. I began visualizing the grains of the wood floor into images, the way people often do with clouds. In them, I found shapes reminiscent of teddy bears and "Mother Mary." <br />
<br />
I checked my phone to see if it had miraculously received some power, but it hadn't. I rested my right elbow on the chair, plopped my head in the palm of my hand, and let my heavy eyelids lower to their rightful place. <br />
<br />
A few moments later, the doctor walked in. We talked for a bit. He asked me to consider getting my right hip replaced. He said that the shots, while helpful, are only temporarily masking the problem. He said that when/if this next shot wears off, I should go ahead and schedule my next replacement.<br />
<br />
I looked back to the computer screen at my one real hip. I could see that my hip joint was splotchy-looking and that the ball of my hip was not round, but somewhat ridgy, like a mountain top. Earlier, I was so focused on the replaced hip that I didn't take as much notice of the real one.<br />
<br />
Just months prior, I thought my hip was on the mend. I was optimistic about having years, at least, left to go on it. But here I was again, trying to imagine any time this year when a having another replacement surgery would be convenient. Of course, no time came to mind. <br />
<br />
I nodded along to his statements, realizing the truth in them, but every emotion inside of me just wanted to break out into a full on kicking-and-screaming tantrum right on the same spot of the floor where I had just envisioned teddy bears and "Mother Mary."<br />
<br />
But on the outside, I just kept nodding.<br />
<br />
After my shot, which involved a needle that appeared to be as long as my titanium hip, I was in route to my final wait area for a new X-ray. I caught a glimpse of a clock in the hallway and realized it was about 5:35 p.m. My appointment was scheduled for 3:30 p.m. I walked in and sat down with some relief to a television that was airing an episode of "House Hunters." Just as I grew annoyed at the woman on screen who grumbled over a kitchen backsplash that didn't suit her tastes, they called me back for the X-ray. <br />
<br />
After no more waiting was left to be had, I exited the X-ray area to find no one at reception, no doctors, no nurses, no other patients. Just me, the X-ray technician who now held an image of my one real hip in her hands, and a custodian who was cleaning up after a full day of patients. <br />
<br />
They let me drive home this time, which was different than the last time I received a joint injection. I wasn't sure why, but I didn't question it, and besides, no one was there to question anyways. Within an hour of getting home, my injected hip was in so much pain that it felt like I had a 200-pound leg hanging from my hip, ready to cut loose from the rest of my body. My temperature rose to 100 degrees, so I laid down to rest and hoped to wake up to something better.<br />
<br />
By morning my temperature was gone, and my pain was barely there. I got out of bed to discover that I wasn't limping any more. The injection was doing it's job. This could last days, weeks, possibly months. <br />
<br />
I'm going to give my thoughts some time to settle. With an upcoming trip to Disney World next month, I'm pretty certain the pain will return. <br />
<br />
I'm also certain I'm not willing to let my circumstances stop me from having adventures and experiences with my young family. Again, I'm reminded that sitting and letting life pass me by is not, and may never be, my cup of tea. <br />
<br />
For as long as the Lord gives me another day -- I've still got places to go, sights to see, memories to make. <br />
<br />
Avascular Necrosis is an unruly condition that has taken the very framework that held me up and attempted to knock it down. But I am so very thankful that options exist to give me the quality of life that I desire. <br />
<br />
And so, I will keep on keeping on ... until I can't any longer. <br />
<br />
I almost forgot what my days of waiting without a smart phone were like. It'd been a few years since I've gone through that process without shoving my face into a tiny, little screen that emerged from my purse. And I kind of liked being more present and observant in the shifting rotations of waits after all.<br />
<br />
<b>"Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us." </b><br />
— Romans 5:2-5<br />
<br />
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-69087690239626932962014-05-01T19:45:00.000-04:002014-05-01T22:07:09.860-04:00The Last Day in April<b>05.01.14</b><br />
<br />
It's been three months since my last post, and so much has changed since then. Yet, so much else has remained the same.<br />
<br />
Some days are almost painless, and others are painful. This is the life I've learned to live and I am A-OK with that.<br />
<br />
I started a new job in February. On my first day, I spent most of my time cleaning up my office and organizing my things. I opened up boxes that I had filled up from my previous office, just a few hundred yards up the road. I didn't go far, but it was still a big decision for me to leave a job that I knew I loved, for a job that I could potentially love more. I pulled books and other memorabilia out of the boxes, making sure to give each item it's own special place.<br />
<br />
A bookshelf lined the wall next to my new door. I placed three framed photos of my family on top of it, carefully shifting over a small 2-ring desktop calendar — the kind with one day on each page that you flip as the days pass. I did a double-take, surely with a look of confusion that luckily no one would have seen since a wall blocked me from my new co-workers' sight. <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXMDiuLxmdlZjkzpxw6h_F2SEQJrjz25PCMqdGe9WZDjTLpfXbr9Z7lMZXpOCMK83B9rM14UUvsAIOotj-ItggWqTA91cr2PJUymt7dWW_hO2iikc0qwNXu8Pb5D54fEofhN5a1t3vmYC9/s1600/430.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXMDiuLxmdlZjkzpxw6h_F2SEQJrjz25PCMqdGe9WZDjTLpfXbr9Z7lMZXpOCMK83B9rM14UUvsAIOotj-ItggWqTA91cr2PJUymt7dWW_hO2iikc0qwNXu8Pb5D54fEofhN5a1t3vmYC9/s320/430.jpg" /></a></div><br />
The calendar was flipped to April 30, 2014. It was February 18, 2014.<br />
<br />
It struck me the way that my birth date normally does. But my faith, as it so often does, led me to ponder what else was involved. <br />
<br />
Certainly, a person flipped it to that date. But why <i>that</i> date? Was I supposed to let it go or read into it further? Was it a sign from above or was I over-thinking this?<br />
<br />
Well, as of yesterday, April 30, 2014, has come and gone. It was my 35th birthday. <br />
<br />
It was a very busy work day, followed by a night of fun. My husband, along with a few family accomplices, managed to surprise me at my daughter's dance class with a new outfit he bought me — right down to the high heels and earrings. They sent me out the door, completely childless, with a card that said to go home and get ready for dinner. I felt all <i>Pretty Woman</i>-like, minus the fact that I've never been [or will be] a hooker. <br />
<br />
As some of you may know, and probably most do not, my birth date on it's own has major significance for me. My birth mother was only 16 when I was conceived. She visited an abortion clinic, but left when she watched a video that explained the procedure. She chose to give me life, and in turn, gave my parents a daughter. And my three children a chance at life. One day, they may have children, too, so her selfless decision can be seen and carried on, potentially, for many generations to come.<br />
<br />
I've lived a good life. An amazing one, actually. The kind any loving mom would want her child to have. <br />
<br />
The kind my birth mother wanted me to have. And the kind that my mom and dad provided me [and still provide me] with. I simply cannot thank one, without thanking the other. She gave me life, and they were there every step of the way — helping to mold me, teach me and to catch me as I fall.<br />
<br />
Behind all of the fun surprises and the 35th anniversary of my birth, I had some mixed emotions. <br />
<br />
You see, the very woman who gave me life met with her doctor yesterday and was given a cancer diagnosis and a median life expectancy of one year. As far as I can tell, she will face her battle with strength and optimism. <br />
<br />
I already know she is strong. I don't know the amount of strength it must take to give your baby a chance at a better life — one that doesn't involve you — but I know it would be an immeasurable amount. For her to have that type of strength at the young age of 16, I can only imagine the type of strength she's developed in her 35 years since then.<br />
<br />
The thing is, life expectancies are merely an average of <i>others'</i> experiences. Not hers. <br />
<br />
And there is <i>nothing</i> average about her strength. <br />
<br />
And for me, there is <i>nothing</i> average about the last day of April. <br />
<br />
<b>"We live by faith, not by sight."</b><br />
<br />
-- 2 Corinthians 5:7<br />
<br />
<br />
<br />
<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-44095446798346047772014-01-21T19:48:00.002-05:002014-01-21T19:53:54.529-05:00Avascular Necrosis and Disability Benefits<b>01.21.14</b><br />
<br />
<i>The following is a guest post from <a href="mailto:mac@ssd-help.org">Molly</a> at <a href="http://www.disability-benefits-help.org/blog">Social Security Disability Help</a>:</i><br />
<br />
Avascular necrosis, or bone death, is a serious medical condition that worsens with time. Progressive pain and loss of mobility can make it impossible for an individual with Avascular Necrosis to maintain employment and earn a living. The resulting loss of income and lack of medical insurance can be financially devastating. <br />
<br />
If you have Avascular Necrosis and can no longer work, you may be eligible to receive Social Security Disability benefits. Disability benefits can be used to help offset lost income, medical costs, and daily living expenses.<br />
<br />
This article will provide you with a general understanding of Social Security Disability benefits and will prepare you to begin the application process. <br />
<br />
<b>SSD Programs and Basic Eligibility</b><br />
<br />
Social Security Disability benefits are governed and distributed by the Social Security Administration (SSA). The SSA offers two different types of disability benefits. These are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Each program has separate eligibility requirements. <br />
<br />
<li>SSDI is designed to offer financial assistance to disabled workers and their eligible dependent family members. To qualify for SSDI, applicants must have paid a certain amount of Social Security taxes throughout their careers. For an in depth look into SSDI technical eligibility requirements, visit the following page: <a href="http://www.disability-benefits-help.org/glossary/social-security-disability-insurance-ssdi">http://www.disability-benefits-help.org/glossary/social-security-disability-insurance-ssdi</a>.</li><br />
<li>SSI, on the other hand, is designed to offer financial assistance to disabled individuals who earn very little income and have very few financial resources. Eligibility for SSI is based solely on the financial limitations set by the SSA. Learn more, here: <a href="http://www.socialsecurity.gov/ssi/text-eligibility-ussi.htm">http://www.socialsecurity.gov/ssi/text-eligibility-ussi.htm</a>.</li><br />
Individuals who qualify for SSDI but still fall within the SSI financial limits may be able to receive both SSDI and SSI benefits. <br />
<br />
<b>Medical Eligibility</b><br />
<br />
If you meet SSDI or SSI technical eligibility criteria, you will then have to prove your medical eligibility. The SSA will perform an in depth review of your medical records to determine if your avascular necrosis is severe enough to cause complete disability. Your records will be compared with listings in the Blue Book, which is a manual of recognized disabilities and the medical requirements for each. <br />
<br />
Because there is no Blue Book listing for avascular necrosis, the SSA will attempt to match your symptoms with those of another Blue Book listing. The following listing requirements may closely match many of the symptoms caused by avascular necrosis:<br />
<br />
<li>Section 1.02 – Major dysfunction or deformity of one or more joints</li><br />
<li>Section 1.06 – Bone fractures </li><br />
<li>Section 7.05 – Sickle cell anemia</li><br />
<li>Section 14.02 – Lupus</li><br />
<li>Section 14.09 – Rheumatoid arthritis </li><br />
If you require joint surgery as a result of avascular necrosis, you may also qualify for disability benefits under Blue Book listing 1.03. This listing requires that you are unable to effectively walk for a period of at least 12 months following surgery. <br />
<br />
To access all Blue Book listings, visit the following page: <a href="http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm">http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm</a><br />
