tag:blogger.com,1999:blog-56682038645658498522024-03-05T02:13:57.141-05:00Self Medicating With YarnDealing with RSD/CRPS, Fibrous Dysplasia, and autoimmune disease one stitch at a timeCassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-5668203864565849852.post-1312544306444333452014-08-20T13:36:00.002-04:002014-08-20T13:51:57.889-04:00"I like her sticks!"<div class="yiv6658578339MsoNormal" id="yui_3_16_0_1_1408547391316_2414" style="background-color: white; font-size: 12pt; margin: 0in 0in 0.0001pt; padding: 0px;">
<span id="yui_3_16_0_1_1408547391316_2415"><span style="font-family: Arial, Helvetica, sans-serif;">A consistent issue all disabled people deal with is judgmental strangers. Sometimes the snap judgments are good, some are bad, and some are downright horrific and make you want to bang your head against a wall.</span></span></div>
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<span id="yui_3_16_0_1_1408547391316_2412"><span style="font-family: Arial, Helvetica, sans-serif;">One of the weirdest things I get from strangers is, “What’s wrong with you!” Note the lack of a question mark- this is often not a question, but rather a demand that I inform people of my life history. Why they feel the need to know quite so emphatically, I do not know, but that’s humanity for you. There’s always a few odd balls. Depending on my mood, I’ll sometimes give a short answer that’s true but way oversimplified, a curt stare, or, if I’m really feeling cantankerous, “I was bit by a shark- what’s you’re excuse?”</span></span></div>
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<span id="yui_3_16_0_1_1408547391316_2262"><span style="font-family: Arial, Helvetica, sans-serif;">The best comments I've ever gotten, though, have both been from kids. One was a little girl, about 4 years old, who asked me why I “used sticks like Grammies.” I told her my leg didn't work very well, but I made sure I got the cool sticks- purple ones with springs in them. The little girl then solemnly checked out my crutches, walked back to her mother, and informed her, “I like her Tigger legs! They're <b id="yui_3_16_0_1_1408547391316_2304">cool</b>.” I now inform kids that my crutches are my super-secret Tigger legs.</span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">My awesome Tigger Legs, complete with purple and white decals</td></tr>
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<span id="yui_3_16_0_1_1408547391316_12574"><span style="font-family: Arial, Helvetica, sans-serif;">The second comment was made last weekend by an adorable tot while I was at a local mall. I didn't even catch the kiddo checking out my crutches, my mom did, and she brought it to my attention. (Little kids are adorable as they try to solve this bizarre riddle the world has presented them with.) This particular little girl was about 5 years old and was dressed up in her Sunday best. After watching me walk with awe for a moment, she hurried to catch back up to her mother where she blurts out, “I like her sticks!!”</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Now if we could get the whole world on that same wave length, life would be awesome.</span></div>
Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-63337913642330362262014-08-05T23:49:00.001-04:002014-08-05T23:49:06.890-04:00Not Dead Yet!<div class="yiv3355977984MsoNormal" id="yui_3_16_0_1_1407294004257_2225" style="background-color: white; padding: 0px;">
<span style="font-family: Arial, Helvetica, sans-serif;">I know I’ve been gone for a while now, and I'd like to apologize for that. Things got quite crazy around here, but in a good way, and it was leaving me too tired to contemplate writing when I got home.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So, for funsies, I’ve decided my first post back needs to be about happy stuff.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">1) I GOT A JOB!!!!!! A good job. A job I *<b>like</b>*. Very important, that little L-word. I'm now a designer, marketing assistant, and office manager for a small engineering firm. I'm making more money than at my last job, which is great because it means I'll now be able to afford the majority of my day-to-day medical bills on my own. A lot of joy goes with feeling less dependent on others.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">2) I've stopped gaining weight! I've only lost about 2 lbs of the 20 lbs I put over the winter, while recovering from 2 surgeries only weeks apart. But I'm just glad to have stopped the gaining and be headed in the right direction.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">3) Had my annual neurology checkup with the guy who specializes in Movement Disorders. For years, I tremored so hard I couldn't hardly write my own name. I had massive myoclonic jerks, and lots of them. But for the second year in a row, I'm considered Stable and doing Very Well. I had actually gone a few months with zero tremoring/jerks and have had a tiny uptick lately, but we're assuming that's due to stress on my nervous system from other things being weird, and it's minor enough as to not cause any issues with day to day living. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Biggest and Bestest (that is too a word!) of them all? I had my annual orthopedic checkup. </span><span style="font-family: Arial, Helvetica, sans-serif;">Because</span><span style="font-family: Arial, Helvetica, sans-serif;"> I'd been having some bone pain, we went into it with a worry of possible fracture in the femoral neck. I've broken that hip 3 times before, as I'm one of the "lucky" fibrous dysplasia patients who experiences frequent fractures. I had been in touch with my doc, so before my appointment we had already gone ahead and done xrays and a full body bone scan. First off, the bone scan confirmed that my <a href="http://selfmedicatingwithyarn.blogspot.com/2014/05/dictionary-of-my-life.html" target="_blank">Fibrous Dysplasia</a> is indeed Monostotic and not Polyostotic. Believe it or not, no one had ever bothered to check that. Second good thing, no fractures. But absolute best of all? The scan showed that my cyst is 100% stagnant (a Very Good Thing- this means it's not actively growing) and there's zero sign of <a href="http://www.mayoclinic.org/diseases-conditions/avascular-necrosis/basics/definition/con-20025517" target="_blank">Avascular Necrosis</a>!!!! I can actually go 2 entire years before I need x-rays again!!!! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I'm now far enough into work that I can manage to take care of myself when I get home, which means posting should become more frequent again. I do want to take a moment, though, to thank the various readers I've been in touch with since my last post 2 months ago. You guys have helped me remember why I take the time and energy to do this after a long day of work, and I'm excited to get back to over sharing again. ;)</span></div>
Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-55460711999270194622014-06-09T02:36:00.001-04:002014-06-09T02:36:27.034-04:00Still a 20-something<span style="font-family: Arial, Helvetica, sans-serif;">One thing every disabled person I know struggles with on some level is socialization. Let's face it: simply getting around and performing ADLs (Activities of Daily Living) is more exhaustion when you're struggling with a portion of your body not working. The more exhaustion and pain a person faces, the harder it gets to get out there and have a normal social life. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">From the get go, I've refused to let my health issues stop me from getting out there and having fun on occasion. I know this isn't possible for every person who struggles with disability, but so far, it's been possible for me. I make sure I make it to library Knitting Group days and I occasionally hit up the local spinning group for some fun spinning wheel and <a href="http://en.wikipedia.org/wiki/Spindle_(textiles)" target="_blank">drop spindle</a> chatter. But some of my favorite memories? Having a night on the town with my girl friends. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Our usual bar of choice is a local dueling piano bar. I can't drink, but watching drunk people try to sing is flat out hysterical, especially when you add in the antics of the piano players. Last night, however, we tried something different- we went to a drag show. Now, despite the fact it was a lesbian bar, I assumed (and I know my girlfriends assumed the same) that it would men dressed as women performing. Turns out, it was women dressed as men, mostly, with only a single guy dressed as a woman. It was still fun, just very different music than I expected. All of the performers did a great job, especially the woman who danced last, despite it being her very first night on stage. My girlfriends and I sang along, slipped the performers singles (it's apparently tradition when watching a drag show to give the performers a single dollar bill when they dance by), chugged pop to wash the smoke out of our throats, and gabbed.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Jessie and I at the show. (Jessie is on the right, I'm on the left.)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I did learn something new about my body, though. I'm not normally around cigarette smoke. In fact, I'm allergic, but thanks to spring time allergy meds, I didn't react beyond the burning throat and lungs. The big surprise of it, though? Apparently, the exposure to 7 chain smokers in one tiny bar for 2+ hours will set off my <a href="http://selfmedicatingwithyarn.blogspot.com/2014/05/dictionary-of-my-life.html" target="_blank">CRPS</a> and trigger a flare in pain levels. I'm hoping this is temporary and I've spent the day resting to see if it will help. Fingers crossed. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com5tag:blogger.com,1999:blog-5668203864565849852.post-35951681443263641732014-06-01T01:54:00.000-04:002014-06-01T01:54:31.582-04:00The Sleep Saga<span style="font-family: Arial, Helvetica, sans-serif;">A big part of chronic health issues for many people is issues getting enough sleep of good quality. For me, I've never been a great sleeper. I was that kid in high school who only slept 3-6 hours per night. Thankfully, I was a book addict, so I did a lot of middle of the night reading during those years. Once the CRPS kicked in, what little sleep I was getting became of extremely poor quality. (That's standard for CRPS patients- we can't enter the deeper cycles of sleep, including REM, so we do not dream and the sleep is non-restorative.) </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So during my checkup with my Primary Care Provider (PCP) last week, I brought up some sort of sleep meds. She didn't like the first option I presented, which honestly, I wasn't a huge fan of either. I'm honestly a bit afraid of the odd side effects of some of the newer sleep aides on the market, so I wanted to avoid them for the moment. My PCP brought up an older medication, which was initially developed as an antidepressant but was found to be better at bringing on sleep than aiding with depression: <a href="http://en.wikipedia.org/wiki/Trazodone" target="_blank">Trazodone</a>. A portion of patients on trazodone also see an improvement in neuropathic pain, so I figured I'd give it a shot. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Tonight is night number 3 in this experiment. Nights 1 and 2 went fabulously. I went to sleep by 2 am (compared to my prior bedtime of 6 am, I'm thrilled with that) and I woke easily, to my alarm clock, feeling refreshed. After not getting good sleep for a decade, it's a bit surreal to wake up feeling refreshed. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">And now I'm off to bed to enjoy my third night of proper sleep. I can't wait. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-84467115835331243342014-05-28T05:16:00.000-04:002014-05-28T06:12:59.272-04:00I have a confession<span style="font-family: Arial, Helvetica, sans-serif;">My deep, dark secret isn't really much of a secret. Truthfully, I'd describe it as a well-known fact. It's pretty obvious if you've ever heard me discuss cultural traditions. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">My "confession"? I'm Southern. I was born and raised mere minutes from the <a href="http://en.wikipedia.org/wiki/Mason%E2%80%93Dixon_line" target="_blank">Mason-Dixon line</a>. I'm from the suburbs of a large city, so I have zero accent 99% of the time. But so much of the cultural traditions I grew up are decidedly unique to the southern portion of the US. This means I've always known home canned jam is better than store bought, I know the true meaning of the saying "bless her heart!" (it's not nice...), and all emotions, be it happiness, worry, sadness, grief, celebration, or anger, are all dealt with the same way: with food. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">So when I was told today that my mother injured herself yesterday and her knee is now in a rigid brace while they figure out what ligaments/tendons/muscles are torn, I promptly turned my car around and headed to the grocery store. She and my father are both currently working two jobs (mom used to be a teacher and now tutors in addition to her job, and my father is an adjunct professor in addition to his regular job), so having time to cook good, healthy food is hard enough already. Add in Mom being down for the count with the knee, and I knew they'd be stuck doing a lot of eating out, which they are trying to avoid. