tag:blogger.com,1999:blog-81318319724176089972024-02-24T05:42:45.523-05:00Life is Sweet...Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.comBlogger561125tag:blogger.com,1999:blog-8131831972417608997.post-52136748369996463382020-07-01T17:14:00.000-04:002020-07-01T17:14:11.964-04:00Tread: An Ode to Svante the SvedeThis week I turned in my 8-year-old wheelchair, Svante, and upgraded to a sweet little hot-rod of a chair... which I will write more about on another day. But for now, I'm feeling a bit nostalgic. So much has happened, so much has changed over the past eight years, and Svante has been with me through it all. So here is an ode that I wrote for him today. <div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZFtq-w0aqqpVgy5-TlJV2dIjZTS16JGPrGxtAKa0iuUdl6OBlhdaWocGd8B1jA0KNcmL8vdRSpXSI0S9-5b80SBc8EXKRJCHrL4Nevm57nT5bZkRwWHBg1SUt-rgOjBbzGEYDMbhdFGN7/s960/svante.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="540" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZFtq-w0aqqpVgy5-TlJV2dIjZTS16JGPrGxtAKa0iuUdl6OBlhdaWocGd8B1jA0KNcmL8vdRSpXSI0S9-5b80SBc8EXKRJCHrL4Nevm57nT5bZkRwWHBg1SUt-rgOjBbzGEYDMbhdFGN7/s320/svante.jpg" width="320" /></a></div><div><br /></div><div><div><b>Tread: An Ode to Svante the Svede</b></div><div><i>By Connie Chandler</i></div><div><br /></div><div>We’ve been through a lot in eight years - </div><div>Mud, Gravel, Snow, Sand</div><div>Grass, Carpet, Wet Cement</div><div>And even shallow pools of water.</div><div><br /></div><div>We’ve made designs, made a mess, and made our mark.</div><div>We weren’t afraid to plunge in, plow ahead, and push forward.</div><div>Every time we were on the edge of something new, I felt you whisper, “Go!”</div><div>Everywhere we went, our tread told a story.</div><div><br /></div><div>Sometimes we needed a little help – </div><div>We slipped out of control,</div><div>We spun until we were stuck,</div><div>We stumbled and stopped at stairs, curbs, and potholes.</div><div><br /></div><div>But sometimes we were smooth sailing -</div><div>Hiking mountain trails, zipping along greenways, </div><div>Crossing bridges, exploring paths with hidden endings, </div><div>Further up and further in, faster and vaster than I thought life could be.</div><div><br /></div><div>And in those moments, I didn’t feel like I was sitting down.</div><div>I didn’t feel weak or limited or helpless.</div><div>I felt powerful and adventurous and truly me…</div><div>I felt free.</div></div><div><br /></div></div>Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com1tag:blogger.com,1999:blog-8131831972417608997.post-29083007199679818412020-04-29T14:06:00.001-04:002020-04-29T14:13:02.708-04:00An Adventure that Comes with a Breath-Taking View<div class="separator" style="clear: both; text-align: left;">
Today I am 37 years old! Every birthday I celebrate feels like a miracle and a victory, and is weighty proof of the Lord's mercy and faithfulness to me. I don't think he would allow me to see another year, another day, another hour or even another breath if he didn't have purpose in it - for me to learn and grow and see him more, and for me to get to play a role (no matter how big or small) in his kingdom work. </div>
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I relate to the world and reflect on my experiences quite often through stories and songs - I make a playlist on Spotify each year to catalog my memories of what happened and how I felt, sort of a musical scrapbook or journal. There are so many songs - everything from Disney tunes to Switchfoot, to Drew Holcomb, to Kermit the Frog! But one song has been sticking around in the soundtrack of my life for the past couple years that I want to highlight today... </div>
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From the first time I heard it in the movie, <i>The Greatest Showman</i>, the words to "Tightrope" jumped right out of the context of the movie and echoed the prayer of my heart to the Lord. You can hear the song and read the lyrics here: <a href="https://www.youtube.com/watch?v=QmGJTtXE2Mo" target="_blank">https://www.youtube.com/watch?v=QmGJTtXE2Mo</a> </div>
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In the Christian community, we talk about our relationship with God like it's a "walk." And since I can't walk physically, I typically don't use that lingo because I can't relate. But oddly enough, I profoundly relate to this song's imagery of tightrope walking, when it comes to my faith journey! Over the past several years, I've found that life with God can be flat-out terrifying. </div>
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I mean, it doesn't <i>have </i>to be... it can be pretty basic and calm, paved and level and (dare I say it?) <i>boring </i>- but only if that is all we want it to be. I believe God actually allows us to choose what that relationship looks like, to an extent. And if all we want is for him to bless our food, keep us safe, and get us through another day of our routine, then so be it... I believe this is true, because there was a time in my life when I begged him to back off and let me do things my own way, and He did. And I enjoyed it for about two minutes. I didn't feel free or in control at all - I felt weak, small and insignificant and so lonely without his hand in mine. </div>
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He wants so much more for us - He wants to <i>be </i>so much more for us! And when I realized that, and said yes to him in a whole new way, my life was forever changed. </div>
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So I said yes - yes to exploring new heights and depths of my faith, yes to discovering wild and amazing things about God and his heart, yes to true love and high adventure in whatever way he chose to give it. I wanted to experience a faith life that was on the excitement level of Indiana Jones! </div>
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Except... have you <i>seen </i>what Indiana Jones went through?? Snakes, spiders, poison darts, cave-ins, exploding airplanes, and did I mention the snakes?? To have great adventure, I must accept the very real possibility of great risks... I may get hurt, I may fall, I may lose everything... I may not make it out alive. And I have to be ok with that, convinced that God's love is better than life, and that knowing Christ means becoming like him in his death. Giving him free range of the journey and committing to follow him into the Great Unknown means I literally have <i>no idea </i>where he'll take me, but it's probably not where I ever thought I'd go, and will very likely take me through places and seasons that I never wanted to see. </div>
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But to experience adventure - the surpassing greatness of knowing Jesus as my Lord - requires courage to say yes. Not just an initial "yes" to receive forgiveness an salvation, but a daily yes - very often a "yes" for every new step I take. Because when He goes on an adventure, he takes my hand and invites me off the well-paved, fully-accessible path. He asks if I trust him with the road less traveled. And if I say yes to that, then he asks if I trust him in the dark where I cannot see. If I say yes to that, then he asks if I trust him on more perilous terrain, slippery rocks, sheer cliff faces, stormy seas, or a tightrope stretch out across the Grand Canyon. And every time I choose to trust him, he antis-up the risk, but also the pay-off - a breath-taking view of his grace and splendor that paralyzes me with wonder and awe and gives me the desire and courage to say yes to Him again. </div>
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Just like every other year of my life, I have no idea what God has planned for the year ahead. I hope this year has more well-lit corridors and fewer snakes. I hope I experience more deep-breath victories on mountain tops and fewer moments of vertigo in looking down at the abyss below me. But whatever happens, I hope God will keep leading me by the hand and that I keep saying yes... Whatever happens, I want to continue this adventure with Him.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com2tag:blogger.com,1999:blog-8131831972417608997.post-33132237210623110442019-06-05T14:56:00.005-04:002019-06-05T15:11:04.966-04:00The Not-So-Normal LifeI got my #9 Spinraza dose last Friday!<br />
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I think I've got the formula for successful blood-drawing finally figured out: 1) Drink A LOT of water beforehand, 2) Keep my hand VERY warm (wrapped in a heating pad!), 3) Stay SUPER calm. It's worked for me the past three times - one-and-done stick, in-and-out in 5 minutes. So if anyone else out there has a lot of trouble in that realm, maybe you can try my formula and see if it works for you!<br />
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We're still working on finding the most efficient/least uncomfortable way to dose. I think we figured out the best position for me to be in this time, and we may have found the best size needle to use... though we'll do it all next time and see if it works again. Tenth time is the charm!<br />
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I've been thinking about prognoses and predictions lately, especially related to kids with disabilities. It's come up several times in the past week, because people say that now, because of Spinraza, kids have a chance at a "normal life," which kind of makes me sad. Let me explain...<br />
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Often a doctor or caseworker or someone "who knows things" says that a child with a diagnosis (like cerebral palsy, spina bifida, Downs syndrome, or SMA) or who has been through horrible, traumatic experiences will "never have a normal life." This news is broken to family very solemnly, usually with sad eyes or a shaking head, like it is a shame and a tragedy. But I want to respond to that by saying, "Amen, and praise God!" Who wants a normal life anyway? Seriously, that sounds so... <i>boring.</i> Why would anyone expect (or even hope) that a child who has faces extraordinary adversity, obstacles, challenges, suffering - pick a word, any word! - will <i>at best </i>move forward in an ordinary way?<br />
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<b>These are the people who have the potential to make a dent in the universe!</b><br />