<br />
In is important to note that the SSA will consider the effects of all of an applicant’s conditions. For this reason, it is important to include information on any and all health conditions that impair your ability to work—even if they don’t occur as a result of your avascular necrosis. <br />
<br />
<b>Medical Vocational Allowance</b><br />
<br />
If you do not meet or match a listing in the Blue Book, you may still be eligible to receive SSD benefits under a medical vocational allowance. Essentially, this means that the SSA will evaluate your physical capabilities, your job training, your age, and several other factors to see how your condition affects your ability to hold a job. <br />
<br />
To qualify under a medical vocational allowance, you will be required to complete a Residual Functional Capacity (RFC) form with a medical professional. You and your doctor must complete separate RFC report forms. Be proactive and have these done even before the SSA requires them. This may prevent any delays in your claim and possibly allow you to be approved faster. <br />
<br />
<b>Social Security Disability Application Process</b><br />
<br />
Before beginning the application process, it is important that you collect all required medical and non-medical documents to support your disability claim. This may include the following:<br />
<br />
<li>Education and training documentation and employment records</li><br />
<li>Financial information regarding income, savings, and financial resources </li><br />
<li>Diagnostic test results, including imaging scans and bone biopsies</li><br />
<li>Notes from medical appointments that show physical findings, diagnosis, and observations about the limitations you experience and the outlook of your condition</li><br />
<li>Records of the treatments you’ve undergone and the manner in which they have affected you</li><br />
<li>RFC report forms from you and your treating physician</li><br />
Once you have collected the necessary records you can begin the application process online or in person at your local Social Security field office. The application consists of several different forms. It is important that you take your time when filling these out. Any mistakes or incomplete information may result in the delay or denial of your claim.<br />
<br />
<b>Receiving a Decision</b><br />
<br />
After submitting your disability claim, you may not receive a decision for several months. While you are waiting, it is important that you continue to follow any prescribed medical treatment and continue to collect updated medical records. This will help you in the event that your claim is denied. <br />
<br />
If your initial claim is in fact denied, you will have 60 days in which to appeal the SSA’s decision. It is important that you do not give up and that you continue on in your pursuit of disability benefits. It is understandable to be discouraged after receiving a denial but the appeals process is often a necessary step toward receiving disability benefits. In fact, many more applications are approved during the appeals processes than during the initial application. <br />
<br />
For more information visit Social Security Disability Help (<a href="http://www.disability-benefits-help.org/blog">http://www.disability-benefits-help.org/blog</a>)or contact Molly Clarke at <a href="mailto:mac@ssd-help.org">mac@ssd-help.org</a>. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-85274405514130289152013-12-14T00:33:00.004-05:002013-12-14T02:01:54.478-05:00A Fragile Body, A Tough Mind<b>12.13.13.</b><br />
<br />
I got great news today. The doctor seems to think that my right hip is actually improving. From my X-rays, he commented that there are signs of revascularization, meaning that the circulation has been restored and the bone is being revitalized. That was the hopeful outcome of having core decompression surgery in the early part of 2012. <br />
<br />
This was very surprising to me, since before my appointment I felt confident that he'd be ready to schedule my next hip replacement. Instead, he offered me a cortisone injection into my joint to possibly relieve the pain. I'd had one in my bursa [a sac adjacent to a joint], but never in the joint. <br />
<br />
I was taken to a room that I had never been in before. It was large and bright with a single table in the middle of the room. Everything was white or silver. It reminded me of a surgical room in a hospital. They monitored my heart rate and gave me a nerve block before injecting me. <br />
<br />
The nurse told me that they don't usually do the injections "on the fly" like that, but the doctor insisted. When she was helping me to prep for the injection, she said "He [the doctor] said you'd be an easy patient. He said your 'tough.'"<br />
<br />
"Tough," I thought, as my mind echoed her unexpected word. I must have let out at least a small smile, though I'm not sure if that was purely mental or if I actually wore it on my face. She asked me to list my past surgeries and medical history. As I recalled something new to add to her list every few seconds, I started to think about it again.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.google.com/imghp" target="_blank" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSTkOZbLEfu8B1AQTkpnaBib3qOTfoJkCwrn70lD5Vf4XbL9tlDvVSJJOH1yNHWt5ZAK6C7l1TWT93H2mkI7IJq4z2AhKC_llpO_IbjRixAAWa2te8X-neV8NX4ksdv_fz31J19KsXDr0s/s320/imagesearch_tough.jpg" /></a></div><i>Tough.<br />
<br />
My doctor, who knows my fragile state better than anyone, called me 'Tough.'</i><br />
<br />
Do me a favor and do a google image search for "tough." [click on the image, type in "tough," and then click the camera icon in the search bar].<br />
<br />
What do you see? Mud obstacles, muscular men, professional fighters, people running races, toned women with 6-packs, Rambo, people lifting weights. <br />
<br />
Are those results what you think of when you hear the word "tough?" For me, the results were expected. When I think of a "tough" person, I do not think of a skinny, frail, disabled person like myself.<br />
<br />
The only thing that struck me as odd was that all of the tough people in the images look so angry. I don't think I saw a single person smiling. Are tough people not supposed to be happy? Are they not expected to smile? I smile. Again, I just don't fit the bill.<br />
<br />
The definition of tough is just about everything my body is not. <br />
<br />
<b>1.</b> strong and durable; not easily broken or cut.<br />
<b>2.</b> not brittle or tender.<br />
<b>3.</b> sturdy; hardy.<br />
<b>4.</b> capable of great endurance.<br />
<br />
My body is not strong. My body is not durable. My body is easily broken and cut. My bones are brittle and tender. My body is not sturdy or hardy. <br />
<br />
But then I got to number 4. I'm not <i>always</i> capable of great endurance, but I have learned to endure. The unpleasantness associated with endurance comes in many forms and circumstances. And for that reason alone, I allowed the word to sink in and I decided to take ownership of it. I actually liked being called exactly what I thought I was not. <br />
<br />
My <i>body</i> is weak. But <i>I</i> am not.<br />
<br />
After my injection, I hopped down off the table so quickly that the nurse asked me to sit back down to make sure my leg was stable. <br />
<br />
"It feels good," I said, as she lowered me back to sitting position.<br />
<br />
I'm not sure if it was the steroid injection or being called "tough" that had me feeling like a Transformer. Perhaps it was both.<br />
<br />
After learning that I wouldn't be able to drive home, I called my hubby to come and get me. By time I was finished, he was in the wait room with my crutches in hand. <br />
<br />
"I don't need those," I said.<br />
<br />
The nurse's eyes read like my mother's, telling me to 'be careful,' but from her smile I read, 'you go girl.' As I walked out of the building with my arm looped in with my husbands, I realized that in those moments, and many other moments that spanned more difficult circumstances, I was tough. When it counts, when my body is not tough, I am <i>still</i> tough.<br />
<br />
I went back to work and soon it was time for my youngest two children to do their holiday performances. My almost-3-year-old [who is built like a linebacker at nearly 35 pounds] ran over to me, and for the first time in more than two years, I lifted him up, rested him on my hip and walked several steps over to my husband without a single limp. I didn't even realize I wasn't limping until my husband told me. I'm so used to walking straight to my husband after lifting my son, because I have to quickly pass him off due to the pain. He's still young enough to want to be held often. And he never seems to give up on me even though I'm sure that he's aware of my limitations by now. But this time, there was no pain. And I held my son until he was too antsy to be held any more. And when I lowered him back to the ground, still no pain. And when I sat on the floor with him in my lap, still no pain. For a long time, these types of interactions, especially with my youngest, have been limited by my pain.<br />
<br />
Only time will tell if the injection will actually help. The numbness was still in effect at the holiday party, but those tiny moments still felt triumphant. And just maybe, being able to look forward to and celebrate the tiny triumphs is exactly what makes me "tough." <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVXxtC05RpIM8uIo8bvcaKeH_bSQ9cil1Lk7nrncWHWkpcZIP-yltIcznEWfobSBSu5RfeSngq3Qjd2p8BJpYyxq8GCKWa9qMrweXYTHA4ONp0AhoEt9DtebEuiuNoJzOvWUBd2dGbgZwA/s1600/tough.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVXxtC05RpIM8uIo8bvcaKeH_bSQ9cil1Lk7nrncWHWkpcZIP-yltIcznEWfobSBSu5RfeSngq3Qjd2p8BJpYyxq8GCKWa9qMrweXYTHA4ONp0AhoEt9DtebEuiuNoJzOvWUBd2dGbgZwA/s320/tough.jpg" /></a></div><br />
Maybe, it's what makes you tough, too.<br />
<br />
Moments like those, though few and far between in recent years, help me to endure.<br />
<br />
Sure, the numbness helped. But so did my mentality.<br />
<br />
Maybe it's time the google image search for "tough" offered a new perspective. Because as of today, my definition of tough has less to do with the body and more to do with the mind, the soul and the spirit. <br />
<br />
<b>"Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed. Make every effort to live in peace with all men and to be holy; without holiness no one will see the Lord."</b> -- Hebrews 12:12-14Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-60355956857588405852013-12-01T02:28:00.001-05:002013-12-01T21:20:44.498-05:00The Neverending Story<b>12.01.13.</b><br />
<br />
If you are looking to read about a young boy named Atreyu who flies on a luckdragon to a magical land called Fantasia, I'm afraid you've come to the wrong place. I didn't mean to mislead anyone, but instead I'd like to offer my real-life neverending journey that starts with me racing through fields of tulips at the age of 32 and continues through to my current state of moving like an 80-year-old at the age of 34. <br />
<br />
OK, so I never actually ran through a tulip field, but if I could go back, I certainly would. I promised an update on my ankle a couple of weeks ago. Better late than never?<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiME1eqSkPgXjG0FesGYBEgIqywBut1j0_Xty2UtqIxIALHoGXemcDjkBwWx9jaxcCyW-b9SGFbeC_qTqpoXAD08rI46VAlZxcx1Yda_388M_HgNhumS7Fi0xaMIzD6DREj8UQOoQDPlUl1/s1600/luckdragon.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiME1eqSkPgXjG0FesGYBEgIqywBut1j0_Xty2UtqIxIALHoGXemcDjkBwWx9jaxcCyW-b9SGFbeC_qTqpoXAD08rI46VAlZxcx1Yda_388M_HgNhumS7Fi0xaMIzD6DREj8UQOoQDPlUl1/s400/luckdragon.jpg" /></a></div>If I consider myself the main character of this story, there are a few things you should know about me in order for this post to play out properly. I have had four surgeries, including a hip replacement, which were a result of developing Avascular Necrosis (bone deterioritation due to a lack of blood supply) in my hips and right shoulder. I'm angry, because I believe that the Mirena IUD triggered my condition, yet there are no trials or studies to confirm nor deny that. I only have my experience and the bits and pieces of information gathered here on this blog. And then there's intuition, I have that, too. <br />
<br />
This blog started as a way to chronicle my experience after being diagnosed, but it grew into mounds of online research that was too overwhelming to bear at times. <br />
<br />
I recently returned to my doctor's office for X-rays on my ankle. The experience was all too familiar.<br />
<br />
<i>Take your clothes off and put this on.</i><br />
<i>Lie down on the table and try not to breathe for a few seconds.</i><br />
<i>Get dressed. Go back to the lobby and wait.</i> <br />
<br />