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">I got down to business, and in a matter of a couple of hours I had a large insulated cooler bag stuffed full with food: pulled chicken barbecue with homemade sauce, coleslaw, pasta salad, fruit, and a frozen, easy cook meal for later in the week (chicken fajitas). </span><div><font face="Arial, Helvetica, sans-serif"><br></font></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLD8sNt7r45tNKxgec5BiMSEojHo9wEIMj1ymcwgXCAhPEDPuXvjfSAGQuQ1qE_YJez6-rfvMpaFYivvCUfdFutVklGn3qNpVtS7__-SG_v7g5mU8TySecqCmA0MKssGicmA22J3zZKQZj/s640/blogger-image--2138019709.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLD8sNt7r45tNKxgec5BiMSEojHo9wEIMj1ymcwgXCAhPEDPuXvjfSAGQuQ1qE_YJez6-rfvMpaFYivvCUfdFutVklGn3qNpVtS7__-SG_v7g5mU8TySecqCmA0MKssGicmA22J3zZKQZj/s640/blogger-image--2138019709.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">This is just the normal, right thing to do in the way I was raised. It's the same way many of my friends and neighbors think. Heck, the sweet elderly lady up the street feeds me just because she can! But what I don't understand is why this ISN'T the normal way of doing things in other areas of the world. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">Think about it: when your child/spouse/parent/friend/whoever is in the hospital, do you want to cook? What about when you've just broken your leg? Or when a loved one dies? Most of the time, cooking is the last thing on peoples minds during times of stress. But it's during these times when a good, nutritious meal is most important. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">So I leave you, my readers, with a challenge. Give it a try. Next time there's a tragedy, illness, or even a cause for celebration (who has time to cook when a new baby enters the family?), feed your friends and family. Make a good, healthy meal and drop it off. I can guarantee you'll bring a smile to someones face and let the people who are important to you focus on the important events unfolding in their life. </span></div>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com1tag:blogger.com,1999:blog-5668203864565849852.post-65659382372887123422014-05-26T03:03:00.000-04:002014-05-26T03:19:52.026-04:00Puzzle pieces<span style="font-family: Arial, Helvetica, sans-serif;">I perpetually feel like I'm breaking, like another piece of falls out of place with every passing day. Like a small subset of patients with <a href="http://selfmedicatingwithyarn.blogspot.com/2014/05/dictionary-of-my-life.html" target="_blank">CRPS</a>, mine likes to spread. It started in the outside of my upper right thigh, only, on Sept 4, 2004, at 2pm. The injury that triggered my CRPS (most cases are triggered by an injury) was a fall down 1 stair. Not a flight of steps- just a single, little stair. Further injury, of any sort, to the body can make the disease spread, and for me, surgery is a sure-fire trigger. If you think back over the last few months, you'll remember that I've had 2 surgeries since the end of 2013. Guess what that means?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Yep. It's now full body. The spread of the CRPS into my arms has been documented by 3 pain management physicians in the last two months, and I was referred for an aggressive series of Stellate Ganglion Blocks. These injections are basically the same thing as the <a href="http://selfmedicatingwithyarn.blogspot.com/2013/11/crps-treatment-part-ii.html" target="_blank">SNB</a>'s I've been having done for years, just into my neck instead of into my back. My regular Interventional Pain Management doc, the guy who has done my back injections for years, sent me to his boss to have the series done. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The hope is that we will be tackling this soon enough to bring it to a halt and get my arms into remission. At this point, I've had 2 injections done and my third is scheduled for 2 weeks from now. Honestly, I'm sure not at all sure if these will ever come close to buying me a remission. My current guess is no. But I'm certainly going to try, and if they help, then that will make me a candidate for a second <a href="http://selfmedicatingwithyarn.blogspot.com/2013/11/treating-crps-spinal-cord-stimulator.html" target="_blank">SCS</a> trial, this time in my neck. (And yes, even if you already have a SCS in a different portion of your spine, you still need to go through a trial again to get a second pair of wires implanted.) </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In the interest of full disclosure, when I started writing this post 4 weeks ago, the title was, "I swear I break a little more every day". Then, when I was out running errands a few days ago, it dawned on me- while things certainly can, and do, get worse on me on occasion, I finally have the needed tools to also help myself cope. Instead of being a crumbling piece of china that will never go back together, I'm more like a jigsaw puzzle, that both comes apart easily and can be slowly, and carefully, pieced back together. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: xx-small;">Image from EngineeringDaily.net</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">That certainly doesn't mean I'll ever be normal, fine, or even just not disabled. Far from it. Just like a puzzle is never again a solid sheet of cardboard after they cut the pieces apart. But puzzle pieces can be laid next to each other and form a very fragile semblance of a whole picture. And now that I'm finally working with a knowledge of what all the pieces are that exist out there, I can slowly start putting back together a life for myself. Just knowing that helps so much when things seem dark.</span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-68544201084069927532014-05-19T03:04:00.000-04:002014-05-19T03:04:14.456-04:00Sheep!<span style="font-family: Arial, Helvetica, sans-serif;">The <a href="https://www.kentuckysheepandfiber.com/" target="_blank">KY Sheep and Fiber Festival</a> was this weekend, and I managed to snag a ride with friends from my knitting group. As always, it was a blast! I got to shop, enjoy the colors and textures everywhere, see sheep, pet llamas and alpacas, and meet some online friends in person finally. One of my favorite parts of fiber festivals is the amount of non-wool options out there. I'm mildly allergic to wool, so I can't work with it (brief contact is okay, but no wearing it or knitting with it). But at places like the KYSFF? Racks of alpaca and silk roving for spinning! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I wound up choosing to buy some dyed, unprepped alpaca locks, instead. I've never spun straight from the lock, so this will be an experiment for me. I want to eventually turn the brown/dark/red batch into fingerless gloves. No plans yet for the pinks/blues/purples. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I also managed to snag 2 skeins of <a href="https://www.etsy.com/shop/WollesYarnCreations" target="_blank">Wolle's Color Changing Cotton</a>. This stuff is very popular in the world of knitters and as it's all handmade by a very nice woman, there are limited quantities each month. Getting it online can be tricky, especially the big skeins made for making shawls from, so I was thrilled to snag a Shawl Skein (185g) and a regular size skein (100g) at the fair. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Ms. "Wolle" herself posed for a quick shot of her sweater, knit from her fabulous yarn.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Oh, and I got to try weaving! Decidedly fun. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8MRGs9_0T5P9jtrdeJhpRDlbBMU5VZG2eNTYgJ_yhHxd_OktJViHB2wR42g75Mtz7hnyoZfvCpDfEa61o0C0vCKIgQS7y1XvY6iVV_QD9kuEB0BIVTLWn9OmtnNKJ5eCvVcWtQiaYxNsR/s640/blogger-image-2071798950.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8MRGs9_0T5P9jtrdeJhpRDlbBMU5VZG2eNTYgJ_yhHxd_OktJViHB2wR42g75Mtz7hnyoZfvCpDfEa61o0C0vCKIgQS7y1XvY6iVV_QD9kuEB0BIVTLWn9OmtnNKJ5eCvVcWtQiaYxNsR/s640/blogger-image-2071798950.jpg" /></a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The day wound down with some Bunny Therapy (it was soooo hard to not give this fluffy little guy a new home, as he was up for adoption)...</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">... and some fluffy, and not-so-fluffy, sheep. The naked sheep always look so fed up with us silly humans. </span></div>
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Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-88991391636214761512014-05-12T04:24:00.001-04:002014-05-12T04:24:02.277-04:00Celebrating Mom<span style="font-family: Arial, Helvetica, sans-serif;">Like all 20-somethings, it wasn't so far back in my past that my mom and I were mostly communicating with yelling and furtive late night/early morning notes (to avoid crossing paths). I was becoming sicker with every passing day in my late teens/early twenties, was enrolled in an insanely difficult college program, felt like I had nothing left to keep living for, and like many hormonal, stressed, and depressed teens, all of this turned into a lack of a good relationship with my mom. Thankfully, as my life evened out, and a glimpse of light began to appear in the end of my tunnel, that relationship that had been missing between my mother and I developed. She went from being The Enforcer to being a friend. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">My parents, on their 25th wedding anniversary:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I know many people for whom the relationship with their parents is sorely lacking. I even know a few who have cut all ties with their parents for their own mental health. And I'm glad that my relationship with my mother is growing stronger with time and not weaker and more strained. Seeing what these friends have been forced to give up (for while most of them never had a decent relationship with their parents, there is still the hope and desire for that relationship that is lost when the ties are severed) makes me all that much more grateful for what I have. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This year has not been an easy one for my mother. She was diagnosed a few months back with Crohn's Disease. Crohn's is an autoimmune disease where the immune system begins to attack the digestive track, causing large lesions to appear. The lesions cause a whole host of issues, from malnutrion and anemia to exhaustion and infection. In addition, Crohn's also causes a range of other symptoms, including inflammaory arthrtis, a <a href="http://www.nlm.nih.gov/medlineplus/ency/article/000881.htm" target="_blank">rash</a> that looks and feels like wide spreading bruising, muscle aches, damage to mucus membranes (causing dry eyes, dry mouth, etc) and more. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Mom has tried a minimum of 4 rmedications at this point, and has already been moved to bimonthly infusions of the biologic agent Remicade (the same medication I'm on for my autoimmune issues, oddly enough). She's in pain, sturggling to figure out what she can safely eat without getting even sicker, and trying to adjust to life wth a serious chronic illness.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">And through it all, she's been here to take care of me. Just since January 1st of this year, she has moved into my home on 2 seperate occasions to care for me after surgery. She's bathed me, done my laundry, cooked for me, put up with my griping, gotten me out of the house when I hit my limits with Cabin Fever, and even cuts my grass. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Her help, love, and care, and our improved relationship in these last few years, means more to me than I can really put into words. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Mom, if you're reading this, I love you and Happy Mother's Day. Oh, and don't let Dad eat your cookie dough*! Sadly, I couldn't find any cookie dough theft alarm systms to include with the dough for your gift, so you'll just have to watch him near the freezer. ;)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">(My level of Normal-ness is beginning to make more sense now, isn't it?)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">* You can make cookie dogh and freeze it on trays/plates in individual cookie sized balls, then put the balls in a container once they've hardened up. When you want to bake, just let them thaw out on the cookie tray, then bake like normal. Not an ounce of taste difference and it lets you make just a few cookies at time. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">N.B.: I apologize for any typos. My actual computer is out of commission for the moment and the iPad app for writing posts is extremely iffy, as is the post editing page on Blogger on an iPad. </span></div>