They have incredible insight, creativity, and resiliency when problems arise. They have the unique super-ability to notice, relate to, and speak into the pain and suffering of others. And they are the ones who can inspire and encourage and challenge those people in the world who are unfortunate enough to be living "a normal life."<br />
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Some quick examples of amazing people who had a challenging childhood are Helen Keller, Nick Vujicic, and Jean Driscoll, Joseph (from Genesis), Malala Yousafzai, and Bruce Wayne... but I'm sure if you think about it for a minute you will think of more, whether from the history books, story books, or your personal life. Imagine what our world would be like without their leadership and influence!<br />
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So many people in our world have a backward perspective. They think "normalcy" is a dream to be achieved and suffering is a nightmare to be avoided at all costs. But I know that isn't the way God sees it; every life is valuable and precious to him, and he can take every weak and broken piece and transform them into powerful and beautiful things.<br />
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<b>Whether a child ever speaks a word or takes a step, their lives can speak volumes and have a butterfly effect that touches hearts and shakes the world.</b><br />
Don't despair for the children in your life who endure painful and difficult things; help them to be courageous, strong, and full of hope. Remember - and remind them often - that this is evidence that God has BIG plans for their lives and there is EXTRAORDINARY work he wants to do through them.<br />
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And thank God for every child you know who is not "normal."Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com1tag:blogger.com,1999:blog-8131831972417608997.post-8632902706398414132019-02-05T19:46:00.000-05:002019-02-05T19:46:13.822-05:00Keep it goingIt's February now, and I think it's time for an update.<br />
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I was able to do 10 weeks of physical therapy this winter, twice a week! I loved it. It felt good to have a regular "workout time" scheduled into my week, both mentally and physically. My joints ached a lot less, I found that I could just move easier, and I felt more purposeful in my self-care. I liked being able to see quantitative, measurable improvements, even if they were small, but I got excited when they were significant, too. We saw more significant progress in the first five weeks, and then it kind of leveled off over the last five weeks.<br />
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When I began, and I was told to kick my leg out or lift my arm, nothing happened. But as time went on the correct muscles began to respond - fire, activate, engage, whatever you want to call it - they were obeying my brain's command to "move" in a way they haven't done in years. So even though I still can't visibly kick or punch, my muscles are training themselves to do those things.<br />
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A couple new things I have noticed that I can do now: tear away Christmas present wrapping paper and slowly set down a mug of hot tea (instead of dropping it). A dear friend told me last week that she noticed that I am doing more things and my energy lasts longer throughout the day; I used to do less and get tired a lot faster. <br />
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On January 28, I went in for my #8 treatment. I asked my neurologist if he thought I should continue with PT, and he said, "If you think it's helping, keep it going." In other words, "Whatever makes you happy." He didn't have a whole lot of new insights for me, and I was a little frustrated... I don't want to waste time, energy or resources on something like this. If I'm going to keep it up, I want to know it is making a difference - fast or slow, small or significant, it's about forward motion, people!<br />
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So, I called the Biogen representative, whom I affectionately refer to as "my drug guy." As usual, he was incredibly helpful. He said that the research has shown on-going significant progress in Spinraza patients. If you look at the graph at the bottom of <a href="https://www.spinraza.com/en_us/home/results/later-onset.html#function" target="_blank">this page</a>, you'll see that the progress isn't steady and constant, though. There are times when it levels out or slows down and there are times when it makes big leaps. But no matter the rate, it's upward, forward, increasing progress. So my drug guy encouraged me that even though my progress in PT seemed to plateau after five weeks, that doesn't mean I've maxed out my potential; the potential for growth increases over time, just as the potential for deterioration increased over time before Spinraza.<br />
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I've decided to resume PT in March. I think what may happen is that I do a month of PT and take a month or two off, and then do another month... or something like that. I don't know for sure yet, I want to consult with my therapist. But on my "off" time, I don't want to lose momentum. At home in the mornings and evenings I'm doing the exercises I've learned, a little bit every day. I'm hoping to maintain what I've gained, and when I go back in March, we can add in some new things and slowly build it up.<br />
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I'm learning the value of steady continuity, in intentionally using muscles and pushing them a little further all the time. Keep it going!<br />
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<br />Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-51371329773834198142018-11-02T09:22:00.002-04:002018-11-02T09:22:56.172-04:00Push, Pull, Squeeze, HoldI've taken my Spinraza treatments to the next level!<br />
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In October I received dose #7, and realized I've been doing this for a year now. I feel more energetic and have longer-lasting stamina. I breathe well without being daily dependent on Albuterol. I have more movement in my fingers.<br />
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But I feel that there is a lot of unknown and untapped potential for my muscles. For 25 years, I've been wheelchair-bound, unable to bear weight, and slowly using my arms and legs less and less. Things are tight and small and weak, but I wonder if that could change now... What if I could open doors again? What if I could brush my own hair again? What if I could help with my own transfers? No one seems to know what is possible, so let's find out! It's a bit like Spider-Man, getting new superpowers and figuring out what he is capable of and how to use them...<br />
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I talked with my neurologist about this, and he agreed and prescribed physical therapy. Last week, I went to a consultation, and explained my situation to the PT. After an interview and exam, and copious note-taking, he seemed really excited to take on this challenge with me, and said we should start with 2 sessions a week for 8 weeks, and see what happens. So, after basically 25 years, I am back in PT!<br />
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My PT assigned me some homework to do in between sessions. These are muscle contraction exercises I can do in my chair or in bed, by myself. In our sessions so far, we've been doing isometric exercises, which means he will raise my arm or leg to a certain suspended level and tell me to try to hold it up, or at least support it as it slowly falls. We also do resistance exercises. It doesn't look like I'm doing anything, but it's hard work for me! Even though I'm not actually moving much, my heart rate goes up and I break into a sweat because I'm focusing on trying to get my muscles to respond - push my fists against inanimate objects, pull my foot up and down on the mat, squeeze my shoulder blades together, and hold... everything. I think the holding is the hardest part so far; with every exercise, I'm supposed to hold the position for 10 seconds. That tension is difficult and exhausting to maintain. (It feels like there's a life metaphor in there, doesn't it?)<br />
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I've completed 2 sessions (1 week) in the schedule now, and I'm sore. But I'm also excited and hopeful... I'll let you know how things process over the next few weeks!Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-31391155721844300382018-09-08T13:36:00.000-04:002018-09-08T13:40:53.924-04:00Creative and Courageous in Colorado<div class="separator" style="clear: both; text-align: left;">
I recently took a trip that I have dreamed about for a while, and didn't think would ever actually happen. I took a train on an 18-hour ride from Chicago to Denver, and spent a few days in the spectacular mountains of Colorado! On my own, this would be impossible. But the Lord went with me, and he made it possible for two very dear friends to go with us too! </div>
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My brother, Kevan, has taught me that anything is accessible when people are creative and courageous, and I definitely saw that demonstrated on this adventure. Here's some examples...<br />
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<li>First of all, <b>my dad is a true McGyver-genius</b>. This summer, he adapted my portable "Connie lift" (which connects directly to the back of my chair and plugs in to run off the battery) so that it's made of two pieces of light and strong aluminum, making it even easier to pack, transport, and handle (in my preppy-looking golf club bag!). This baby went everywhere with us, and did all the lifting so the girls and I were safe and comfortable the whole time.</li>
<li>I have to give major kudos to <b>the state of Colorado</b> for their accessible restrooms and transportation. Big, private, family restrooms were basically everywhere, so I never had to cut our outings short to run back to the hotel multiple times a day. Family restrooms in public places are. the. BEST. (Take note, rest of America.)</li>