The doctor looked at my ankle X-rays and stated that he didn't think it was Avascular Necrosis. Instead, he said, it was likely the inevitable outcome of having really terrible bone structure in my ankles. I was born that way. I have no arches. And my feet and ankles are hideous. Always have been. If you have nice, normal feet — I envy you. <br />
<br />
<i>You'll need to see a foot and ankle specialist.</i><br />
<i>You might need to have your feet and ankles rebuilt.</i><br />
<i>But first ...</i> my doctor said I should have another MRI to rule out Avascular Necrosis as the cause of ankle pain, which was causing me to limp [more than I already was] for weeks without any relief.<br />
<br />
I was relieved to hear that he didn't think it was Avascular Necrosis, but nervous that it still needed to be 'ruled out.' If it was AVN, that meant that there was still a larger issue. It would mean that I was still clotting and the blood wasn't reaching my bone. The good thing about all of the damage that was done to my body, was that it was <b>done</b>. Instead of acquiring new damage, I was just repairing the old damage. I could handle that. Also, if it's not AVN in my ankle, that means that I have my first non-Mirena-related diagnosis in two years. In my twisted way of thinking, that's a victory. I really don't want to blame everything on an IUD. I promise. <br />
<br />
So, I scheduled the MRI. And then the ankle pain stopped. <i>That was odd. </i> <br />
<br />
I'm slow to update on this, because now I don't even want the MRI. I know I should 'rule it out' and get it over with, but my ankles doing OK now, so maybe I should just enjoy that while it lasts? If I get bad news, I'll feel compelled to act. But if I don't know, I don't have to do anything. On the other hand, if it is AVN, it will only get worse and I need to catch it early. Even if it isn't AVN, he'll want to refer me for a possible foot re-build. He was talking about rebuilding my ankle using bone from my foot. That sounds unpleasant. So, yep, I just decided. I'm putting this off for now. <br />
<br />
I don't believe it is AVN in my ankle. If it was, I highly doubt the pain would have stopped, instead it would have worsened. Maybe I did something to my ankle and I just don't remember? On any given day, I dodge 30 hot wheels and 5 tiaras on my way out the front door. Or maybe my feet are just severely messed up and I'm just putting off a 're-build' until later, you know, until it's more convenient to have my ankles rebuilt [sense the sarcasm?].<br />
<br />
Ahhhh. Ignorance is ... not really bliss. <br />
<br />
Anywho — I'm still going back to see my doctor in 2 weeks because I also had X-rays done on my right hip and I can feel a second hip replacement growing closer each day. I'm limping. It takes me about 20 seconds to go from sitting to standing, either because of the pain or because my hip locks up or 'pops' when I do. And not the <i>really cool</i> lockin' and poppin' like those hip hop dancers do, but the <i>really bad</i> lockin' and poppin' where you're reminded that your very structure is falling apart each time you attempt to rise to your feet. <br />
<br />
Part of me wants to wait it out, because I don't want to have surgery again. Another part of me wants to get it over with. <br />
<br />
I want to take dance classes for the heck of it and run another 5K just because I can. I want to run through a field of tulips. None of those things are possible in my current condition.<br />
<br />
It's not that I'm not living well — I am. I going and doing, but the limitations are killing me and the pain is annoying. As much as I try to tell myself things are fine the way they are, I still desire more. Maybe that's just greed, I'm not certain.<br />
<br />
And so, for the main character of this post (me!), the conflict is within me. I just need to make another decision. <br />
<br />
And the neverending part is knowing that I will always have to make decisions like this. Even when both hips are replaced, my replacements will need to be replaced one day. My replacement replacements might even need to be replaced. That's a lot of replacing.<br />
<br />
So, my story continues. And the questions constantly looming through it all is 'why?' Why did this happen to me and why have similar things have happened to other women who used Mirena IUD? And why doesn't anyone with the ability to do something about it, actually do something about it?<br />
<br />
Where's my luckdragon when I need him? Perhaps he can take me to a magical land where companies manufacture things without any deception. And perhaps, I'll get a new set of magical hips and ankles while I'm there.<br />
<br />
<i>Not</i> <b>the end</b>.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6757075339059623119.post-3326904593622214222013-10-19T22:36:00.001-04:002013-10-19T23:13:06.145-04:00My Strength and Weakness<b>10.19.13</b><br />
<br />
Along with the mental strength that came from learning to rely on my mind when I simply couldn't rely on my body, came a deep sense of worry. I consider it a weakness.<br />
<br />
While learning to be mentally strong in the face of adversity, I was also realizing some sad truths about how fragile I am — about how fragile we <i>all</i> are.<br />
<br />
The last two years of my life have changed me forever. I'll never be the same, physically or mentally.<br />
<br />
My latest worry involves a new pain that started in my ankle just this past Wednesday, I'm waiting to see my doctor this coming week to determine what it might be. I never did anything in particular to my ankle to injure it. The pain seemed to come out of nowhere, much like the pain in my left hip that kicked off a downward spiral of health issues and surgeries. As much as I want to believe that it is not AVN in my ankle, it very well could be. So, now I'm dealing with pain in my left ankle and my right hip, which is still pending replacement. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvtXF6u7hEPNY3bBRqb0g3-4neTGLisbymzuMBjq-VDU04d9tdIS7xWJCnURj8OdHqxb5TEV7TjSkBNnact_9gr46HiFxnLYCVEvb_UocwhlJCbaoSi7dw2Ivrk6hlRatQCrScc0NnC6Rs/s1600/STRONGWEAK.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvtXF6u7hEPNY3bBRqb0g3-4neTGLisbymzuMBjq-VDU04d9tdIS7xWJCnURj8OdHqxb5TEV7TjSkBNnact_9gr46HiFxnLYCVEvb_UocwhlJCbaoSi7dw2Ivrk6hlRatQCrScc0NnC6Rs/s400/STRONGWEAK.png" /></a></div>There have been times — many times — when I thought the worst. I know this will all seem dramatic. It is. But this is how my mind works now. When I learned that my bones were deteriorating in several places at such fast rates, I thought that there was something bigger happening. I thought I had bone cancer, leukemia or lymphoma, and I still think that at times. <br />
<br />
At one point, I thought I might have cervical cancer and asked for a papsmear despite the fact that my insurance wouldn't cover it. Due to changes in insurance, they would only pay for one pap every five years. I didn't care about the cost, I just needed to know. I've worried about breast cancer. I've worried about blood clots and heart palpitations.<br />
<br />
I've worried.<br />
<br />
I've even worried that I'm worrying too much. Have I become a hypochondriac? I'd like to think not, because my symptoms are real and they stem from real events. Also, my worries, based on symptoms I've experienced, are not far-fetched. I've yet to be tested for most of things I worry about, because I know that even though I worry, I tend to think too much.<br />
<br />
I do not share these things because I want others to worry. I share these things because I want others to understand the downside of the struggles, apart from the disabilities incurred. The upside was the mental strength that I gained; the ability to forge on and better myself in ways I never intended to before my AVN began. I have learned to appreciate all of my remaining abilities. I've learned to appreciate myself from the inside, out.<br />
<br />
When I run into people and they ask how I am doing, it's easy to say "much better." That is the truth. I am back on feet and learning to spend equal amounts of time off of my feet to manage the physical pain. I'm able to work. I'm able to care for my children and be involved in their lives. That is leaps and bounds of improvement compared to last year. <br />
<br />
However, I wouldn't dare go as far as to say I am "all better." My harsh lesson in fragility has affected me more than I even realized a few months ago. Sometimes, I just feel like I'm waiting for the next bad news. For someone else, ankle pain may mean little to nothing. It is likely that most wouldn't assume anything beyond a sprain or inflammation. That is the same non-chalant mentality that I had about my left hip before my AVN diagnosis. I thought it was childbirth-related. I thought it was inflammation. I never could have imagined where that initial pain was headed, and what impact it would have on me and my family. <br />
<br />
I'm afraid that my days of a non-chalant mentalities are gone. I'm afraid that my ankle pain is going to be AVN. <br />
<br />
I still have that inner spark of strength that gets me through. I know how to tap into it when I need it most. I attribute that strength to my faith and my family, and also to myself. <br />
<br />
I've grown strong. But I've also grown weak. At times, it can be a struggle to keep the strong side of scale more weighted than the weak.<br />
<br />
<br />
<b>"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."</b><br />
-- Psalm 73:26<br />
<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-46581401677000132932013-08-07T00:16:00.000-04:002013-08-13T20:06:34.581-04:00Petition for Testing of Mirena and Skyla IUDI've created a petition that requests testing of Mirena and Skyla IUD for a potential connection to autoimmunity and blood clotting. <b>To view and sign the petition, please visit</b>:<br />
<a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting">http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting</a><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDSYLK6iOknozGheDcqW7RBhaDj2h-TLBIQjLFubIzPMu1Sm8llhufWvpsx4ZUudSkEasL2GdpJzlsuQcjomOuWe-rAmRXooIDOO3a5PymvPqB0bv72OAHzBSHLeGygFTxVymjV5uWT6ED/s640/MirenaIUDpetition.jpg" /></a></div><br />
<br />
<center><iframe src="http://petitions.moveon.org/embed/widget.html?v=3&name=mirena-iudskyla-iud-clotting" class="moveon-petition" id="petition-embed" width="300px" height="500px"></iframe></center>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-44114787601328352322013-08-06T20:53:00.000-04:002013-08-06T21:15:14.938-04:00Mirena IUD Lawsuits: Why You May Not Have a Case<b>08.06.13</b><br />
<br />
I've gone off the blogosphere for a bit. I just needed a break after I got the wind knocked out of me pretty hard [figuratively speaking].<br />
<br />
After the Mirena IUD caused the <a href="http://learning2walkagain.blogspot.com/2012/11/the-perfect-storm.html">Perfect Storm</a> within my body, I thought long and hard about a potential lawsuit. I couldn't decide if that was the route I was going to take. I didn't know that it would be worth it in the end. I didn't want to put my life and my experience on the "stand" for others to judge. <br />
<br />
More than a year [plus] after my health went from nearly perfect to absolutely scary, leaving me disabled and living with an autoimmune disease, I decided I'd go for it. I decided it was worth a shot. My initial lawyer seemed convinced I had a case. I had built up a good portion of it here on this blog. That lawyer discussed my case with another well-known lawyer from my area. The lawyer joked that I could call him if I ever needed a law office job. They, and others, referred to me as "Erin Brocovich." <br />
<br />
But clearly, I didn't have the evidence as down-packed as she did. <br />
<br />
The lawyer that I was referred to [because they were more familiar with cases regarding Mirena] reviewed my case. He seemed confident enough, but asked that I sit in on a call with another lawyer in his office who worked autoimmune-related lawsuits regarding breast implants [silicone in breast implants and silicone in Mirena are one in the same]. She concluded that, unfortunately, there was nothing I could do.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting?source=c.url&r_by=8535723" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNkO9Vh2v0jV5wEm6FvnTfOl2BZM77TsTH3UmODjG6nD2qovWkkIt1Wfvxi5Gt8p8egDQSMBNjj_IMD25uhj0TnAKXCn51b1BNXrXTUv711bZX2pqV1MgYHIdLEpgnNu9OvWepJ5KyAu67/s400/Mirenapetition.jpg" /></a></div><br />
For days, those words repeated in my head. <br />
<br />
"There was nothing I could do." <br />
<br />
"There's no clinical trials to prove my case."<br />
<br />
"There was nothing I could do."<br />
<br />
"It's so <i>unfortunate</i>."<br />
<br />
<br />
<b>[SIGN THE PETITION AT]</b>: <br />
<a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting">http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting</a><br />
<br />