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Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-4591196686676890282014-05-09T03:37:00.000-04:002014-05-09T03:56:44.414-04:00Spring is in the air<span style="font-family: Arial, Helvetica, sans-serif;">I've never been a big fan of winter. Far too cold for my tastes. Spring has always been my favorite time of year- not too hot, not too cold, not yet sticky with humidity. This year has been especially nice, since I have my own yard in which to plant flowers and start a garden (I bought my house late enough into the spring last year to make it tough to do any of this). </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">My front flower beds have been in need of an overhaul, for several reasons. First off, the houses prior owner was a bachelor who did not enjoy gardening, and the landscaping made that obvious. Every since thing out front was a shrub. No flowers, aside from a few bulbs and a phlox leftover from the owner before him, and those the prior owner moved around haphazardly while doing yardwork. Add to that one bush dead from an attack of the Mold Spores of Doom and the phlox taking a heavy hit when we tore out and repoured the front walk, and you had some very sad flower beds indeed. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">With money being tight, I didn't want to buy many plants. I did cave and buy 3 of a purple perennial that grows to about 12" tall and has a single little purple flower on the tip of each stem. Thank to brain fog, I can't recall the name of the plant tonight, but they are very pretty and do well in the weather around here with minimal watering needed. My aunt gave me a few flowers from her own yard that needed thinning out, plus some snapdragons she bought for me, and my neighbor gave me a decent sized hosta when she thinned her own plants. All in all, I'm quite happy with how my front flower beds have come out.</span><div><font face="Arial, Helvetica, sans-serif"><br></font></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_E5Gt_u1fgWk0KsVx-fLwQlgys6JpFwXw5fAg-pIhS1MobudRD8lzLPjYoeJwnfHscegwHms2HkMcPXwNVJ66Sz1EFraD2l3Nt5GgWMGAU9mPpNe7PUYqRVQLW_byFukBQwGKAE1vCyHc/s640/blogger-image-879053148.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_E5Gt_u1fgWk0KsVx-fLwQlgys6JpFwXw5fAg-pIhS1MobudRD8lzLPjYoeJwnfHscegwHms2HkMcPXwNVJ66Sz1EFraD2l3Nt5GgWMGAU9mPpNe7PUYqRVQLW_byFukBQwGKAE1vCyHc/s640/blogger-image-879053148.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfDzqGaK1jPH5juJ_Mh2YFwhAayTA8nWgFXhOu3Q9Y6NPToRQU0D7-xl1xpV1Q4TDyhFhxGJ1MoV7g7rzFF-RtDfQMvjXvYOFM22g_X1OPr_wCsZfQ76OX8pfcRtPgKUBsrIpiX9ulHviw/s640/blogger-image-103229223.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfDzqGaK1jPH5juJ_Mh2YFwhAayTA8nWgFXhOu3Q9Y6NPToRQU0D7-xl1xpV1Q4TDyhFhxGJ1MoV7g7rzFF-RtDfQMvjXvYOFM22g_X1OPr_wCsZfQ76OX8pfcRtPgKUBsrIpiX9ulHviw/s640/blogger-image-103229223.jpg"></a></div><br></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">Next up was starting the veggie patch out back. I wanted to do some potatoes, more carrots, garlic, and onions this year, so I got my hands on various pots and huge plastic containers to use as deep pots. These large totes are fantastic planters- just drill some holes in the bottom, prop up on some scraps of lumber to allow them to drain, and fill with dirt. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">Prepping the totes:</span></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijBuqVrYxsgxA2iCqW34Iq9dwbJhmV29ygJQTnUlAjqz9Khr7ixkCZbHJCXt-s7BUSeNaK21ffoiP_pPRGiDI5J0AsvxJgA4HIE44t6Lj64yhn-4ZqvoCz7D-pTltQuxBKkCgt0G6JeLcE/s640/blogger-image--383544647.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijBuqVrYxsgxA2iCqW34Iq9dwbJhmV29ygJQTnUlAjqz9Khr7ixkCZbHJCXt-s7BUSeNaK21ffoiP_pPRGiDI5J0AsvxJgA4HIE44t6Lj64yhn-4ZqvoCz7D-pTltQuxBKkCgt0G6JeLcE/s640/blogger-image--383544647.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0rC9pqYajbGLv-xSxzbHJoWPDxamC2BnHnF1KouCVZXwDGjGI1nCujnH7p6v5OWWf9nAdNv03tJ9n2Fc3Ol5284ifbna4YatFifCSu2c5pMTYZXNTbOAsQwS_9OYF7_nbhL8p-PtfBo5m/s640/blogger-image-194166961.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0rC9pqYajbGLv-xSxzbHJoWPDxamC2BnHnF1KouCVZXwDGjGI1nCujnH7p6v5OWWf9nAdNv03tJ9n2Fc3Ol5284ifbna4YatFifCSu2c5pMTYZXNTbOAsQwS_9OYF7_nbhL8p-PtfBo5m/s640/blogger-image-194166961.jpg"></a></div><br></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">All planted and ready to grow!</span></div><div><font face="Arial, Helvetica, sans-serif"><br></font></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbVtp6tej0xEdwKx5tM9VDhG2NmITDfomb9SegM8bUBoDszLOKRZ080y264E1-sYo1y3jBvfaC_p7e5nJUYRM3SFH4GwOZ-iQd4oGAviwvk0lh6xtr3HEOSsRpYb3EZIH0yIYW-iynNXGu/s640/blogger-image-1624442214.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbVtp6tej0xEdwKx5tM9VDhG2NmITDfomb9SegM8bUBoDszLOKRZ080y264E1-sYo1y3jBvfaC_p7e5nJUYRM3SFH4GwOZ-iQd4oGAviwvk0lh6xtr3HEOSsRpYb3EZIH0yIYW-iynNXGu/s640/blogger-image-1624442214.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">The other big adventure going on right now? I've re-started Physical Therapy. PT is always a LOT of work, but very much worth it. It helps me maintain muscle mass (which has a tendency to vanish on me, between the CRPS and the scar tissue from all the surgeries), it helps keep my pain under control, it keeps me flexible, and more. This time around, in addition to the normal strengthening goals, we're working on improving my walking, including trying to get me down to using 1 crutch for real distances. Yesterday was my first appointment for this round and while I didn't hurt any extra last night, I'm paying the price today with overly tight muscles across the front of my thighs. I know from experience that that will lessen in the next few weeks, but right now my shuffle looks more like a drunk zombie lurch than a graceful shuffle. Now to just hope no one thinks I'm trying to eat their brains... </span></div>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-49043466026815374642014-05-02T02:10:00.000-04:002014-05-02T02:11:59.898-04:00Dictionary of My LifeLet's face it, I live in a world of TLA's. That's Three Letter Acronyms ;) . I never have posted a comprehensive list of what these medical terms and TLA's I use so often mean. Many of those coming to my blog are familiar with some of these health issues, but not all, and certainly not all of the various treatments I'm on for everything. So, a big bad list of everything! Okay, it's not <i>quite</i> everything, but I'm going to try!<br />
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<b>RSD/CRPS</b>- A neurological disease in which the sympathetic nervous system gets caught in a pain loop and winds up basically burning itself out. This causes extreme pain (CRPS holds the dubious distinction of being the most painful non-terminal illness known to science), blood flow issues and skin discoloration (what I call the Zombie Effect, or purple and white mottling, and Neon Pink, or spots of bright, bright red, are the most common), temperature regulation issues in the affected region(s), skin, nail, and hair growth issues, hypersensitivity to all stimuli (also known as allodynia), a variety of other issues.</div>
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<b>Fibro</b>- Short for Fibromyalgia Syndrome, or FMS. A neurological disease in which the nervous systems become hypersensitive to all stimuli. The overactivity in the nerves causes widespread pain. Issues like headaches, IBS, tremors, myoclonic jerks (a type of nerve malfunction that causes major muscle spasms strong enough to move the entire body), and more can occur with fibro.</div>
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<b>IBS</b>- Irritable Bowel Syndrome. There are three types, C, D, and A, which is short for Constipation, Diarrhea, and Alternating, respectively. </div>
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<b>Tachycardia</b>- Overly rapid pulse. An average adults resting pulse is about 60-70 bpm (beats per minute). </div>
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<b>AI</b>- Stands for AutoImmune, a classification of health issue where the immune system attacks the body instead of just foreign invaders like germs. Diseases such as Rheumatoid Arthritis, Psoriasis, Lupus, and more fall into this category. </div>
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<b>RA</b>- Rheumatoid Arthritis. A form of autoimmune arthritis that causes joint destruction that can be rapid and severe. </div>
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<b>OA</b>- Osteoarthritis. This is the standard form of arthritis that comes with aging. It is caused by wear and tear on your joints from overuse wearing down the cartilage, or padding, in the joint. It is commonly treated with oral anti inflammatories, most commonly NSAIDs (non-steroidal anti inflammatory drug) like Celebrex, Naproxen, and Meloxicam. </div>
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<b>FD</b>- Fibrous Dysplasia. A rare genetic skeletal disease that occurs in about 1 in 30,000 people. A genetic flaw in (a) bone(s) causes the good, hard bone tissue to break down and leave behind a honeycomb like structure. This can cause the affected bone(s) to bulge and/or break, which can result in severe disability depending on location and severity. There are two forms, Monostotic (MFD) which occurs in 1 bone, and Polyostotic (PFD) which occurs in multiple bones. FD most commonly affects the "long bones", which includes the large bones in your arms and legs, ribs, and the skull and facial bones. </div>
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<b>SCS</b>- Spinal Cord Stimulator. This is an electrical device that is implanted into the spinal cord through an (usually) outpatient surgery. A small battery pack is implanted in the back, side, or stomach, in a fat pocket close to the skin, and wires are fed into the spine. An electrical pulse is fed through the wires to help control pain caused by CRPS, Failed Back Surgery Syndrome, other back issues, diabetic neuropathy, and more. Patients use a remote control to control the intensity of the stimulation. </div>
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<b>SNB</b>- Sympathetic Nerve Block. A type of injection done on the nerves where they branch off from the spine in what's called a Ganglion Bundle. These Ganglion Bundles branch off on the spine between the spine and the internal organs. These injections involve using a long, flexible needle to reach the ganglion bundle, then a mixture of medications including a numbing agent and an anti-inflammatory are injected to reduce inflammation. This can help reduce symptoms for patients with CRPS.</div>
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<b>SGB</b>- Stellate Ganglion Block. These are basically a SNB but done in the neck region in order to get to the nerves that control the arms and hands. These can be done from both the back and the front and use a much smaller needle than SNBs, as the nerves are closer to the surface. </div>
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<b>PT</b>- Physical Therapy. .. Need I actually define this one? </div>
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<b>WWPT</b>- Warm Water PT. Done in a heated pool, usually heated to 86 degrees F or warmer. My local therapy center heats to 89, which is comfortable even with the CRPS. </div>
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<b>OT</b>- Occupational Therapy. A type of therapy used to help people overcome and work within limitations caused by a disability or severe injury. While PT works on gross motor skills, OT works on more fine motor skills and tasks of daily living. </div>
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<b>Forearm Crutches</b>- Also known as Lofstrand Crutches, these are the most commonly use variety of crutch in the UK and Europe. In the US and Canada, underarm crutches are more commonly used, especially in cases of short term injury, as they are considered to be more stable. Forearm crutches are easier to negotiate and are less likely to cause nerve damage in the upper body, however, which makes them popular with those with permanent disabilities. </div>
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<b>Immune Suppressant</b>- these medications suppress various functions of the immune system in order reduce inflammation and damage to joints and organs in those with autoimmune diseases. Many of these drugs were originally created for use in chemotherapy.</div>
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<b>Biologics</b>- A class of immune suppression made using recombinant DNA. There are a variety of different mechanisms these drugs use, which means different patients respond to different ones. Because these meds are more fragile than most, they are given via injection or IV infusion. They are more expensive and there will not generics of these meds anytime soon (great explanation as to why <a href="http://en.wikipedia.org/wiki/Biologic_medical_product" target="_blank">here</a>), but they provide excellent options for patients who do not respond to chemo-type immune suppressants. Remicade, which I receive infusions of every 6 weeks, falls into this class of med. </div>
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Sooo... at this point, I'm sure I've left out something. Actually, more like multiple somethings. But this covers all of the tags I'm currently using and then some. But, if there's ever a term I use that you don't recognize, feel free to ask. I don't assume people know what all these crazy terms mean- quite the opposite, in fact. </div>
