tag:blogger.com,1999:blog-41264345328002695642024-03-16T14:52:06.550-04:00Adventures in LymelandWelcome to my blog, where I share my struggles and triumphs in my fight against chronic Lyme disease. It's not always easy, but it IS possible to live in harmony with Lyme disease!alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.comBlogger240125tag:blogger.com,1999:blog-4126434532800269564.post-65107091819032925682014-05-22T23:40:00.000-04:002014-05-22T23:40:04.087-04:00The Big Bad Wolf<div class="_38 direction_ltr">
<span class="null">My blog has been
deep in hibernation for many months as I've been cozied up in my den
with my wee baby girl. But ever so softly (and then louder and louder
AND LOUDER) my heart has been crying
out to write again; my soul
needs to unburden itself of this heavy load that's been silently weighing it down.<br />
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My baby is no longer a
newborn--she's nearly seven months old. And for those seven months--as I've watched my health slip--I've
played the part of Little Red Riding Hood, post that whole
my-grandma-is-a-wolf fiasco. Every leaf rustling on the way to Grandma's
house is a wolf. Every symptom coming back is unnerving. My basket of
goodies is filled not with sweets, but instead with fear and uncertainty. <br />
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But (and that's a big BUT), I beat this disease into remission once, and I WILL do it again. However, if you have never lived a day
with Lyme disease, you cannot truly know the wolf that stalks you. The
fear. The terror. The uncertainty. The unknown. The <i>what ifs</i>.<br />
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The
big bad wolf has me on his dinner menu, but I'm not going down without one hell
of a fight. And the first step is admitting this much: I'm sick again.
I have to swallow a million pills a day again. I'm scared. I don't want to go through this
again. I hate this disease. What I want more than anything, is
to educate others so that they never have to go through the pain of
this disease. For me. For
you. For the big bad wolf, snarling at me and eying you up, next.<br />
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<tr><td class="tr-caption" style="text-align: center;"><a href="http://en.wikipedia.org/wiki/File:Carl_Larsson_-_Little_Red_Riding_Hood_1881.jpg">Little Red Riding Hood</a></td></tr>
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Check yourself, protect yourself; know the symptoms. And if your grandma has fangs, <i>run like hell!</i><br />
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alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com10tag:blogger.com,1999:blog-4126434532800269564.post-68097680323772768592013-12-02T21:34:00.000-05:002013-12-02T21:34:37.099-05:00Pregnancy, Birth and Lyme Disease<div class="separator" style="clear: both; text-align: left;">
After being in remission from Lyme disease and finally getting off of antibiotics at the beginning of this year, I found out I was pregnant so I had to get right back on antibiotics to help prevent the Lyme from crossing the placenta. I'll have to admit, it was hard swallowing those icky tasting antibiotics* again. I questioned if that was really all it took to save my baby from this dreadful disease.</div>
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Although it was a very difficult pregnancy, my health held up wonderfully well throughout the entire pregnancy. In the third trimester, my Lyme doctor wanted me to add Azithromycin in, but when I did, some of my Lyme symptoms came back, which panicked me since I had been totally symptom free. I immediately stopped taking it and the symptoms went away as quickly as they had arrived. My doctor said that was a pretty strong indicator that my symptoms would come back after the birth.</div>
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My baby was born peacefully at home on November 1st, 2013. </div>
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<span style="text-align: -webkit-auto;">My sweet little baby girl is now one month old. Every day, I've looked into her perfect little face wondering if I passed my Lyme disease to her. After her birth, we sent off a sample of her placenta to be tested by a tick-borne specialty lab (Igenex) for Lyme disease. It's been a long four weeks of waiting, but...</span></div>
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...we got her test results back today and <b>SHE'S NEGATIVE!! </b><br />
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Unfortunately, my doctor was right and some of my symptoms <i>have</i> come back since the baby was born. My visual problems are back (it's like a fog on my glasses that won't wipe off), which was my very first Lyme symptom, and I have mild joint pain. I'm still taking Ceftin, and I had no other choice but to give the Azithromycin (the antibiotic that I couldn't handle during the pregnancy) another try. I've been on it for a little over a week now, and my joint pain is much better and my energy level is back to normal. I'm still struggling with the visual problems, but it's better than it was before I got back on Azithromycin, and I'm hopeful that it will continue to work its magic and that this protocol will be enough to keep my symptoms under control. </div>
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**I did Bicillin injections for the first trimester and took Ceftin for the remainder of the pregnancyalyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com10tag:blogger.com,1999:blog-4126434532800269564.post-32819301152528120792013-11-28T15:28:00.001-05:002013-11-28T15:28:28.980-05:00Happy ThanksgivingThis Thanksgiving, I'm thankful for my miracle:<br />
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com0tag:blogger.com,1999:blog-4126434532800269564.post-65992126281562162222013-09-23T22:49:00.001-04:002013-09-23T22:49:29.077-04:00Up until very recently, according to the CDC's website, there were around 30,000 cases of Lyme disease reported annually in the United States. In the last few months, however, the CDC released an explosive statement saying that reports are showing that the number of cases is at least<i> </i>10 times higher, making it closer to 300,000 cases of Lyme disease a year.<br />
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The CDC has always taken the stance that all cases should be treated with 2 to 4 weeks of antibiotics. Shunning the idea of chronic Lyme disease, they came up with their own fancy term for it: Post-Treatment Lyme Disease Syndrome (PTLDS). Now, if you mosey on down to their website and <a href="http://www.cdc.gov/lyme/postLDS/index.html">pull up the page on PTLDS</a>, the first thing you will read is this, "Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches."<br />
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Hold your horses, now! Remember, the CDC just updated the number of cases to at least 10 times higher. So now, instead of 10 to 20% of the much dinkier 30,000 purported cases annually, that's now at least 30,000 to 60,000 people a year who are not responding to the recommended 2 to 4 weeks of antibiotics!<br />
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I remember pausing and reflecting at the four week marker in my treatment. I thought to myself, "This is it; according to the CDC, this is as good as I can ever feel." I shudder to think about what would have come of myself if I would have accepted that fate.<br />
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But I'm one of the lucky ones; I've been in remission for almost ten months now and not a day goes by when I don't think about how lucky I am to have had a doctor who was willing to put her job on the line for me and others like me. She was fired this summer for treating her Lyme patients with more than the CDC recommended 2 to 4 weeks of antibiotics, despite the fact that patients like me are now symptom free and pain free for that very reason!<br />
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I'm more than ready to hear what the CDC plans to do about the 30,000 to 60,000 of us annually who don't get better with 2 to 4 weeks of antibiotics. Because, quite frankly, this (taken from the same link <a href="http://www.cdc.gov/lyme/postLDS/index.html">above</a>) is absolutely unacceptable: "Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."<br />
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com0tag:blogger.com,1999:blog-4126434532800269564.post-4176887797232163352013-08-27T22:14:00.000-04:002013-08-27T22:14:18.460-04:00Update...Finally!Hello, all! I never intended to take a hiatus from blogging, but sometimes life has other plans. To get you back up to speed, here is what's going on with my life:<br />
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I'll start with the hardest part first. My doctor lost her job for treating Lyme disease. I wanted to honor her with a fabulous post about the injustices of what happened, but I think I'm going to need a little longer to heal from my anger and pain at the medical community for firing her before I am able write an unbiased post that can help raise awareness for Lyme disease. (If you're reading this Dr. P., I will keep my promise! It's just taking more time than I thought.)<br />
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My health is holding up fairly well during this pregnancy. I am 30 weeks pregnant now! I am still in remission and seeing a new Lyme doctor who is treating me with antibiotics to prevent (hopefully!) my Lyme from crossing the placenta. The baby is a little girl, which I am thrilled about since I have two boys already!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinIrtd4cVOKnUxzvOxAcbOfmaW1yQBvgLUvUW9N8UXA2L-LREvxLVP9TyekSgl8Djc-ilOMibo6wuE_70JydkdYlbx7ogqH3uL2hnpCPEdv_gZDqUiTxIVYmluKS_w5Mx6S0Zr42-_03CE/s1600/Aly+PG.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinIrtd4cVOKnUxzvOxAcbOfmaW1yQBvgLUvUW9N8UXA2L-LREvxLVP9TyekSgl8Djc-ilOMibo6wuE_70JydkdYlbx7ogqH3uL2hnpCPEdv_gZDqUiTxIVYmluKS_w5Mx6S0Zr42-_03CE/s320/Aly+PG.JPG" width="288" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's me on vacation a few weeks ago.</td></tr>