I took the news as gracefully as I could and told her that I at least had peace with myself about the whole ordeal. I was confident that Mirena caused me to have Avascular Necrosis and Sjogren's Syndrome. The timeline alone, even minus all of the research I'd done, was telling enough. I told her that I understand that the court system was a complex system. <br />
<br />
An unjust one in this case, I thought, but didn't say aloud. Though I'm sure she knew that all too well.<br />
<br />
The backstory that she shared with me was interesting. Her firm previously represented thousands of women who had autoimmune effects from silicone breast implants. They did studies in their lab and felt confident that they had proof. The scientists witnessed and reported that the silicone had produced an autoimmune reaction.<br />
<br />
In court, the judge said that their data could be biased. And he appointed his own panel of scientists to run tests. That panel found no relation. And the case was dismissed. <br />
<br />
Hundreds of thousands of women with autoimmune reactions and it was all just a ... coincidence?<br />
<br />
Potentially the same number of women who used Mirena IUD and were affected by the silicone in it, but that, too, is just a ... coincidence? <br />
<br />
So, here is the kicker. When I mentioned before that there were no clinical trials to prove my case, I'm speaking of <i>a few studies with opposing results</i>. My fate in a court of law was determined by <i>a few studies with opposing results</i>. Studies that I can't even seem to find record of online beyond this:<br />
<br />
"Only a few studies investigating the risk for VTE with progestin-only contraceptives exist. A recent summary of the first of these 5 published studies concludes that (a) <b>the risk of VTE with progestin-only contraceptives is poorly investigated</b> and (b) that there may be a slightly elevated VTE risk . Since then, a study has shown a statistically significant 3-4 fold increased risk of VTE with injectable progestin-only contraceptives, but no increased risk with progestin-releasing IUD. An additional study also suggests that progestins-only contraceptives may be associated with a higher risk for VTE. <b>While a very recent review article has concluded that “progestogen-only contraceptives are not associated with an increased risk of VTE”, the article did not take reference to the two most recently published studies, references ref 8 and 9; its conclusion is, therefore, not up-to-date</b>." [SOURCE: <a href="http://patientblog.clotconnect.org/2011/02/02/progestin-only-contraceptives-and-blood-clots/">http://patientblog.clotconnect.org/2011/02/02/progestin-only-contraceptives-and-blood-clots/]</a><br />
<br />
Wait ... so there doesn't seem to be a risk, but we aren't really sure? There is <i>one, single</i> study [that I can find] that specifically compares clotting from an LNG-releasing IUD (Mirena) with a Copper IUD. [SOURCE: <a href="http://clinicaltrials.gov/ct2/show/NCT00584610">http://clinicaltrials.gov/ct2/show/NCT00584610]</a> The status of that trial is "unknown" and it appears it hasn't been updated since 2010, with no results to show. <br />
<br />
Do you know what this means? There is not a single, completed clinical trial that shows the potential relationship between an LNG-releasing IUD and clotting. Not a single one.<br />
<br />
So forget the FACT that my blood test revealed clotting <i>just</i> after having Mirena removed. And forget the FACT that months later, my blood tests revealed I wasn't clotting any more. <br />
<br />
Forget the FACT that Avascular Necrosis is caused by clotting. If the blood can't get to the bone, it dies. Forget the FACT that my Avascular Necrosis never spread to my left shoulder after having the Mirena IUD removed. <br />
<br />
Forget the FACT that I never had any autoimmune issues before using Mirena or that, now, I have been diagnosed with an autoimmune disease. <br />
<br />
Where are the clinical trials or studies that research the potential [or in my mind probable] relationship between the silicone in Mirena and autoimmune response? Oh right, there isn't one!<br />
<br />
And guess what that means -- that I, and possibly you, do not have a case regarding autoimmunity and clotting. For now. More importantly, it's not just about having a case. It's about getting answers. It's about peace of mind. <br />
<br />
A word to the wise: Skyla IUD uses the same ingredients and components as Mirena IUD. The only difference is that the daily release amounts of LNG are expected to be lower. No clinical trials about clotting and autoimmune disease for Mirena means no clinical trials about clotting and autoimmune disease for Skyla IUD. <br />
<br />
If you are affected by clotting or autoimmunity with either of these devices, as of now, you have no "proof" as far as a court of law is concerned. It didn't matter what my blood tests showed and how my body reacted specifically to the device. Though the proof seems evident, obvious even, in many cases, your case doesn't stand a chance without a solid amount of studies on these relationships. And those studies simply do not exist. If they do, I've been unable to find them. <br />
<br />
This is why lawsuits against Mirena are focused on IUD perforation. A court of law cannot argue that the IUD migrated into a women's body and had to be surgically removed. <br />
<br />
Unfortunately, I am not Erin Brocovich. I only wish I could be as thorough and had the time to go about town finding all of the answers. But I don't work for a lawyer. I have a full-time job. I have three children. I am in graduate school part-time. <br />
<br />
My time is up to pursue my case in a court of law because of the statute of limitations, which says that I have only two years from the time of insertion to take legal action. That time has come and gone. <br />
<br />
I've been used as "poster child" for adverse effects of "Mirena IUD." My story has shown up on lawsuit website's all over the internet. But the irony of it all is that the one lawyer who could have represented me, didn't. Too much money. Too much time. Not enough data. The outcome was too predictable. <br />
<br />
For me, it was never about money. It was about awareness. It was about holding a company accountable for not providing the proper warnings and doing the proper research. It was about making wrong, right.<br />
<br />
If you believe you have suffered from autoimmune effects from the silicone in Mirena IUD, lawyers probably can't/won't represent you either. If you've suffered from blood clotting from the levongestrel (LNG) used in Mirena IUD, they probably can't/won't represent you. <b>I'm not saying you shouldn't pursue a case or lawsuit.</b> If your life was negatively affected without proper warning, you should do what is best for you. But I wanted you to know what you are going up against.<br />
<br />
We need data. Not just about silicone. Not just about LNG. But specifically, the silicone and LNG used in Mirena and Skyla and if/how they relate to clotting and autoimmunity. <br />
<br />
Now may not be our time. But I do believe our time will come. And I hope I have something to do with it.<br />
<br />
Now the question playing over and over in my head is "What's next?"<br />
<br />
Only time will tell, but we can start with this petition:<br />
<a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting">http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting</a><br />
<br />
<b>If you think that there needs to be more studies/trials about the potential connections of Mirena IUD and Skyla IUD to clotting and autoimmunity, please sign the <a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting">petition</a> and share it with your friends and family. </b><br />
<br />
If you've stuck with me through this entire post, thank you. It's been a while. And I've had a lot on my mind.<br />
<br />
Getting these answers is not about getting rich, or getting revenge. It's just about our right to know. Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6757075339059623119.post-91787591441419377872013-04-04T20:05:00.001-04:002013-04-04T20:15:42.587-04:00I Am Woman, Hear Me Roar<b>04.04.13</b><br />
<br />
Despite having more pain-inducing nerve receptors than a man, I endured childbirth, and then willingly endured it two more times. It's a good thing my body was built to be more flexible. Contrary to popular belief, women are not made of sugar and spice -- our bodies actually release more sulfur than a man's. My liver is smaller, so it has to work harder. Having estrogen means that my body will produce about 8 percent more body fat than a man's. And on top of that, I have less connective tissue and thinner skin, making my fat more visible. <br />
<br />
I am perfectly made. <b>I am woman</b>. <br />
<br />
<a href="http://horacek.com.au/wp-content/uploads/2010/08/04-i-am-woman-hear-me-roar1.gif" imageanchor="1" ><img border="0" src="http://horacek.com.au/wp-content/uploads/2010/08/04-i-am-woman-hear-me-roar1.gif" align="right" /></a>I have an entire reproductive system in my pelvis. I have gonads. They are in my ovaries and they produce eggs. Every month, my unfertilized eggs dry up and leave my body through my uterus. About a week before that happens, I experience acne, bloating, fatigue, backaches, sore breasts, headaches, constipation, diarrhea, food cravings, depression, irritability, and difficulty with concentrating or handling stress. Meanwhile, a group of lipids called prostaglandins, cause me to have severe abdominal cramps for a few days. When my eggs <i>are</i> fertilized, I grow a human inside of my body over the course of about 280 days, and then I push it out and feed it with my boobs. I have some pretty amazing parts, but they do come with great risks -- some of those risks could lead to infertility, miscarriage or the loss of a child. We, unfortunately, don't have any special parts built to handle the unexpected reality of such things.<br />
<br />
With or without child. <b>I am woman</b>. <br />
<br />
For those of us who do not want a child, or additional children, we get to choose from a wide range of contraception, sometimes prescribed without important warnings that could save us from negative, life-altering effects. And then there's abstinence, which is a great choice for an unmarried woman, but not really a choice for a married one. There's the option of having our tubes tied or our husband's having a vasectomy, if they can be convinced that they can survive a weekend of pain and anguish. Or we can just be like Michelle Duggar, and maybe then we could have enough children to open up a small family-run carnival. The idea of having that many children is so far-fetched that it might just get you your own reality show. Not to mention, a choice to reproduce without any restraint would be made difficult by a world that is tailored for a family of four. <br />
<br />
I make difficult decisions. <b>I am woman</b>. <br />
<br />
I've got plenty of nerve and loads of endurance. I smell like roses, despite my sulfur. I have the thickest, thinnest skin you could imagine. I have fat and I have gonads. <br />
<br />
I am not bitter. I am proud. <br />
<br />
<font size="4">I am woman. Hear me roar.</font><br />
<br />
<br />
<br />
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6757075339059623119.post-71447207675992218702013-02-27T15:27:00.000-05:002013-08-13T19:52:08.130-04:00Skyla & Mirena: 2 IUDs in a Pod?<b>02.27.13</b><br />
<br />
Oh, how my heart aches thinking about all the unexpected aches that more women will experience from Bayer's newest contraception, which appears to be Mirena, Jr. <br />
<br />
The FDA recently approved a new IUD, manufactured by Bayer. It's called Skyla. <br />
<br />
It's a pretty name. Sounds harmless. The name Skyla is Dutch in origin. It means scholar, or shield of knowledge.<br />
<br />
So, for name's sake -- let's shield ourselves with some knowledge. <br />
<br />
"The [Skyla] reservoir is covered by a semi-opaque silicone membrane, composed of polydimethylsiloxane and colloidal silica." [SOURCE: <a href="http://www.rxlist.com/skyla-drug.htm">http://www.rxlist.com/skyla-drug.htm</a>]<br />
<br />
Same as Mirena, Skyla uses silicone, which is known to cause autoimmune issues that will cause your body to attack itself. The result of that can only be left to the imagination. It can affect your body in countless ways and possibly cause permanent damage, including lifelong autoimmune disease. In my case, I was diagnosed with Sjogren's Syndrome (an autoimmune disease) after using Mirena. <br />
<br />
Also like Mirena, the active ingredient in Skyla is levonergestrel (or LNG), which is a hormone (a second generation synthetic progestogen). It's no secret that hormones are linked to an increase in clotting. But in my opinion, it is not something that is discussed enough. <br />
<br />
Just six months after having Mirena inserted, clotting caused me to develop Avascular Necrosis (bone deteroriation due to lack of blood supply) in my hips and shoulder. You can read <a href="http://learning2walkagain.blogspot.com/p/my-story.html">MY STORY</a> to learn more about the serious effects AVN has had, and still has, on my life. <br />