<li>The <b>sleeper car attendants</b> on the train were really wonderful and helpful, checking on me frequently, taking room-service meal orders, and providing three extra pillows just so I could comfortably sleep on the cot through the night (which I did... slept like a log!).</li>
<li>Then there's the <b>waiter at Hard Rock Cafe</b> in Denver... the silverware was too heavy and cumbersome for me to handle, and he couldn't find plasticware in their kitchen. I told him it was fine and I'd make it work, but he ran outside (in the rain) and across the street to get a plastic fork from another restaurant, and brought it back for me anyway.</li>
<li>Thank you to <b>the National Parks</b> for being wheelchair-friendly! There were paths I could take everywhere we went - paved or dirt, flat or hilly, but always scenic and beautiful. It was such a blessing to feel free to hike to summits, stroll along sparkling lakes, and climb red rocks! </li>
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<li>My favorite story from the trip was in <b>Estes Park at the aerial tramway</b>, which claimed to be accessible. True, there was a ramp, and true, there were no steps, but... to get from the ramp to the tramcar, there was a pretty hefty gap that my chair wouldn't cross. The two middle-aged ladies in charge did their best but realized the challenge was beyond them. Just when I thought they would say "Sorry, we can't do it," they looked at each other and both said, <b>"We'll call Adrian."</b> A couple minutes later, the tram came down the mountain toward us, and a young guy with sunglasses on could be seen, fists on hips like Superman, and a wide confident grin on his face. <i>Adrian, I presume, </i>I thought, amused but doubtful of his abilities. He came over and took a good look at all angles of my chair, asked a couple good questions about it (NOT including, "How fast does that thing go?") and tested some handholds. Then he gave me a few instructions on how to angle my wheels and a few explanations of what he was about to try, and before I could be scared, I was safely in the tramcar! <i>Adrian is a magician! </i>No, but he's an engineering student who, I'm convinced, has other disabled people in his life... this was clearly not his first attempt. He actually had adapted the platform at the top of the mountain so that it truly was more accessible. So we went to the top, got a coffee and some souvenirs, fed the chipmunks, and then let Adrian accompany us safely back to the bottom.<br /><div style="text-align: left;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBaHyBErfPQtINEpPPGnpV7qCeaIVPC-Os6SYK5uVNm6MIz1lPgfpD3MI_vgdqbUGQNcorDwLjlAXKsC4pbDpMeQgYeErLaHQZeSSrGuneHBa0pYm5MbZYj9mI7heIYpC_rWSmGCAsvYrg/s1600/imagejpeg_0+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBaHyBErfPQtINEpPPGnpV7qCeaIVPC-Os6SYK5uVNm6MIz1lPgfpD3MI_vgdqbUGQNcorDwLjlAXKsC4pbDpMeQgYeErLaHQZeSSrGuneHBa0pYm5MbZYj9mI7heIYpC_rWSmGCAsvYrg/s320/imagejpeg_0+%25281%2529.jpg" width="240" /></a><br /></div>
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<li>Last but definitely not least, <b>Pam and Rachel</b> - the most creative and courageous of all! They both were full of energy, strength, optimism, and hope through the whole journey. Nothing phased them. They constantly were paying attention to find the best places, views, and activities that we could do together, so that I forgot that I had a disability at all. On the last day, the only disappointment we faced was that we couldn't figure out how to navigate the mineral hotsprings spa that claimed to be accessible, but really wasn't at all. We'd been looking forward to it all week, but I tried to forget it and hide my disappointment. But these girls took me back to the hotel, ran a hot bath scented with lavender oil, turned on soothing music, and gave me some time to soak and relax. A perfect, peaceful end to a thrilling and adventurous week. Pam and Rachel were the perfect people to join me, and they made this a trip I will cherish forever. </li>
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Whatever limits or challenges you face, remember that God is creative and courageous, and the master of tackling what seems impossible to us. When we put our hope in him and look for people around us who live out these aspects of his image, the possibilities are endless - and adventure awaits!Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com1tag:blogger.com,1999:blog-8131831972417608997.post-34766515366229102792018-06-18T20:31:00.000-04:002018-06-18T20:31:28.462-04:00It's Your breath in my lungs...I've written quite a bit over the years about breathing, and particularly my struggles to breathe. I've been reviewing some of my old posts, and I listed some of the links below, in case you want a review, too. The interesting thing to me is that most of these posts also include song lyrics - worshipful songs about air, breath, spirit and strength. Singing, to me, is a sort of joyful cry of victory against weakness and despair... it is the evidence of a Power deep inside me that is much greater than me.<br />
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Today I had my 6-month pulmonary check-up. I did the obligatory annual breathing test and let the doctor listen to my lungs. The conclusion was that my respiratory strength is the same as it was last year, and to me that was really wonderful news. See, in the past year, I've had two surgeries in which I had to be intubated, and I was in the hospital with pneumonia only four months ago. I really expected that my strength would have weakened with all this drama.<br />
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When I originally talked with my neurologist about what Spinraza might do for me, she said, "At the very least, it should stop the progression of the disease." At the <i>very least?? </i>a disease that has slowly chipped away at my strength and health would be <i>stopped?? </i>Wow, what a miracle. I wonder if Spinraza is working to stabilize my lungs. I wonder how that happens, how protein injected in the spinal chord is able to do this, and I wonder what exactly "this" is that it's doing.<br />
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I wonder about science and research and medicine, and the mysterious role it might play in reversing bits and pieces of the curse of Sin... But I don't wonder about Jesus. If I am certain of anything, it is that He is my Strength and my Portion and my Song. He is the breath in my lungs, and I pour out my praise to him only.<br />
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Past posts about breathing:<br />
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<a href="http://conniesbowlofcherries.blogspot.com/2011/09/breathing.html" target="_blank">Sept 15, 2011</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2011/11/you-breathe-too.html" target="_blank">Nov 1, 2011</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2012/01/choose-life.html" target="_blank">Jan 25, 2012</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2012/04/holy-ground.html" target="_blank">April 8, 2012</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2012/04/intentional-purposeful-breath.html" target="_blank">April 27, 2012</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2013/06/keeps-me-singing-keeps-me-breathing.html" target="_blank">June 21, 2013</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2017/12/every-breath-you-take-is-miracle.html" target="_blank">Dec 5, 2017</a><br />
<a href="http://conniesbowlofcherries.blogspot.com/2018/03/setbacks-and-progress.html" target="_blank">Mar 2, 2018</a>Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-24366027961281420162018-06-04T21:03:00.002-04:002018-06-05T12:06:15.688-04:00Dose #6 of the Super-Soldier SerumToday I got my sixth dose of Spinraza - it's been 10 months since I began this journey with the first dose!<br />
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The lab work was a success - as in, it only took three attempts to find and retrieve two tubes of my platelets... So that's good, right? I think I'm becoming notorious around the lab. The lady who called me back actually remembered me from four months ago, and promptly rounded up three other phlebotomists to assist her. Special thanks to the one who gave me a "Skylander" Band-Aid, and major kudos to the feisty little lady who stabbed me fearlessly and wouldn't take "No" for an answer from my shy and elusive veins. I saw my neurologist on the elevator afterward, and observing my multiple bandages and bruises, he casually said, "So... I see you got your labs done." Mom treated me to a cherry danish and tea afterwards, which is becoming my regular post-blood-draw reward for NOT crying or biting anyone. Overall, not a terrible morning.<br />
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Three hours later, I was in Diagnostic Neurology, signing my name in acknowledgement that this treatment could result in headaches, bleeding, infection, or DEATH. My doctor is always quick to add that the "death" part hasn't happened to any of his patients so far, blah-blah-blah... I waved him off and signed with a flourish. Please, give me this moment to face Death and feel just that brave! Again, that epic scene from <i>Captain America </i>flashed through my memory, and I smiled as I told myself that it's "super-soldier serum" time. I was really quite proud of how cool I was being about the whole thing.<br />
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<img alt="From weakling: Chris Evans stars in Captain America: The First Avenger as a scrawny man who is transformed into a muscle-bound superhero. Scientists now believe they can replicate this over a period of months with a growth hormone" src="https://i.dailymail.co.uk/i/pix/2011/07/25/article-2018562-0D14881F00000578-503_468x286.jpg" /><br />
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One more hour later, and I'm laying on my side, facing a taupe-colored wall ("They say taupe is very soothing"). I can't see what's going on, and no one is giving me any verbal hints. I know there's a small needle in my lower back, and we're somewhere in the process of either sucking out cerebral spinal fluid or injecting Spinraza. It doesn't hurt me at all... I felt the initial stick of the needle, but honestly that is it. My doctor is very careful and cautious and takes his time to make sure everything goes all right, so I just need to lay still and stay calm and not be the annoying kid who keeps asking "are we there yet?". So while I try to find patterns and count the various shades of brown in the wallpaper, I reflect...<br />