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After spending month upon month sick beyond words and not knowing if I'd ever get better, I just can't believe where I am at in life right now. I always felt like someone was missing from our family, but I really thought that door was shut forever because of my illness. Life had other plans for me, and this is truly my miracle baby!</div>
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<tr><td class="tr-caption" style="text-align: center;">Here's my little sleeping beauty.<br />
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I also just started homeschooling my youngest son for Kindergarten last week, so I've been very busy. I am so excited to be able to homeschool again! I had been homeschooling my oldest son when I got very sick from Lyme disease and had to make the difficult decision to put him in public school. Thankfully, he adjusted very well and is quite content stay put in public school while I homeschool his brother.<br />
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There's a lot more I'd really like to say, but I just want to get this update out and break my accidental, unintentional absence from the blogging world!<br />
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alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com5tag:blogger.com,1999:blog-4126434532800269564.post-43520745960126761502013-04-18T14:14:00.000-04:002013-04-18T14:14:11.886-04:00Well, If You Mustache...<div class="separator" style="clear: both; text-align: center;">
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Oops, I just realized it's been over a month since my last post! I'm still in remission from my Lyme disease, still feeling great, and for the first time in as many years as I can remember, I am pain free--something I never expected to be able to say, since I developed symptoms of Lyme after my first tick bite as a child in the '80s. I do live with the fear that my disease could come out of remission at any time and that's a scary thought, but I am choosing to focus on the present, and right now that means I am healthy and loving every second of it.<br />
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I apologize for the huge lapse in posting, but there's a pretty big reason for it.<br />
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I am 12 weeks pregnant with my third child! Lyme disease causes a high rate of miscarriages, so I've been walking on eggshells; it's been a terrifying, but exciting few months.<br />
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Even though I am in remission, I am on antibiotics to prevent the disease from crossing the placenta. I enjoyed my brief hiatus from antibiotics, but I'm back on Bicillin intramuscular injections (shots in the butt). I did not know I had Lyme disease during my other two pregnancies, and both of my children have tested positive for my tick-borne illnesses.<br />
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The thought of potentially passing this disease on to a third child has been a heavy burden, as this baby was a very wonderful surprise, but knowledge is power, and this time we know what we are up against. Even though I'm on antibiotics, I could still pass it on; however, I take comfort in the fact that my Lyme doctor is incredible and I have the very best care out there.<br />
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After all that I have been through these past few years, I still need to pinch myself every day--I can't believe I am healthy, pain-free, and carrying new life! To my Lyme friends out there who are struggling--never, never give up! Your miracle could be right around the corner! There were so many days when I never thought I would get better; so many days when my pain was so excruciating I wanted to quit. But if I had, I would have missed out on my miracle!<br />
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Well, I'm signing off now; my brand new extra-light weight/extra big pregnancy hula hoop just came in the mail and it's calling my name! :)<br />
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com9tag:blogger.com,1999:blog-4126434532800269564.post-76246522037880505262013-03-13T10:08:00.001-04:002013-03-13T10:11:13.387-04:00RemissionEarlier this month, a few close friends helped me celebrate three months symptom free--REMISSION--from my Lyme disease! It was such a good weekend! I'm so grateful to have such wonderful people in my life who have been there for me through the good and the bad!<br />
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Remission with Lyme is a precarious thing; the rug could be pulled out from under my feet again at any time, and that is a scary thing, but I choose not to dwell on that. My goal is to keep my body and my immune system in tip-top shape. I am not a morning person, but I'm learning to use the mornings in way to set a positive tone for the rest of my day.<br />
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I start off each day with a healthy breakfast--usually steel cut oats with blueberries, and I wash it down with a kombucha in a fancy glass. Steel cut oats take about 20 minutes to cook, so after I've checked on our pet Sea-Monkeys (!!!), I use the rest of the 20 minutes to hula hoop, my favorite way to exercise. I can't emphasize what a big difference exercising in the mornings has made in my day. I have so much more energy the rest of the day.<br />
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If I'm not careful what I eat, I pay for it: My muscles ache so badly and I feel very lethargic.I have such a sweet tooth, and trying to keep my sugar consumption under control has been my biggest hurdle. I've been trying to use my juicer at least a few times a week.<br />
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I'm still going to keep blogging even though I'm in remission, but probably less frequently. I wish you all the best!<br />
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com17tag:blogger.com,1999:blog-4126434532800269564.post-20295807074163163572013-02-07T00:37:00.001-05:002013-02-07T09:01:44.438-05:00Snow Globe<span style="background-color: white; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">If I close my eyes, I can still see myself--that little blond-haired, blue-eyed girl with the lop-sided dimples--mesmerized by one of my grandmother's pretty little musical snow globes; tiny fingers, touching the enchanting tiny, magical world before me. I can see myself, standing there, breath fogging up the make-believe world precariously balanced in the palms of my clumsy, childish hands. Suddenly, ferociously, I shake, and everything is covered in a blanket of softly falling snow and I'm lost in the tinkling music.</span><br />
<span style="background-color: white;"><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">The music stops, my eyes open and here I am--now a dark-haired, blue-eyed woman, peering out from behind thick glasses--so far away from that little girl, full of magic and wonder. Y</span><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">esterday, though, </span><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">I went sled riding for the first time in many years. There I was, barreling down the hill, roaring with belly laughs and with happy tears streaming down my cold, rosy cheeks. The little blond-haired girl in me came out to play for the first time in a long, long time and reminded me how much I had missed her. </span></span><br />
<span style="background-color: white;"><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span>
<span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">It's hard to think of yourself as an innocent young child, knowing all that life will throw at you in the future. Battling Lyme disease is the most difficult thing that I</span><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"> have been through and I know that I will have to go through many, many more difficulties, but that is what makes life so precious and all the more worth truly living: the beauty, the love, the triumph. </span></span><br />
<span style="background-color: white;"><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span>
<span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">Life is so-often a struggle, and it's easy to let our difficulties steal the magic of life away from us. But, there's a child who remains in each and every one of us, triumphantly shaking that snow globe, waiting for the magic, waiting and hoping to come out and</span><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"> play again; to once more find the beauty in the little things. </span></span><br />
<span style="background-color: white;"><span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span>
<span style="font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;">So what are you waiting for? Shake, shake, shake that snow globe and let life's magic fall upon you. You're never too old to be young again. </span></span><br />