<br />
The difference between Skyla and Mirena is that Skyla is intended to release 13.5 mg of LNG, while Mirena intends to release 52 mg of LNG. Skyla seems the better option, having less hormones involved. Though, I would <b>never</b> go out far enough on a limb to suggest to any woman that a hormonal contraception is a good choice. <br />
<br />
In my opinion, the daily release amounts of LNG cannot be trusted. <a href="http://learning2walkagain.blogspot.com/2012/05/mirena-writings-on-wall.html">One study I previously shared</a> showed that women with low body weight or high SHBG (Sex hormone-binding globulin) levels, increased amounts of LNG were released. That same study shared that, in these cases, the LNG could also become systemic (meaning that it affects the entire body, and not just the uterus, as it is intended to do). <br />
<br />
Skyla, unlike Mirena, is being marketed to women who have not had children. It is also marketed as a 3-year IUD, whereas Mirena is marketed as a 5-year IUD. <br />
<br />
As I've stated before in my blog, I am not a doctor. I only wish for women to educate themselves about the harmful possibilities that could affect them. I always advise women to take a close look at their family medical history. Based on my experience and research, if autoimmune disease or clotting is a your in family health profile, I would suggest avoiding Mirena and Skyla altogether. There are other warnings provided by Bayer -- please read those also.<br />
<br />
If you are able to explore other options for birth control, I'd suggest staying away from synthetic hormones. They are not good, natural hormones. <br />
<br />
Above all, make an educated choice. I did not, and because of that, <a href="http://learning2walkagain.blogspot.com/2012/06/then-now.html">my health profile</a> went from nearly perfect to just plain scary. <br />
<br />
Don't be fooled by a pretty name. It's what's on the inside that counts.<br />
<br />
Please visit this link to learn more: <a href="http://dangersinmedicine.wordpress.com/2013/01/25/mirena-iud-lawsuits-dont-deter-bayer-from-getting-new-iud-approved/">Mirena IUD Lawsuits Don’t Deter Bayer From Getting New IUD Approved</a><br />
<br />
<center><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTcv2Pq_ZZE-ocyswXVFQjYF4SDHAr-EVdaM4LJ3rJzC11YDXPq1Jo3K90U2fqrbYHa0M5bfRcT11aAAC30FbD0_MXMH7sxTWpvOG0zv_TvqIksUQCyqkhoU-myUUkCwBQ9H9MpwTu3oQf/s1600/skyla.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTcv2Pq_ZZE-ocyswXVFQjYF4SDHAr-EVdaM4LJ3rJzC11YDXPq1Jo3K90U2fqrbYHa0M5bfRcT11aAAC30FbD0_MXMH7sxTWpvOG0zv_TvqIksUQCyqkhoU-myUUkCwBQ9H9MpwTu3oQf/s320/skyla.jpg" /></a></center><br />
<center>Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD:<br />
<a href="http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/">http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/</a><br />
<iframe src="http://petitions.moveon.org/embed/widget.html?v=3&name=mirena-iudskyla-iud-clotting" class="moveon-petition" id="petition-embed" width="300px" height="500px"></iframe></center>Unknownnoreply@blogger.com22tag:blogger.com,1999:blog-6757075339059623119.post-65108791767781260392013-02-11T16:56:00.000-05:002013-02-11T16:56:36.290-05:00Being Handicapped: Lessons Learned<b>02.11.13</b><br />
<br />
My handicapped decal expired on the last day of January. I attempted to live without it, but I caved today [a mere 11 days later] and called my doctor for an extension (which he predicted I would do). I really wanted to let the decal go, but the truth of it is ... I still need it with my pending hip replacement for my right hip, which is causing me a lot of pain. I had several reasons for wanting to give up the decal -- one being less judgement from others. I thought this would be a good opportunity to share some lessons learned with you all about being 'handicapped.'<br />
<br />
<b>1. If people treated everyone the way they treated me when I was <b>obviously</b> disabled, the world would be a happy place.</b><br />
<br />
Seriously, I have never seen so many smiles or seen such kind actions from strangers as I did when I used a wheelchair or an aide. People will literally hop out of your way and apologize when they weren't even in the way to begin with. They will hold doors for an entire minute, waiting for you. They will let you cut in line. They will even be sweet to your misbehaving children. Just about everyone would smile at me. One time, a woman even stopped and asked if she could pray for me. It was great to be reminded that people cared. I'm still the same person, but now that I can walk without an aide -- strangers aren't nearly as nice to me. I actually think of this when I'm in public now. I try to treat everyone with the same type of kindness I was shown.<br />
<br />
One of my favorite quotes is: "Be kinder than necessary. Everyone you meet is fighting some sort of battle."<br />
<br />
Man, that rings true. Just because you can't visibly see what a person is dealing with, doesn't mean that there isn't more there. Let's be kind to one another.<br />
<br />
<b>2. When you pull into a handicapped parking spot, people will watch you intently.</b><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkGHdp-h3Myrrpr0O929Gf5ZVycJlZkTbCV-aP2JbZ-R8gzJoK_nF6KbRl3La7SWSjNf0PbymwwAcknJ8bu7jM6l645v3QACDchay53uKmfGAKMLgC4HX2wEVfPN_zxoBJyX8-Ocil4rk/s1600/parking-in-handicap-parking-spot.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="320" width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUkGHdp-h3Myrrpr0O929Gf5ZVycJlZkTbCV-aP2JbZ-R8gzJoK_nF6KbRl3La7SWSjNf0PbymwwAcknJ8bu7jM6l645v3QACDchay53uKmfGAKMLgC4HX2wEVfPN_zxoBJyX8-Ocil4rk/s320/parking-in-handicap-parking-spot.jpg" /></a></div>I park. I hang my handicapped decal from my rear view window. I look around, and more often than not, someone is watching. I don't know if they are just plain curious about what my handicap is, or if they are waiting to make sure I am <i>actually</i> handicapped. Either way, they wait and they watch. Just the other day a couple pulled into a spot next to me. I had just parked and hadn't hung my decal yet, because I was getting some papers ready to take with me. I could feel them staring at me so I looked over and sure enough, they were. I hung my decal and got out of my car and smiled at them. I'll keep these experiences in mind, too, in the future. I'll give people the benefit of the doubt and trust that if they are parked in a handicapped spot, it's because they should be. If they are parking illegally, let the cops handle it by giving them a ticket and a fine. <b>It's not your job [or mine] to determine who is really handicapped and who is not</b>. It's also intrusive to ask a stranger about their condition.<br />
<br />
What people need to understand is that handicapped decals do not necessarily mean that person should be in a wheelchair or have any difficulty walking. They may <i>appear</i> absolutely normal, but they could be fighting an invisible illness that dries out their organs, causes pain, constant dizziness, nausea or brain fog. There are hundreds of autoimmune diseases that affect people in different ways. Possibly, this is a problem created by the image on the decal itself. Regardless, we should give everyone with a handicapped decal the benefit of the doubt. It's the right thing to do. <br />
<br />
<b>3. Accessibility is a major issue.</b><br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRUq3yQz6T8cpv9NgF7jflqY9miJoJyzrWCBeV-eDb0D5FoqH9l6QK05EUsWHj5OMi8SAB7_RVJ8QWOvk6Zl4BNW-Q8FKyrRUZQ0L12_XxmjSNn67tA4XtCIAyoMQCH1NQiv9ftkXZxdql/s1600/inaccessible.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="261" width="283" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRUq3yQz6T8cpv9NgF7jflqY9miJoJyzrWCBeV-eDb0D5FoqH9l6QK05EUsWHj5OMi8SAB7_RVJ8QWOvk6Zl4BNW-Q8FKyrRUZQ0L12_XxmjSNn67tA4XtCIAyoMQCH1NQiv9ftkXZxdql/s320/inaccessible.jpg" /></a></div>First, think about all of the places you go within one day. Work, a public restroom, to a sports game, the store maybe? At work, cubicle walls made it nearly impossible to maneuver in a wheelchair. Racks inside stores are placed way to close together. Graveled and grassy terrain for sporting events are not user-friendly. Doors become your worst enemy -- Most do not have buttons that will automatically open the door for you or if they did, they didn't work (trying to open a door, while reversing a wheelchair and then getting through a door before it closes on you is not easy -- especially without lots of practice). And stairs, forget about it. You'd be amazed at how many places are only accessible by stairs. In order for increased independence for disabled people, accessibility HAS to improve. I can't help but to notice these things still. Even though I'm walking now, I will report anything I notice to a store manager or employee -- kindly, of course. <br />
<br />
<b><br />
4. You can't expect people to understand what you are going through.</b> <br />
<br />
Daily life can be exhausting. It was for me, and some days, it still is. When I wake up in pain, I almost instantly become overwhelmed by everything I need to do that day. The simple things, like picking up milk from the store or just taking a shower, become very difficult things. And most difficult of all, no one really understands what you are going through. More often than not, the people in your life cannot "relate." People don't always understand your decisions when they don't understand your condition. They might even label you as "lazy" [that one hurts]. <br />
<br />
To gain a better understanding of others who are handicapped or living with an autoimmune disease, or anything else affecting their quality of life, please read "The Spoon Theory."<br />
<a href="http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/">http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/</a><br />
<br />
<br />
<blockquote style="border: 2px solid #666; padding: 10px; background-color: #ccc;"><center><b>The Spoon Theory</b><br />
by Christine Miserandino<br />
<br />
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.<br />
<br />
<br />
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?<br />
<br />
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.<br />
<br />
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.<br />
<br />
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.<br />
<br />
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.<br />
<br />
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.<br />
<br />
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?<br />
<br />
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.<br />
<br />
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.<br />
<br />
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.<br />
<br />
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.<br />
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When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.<br />
<br />
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”<br />
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Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.<br />
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After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”<br />
<br />
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.<br />
<br />
© Christine Miserandino</center><br /><br /></center></blockquote><br />
Certainly, I've learned <b>many</b> more lessons than this. But these are the ones that have stuck out for me. As I've said many times throughout my blog, perspective is a powerful thing. I hope that one day I can get past the need to use a decal. Unfortunately, I'm not there yet. And I'm afraid you all are just going to have to take my word for it. <br />
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Do you have others to add? Feel free to leave comments or your own 'lessons learned' below. <br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6757075339059623119.post-30192131873104747252013-01-15T21:19:00.000-05:002013-01-16T22:15:10.811-05:00Flu Vaccine or No Flu Vaccine? That is the Question.<b>01.15.13</b><br />
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"So far this season, more than 2,000 have died in the U.S. of flu-related complications, a number which has "pushed the illness past the 'epidemic' threshold." " [SOURCE: <a href="http://thestir.cafemom.com/healthy_living/149564/flu_epidemic_2013_what_you">http://thestir.cafemom.com/healthy_living/149564/flu_epidemic_2013_what_you</a>]<br />
