tag:blogger.com,1999:blog-30487255897317497942024-03-05T06:10:03.571-05:00Myasthenia Gravis: My storyby Claire Dentonclairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.comBlogger85125tag:blogger.com,1999:blog-3048725589731749794.post-77298126090111610312011-04-27T10:05:00.000-05:002011-04-27T10:05:13.084-05:00How Do You Do It?I have been having a hard time... mostly because of the craziness of oral prednisone. I just need to hang in there until the New Deal starts!!! I wrote a bit about what is going on at my other blog. Please check it out, and as always, feel free to share with anyone you think might benefit from my story or is willing to say a prayer and send positive energy my way!<br />
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<a href="http://blog.rememberedvoices.com/blog/post/How-Do-You-Do-It.aspx">How Do You Do It?</a>clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com1tag:blogger.com,1999:blog-3048725589731749794.post-70381219133832247572011-04-19T20:47:00.000-05:002011-04-19T20:47:23.702-05:00The New DealWhen Katherine was 3 she wouldn't answer to anything but Annie. She loved the movie, the Broadway show, and anything having to do with Annie. Jason dressed up as Daddy Warbucks and we decked the house out to resemble a mansion to celebrate her birthday. It was quite the extravaganza. Little Annie, along with the depression suffering Americans were all asking Herbert Hoover for a 'New Deal" for Christmas. <br />
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I want a new deal. I want a new plan, a new lease on life, a new chance at living without thinking about slurring, chewing, swallowing, walking, drying my hair, shaving my legs and breathing. Note that shaving my legs came before breathing. I am the queen of downplaying what is happening with the MG. Today my good friend called and asked how I was. I very slurringly and breathlessly said, "oh, I'm okay, how are you doing?" She laughed. We all laugh at me and my crazy, oh I'm fine. <br />
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I know that I am not fine. I know that without all the steroids, extra rest and copius amounts of wine that I would be hanging out in the ICU with a tube down my throat. So the new plan? The guru in Boston was all up in arms that we have been dealing with the symptoms as they come rather than trying to treat them before they hit. Kind of hard to treat symptoms before they hit when all the treatments only last for a few hours. And he acknowledged that he hasn't ever seen a myasthenic like me- one who responds to treatment within minutes only to have the drugs last for a few short hours. <br />
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Looking over my history (you would be amazed by my flow charts) I was the best I have been in the past 6 years last years after big doses of Rituxan (chemotherapy). After the Rituxan, I was able to last a full month between IV steroid infusions (solumedrol). Just to give a bit of perspective, I am now lasting about 15 hours between infusions. So the New Deal for me... every six months I will be getting 2 big doses of Rituxan which will hopefully reduce me to once a month solumedrol. In the mean-time, I am being treated with lots and lots of steroids, which leads to crazy fun (NOT) times here at home. <br />
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I have resigned myself to the side effects of the steroids until we get the chemo going. This is going to work... this is going to be the long term drug induced remission that I have been praying for. Regardless, my husband, kids and I are in for a wild ride. You gotta love a crazy Mommy. clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2tag:blogger.com,1999:blog-3048725589731749794.post-76990961353965369992011-04-13T21:38:00.000-05:002011-04-13T21:38:25.933-05:00StormsI saw the guru down in Boston on Monday. I will update everyone very soon on the new plan. <br />
Tonight's post on <a href="http://blog.rememberedvoices.com/blog/post/Storms.aspx">The Voice Library</a> is one of my favorites ever. It makes me think of so many happy times. <br />
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Again, thank you all for your continued prayers and positive energy and thoughts!!!<br />
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All the best! Claireclairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2tag:blogger.com,1999:blog-3048725589731749794.post-68035172594328203452011-04-06T19:35:00.000-05:002011-04-06T19:35:43.293-05:00Getting My Groove BackHi everyone! I updated the other blog and it pretty much fills you all in on what is going on with my crazy MG roller coaster ride. <br />
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There is a smile on my face, and I continue to ask for your prayers and good thoughts! Thank you all for following my journey and for thinking of me and my family!!!!<br />
Please see the link below. <br />
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<a href="http://blog.rememberedvoices.com/blog/post/Claire-Gets-Her-Groove-Back.aspx">http://blog.rememberedvoices.com/blog/post/Claire-Gets-Her-Groove-Back.aspx</a>clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-4872376125673687752011-03-30T22:40:00.000-05:002011-03-30T22:40:35.679-05:00Heading Out the Door<a href="http://blog.rememberedvoices.com/blog/post/Heading-Out-the-Door.aspx">http://blog.rememberedvoices.com/blog/post/Heading-Out-the-Door.aspx</a><br />
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Everyone who follows this blog, I ask for your prayers. There are so many out there who deal with so much more than I do on a daily basis, and this makes it hard for me to ask for help.<br />
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That being said, my life is not 'normal'. My worries are certainly about my husband possibly being deployed or furlowed from the military, my kids getting sick, my pets getting older and my house and finances being in order. My biggest worry, and the one that I try to fake being okay with is my health. I am healthy. Other than this disease that hangs over me every second of every day. I would not have to think about my kidneys or my blood pressure, or my liver enzymes if I didn't have to go to the hospital once a week for drugs and take drugs every 5 hours (not including supplements) while I am awake. <br />
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I wouldn't have to make sure that there is always mestinon in a bottle that my kids can open and place under my tongue if I can't breathe. And I wouldn't always have to be sure that there is red wine on hand to help me in a crisis. Yes. That is my reality. Red wine, mestinon, the hospital and a normal life. What the heck does that mean? <br />
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Tonight it means that my kids know that I love them and that I put them to bed. It means that I am going back for more drugs tomorrow that might make me feel a bit crazy, but will hopefully make me not have to think about revisiting chemo for a fourth time. <br />
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I will always keep fighting. 16+ years. Good days and bad days. I will win this fight. You just watch me. clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-84266900011449810322011-03-24T13:50:00.000-05:002011-03-24T13:50:12.849-05:00The Sun Will Come OutHi everyone! Thank you all for continuing to think of and pray for me and my family. I know that many of you have been wondering why I haven't written here more often, and I wanted to let you know how much I appreciate the encouragment (both in my health and my writing!).<br />
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I have been writing just about everyday on my new blog at <a href="http://blog.rememberedvoices.com/">http://blog.rememberedvoices.com/</a> I would love to invite you and anyone you think might be interested to join me at the new address. <br />
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I do plan on continuing to write here, but I haven't had the time or energy to dedicate to truly do the subject of living with MG justice. In the next few days I am going to sit down to review the roller coaster of treatments, good days, bad days and great days. My local neurologist is consulting with the guru down in Boston to decide how we should proceed as I have been getting more and more and higher and higher doses of steroids that aren't holding the symptoms at bay for more than a day or two. <br />