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<span style="background-color: white; font-family: georgia, 'bookman old style', 'palatino linotype', 'book antiqua', palatino, 'trebuchet ms', helvetica, garamond, sans-serif, arial, verdana, 'avante garde', 'century gothic', 'comic sans ms', times, 'times new roman', serif;"><br /></span>alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com0tag:blogger.com,1999:blog-4126434532800269564.post-22952478057663805312013-01-31T00:24:00.000-05:002013-01-31T00:24:12.347-05:00VictoryI watched a video this evening with clips from a woman's difficult battle with Lyme disease and it brought me to my knees, because it was my story, too. Watching her, I saw myself lying on the floor, unable to move. I saw myself too weak to make it up and down the steps. I remembered the times I had to be carried. I saw myself having convulsions; not knowing if I was going to survive this disease. And the pain; oh, the pain...That video was like watching my own journey, only the tears streaming down my face tonight were tears of victory, because I am winning my battle!<br />
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In just shy of one week, I will have been completely off antibiotics for Lyme disease and my multiple other tick-borne illnesses for two whole months and I'm still doing really well! For the first time that I can remember, I've had days with absolutely no pain in my body. The horrible pain that I've endured in my legs for years--one of my most maddening symptoms--is miraculously gone.<br />
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My doctor says that if I make it three months without antibiotics and am still doing this well, I will be in remission! I've endured so much and worked so hard for this. I want to scream it to the world, shout it from the rooftops, "REMISSION!!!!!!!" But, alas, I'm not quite there yet.<br />
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I've been through so many ups and downs with this disease and it really has been a classic case of one step forward, two steps back. Actually, it's been more like 1/16 of a step forward and 3 miles backwards down a hill, barefoot, in the snow, blindfolded. So it is with a healthy dose of caution that I am getting my hopes up for remission. I won't hug any strangers on the street just yet; however, if I make it my three months, all bets are off! Free hugs for everyone in my town; no, in my state; no, in the WORLD! (Healthy dose of caution, schmelthy dose of caution!)<br />
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Last night, I had night sweats for the first time in months--a big symptom of my co-infection babesia. But I'm thinking that it was actually my body finally rejecting the 100 blankets that it has always taken to keep me warm. My body is actually learning how to regulate its temperature again!<br />
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Last night, my night sweats were so bad that I had to get up and change my clothes in the middle of the night. The shirt that I was wearing happened to be my lime green homemade "Lyme Disease Survivor" shirt, and it did not survive the night. I couldn't help but laugh at that.<br />
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Like my survivor shirt, I've taken quite a beating. My shirt may have a letter that was put on upside-down and backwards, it has an olive oil stain that refuses to come out, an ice cream stain announcing my sugar addiction and it is faded from being washed so many times, but I still wear it proudly.<br />
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Hell, maybe I won't actually toss it in the wash and I will keep the smell of sweat on it that I have earned from beating the bejesus out of Lyme disease! Ew, no, nevermind. You can just read about my victory on here. That ratty thing is going in the wash right now...<br />
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com2tag:blogger.com,1999:blog-4126434532800269564.post-38513887164311288042013-01-17T01:37:00.001-05:002013-01-17T09:17:56.824-05:00Borrelia Miyamotoi<div class="separator" style="clear: both; text-align: center;">
This is a picture of me three years ago, shortly after I finally figured out why I was so sick: chronic Lyme disease--a controversial illness whose very existence is hotly debated by doctors. Is it real? Is it made up? While doctors are arguing, people are dying. I'm one of the lucky ones--though I came close, I didn't die. </div>
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This picture is incredibly difficult for me to look at. This is me at my sickest. I was so sick and, despite the fact that I was eating like a teenage boy, I had dropped 20 pounds from my already slender frame. As you can see, my size 0 jeans are hanging off of me.<br />
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Though much of my life from that period is a blur, I remember perfectly the day this picture taken. I was in so much pain that I could barely stand up. See that death grip on the rail? See the way I'm standing, trying to take the pressure off my legs? My body was shutting down and I honestly didn't know if I was going to make it. Every day was a struggle to survive and the pain was just unimaginable.<br />
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I can't understand how anyone could be allowed to so obviously waste away, yet be told by doctor after doctor, "There's nothing wrong with you," or "You're just depressed." "We don't have Lyme disease here." I was so weak I often had to be carried; there were many days when I had to crawl to get from room to room.<br />
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Thankfully, <i>miraculously</i>, I found a doctor who was willing to help me. She believed me when no other doctor did. Because of her, I now look like this. It took two and a half years on antibiotics, but I'm now back up to my normal weight and I'm feeling wonderful again!<br />
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<span style="font-family: inherit;">Today, several articles came out <a href="http://news.yale.edu/2013/01/16/so-new-it-doesn-t-have-name-yale-researchers-discover-tick-borne-infection" target="_blank">announcing a new tick-borne infection that was recently found in humans</a>-- known at this point as Borrelia miyamotoi. </span>According to this <a href="http://www.nytimes.com/2011/09/20/health/20tick.html?_r=0">article</a>, scientists identified Borrelia miyamotoi in ticks in Connecticut over a decade ago. Hold your hats; here comes the controversy: "Dr. Fish found B. miyamotoi in American ticks 10 years ago, but was repeatedly refused a study grant until the Russians proved it caused illness. “It’s been like pulling teeth,” he said. “Go ask the N.I.H. why.”<br />
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The article goes on to say: Most medical authorities, including the Centers for Disease Control and Prevention and the Infectious Disease Society of America, take the position that “chronic Lyme disease” does not exist and that those victims either have other illnesses or are hypochondriacs. They oppose the solution demanded by some self-proclaimed victims: long-term intravenous antibiotics.<br />
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Go ahead and look at that top picture of me again. How much longer could I have lived without treatment? Because of the fragile state I was in by the time I was finally tested for Lyme disease, a short course of antibiotics did nothing to eradicate the disease from my body. I was found to be suffering from not only Lyme disease, but several other tick-borne diseases that needed to be addressed before I would be well again: bartonella, babesia, anaplasma.<br />
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According to the studies of Lyme disease versus Borrelia miyamotoi, the two diseases have very similar symptoms and can be difficult to distinguish. One interesting thing to note is that B. miyamotoi doesn't cause the bulls-eye rash that Lyme disease causes. Both diseases are treated with antibiotics. Even with a bulls-eye rash, it can be nearly impossible to find a doctor who will treat you for Lyme disease. It's too early to know how many people with the Lyme-like symptoms of B. miyamotoi were turned away because they didn't have the bulls-eye rash associated with Lyme disease.<br />
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The tests for Lyme disease are horribly inaccurate; tests for B. miyamotoi do not even yet exist. That means the doctors are going to have to start believing their patients when they come in with Lyme-like symptoms. That means it is time to drop the hypochondriac stigma that has been attached to Lyme disease and other tick-borne illnesses.<br />
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It's hard to read <a href="http://www.bio-medicine.org/medicine-news-1/Deer-Ticks-Carry-Yet-Another-Bacterial-Threat-98387-1/">this</a> about the new tick-borne illness:"We've known about this bacterium for a long time -- at least 10 years," said Sam Telford III, a professor of infectious disease at Tufts University in Medford, Mass., who co-authored the report with Berardi. "It's been under our nose all this time, and a lot of us just ignored it until there was this case report."<br />
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Perhaps the medical community will take a lesson from B. miyamotoi--There is MUCH to be discovered about tick-borne diseases. It's time to drop the controversy. Here's to hoping that 2013 is the year that tick-borne illnesses are finally taken seriously!<br />
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alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com0tag:blogger.com,1999:blog-4126434532800269564.post-82338411984378180842013-01-13T22:40:00.000-05:002013-01-13T22:40:16.961-05:00Blessings In DisguiseLast month, because of a problem (on our end) with our insurance company, I wasn't able to start the new treatment protocol for my Lyme disease, which was to get a PICC line. But, this "problem" with the insurance has turned out to be a major blessing in disguise for me!<br />