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Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-68883628407024595502014-04-29T01:52:00.001-04:002014-04-29T02:15:03.466-04:003 Months Post-Op<span style="font-family: Arial, Helvetica, sans-serif;">It's been a bit over 3 months since I had the Spinal Cord Stimulator put in, and I figured I was past due for an update on how things are going with it.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">First off, I am in love with it. I did a LOT of quibbling with myself over whether or not to go ahead with the surgery, as my dear friends at the Chronic Bitches can attest (I'm lucky they didn't disown me during all the quibbling and panic attacks), and I couldn't be happier with my final decision.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I do still have worries at times. The biggest of said worries is that I now have occasional back pain right where the SCS is attached to my spine, and it's clearly a bone sort of pain. I have had mild Degenerative Disc Disease for years now (which is when the spine shows more wear and age than would correspond to your biological age), but it's never caused hardly any pain, especially compared to everything else. But since the surgery, the random back pain will just... happen. Usually out of the clear blue. And it's a very precise location. I have theories as to why, including that my body has a warped sense of what bones should feel like thanks to all the hip shit I've been through, but when you get down to it, it's very transient (it usually disappears within a few hours and the longest it's lasted was less than 8 hours) and it's a hundred times easier to deal with the CRPS pain is. I imagine if I already had back pain issues, I probably wouldn't even notice it.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As for everything else, it's going well. At the 12 week mark, I was allowed to remove my back brace, though I stayed on restricted movement until I saw the surgeon again at 14 weeks post-op. At the 14 week visit, he did a quick exam then set me loose. I now only need to see the surgeon every 6 months to make sure everything's still sitting correctly and working well. The only lingering restrictions above and beyond the ones already there from the CRPS and hip issues is limitations on my bending. I can bend and twist most ways, but "extreme bending and twisting, and twisting while bending" are prohibited. In other words, no real change to daily life, just don't take up modern dance or yoga, lol. Easy enough to deal with, I think. I am, however, clear to try tai chi if I improve enough to manage the weight shifts on my bad hip! I'd love to give tai chi a whirl one of these days. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">My pain is still under better control than it was previously. We've briefly added back in the <a href="http://selfmedicatingwithyarn.blogspot.com/2013/11/crps-treatment-part-ii.html" target="_blank">Sympathetic Nerve Blocks</a> again, primarily for the boost to blood flow to my legs that they provide, but will be stopping them again briefly (it's a long story). Having the SNBs, the SCS, medications, and increased movement again is definitely a great combo for me. My legs feel better than they have in 3 years, and I'm excited to see where adding in physical therapy will take me. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I got to help pay back all those people who helped educate me along this journey, too, about 2 weeks ago. I got a call at noon- the patient who was going to come assist with a Question & Answer session hosted by my doctors office (they do these about once every other month or so, and a patient who has a SCS, one of the doctors, and the Boston Scientific reps give a presentation then answer questions from prospective patients) got sick and had to back out. I had attended one of these before my surgery and found it very helpful, so when the guys from BS asked me to come help out, I was thrilled to. I even got a bit of a bonus out of it myself- the guys from BS showed me some nifty tricks with my remote, including how to change the button volume and the screen brightness! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Overall, the SCS was the right decision for me. I firmly recommend that if your doctors feel it's the right step for you, give the trial a go. That's the best part of a SCS- you don't need to have major surgery without knowing if it's the right thing for you. The trial will show you that. Just because you do a trial doesn't mean you have to have the surgery. Plenty of patients either don't get sufficient relief or dislike the sensation and stop after the trial, never moving on. That's perfectly fine and insurance companies expect it to happen sometimes. I do recommend checking your surgeons success rate before going with any one doctor. I have learned that success rates can vary as much as 40% from one doctor to another, and that's mostly due to the method used to insert the wires and how good the doctor is at finding peoples "Sweet Spot", ie the best place to put the wires to get optimal pain relief. If you're unsure on the success rates of the local surgeons who did the implants, try contacting a sales rep for a manufacturer. My reps from BS know all the local surgeons who do the final surgery as well as knowing the doctors who do the trials, and they know who's worth seeing and who isn't the best. They a treasure trove of information. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">As always, if you have ANY questions for me, feel free to ask! Just check back for a reply to your comment if you leave one. Blogger doesn't give notifications that your comment has been replied to. :) </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0North America39.36827914916006 -84.023437513.846244649160059 -125.3320315 64.890313649160063 -42.7148435tag:blogger.com,1999:blog-5668203864565849852.post-2257625165015467562014-03-30T03:21:00.000-04:002014-03-31T01:18:48.886-04:00CRPS treatment part II<div>
<span style="font-family: Arial, Helvetica, sans-serif;">This post has been a long time in coming- part I was done months ago, but I confess to starting this section, and then managing to forget all about it. However, now that I'm 3 months post-op from my SCS surgery, my doctors and I have decided to resume the SNBs to treat one or two symptoms the SCS doesn't yet cover (mostly just blood flow issues- I have much better blood flow to my legs when I get the injections than when I don't). And so I decided to celebrate my return to Sympathetic Nerve Blocks by finishing the epic post on them. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">3) Sympathetic Nerve Blocks</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">These are a type of injection that goes in from the back, directly next to the spine, into the sympathetic ganglion nerve bundles that branch off the spine between the spine and the internal organs. These injections should always be done under fluoroscopy, a type of x-ray, for safety considering the proximity to organs and the spinal cord. The mix of meds injected includes a local anesthetic to numb the nerves to ease the pain from the injection and anti inflammatories to reduce inflammation in the nerves of the sympathetic nervous system. By slowly reducing inflammation in the nerves, the pain and other symptoms of CRPS can be reduced.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Like all treatments for CRPS, the results tend to be mixed. Some patients find them nearly miraculous, and having 3 or more succesful injections within 1 year of onset of the disease has actually be found to prompt remission in a few lucky patients. Most patients recieve partial relief and find them a valuable tool. And some people recieve no relief from them, just as with all types of treatment for any disease.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The sooner into the course of the disease the injections are started, the more effective they are, in general. However, that's not a hard and fast rule of thumb- I began recieving nerve blocks more than 6 years after the onset and I get decent relief from the shots (I personally find them most effective on the burning type pain, the swelling and discoloration, and the allydonia). I'm a firm believer that if there are no contraindications, such as allergies, that they are worth a try, especially in patients who are within 1 year of onset. I'm not going to lie, though- the first shot isn't always going to work. It can take up to 3 tries to find the right vertebrea to target, as not everyones anatomy is identical. If, after 3 shots, there is still zero relief, then most doctors recommend discontinuing the shots. The first shot usually gives about 1 hour to 1 day of relief, and that's fine- the effect of the injections is cumulative and after a few rounds, I get 4 weeks from them. Between 4 weeks and a few months is the norm for duration of relief once you've recieved several injections. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Since the doctor who does my SNBs is an amazingly awesome guy, and a massive believer in SNBs, he actually took pictures of me during the injection process for me to share with people. (Doc is such a big believer for a reason- he started his career as a pediatrician, and actually was my doctor when I was a little girl. He developed CRPS type I after breaking his ankle years ago. Due to his connections in the medical field, he had a diagnosis and his first injection within 1 month of onset. He got lucky, and went into remission and changed specialties right after, to help others recieve proper pain care. I love this guy for so many reasons!)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 1- An IV. Most patients prefer to recieve a small bolus of pain meds to relax them and help dull the pain of the shot. I'm a crazo, though, and my IV contains only saline, to help offset the fact that my already low blood pressure loves to drop right after the injection. Works like a charm for me, and I find the pain of the injection to be very transient. If you choose to recieve pain meds in your IV, you will need a driver to take you home and your appointment will take about twice as long. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 2- Get comfy on the table under the floroscope machine.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4KttlphZ_PhUmvtkfFHfqlDzU4sPQyB_fDV42W28VQHFXsFYOz6rhPNQehjmqpvUaLoaoXnAy6KcG-Z9DFJGdY-2IbZIQiuWpx-_PA0wTZDOcR4BaRluEFjQVXnRZ20AWfuNo-yYjUqKz/s640/blogger-image--277518562.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4KttlphZ_PhUmvtkfFHfqlDzU4sPQyB_fDV42W28VQHFXsFYOz6rhPNQehjmqpvUaLoaoXnAy6KcG-Z9DFJGdY-2IbZIQiuWpx-_PA0wTZDOcR4BaRluEFjQVXnRZ20AWfuNo-yYjUqKz/s640/blogger-image--277518562.jpg" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 3- The assistant will prep your back using the same type of scrub as before a surgery. My doctor likes to mark the right spot for the injection first, by using a small piece of metal and quick X-ray via the floroscope to make sure he's got the same spot as prior injections, then he'll put a small dot with a permanent marker on the spot, then they prep the skin. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 4 (optional)- Numbing the skin with lidocaine. This is totally optional and only some doctors even offer it. I'd skip it even if it was offered- frankly, the lidocaine will only reach 1/3 to 1/4 as deep as the actual nerve block needle goes, so all this does is numb the skin to the tugging of the needle. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 5- Inserting the nerve block needle. As I've mentioned, these needles are long, but they are thin and flexible. While inserting, the doc will assess several times with the floroscope, to make sure he's in just the right spot. The needle will actually go in to the side of the vertebrea, then hit the side of the bone and use it's curved shape to curve under the spine, allowing it to access nerves trapped between the spine and major organs.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 6- Checking final placement. When the doc thinks the needle is in just the right spot, they will remove the metal, inner portion of the nerve block needle, leaving a thin plastic catheter behind. They then inject a teeny bit of dye and use the floroscope machine again to confirm the needles placement. If the dye is in just the right spot, the doc will then inject a teeny portion of the nerve block cocktail and wait a few minutes. This is to make sure the needle isn't too close to any major blood vessels. If it's too close, then the medication can get sucked into the blood supply and cause ringing in the ears and a metallic taste. If all is good, after a couple minutes of waiting to be sure, then the doc moves on. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipMfkmR3qt1IiWNEA0YdmqWKaINJtXXiQvR8cm9-t1IyJsU364IaF0MzBsGXAAl4x8qfzQUEwDPYT8kBbPeMi1b4pv0GLCadXrp0-GZrUmmavB-oB6b_O7nHeYoTBH3aSk5inUoWM8uxJ-/s640/blogger-image--469379029.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipMfkmR3qt1IiWNEA0YdmqWKaINJtXXiQvR8cm9-t1IyJsU364IaF0MzBsGXAAl4x8qfzQUEwDPYT8kBbPeMi1b4pv0GLCadXrp0-GZrUmmavB-oB6b_O7nHeYoTBH3aSk5inUoWM8uxJ-/s640/blogger-image--469379029.jpg" /></span></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipOkTnFik6rQ5tQSwfVYovWtmZr5ujeRLV0d2YpW5KVNJUdiobNXVnRnUoKjNanIit0zniPzLkFnDYWXrI5Abw0if8Ei4k3XxdI7WtsuIvQLbYf-S1sgh34FGY8gW5t_mlKYMQFp1zZxcM/s640/blogger-image-1526933127.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipOkTnFik6rQ5tQSwfVYovWtmZr5ujeRLV0d2YpW5KVNJUdiobNXVnRnUoKjNanIit0zniPzLkFnDYWXrI5Abw0if8Ei4k3XxdI7WtsuIvQLbYf-S1sgh34FGY8gW5t_mlKYMQFp1zZxcM/s640/blogger-image-1526933127.jpg" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Step 7- Inject the full cocktail. They like to keep you laying flat for a minute or two, to let things soak in, then all is said and done and the doc will remove the needle (which is quick and easy). </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4_CzZr9p4nuuApzpWe-sHDmojQK1XDJWIsixmOcloZP8bRNqMloCcroWPsdFReQA_nWbE2nVX6WeCXAwKrk_Wu6bx0I38kO5qxbhDZEhJXglAS-n28YMhq37zCEQLAknNhNncYrLlsN7i/s640/blogger-image--443223468.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4_CzZr9p4nuuApzpWe-sHDmojQK1XDJWIsixmOcloZP8bRNqMloCcroWPsdFReQA_nWbE2nVX6WeCXAwKrk_Wu6bx0I38kO5qxbhDZEhJXglAS-n28YMhq37zCEQLAknNhNncYrLlsN7i/s640/blogger-image--443223468.jpg" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Then you're done! </span></div>
Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-79591520627771277492014-03-09T04:08:00.001-04:002014-03-09T04:08:16.261-04:00Mall Revamp Brings Equality to Shopping<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif;">A local mall, the <a href="http://www.kenwoodtownecentre.com/" target="_blank">Kenwood Towne Centre</a>, recently decided it needed a bit of a refurbish. Considering the mall had last been updated when I was a very little kid, it was likely past due for such a high traffic place. I assumed that like most overhauls of public spaces, they'd take the easy way out and just fix the cosmetic issues. Instead, the mall went above and beyond, in a fabulous way. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This mall has a very peculiar set up. The second floor is twice the size of the first floor, and the half of it that has no first floor changes heights frequently as you go down the hallway. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2pTFwjupjEeI0FoM8F3atWzMUOAoaQ6s-vOixGh6keLJqsdMJ4yBrGJmMXIED15Bi5Gi7ClZURd1FwbzyTDoRiUjkzuBOWZXKf10cVmQV0MZqNv3FwgO_84TekaUoxRuJXwnhWKlcoEPD/s1600/KenwoodTowneCentre+map.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2pTFwjupjEeI0FoM8F3atWzMUOAoaQ6s-vOixGh6keLJqsdMJ4yBrGJmMXIED15Bi5Gi7ClZURd1FwbzyTDoRiUjkzuBOWZXKf10cVmQV0MZqNv3FwgO_84TekaUoxRuJXwnhWKlcoEPD/s1600/KenwoodTowneCentre+map.jpg" height="256" width="400" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Stores on the right hand side of the hallway could be as many as 6 steps higher or lower than those on the left. This meant, with the old setup, that there were frequent stair cases. In order to get to stores when using a wheelchair or pushing a stroller, you had to follow the "Stroller Path", which was S shaped. To get a store not on the Stroller Path, you'd have to go one of the far ends, then double back on yourself, up to 10 stores, using steep ramps, causing excessive fatigue for a simple trip to the mall. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">This shot of the old pathways shows the height difference. If you look carefully, you can see 2 separate stair cases down the center. This was what the entire hall looked like, with a total of 7 or 8 stair cases. (This picture is not mine- it was pulled from the background of an old youtube video, as I never imagined I'd need a Before picture when the construction began!)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5FHRze2S9P_ijAp517hvgvDjBdN13oURYw33hyYejqCs_0RgfvrLLbHctzT1ZBXn5OhapR0X3JRjzUuxVdn_35E9CP302-vikjlRvq6ORop4kJIqAfpp-nfjdPhEREEWoVaeTTOxa6Yz2/s1600/kenwood+construction+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5FHRze2S9P_ijAp517hvgvDjBdN13oURYw33hyYejqCs_0RgfvrLLbHctzT1ZBXn5OhapR0X3JRjzUuxVdn_35E9CP302-vikjlRvq6ORop4kJIqAfpp-nfjdPhEREEWoVaeTTOxa6Yz2/s1600/kenwood+construction+2.jpg" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As part of their overhaul? They added a ramp <em>every single spot they have stairs </em>in this wonky hallway. </span></div>
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<a href="http://www.ravelry.com/forum-images/daapatemysoul/wjek-inqm98" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img alt="image.jpg" border="0" src="http://www.ravelry.com/forum-images/daapatemysoul/wjek-inqm98" style="border: none; max-width: 450px;" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">These new ramps make the mall. It's fantastic! I can now get wherever I need to go with far less effort, and with no backtracking. I'm no longer constantly separated from my family or friends when I shop with them, allowing me to be more included. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">My hat is off to the folks managing the Kenwood Towne Centre. They did some pretty awesome things with this revamp, or should I say, reRamp. Now, if we could just get all public places to follow suit. </span></div>
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Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-74417302225572511022014-03-01T01:15:00.000-05:002014-03-01T01:15:47.421-05:00Zebras DO Exist! <span style="font-family: Arial, Helvetica, sans-serif;">Today's THE day. The day of each year where I become even more loud mouthed than usual. Rare Disease Awareness Day. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Not-so-Fun Facts, courtesy of <a href="http://globalgenes.org/rarefacts/" target="_blank">The Global Genes Project</a>:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- 1 in 10 Americans, on average, have a rare disease</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- 80% of all rare disease are caused by genetics</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- 95% of all rare diseases have not a single FDA approved medication</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- 50% of those affected by rare diseases are children</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- of those children, 30% do not live to see their 5th birthday</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- approximately 50% of all rare disease have NO disease specific group supporting patients or research</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It's a grim picture, all told, for those who suffer from a rare disease. Many don't even have a diagnosis, or suffer unnecessarily for years due to a lack of a diagnosis, due to current practices. I spent 6 years without a diagnosis for one of my rare diseases (RSD/CRPS) and 7 years without a diagnosis for the genetic skeletal disease I have (MFD). With proper diagnoses, I likely would have had fewer surgeries and a much easier journey. Yet, most doctors feel no need to ever look beyond the most obvious answers.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In fact, in medical school, they teach new doctors a phrase: "When you hear hoofbeats, think horses, not zebras." The gist is that when you see a set of symptoms, you should always assume the most common answer is the right one. The problem with the No Zebras mindset is that if you don't fit into a tidy box with perfect test results or a common diagnostic criteria list, you're not going to get help. Too many people suffer for years, even decades, because no one will look outside and see that one of those horses has stripes. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">When you find that one doctor willing to look past all the horses and see the lone zebra standing there, hold on tight. They might be your only hope for decades more to come. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-3504256610830901422014-02-24T16:47:00.000-05:002014-02-24T16:47:05.608-05:00And the Games are over... <span style="font-family: Arial, Helvetica, sans-serif;">The Olympic Games, that is.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The Olympics are always an exciting time for me, for several reasons. First off, I enjoy a lot of the Olympic sports and they aren't ones you normally see on TV, like arial, bobsled, skeleton, ice dancing, etc. I have a blast getting sucked into the emotions of the athletes.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">But the biggest reason the Olympics are one of my favorite biennial events? The Ravellenic Games.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">First off, for those of you not familiar with <a href="http://www.ravelry.com/" target="_blank">Ravelry</a>, it is one of the largest social media websites out there. And it's exclusively for fiber artists, including knitters, crocheters, spinners, and weavers. During the Olympics, a group of intrepid and <i>very</i> hardworking volunteers run the Ravellenic Games. The Ravellenic Games start when the Opening Ceremony of the Olympics starts and end when the torch goes out at the end of the Closing Ceremonies. The point of the Ravellenic Games is to challenge yourself as a fiber artist, just as the athletes are doing in their sports. We even have events, like the Shawl Short Track, the Lace Luge, and the Hat Halfpipe.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This year, the team I compete on, Team No Spoons (in reference to <a href="http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/" target="_blank">the Spoon Theory</a> by Christine Miserandino), elected me their Fearless Leader. Okay, so the real title is "Team Captain", but "Fearless Leader" is just more fun. Team No Spoons is team for the group* the Chronic Bitches. The Chronic Bitches, or CBs, as we call ourselves, are a support group for chronically ill/disabled fiber artists who are a touch irreverent, fond of naughty words, able to laugh at themselves, willing to talk about anything, and, most importantly, <i>incredibly</i> supportive. I can turn to my CBs about anything and everything, and have for 4.5 years now. They are my rock. We share knowledge, tips of dealing with difficult doctors, discuss the frustrations of being ignored by yet another doctor with a god-complex. It's been a privilege getting to return some of that awesome support by leading the team.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I'm a rather slow knitter, and crochet is out as my autoimmune arthritis has my hands, wrists, and elbows extra swollen lately, so I picked small. I opted to knit Petunia the Patio Monster from <a href="http://www.amazon.com/The-Big-Book-Knitted-Monsters/dp/1604680091/ref=sr_1_1?ie=UTF8&qid=1392708566&sr=8-1&keywords=the+big+book+of+knitted+monsters" target="_blank">the Big Book of Knitted Monsters</a> by Rebecca Danger. She made out of a self-striping rainbow yarn called Serenity Garden, sold by Jo-Anne's Fabrics. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Also during this years Games, I decided to do a bit of spinning on my trusty Lendrum DT spinning wheel. A friend bought me a batt (fiber prepared in a sheet) that is black alpaca overlaid in rainbow dyed silk. I decided to separate the silk from the black alpaca and spin the two separately, into different plies (the individual strands that are then together to make yarn). Then, once I ply the black and the rainbow plies together, and knit up the yarn, you'll get peeks through the black of a very vibrant rainbow. I'm happy with how it came out in the end- I have about 86 yds of a dk-to-worsted weight yarn from this. Though, I am quite glad to be done trying to spin silk in very dry air- it was Attack of the Static Monsters around here. The one night, my mom started laughing at me, and I looked down to find my ass being attacked by a glob of green silk- which had launched itself more than <i>3 feet</i> across the room to attack me. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The batt, as it came in the mail:</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb3QJEyBOFfKPWaMyyqGdYEnC_l6swi2ICBPev1CP3sPIUlfnEQu8qEtkJv108PdFhYy6VcbCiFHYl5ZcYPgXIk2tlaa519RVTZnD6AkowOOqXvndmyLqpP1kNKkNSEohdlbDY1l7RXSY8/s1600/rainbow+batt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb3QJEyBOFfKPWaMyyqGdYEnC_l6swi2ICBPev1CP3sPIUlfnEQu8qEtkJv108PdFhYy6VcbCiFHYl5ZcYPgXIk2tlaa519RVTZnD6AkowOOqXvndmyLqpP1kNKkNSEohdlbDY1l7RXSY8/s1600/rainbow+batt.jpg" height="295" width="320" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The batt, once I had separated the silk and the alpaca:</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis7x9lgAdIXfHxGIM6w3k_NQi4JnBgrAPalgj6TbWSlkpipu4UYSW05kzjqMfHPbPCqKN8eogzT8hjTt6x9X9O5MaBq6x7yETu-n8Osg3oB4RI4C3CW0g3e2g2oJhYUBqucBEvHhr7gfuy/s1600/rainbow+chaos.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis7x9lgAdIXfHxGIM6w3k_NQi4JnBgrAPalgj6TbWSlkpipu4UYSW05kzjqMfHPbPCqKN8eogzT8hjTt6x9X9O5MaBq6x7yETu-n8Osg3oB4RI4C3CW0g3e2g2oJhYUBqucBEvHhr7gfuy/s1600/rainbow+chaos.jpg" height="240" width="320" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">And finally, the final yarn:</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHPWYHZlcLi81UKQTJGgoJ0VgUSDCbSD5t7M25kGn8UcLNTwuQTDf0qcXZ_Hwj1yefAi98ccfyT5wUAtnlYi3dphd2VN36RC-omrraflPXkvr_3_A09W32-GPG36AZ43r2quxo6JnmQVtu/s1600/rainbow+yarn.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHPWYHZlcLi81UKQTJGgoJ0VgUSDCbSD5t7M25kGn8UcLNTwuQTDf0qcXZ_Hwj1yefAi98ccfyT5wUAtnlYi3dphd2VN36RC-omrraflPXkvr_3_A09W32-GPG36AZ43r2quxo6JnmQVtu/s1600/rainbow+yarn.jpg" height="163" width="320" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I'm very happy with how my projects came out, and I'm very proud of my team. They are truly some of the greatest women I've ever had the pleasure of knowing, and it was a pleasure working with them during the Games. Can you really ask for more? </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">* Groups are basically sub-forums within Ravelry- you have to go looking for the group you're interested in to read anything posted there. You can join groups to get them to show up on your main page when you log in, which is very useful. The groups represent a wide variety of interests, from the fiber arts related like lace knitting and Sock Knitters Anonymous to non-fiber arts topics, like politics, TV/movie/music fan groups, and even health/wellness groups.</span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com1tag:blogger.com,1999:blog-5668203864565849852.post-52980849041279630862014-02-13T01:56:00.001-05:002014-02-13T01:59:19.465-05:00Post-op... Again<span style="font-family: Arial, Helvetica, sans-serif;">This is me, after all, and random surgeries are as much a part of my life as anything else at this point. This one was #9 in a hair over 9 years, and it should have fallen in the bottom half as far as how complicated/serious/painful it would be. (Simple gallbladder removal as the pesky thing was filled completely with large stones.)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Once again, this is ME. I should have known a simple gallbladder removal wouldn't stay simple for long.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Surgery was Friday, at a local hospital. Of course, the surgeon I was seeing came highly recommended, but he doesn't operate out of the one local hospital I've had good luck with. Fine. Fingers crossed, things won't totally suck. I should have known I'd be wrong. Don't get me wrong- the surgeon, anesthesiologist, and nurse anesthetist (who is actually a family friend) all did great jobs. But the pre- and post- op groups? Were horrific at their jobs. Epically so.