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It is always an emotional challenge to review the days spent in treatment, but it will be well worth it if we can update my treatment plan and hopefully reduce some of the meds. I'll keep you posted- and as always, thank you for your thoughts and prayers, and please feel free to share my blogs with anyone you think might be interested or who might benefit from my story!!! clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-28442252625396415902011-02-09T21:02:00.000-05:002011-02-09T21:02:00.277-05:00For Your PrayersI don't know how many people follow this blog. I haven't ever checked into it. I never even really thought about it. I do know that I have been sent random emails from people far and wide checking on how I am doing, and asking why I haven't updated what is going on. Let me start by saying that I am grateful for all the support, and follow that with I am sorry that I don't update more often. <br />
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The thing about Myasthenia (and it kind of makes me mad that I capitalized that) is that our lives aren't our own. We are subject to huge swings of fate. All it takes is <a href="http://blog.rememberedvoices.com/blog/post/Onion-Goggles.aspx">chopping onions</a> and a slip of the knife, a little cut on my finger, to make all the nasty evil antibodies come out and attack not only the possible infection festering in my bloodstream, but also my ability to speak, walk and breathe. What does one do with that? <br />
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How am I doing? I am struggling with this answer. Some days I am fantastic. Most days you would never know what is going on with me. Is that because I worry about upsetting those that I care about, so I put on the best face I possibly can? Do I really hide the symptoms that well? No. Well, maybe. <br />
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I am so much better than I was before chemo. I am so grateful for all that medical science has done for me, and in turn, for my family. One round of chemo was supposed to put me into remission (we hoped and prayed). The second round of chemo was surely going to put me into remission (we hoped, prayed and swore that it would). The third round of chemo should absolutely have obliterated the MG. <br />
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Am I better off than I was? Absolutely. Would I do it all over again? Beyond question. Am I still asking for prayers, despite being able to function far beyond where I was 4 years ago? Yes, please. <br />
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Thank you all for your thoughts, your prayers, and for caring about our family. clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com1tag:blogger.com,1999:blog-3048725589731749794.post-47001253067177971422010-12-16T23:00:00.000-05:002010-12-16T23:00:42.977-05:00Maybe one of my most honest everThis is how it is. The roller coaster of myasthenia... all I can do is love the good (and great!) moments and deal with all the rest. <br />
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My post tonight on the <a href="http://blog.rememberedvoices.com/">Remembered Voices blog</a> really tells about some of the ups and downs on the myasthenia train. <br />
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Thank you for all of your thoughts, prayers and for following my story. My family and friends love me, and God certainly does too. I don't know where I would be without all the support! I'll keep smiling and thinking good thoughts- you do too! <br />
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Merry Christmas!!!!clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-64315951655607298672010-11-16T14:51:00.000-05:002010-11-16T14:51:50.654-05:00Celebration and Concern<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0zpEMn3pe4wu1Ensi6VJPDWH5_WmO1bGIBebBfY18kIaaWxBAS03YH48fjBeZcYGqN5FAMyyvN_595iZGuaUMS4W28_vv_7FoXCuj1UfWNO2BBVaTHB-e6sNM7JDbMLMWF1xQ1Jjvms64/s1600/our+wedding+sideways.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0zpEMn3pe4wu1Ensi6VJPDWH5_WmO1bGIBebBfY18kIaaWxBAS03YH48fjBeZcYGqN5FAMyyvN_595iZGuaUMS4W28_vv_7FoXCuj1UfWNO2BBVaTHB-e6sNM7JDbMLMWF1xQ1Jjvms64/s320/our+wedding+sideways.jpg" width="239" /></a></div><em> November 11, 1995</em> <div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBdQJ0taP8MttmUlciWHuov1EiUMTfoCa3QlX2dsOZy1vmaFPDsuouj3iRkpgy-caRQWuneDVbQTCmWfOMnfv4TSBZ6gkmq5qqyPjp8w2K17FMe1wIiXd6CUJJjZdpOH1RIPymyqCDSP6S/s1600/Anniversary2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div> <br />
<div class="separator" style="clear: both; text-align: center;">I was browsing in a local store the other day when I came across a wooden sign that said, "All this because two people fell in love...." </div><br />
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Jason and I celebrated our 15th wedding anniversary last Thursday!!! We had a wonderful night out in Portsmouth, thanks to my parents, who came down to stay over with the kiddos. (They also had a wonderful night... at Chuck E Cheese!!!) It has been a great 15 years, and it only gets better. I am blessed to be married to such a kind, funny, sweet man. I can't remember a day that has gone by that we haven't been able to make each other laugh. Thanks for being my best friend, Big. <br />
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Today I am sitting here waiting to have fasted long enough to go have my blood drawn. We are checking for all the regular stuff... cholesterol, Vit D, etc. Unfortunately, I also have to have a full liver panel, which has me scared. As many of you might remember, about a year and a half ago, there were concerns about my liver failing- I had a liver biopsy scheduled, but thankfully, as the date drew near, my liver functions went back to almost normal. It was concluded that what looked like a major problem with my liver had been caused by IVIg. Once we stopped that, everything settled down and we were able to stop worrying. I think my mood for the past few days show that I haven't actually stopped worrying. <br />
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The blood work that I am going for today is just for follow-up purposes. I am sure it will all come out fine (I will find out on Thursday). Believing that it will all be okay is all well and good, but there is that awful nagging feeling in the back of my head that is always waiting for something terrible to happen because of all the drugs that we have pumped into my body over the last 16 and a half years. <br />
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It amazes me how much relief I get from just writing about these things. I am so happy to be writing again... I can't believe how much I missed it. If you are interested, I am also writing just about every day about Memories, Motherhood, Military and Medicine (and anything else that comes to mind) at<br />
<a href="http://blog.rememberedvoices.com/">http://blog.rememberedvoices.com/</a><br />
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I am honored that so many loved ones (and some strangers!) care enough to read what I have to say. Again, all my thanks to those of you who follow my progress, pray for me and think good thoughts. God Bless you all. clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-59935820287995477822010-11-04T11:18:00.001-05:002010-11-04T11:20:45.309-05:00Feeling Most Excellent!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRPFn8n51gBoSRueTbwM9PcT1sz57U1vLUwVdvE6vUy13I8mahAyy9uI3ErPH9AEgxRSkj6D-w63I1JvESzZNxOsrYZ1psZp4D04tonxbOO7YPDny0sRG4y5KqPEhRAs7pi9KBVOBZJSXS/s1600/October+2010+024.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRPFn8n51gBoSRueTbwM9PcT1sz57U1vLUwVdvE6vUy13I8mahAyy9uI3ErPH9AEgxRSkj6D-w63I1JvESzZNxOsrYZ1psZp4D04tonxbOO7YPDny0sRG4y5KqPEhRAs7pi9KBVOBZJSXS/s320/October+2010+024.JPG" width="320" /></a></div>My good friend Suzie kept telling me over and over all through the four years of pre-school that once the kids were off to school every day that I would be much better. Turns out she was right! I am going with combination of 3 courses of chemo and now the kids being in school. Regardless of what the reason, I am feeling most excellent (as Bill and Ted would say). At the end of most days, I am slurring, but that is always very quickly resolved with a glass of wine or two :-) <br />