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When we last left off, I was doing very, very poorly. I quit my previous treatment (Bicillin shots) because it was not working any more. My next and only option--as long as the insurance would approve it, was a PICC line. I was (and still am!) very terrified of getting a PICC line. My doctor had been wanting me to get one for months. It took a lot for me to admit that it was finally time to go that route, but the last time I saw my Lyme doctor, I told her it was time.<br />
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I figured it wouldn't be long before I started the PICC line, but because of this issue with the insurance company, my doctor hasn't been able to start the paperwork for my PICC line. I've been off treatment now for almost six weeks--the longest I've been off of antibiotics in nearly two and a half years!<br />
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So here I am, a month and a half in without antibiotics and I feel...really, really great! A few things have changed recently and I feel like they have played an enormous part in my sudden improvement. I started a few new supplements and have also been <i>very</i> strict about taking all of my supplements. One of the new ones is an <a href="http://www.naturessunshine.com/us/product/trigger-immune-tcm-conc-30-caps/sku-1034.aspx" target="_blank">immune booster</a>, a Chinese medicinal herb, and right after I started it, my energy levels starting soaring.<br />
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I was also recently diagnosed with a vitamin K deficiency, most likely from long-term antibiotics. I started a combination vitamin K/vitamin D supplement about a month ago, and I really think it has made a big difference. Another thing that I have been doing that I feel has greatly added to my health is that I am participating in the 30 day hula hoop challenge: 30 minutes of hooping a day for 30 days! It's a very difficult commitment, and I often don't get my peak energy until about 11 o'clock at night, but I'm hell-bent on finishing this challenge, and the extra exercise has really helped my body.<br />
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I know that a huge part of my feeling really great also has to do with being off of antibiotics and that's a bittersweet feeling. The fact of the matter is that I would not be here without long-term antibiotics. My body was shutting down. But how many of my "Lyme" symptoms were actually just side effects from the medicine?<br />
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It's frustrating to not be able to discuss all this with my Lyme doctor, but the insurance issue should be resolved this week (fingers crossed!) and then I can tell her what's going on. It's an unpleasant feeling for me to think that I was so sick that I was ready to get a PICC line, and now I'm doing very well without antibiotics at all! Ugh....<br />
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As I said, this whole insurance thing--while it has been a nuisance--has been a blessing in disguise. There's a new Lyme test out that tests for the actual Lyme spirochetes as opposed to just antibodies for the disease like other tests, but you have to have been off of antibiotics for at least a month to do the test. I was taking Samento, which is a natural antibiotic, so I have to wait about two more weeks for it to be completely out of my system, but I'm pretty sure I'm going to do the test. The downside is that it is expensive (around $600) and not covered by insurance.<br />
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<tr><td class="tr-caption" style="text-align: center;">A pony hug a day keeps the doctor away!</td></tr>
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While I'm feeling a lot better, I'm not symptom free. I have daily reminders that Lyme disease and co-infections are still lurking in my body, but I'm really hopeful that my immune system has kicked into high gear and can handle the threat. I'm relishing better days and hoping with all the hope in my body and soul that it lasts!alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com6tag:blogger.com,1999:blog-4126434532800269564.post-58811328916506763932012-12-19T12:07:00.002-05:002012-12-19T13:48:48.086-05:00Pet TherapyI love writing about the <a href="http://alyson1durland.blogspot.com/2012/07/hace-un-ano.html" target="_blank">"magical" healing</a> that happens in my body when I am atop my dear Icelandic horse. When I am on Fjóla, I am usually free from the pain of my Lyme disease; the second my feet hit the ground, my pain comes back. If I could live on my horse, I would!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV6erdwBrdNCXuJJUfI1JDIYZYNtu6c19SrgdQMnaVawZQ0OxewHHzAd68bbcVxB0eEQj9E7tT_RPw_O_7vvbe5fnJgJIZ3aj1uCmEnaErU8HNbglINEyhC0A_4V6JOjMibKJ3f7HKQ_fw/s1600/Aly+%2526+Fjola+swimming.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV6erdwBrdNCXuJJUfI1JDIYZYNtu6c19SrgdQMnaVawZQ0OxewHHzAd68bbcVxB0eEQj9E7tT_RPw_O_7vvbe5fnJgJIZ3aj1uCmEnaErU8HNbglINEyhC0A_4V6JOjMibKJ3f7HKQ_fw/s320/Aly+%2526+Fjola+swimming.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swimming with Fjóla</td></tr>
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Fjóla is the most affectionate horse I've ever known. She comes galloping to the gate when she sees me, she follows me around like a puppy and she stands at the gate staring at me in disbelief when I return her to her pasture. Nothing spooks her and from the first day that I met her, when she wrapped her neck around my body in a horsey hug, I knew that she had qualities that would make her an excellent candidate for pet therapy. One day, when I am not so sick from Lyme disease, I really hope Fjóla and I can pursue that option.<br />
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For now, I get my "kicks" from following a Facebook page called <a href="https://www.facebook.com/TherapyHorses" target="_blank">Gentle Carousel Miniature Therapy Horses</a>. Their adorable mini-horses travel to hospitals, nursing homes, etc. and the smiles on the faces of all--young and old alike--who meet their adorable horses are simply incredible. These horses bring such joy into the lives of those they come to comfort.<br />
<br />
I, like the rest of the country, have been in anguish over the recent shootings at Sandy Hook Elementary. My heart feels like it has been ripped out of my chest and put through a shredder. I can't even begin to comprehend the grief of those in Newtown. If I could scoop up the whole town into my arms and hold them tight, I would. Like everyone else, I feel so helpless.<br />
<br />
Two days ago, something in my newsfeed on Facebook caught my eye: It was a photo of one of the little horses from Gentle Carousel Miniature Therapy Horses, and I learned that they were trying to find a way to take a team of their horses to Newtown, Connecticut. Yesterday, I learned that a group of school children and faculty in Connecticut collected a large amount of money in an effort to make that happen.<br />
<br />
I know so many people want to help those affected by this heartbreaking tragedy, but don't know how. If you visit <a href="http://www.horse-therapy.org/" target="_blank">Gentle Carousel Mini Horses website here</a>, there is a link where you can make a donation to help with the expenses of making this miracle happen. The thought of all of those children getting to see and hug these little horses, perhaps even in their school--a place now shrouded in anxiety--will bring such peace and joy and begin to pave the way for healing.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWsZta6hJCFZ2Tkvm-RiwdhGrs9hh9vc2LfexlxfJhI28tsgL5_1cJtn3Z8h2saQKGOuNlGy_qBaLKd0GaJN1twnFxeEISVkLpLYsb_8L2-xD2ZZJqUaSbQjvdSnzcV9VxvBnhyWGVYlAD/s1600/magic.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWsZta6hJCFZ2Tkvm-RiwdhGrs9hh9vc2LfexlxfJhI28tsgL5_1cJtn3Z8h2saQKGOuNlGy_qBaLKd0GaJN1twnFxeEISVkLpLYsb_8L2-xD2ZZJqUaSbQjvdSnzcV9VxvBnhyWGVYlAD/s320/magic.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Magic, one of the Gentle Carousel Horses they are trying to bring to Connecticut. Please visit www.horse-therapy.org to meet more of their incredible horses.</td></tr>
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<br />
The children of Newtown have had their peace of mind taken away by a human being; what better way to help them heal than through the unconditional love of animals. Any amount of money you can donate to this awesome cause helps. One little girl even donated her entire allowance--one dollar--to try to help make this miracle trip happen.<br />
<br />
Newtown, we love you so much and our hearts are breaking for you!<br />
<br />
<br />
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<span data-ft="{"tn":"K"}" id=".reactRoot[13].[1][2][1]{comment10151379077028900_9210249}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[13].[1][2][1]{comment10151379077028900_9210249}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[13].[1][2][1]{comment10151379077028900_9210249}.0.[1].0.[1].0.[0].[0][2].0.[0]">"The best thing for the inside of a man is the outside of a horse." --Ronald Reagan</span></span></span>alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com0tag:blogger.com,1999:blog-4126434532800269564.post-75479603390371474992012-12-11T10:32:00.000-05:002012-12-11T11:15:47.265-05:00Don't PICC On Me!While most people will be kicking off the new year with high hopes and sparkly new resolutions, I will most likely be kicking off early 2013 with <a href="http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter" target="_blank">a PICC line</a> in my arm. I <i>know</i> I need to do this, but I'm really struggling to accept getting a PICC line. Lyme disease has me in a headlock and I'm crying uncle; I <i>know</i> this is the next step, but, <span style="font-size: x-small;">but</span>, <span style="font-size: xx-small;">but</span>...<br />