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Last year at this time, I was still in consultation mode with the neurologists. Lots of unknowns, but also lots of optimism. I knew there would be risks, but I didn't know how complicated, long-term, or painful it would be. The past year has been quite a roller coaster ever since... as the Lord uses this medicine to strengthen and sustain my body, he seems to have a correlating (if not increased) interest in the condition of my heart... to remind me to find my strength, purpose, joy and hope in Him. Again and again, he proves himself almighty and faithful to me.<br />
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Today's treatment went well, with no problems. I had a little trouble with my breathing shortly afterward, and felt tired and emotional the rest of the afternoon, but the doctor thinks that's all due to stress relief... I guess I was more anxious and stressed out beforehand than I wanted to admit. But all in all, I'm curious, and yes, even excited to see what happens in my life in the next four months before my next injection... I'll be sure to keep you posted!Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-20242051693924508922018-04-17T14:18:00.000-04:002018-04-17T14:18:32.184-04:00I have this hope...I had the privilege to go to a special luncheon last Saturday for local families of Spinraza patients. I met a man in his 50s who started taking Spinraza at about the same time I did, a mother whose 7-year-old daughter is on Spinraza, and a mother whose 3-year-old daughter was one of the earliest Spinraza patients. It was really wonderful to meet these people, hear their stories, and get to share my story with them.<br />
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The thing that brought us all together was Spinraza, and I know one of the main purposes for bringing us together was to talk about how great it is. And there is nothing wrong with that - I'm a big fan of this treatment, and I'm excited to see how it will help me and lots of other people. I am thrilled to know that young children with SMA now have the chance to develop their motor skills, and that adults with SMA can maintain and rebuild their strength. I am so thankful to know that Spinraza is just the beginning - it has opened doors and increased research opportunities for other treatments and possible cures to be discovered. It's a miracle, and it is changing lives all over the world.<br />
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But my hope is not in a drug called Spinraza. Long before an answer was found, long before the FDA approved it, long before doctors were able to conclude their diagnoses with: "...but a treatment is coming soon," I found peace and hope and joy. It came in the form of a relationship and a promise - and it didn't ignore my disease, but it also wasn't contingent upon it. I chose to take hold of it as a small child, but it's taken a lifetime to understand. I've wrestled with it, desperately clung to it, and almost lost it at times... it's stretched and grown and deepened, at about the same rate as my muscles have tightened, shrunk and atrophied.<br />
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<img alt="No copyright intended. image does not belong to MissVenShaw. " height="200" src="https://missvenshaw.files.wordpress.com/2014/04/christ-is-my-hope.jpeg?w=640&h=400" width="320" /></div>
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No matter how small, weak, sick, or unable I am or become, Jesus is strong and constant and great and mighty to save me. He promised never to leave me and never to let me go, and after all the things we've been through together, I can't help but trust him. He promised that he knows and understands me fully, and when I read and remember all that he sacrificed and suffered for me, I know it is true. No matter what else changes in my life and my world, his promises stay the same. His love, mercy, and faithfulness to me has never, and will never fail - this is my hope! </div>
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I'm thankful God has given me the chance to experience a treatment for my disease, and that I get to see his creativity, intelligence, and ingenuity through medicine and science. But whether or not Spinraza has any effect on my body, I know my life is purposeful and beautiful and valuable, because Jesus has saved me and made me whole.</div>
Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com1tag:blogger.com,1999:blog-8131831972417608997.post-34298678702536940982018-03-02T14:49:00.000-05:002018-03-02T14:49:33.595-05:00Setbacks and ProgressI had my first maintenance dose of Spinraza on February 5, and with that milestone I set some personal goals. See, I've learned that this treatment provides potential - potential for muscles to strengthen and rebuild - and I needed to start doing some serious work to live up to this potential. More stretching, more exercising, more intentional diet, more breathing... basically just moving and working out whatever I can. I kicked off this knew season with a little trip to Florida on Feb 8-14, to soak up some much-needed vitamin D and deep-breathe that salty sea air and digest as much seafood and fresh fruit as possible. Mission accomplished, I came home determined to get to work.<br />
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But five days later, on Feb 19, I woke up with a sore throat and hacking cough, and three days after that, I found myself in the ER, getting chest X-rays, blood work, IVs, and without much hesitation getting admitted with pneumonia. I felt weak, exhausted, dehydrated, congested, and discouraged.<br />
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<i>Setbacks.</i> That was the title that overwhelmed my mind for the four days I spent in the hospital, and to be honest, it's continued through some darker moments since I've returned home this week. Wheezing and coughing without much in the way of results and relief eventually burns a hole or two in the human spirit. It felt like I was wasting away, shriveling up, getting weaker at the time I should be getting stronger. I knew that taking Spinraza wasn't going to automatically make me immune to illness for the rest of my life, but it still made me disappointed to face my old enemy again so soon.<br />
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<i>Progress. </i>In my brighter moments of optimism and clarity, I have noticed some things that were different about this experience. I've been hospitalized for pneumonia many times throughout my life, but I believe this was the first time I was <i>never put on oxygen support. </i>The whole time I've been sick, my O2 saturation levels have been 96% or higher, with no outside assistance! The nurses told me this probably was a big factor in me being able to go home so soon - they didn't have to ween me off the oxygen. I was only in the hospital for <i>four days - </i>which is a noticeable improvement to the two-week stints I've had to endure in recent years. My hospital stay also did not include the rather uncomfortable measures of <i>a bronchoscopy or nasopharyngeal suction</i>, which have been necessary in the past. And the respiratory therapists utilized a <a href="http://www.steomedical.com/therapy/vest-airway-clearance-system.html" target="_blank">High-Frequency Chest Wall Ossilation vest</a>, which I've not been strong enough to handle in the past, but worked really well for me this time around. I have an idea that Spinraza has something to do with these remarkable bits of progress.<br />
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It's been over a week, and I'm still coughing, still fighting, still working toward recovery. But I'm doing better and getting stronger every day. Thankful for minimal setbacks and encouraging progress.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-5645365086828261942018-01-29T22:00:00.000-05:002018-01-30T09:02:43.927-05:00HandicraftsOne more week until my first post-loading-dosage treatment! Medically speaking, my life has been pretty quiet for the last three months, which I am incredibly thankful for. There's been no more swelling or leaking. I've dealt with some sciatic nerve pain, but that is improving with stretches and a new seat cushion.<br />
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The big question people constantly ask me is: Do you notice any improvements or change? It's hard for me to identify specific things, but others have told me that my neck seems stronger and I'm able to bend my arms easier.<br />
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Over Christmas break, I tested my ability with some hand-crafted projects: a cross-stitch "baby's first Christmas" ornament for my darling baby niece, Josie, and this nifty crochet hat for Kevan, which he said reminds him of old-school <a href="https://upload.wikimedia.org/wikipedia/en/7/71/John_Reuben_Are_We_There_Yet.jpg" target="_blank">John Reuben</a>:<br />
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I was pleased that I was able to complete both projects, and in a matter of days instead of weeks. I haven't been able to do these kinds of projects for about three years. One thing that made me laugh is that while I was working on them, my eyes got tired before my hands did! Being able to do these things is a huge encouragement to me, because it means my fingers, wrists, and arms are getting stronger. I am so thankful to be able to use my hands to create things that are beautiful and useful.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-89518519397560857602017-12-05T12:17:00.000-05:002017-12-05T12:17:01.030-05:00"Every breath you take is a miracle!"<div class="separator" style="clear: both; text-align: center;">
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"How's your breathing these days?" It may seem strange, but this is a pretty typical catching-up question between my friend Anna and I when we hang out... just two little asthmatic chicks looking out for each other. When she asked me last week, I kind of frowned and had to think about it for a minute, trying to recall the last time I woke up congested and rattling, the last asthma attack, or the last major aspiration I've had during a meal. </div>
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But it's been a while. </div>