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It definitely doesn't help that my husband and I recently watched "Survivors" on Netflix. It's about a group of people who survived a horrible epidemic, which started out much like the flu does each year.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8Fllppdzh95JGBvs0WUjFcTawUoi2oeNWnjJbGb456K-5Aua9bLqmvz4yRRY8JrWimjkRBA5la5NTgwUi8uWe4-Bkho6t1cAkxJZhlHxCwWM45CatTJ1Atf5rPINiebjSSbv0E9veKu8O/s1600/elf.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="400" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8Fllppdzh95JGBvs0WUjFcTawUoi2oeNWnjJbGb456K-5Aua9bLqmvz4yRRY8JrWimjkRBA5la5NTgwUi8uWe4-Bkho6t1cAkxJZhlHxCwWM45CatTJ1Atf5rPINiebjSSbv0E9veKu8O/s400/elf.jpg" /></a></div>Unless you and your entire family can stay indoors and isolate yourselves from the rest of the world, you run the risk of getting the flu. <br />
<br />
As a mom, I sometimes do get the urge to isolate my children. There is nothing worse than seeing your child sick or in pain. I have three children, and my youngest two are still in daycare. My children are constantly at risk of being exposed to infections and germs. <br />
<br />
But I also believe they have built up stellar immune systems because of that. <br />
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Every year, when flu season rolls around, I have to ask myself: "Flu Vaccinations or No Flu Vaccinations?"<br />
<br />
This is the first year that my children did not receive the flu vaccine. Since my own run in with bad health, which caused some distrust in medical professionals and medicine in general, I've really started to question things. <br />
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Still, I wonder sometimes if I'm just being a bit paranoid.<br />
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My children do receive most other vaccinations. I try to space them out in case they have a reaction to any of them. My concern with the injected flu vaccine is that it is the <i>only</i> childhood vaccine that contains thimerosal, a mercury-based preservative.<br />
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Thimerosal came into the limelight when a physician in England claimed to have evidence showing a relationship between autism and a combination of childhood vaccines, which formerly contained thimerosal. <br />
<br />
"While no studies showed a link between any harmful side effects and the thimerosal in vaccines, the American Academy of Pediatrics and the Public Health Service agencies decided to remove thimerosal from childhood vaccines in 1999." [SOURCE: <a href="http://www.everydayhealth.com/autism/vaccines-autism.aspx">http://www.everydayhealth.com/autism/vaccines-autism.aspx</a> <br />
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But it still remains in the injected flu vaccine. <br />
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As far as the link between thimerosal and autism, I'm neither completely sold or shut off to the idea. While scientific evidence debunks the connection, I believe that there are always exceptions ... that in certain children or adults, their bodies will react a certain way to any sort of chemical that is put in their body. <br />
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"For Gary Weitzen, executive director of Parents of Autistic Children (POAC) in East Brick, N.J., the research doesn't explain why his son began showing the signs of autism almost immediately after his 18-month childhood vaccines.<br />
<br />
Weitzen tells stories of how his happy, boisterous 18-month-old boy would play peek-a-boo with the little old ladies who sat behind them in church every Sunday. "He would just erupt in joyous laughter," he says of his son's exuberant personality.<br />
<br />
One Friday, the happy little boy got his shots and immediately got sick. "He never played peek-a-boo again," says Weitzen."<br />
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It's a compelling case, and I have to say that I can relate. There isn't any medical professional who will outright tell me that Mirena is the cause of my disabilities, but I'm pretty convinced that it is -- especially because the bone deterioration began after having it inserted, and stopped after having it removed. <br />
<br />
Doctors can develop theories, but they can't always explain causes in totality, because the human body is a complicated mix of processes. It's difficult to pinpoint causes in some cases. And unfortunately, no one knows the cause(s) of autism. <br />
<br />
I know what's it like to want to know a cause ... to want to know 'why?' <br />
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But to be clear, autism isn't my big concern with thimerosal. <br />
<br />
According to Julia A. McMillan, MD, director of the pediatric residency program at Johns Hopkins Children's Center in Baltimore, there have been studies showing that methyl mercury, found in nature and even in many fish that we eat, can have harmful side effects resulting in intellectual and mental health problems. [SOURCE: <a href="http://www.everydayhealth.com/autism/vaccines-autism.aspx">http://www.everydayhealth.com/autism/vaccines-autism.aspx]</a><br />
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"A report published in the American Journal of Public Health, found that people who said they couldn't perform everyday tasks or engage in social and leisure activities because of a mental illness increased from 2 percent in 1999 to 2.7 percent in 2009. That increase amounts to nearly 2 million more people disabled by mental distress in the past decade, the report said." [SOURCE: <a href="http://abcnews.go.com/Health/reporting-mental-illness-rise-fewer-seek-treatment-study/story?id=14585730">http://abcnews.go.com/Health/reporting-mental-illness-rise-fewer-seek-treatment-study/story?id=14585730]</a><br />
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You really have to wonder, what's causing this increase in mental illness? I'm not saying flu vaccines are the cause, but I do have to question whether or not they could be a contributor. I think there are enough 'toxins' in plenty of other things that humans use and consume to help account for the rise in mental illness. <br />
<br />
And yes, thimerosal is a toxin -- at least, according to Wikipedia it is.<br />
<br />
"Thiomersal is very toxic by inhalation, ingestion, and in contact with skin (EC hazard symbol T+), with a danger of cumulative effects. It is also very toxic to aquatic organisms and may cause long-term adverse effects in aquatic environments (EC hazard symbol N).[10] In the body, it is metabolized or degraded to ethylmercury (C2H5Hg+) and thiosalicylate.[4]<br />
Few studies of the toxicity of thiomersal in humans have been performed. Cases have been reported of severe poisoning by accidental exposure or attempted suicide, with some fatalities.[11] Animal experiments suggest that thiomersal rapidly dissociates to release ethylmercury after injection; that the disposition patterns of mercury are similar to those after exposure to equivalent doses of ethylmercury chloride; and that the central nervous system and the kidneys are targets, with lack of motor coordination being a common sign. Similar signs and symptoms have been observed in accidental human poisonings. The mechanisms of toxic action are unknown." [SOURCE: <a href="http://en.wikipedia.org/wiki/Thimerosal">http://en.wikipedia.org/wiki/Thimerosal]</a><br />
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Here is a helpful article about requesting and ensuring a mercury-free injected flu vaccine, if it is in supply at your doctor's office: <a href="http://www.metrokids.com/MetroKids/January-2010/Should-You-Insist-on-a-Mercury-Free-Flu-Shot/">http://www.metrokids.com/MetroKids/January-2010/Should-You-Insist-on-a-Mercury-Free-Flu-Shot/</a> <br />
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When the doctor's office opens back up tomorrow, I'm going to check with my pediatrician to see if they have mercury-free flu shots available. I <i>might</i> consider the injection without the mercury ... <i>might</i>.<br />
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The nasal flu vaccine, FluMist, does <b>not</b> contain thimerosal. However, it is not recommended for my youngest son, because he is under 2 years of age, and because he has a history of recurrent wheezing. <br />
<br />
I could get the FluMist for my other two children, but I'm just not convinced that I should. <br />
<br />
Unlike the flu shot, the nasal spray flu vaccine does contain live viruses. However, the CDC says that the viruses are attenuated (weakened) and cannot cause flu illness. But the listed side effects include runny nose, headache, wheezing, vomiting, muscle aches, and fever. So, I'm supposed to make my child ill for a vaccine that might not even prevent them from getting the flu? <br />
<br />
Something about voluntarily giving my child a live virus does not sit well with me. <br />
<br />
I would love to hear your opinion about why you do or don't allow your children to receive the flu vaccine? I'm not interested in a debate, because I'm still trying to be open-minded about the whole thing. I'm still trying to develop a solid opinion about the flu vaccine. Maybe I never will. <br />
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Also, I should probably mention that one of my three children has contracted the flu this season so far. We also had a quick, 24-hour stomach bug that went through our family, but it was not the flu. I also did not receive the flu shot this year. <br />
<br />
Here is an interesting article that a co-worker shared, which explains the differences between the flu and other sicknesses that are floating around:<br />
THE NO-NONSENSE, NON-ALARMIST, ESSENTIAL GUIDE TO THE FLU --<br />
<a href="http://gokicker.com/2013/01/11/the-no-nonsense-non-alarmist-essential-guide-to-the-flu/">http://gokicker.com/2013/01/11/the-no-nonsense-non-alarmist-essential-guide-to-the-flu/</a> [Image credit: gokicker.com]<br />
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And below is a photo that I saw on Facebook of a manufacturer's label on a flu vaccine for adults [Source: <a href="http://www.facebook.com/photo.php?fbid=474144399315789">http://www.facebook.com/photo.php?fbid=474144399315789</a>]. The fine print reads: "There have been no controlled trials adequately demonstrating a decrease in influenza disease after vaccination with FLULAVAL."<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7raYSigt_Qov_zgbQX3bz6q7UEjWNnapVASqKimoH31I5cMxvU6Dull-kRDjEeVc1d4Ez6m2nuKbFihza1rsYnmkf4zT3knwyvZauLck7iENWhyvmWjmbk9_-7_UTQ8Hx0HxxssY9AB-M/s1600/306521_474144399315789_482933918_n.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7raYSigt_Qov_zgbQX3bz6q7UEjWNnapVASqKimoH31I5cMxvU6Dull-kRDjEeVc1d4Ez6m2nuKbFihza1rsYnmkf4zT3knwyvZauLck7iENWhyvmWjmbk9_-7_UTQ8Hx0HxxssY9AB-M/s400/306521_474144399315789_482933918_n.jpg" /></a></div><br />
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"...I pray that you may enjoy good health and that all may go well with you, even as your soul is getting along well." -- 3 John 1:2<br />
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6757075339059623119.post-88935195105199953102013-01-12T17:34:00.000-05:002013-01-13T20:21:14.945-05:00Jot 'Em Down, Scratch 'Em Off<b>01.12.13</b><br />
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Last year, while sitting around in all of my boring, handicapped splendor, I jotted down some things that I've always wanted to do. I took that a little further by posting a <a href="http://learning2walkagain.blogspot.com/p/my-bucket-list.html">To-Do List</a> on my blog. I guess that way, I could hold myself accountable.<br />
<br />
It was about more than just jotting some things down ... it was all about being ABLE to scratch them off.<br />
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Traditionally, it's called a 'Bucket List,' but I thought that a 'To-Do List' sounded somehow better -- like there was some sort of urgency to them. I don't want them to just sit in a bucket in anticipation for my passing; I want to them to be present, actionable items. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif4M9gsCgU9qipyvaDJ4gKRbJtJenFWkn96o9Ro9GNrqI83ph3o7jx5AIpor3o5mUhWOSdcBXprFwVwClTNzYtsp0286QWkHCrlPsRf_XYrPK3oSrdZE43ga83ao6w6orkNyKm2KggKoUl/s1600/todolist.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="266" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif4M9gsCgU9qipyvaDJ4gKRbJtJenFWkn96o9Ro9GNrqI83ph3o7jx5AIpor3o5mUhWOSdcBXprFwVwClTNzYtsp0286QWkHCrlPsRf_XYrPK3oSrdZE43ga83ao6w6orkNyKm2KggKoUl/s400/todolist.jpg" /></a></div>Last year was all about survival and recovery. I had to get through four consecutive surgeries and get back to a place where I could physically take care of my family again. I was so focused on my recovery that I was left with little to no time to do the things that I <i>really</i> wanted to do.<br />
<br />
I just needed to get better.<br />
<br />
But now, I have. I still have a pending hip replacement ... which I'm thinking could happen this year. But I'm back on my feet and I've got things <a href="http://learning2walkagain.blogspot.com/p/my-bucket-list.html">To-Do</a>! <br />
<br />
I guess you could say that last year lit a fire under my butt and this year, I'm jumping into action.<br />
<br />
Why? Because I can, that's why!<br />