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The nurses refused to give me proper pain meds, despite them being ordered for me. No joke- they refused to give me the oxycodone the doctor ordered for me because I had already been given tylenol in my IV... even healthy patients aren't supposed to manage immediate post-op pain with 2 tylenol. At one point, I had to get up to pee, and before I even made it to the door of my room, I was bent in half, sobbing in pain. With my history of extreme pain, it takes a LOT to get to me. Plus, I now have the SCS implanted, and it allows me to get some pain coverage in my stomach, so I had it jacked as high up as I could get it to go. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It didn't help that my internal organs are more affected by the CRPS than we ever imagined. The air pressure from the laparoscopic procedure should not have caused such extreme pain for the length of time that it did, but it did, and the fact that the SCS helped cover that pain, along with the way it presented, taught us that my organs are more sensitive to pain than we knew. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Also, never, ever, ever trust a nurse at a post-op unit to understand the words, "I can't take the pain, somethings <i>wrong</i>." They blew me off and assumed I was making it all up. It finally got so bad my mom convinced them to release me, so that she could get me home and on to higher doses of pain meds. (Two low dose percocet shouldn't be a "much higher dose" than what a hospital gives you in post-op....) They were giving me 1/3 of what I should have been getting at the hospital. Once I got home and had access to heating pads and actual meds, I could breath again. Sad. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I did learn one thing from all of this: to only have surgery at a few, select hospitals. I don't care how fancy they are, they can still be a nightmare waiting to happen (I'm looking at you, Rochester Methodist...). Stick to what you know works. Any future local surgeries will held at a single hospital, the place that did my SCS. Because, well, this is me. There will be more surgeries, it's just a matter of what they turn out to be for. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-42756167871779260122014-01-31T02:59:00.003-05:002014-01-31T03:09:01.668-05:00Temporary Pets and Shiny Objects<span style="font-family: Arial, Helvetica, sans-serif;">Obviously, I haven't been around much since the SCS stuff all got into full swing. At first it was basic exhaustion, then, well, honestly? I got out of the habit of posting. Anyways, I figured I'd share some of the crazy fun I've been having while hiding from The Cold. (Seriously, we spent multiple days this month colder than the friendly state of Alaska.... I live below the Mason-Dixon line. That sort of cold ought to be illegal.)</span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">First off, a friend wound up living here for a few weeks, along with her hysterical cat, Annabelle. Belle appears to have forgotten How to Cat somewhere along the way. Why, we don't know- she grew up with a litter then was adopted with her sister, so the silly dog behaviors are just fun. She plays fetch. She also loves to sit on peoples heads and watch TV. Like I said, silly cat. A standard day in the life with Ms Annabelle around went a bit like this:</span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">"This is my toy. No, I will not share right now, but I will stare you down."</span><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwKuKZtrI1Rp5NzwJgeEurZJcAHmm2430REX4HxR-7Rg5qGO6Z0ka7iOcEr_5d0B-50ll8t_GlxLc0iMVV1cCccllLgLgpD0R856FPYLLGltnnhvTBw9I0ZcolW48cE43fA-iSyMM6ZJ0I/s640/blogger-image--1914671564.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwKuKZtrI1Rp5NzwJgeEurZJcAHmm2430REX4HxR-7Rg5qGO6Z0ka7iOcEr_5d0B-50ll8t_GlxLc0iMVV1cCccllLgLgpD0R856FPYLLGltnnhvTBw9I0ZcolW48cE43fA-iSyMM6ZJ0I/s640/blogger-image--1914671564.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">"I have brought you my kill. Now I must stare at it to make sure it's dead."</span></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAUkmmcJkLnh60JbOcBCv0vBXD3OSQMTlWeuWBkect9kawXhcQsiEyUvyTjQIB0Ti840VlIVP4Rs8KdXkZDWF003LmmwoogSqDcbtkxBKlSr2zTir2_rkEFfDEI3Tbi4ptQ8iSdfbURk20/s640/blogger-image--636299451.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAUkmmcJkLnh60JbOcBCv0vBXD3OSQMTlWeuWBkect9kawXhcQsiEyUvyTjQIB0Ti840VlIVP4Rs8KdXkZDWF003LmmwoogSqDcbtkxBKlSr2zTir2_rkEFfDEI3Tbi4ptQ8iSdfbURk20/s640/blogger-image--636299451.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">"It's been 2 seconds- why haven't you thrown the octopus yet?!"</span></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU6hwkVefOKJC0LiB6HJGBOa_zn2FpKcqxEnE2byB6Wb5rSqRi1p3tLjBE8PIUpO00Zxn731rIVhm64L3hokL3sJ1tp75AiCQieXtmZcqWEvdiaJhQpuPwyGR0u5FcHbcAnzcFwgHS4rsF/s640/blogger-image-1629334931.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU6hwkVefOKJC0LiB6HJGBOa_zn2FpKcqxEnE2byB6Wb5rSqRi1p3tLjBE8PIUpO00Zxn731rIVhm64L3hokL3sJ1tp75AiCQieXtmZcqWEvdiaJhQpuPwyGR0u5FcHbcAnzcFwgHS4rsF/s640/blogger-image-1629334931.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">In between being owned temporarily by a cat, I made an awesome discovery- I can spin again!! On my wheel!!!!!! Yes, that requires that many exclamation marks. My fabulous Lendrum DT spinning wheel has been languishing for the last 2 years, since my RSD/CRPS flared completely out of control. The foot and leg motions needed to use it were horribly painful. In the 2 years before the SCS surgery, I managed to turn a mere 1oz of fiber into yarn. That's about 20 yards, for what it's worth. You can't even knit half a fingerless glove with that amount. Since the SCS was implanted? I can crank it up, drown out the pain, and treadle for hours. In <i>3 days </i>I managed to spin 4oz of alpaca roving and 1oz of a baby camel/mulberry silk blend. (And yes, fiber counts as "shiny", as shiny applies to all things good and awesome.)</span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">The alpaca:</span></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS1HsJdDhaOfpiyA3hUuoPCEfkpG5AzLpxuli_IDdiTM3ZbHrZwcAEez5lJj-nX7LDBOl0k0o3s6hOua_A50O7iaaNIy0uxeTXLeHSDY1d5RSb2b-9U5UcZY4L_W6mI9v7iF3wyDh1mNpW/s640/blogger-image-1637491421.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS1HsJdDhaOfpiyA3hUuoPCEfkpG5AzLpxuli_IDdiTM3ZbHrZwcAEez5lJj-nX7LDBOl0k0o3s6hOua_A50O7iaaNIy0uxeTXLeHSDY1d5RSb2b-9U5UcZY4L_W6mI9v7iF3wyDh1mNpW/s640/blogger-image-1637491421.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">Part of the camel/silk (I'm now up to 1.5 spun of this):</span></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3sYwihpbh6v_L9N2cbThWjFwoJWSGfOkPriUCqv8sRZT0qUp7Q4Y83ff1EIapzFllNNeG8-DJ4B7pndP-rixFSPyYpgMKdwiE9EmBYt8roB58gxFx-14rWUPHfgD2MXtYNgWM852lNT5U/s640/blogger-image--1193439320.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3sYwihpbh6v_L9N2cbThWjFwoJWSGfOkPriUCqv8sRZT0qUp7Q4Y83ff1EIapzFllNNeG8-DJ4B7pndP-rixFSPyYpgMKdwiE9EmBYt8roB58gxFx-14rWUPHfgD2MXtYNgWM852lNT5U/s640/blogger-image--1193439320.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">Ms Annabelle disapproved of the spinning, and instead felt I should stop moving my legs so she could rest there while I adored her.</span></div><div><font face="Arial, Helvetica, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQA0G2jlJPTDjMo8gEpdqt9-EphU6r8peZ0DJwHQSVn5tQvHbQKfR0jeZ9Vm6quetcXDCRJyj4AjAG4DxMbQZcEYbKo9ooE_8EEkfrF-bK5BHw4uwM2DNmksaWc-vE29krIN6KRGlK_xaL/s640/blogger-image--1596820028.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQA0G2jlJPTDjMo8gEpdqt9-EphU6r8peZ0DJwHQSVn5tQvHbQKfR0jeZ9Vm6quetcXDCRJyj4AjAG4DxMbQZcEYbKo9ooE_8EEkfrF-bK5BHw4uwM2DNmksaWc-vE29krIN6KRGlK_xaL/s640/blogger-image--1596820028.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif;">This is so much FUN. I'd almost forgotten how easy it is to loose yourself in a bag of fiber for hours on end. I feel like this surgery has given me a part of myself back. Still no way of knowing how much mobility I'll really regain, but if I get back just this one thing? The entire surgery was worth it. </span></div>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com3tag:blogger.com,1999:blog-5668203864565849852.post-45789452299633515022014-01-02T00:09:00.003-05:002014-01-25T15:19:42.106-05:00I'm officially a robot! Part II<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">... and, continuing onward...</span><br>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Of course, becoming a robot means I need a way to program myself. So I now have a handy dandy remote. The remote about the size of one of those old rectangular brick cell phones, the ones that were all the rage before flip phones hit the market big time. I have 3 programs on mine, Smooth, Thumpy, and Massage. My trial unit had a 4th option, but I never used it, so it's not on my permanent unit. The remote does show the battery life on both the remote batteries and the stimulator batteries, which is completely awesome.</span><br>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">I've had 1 check up, about 3 days post-op. Basically, they wanted to make sure the stimulation still felt good (it does!), that my incisions looked good (they did), to remove the bandages, and check my programming. I've been feeling the paresthesia in my stomach a good bit, and it can, and occasionally does, make me nauseous, so the Boston Scientific rep came in and tweaked my programming some. He backed down the intensity in some ares and upped it in others. I still get the occasional upset stomach, but I can now get meds in me and turn off my stim for a few minutes to combat it. Before I was heading straight to vomiting. At the check up, I also got to see the fluoroscope images from my surgery after the wires were put in. I love that on the right hand side of the image, you can make out the circular sections of the discs. On the left is the boney protrusions off the back of the spine. And right between the two sections, you can see my nifty new, permanent, wires.</span><div><font face="Arial, Helvetica, sans-serif" size="1"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz3A7HdXg8FlO0j766hnZ4yik7F29xxN_7K7X5I0cA6x5Bfw6u2mNRXUWlzdrxi2ksx6FpYw3tKJ7N_oZJl-sU969X-hKgpVpgKPpFXPdDke5PyPMU5z4x1afQtz9UfFfUV2cHhGasxvqO/s640/blogger-image--1949611980.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz3A7HdXg8FlO0j766hnZ4yik7F29xxN_7K7X5I0cA6x5Bfw6u2mNRXUWlzdrxi2ksx6FpYw3tKJ7N_oZJl-sU969X-hKgpVpgKPpFXPdDke5PyPMU5z4x1afQtz9UfFfUV2cHhGasxvqO/s640/blogger-image--1949611980.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">The incisions don't look half bad, either, under all the Steri-Strips. (Steri-Strips are a product used here in the US to cover large wounds, especially surgical wounds, after things like stitches or staples are no longer needed. They give your skin a bit of a boost, but less than things like staples/stitches, and fall off on their own in 3-10 days.</span></div><div><font face="Arial, Helvetica, sans-serif" size="1"><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Weirdest part of it all, though? Not only can you see/feel the outline of the brains of the unit, you can see the wires under my skin as faint grey lines. If you look carefully, they form a large U shape under my incision. VERY odd to look at. It was more obvious the first few days due to swelling.</span></div><div><font face="Arial, Helvetica, sans-serif" size="1"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjgSgReNyAsANcTEVVngY3PDrZROze4K-qSss9ZhgpLh2BEDsFrY3BY4Kur2ojeBe_IeL0qtkjbF6-XrvbmIvhahxLQTL7Hr975yeytjcZZqM3JpGJbdh2SA8o0plUPsn-mqLMcbQMlPPJ/s640/blogger-image--1930205672.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjgSgReNyAsANcTEVVngY3PDrZROze4K-qSss9ZhgpLh2BEDsFrY3BY4Kur2ojeBe_IeL0qtkjbF6-XrvbmIvhahxLQTL7Hr975yeytjcZZqM3JpGJbdh2SA8o0plUPsn-mqLMcbQMlPPJ/s640/blogger-image--1930205672.jpg"></a></div><br></font>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">All in all, so far, I'm happy with the choice I made. My pain in my legs is between a 4 and 5 most of the day, instead of the 6 to 8 range. I didn't get down to 4 hardly ever before Robot Day, so I'm hopeful. Now, to heal enough that I can try physical therapy and walking! My post-op pain is diminishing rapidly, my abilities are already on the upswing (I can bend my knees further when standing and bear more weight when walking), and I'm excited to see where things go from here.</span></div>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-78371200111171576402014-01-01T23:58:00.000-05:002014-01-02T01:39:26.407-05:00I am now officially a Robot! Part I<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Or Cyborg, take your pick. My uncle keeps insisting cyborg is more accurate, so of course, I'm sticking to using Robot just to annoy him. This is the only logical pathway when family is involved.</span><br>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Surgery was about a week ago, on Dec 27th. The hospital was <i>amazing</i>. They dealt with my panic attacks extremely well. They made sure I was kept in the loop before hand, that I got to speak with everyone as I requested, they even offered to give me my versed (anesthesia that causes memory loss afterwards) dose about an hour before surgery to knock me out. I wound up choosing to wait a little bit to get my versed so I'd be sober when speaking with the doctor. The surgeon gave me some input on where to locate the brains of the unit, I chose my back above the waist. The butt cheek is a much more common location, but I didn't want to be sitting on the unit in case it winds up being sensitive. Sensitivity at the implantation site is not uncommon, especially for the first few months. They also usually locate the units on the right hand side, but I chose the left to keep it away from the hardware in my femur. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">The rep from Boston Scientific was there the day of surgery and came to visit me beforehand. He assured me my new unit was fully charged, then took it out of the box and showed my exact unit to me less than 40 minutes before it entered my body. It was, of course, still hermetically sealed, but still neat to see through all the layers of plastic. </span><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><br></span>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">I'm told I make blue hair nets look fashionable. Also that I'm remarkably calm pre-op, despite the whole panic attack thing going on. (My vital signs gave me away, but I am proud to say I kept the hysteria to a minimum.)</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><br></span>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Post-op, the awesome people at J Hospital hooked me up with paper tape bandages. They were awesome! I tend to itch like a crazy person under plastic bandages like Tegaderms, so I really appreciated them finding me an alternative. </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">I wrote this whole post, then realized it had become extremely long. So I'm posting half tonight, and half tomorrow. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com1tag:blogger.com,1999:blog-5668203864565849852.post-41068617009687951832013-12-18T21:44:00.000-05:002013-12-18T21:44:59.219-05:00My apologies for the vanishing actI just wanted to take a moment to apologize for vanishing recently. Life has been... complicated, to say the least.<br />