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In fact, digging through my purse the other day, I found my ProAir inhaler and realized I haven't used it in over a month... a month! For the past couple years, I've gotten used to needing a couple puffs at least once a week. The weather here has been nuts lately, too - dramatic warm/cold/dry/damp conditions that usually aggravate my lungs all the more. So this season of good health can't just be a fluke, can it? </div>
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For the past few days, I've found myself escaping the hectic buzz around me by just taking a slow and deep breath in, and enjoying the clarity, silence, and even strength of it... and then letting it all exhale, just to let another full dose of oxygen fill me again. It sounds crazy, I know, but I think my lungs are actually getting stronger. I think Spinraza is helping to rebuild my respiratory/pulmonary functions - a part of my system that has caused the greatest concern and fear in my life over the past 25 years. </div>
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About 20 months ago, Kevan introduced me to a new song by Switchfoot called "Live It Well." The opening lines are incredibly relevant and powerful, especially to kids like Kevan and I: </div>
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<i>"Take the burden from my arms, </i></div>
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<i>Take the anchors off my lungs, </i></div>
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<i>Take me broken and make me one, </i></div>
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<i>Take the silence and make it a song..." </i></div>
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We know what those burdens, that brokenness feels like, beyond the metaphorical... that invisible weight of gravity that holds down our arms, and the anchors that press on our lungs. Those lyrics became a deep and resilient prayer in my heart. Before a treatment called Spinraza was announced, a seed of hope grew in me... that somehow the Lord would lift these burdens so we could breathe deep and free, so we could move without restraint. And I think he is answering that prayer. </div>
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<i>"Life is short, I want to live it well,</i></div>
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<i>One life, one story to tell</i></div>
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<i>Life is short, I want to live it well,</i></div>
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<i>And You're the One I'm livin' for</i></div>
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<i>Awaken, O my soul, </i></div>
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<i>Every breath that you take is a miracle..." </i></div>
Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-70005658323613093502017-10-26T19:35:00.000-04:002017-10-26T19:35:04.947-04:00Two things tires and Connies shouldn't do...swell and leak. <div class="separator" style="clear: both; text-align: center;">
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Unfortunately, most of my energy this week has been spent doing these two things. My new surgical incision started seeping at varying intervals and in varying quantities, and my back got pretty swollen and sore, too. I went through quite a bit of sterile gauze, paper tape, Tylenol, and ice packs. When I was up, I wore a back brace like a corset, and when I didn't have to be up, I was laying flat on my bed. When I was at my best, I was praying and singing praise songs, and when I wasn't, I was racking my brain for what else I could do to make the healing process more successful. It was difficult. </div>
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My one-week check-up last Thursday was quite a long, confusing, and exhausting mixed bag, but the best thing that came out of that time was that I was able to get my last loading dose (#4) of Spinraza! So I don't need another one for four more months - that's February, people. Praying that we'll get to see some good progress in the meantime. If I do, I'll be sure to report it right here, so stay tuned!</div>
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My two-week check-up today was much shorter and sweeter. I got my stitches out, and miraculously (seriously, it's a miracle) my back has stopped swelling and leaking, and is looking much more normal... well, whatever my "normal" means. So I got the A-OK from the nurse - no more gauze, no more corsets, no more bed rest. To me, this was great news... it means maybe, just maybe I can get back to really living my life. </div>
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Which is a good thing, because tires and Connies are meant to move... there are so many places to go, people to see, and things to do! Look out world, here I come (again)!</div>
Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-53382949266500191832017-10-14T18:51:00.000-04:002017-10-14T18:51:13.567-04:00Praying doctors<div class="separator" style="clear: both; text-align: center;">
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As usual, things were more complicated than expected with the surgery on Wednesday. The first big issue was getting an IV in me in pre-op. Historically, my little, unstable veins do cause problems with this, but very kind and skilled medical professionals with very high-tech equipment shouldn't be dealing with six failed attempts... and yet they did. I could almost swear my veins saw the needle coming and fled for shelter. </div>
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So after all that, they decided to take me on back to the OR and give me some "laughing gas" - which at this point did not make me laugh - and try again. As I faded in and out of semi-consciousness, I could tell they were still having trouble and I began to wonder what they would do if they couldn't get a vein. Then I heard the guy who was holding the mask on my face say, "Dear God, please let this work." And then another relieved voice said, "We got it! Guys, we're in!" That is the last thing I remember, and the last thought I had as I fell asleep was, <i>I am so thankful for praying doctors. </i>And I've been incredibly blessed to have quite a few of them this year. </div>
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Apparently the tube had come completely out of the hole in my vertebrae, so I'm glad my neurologist had the good sense two weeks ago to not give me my next Spinraza dose. The surgeon did all he could think of to secure everything so we don't have to do this again - some sort of sealant, extra living tissue, and "tacked" the port in two places (whatever that means). The problem, it seems, is my muscles - they just aren't big enough and strong enough to create stability and provide support for this sort of thing. Ironic, since the point of all this is to be able to get a medicine that could change all that. </div>
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I didn't have to spend the night at the hospital (yay!). I was there 12 hours, and after a cup of pudding and the doctor's approval, I got to come home and sleep in my own bed that night. So, I've been in bed most of the past three days, and plan to continue this until Monday. Praying for everything to heal as it should, and everything to stay in place!</div>
Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-27502799047627997302017-10-05T17:23:00.001-04:002017-10-05T20:58:22.778-04:00There's good news, and there's bad news... The past week has felt like an internal tug-of-was between Tigger and Eeyore:<br />
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I went to the neuro clinic last Friday to get my fourth dose - the final dose of my two-month loading period. The neurosurgeon came in to check on me, too, and he and my neurologist agreed that, while my back was looking much better, it would be a good idea to draw the rest of the fluid out before doing the treatment. They got 70 cc's of fluid off! (That's 12 teaspoons, or 2 fluid ounces, or a standard shot glass, in case you were wondering.) My back felt and looked SO much better, once my camel-hump was gone.<br />
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That was the good news.<br />
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After that was done, my doctors found that the port/reservoir (the one that was installed, for injecting the medicine) had significantly moved to a different position in my back - placed originally to the left of my spine, it was now on the right side, and was floating further and further east. They became concerned that the tube in my spinal chord had come loose. They had difficulty drawing CSF out. They did not do the injection. They sent me for an X-ray. Over the weekend, I learned that the tubing has coiled up in my lower back, and had pulled further out away from its original location.<br />
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That was the bad news.<br />
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This must be repaired, if I want to continue the treatments, and that means... another surgery. It's scheduled for next Wednesday. The good news is, my fall break from work is next Wednesday through Friday, so I don't have to miss any days of work for the procedure or healing time; the bad news is, I will be spending my fall break in a hospital and laying flat in the bed for several days, instead of... doing anything else.<br />
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A friend asked me the other night if I regret my decision to go through all of this. While I am frustrated and a bit weary, I wouldn't call it regret. If I had known beforehand all of these complications would happen, I probably wouldn't have done it, because I'm not as strong and brave as I'd like to think. But I think that's pretty classic of a lot of things in my life... with so many of my experiences, if God had told or shown me how difficult and painful they would be, I would have refused to be obedient and would have chosen to stay as safe and comfortable as possible. That's why I'm glad he didn't. Those same difficult and painful journeys have become some of the most powerful and beautiful experiences of all. They have led me to meet some remarkable people, learn incredible truths, and see and do things far beyond my craziest plans. God doesn't waste a single ounce - or teaspoon, or cc - of the moments that make up my days. He is able to use and redeem even the scariest, most complicated, most exhausting and hard things, for my benefit and his glory.<br />