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<ul><li>FIRST -- During my recovery I got back in touch with a long lost friend -- my sewing machine. I did a lot of sitting, because for much of my year, it's all I could do. I started experimenting with some fabric children's books. A few weeks ago I had a unique product epiphany and I'm planning to <b>open up my own Etsy shop</b> soon with it. It's something I've always wanted to do. I haven't updated my blog in about two weeks, because I've been so busy trying to get some stuff ready for my store. Stay tuned for more information about that.</li>
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitnc99ErZzdydhMH8sP083QH5zQSO6r81rMWtp9aIvbLmjStguVD5xF37Lh5eD5xBiNV2a-Lr3egHotf437VAoYIHnnE_Vt0SZg5EnqQ4CfJFrZYtG1QKaMRQO8NE8GBjqcC0ua0IQLDSi/s1600/atlantis.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitnc99ErZzdydhMH8sP083QH5zQSO6r81rMWtp9aIvbLmjStguVD5xF37Lh5eD5xBiNV2a-Lr3egHotf437VAoYIHnnE_Vt0SZg5EnqQ4CfJFrZYtG1QKaMRQO8NE8GBjqcC0ua0IQLDSi/s320/atlantis.jpg" /></a></div><li>SECOND -- My husband and I are planning a trip to Atlantis in the Bahamas. We're looking online and working out logistics, but it's a MUCH-needed trip for us, and I'll get to knock two things off of my TO-DO List ... <b>swimming with dolphins</b> and <b>going down the big water slide at Atlantis</b>. We also plan to go snorkeling, and we'll probably spend some time in the casino, too. Who knows ... maybe we'll hit the jackpot!</li>
<li>THIRD -- I've applied to a couple of Master's programs. This one is a little bittersweet, because it's something I really want to do, but I'm not going to lie ... the idea of going back to school worries me a little with working full-time, raising 3 children who are very involved in different activities, and opening up an Etsy store. I definitely want to <b>get my Master's</b>, but I hope it isn't going to send my life into total chaos. Anywho - I've applied and plan to start on a part-time basis at some point this year. </li>
<li>FOURTH -- We're going to take a <b>hot air balloon ride</b> over the Shenandoah Valley this year! </li>
<li>FIFTH -- This is more of a hopeful, but not guaranteed. I'm really hoping to <b>publish my 2nd children's book</b> this year. I've been saying that for four years now, but I really hope I can pull it off this year. I published my first children's book in 2007. Since then, I've had two more children and four surgeries. In order to publish a book, I need to have money to publish and the time to promote. And I've been low on money and time lately. But if I managed things better, I could totally do it. It's a great book and I've been wanting to publish it for some time now. For more information about my first short story and activity book for children, visit my author website at <a href="http://www.sissyDscooter.com">www.sissyDscooter.com</a></li>
</ul><br />
In October of last year, I managed to scratch off <a href="http://learning2walkagain.blogspot.com/2012/10/the-color-run-5k.html">The Color Run (5K)</a> from my list, which was HUGE for me. In fact, reaching that goal is what inspired me to, not only set, but reach new ones. <br />
<br />
It's possible that I could surprise myself and scratch a few other things off of my <a href="http://learning2walkagain.blogspot.com/p/my-bucket-list.html">list</a> - like <b>winning a gold medal at the Lineberry Olympics</b> this summer, or <b>finding a series that I enjoy reading more than the Hunger Games</b>. I might even add some more To-Dos. But only time will tell.<br />
<br />
I hope to teach my children to celebrate life -- to set dreams and goals and make them happen -- <i>no matter the circumstance</i>. And I don't mean in a careless YOLO kind-of-way, I'm talking about <i>really</i> experiencing life outside of the hustle and bustle of every day shenanigans. <br />
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So, watch out <a href="http://learning2walkagain.blogspot.com/p/my-bucket-list.html">TO-DO List</a> ... I'm coming for you! <br />
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I'm going to be a good patient and take my doctor's advice: "<a href="http://learning2walkagain.blogspot.com/2012/11/dont-stop-livin.html">Don't Stop Livin'</a>"<br />
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<i>"And my God will meet all your needs according to the riches of his glory in Christ Jesus."</i> -- Phillipians 4:19<br />
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6757075339059623119.post-20782217650054927642012-12-27T10:56:00.000-05:002012-12-28T23:22:10.219-05:002012: Year In Review<b>12.27.12</b><br />
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When I saw the idea to do a '2012: Year in Review' on <a href="http://www.shaneprather.blogspot.com">Shane's blog,</a> I was alllll about it.<br />
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In September, I did a <a href="http://learning2walkagain.blogspot.com/2012/09/my-year-in-review-92011-92012.html">Year In Review [from 9/2011-9/2012]</a>, which focused on my diagnosis and recovery. But in this review, I'd like to share some other things, too, because there is more to me [and my blog] than what was included in that list.<br />
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This year has been completely filled with ups, downs, ins, outs, everything sideways and in between! I started my blog in January, so what a perfect way to sum up, easily, the most 'eventful' year of my life.</center><br />
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In <b>JANUARY</b>, I was just learning about my diagnosis and had not yet come to face surgery or recovery. It's so hard for me to even believe that I wrote that just a year ago.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/01/short-term-crisis-long-term-benefits.html" target="_blank">Short-term Crisis, Long-term Benefits</a><br />
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In <b>FEBRUARY</b>, I had my first corrective surgery. I was still getting the hang of blogging, but one of my favorite posts is the one I wrote following my first surgery. <br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/02/stuffed-animals-squishy-bones.html" target="_blank">Stuffed Animals and Squishy Bones</a><br />
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My favorite post from <b>MARCH</b> reminds me of how tough recovery was. And it is also a great reminder of HOW much I have to be thankful for.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/03/point-to-point-z.html" target="_blank">Point A to Point Z</a> <br />
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In <b>APRIL</b>, I learned to walk again on my 33rd birthday. That same week, my youngest son learned to walk for the first time.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/04/final-countdown.html" target="_blank">The Final Countdown <br />
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In <b>MAY</b>, I received an unexpected hip replacement and became a bionic woman!<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/05/blood-transfusions-titanium-confusions.html" target="_blank">Blood Transfusions & Titanium Confusions</a><br />
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In <b>JUNE</b>, after a tornado hit our town, I had some thoughts about life, interrupted. <br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/06/life-interrupted.html">Life, Interrupted</a> <br />
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In <b>JULY</b>, we traveled to Florida for my husband's annual Olympic-themed family reunion. It's always a highlight of my year!<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/07/let-games-begin.html" target="_blank">Let The Games Begin!</a> <br />
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In <b>AUGUST</b>, I decided to be bold and talk about how I, never once, walked alone.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/08/never-once.html" target="_blank">Never Once</a> <br />
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In <b>SEPTEMBER</b>, I got the 'middle school blues,' when my oldest son started the sixth grade.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/09/the-middle-school-blues.html" target="_blank">The Middle School Blues</a> <br />
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In <b>OCTOBER,</b> I completed a Color Run (5K), the happiest 5K on the planet!<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/10/the-color-run-5k.html">The Color Run (5K)</a> <br />
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In <b>NOVEMBER</b>, I finally felt like I had answers about my health.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/11/the-perfect-storm.html" target="_blank">The Perfect Storm</a> <br />
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In <b>DECEMBER</b>, I revealed some personal [but important] details about my life, and I'm glad I did.<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/12/the-greatest-gifts-come-in-small.html">The Greatest Gifts Come in Small Packages</a> <br />
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Oh, and a bonus for <b>DECEMBER</b> was that we not only survived the <b>end of the world</b>, but we also survived the <b>Poopacolypse</b>!<br />
<b>[Read all about it]</b>: <a href="http://learning2walkagain.blogspot.com/2012/12/poopacolypse-2012.html">Poopacolypse 2012</a><br />
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Like I said ... it's been eventful ... but it's also been FUN and an important string of important life lessons. <br />
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Thanks for visiting my 2012 Year In Review!<br />
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Happy New Year to you & yours! May each year be better than the last!<br />
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Unknownnoreply@blogger.com17tag:blogger.com,1999:blog-6757075339059623119.post-6361600207777445202012-12-23T23:08:00.001-05:002012-12-25T00:00:31.208-05:00The Greatest Gifts Come in Small Packages<b>12.23.12</b><br />
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I saw this photo floating around on Facebook of babies who are born at Middle Tennessee Medical Center, and placed into an oversized Christmas stocking.<br />
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It struck me deeply on many different levels. <br />
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As I looked at these babies, cuddled up innocently in the most appropriate of wraps, I first thought about what a gift from God my own children are. But then, I thought about myself. <br />
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That's because soon after my own birth in April of 1979, I was placed into the loving arms of my parents, who I have a hard time ever referring to as my "adoptive parents." That terminology does them no justice. They are, and will always be "my mom and dad."<br />
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I couldn't have asked for a greater pair of arms to be placed into. It was as if God knew exactly who I needed when I was just a young "stocking." <br />
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I could go on and on about the amazing experiences they've provided me with, or the loving home they built, or the amount of patience and kindness they have shown -- and still show -- through the years. <br />
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Growing up, I never thought much about the fact that I was adopted, because I had no reason to. It was a closed adoption, and beyond some comments made here and there by family members, it wasn't something that was discussed.<br />
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I realize that everyone is different, but I preferred it that way. I have always known that I was loved deeply. And that was all that mattered. I couldn't have imagined it any other way, and at the age of 33, I still can't.<br />
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In 2000, I gave birth to my oldest son. Increasingly, doctors were asking me about my family medical history. I felt obligated to learn more about my birth family, and I was, admittedly, a bit curious. I think that curiosity might have always been there, but I chose to ignore it for fear of what I might find out.<br />
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But it felt like the right time -- time to face the unknown. <br />
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I was amazed at how quickly most of the answers I wanted just fell into place. It wasn't very difficult for me to find my birth mother, because she was already trying to find me.<br />
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We talked by email, and I learned [half of] my family medical history, and we learned about each other. I was in my early 20s at the time, and we had plenty to catch up on. The best way I can describe those early conversations were as "wonderfully strange."<br />