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I haven't been in for steroids for four weeks as of today, and it was five weeks between treatments last time. I am still taking the mestion every five hours and it is pretty clear if I ever miss a dose. LOL I get all slurry and stumble all over the place! Crazy disease that makes me look drunk, and then I get to drink wine and I don't look drunk anymore. <br />
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So I am feeling this well, and that is after throwing a crazy Halloween party with over 30 friends and neighbors and dealing with Katherine, who has strep (poor baby) and having a terrible cold myself. In the past, all it took to throw me into crisis was a cut on my finger. My body would say, "oh... possible infection! Lets make tons and tons of antibodies to kill it!" And off to the ER or infusion center I would go. <br />
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Now I really do kind of feel like superwoman. I am doing just about anything I want to do (but being careful to take care of myself- most of the time- LOL) and for the most part, I feel really good. I did have a blip after going on a hike a few weeks ago- but who isn't tired after a hike? My tired just came out as not being able to talk or walk, oh and a little trouble catching my breath. But I am fine now. Worth it for a day in the mountains with some of the people I love most! <br />
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The big news is that there is a new drug out there for MS and Dr. Logan thinks this would work well for me. It is a steroid, but I can inject it at home... and if it works, I can have my port taken out!!! As of right now, the insurance company has rejected it, but apparently that is always the first outcome with this drug, and we are fighting to get it for me. <br />
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Living with MG has been like living on a roller coaster ride. For me, the key to getting through has been to just live in the moment. Life is full of high highs and sometimes extremely low lows. You can't spend all your time getting stuck in those moments. You just have to endure and make the most of what you have.clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com1tag:blogger.com,1999:blog-3048725589731749794.post-84618156098247973992010-10-07T15:39:00.000-05:002010-10-07T15:39:03.540-05:00Remembered Voices<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOG3C5AY2nCVKDO7b_Knz5zzagFemnfNBxpwu7MDDG4GYXJH6yyg1aTypJEe9x-LR6TIBm4PK7vyVzZI2_m6eLJG-Z2V3W-EX9tRPUEvTwQzqikYqsvNMPLC09f9iypIf9Tk-tkOUQICKQ/s1600/logo_facebook%5B1%5D.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOG3C5AY2nCVKDO7b_Knz5zzagFemnfNBxpwu7MDDG4GYXJH6yyg1aTypJEe9x-LR6TIBm4PK7vyVzZI2_m6eLJG-Z2V3W-EX9tRPUEvTwQzqikYqsvNMPLC09f9iypIf9Tk-tkOUQICKQ/s320/logo_facebook%5B1%5D.jpg" width="315" /></a></div>I went in yesterday for a gram of solumedrol. Not a big deal since it has been almost 5 weeks since I had a treatment!!! That is amazing considering that most of last year and during the summer I was going in about every third or fourth day for steroids as well as being treated with chemotherapy. Not to mention Jason has been deployed to Guam for the past 6 weeks. The strain of being both Mommy and Daddy to the kids would in the past have put me into a crisis, I am sure. I am thanking God, my doctors and all of you for the break in symptoms!!! <br />
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I have also started a new job as a freelance writer, which I am very excited about. As some of you know, I was part of a focus group for a new locally based company. The company is called Remembered Voices and they sell a really cool product called The Voice Library. I got really involved with them after challenging them to provide their service to as many military members as they possibly could. On Memorial Day weekend, they distributed 500 gift cards to soldiers deploying to the Middle East. To my amazement, several newspapers and Fox news sat down and interviewed me! Not at all what I was planning, but an excellent way to get the word out there and to support our troops.<br />
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As I became more and more involved with the company, and they asked me to do some writing for them! I am very pleased to now be part of the Remembered Voices team. One of the things I am working on for them is a daily blog. I would love to share it with all of you and anyone you think might be interested. <a href="http://blog.rememberedvoices.com/">http://blog.rememberedvoices.com/</a> <br />
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I will continue to write here about my family and my health :-)<br />
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Again, I thank you all for following my blog, for praying for me and my family, and for being such a huge support to us over all these years. clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-66471891272218388202010-09-22T07:40:00.003-05:002010-09-22T08:03:32.937-05:00Update<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Bcq1sG8Vbz5VcCJrh8hKPLL7sT_hcNrxvIYN-8jlJBjKUXAqkwBXdHcXuYcJSHvEXqMJy-F4yPqUh8uZ7IuVqnLQNlvOgovzb0WsD-nkzq6LDQCzJZQ6vga1lRXKb83P-qoQ8JFOd47k/s1600/002.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Bcq1sG8Vbz5VcCJrh8hKPLL7sT_hcNrxvIYN-8jlJBjKUXAqkwBXdHcXuYcJSHvEXqMJy-F4yPqUh8uZ7IuVqnLQNlvOgovzb0WsD-nkzq6LDQCzJZQ6vga1lRXKb83P-qoQ8JFOd47k/s320/002.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5519722088083518850" /></a><br /><em>The kiddos with Nannie and GrandDad enjoying the summer in Wolfeboro</em><br /><br />I can't believe how long it has been since I have updated. To all those who follow the blog, I apologize! With the introduction of facebook to my life, I have been sending out blips of information there, but nothing comprehensive like I write here. I have missed writing here so much! Just sitting down today to write was a thrill to me!<br /><br />I read in another blog about MG that people only write about their myasthenia when things aren't going well, so all she could find out there about living with MG was negative. I think that is true to a certain extent- yet there are times when I don't write only because I am overwhelmed by treatments and full-time Mommyhood! So I suppose I don't write when things are very bad and when things are very good. Another example of Claire and her extremes! I either do things 400% or don't do them at all :-) Perhaps we should all pray that I find some way of being more moderate! <br /><br />I know that reading about the details of my treatment is not of interest to some of you, but my fellow myasthenic readers (and perhaps a few others) would probably like to hear the results of the Rituxan that we decided to go forward with. Beginning in April, I had weekly infusions of Rituxan, combined with IVIg and solumedrol. I had a great month in May and then some trouble again in June, so we hit me with more Rituxan and steroids. July was a tough month for me- the humidity kills me- and I needed weekly steroid infusions. I had another dose of Rituxan in August. Since that time, I have only needed solumedrol twice. I am taking Mestinon every 5 hours, and definitely notice if I miss a dose! Regardless, the Rituxan has certainly improved things greatly, and I am thrilled with the results. I am certain that having the kids back in school has also helped with alleviating some of the symptoms. Just not having to be "on" all the time is a great help. <br /><br />All that being said, from here on out, I would like to update the blog much more often. Thank you all for continuing to think of and pray for me and for my family. I appreciate all the comments and feedback, particularly from my last post "And so we lie".clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-12489861856138097282010-01-28T22:04:00.003-05:002010-01-28T22:50:21.853-05:00And so we lie.***** Tonight I wrote from the heart. It might be difficult to hear, but it is the truth. We are great, because we have each other. This is the real deal, this is why I haven't kept up with the blog. We thank each and everyone of you for reading, for praying and for thinking of us. We are so blessed.