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And that's the good news.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-76686411724489624692017-09-17T15:12:00.000-04:002017-09-17T15:12:01.296-04:00The hemming inMy third dose was on Friday, September 1, and it was fine, just not very blog-worthy. Because my back was still quite swollen from the surgery, my doctor used an ultrasound machine to find the reservoir and be precise with the injection. At this point, I have noticed some increased strength and flexibility in my fingers and thumbs... which is definitely encouraging! I'm hoping to continue to see progress there, and maybe attempt some of my old handicraft hobbies again this winter, like crochet and cross-stitch. I found out that my neurologist likes to cross-stitch pictures of the brain... maybe I'll try that, in honor of her support?<br />
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The following Tuesday, I had my one-month check-up with the neurosurgeon. I almost didn't go, as I felt like I'd spent enough time at the hospital for one summer. But I do like my neurosurgeon, and thought it would be nice to have him see how well I'm doing... except for that annoying swelling that just won't go down, and those nagging pressure headaches when I lay down. I suppose it's a good thing that I went to the appointment, because when I told him about my two little inconveniences, he took a look at my back and declared (with some displeasure) that I still had a CSF leak from the area where he had placed the tube in my vertebrae. Apparently, I am more active than he anticipated, and didn't lay still long enough for it to fully heal. He explained that he had put some extra muscle tissue around the tube, but that it needed time to heal and seal up the gap where the fluid leaked out.<br />
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He gave me immediate orders to take a week off work and lay flat on my bed. I nearly cried, and told him I really couldn't take that much time off - I had too much to do! So he said, "Two days, then. We'll see how you are after two days. I want to see you here again a week from today." So I took my two days off and did what he said. On Thursday afternoon, I called to give an update. Better, but still swollen, still getting headaches. He told me to stay in bed until my appointment on Tuesday - sneaky little bugger, ended up making me stay in bed a week anyway! Then the ominous news: "If I'm not pleased with the progress by then, we may have to do another surgery."<br />
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<i>Oh God, please not that. </i><br />
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There was a shift in my spirit. I could feel fear and frustration and anxiety and despair begin to creep in. Stillness and silence can be a breeding ground for all sorts of psychological and spiritual battles. I had this surgery - I was getting these treatments - in hopes of being stronger and more active, and here I was, able to do nothing at all but lay down and wait. I needed to proactively fight the brooding darkness... so I prayed for help and grace and courage.<br />
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And then I sang. I mean, a lot. And loud. For...hours. I sang praise songs, songs of hope and truth. And I felt my spirit lift and embrace joy. During this time, God brought to my mind this verse:<br />
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And it comforted me. I thought of Jesus using his personal sewing kit and stitching up all the gaps in my back where spinal fluid was leaking out, and then stitching up all the gaps in my spirit where trust and hope was leaking out. I claimed this verse in the most literal way I could, trusting that he has and he will hem me in. It was the sweetest and most intimate time I've spent with my Savior in a while. As difficult as it is for me to be still, that's exactly what I needed, to remember that it is God who heals, who redeems, and who makes all things beautiful in his time.<br />
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The week finally ended, and my second appointment was much better. The swelling has gone down quite a bit and my headaches are gone. The surgeon was pleased, and said I could return to work, as long as I tried to rest and lay down as often as possible. I am trying my best! The next injection is September 29, and the surgeon has requested to be present for that to check my progress. Please pray for continued healing in the meantime!Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-4566325332715783202017-08-17T21:18:00.001-04:002017-08-17T21:18:26.307-04:00Second dose!This afternoon, I received my second dose of Spinraza. I went to the hospital a little early, to do lab work, and then headed down to the neuro clinic. Honestly, there's not much to say about the actual treatment time - the drawing blood in the lab felt more traumatic than the needle in my back. I think that is mostly due to the shunt/reservoir placement, which makes access so much easier. Plus, I have a really wonderful neurologist! It went smoothly and took less than five minutes, I was in no pain, and I'm feeling good this evening.<br />
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People have been asking me if I feel any different yet, and I can't honestly say that I do, in terms of strength and mobility. I wasn't really expecting to this soon, though, and I'm trying not to over-analyze any bursts of energy as part of the healing. I think the work that is happening right now is the slowing down and stopping of the progression of the disease... which in my imagination looks a lot like Superman stopping a plane crash:<br />
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Pretty insanely epic, though hard to clinically measure or physically feel. However, I will let you know if I notice my superpowers evolving in the future! ;)<br />
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I was remembering that when I was in the neurosurgical unit at the hospital, there were quite a few doctors, nurses, and other medical professionals who knew very little about, or had very little experience with, SMA... which at first seemed weird, since it is, afterall, a neuromuscular disease. But then I realized that it's probably because there hasn't been a neurological treatment for SMA until now. Before Spinraza, SMA patients were primarily seen by orthopaedic specialists, because the main plan of care involved physical therapy... and even that was focused on children, not adults. I haven't had formal physical therapy in fifteen years. This new drug is really going to shift some things in the medical world!<br />
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Today, my doctor said that the neurosurgeon who placed my shunt is getting ready to do the same procedure on another adult SMA patient soon, and they are even talking about building a special program at the hospital to provide this option to other similar patients. Can you imagine?? And I got to be the first one! They must be pleased with the results, if they want to do it more. I feel so honored to be a part of blazing that trail.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-34997026136609625342017-08-12T12:49:00.001-04:002017-08-12T12:50:55.480-04:00"Failure is not a problem to be considered!", or "How to manage headaches"It's been quite the week for me, and not in the typical "amazing life of Connie Chandler" kind of way. Headaches have continued, along with nausea, aches and pains, exhaustion, apathy and emotional battles. Multi-level discomfort has a crude way of chewing up and spitting out joy and hope in a broken, soggy, sloppy mess. Needless to say, I have not been myself, so I've intentionally stayed away from blogging so as not to depress you all. But I'm back now!, which must mean...<br />
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I finally feel myself coming back! </div>
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My neurologist has been pretty wonderful this week, calling me daily to check on me and talk through my symptoms. She basically put me on bed rest for the week, telling me I was overdoing it and I just needed to slow down and try to let my body heal. My worst headaches have been in the morning when I go vertical, and she said there may be some fluid leakage around the shunt in my spine that is causing that. Since the headaches seem to be gradually improving (shorter and less severe each day), she's hopeful that it will heal itself, if I don't put too much strain on it this week. She also ordered some nausea medicine for me, and talked to me about the importance of taking pain medicine at regular intervals (rather than waiting until it's unbearable). Oh yeah, and she said caffeine is good for headaches, too. </div>
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So, for the past three (incredibly long) days, I have been laying down, binge-watching "<a href="http://www.imdb.com/title/tt0934814/" target="_blank">Chuck</a>," reading books, listening to music, and taking my meds like a good little patient. I must also say I've had some exceptional company, too - thank you to all of you who have come by to eat with me, hang out, care for me, pray with me, and spend the night with me. You have kept me from going crazy, and reminded me that I am not alone in this.</div>
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This morning, my initial bad headache only lasted about 10 minutes, I had a delicious cup of Earl Grey tea, and then I realized that I feel different - but in an old, familiar way. I feel more like myself - happier, more energetic, stronger, and more focused. I celebrated by playing a round of "Words with Friends" on my phone and beating EVERYONE. (Maybe not everyone, but it felt like it!) Also, I celebrated by writing to you. (Don't you feel special?) I'm still going to take it easy today and tomorrow, because I begin work next week, and would like to be at my best. But it is encouraging to feel the joy and hope reviving in me. </div>