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From those conversations, the thing that <b>really</b> stood out to me was when she told me that, while she was pregnant with me, she watched a video about abortions at a local women's facility. She ended up leaving, and she "never looked back."<br />
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She had a choice and she chose to give me life. It hit me in that moment, reading her words, how precious my life <i>really</i> was. She could have gone through with an abortion, but she didn't. She gave me life, and in turn, gave my parents a daughter, and allowed my three children a chance at their lives.<br />
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For that, I am eternally grateful to her. <br />
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So, when I look at the photo above, and I see those babies wrapped up as gifts, I truly understand what a gift they are. <br />
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I'm going to take some time tonight to pray for all of the gifts that have come into this world, and to pray for those who have come and gone. I'm going to pray for those who never received a chance at life, and for the mothers who are faced with their own choices. I'll also pray for the couples who want nothing more than to have a gift of their own.<br />
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I don't, for one split second, take my life for granted. <br />
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The greatest gifts really do come in small packages. <br />
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And on Christmas and every day in between, I will celebrate the birth of the greatest gift of all.<br />
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"<i>And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them; and they were terribly frightened. And the angel said to them, "Do not be afraid; for behold, I bring you good news of a great joy which shall be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord. And this will be a sign for you: you will find a baby wrapped in cloths, and lying in a manger.</i>" -- Luke 2:9-12<br />
Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-6757075339059623119.post-90045375673930199582012-12-21T13:45:00.000-05:002012-12-21T18:29:44.408-05:00Poopacolypse 2012<b>12.21.12</b><br />
<br />
It was a morning like any other ... well, except that some believed it was the end of world as we know it. <br />
<br />
My alarm went off, soon followed by the sounds of my two youngest children, <a href="http://learning2walkagain.blogspot.com/p/characters.html">Chip Chip</a> and <a href="http://learning2walkagain.blogspot.com/p/characters.html">Boogies</a>, who are currently sharing a room. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyj3tWi0xKXZslHN7OUTNXAW4jyKFsbFz1xMZE7yIh7wswsHS6WNjEZwqsO1KE0WwG7zAbKUswi4dn2780IheKyu1Hu1F2VNvsJVVu4bgXm-vBRfs7i8aTqO_LapcAjx9a0eglL_w3Gk77/s1600/poop.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="209" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyj3tWi0xKXZslHN7OUTNXAW4jyKFsbFz1xMZE7yIh7wswsHS6WNjEZwqsO1KE0WwG7zAbKUswi4dn2780IheKyu1Hu1F2VNvsJVVu4bgXm-vBRfs7i8aTqO_LapcAjx9a0eglL_w3Gk77/s320/poop.jpg" /></a></div>And then came, the first sign of the Poopacolypse.<br />
<br />
"Mommy, Boogies stinks!" Chip Chip hollered. <br />
<br />
A second sign soon followed.<br />
<br />
Boogies started to cry out in a drastic manner, which was atypical since he usually wakes up in a sunny and somewhat perky mood. <br />
<br />
I rose from the bed, unsure and a little scared about what I was going to find. It much worse than anything I could have imagined. <br />
<br />
<font size="4"><b>Poop everywhere.</b></font><br />
<br />
On the rails of his crib, all over his blankets, socks, and even on Pengy, his Dreamlite penguin pillow, which can only be washed by hand. <br />
<br />
His older sister was standing by his bed, handing him baby wipes out of the container [Bless her heart]. It was a horrific sight.<br />
<br />
It wasn't like he was intentionally spreading the poop, but the poop was ... let's say - a different texture, and it spread easily on its own. <br />
<br />
I snapped into HAZMAT mode. <br />
<br />
I went and grabbed two large trash bags: One for the items that couldn't be recovered [or were just too gross to attempt to recover], and another for the 'hopefuls' -- the items that had potential to pull through this mess.<br />
<br />
In route to the kitchen, I hollered out to <a href="http://learning2walkagain.blogspot.com/p/characters.html">Big Boy</a>, who was assuming his usual position on the couch with the laptop, with something along the lines of: "Get your face out of the computer screen, we've been overcome by poop."<br />
<br />
To which he replied, "What poop?" ... never really losing focus on the computer.<br />
<br />
I picked up Boogies and went straight for the tub, holding him out in front of me by at least a foot. I placed him in the tub before I even had a chance to run the water. <br />
<br />
Within seconds, Boogies was back to himself, playing gleefully in the bath, while splashing as much water out of it as his possibly could.<br />
<br />
The whole time, Chip Chip was standing next to me reverting back and forth from "Ewwww" to "Mommy, there's more poop over here."<br />
<br />
After washing my hands to the bone and serving breakfast, I re-entered the battle zone for some final touch-ups.<br />
<br />
With his mattress bare and the washer full, I sat down, letting out a small sigh of relief, realizing that we had survived Poopacolypse 2012.<br />
<br />
Oh yea ... and the 'End of the World,' too.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFzpbPbpdCiIfOwWLVMUDUaTvzJF1Lkl1avJG6mNw016dQ3DfZVfl_UaBVijxj0xt3lzS5YXHUajY-9CMUcZJ-lQIrBdVMhveZ-JcQRW1BRVG10AvZoDC9duye6jLA_8iyBp014apGQkYq/s1600/pengy.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="200" width="138" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFzpbPbpdCiIfOwWLVMUDUaTvzJF1Lkl1avJG6mNw016dQ3DfZVfl_UaBVijxj0xt3lzS5YXHUajY-9CMUcZJ-lQIrBdVMhveZ-JcQRW1BRVG10AvZoDC9duye6jLA_8iyBp014apGQkYq/s200/pengy.jpg" /></a></div><br />
<br />
R.I.P Pengy -- He was a cute and cuddly Dreamlite, who filled the night walls with colorful stars and moons. He was a great companion for the four weeks that he lasted in our home. We choose not to remember him as he left, but rather, how he was when he entered our lives. He will be missed.<br />
11/2012-12/2012<br />
<br />
<br />
Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-6757075339059623119.post-60299468933194438092012-12-14T23:46:00.000-05:002012-12-15T15:41:05.357-05:00A Fresh Plate of Perspective<b>12.14.12.</b><br />
<br />
If there is one important thing that I have gained more of in the the past year -- it's perspective; a new way of looking at things; the ability to wipe my lens clean and see the world in a new view; a chance to appreciate things more; a lesson in not taking - even the smallest of things - for granted.<br />
<br />
Perspective was what drove me to start this blog. I wasn't sure if I was going to share my blog, or if anyone would actually read it. But I knew that my perspective was changing, growing rather. And I wanted to document that ... for myself. I wanted to be able to call that perspective back up and remember what it felt like, and how very important it was to me when I discovered it.<br />
<br />
I've been thinking about all of this, because today 20 young children and six adults lost their lives in an unthinkable shooting at Sandy Hook Elementary School in Newtown, Conn.<br />
<br />
I once wrote specifically about how horrible I felt for complaining about how much energy it would take for me to get my children up, ready, and to school. After losing the ability to do those things because of my health and disabilities, I wanted those moments, and those abilities, back more than <i>anything</i>. I felt so guilty for ever complaining. <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOLMOQow3a9zetRiFXsK7Jy2gw84G5J8zUxlij07QZ3JOj-TCTfWFRXSTGXva0caPbaBJkuKpqWbjekFBOrzoSAkmDF7zls7Jypi6TKVveD-L8vignXQkrt0fyEzB7nK9h__Bk3i8RVXpn/s1600/breakfast.jpg" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="356" width="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOLMOQow3a9zetRiFXsK7Jy2gw84G5J8zUxlij07QZ3JOj-TCTfWFRXSTGXva0caPbaBJkuKpqWbjekFBOrzoSAkmDF7zls7Jypi6TKVveD-L8vignXQkrt0fyEzB7nK9h__Bk3i8RVXpn/s400/breakfast.jpg" /></a></div>I wanted to fix them a fresh plate of breakfast. I wanted to change their diapers and help them on the potty. I wanted to help dress them and put their shoes on. I wanted to check their book bags before school and make sure they did their homework. I wanted to brush their hair and break up their quarrels. I wanted to drive them to their destination and listen to songs I didn't particularly like. I wanted to answer all of their questions. I wanted to drop them off, and hug and kiss them, and tell them to have a great day. I wanted them to know how much I love them. <br />
<br />
Today, I think about the families and friends of those children and adults whose lives were taken. I think about how they might have had some of the same types of mornings ... mornings that could have been rushed, chaotic or unappreciated. <br />
<br />
Possibly even this morning. <br />
<br />
After today, their mornings will never be the same. <br />
<br />
Their lives will never be the same.<br />
<br />
I would not pretend to know their pain and sadness. <br />
<br />
But I feel pain. And I feel sad. <br />
<br />
We don't even know who the children and most of the adults are yet, but we know that their loss was unexpected, unfair and unjust. And we mourn for them. <br />
<br />
People will debate gun laws and mental illness. The news outlets will exhaust our ears with sayings like, "Evil rolled through this town today." They will report bits and pieces of information, however inaccurate or unnecessary, until there is nothing left to report. They will interview endless amounts of people, including witnesses and members of the community, people who once knew or still know the victims or the killer, and professionals with 'expert opinions.' They will invade the privacy of people who have experienced probably the worst experience they will ever have to face. <br />
<br />
We will come to learn more horrible details that we may wish we hadn't heard. We will learn about the lives of those who were killed. No one will ever truly understand it.<br />
<br />
When I listen closely to people -- I hear and see perspective. I hear friends talking about hugging their children or loved ones tighter, and urging others not to take precious moments or people for granted. <br />
<br />
The difficult part is carrying that perspective with you always. It's not easy for anyone to do, including myself. But it's important to hold on to a fresh, real perspective. <br />
<br />
I will pray endlessly for those who lost someone that they will miss with each waking moment. I pray that their anger and sadness eventually lessons and that they are able to live with some peace and comfort. <br />
<br />
I will also pray for a lasting perspective for us all ... one that will change the priorities and values of our society. I pray for an outpouring of kindness, respect and love that has no end. I pray for the strength to overcome the darkness. <br />
<br />
<blockquote style="border: 2px solid #666; padding: 10px; background-color: #ccc;"><br />
Dear Jesus,<br />
<br />
It’s a good thing you were born at night. This world sure seems dark. I have a good eye for silver linings. But they seem dimmer lately.<br />
<br />
These killings, Lord. These children, Lord. Innocence violated. Raw evil demonstrated.<br />
<br />
The whole world seems on edge. Trigger-happy. Ticked off. We hear threats of chemical weapons and nuclear bombs. Are we one button-push away from annihilation?<br />
<br />
Your world seems a bit darker this Christmas. But you were born in the dark, right? You came at night. The shepherds were nightshift workers. The Wise Men followed a star. Your first cries were heard in the shadows. To see your face, Mary and Joseph needed a candle flame. It was dark. Dark with Herod’s jealousy. Dark with Roman oppression. Dark with poverty. Dark with violence.<br />
<br />
Herod went on a rampage, killing babies. Joseph took you and your mom into Egypt. You were an immigrant before you were a Nazarene.<br />
<br />
Oh, Lord Jesus, you entered the dark world of your day. Won’t you enter ours? We are weary of bloodshed. We, like the wise men, are looking for a star. We, like the shepherds, are kneeling at a manger.<br />
<br />
This Christmas, we ask you, heal us, help us, be born anew in us.<br />
<br />
Hopefully,<br />
<br />
Your Children<br />
<br />
-- Max Lucado</blockquote><br />
“<i>Blessed are those who mourn, for they shall be comforted.</i>" -- Matthew 5:4<br />
<br />
Unknownnoreply@blogger.com7