*****<br /><br />It is impossible for anyone to really, truly know what is going on in someone Else's home. In their lives. Who are you inside? Don't you even question that yourself at times? Don't we all? I would like to think that one of the reasons that we question ourselves is that we would all like to be better people. We would all like to be those that are the best in us. We would all hope to be all that God intended for us to be. Striving to be better, striving to be stronger, striving to be all that God intended for us to be, that is why we are here. This is my belief. <br /><br />When people ask me, when people ask Jason, how are you, how is Claire? We inevitably respond, I am fine, she is fine, we are fine. I know I have touched on this before. I have gone around and around in my mind about how to continue this blog. Do I tell the truth? I NEVER want to sound like a complainer. Guess what- as hard as myasthenia is to live with, there are millions of people out there who have to live with things a million times more intense. Having a sick child. Losing a child. Getting a life-threatening diagnosis. Managing an ill parent. Losing your job. Going through a horrible divorce. Losing your life savings. Losing your home. Having no family to support you during hard times.<br /><br />So how do I, how do we, tell the truth when people ask without sounding "oh poor us, oh poor Claire, oh our poor children"? We function. We get through. You know why? We lie. We lie to all of you. We lie to ourselves. We lie to our children. Maybe in reality it isn't lying. I would love to believe it is insanely positive thinking. That Jason knows one day I will be well because I believe that one day I will be well. Coming up on 15 years since my diagnosis, and since I have been tied to hospitals or medications in some way, I am thinking, really?, am I ever going to be well? There is no alternative... I am planning on being well. I am planning on one day saying to my parents, "yup, we will see you out in Colorado for 10 days, and get the kids signed up for ski school because Jason and I will be skiing our ASSES off on the hill with you guys!!!" <br /><br />My most recent drug regimen is not all that intense. It would be great if it were predictable and I could just take the drugs and be fine. I know all the list of meds I take can get daunting and isn't all that interesting to most of you, so I will give a brief synopsis: I am back on a drug (CellCept) that I took a few years ago with limited success. We thought it might be more effective after the 2 years of chemo. I am also going to the hospital once every two weeks (which is really turning into being once a week or a bit earlier) for steroid infusions. Last week I went in for a big steroid (solumedrol) boost on Friday. It barely held me for 3 days and I held on a bit longer (because I am stubborn as heck) to go in today for another big steroid boost. My fantastic nurses, my neurologist and I decided to go back to the IVIg tomorrow to try to get ahead of the symptoms. God bless the people who take care of me, because I am really a huge part of the decisions we make about how to treat this insane disease.<br /><br />After tomorrow, Jason and I are going to meet with my local neurologist to again make future plans concerning my treatment. I am leaning towards Retuxan... if anyone knows anything about it, please fill me in. It is a drug used to treat lymphoma and Rhumatoid Arthritis. It has been used for MG, but there is limited information about it, because very few myasthenics are in the situation I have been in for the last few years. <br /><br />Some of you have heard this- Lies stop here- My life is awesome in so many ways. I am so blessed. I have a wonderful husband, two fantastic kids, the most loving family and friends and insanely great neighbors! The only thing that sucks is living with myasthenia. I wish it weren't here. I wish we could control it. At times it is who I am- but I am the one who chooses define myself. My definition of myself is not a myasthenic, rather a person who battles and wins over myasthenia.clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com10tag:blogger.com,1999:blog-3048725589731749794.post-78359441640299139752009-12-22T06:50:00.003-05:002009-12-22T16:17:22.894-05:00Merry Christmas<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkCYosiuWky6R9z5Q40_aw0aEPxAJzIndWC1MgadHqEMpfUNnRuBomjnjDUFNblL_uYGIwVZf3lpABmUa8x8HJQ83f8cG0fp4T7w9UM8mj6O1TC_WydDYv_vlsMk0wyxgcxG3p7Z5FBTvu/s1600-h/December+2009+084.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkCYosiuWky6R9z5Q40_aw0aEPxAJzIndWC1MgadHqEMpfUNnRuBomjnjDUFNblL_uYGIwVZf3lpABmUa8x8HJQ83f8cG0fp4T7w9UM8mj6O1TC_WydDYv_vlsMk0wyxgcxG3p7Z5FBTvu/s320/December+2009+084.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5418172472762547986" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4l37_Yi3zdwTzDFgsLc5BubTMfsP72bbqetizrF0q-hufKTm1kxDTjFZIY7KGdaVqF5DIYZWsygdnShcCFe-ogoIMkRDCzsm2KJV5Dar_6NL1_pAH6y9jIPbL7ZedB-6vdFm8jXtMkar0/s1600-h/December+2009+078.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4l37_Yi3zdwTzDFgsLc5BubTMfsP72bbqetizrF0q-hufKTm1kxDTjFZIY7KGdaVqF5DIYZWsygdnShcCFe-ogoIMkRDCzsm2KJV5Dar_6NL1_pAH6y9jIPbL7ZedB-6vdFm8jXtMkar0/s320/December+2009+078.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5418172468416729154" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK06v9ZfbU_D1kq0VdU4rB80eYGwfFJ3Xg_sHqJy8cCDqw6eiji5TZoRwYV9CpRHdp53_mifA3DjKvtK_VC0Ae5RlM0MhOwsC8Gm0FnHCzccMISxoXyL8FtjIJnBenLITv7SR2DPfvwnIr/s1600-h/December+2009+064.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 226px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK06v9ZfbU_D1kq0VdU4rB80eYGwfFJ3Xg_sHqJy8cCDqw6eiji5TZoRwYV9CpRHdp53_mifA3DjKvtK_VC0Ae5RlM0MhOwsC8Gm0FnHCzccMISxoXyL8FtjIJnBenLITv7SR2DPfvwnIr/s320/December+2009+064.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5418172459680603570" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhehbIIN_t7pNOBlhM7kdzDDeBmN1S1ispUvAMZ4J9pwJCsnAlAVgUPelVhVQIcizwEOGsQ0utMHpz_F6mZYYZSeLP1NAB-pCT7wBpVw6KNS4Vk0NGY5EtdjHSGwYHub0I4d22dVingYdyB/s1600-h/December+2009+056.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhehbIIN_t7pNOBlhM7kdzDDeBmN1S1ispUvAMZ4J9pwJCsnAlAVgUPelVhVQIcizwEOGsQ0utMHpz_F6mZYYZSeLP1NAB-pCT7wBpVw6KNS4Vk0NGY5EtdjHSGwYHub0I4d22dVingYdyB/s320/December+2009+056.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5418172455013363698" /></a><br />During this holiday season, I love to reflect on what the past year has brought to our wonderful family. We are blessed in so many ways. Certainly there are bumps in our road, but that is just who we are. Somehow I usually manage to be a strong optimist. My theory is that the glass just HAS to be half full. The only way something can be half empty is if it was once full and someone forced it to change. If the glass had lip marks or lines from the liquid, that would mean that someone had changed the liquid in that glass. It is my goal to not let anyone, anything, including myself, change my state of being to a half empty kind of person. Being happy isn't just something that happens. Sometimes we have to make it happen. Life is all how you look at it. <br /><br />Thankfully I am surrounded by wonderful family members, awesome neighbors, and fabulous friends. What more could I ask for? Certainly it would be great to be in remission. That being said, I am probably the best I have been in 5 years or so. I am still taking Cell-cept (an immunosuppressant) 2 times a day, Mestion 3 times a day, and I go to the hospital just about every 2 weeks for solumedrol (IV steroids). We keep trying to get me off the steroids, but so far not much success. Anytime there is anything "extra" in my life, all the symptoms come back. Being a mommy, wife, friend, sister, daughter- human being- pretty much means there is always some thing "extra" going on! So would I change my life? Absolutely not. I would love to modify the MG- but still, it is part of who I am. It is getting much easier to manage it, and I am so glad we did the 2 years of chemo. I am absolutely certain that those poisons changed something in me- made the MG so much more controlled. I continue to pray that I will improve and live my life without meds and trips to the hospital all the time. Our doctors and nurses are some of the most wonderful people I have ever met. I don't know how I would be continuing on without all the love and support that I feel. I thank each and everyone of you for all your love, support and most especially your prayers. God is listening. I don't know what He has in store for me, but with His love, and all the incredible people in my life, I know we can handle it.