<br />
The things that I love to do are going to be greatly hindered, if not right smack at the tippy-top of the No-No List with a PICC line: being at the barn/riding my horse, playing my drums, hula hooping. Though we don't know for sure at this point, I'm told I could possibly have my PICC line for six months. There's no way around the fact that this treatment is going to be difficult and inconvenient.<br />
<br />
Someone once told me that I have a very creative way of solving problems. That may have been a polite way of saying that I am headstrong, stubborn and persistent. Lucky for me, in the case of chronic illness, those are pretty good traits to have! They help me to endure when life is throwing lemons (and Lyme!) at me.<br />
<br />
If you tell me I can't play drums because I have a PICC line in my arm, I will tell you that the drummer from Def Leopard only had one arm. If he could drums with only one arm, so can I! (Apologies in advance to my neighbors!) If you tell me I can't hula hoop around my upper body, I will tell you I can hula hoop with my lower body. I've even seen people do some pretty cool hooping tricks with their feet!<br />
<br />
I don't want to put myself in an environment where I am putting myself at a great risk for infection because of my PICC line, but if you tell me I can't be at the barn, well, my heart will break into a thousand pieces. I will probably show up at the barn anyway, maybe in a biohazard suit or perhaps with my arm wrapped in bubble wrap. If you tell me I can't ride my horse, I will tell you I can still groom my horse. And if you tell me I can't groom my horse, I will tell you I can still bring a blanket and lie in the grass next to her. I will find a way to do the things I love to do. (These same traits make me a rather difficult patient for my poor doctor, sometimes.)<br />
<br />
Is it any wonder that today, I randomly came across this quote that I love: Don't let what you <i>cannot</i> do interfere with what you <i>can</i> do. While I haven't quite come to terms with having to get a PICC line, I am taking baby steps toward acceptance and I know that I will find a way to do the things that my heart needs to do to make it through the dark days of treatment. <i>I will find a way. </i><br />
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alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com16tag:blogger.com,1999:blog-4126434532800269564.post-74778007071059166752012-12-02T16:59:00.001-05:002012-12-02T17:08:44.753-05:00A Horse is a Horse, Of Course!Here's an interesting lesson I learned yesterday: Don't ever ask a horse a question if you're not prepared for the answer. I had a tender heart-to-heart with my wise Icelandic horse, Fj<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px;">ó</span>la, and her response to my dilemma was, um, <i>well...</i>quite unique. But, first, let me recap what has been going on.<br />
<br />
I've had a very severe decline in my health, and my current treatment (intramuscular injections) for my Lyme disease is no longer working. Treating a very complicated case of Lyme disease along with multiple other tick-borne diseases is very difficult and it's common to hit a plateau (sometimes multiple times) during treatment. If one thing doesn't work anymore, then you have to try something else.<br />
<br />
The disease is running rampant through my body and my shots are no longer helping. I'm in severe pain again and I have to push myself very hard just to function at a rather depressing level, but at this point I am still able to function and for that I am very grateful. I want to avoid at all costs going back to that very dark place where I am bed-ridden again and I feel like it's coming soon if I don't take action.<br />
<br />
My doctor has been telling me for months that she thinks I need <a href="http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter" target="_blank">a PICC line</a>, and I think I am finally coming to terms that it's coming to that. My neurological symptoms are very, very bad and sometimes I have great difficulty with my speech and I feel drunk. My memory is deteriorating rapidly and I am starting to feel like an Alzheimer's patient again.<br />
<br />
I'm very, very, VERY scared of getting a PICC line, but right now it's one of my best options for remission. There are many serious risks involved so I have been painstakingly weighing the pros and cons, but at this point, my disease is winning and I am being robbed of the ability to function without severe pain. I am a fighter and I have not come this far to give up. I will do what it takes to get better!<br />
<br />
This decision is not an easy one and I know that many of you will be very concerned by the risks associated with a PICC line and may not understand my decision to go this route (if I do). I still have many unanswered questions myself and much research to do before my decision is finalized, but I am leaning heavily toward this option.<br />
<br />
Back to my experience with my horse, Fj<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px;">ó</span>la yesterday. I drug myself out to the barn hoping a little horse therapy would do me good, but by the time I got there I was so exhausted I had to lay in the car with my feet propped up before I could get out. She saw me coming and came running and calling to me, which makes me smile no matter how sick I feel! I got her out of her pasture and really wanted to ride her, but all I could do was alternate between brushing her and then resting while she grazed.<br />
<br />
I ran out of steam pretty quickly, so I put her back in her pasture and she did what she always does, which completely melts my heart--she stayed by the gate staring at me in disbelief like, "Are you <i>sure</i> you're done playing with me?!" So I sat down on a big rock in her pasture and she opted to stay by my side, instead of following her horse friends to the other side of the field. She stood as close to me as possible and I swear this horse was never given the message that she is not a lap dog!<br />
<br />
So, since she apparently wanted to help, I told her my troubles. I told her I didn't know what to do about the PICC line and I told her how I was just so damn tired of feeling so horrible day after day. I cried and she nuzzled and snuffed my face and shared some disgusting bits of pre-chewed grass. (Don't worry, I lovingly declined the gesture!)<br />
<br />
And then I said, "Fj<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px;">ó</span>la, I just don't know what to do! <i>What do I do</i>?!" And then? She walked to her water trough, took a huge drink of water, came back to me and suddenly released the entire contents of her unswallowed drink of water/chewed up grass all over my lap! If you didn't know, horses can hold a lot of water in their mouth...<br />
<br />
So, yeah, ask a horse a question and it may not be the answer you're looking for. But I got the feeling that she was saying, "Pal, whatever will be, will be. I can't decide for you; I'm a horse! But whatever you decide to do, I will be here for you, because I love you."<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9nj5ZgpwAKgc0fZtJ1ZIAz4ldZMLHyIRFoxqzCdVhlXDofCKg7EHHBqJmdpt87wkNql_tJeVG1ffgOdm3y0Y5ZBQHQ8LHUchwl65GFVVAV6_bULicCzVs1eMvVwLKmbKIpqhodWizoXAg/s1600/aly+fjola.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9nj5ZgpwAKgc0fZtJ1ZIAz4ldZMLHyIRFoxqzCdVhlXDofCKg7EHHBqJmdpt87wkNql_tJeVG1ffgOdm3y0Y5ZBQHQ8LHUchwl65GFVVAV6_bULicCzVs1eMvVwLKmbKIpqhodWizoXAg/s320/aly+fjola.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing soccer on <span style="font-size: small; text-align: start;">Fj</span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small; line-height: 16px; text-align: start;">ó</span><span style="font-size: small; text-align: start;">la</span></td></tr>
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com7tag:blogger.com,1999:blog-4126434532800269564.post-82559149850541278012012-11-24T22:54:00.000-05:002012-11-24T23:27:07.472-05:00Santa Claus, Please Accept My Heartfelt ApologyI have a confession to make: Today, I made Santa Claus cry. But, in my defense, he does have a very big heart! You see, today my family and I went on a trolley ride with Santa. As you can imagine, it was a whole lot of fun for both young and old alike.<br />
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When it was our turn, Santa asked my kids if they were good and also asked what they wanted for Christmas. And then, well...Then he asked me the same questions. And suddenly, without realizing what I was doing, I looked poor dear Santa Claus right in the eyes and choked through my tears, "Please Santa, I'm very sick, and all I want for Christmas this year is a cure for Lyme disease."<br />
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And Santa--sweet, jolly Santa--looked back at me with big tears in his eyes, caught completely and utterly off guard. <i>Oh dear lord, what have I just done?? I just made jolly old Saint Nick cry! </i>He didn't know what to say; and I don't blame him. Now I know why he only asks kids what they want for Christmas!<br />
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So let me just take this minute to apologize:<br />
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Dear Santa,<br />
I'm sorry I made you cry.<br />
<br />
Love,<br />
Alyson<br />
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PS Thanks for my pony.<br />
PPS I will leave you extra cookies this year.<br />