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I should probably explain that my last surgery was an experience straight out of nightmares. The first day I was post-op, my assigned Hospitalist (a doctor who manages your care while you're inpatient) got his hands on my chart and promptly yanked me off more than half of my meds. This included an extended release pain medication that acts in the brain as both a sudo-narcotic (a non-narcotic that can trigger the same withdrawal symptoms as the real deal when stopped abruptly) and a SSRI (class of antidepressant). They also withheld my SNRI (a type of antidepressant used to control long term chronic pain), and nearly all of my GI medications. So I spent 5 days in hell. I was freezing cold one second then extremely overheated the next. I would sweat through my sheets in minutes after they changed them. I've never been so anxious in my life. My heart rate was through the roof and if I so much as breathed deeply, my heart rate monitor would sound an alarm. I actually spent 3 days screaming, "There's bees in my wrist!! Oh, my god, there's bees in my wrist!!" And the doctors? Did nothing but stand there and watch. Only on the 5th day did anyone bother to do anything, and even then they didn't bother to give me my proper meds. Instead, a nurse talked a doctor into giving me a dose of Ativan, which finally allowed me to calm down enough to explain to the friend there caring for me what was wrong. She promptly went and got my meds from the hotel and gave my meds from home, and in hours, I was on my way towards normal. It was only until after I'd been out of the hospital for a full 24 hours before I could manage to hold down any food or drink. In the week I was inpatient? I held down a single sip of Sprite.<br />
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So obviously, the word "Surgery" is not a pleasant one for me. We don't know if I have full blown PTSD at this point or just severe situational anxiety, but the idea of an inpatient stay or surgery terrifies me. This isn't a good idea for someone with health issues that require frequent surgery. This SCS implant will be my 8th surgery in 9 years.<br />
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Despite the rising anxiety about the SCS surgery, I decided I couldn't let other things slip, and I made an appointment with my GI doc about a month ago. I had been having occasional intestinal pain after eating and combined with a few other symptoms, the possibilities included Crohns Disease and the RSD/CRPS spreading to my intestines. After a round of testing, the results were in. The newest addition to my list of GI issues? Severe Gallstones. Apparently, my gallbladder is "completely filled with extremely large stones". The quote is from the radiology report. After they got done being floored I'm not in more pain (seriously? I have CRPS- pain is as common as breathing), they told me I need surgery #9, to remove my gallbladder. Two days ago I had a gallbladder attack, where one of the stones shifted and caused major pain, which necessitated a trip to the ER for an injection of pain meds and nausea meds. Thankfully, the meds relaxed my body enough to allow the stone to shift again and the pain is back to it's normal level.<br />
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Between the gallbladder going bad, I've had one major dental issue after another. My autoimmune issues cause my teeth to rot, and I usually end up with 10-14 fillings per year. In the last 2 months, I've had a tooth chip while eating toast of all things, which resulted in a crown. I've had my normal cleaning and 5 fillings. A filling chipped off, which meant an extra appointment to fix it. Then I ended up with an abscessed tooth out of nowhere- I had no real risk factors for an infection like that. The abscess meant a full root canal. Then the infection came back. Add in removing more material and a second round of mega antibiotics. I go back tomorrow and if I'm lucky, we'll just pack the tooth with permanent filling and I'll be done. If I'm unlucky, I'll end up needing surgery #10, to surgically remove the nerves at the tip of the roots, since sometimes the infection lingers up there. I have no way of knowing which way this appointment will go, since I'm still having jaw pain and sensitivity.<br />
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I have to say, the thought of facing 2-3 surgeries in as many months is terrifying. I've spent more than one night lately curled up in a ball trying desperately to remember to just <i>breath</i>. It's not easy to remember. This would be easier if I were dealing with surgeons I knew, but the unknown? Terrifying. Simply terrifying.<br />
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So I apologize for the quiet, though I will try my best to keep everyone up to date on the SCS process and various surgeries. Depending on how I feel, the post the day after the SCS might be made by a friend. I promise she's as crazy as I am. ;)Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-62822033915416623042013-12-18T18:43:00.000-05:002013-12-18T18:43:01.503-05:00SCS pre-op appointmentToday was my first appointment with my neurosurgeon, Dr A. He actually is a pain management doc and works full time with my current traditional pain management doctor (the one who manages my meds, who I honestly extremely dislike), Dr M. Yes, I have 2 pain management doctors already, Dr. M, who does traditional pain management, ie, my medications, and Dr R, who does interventional pain management, ie, my injections. And now Dr A, who will do my SCS implant surgery.<br />
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It was a crazy long appointment, about 2 hours, which shocked me as I've already passed so many hurdles for the SCS and I'm already seeing a doctor in the same practice. I did manage to dodge the "pee in a cup" routine to test for illegal drugs. Those tests are extremely expensive (I currently pay $300+ out of pocket for each one and I have several done per year) and since I just had one 2 months or so ago by Dr M, who is in the same practice, I <i>really</i> didn't want to pay for another one. Since it was the same test, same company, same practice, they accepted the last results. My pocketbook danced the cha-cha.<br />
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After the normal check in routine and pages of forms to fill out about meds, treatment modalities tried, pain intensity, etc, I had an hour long exam by the Physicians Assistant. She pointed out how weak my right leg is (knew that already), how discolored my legs are (knew that already), how wonky the hair on my legs is (knew that already), and the huge number of large, gnarly looking surgical scars (gee, how did those get there?). Then Dr A came in and talked over the entire thing with me. Pretty straightforward. Most of my questions had to do with meds and the day of- mostly, can I take my meds that morning? (Yes, I can, so long as I don't eat anything.) And <i>please</i> do not remove my Butrans (buprenorphine) patch. (They promised that so long as I warn them to not put any warming blankets over it, they won't.) I don't want my patch removed because they don't replace it afterwards, so you're left to spend up to your first week post-op in withdrawal. Been there, done that, it sucks more than I can ever begin to explain.<br />
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The only thing that was different than I expected was that the doctor will out of the country for the first week after my surgery. He had been trying to avoid doing surgery that week, but we had requested it, so it truly doesn't bother me that he'll be gone. He's already planned to have a colleague cover for him, so everything should be good. I do appreciate the warning, though, just so I know everything going in. All in all, Dr A seemed like a decent guy from the very short time I spent with him, and now the next step is actual surgery on Dec 27, at 1pm EST.Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-26696694246124880392013-12-15T01:31:00.000-05:002013-12-15T01:31:06.204-05:00SCS trial, days 3-6It's official- I failed to manage to post every day like I'd planned on doing. I have good reasons, I promise. While you have the trial in, the doctors want you to push the limits a bit. There are rules about how can you can move, so as to not move the wires too far from where they need to be in the spine. But within those limits, they need you to see if you can do more than normal. So I spent the last 4 days of my trial getting out of the house and walking more. This meant I was extremely exhausted, from not only the extra activity, but also from the process of my brain adjusting the sensation of the paresthesia.<br />
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<b>The end of the trial:</b><br />
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My trial unit was malfunctioning. It worked, but every time I turned on the remote, the intensity went up. It was very, very random. A couple minutes after the remote locked again, the intensity dropped again. The sales rep said that the big thing was I was getting pain relief. And I did!<br />
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It was fantastic. I actually got pain relief. The buzzing is weird, but you get used to it shockingly fast. The buzz is exactly like everyone described it- it felt like a cell phone on vibrate, just from my belly button on down.When I cranked it up, it feels a bit like my leg is about to fall asleep, but hasn't yet done so. It's completely painless. Even when I moved suddenly and get a big jolt, it didn't hurt, it was just startling. Plus, once I get a permanent unit, I shouldn't get those odd jolts. With a permanent unit, scar tissue forms inside the spinal cord around the electrodes and holds them in place. The wires are also connected to the actual vertebrae through some drilling, plastic, and metal. The trials are far more flimsy, hence the jolts.<br />
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It was a fairly easy decision to decide to go through with the permanent implant. I could bear about 10-15% more weight for short distances within 1 week of the trial unit being in- and SCSs become more effective as time goes on and the nerves higher up the system are less traumatized and become less irritated in general. Kind of like a wound healing. When the healing first starts, everything is more painful because there's swelling and irritation of the surrounding tissue. But as those issues fade, even if there's still a bit of a wound left, it's far less painful. Same idea. The SCS is not a cure, nor will it even likely buy me a remission period, but it should lessen the burden of quite a few of my symptoms and slow the progression of the disease.<br />
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One of the best surprises of the trial? The SCS slowed my heart rate! This is not a normal thing for them to do, but I have chronic tachycardia that is severely exacerbated by my CRPS. So my heart rate dropped low enough that I could make do on my old dose of beta blockers and still breathe, or about 80-100 bpm. I was very happy with this, as I'm currently back to my newly doubled dose of beta blockers and it's trying to tank my blood pressure, so I'm eating All the Salt.<br />
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Anyways, I'm meandering a bit. The trial was excellent. I found myself rarely messing with the remote, only adjusting the current about 3-4 times a day. I could comfortably do almost everything with it on, including sleeping. With how loose the trial is inside the body, I quickly learned to not do anything that involved tensing the muscles with it on. That included going the bathroom, coughing, and crouching (which my hip hates anyhow). I chose to use the on/off button on the actual unit strapped to waist most of the time, as I hated shuffling back across the house for the remote. I figure I'll carry the remote more on me for the first few weeks after the final implant.<br />