<br /><br />So I have decided to be a little forgiving of myself this year and not send out Christmas cards. Sometimes being SuperMom takes too much time! We have so enjoyed seeing all the cards come in! Thank you everyone! Next year I will get on it earlier so it doesn't stress me out :) This is the season I think people are the most strained, and I don't want to join in that. The kids are having a great Christmas season. We have had so much fun with decorating, shopping, wrapping! My parents got the kids this awesome advent calendar with little books that come out each day telling the story of the trip to Bethlehem and Christ's birth. Each book is then hung on a little tree we have set out. It is such a joy to see them anticipating the biggest birthday party in the world! Of course they are wicked excited about Santa coming, too!!!<br /><br />So a quick recap of our year:<br /><br />Maggie, our wonderful pug, recovered beautifully from her knee surgery. She has even lost a pound and a half. The vet, Jason and I consider this quite an accomplishment, considering she spends her summer days laying in the sun, and her winder days laying in front of the wood stove.<br /><br />Penny, our geriatric cat, has finally discovered the pleasure of being brushed, so the kids are having a ball with that. It has really helped clean up the house, too!<br /><br />Katherine is LOVING first grade. She has had a hard couple of months, swine flu, pink eye, another flu (just in time for Auntie's beautiful Vermont wedding). She is a trooper, though. She has become a great little swimmer and is working on perfecting her butterfly. She is also taking piano lessons. I am thrilled with that- maybe someday I will have my own personal accompanist.<br /><br />Thomas is still having a ball at Acorn school. He also got sick this fall, but he bounced right back. He loves all his friends, and I do too! If he is home alone with me, I have to be barbie all day, and all his stuffed animals come to visit me! <br /><br />Jason was awarded the position of Chief of Training at the squadron, and though it is a lot of work, he is really enjoying it. He can't wait for his "Christmas in April" out on our new boat. It is in storage right now over in Manchester, and although we love the snow, can't wait to go skiing, we are so eager for spring this year!!!!<br /><br />Please during this season take some time from all the pressures of holidays and remember why we celebrate Christmas. Love your family and your friends! God Bless and MERRY CHRISTMAS!!!!!clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com1tag:blogger.com,1999:blog-3048725589731749794.post-17059659061063328602009-09-24T07:45:00.004-05:002009-09-24T08:56:55.607-05:00Really?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuH2eLl0FAbn5pbaala6JE5aW8EIbtO8ZZsb1ADr9BFhsAd-DNJM9BY3QAP9lNWQI5gYRSehMAcoWy7-I5Z1sQ8Vfb6NA18HYw1h7YvC7IEvYNF-LDimkcua2RCmN0-kP3kPD9ZPiSeW9r/s1600-h/!cid_falalalalalalala1928824746.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuH2eLl0FAbn5pbaala6JE5aW8EIbtO8ZZsb1ADr9BFhsAd-DNJM9BY3QAP9lNWQI5gYRSehMAcoWy7-I5Z1sQ8Vfb6NA18HYw1h7YvC7IEvYNF-LDimkcua2RCmN0-kP3kPD9ZPiSeW9r/s320/!cid_falalalalalalala1928824746.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5385032272873766882" /></a> Sassy Mama!!<br /><br />It is amazing to me that I haven't written since May! We weren't all that sure what was happening with my treatments, and I guess I don't like to share about indecision and confusion. It was a bit of a tough summer. I ended up having to go in for steroids (solumedrol) quite frequently. Thankfully I have wonderful neighbors and family who were able to help me out with the kiddos. Since I am still so dependant on the steroids, we decided to stop the chemo- the thought is that I have probably gotten all the benefit that I am going to get from it, and at this point we are just putting my body through too much. I am glad that I continued with it, since I am so much better than I have been in the last 5 years or so. <br /><br />The great news is that we stopped the IVIg too- and my liver functions went right back to normal! So that is a tremendous relief. There was also a concern about my bladder- the chemo can cause all kinds of bladder problems, including cancer. Isn't that wild? That something they use to treat cancer can cause cancer? So after a fun trip to the urologist, I was cleared of that worry. The cytoxan has thinned out the lining of my bladder and caused bleeding, but that should resolve on it's own now that I am off the chemo. <br /><br />So what is the current plan? I am back on mestinon 3 times a day, and I am going in for steroids as often as I need them. This last round lasted 18 days! That is a new record for me. Over the summer there were a many times where the solumedrol only lasted 3 days. So this is fantastic for me. I am also back on cell-cept, which is a drug that I took about 4 years ago and had some success with. The doctors wanted to put me on another drug, called Retuxan, but I put the bug in their ears that now that the chemo has improved my situation maybe some of the other drugs that weren't cutting it before might just keep my symptoms at bay. It would be so great to not be so tied to the hospital! I love all my nurses and most of my doctors- but I would really prefer to meet them down at Margarita's, rather hanging out with them hooked up to a pump in a sterile room!<br /><br />Through all of this, I am so grateful for wonderful family, friends, great kids and a fantastic husband. Jason and I are doing our best to live our lives in a positive fun way. Like the song says, "someday I hope you get the chance to live like you were dying". It is so important to cherish the things we have and not get stuck on the things we don't have. Thank you to everyone who has been such a support for me and my family. I will make an effort to write more- I promise!!!clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2tag:blogger.com,1999:blog-3048725589731749794.post-54921886989478242772009-05-18T09:55:00.003-05:002009-05-18T16:28:07.046-05:00What is up with Claire?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7M2OtV4m2JPlSY48h98mNREr3Mkb4yYOhcZGCLhXi3OkXJGtRDLeY4UMrwuWy_avHJnpsPato6L5cUFfRyrFVJfKMvl0QO-sXpdFxdz-CIW6B7cW02mn1fuC5bu_APX4ZurJJNCwoFsvQ/s1600-h/Germany09,Matt_back,Gweny09_311.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7M2OtV4m2JPlSY48h98mNREr3Mkb4yYOhcZGCLhXi3OkXJGtRDLeY4UMrwuWy_avHJnpsPato6L5cUFfRyrFVJfKMvl0QO-sXpdFxdz-CIW6B7cW02mn1fuC5bu_APX4ZurJJNCwoFsvQ/s320/Germany09,Matt_back,Gweny09_311.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5337278704443957282" /></a><br />I haven't been myself at all lately. The smile and positive attitude I have always attempted to maintain through all of this has taking a big fat holiday and left me feeling sad, angry and scared a good part of the time. As most of you know, I started what was planned to be a full year of monthly chemo treatments this past February. I went forward as I always have, thinking this time is going to be it, folks! I am going to kick the myasthenia's butt and we will be able to move on with our lives after 14 years of struggling with this damn disease. I had it in my head that this time around the chemo would make me better like it did last time, but that it was going to stick. (Last years' treatments significantly improved things, but I was still totally dependant on the IVIg every 2 weeks)<br /><br />So far, things haven't been going as planned. I am not much better than when we started in February, and I now seem to be resistant to the IVIg- so I am getting steroid infusions once a week to keep me going. After each solumedrol treatment, I am a different person and can just about pretend I am not dealing with MG. That only lasts a few days, though, and sometimes not even that. Frustrating as hell, let me tell you. On top of all this, there seems to be some kind of complication with my liver, so I have to go in and have that biopsied in June. <br /><br />I know the title of this blog is my story of LIVING with MG- sometimes it doesn't feel like living at all! It is constant doctors appointments, treatments, worry and the ever present ebb and flow of symptoms. For the first time I felt like I couldn't get out from under all this. I have had moments like this, but this feels like it has been weeks. My awesome friends have all stood by me and listened, and helped with the kids and meals. The other night I had this light bulb moment when I thought, hummm, I wonder if I am feeling so down because of the steroids? I mean, anyone would be down with all that is going on combined with the concern about my Mom's accident (she is recovering nicely- slower than she would like- but very well) and managing for 6 weeks while Jason was deployed. Regardless, it just isn't like me to get into a rut and not be able to get out of it. I haven't even wanted to write, because I felt like it would just be complaining. Over the years when the steroids took over my brain, I have lost some people who were very dear to me because I was so not myself. I become obsessive and worried and angry. Hopefully now that I am aware that this might be a big contributor to how I have been feeling/acting I will be able to manage it better.