<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com1tag:blogger.com,1999:blog-4126434532800269564.post-46504715535450230352012-11-19T22:36:00.002-05:002012-11-19T22:36:33.280-05:00Finding PeaceI've hit a rough patch in my battle against Lyme disease. I was doing so well, and then, suddenly, <i>not</i> well. These past few weeks have been a struggle and I've been frustrated and very sad with how quickly and unexpectedly things went downhill.<br />
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No matter how I try to shake it off, this question just keeps haunting me: <i>Is the rest of my life going to be this incredible struggle with my health? </i>I wish I knew the answer to that question, but I don't; my answer differs depending on how I'm feeling at the moment.<br />
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I realized something very important yesterday: This journey I am on is not about whether or not I am cured; it's about learning to be at peace with my body <i>regardless</i> of whether I am sick or well. Much as I wish there were, there is no magical handbook on what to do when faced with chronic illness. I only have this blog where I can record and revisit the lessons I have learned that have brought me where I am today.<br />
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Being on the right path toward being at peace in my body means accepting the things that I cannot change. No matter how much I struggle against it, I cannot change the fact that I am battling a very severe illness and I cannot change the fact that my health is in an unpredictable state right now. But I can change my attitude toward these things.<br />
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Whether or not I am one day cured, I can still be grateful toward my body<b> right now </b>for all it has done for me. My days may not look like what I want them to look like right now, but that does not mean that I will let them slip by without soaking up as much joy as I possibly can. It's not easy, but I am trying. <i>I am trying.</i><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;"><span style="background-color: white; color: #333333; line-height: 18px; text-align: left;">"If you ask me what I came into this life to do, I will tell you: I came to live out loud."~</span>Émile Zola</span></td></tr>
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com2tag:blogger.com,1999:blog-4126434532800269564.post-90473138486896510702012-11-14T00:58:00.004-05:002012-11-14T00:58:59.857-05:00Vitamin K DeficiencyA few days ago, a friend sent me an email saying that she recently learned in a nutrition class that long-term antibiotic use can cause <a href="http://www.livestrong.com/article/491385-antibiotics-and-fat-soluble-vitamin-deficiency/" target="_blank">a Vitamin K deficiency</a> and she asked me to look up the symptoms to see if it sounded like something I might have. I hadn't heard of it, so I looked it up. Three days later, I had something very scary happen to me (trust me, you most likely don't want to hear about it) that made me extremely glad to have my friend looking out for me...<br />
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Vitamin K is important for helping your blood clot normally, so people with a deficiency can have excessive bleeding from cuts. Long term antibiotics (especially cephalosporins) can deplete your body of Vitamin K, and, ladies, one of the ways a Vitamin K deficiency can manifest is as heavy periods.<br />
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I've been noticing an increasing trouble in getting my blood to clot after my shots. As I said, I also had something very scary happen to me a few days ago that made me practically run to my doctor's office begging for a test for a Vitamin K deficiency. I am anxiously awaiting the results, thanking my lucky stars for the timing of my friend's email on Vitamin K, and I will keep you all updated on my results.<br />
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For those of you on long-term antibiotics or simply concerned about a deficiency in this vitamin, here is a list of the <a href="http://www.healthaliciousness.com/articles/food-sources-of-vitamin-k.php" target="_blank">top ten foods highest in Vitamin K</a>. Maybe this is why I've been craving asparagus lately (and absolutely nothing to do with why I've been craving ice cream!)<br />
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<tr><td class="tr-caption" style="text-align: center;">(<a href="http://en.wikipedia.org/wiki/File:Asparagus-Bundle.jpg" target="_blank">Photo Credit here</a>)</td></tr>
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com2tag:blogger.com,1999:blog-4126434532800269564.post-8672510146743850392012-09-29T08:45:00.000-04:002012-09-29T08:45:44.116-04:00AcupunctureRecently, a few of my dear friends ganged up on me and somehow managed to persuade me into trying a new doctor for treatment of my chronic Lyme disease. This doctor has degrees in both Eastern and Western medicine, and, although he came highly recommended to me, the thought of going to even <i>one</i> more doctor sounded like about as much fun as getting a root canal. But a tiny little voice inside of me said, "Go." So, I went.<br />
<br />
"Can you stick out your tongue, please?" Dr. L. asked. After a brief peek at my lovely lengua, the doctor told me with a concerned look on his face that I had blood clots. <i>Yikes! </i>"And you have very poor circulation," he went on. <i>I suppose that may have something to do with why I always feel like I'm in Antarctica even in the summer time. </i><br />
<i><br /></i>
Dr. L. did acupuncture on me and I was literally bouncing off the walls for six glorious hours. And that's all it took to convince me that this is a doctor who can really help me. I've been seeing him twice a week for two weeks now. <i>And I feel amazing!</i> I expected that he would tell me to stop taking antibiotics and that they are killing my body. On the contrary, he believes that there is <i>no</i> way you can heal from Lyme without antibiotics!<br />
<br />
I will be seeing Dr. L. in conjunction with my regular LLMD (Lyme literate doctor). I've tried acupuncture for my Lyme disease in the past (with a different acupuncturist) and really didn't notice much of a difference, but I cannot believe the difference in my body from only two weeks with Dr. L. My energy is back and I can function again. I'm able to fall asleep at a normal hour and have been able to wake up easier in the mornings, for the first time in years!! And--drumroll, please--I haven't had any of my seizure-like episodes since seeing Dr. L.!<br />
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A normal visit with Dr. L. entails acupuncture, laying on an acupressure table (heavenly!) and jade hot stone therapy. He highly recommended that I get an acupressure mat to lay on at home, which I did (thanks, mom!), and it makes a big difference. Dr. L. has seen big improvements in his Lyme patients who lay on spiky acupressure mats, like the <a href="http://www.spoonkspace.com/" target="_blank">Spoonk</a> or the <a href="http://www.nayoya.com/" target="_blank">Nayoya Acupressure Mat</a>. (I, personally, chose the Nayoya mat and neck pillow, and I really love it, but it definitely takes some getting used to! You're laying on hard plastic spikes and you have to build up a tolerance to it. It really does help my pain levels, though.)<br />
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I also have seeds (yes, you read that right!) taped to my ear to help me locate six acupressure points in my body. I am supposed to stimulate the acupressure points at least five times throughout the day. I feel like a Chia Pet!<br />
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I am very blessed to have a darn good trio of doctors working to get me better--my Lyme doctor, my acupuncturist and my neurologist. I am in good hands and I feel in my heart that these three are going to give me my life back.alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com7tag:blogger.com,1999:blog-4126434532800269564.post-3967247708253672632012-09-18T00:21:00.001-04:002012-09-18T09:53:28.542-04:00GreedyImprovement from Lyme disease is a strange and slow process. I haven't had as many of my seizure-like episodes; however, I am still having them. My energy has increased dramatically, but it comes and goes in the blink of an eye. I still have huge Lyme crashes from out of nowhere, ravaging my body with a barrage of fatigue and pain (usually lasting for a few hours at a time).<br />
<br />
Tired of being sick, I've been greedily snatching up bursts of energy like a little kid let loose in a candy store. I've ridden my horse a few times in the past week. I've worn circles in the ground, spinning around and around with my hula hoop. Yes, I love to hula hoop; so much so, in fact, that I combined the two a few days ago and hula hooped on my horse!<br />
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<tr><td class="tr-caption" style="text-align: center;">Hula Hooping (minus the horse, of course)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My Happy Place!</td></tr>
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I even got to go camping this weekend. Ever so slowly, I can feel my body starting to fight back against this dreadful disease and I can feel my Bicillin injections starting to work their magic.<br />
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Living with Lyme disease has been such a difficult journey these past few years, but it has truly opened my eyes to the beauty of life. When you have to fight every single day of your life to be able to do the things you love, they become treasured and no longer taken for granted. I hope I never forget the painfully beautiful lessons I've learned from my trek through Lymeland.<br />
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<tr><td class="tr-caption" style="text-align: center;">Me with my blind dog, Maya, who has taught me a thing or two about overcoming! </td></tr>