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I mentioned emotional battles, and one of the biggest is doubt and fear. Did I make a huge mistake in all this? There have been so many moments in which the solution seemed obvious - <i>just quit while you're ahead, it's not worth it, and no one would blame you if you backed out of this now. </i>Failure has felt like a reasonable option this week, and that is scary. But the other day, Kevan read to me over the phone - he read "The Snow Sand" scene, from <i><a href="https://www.amazon.com/dp/B003IEJZRY/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1" target="_blank">The Princess Bride</a>. </i>It is one of our favorite parts of the book, and we often read it to each other in times of distress. It's too long to write it all out here, so I do recommend you get your own copy to read (this scene is nestled in the middle of chapter 5), but I will end this post with just a few lines from it that have helped me through the difficulties of this week: </div>
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<i>"To release the vine was truly madness. There was no possibility of forcing your body all the way back up to the surface. A few feet of ascension was possible if you kicked wildly, but no more. So if he [Westley] let go of the vine and did not find her [Buttercup] within a finger snap, it was all up for both of them. Westley let go of the vine without a qualm, because he had come too far to fail now; failure was not even a problem to be considered... he reached out blindly with both hands now, scrabbling wildly to touch some part of her, because failure was not a problem; failure is not a problem, he told himself; it is not a problem to be considered, so forget failure; just keep busy and find her, and he found her..." </i></div>
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Through Christ, I am strong and courageous and victorious - even as I lay on my back and wait for equilibrium to return, I remind myself that failure is not a problem to be considered - press on and don't look back! The adventure continues ahead! </div>
Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-41058907385236575802017-08-06T22:57:00.000-04:002017-08-06T22:57:05.479-04:00Three days laterMy first couple days of recovery were pretty good. I mean, I was tired and in some pain, but no more than I really expected. But today was different... today was not a good day.<br />
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I have been trying to wean myself off the hydrocodone pain meds, stretching it out to six or seven hours between doses yesterday, and then being able to sleep through the night last night without it. When I woke up this morning, I had a feeling I'd be sore, and I was, so I took some more medicine before I got out of bed. As I was getting dressed, my head started to ache all over, so I could hardly stand light or sound. The doctors said I would likely experience headaches because of the loss of spinal fluid, and that laying down would help. So I reclined in my chair for a while and felt better. I decided to get up and have some breakfast, but the headache instantly came back and worse, I felt nauseous.<br />
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From there, the day got worse... getting sick multiple times, having migraines, sleeping it off, not having energy for anything else... it's about as close to experiencing morning sickness or chemo side effects as I can imagine. I don't know how accurate that is, and I'm truly sorry to those who have endured those things and know I'm not even close, but it makes sense to me - I have this foreign object inside me, and a new cocktail of medicine that I've never had before, fighting against an enemy I've been tolerant of for 32 years. Who knows what's happening today on a molecular level with my body?<br />
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As the day ends, I'm feeling stronger and more stable. I've switched from Hydrocodone to Extra Strength Tylenol. I'm not nauseous, and my brain doesn't feel like its forcing its way through my head anymore, so that's good. Mom made my favorite homemade cookies, Dad worked a crossword puzzle with me, and we watched <i>Anne of Green Gables</i>, so body, mind, and soul, I am much improved.<br />
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Kevan sent me this quote tonight, from J.M. Barrie's book, <i>The Little White Bird, </i>which he said reminded him of an interaction between me and God right now:<br />
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<i>David: "Is it going on now?" </i><br />
<i>Barrie: "What?" </i><br />
<i>David: "The adventure." </i><br />
<i>Barrie: "Yes, David." </i><br />
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I don't know if my pain and sickness today was due to the surgery, the drug treatment, or the pain medicine, but whatever the cause, I know it was just part of the journey - part of this adventure that God and I are taking together.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com1tag:blogger.com,1999:blog-8131831972417608997.post-91227939006546189162017-08-04T15:37:00.001-04:002017-08-04T15:37:40.185-04:00It has begun!The surgery went very well on Wednesday. They had scheduled me to come in at 3:30, but they called at 12:30 to say they could take me as soon as I was able to get there. So, mom and dad and I left the house at 1:00 pm, and from there everything felt like it went so swiftly, I wonder now if it was just a dream.<br />
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The anesthesiology team was remarkable. After my pre-op appointment on Monday, they worked to put together some creative "plans A, B, and C" to ensure the smoothest and least traumatic scenario possible for my intubation and positioning. The surgeon told my parents afterward that because of the curve and twist of my spine, he put the shunt on the left side, and while it took longer than he anticipated (about two hours), he felt confident that it was secure and well-placed. I have a two-inch vertical incision with staples that will be removed in two weeks. They were able to take me off the ventilator before they moved me from the OR to the ICU. It was 6:15 pm when I remember waking up in ICU, just at the radiologist came to get an x-ray of my back. I got moved into my own room about 7:00. The doctors wanted to keep me overnight for observation, and there was talk that I might receive the first dose of Spinraza the next day before being discharged.<br />
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For the first couple hours in my room, I coughed quite a bit - my throat was irritated from the tube, and I had a lot of secretion in my throat and chest that I was having trouble clearing because of the pain and exhaustion. But a respiratory therapist came in and gave me a treatment, and then used a <a href="http://www.curesma.org/documents/support--care-documents/cough-assist-machine-health.pdf" target="_blank">cough assist machine</a> with me (such a life saver!), and after that I had no respiratory issues at all - the nurse even took me off the little annoying oxygen tube in the nose before I went to sleep! Praise God, the thing I was concerned about most ended up being no problem.<br />
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I did apparently bite my tongue during the procedure, and have the teeth marks to prove it, and my right hip is pretty sore from being stretched out while I was on my stomach, but these were so minor, I continued to praise God. Mom stayed with me overnight, and she played my music and read to me when I couldn't sleep. The nurses were very kind and helpful.<br />
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The next morning (yesterday), the surgeon came in and said everything looked good. Then my neurologist came to check on me, and we agreed to go ahead and administer my first dose. With the surgeon's help to know exactly where to put the needle, she was successful, and in less than two minutes, it was done! One hour later I was discharged, and I arrived home again at 1:00 pm.<br />
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The loading period for Spinraza is four doses in eight weeks, so I will go in again on Aug. 17 for dose #2. I don't know if I'll notice any difference in these next few weeks, but I plan to journal regularly about it all. My neurologist said that as far as she is aware, there are few hospitals around the country that are treating SMA Type 2 adult patients with spinal fusions. I am unaware of anyone else like me right now. Kevan said that one of his friends called me "Neil freakin' Armstrong," which made me laugh, but I do hope that what I'm experiencing will help to make this possible for others.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-66804484831310086302017-07-28T12:23:00.000-04:002017-08-04T15:03:37.359-04:00Take #2!For my personal assurance, I visited my pulmonologist this week, who knows me well. I explained to him the surgery I was considering, and about my concerns. He got a chest x-ray and spirometer test, and said that my pulmonary strength and health have been stable for the past year and a half. He believed that while the intubation was risky, that in my condition it was an acceptable risk. Just hearing him say that made me feel more comfortable. Then he said, "And of course, we can always pray!" and he prayed with me right then and there. That gave me the courage I needed to make my decision.<br />
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The surgery is now scheduled for August 2 - less than a week away. OK then, let's scale this fence!Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-40839981127260017032017-07-21T11:56:00.000-04:002017-08-04T15:03:17.126-04:00Scaling the fenceI had an appointment yesterday with a neurosurgeon at the hospital, to discuss a new course of action, recommended by my neurologist. The appointment was very informative, and I felt comfortable with the surgeon, but the whole thing still made me nervous.<br />
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He explained the procedure he wanted to do - a lumbar peritoneal shunt. He showed me a thin tube connected to a small bubble-like port. He explained that he would drill a hole through my fused vertebrae, to access the spinal chord, then insert the tube there, and fix the port just under my skin on my back. He said that because of the way my vertebrae are fused, there was no other way they could see to access my spinal chord. But in placing this shunt, my doctor would have easy access to the port, to draw spinal fluid and inject the Spinraza drug, sort of like an IV. This surgeon has done the LP shunt placement for many patients with similar scoliosis and fusion issues, so he felt confident that he could do this for me, even though I am the first patient at this hospital to receive this drug in this way. </div>