<br /><br />I was prepared for Jason to go away. I was prepared for a year more of chemo. I was prepared for all kinds of things. Life just got in the way. We have to keep doing the things that make us "like everyone else" or things will just get worse. I can't stand feeling like a sick person all the time. Or having people judge our decisions and my treatment plans. I get that much of it comes from concern, but again... frustrating as hell. See, I need to do some of the things that other people do. I need to act normal because it is the only thing that seems to keep me from falling into the pit of "sick person". And when I have acted just like everyone else and I end up with symptoms, we deal with that. We can't have our children, Jason's job or my sanity become casualties of myasthenia. I won't allow it. <br /><br />All in all, I am DAMN proud of all that we have accomplished. I am proud of Jason in all that he does, and extremely proud that he serves our country so honorably. I am bursting with pride over my children and how sweet and good they are (almost all the time! HA). I have wonderful parents, in-laws, and friends. God has blessed me in so many ways. The MG is just part of who I am. Sometimes it is a bigger part than other times. One day it will stop being the central story and become part of my history. It has shaped who I am, driven me to become a better person, and hopefully helped me to inspire a few people along the way.<br /><br />Tomorrow (Tuesday) I go in for another dose of cytoxan. That combined with the steroid they will give me (decadron) should kick me back into gear. Thank you all for caring, for reading and most of all for loving me. Please send me some of that love tomorrow around 1pm if you can. I am always wrapped in my blue prayer shawl and sit in my green treatment chair picturing myself healthy and strong.clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2tag:blogger.com,1999:blog-3048725589731749794.post-57222090333747738642009-04-13T20:33:00.002-05:002009-04-13T20:37:54.013-05:00Please and Thank YouHi Everyone. <br /><br />I am terribly sorry that I haven't written in so long. Life has been awfully busy for the Denton family lately. I only have a minute and am writing to ask for your prayers and good thoughts for me tomorrow. I am going in for another cytoxan treatment (chemo). <br /><br />Please think good thoughts and envision me wrapped in a blue blanket of health and happiness starting at 9am tomorrow. <br /><br />I am going to try very hard to further update everyone very soon, but as I said, things have been very busy, and I hate to be a downer. I would prefer to write more when my smile and positive energy has boosted me back up. <br /><br />Thank you all for all of your support and love. Claireclairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com1tag:blogger.com,1999:blog-3048725589731749794.post-5195255313766357182009-03-04T08:46:00.006-05:002009-03-04T12:10:01.874-05:00Another round<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-OnPjIzuN0rGkHueiQM4iTuiLI6YprpNyV38cnBdeHeya_vR68BBGZirSDEqtlBxZnrivLeQu-F8gnRculqp7KqOJSN663Ih-V8caRTACpABV-74hzJPCK0Vyu4k15TOQmAG9zNbEd4fc/s1600-h/Picture+26.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-OnPjIzuN0rGkHueiQM4iTuiLI6YprpNyV38cnBdeHeya_vR68BBGZirSDEqtlBxZnrivLeQu-F8gnRculqp7KqOJSN663Ih-V8caRTACpABV-74hzJPCK0Vyu4k15TOQmAG9zNbEd4fc/s320/Picture+26.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5309379800015391762" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ugmPlDiWYA6FbnMoICYLWZ54NfseFQ7EvIMtOiH8AccvviZVJSaaA3eJEDvXfiEfO1xh8I0DC874oo0QdKIYfieViaiptPmLJQ4YyilSH4Ar1g3-k7oCNNZW0-DE3nxcON6DQvnw0G0J/s1600-h/394.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7ugmPlDiWYA6FbnMoICYLWZ54NfseFQ7EvIMtOiH8AccvviZVJSaaA3eJEDvXfiEfO1xh8I0DC874oo0QdKIYfieViaiptPmLJQ4YyilSH4Ar1g3-k7oCNNZW0-DE3nxcON6DQvnw0G0J/s320/394.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5309377508445000242" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVSHs75WJVf22U-tF6yDsSxZuA2Og-NqoJLEBnUHEZUhQ-jz8ueDpq4xO586FLCSg6uFZvpXunU645WXIslWWuDXk-zU4_LDnVe9JZ8pGX21BWenufUs-SInwbw4OsxNCsHj0kLl7ply7/s1600-h/369.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVSHs75WJVf22U-tF6yDsSxZuA2Og-NqoJLEBnUHEZUhQ-jz8ueDpq4xO586FLCSg6uFZvpXunU645WXIslWWuDXk-zU4_LDnVe9JZ8pGX21BWenufUs-SInwbw4OsxNCsHj0kLl7ply7/s320/369.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5309377499196098610" /></a><br />How are you? How are you doing? What is going on? I know I ask people these kinds of questions at least 6 times a day. I have gotten to the point where I don't even know how to answer any of these questions. My current response is "it is always better to look marvelous than to feel marvelous"! How about this one, "I vacillate between extreme joy at the wonderful family, home and attitude I have and feeling crushed and disappointed that I have spent a good part of the last 14 years fighting a crazy battle with my own body." Not that I mind the questions. This is a private battle that is very public. Everyone has been so kind and supportive. I don't know how Jason and I would be managing without the wonderful giving natures of our friends, neighbors and family members. <br /><br />I mentioned in my last blog entry that we would likely be starting Cytoxan (chemotherapy) again in the spring unless something drastically changed. Well, apparently I need to update the blog more often. I had my first chemo treatment 2 weeks ago yesterday (second round). The IVIg is only holding me a few days at a time. I have managed to only go in once a week for it, but even that feels like a stretch sometimes. <br /><br />I am set for an IVIg on Friday- we are going to go back to the 60 grams that I used to get before I started chemo the first time. The plan is to give me IVIg every other week and chemo once a month for a year. The last round ended up being a year, but it wasn't always full strength. The first 2 treatments were lower doses because of the mystery of the severe anemia and necessity of all those transfusions. Then I had 6 months of full strength and 2 months off then another dose at full strength. <br /><br />Dr. Gorson down in Boston thinks that we probably just didn't go far enough in the last round of chemo. We didn't kill off enough of my bone marrow to make the change I needed. I last spoke with him a few weeks ago and he was extremely supportive and almost as disappointed as we are in the outcome of the last round of chemo. At the moment, he is running a clinical trial that I would qualify for- it is for treatment refractory myasthenics (no drugs produce long term remission, i.e. ME). We both agreed that this is not the time for me to try it, because you have to be off all meds for 3 months before you can begin and you have to travel to Boston several times a week for 41 weeks. That just isn't realistic for me right now. I have trouble talking, chewing and swallowing just 3 days after infusions. We don't dare to imagine what I would be like after 3 months of no meds! If anyone knows myasthenics who might be interested and eligible, please contact me or Dr. Ken Gorson at St. Elizabeth's in Boston.<br /><br />I am blessed to be surrounded by an insanely helpful and extraordinarily talented medical team. In fact, my local neurologist, Dr. Logan, called me before he went on vacation to give me his cell phone number. Who does that? Incredible. As I mentioned, we have a great support system in our friends and family members. Jason, the kids and I manage to make most moments pretty memorable around here, and the house is still upbeat and cheerful as often as possible. We are doing the best we can with what we have been given.