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com4tag:blogger.com,1999:blog-4126434532800269564.post-12433746429114175652012-09-04T23:25:00.001-04:002012-09-04T23:48:05.494-04:00A Fighting Chance<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQnZlE7Kyy3uZG2rmnQzc1Svmak4S9_B1k3RH6fo0_KKDTHtxS1h4ceHKJ47eLjV77rrg-fJDel0y-brGn3N-1rySsVbQ0aMTpB2D0f5RT1dElT97yt6rNmPJW01V6aiMm_pAEDJ2NpJ_a/s1600/Dromaius_novaehollandiae_(head)_Battersea_Park_Children's_Zoo.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQnZlE7Kyy3uZG2rmnQzc1Svmak4S9_B1k3RH6fo0_KKDTHtxS1h4ceHKJ47eLjV77rrg-fJDel0y-brGn3N-1rySsVbQ0aMTpB2D0f5RT1dElT97yt6rNmPJW01V6aiMm_pAEDJ2NpJ_a/s320/Dromaius_novaehollandiae_(head)_Battersea_Park_Children's_Zoo.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Emu! <a href="http://en.wikipedia.org/wiki/File:Dromaius_novaehollandiae_(head)_Battersea_Park_Children%27s_Zoo.jpg" target="_blank">Photo credit for this amazing shot here</a>.</td></tr>
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An emu is a very funny looking bird. It's also the name of the place where I spent my Labor Day weekend--the EMU, aka the Epilepsy Monitoring Unit. Sadly, there were no emus there. But with my wires and electrodes, I was about as funny looking as an emu!<br />
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<tr><td class="tr-caption" style="text-align: center;">All in all, there were 24 electrodes on my head and 6 on my chest.<br />
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Being in the hospital is rough. Being in the hospital with a controversial disease is a nightmare. (I have chronic Lyme disease if you're just tuning in to my blog.) I was treated respectfully, but the neurologists did make their beliefs on Lyme disease known to me. "You <i>do</i> know Lyme disease is a very controversial topic, don't you?" "Lyme disease is eradicated with a short course of antibiotics; after that you're fine. There <i>is</i> something called Post-Treatment Syndrome, but that's pretty rare." "We don't understand why you're having these "spells," but we can send you to a psychiatrist if you like."<br />
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It wasn't pleasant, but I survived my stay in the EMU-with-no-emus and I had two episodes while there. I found out today that the results of my video-monitoring EEG were completely normal; I am <i>not</i> having epileptic seizures. What a blessing!<br />
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However, if not for one thing, I would be very upset since being sent home from the EMU with nothing other than a (rejected) referral for a psychiatrist. That one thing? I had an appointment today with a Lyme-friendly neurologist. Other than my Lyme doctor, this was the only doctor that I have <i>ever</i> been to since my diagnosis who was extremely knowledgeable about Lyme disease and just how badly it can ravage the body and brain.<br />
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I cannot describe the feelings I felt today, seeing this neurologist who not only validated the immense suffering that I have been through, but told of other Lyme patients with similar things going on. This was a doctor who, instead of washing his hands of a patient with Lyme disease, was not afraid to say that there is so much that is still unknown about Lyme disease. This was a doctor who <i>treats</i> patients with Lyme disease instead of shoving them out the door, leaving them feeling baffled and discredited.<br />
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The neurologist said my episodes are a type of <a href="http://en.wikipedia.org/wiki/Hyperkinesia" target="_blank">hyperkinetic movement disorder</a>, which is caused by a problem in the basal ganglia part of the brain. I've had a very exhausting several days and my brain is struggling to wrap up this post. It's getting extremely difficult for me to write, but I really wanted to put out an update tonight, because I know a lot of family members and friends are waiting to hear what is going on.<br />
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In a nutshell, we don't know exactly what is causing my episodes. It is highly likely that they are being caused either by my Lyme disease or another tick-borne disease that I have called Bartonella (to which I believe I was very recently reinfected). The episodes may go away on their own or they may get worse; at this point, we don't know. What I do know is that I feel like I actually have a fighting chance now knowing that there are still doctors out there like my Lyme doctor and my neurologist who aren't giving up on me or others with this incredibly complex and misunderstood disease.<br />
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I have two options right now. I can do a short course of steroids (which is generally contraindicated with Lyme disease) or I can take anti-seizures medicines, which has proven to be helpful in treating these, uh, I don't even know what to call them anymore...these things. My brain is shutting down now. I need to go to sleep.alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com7tag:blogger.com,1999:blog-4126434532800269564.post-14208961620040091022012-08-31T12:07:00.001-04:002012-08-31T12:07:12.621-04:00EEG<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Packed and Ready to Go</td></tr>
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Today, I go into the hospital for my video-monitoring EEG. I will be in the hospital for at least 24 hours and possibly up to 3 days, depending on whether or not I have any episodes. My appointment was tentatively at 11 this morning; however, I was instructed to call first and make sure there was a bed available. I called this morning and no beds were available yet, so now I'm on standby just waiting and waiting to get this over with...<br />
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The instructional paper I was given says I will be poked, prodded and tortured in any way the Epilepsy Monitoring Unit sees fit in order to raise the chances that I will have a seizure while I am there. Okay, <i>maybe</i> it wasn't worded exactly that way, but it might as well have been. Mostly, I'm told it's just going to be really, really, <i>really</i> boring.<br />
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I haven't had any full-fledged seizures, or pseudoseizures or whatever it is that we are calling them since my experience in the ER a week and a half ago (and hopefully we will have a name for them after this test!). I have, however, had some "minor" episodes. I wouldn't call them bona fide seizures, but <i>something</i> crazy is still going on in my body.<br />
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I've got my bags packed (including my awesome bunny slippers) and I'm ready and waiting to get this over with. We've got a sitter lined up for the kids and my husband and I have decided we will just pretend we are on a date in a really crappy hotel. Here's to hoping this will shed some light on whatever the heck is happening inside my brain. Cheers, friends!<br />
<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com3tag:blogger.com,1999:blog-4126434532800269564.post-77815823600273988232012-08-27T01:05:00.002-04:002012-08-27T01:13:24.092-04:00A Quick UpdateIt's late and I really need to get to sleep, but I wanted to post a quick update. I haven't had any seizures, since Wednesday--<a href="http://alyson1durland.blogspot.com/2012/08/my-story-of-big-brush-off.html" target="_blank">the night that I went to the ER</a> because they wouldn't stop. More good news: My MRI results came back normal. I have an appointment scheduled on Friday, the 31st, for my video-monitoring EEG, to see if we can capture any of my episodes on video.<br />
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Today was the first day since the seizures started that I've been brave enough/felt well enough to venture out of the house for anything other than doctors appointments. We went to my favorite swimming hole--my happy place--so I could soak in the water to help my sore muscles. I also had a massage this evening, so I'm in good shape now!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKGlZbEslhsPbzQqp0IRTKRw3VtVc9c_TF9isDeoMDGRVFn40xNaw6CdiE9jgdZ494UV1rt_KZvUvoCJyca4FQX0rb5kr30nbVSpAHMR5d4QVZDcsgsx_QlZzWylESXeCIvGOR5HuWrs0_/s1600/nature+composition.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKGlZbEslhsPbzQqp0IRTKRw3VtVc9c_TF9isDeoMDGRVFn40xNaw6CdiE9jgdZ494UV1rt_KZvUvoCJyca4FQX0rb5kr30nbVSpAHMR5d4QVZDcsgsx_QlZzWylESXeCIvGOR5HuWrs0_/s320/nature+composition.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Happy Place</td></tr>
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<br />
I really wanted to share my good news and say an extra special thanks for all the love and support I have received throughout this very difficult time in my Lyme journey. Thank you all; it means the world to me! <br />
<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com3tag:blogger.com,1999:blog-4126434532800269564.post-35150883913358935212012-08-23T19:05:00.003-04:002012-08-23T19:21:51.293-04:00My Story of The Big Brush OffYesterday, I had over a dozen seizures. After a traumatic six hour ordeal in the ER, I was told by the neurologist (who witnessed an episode), "Well, you're probably just anxious and depressed because of your Lyme diagnosis." (<i>Ahem, I was diagnosed two and a half years ago, lady!!)</i><br />
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She discharged me and I had another seizure in the car. Never in my life have I felt so completely helpless and outraged by the medical community (and as a Lyme patient, that's really saying a lot)<i>.</i> <br />