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The two things I was most concerned and anxious about actually had nothing to do with the shunt itself. The first thing was that I'd have to lay prone on my stomach for the procedure (which I haven't done in about 20 years) and that I would need to be intubated (which I've not had good experiences with in the past). Of course, the surgery wasn't completely risk-free either, what with risk of infection and loss of spinal fluid.</div>
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This all felt a bit like when <a href="http://conniesbowlofcherries.blogspot.com/2012/11/lessons-learned-in-backpack.html" target="_blank">my friends put me in a backpack</a> to carry me up a fire tower in a park in Indiana. I wasn't a bit afraid, just excited to do something new people I trusted. What I didn't write in that post (for legal and family purposes) is that when we arrived at the fire tower, just before sunset, we found that there was an 8-foot high fence topped with barbed wire that surrounded the tower and was locked. Before we could climb the tower, we would have to figure out a way over that fence. That's when I began to feel fear and dread, and second guess my ambition. </div>
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When I first started on this Spinraza journey, the stakes were low, and I felt no fear or worry. All that was required was a few minutes of discomfort, a few times a year. But this surgery felt like that 8-foot fence - it was something I hadn't planned on, and was more risk than I bargained for. But in order to experience the adventure, I'm going to have to experience the risk...</div>
Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-88208328141170035462017-07-12T11:33:00.000-04:002017-08-04T15:03:01.877-04:00Personal goalsI got to meet with my Biogen counselor today for the first time in person. He was in town to meet with some doctors at the hospital, and took some time to meet me at my favorite coffee shop.<br />
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While I sipped on my chai latte, he asked if I would mind sharing some of my history with him. Most of the patients he works with are infants, so he can't talk with them directly, and there isn't much to their life story yet. It made me realize again that I am in a small percentage of SMA Type 2 adult patients who are currently pursuing this treatment. So I happily shared my story, including a lot of what I wrote in my previous blog post.<br />
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Then he asked me about my treatment goals: "What results do you hope to see through this drug?" That's what I call the million-dollar question, and I told him about my struggles with having so little information.<br />
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He explained to me that the reason there aren't solid answers about results is that every SMA patient's weakness progresses differently. Even looking at the difference between my brother Kevan and I, who are close in age and are from the same immediate family and have the same diagnosis - we have had very different manifestations of our weaknesses, and have our own unique abilities as well as struggles. Thus, we would have different responses, and different response rates with the drug.<br />
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He said that a good first-step goal is to stop the progression of the disease. This is the top priority! If the progression stops, I can stabilize and maintain my current abilities. From there, I could have new goals for rebuilding and restoring lost strength. I would create a timeline of my weakness, and work out goals in reverse. For example, what could I go 6 months ago that I can't do now? So for me, my hands and throat are the areas I've experienced the most recent weakness in, so they would be the muscles I would work to restore first.<br />
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That conversation really helped me! At least now I have some initial goals. Now, if I could just get started with the treatments...Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-13796616457710916092017-07-09T11:01:00.000-04:002017-08-04T15:02:50.351-04:00Introspection in the pauseIt's been over two weeks, with no decisions made and no plans confirmed. The "radio silence" has given me more than enough time for introspection. Last night, I talked to Kevan on the phone about my anxiety, and he gently said, "You know you don't have to go through with this." He's right... So why do I want to do this? Is it worth all the waiting, the pain, the risk, the complications? If there isn't dramatic change, if I don't see remarkable differences in my abilities and strength, why would I put myself through this?<br />
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If I'm not expecting a miracle, what <i>am </i>I expecting? And why am I <i>not </i>expecting a miracle? Something I've prayed for 33 years is now here - why shouldn't I expect a miracle?<br />
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I don't need a miracle... not really. My life and my faith have grown strong on the foundation of God's power being made perfect in my weakness. I've had years and years to learn peace and joy in my diagnosis, and many of my role models are incredible people who live with disabilities. I like to think I've become strong by "growing weaker with grace." I can honestly say that I am OK with who I am, who God's made me.<br />
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And yes, God's made me with weak muscles and a crooked back. But he's also made me with an adventurous spirit that doesn't want to resign itself to the fate of a medical diagnosis as long as there is hope. In the quiet moments when I lay still in my bed, I often imagine and dream what it would be like to walk, run, dance, drive, stretch my body, wash my hair, cook a meal, roll myself over in bed... These are just some of the things I truly long to do... things I believed I would never do in this life.<br />
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But what if... I know there is no promise or guarantee, and no doctors have even suggested this to me, but what if I do have the chance to do even some of these things in this life? How would it change me, my relationships, my faith, my testimony? How would it bring glory to God? Lord, you know I want it to. There is so little that the doctors know at this point, but the unknown possibilities are exciting to me, because it means there is no limit to what God could do.<br />
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I'm going to reset and try this again. This time, I will face these risks and fears for the sake of a new, exciting, grand adventure. My faith, trust, and hope is not in medicine, but in God alone. I know he can find a way to make this treatment possible, and I know he can work it into my body in miraculous ways, and I know he will use this entire experience to deepen my faith and bring glory to him... and I trust that people I know and love will turn their hearts to Jesus and praise him because of it.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0tag:blogger.com,1999:blog-8131831972417608997.post-23778655013779721392017-06-23T20:43:00.000-04:002017-08-04T15:02:38.976-04:00Disappointed, but not in despairWell that did not go as any of us hoped. The radiologists had trouble finding an injection site where they could draw spinal fluid and inject the drug. Three different doctors attempted three different angles, and multiple punctures over two hours, with no success.<br />
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And it hurt. A lot. I went into the procedure knowing that it would. Like Westley from <i>The Princess Bride, </i>I figured I could "cope with torture" - especially if it was brief and successful. I expected it to take a few minutes, and that I'd be out of there in an hour, with a miracle drug flowing through me. But after an hour of unsuccessfully poking around inside me, I started to moan, then cry. My resolve was melting. I gritted my teeth and gripped my pillow and tried to think of Captain America and Westley, and begged God to guide the need to the right spot so this could all end well.<br />
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But He didn't. With every new poke, I became more disappointed, discouraged, scared, frustrated and angry - not with the doctors, but with God. After all, my hope had been in Him, and now everything that hurt seemed to come from him. He'd gotten me into this, but wasn't getting me out. I felt abandoned and alone. Another hour of pain dragged on before I said I didn't want to continue (the doctors had been willing to try as long as I wanted).<br />
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The doctors decided the best next step would be to get a CT scan, for a clearer image of my spine, so they could regroup and work out a new approach. They took me right in for the scan while I was there, and the staff kept telling me how brave I was. But I didn't feel brave.<br />
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I felt weary and raw, but deep inside I knew that my attitude and perspective was wrong. God heard me, saw me, and loved me like he always has, and just because he didn't do what I wanted him to do, when I wanted him to do it, doesn't mean he isn't in control and isn't working it out. He is, and he will... I know.<br />
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The CT scan results came back today, and the bottom line is that there is just no space between my vertebrae to put the needle in, because of my fusion. The needle was literally hitting an impenetrable concrete wall. The radiologists are not going to be able to do the injection. But my neurologist is awesome, and has not given up yet. And I don't think I've given up either.Connie Lynnhttp://www.blogger.com/profile/12344660025562358149noreply@blogger.com0