<br /><br />A special thank you to Kimberly, Suzie, Ellen and Margo for all your love, listening and help with the kids the past few weeks. :)clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2tag:blogger.com,1999:blog-3048725589731749794.post-21911691506143845112009-02-05T14:30:00.005-05:002009-02-05T16:37:01.476-05:00Been A While....<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmZJ6Qxl2kwsbuIq4SVdk2MnaWEx-7HXUYdGD2PLWj-2ZcAL_8oYpeoBnqvmL4vEHig-lA6qCq_OJAhTOGUwNqm1sf5jojxOeoWrdB1CE3mFDFHQq2rxsYcvQsU2rVIGJcsb_8zSuN-r4Q/s1600-h/January+2009+(83).jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmZJ6Qxl2kwsbuIq4SVdk2MnaWEx-7HXUYdGD2PLWj-2ZcAL_8oYpeoBnqvmL4vEHig-lA6qCq_OJAhTOGUwNqm1sf5jojxOeoWrdB1CE3mFDFHQq2rxsYcvQsU2rVIGJcsb_8zSuN-r4Q/s320/January+2009+(83).jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5299429393264433858" /></a><br />Kate and Tom ski at the Powderhouse!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj76N-w7Tj0VVQZB8qE1YmaBfCmpqz9YEbVFjIJlwI8lEfKw-jEN0ljV3R8YJ2DE_8-BqC-kuS2S1TU3uvidCoV0f-2cwpVeL8Bbrt24uAb1T11FP0GAai03MSh68B3wjbRnBwsxQiVidi0/s1600-h/January+2009+(40).jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj76N-w7Tj0VVQZB8qE1YmaBfCmpqz9YEbVFjIJlwI8lEfKw-jEN0ljV3R8YJ2DE_8-BqC-kuS2S1TU3uvidCoV0f-2cwpVeL8Bbrt24uAb1T11FP0GAai03MSh68B3wjbRnBwsxQiVidi0/s320/January+2009+(40).jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5299429388414753074" /></a><br />Dude.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBX5IRLCzBW_VuhxsC10XcYSZqZ9dB8jxQY6qPsWQowXlN_mYDwZPEssjzMfBZlnyRb0UUqHIl3yUHYtsN1BO5sysBC2ESyeqE5069Uwz2FbmFBt2-G7WIbJHTohGPxoJvSB1h1mI0c-2d/s1600-h/January+2009+(33).jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBX5IRLCzBW_VuhxsC10XcYSZqZ9dB8jxQY6qPsWQowXlN_mYDwZPEssjzMfBZlnyRb0UUqHIl3yUHYtsN1BO5sysBC2ESyeqE5069Uwz2FbmFBt2-G7WIbJHTohGPxoJvSB1h1mI0c-2d/s320/January+2009+(33).jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5299429385277600818" /></a><br />Our lovely little lady.<br /><br />Okay, sorry to everyone who has been wondering what is going on in Dentonland. I hope you all had a nice holiday season. Ours was very busy and filled with lots of smiles and happy children.<br /><br />It is time that I sit down and finally write to you all again. At the end of November, things were looking very positive. I was going to the hospital once every other week for 30 grams of IVIg (intravenous immunoglobulin). That is half the dose that I had been getting before the chemo- and back then it wasn't even holding me the 2 weeks. Everyone, including my doctor down in Boston, was thrilled. Although chemo didn't put me into a full remission as we had hoped, I was so vastly improved, that we were, and are, calling it a huge success. <br /><br />Quite honestly, Jason and I were cautiously excited. It is hard to completely believe that all is well when you have been through as many ups and downs as we have with this disease. The idea of continuing chemo for a few more months was kicked around, but we decided to let things settle down a bit and give my body a chance to start healing. I find it amusing that the one drug that has helped me the most (cytoxan) is something that I need to heal from! What happens is that the chemo destroys a good part of your bone marrow- which is where the antibodies that were causing the myasthenia come from. Our plan was to kill off enough of my cells that my body would be "tricked" into an infant state and my immune system would then slowly rebuild itself- preferably without the myasthenia gravis.<br /><br />As the holiday season marched on, my immune system seemed to be getting back to normal and all my blood work looked great. The IVIg was still holding me nice and steady. At the end of each 2 week period, however, I definitely felt the need to get in there for my "go juice" as we like to call it. I would start slurring about 4PM on the Saturday before the Monday I was due, and it would slowly progress. The only glitch seemed to happen when I was stressed, overtired or had an infection. If there is someone out there who knows how to avoid those things while raising 2 joyfully active children with a very busy husband please fill me in! heehee <br /><br />The doctors were still very happy, and so were we. Dr. Gorson down in Boston recommended that I try to lower my dose of IVIg to 20 grams or that I try to space them out to every 3 weeks so we could get a baseline for just how improved I am. Dr. Logan, Dr. Gorson and I all agreed on this plan- I was pushing harder for the lowering the dose rather than increasing the duration, but I was willing to try either one as soon as the holidays passed. Due to a change in insurance, I opted for the change in duration and save our family 4 thousand dollars in the process. Unfortunately, things didn't go well, and I really felt lousy there at the end of the 3 weeks. That was in the beginning of January. I feel like I have been playing catch up ever since December. <br /><br />Last week I went in 3 days early. This week I am going in 6 days early. I am praying that this will do the trick and get me back on my every other week schedule. Dr. Logan is blaming the weather. I am not so convinced, but I will happily blame mother nature, just so there is someone to point the finger at. I was feeling pretty down about the whole thing... like how is this happening AGAIN? What we all need to remember is how vastly improved I am compared to how I was. Yes, I am still totally dependant on the IVIg. I am taking the kids skiing, swimming, going to the gym for regular workouts, though! Last year that would have been a crazy thing to even consider. I couldn't even make it through the day without taking a rest- often even needing a nap. <br /><br />So the plan? Hopefully I will get back in my old routine and stay there. Most likely, most definitely, I will be going through another full course of chemo in the spring unless something drastically changes. I could probably push to start now, but that would ruin the ski season plus being bald in the summer way more comfortable than being bald when it is 5 below! LOL Perspective is everything. Jason and I are in good spirits, the kids are all set with our wonderful friends and neighbors helping out when I have treatments, and this is just another bump in the road. <br /><br />Please keep me in your prayers and envision me wrapped in a blue blanket of health and love tomorrow at 10 am. If you would like a template for thinking of me, please refer to the previous blog entry 3/20/08 <em>Chemo Tomorrow</em> Thank you all for your awesome continued support and positive energy!clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-89514522737547744542008-11-15T14:02:00.014-05:002008-11-16T21:58:50.464-05:00A bit of my history<div align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh72mGB2XllQP9LhQGyHv7a4KTFGeUEZYbNsxqByL6bfXX-chV808epz7W0HAwM129YKLTq47jBN9R1KH8OEcGh_OG3Y0vppzlFjTzUSOr7_r7zM4RYp7KxWHhu8jLdWOmdTjuTuorqoWCX/s1600-h/Picture+3.jpg"><img id="BLOGGER_PHOTO_ID_5268997148247764802" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh72mGB2XllQP9LhQGyHv7a4KTFGeUEZYbNsxqByL6bfXX-chV808epz7W0HAwM129YKLTq47jBN9R1KH8OEcGh_OG3Y0vppzlFjTzUSOr7_r7zM4RYp7KxWHhu8jLdWOmdTjuTuorqoWCX/s320/Picture+3.jpg" border="0" /></a> Thanks to chemo Victoria Beckham and I share the same en vogue look.
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<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsbNnGfS1tSTnYCtX_a7hkMxpJpMtgiuwMGw6khyv_w1EI2AxrUeW8f4Kx7MKRws7gwdGJLwUVFn0h7btLhXdkN2_CCZr4fa_J4Nc-2YAoWTP03NfNr2cO9kOlTPsb4pb3oGC9TLpD79_c/s1600-h/Picture+1.jpg"><img id="BLOGGER_PHOTO_ID_5268961943152088066" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsbNnGfS1tSTnYCtX_a7hkMxpJpMtgiuwMGw6khyv_w1EI2AxrUeW8f4Kx7MKRws7gwdGJLwUVFn0h7btLhXdkN2_CCZr4fa_J4Nc-2YAoWTP03NfNr2cO9kOlTPsb4pb3oGC9TLpD79_c/s320/Picture+1.jpg" border="0" /></a>
<br />Our lovable monkees
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<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUWfJjLAbCYWsfXwc_hQxyhJsaZb_UcJGp9VanmnRs4j7JjI7gPbyBv6s3dv1mTyGmVFVdFaHIw559BvFOAz4z4MPQoSacKkjErNEgYC2R1aidr7tYhNT625-dLWMlRrbVgMB2zpt4-wle/s1600-h/november+2008+001.JPG"><img id="BLOGGER_PHOTO_ID_5268995961234916402" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUWfJjLAbCYWsfXwc_hQxyhJsaZb_UcJGp9VanmnRs4j7JjI7gPbyBv6s3dv1mTyGmVFVdFaHIw559BvFOAz4z4MPQoSacKkjErNEgYC2R1aidr7tYhNT625-dLWMlRrbVgMB2zpt4-wle/s320/november+2008+001.JPG" border="0" /></a>Making dough for our Girl Scout Daisy Troop.