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As for personal hygiene during the trial, there was a firm No Bathing policy. I chose to go with fully unscented, sensitive skin wet wipes instead of old school sponge baths- much easier. Plus, I don't sweat much, so it wasn't a big issue for me. My hair was much, much harder to care for. I used Aveeno brand spray dry shampoo the first few days, and while it did strip the oil from my hair, I found it left my hair very limp and sad looking. After a few days, it had built up quite a bit and I felt disgusting, so I conned my dad into taking me to Great Clips (very cheap chain salon) to get my hair washed. I couldn't manage to wash it at home as I couldn't bend far enough to get my short hair away from my back. The salon was able to lean me back in one of their chairs. I had planned on my normal stylist being able to do this, but M was off for the holiday weekend, so I made do. It worked great and I felt infinitely better afterwards.<br />
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Now, to just wait for my surgery day. I'll be seeing a surgeon about 40 minutes north and the surgery will be at a hospital I've had surgery at before. (Though, really, I've had surgery in most of the local hospitals it seems...) My pre-op appointment is this upcoming Wednesday, 12/18, and surgery will be Friday, 12/27 at 1 pm EST.Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-27318886405589823792013-11-29T00:58:00.002-05:002013-11-29T00:58:36.758-05:00SCS trial, days I & II<span style="font-family: Arial, Helvetica, sans-serif;">I know I missed a post on day I, but I confess the meds they gave during the insertion made me very, very tired all day, so I fell asleep without managing a post yesterday. So I'm going to cheat a bit and post 2 days worth at once. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Day I</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The insertion started off the same way all my nerve blocks have other years. They started my IV for the procedure in a side room, then the Boston Scientific (the manufacturer) rep came in to make sure I didn't have any more questions before we started the trial. My biggest question had been that the position I was going to be in for the lead insertion is a pain relieving position for me- what if I couldn't tell well enough that the wires were in the right place? They assured me they were looking for coverage of the limbs with CRPS by the tingling sensation, called paresthesia, that the wires cause and not instant pain relief. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Once my few questions were answered, we moved to a procedure room. I was laid face first on a procedure table that has a fluoroscope parked over it and I was hooked up to monitors. They gave me some partial sedation for the procedure, using a fast acting narcotic that knocked me back a few pegs. I was draped from head to toe with only a small portion of my back exposed, then the skin was cleaned. They used a bit of local numbing medication in my back to help dull the pain, too. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The doc came in and inserted hollow needles into my back at a shallow angle (nearly parallel to the back, instead of perpendicular like many docs do- perpendicular can cause issues with insertion). Once the needles were in, he double checked the locations with the fluoroscope then wires were fed in through the hollow needles into the epidural space of the spine. Once the wires were in, the hollow needles were removed, leaving the wires behind. They double checked the location of the wires with the fluoroscope, then the BS rep hooked up the wires to current and we checked for paresthesia coverage. It took a tug or two on the wires to get the proper coverage, but once we were golden, they stitched the wires to my back then covered me from my bra line to half way down my butt in tape. My mother later got a good laugh at my expense as they quite literally put tape in my butt crack. Gee, thanks doc! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Once I was cleaned up and good to go, I was walked down the hall to small office to meet again with the BS rep. The rep hooked up the temporary unit, showed me how everything worked, including the remote, and he gave me his cell phone number in case I ran into any questions along the way. After that, they scheduled me to come back Monday to go over the experience and have the wires removed, I was given a prescription for antibiotics to prevent infection, then I was sent on my way. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I'll admit when I got home, I was extremely sore. Moving was difficult both due to the soreness and due to fear of moving the wrong way and causing a jolt. These temporary trial systems aren't anchored nearly as well as a permanent unit so it can be pretty easy to give yourself a little burst of current. I haven't found any of these little jolts to be painful, just startling. A single vicodin took care of the back pain to the extent I was able to get up and move around, though for the first part of the day, I needed help getting up and down off the toilet. I even went out for dinner! Overall, a fairly uneventful day. Everything went very smoothly, and I could tell it was going to be easy to get over the initial soreness of the wire insertion. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Day II</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Woke up today pretty achy- I'm a back sleeper and sleeping on top of the wires and belt for the unit (the temporary unit is worn on a white velcro belt- very fashion forward ;) ) left me sore. The soreness faded quickly and I was back up and about. I even helped a tiny bit with pie making at my moms for Thanksgiving dinner. I survived dinner at my grandmothers just fine with no bumps or major jolts. As the day has gone on, the pain from the wire insertion has faded more and more. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I'm not yet feeling any major pain relief from the hip pain, but the feeling of my tibia and fibula being shattered, which is a rather common issue for me, is greatly reduced by the paresthesia. I'm very hopeful that with time, more of the pain issues will fade. Many CRPS patients don't report full pain relief immediately- some people fell no pain relief for up to the first month. So since I'd doing so well thus far, it makes me hopeful. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">My biggest concern with this whole thing has been that I wouldn't be able to handle the feeling of paresthesia. Some patients fail their trial despite excellent pain relief because the buzzing drives them crazy. So far, the buzzing is weird, but not bad or crazy-making for me. I think that in time, it would just become my new normal. Plus, if I start feeling jealous that other people get to have normal sensation in their limbs, I can just turn it off. The joy of having a handy remote control. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So far, so good. I'll keep everyone updated as we go. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-61683145300454360052013-11-28T23:43:00.000-05:002013-11-29T01:43:47.136-05:00Happy Thanksgiving!<span style="font-family: Arial, Helvetica, sans-serif;">A quick post to say Happy Thanksgiving to my American readers. We had a blast today with the entire family and no one jarred my SCS wires/unit. It was a bit weird because I spent very little time with the kiddos, and normally the kids talk me into a board game. This year, their parents all told them to please leave me alone because of the trial, which was likely for the best, even if it did feel odd. I managed to get a hug from L, my favorite little cousin, who is 3 years old and cute as a button. Of course, being a stinker, he first had to hide and "refuse" to hug me, but he kept laughing so hard he almost fell over so the hiding didn't work so well. He's at such a fun age, when they start using whole sentences. Today he thanked my mom "for making yummy pies". (He's a true member of the family- he's a pumpkin pie fiend.) </span><br>
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<span style="font-family: Arial, Helvetica, sans-serif;">Some family fun:</span><br>
<span style="font-family: Arial, Helvetica, sans-serif;"><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsgp9d2sROoB_t7vhtbUDqvVVzRsuWC3xL9BZicBaG-7idPXe5aOtp6TTbBdJe9QzTmaxcHiITGR7LNmCqapdnrxitViQV4u46M1wEMkMGV5IuefBi-IQAcXSgS3_SU8rIHCfw5ry1VY1L/s640/blogger-image-1998412424.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsgp9d2sROoB_t7vhtbUDqvVVzRsuWC3xL9BZicBaG-7idPXe5aOtp6TTbBdJe9QzTmaxcHiITGR7LNmCqapdnrxitViQV4u46M1wEMkMGV5IuefBi-IQAcXSgS3_SU8rIHCfw5ry1VY1L/s640/blogger-image-1998412424.jpg"></a></div></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Dad in a pink plaid apron.</span><br>
<span style="font-family: Arial, Helvetica, sans-serif;"><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVKjbD0iRBIh__ZenwjKskBNOyuPgNWyKB45HVvod78r1sxo0Hxg9ZTAIMcn4MSKTjlubliPTxxFFY27oO83YvXBUygwhVsu2wBX0q40Z__JvwK7nirK4nsX_NTiTrLNzVm2jqonyGTWvx/s640/blogger-image--1142039630.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVKjbD0iRBIh__ZenwjKskBNOyuPgNWyKB45HVvod78r1sxo0Hxg9ZTAIMcn4MSKTjlubliPTxxFFY27oO83YvXBUygwhVsu2wBX0q40Z__JvwK7nirK4nsX_NTiTrLNzVm2jqonyGTWvx/s640/blogger-image--1142039630.jpg"></a></div></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Grandpa snoring away in his chair after dinner. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0tag:blogger.com,1999:blog-5668203864565849852.post-8179619598410286642013-11-28T21:55:00.000-05:002013-11-28T21:55:25.780-05:00CRPS/RSD Treatment, part I<span style="font-family: Arial, Helvetica, sans-serif;">I've been promising an overview on CRPS treatment options that currently exist and keep forgetting to do so. I wanted to make sure to get to this before the end of November and the end of CRPS Awareness Month. I won't be going super in depth into anything here in this post, but please feel free to ask any questions. I'm always very happy to help. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>1) Medications</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>1a) Anti-epileptics</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Anti-epileptics, such as Lyrica (pregabalin) and gabapentin, are used to control neuropathic (nerve-based) pain. They can be disorientating at first and I always recommend not planning on driving when very first starting or making a big dose change. I actually find a huge dose change on these to be as or more disorientating as a change of my narcotics dosage. They are usually a first line treatment and can be very effective. Lyrica and gabapentin are related, with Lyrica being the newer of the two. Lyrica is taken 1-2 times per day, and gabapentin is taken 3 times a day. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>1b) Narcotics</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Narcotics are very commonly used in the treatment of CRPS. CRPS tends to be very resistant to treatment, so the big guns tend to be necessary to provide even a sliver of comfort to the patient. There are short acting medications, like Percocet (oxycodone) and Vicodin (hydrocodone), as well as long acting meds like Oxycontin, MS Contin (morphine), fentanyl patches, and Butrans (buprenorphine patches). Many patients use both a short acting and a long acting med. The long acting medication gives a blanket level of pain relief and the short acting is for flare ups of pain, also known as "Breakthrough Pain". These meds come with a host of side effects such as constipation and legal ramifications (many doctors require random drug screening while you're on these meds, to make sure you're taking your meds on schedule at the correct dose and <i>only </i>your meds), but they can be extremely useful. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>1c) Others</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">There a couple other types of meds used in the treatment of CRPS. These can range from anti inflammatories like Meloxicam to the immunosuppressant MTX (methotrexate) to a class of antidepressants called SNRIs. I currently take the SNRI Savella and while I find it doesn't lower my pain any it does make me care a lot less about the pain and it makes it easier to get out and do things despite the pain. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>2) Physical Therapy</b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">PT is ESSENTIAL for the proper treatment of CRPS, but it must be done <i>correctly.</i> Things need to be taken slowly and surely. Very slowly. I've not had the best luck with PT centers that specialize in sports injury patients. The best therapy I've personally found is at a local rehab hospital, where most of the patients are transitioning between a hospital stay and going home. The biggest thing is to find a physical therapist who has experience working with CRPS, which can be tough to do. If there's no one in town who's already familiar, find a therapist who is very curious and willing to do some research and learning. I always recommend warm water physical therapy as it helps with allodynia in addition to pain. For more details on PT and CRPS, feel free to check my other blog posts using the tag "PT".</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>I was</b> going to try to fit this in 1 post, but even keeping things short and sweet, it's becoming a bit epic in length. To keep things easy and readable, I'm going to break this up into 2-3 posts. </span>Cassiehttp://www.blogger.com/profile/06143599941651150754noreply@blogger.com0