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I had a CT scan and a ton of blood work at the hospital and everything came back normal. How I long for the day when instead of sending you home, the doctors will actually say, "Everything came back normal--except for your Lyme disease tests." But that's a blog post for another day...<br />
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The neurologist called my episodes non-epileptic seizures. It may be helpful to <a href="http://www.drugs.com/cg/non-epileptic-seizures.html" target="_blank">read this link about what a non-epileptic seizure is</a>. I, however, was sent home with a very <i>un</i>helpful and downright <i>demeaning</i> paper describing my supposed disorder (also called pseudo seizures) as "one with no medical cause." It goes on to state in the next paragraph that, "this disorder is caused by stress or emotional trauma." Well, which is it? Is there a cause or not??<br />
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The neurologist kept asking me in every way she could possibly think of
if I was abused, either currently or in the past. She really didn't seem to believe my answer of no. The clincher? My helpful and informative paper about non-epileptic seizures actually says, "Sometimes, non-epileptic seizures may be due to a person faking the symptoms to get something he or she wants." (I really wish I had a link to where ever they printed this off from!)<br />
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The good news is, it's already 7:00 P.M. and I haven't had a single seizure today. I must be still too worn out from my Oscar-worthy performance in the ER last night to muster up the strength to put on another show! Someone give me a trophy, because my acting skills last night were killer!<br />
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Jokes aside, I had an MRI this morning and am still waiting on the results of that. I
am also waiting on an appointment for a 24-hour video monitoring
seizure test that will hopefully shed some light on what the heck is <i>actually</i> going on. I also have an upcoming appointment in a few weeks with a more Lyme-friendly neurologist. <br />
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If you don't have Lyme disease, you probably have no idea how badly Lyme
patients are treated by numerous medical professionals who are prehistorically
out-of-date on their Lyme disease knowledge. If you do have Lyme disease, you likely have your own version of The Story of Receiving the Big Brush Off By Doctors. (Feel free to send me a link to your story and I would be happy to publish a link at the bottom of this post.)<br />
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We don't tolerate bullying in schools. So why should we tolerate it in our healthcare system? In my head I keep replaying the scene over and over again--this neurologist who refused to even <i>look</i> at me (all questions were addressed to my husband, not me) asking me the same question: Am I being abused or bullied, either now or in the past?<br />
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My new answer: Yes, my whole life, doctors <i>just like you</i> have abused me by <a href="http://alyson1durland.blogspot.com/2011/10/dreaming-of-green.html" target="_blank">discrediting me and my pain, time and again</a>. I am a person, a human being, and I am trusting doctors <i>just like you</i> with my most sacred treasure: my health. You may not understand much about Lyme disease and I'm okay with hearing you utter those words--that you simply don't understand what is happening to my body. But you do not, under any circumstances have the right to insinuate that what I'm going through is in my head or that I am making it up.<br />
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Because the truth of the matter is, I've already forgiven doctors <i>just like you</i> who were not able to see my diagnosis as Lyme disease, inadvertently causing me to suffer an inhumane amount of pain and suffering for perhaps the rest of my life from what <i>should</i> have been a curable disease, all because I let doctors <i>just like you </i>convince myself that maybe my pain and suffering <i>wasn't</i> legit. <br />
<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com14tag:blogger.com,1999:blog-4126434532800269564.post-61190219174717772442012-08-21T23:56:00.000-04:002012-08-21T23:57:25.170-04:00HopeFor over two and a half years now, I've wrestled with the same question question: How do I live in harmony with chronic illness? I started this blog to chronicle my journey and my attempts at finding peace in the midst of the chaos of living with Lyme disease.<br />
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No one can predict what the future will hold for them (except maybe <a href="http://www.youtube.com/watch?v=pWyHiV3l3MA" target="_blank">Miss Cleo</a>), but with chronic illness, it's <i>especially</i> hard to plan for the future. So much of your life is up in the air. Making short-term plans can be a nightmare; making long-term plans, nearly impossible. <br />
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When I started this blog, I didn't make feeble attempts at guessing what my health would be like "X" years down the road, but I certainly didn't picture myself so sick this far down the road.
Here I am, well into my Lyme disease journey and I've been thrown a completely new curve ball: I'm having seizures. A lot of them.<br />
<br />
This is all new to me and a lot to digest. I feel like a lot of doors are being slammed shut in my life right now. I'm trying to be gentle with myself though, and I keep reminding myself that just because a door is closed right now, does <i>not</i> mean I won't be given the key in the future. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHEa0iDcua-2X0_cLSKTLPVCWep5RAy2AweYuFczloFKYONKCw3HEJDrrl7pg_UMmuS_Hc4lyt-9FCJh5xwOxBMgn6wtUFgkQt3u6rDtaVNG7_ZX34BdHFZ8i3Ycxi9DeTw13aKKW2oKd8/s1600/door.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHEa0iDcua-2X0_cLSKTLPVCWep5RAy2AweYuFczloFKYONKCw3HEJDrrl7pg_UMmuS_Hc4lyt-9FCJh5xwOxBMgn6wtUFgkQt3u6rDtaVNG7_ZX34BdHFZ8i3Ycxi9DeTw13aKKW2oKd8/s320/door.jpg" width="240" /></a></div>
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So now I'm wrestling with a new question: How do I live in harmony with seizures? Where do I put my hopes and dreams that I've already had to put on hold for so long? I want so badly to be able to fulfill my lifelong dream of becoming a massage therapist. I want to help other people struggling to cope with the life of chronic pain, but for now, the only way I can do that is through my words on this blog.<br />
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I'm sad and I'm scared. I want answers. But I still have hope. And honestly, that's really all that matters. I <i>will</i> overcome this!alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com6tag:blogger.com,1999:blog-4126434532800269564.post-35543802281099525242012-08-20T13:05:00.000-04:002012-08-20T13:05:58.894-04:00I don't like this post already and I haven't even written it. So let me start off with something good. Two things I am grateful for about today: (One) a great <a href="http://en.wikipedia.org/wiki/Phlebotomy" target="_blank">phlebotomist</a> and (Two) the fact that my horse is boarded right around the corner from my doctor's office. Maybe you've guessed by now that I'm not doing well. <br />
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Thursday was my birthday, and I kicked it off with a seizure. <a href="http://alyson1durland.blogspot.com/2012/05/courage-is-what-it-takes-to-stand-up.html" target="_blank">I hadn't had one in several months</a>. Friday, I had another seizure. This morning I had two more episodes. Technically, we don't know if they are bona fide seizures. I've heard the terms partial seizures, pseudo-seizures and convulsions. Whatever you want to call them, they are scary.<br />
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I was able to get in to see my Lyme doctor this morning and she got to witness an episode. To make a long story short, I have to take a million medicines and I have to have a million tests done. I am nine vials of blood less than I was before my appointment (cheers to an awesome phlebotomist, though, which makes all the difference in the world!). I thought I was going to break my record for most number of vials of blood taken, but, I did not (12 is my record, <i>for</i> the record).<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH3cfaNXpJr0pR78RSh1-BLafQCUZKNX9cQ0qiyeF2yK1XBFo7u-ekKh_Q4F96sb7bGOs0xrJkUIqRFJm1pzaq1Za8OFzOkIsD0_y07AfLSlKDPGO6GIFmdLDxopHcy6sgVyYPosfBy0-9/s1600/pony+hugs.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH3cfaNXpJr0pR78RSh1-BLafQCUZKNX9cQ0qiyeF2yK1XBFo7u-ekKh_Q4F96sb7bGOs0xrJkUIqRFJm1pzaq1Za8OFzOkIsD0_y07AfLSlKDPGO6GIFmdLDxopHcy6sgVyYPosfBy0-9/s320/pony+hugs.JPG" width="247" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brief visit with my pony after my doctor's appointment</td></tr>
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So...This all stinks, and as expected, I'm scared, angry, frustrated and unhappy that all of this is happening to me. But there's not much else I can do but try to adjust, keep my chin up and stay positive. <br />
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<b>If you want to know how you can help, please consider <a href="http://lymewalks.lymedisease.org/lyme/participantpage.asp?uid=3092&fundid=1731" target="_blank">making a donation in my honor</a> to raise money for Lyme disease research. Feel free to share this post and/or link to my donation page. </b><br />
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<br />alyson1derlandhttp://www.blogger.com/profile/08293531856749728379noreply@blogger.com5