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<br /><div align="left">I have spent a good bit of time today reading my past entries. I recently joined a website called facebook, and was able to get in touch with so many old friends! Kimmy and Colleen from high school, Tracy, my maid of honor and college roommate, and Charles!!!, my dear friend from all the way back in kindergarten. What a powerful tool. </div>
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<br /><div align="left">Reconnecting with people I have been so out of touch with for so long gave me reason to reflect, I suppose. So I started thinking, how long have I had this blog? What have I written about? So many friends have commented on our journey, and I appreciated it, but I didn't really think about it until today. You see, we wake up everyday and just go about our business. Both Jason and I, and I suppose our kids following our example, not thinking about how huge Myasthenia is in our lives and how much it has defined us. We try very hard to NOT make MG the focus of our lives, but it still is. I believe it is a lot like having a third very annoying, upsetting, disruptive person in your marriage. Or an evil house guest that won't leave. lol I am not complaining. This is just the way it has been. Thankfully chemo has lessened the burden tremendously. I keep thinking back to how it was last year. I hardly believe we survived.</div>
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<br /><div align="left">I thought this might be a good time to review what the disease is, and what has gone on all these years. My beginning blog entries are very technical, and the more recent ones don't really talk about the MG at all! </div>
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<br /><div align="left"><span style="font-size:180%;">A Bit of History....</span></div>
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<br /><div align="left">In March of 1995 I was diagnosed with myasthenia gravis. It is an auto immune, neuro-muscular disease where, simply put, my immune system has falsely attacked my muscles. Only the voluntary muscles are hit, so the heart still functions just fine. The muscles become easily fatigued because the full "message" that they need to move is not getting across because the receptors are covered by antibodies. </div>
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<br /><div align="left">I was in my second semester senior year at Villanova, engaged to be married, working as a student teacher, volunteering in South Philly, the vice president of glee club, the president of ski club- the list goes on. What I am saying is, I was busy. When I started to lose weight I thought it was just because I didn't have a lot of time to sit down to eat and when I came home from teaching and needed to lay down I just thought I was doing too much. I didn't take the time to consider that I was having a hard time chewing and swallowing or that my muscles actually hurt they were so fatigued. One day I woke up with a sore in my mouth. I trooped off to the dentist thinking it was my wisdom teeth coming in. He gave me a prescription for what turned out to be an ulcer in my mouth. By that evening, my speech was very slurred. Jason and I laughed it off, blaming the meds. I thought my tongue was swollen. I took the weekend to rest and I did feel a little better. I thought it was so weird that when I woke up in the morning I could talk and by the afternoon I could barely get a word out. Plus I was certain that the shortness of breath I was experiencing was due to my tongue being "swollen".</div>
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<br /><div align="left">The following week I returned to my 8th graders with a slightly less smiley smile. I just couldn't get my smile to work! Half way through my first class of the day, my cooperating teacher called me out into the hallway and told me to go down to the teachers lounge and call an ambulance or something- my lips had turned blue and I was gasping for air. Of course I tried to shrug it off, but I did go sit down, called Jason and we reluctantly headed to the emergency room. After scaring the crap out of me, the intern sent me off for a CT scan to determine how severe the "stroke" was that he was certain I had suffered. Thankfully I was cleared, and shipped off to see a neurologist the next day. By the time of my appointment, I was quite certain that I didn't need to see a neurologist, but a psychiatrist. What was happening to me was just way too weird. </div>
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<br /><div align="left">March 19th 1995: Within about a minute of meeting me, the Neuro said he thought he knew exactly what was wrong and had me sign a waver to do a test, called a tensilon test, right there in the office. I remember being a little frightened by the waver... all these scary words about heart attack and stroke. Regardless, I really wanted an answer and this would give us a quick one. Dr. Reid had me lay down on the examining table and injected the tensilon into my vein. Within seconds, my heart felt like it was going to beat right out of my chest and dance across the floor and I could TALK. Totally, completely, easily talk. It wore off in 30 seconds or so. Although I was glad to be rid of the heart palpitations, I was devastated that my ability to talk was also gone. The doctor gave me a few minutes to recover and met me in his office where he proceeded to give me the diagnosis that would completely change my life. </div>
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<br /><div align="left">Myasthenia Gravis. He told me all about it, and I took meticulous notes. I was happy. Yes. Well, not happy exactly. Relieved that I didn't need to go check into a psych ward. Relieved that there was a real thing going on- and it had a name. I was given a prescription for Mestinon (first given and easiest drug to take and to tolerate for MG)and I was sent along my way with a follow up appointment in a month or so. I completely believed I was going to be just fine. This might be a minor inconvenience, but with the support of my family, and Jason of course, I would be fine.</div>
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<br /><div align="left">That weekend, Jason and I had our Pre-Cana training to get ready for our wedding. Mestinon in hand we packed up and trotted off to class. Then the itch started. And the hives. And the burning... ohhh it was miserable. Turned out I was allergic to the Mestinon. Frightened and not sure what to do, I called the neuro and was told absolutely not to stop taking the drug, but to take benedryl along with it until I could get back into his office. I was so miserable, even with the benedryl that I had to stop the drug. I returned to Villanova, ready to take on the world. MG or not, I was determined to be fine. Immediately following my diagnosis, my parents started calling around to find the top specialist in the field. We were able to get an appointment at UPenn that very week. Dr. Schotland took one look at me and wouldn't let me leave the hospital. I guess that was the moment I started to realize just how serious this was. Like, really? I am in danger just going back to my dorm to get some pajamas? Oh yes, Claire. You could stop breathing. You are about to end up on a respirator at this very moment. I started to wish I was crazy instead of having this disease. </div>
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<br /><div align="left">After several more tests, they put me on prednisone and signed me up for plasma-exchange. All day long, different med students, interns, residents, nutritionists, speech therapists, occupational therapists- pretty much everyone in the hospital except the cooks in the cafeteria- came to "visit" me. MG is rare, particularly in this extreme form. I did my best to take it all in stride. They were learning from me and I was learning from them. I still have pages and pages of notes on how to deal with living with MG and the benefits and side effects of prednisone. Ahhh prednisone. I could write a book about the lovely effects of that EVIL drug. Instead I now choose to ignore the whole saga of my 14 year on and off relationship with steroids.</div>
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<br /><div align="left">Plasma-exchange on the other hand- now there is a treatment that WORKS. It is a miracle for me. The doctors couldn't believe what happened that first time they hooked me up to the machine. (there is a previous entry on pheresis- it explains it all and even has a picture of me hooked up- <em>sunday, april 27, 2007 Hurray for my arms!!</em>). Midway through the treatment, my speech started to clear up. I felt a million times better. Not perfect, or even close, but so much better. Dr. Schotland, who is famous for his treatments of MG, and was most definitely not a young man, came flying to my room to see this insanely fast turn around. The positive effects didn't last very long, maybe an hour or two, but they served to invigorate me. I now knew, without a doubt that I was going to make it through this, and I had a treatment that would keep me healthy. The docs at HUP removed my thymus gland (involved in the development of your immune system, but should shrivel to nothing in early childhood) and told me I was eventually going to get it all worked out and find a treatment that would work long term for me. I had no idea that would take this long, but... </div>
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<br /><div align="left">The story goes on from there... plasma exchange is not a long term solution. It is something that works when a patient is in crisis, holds it's own risks and isn't all that convenient. 5 exchanges remove approximately 90% of the antibodies causing the symptoms. Being as special as I am, I respond very quickly during the first 2 exchanges, and then my body seems to "make up time" and goes even more haywire than it was to begin with, so I do very well with 7 exchanges, rather than 5. Given that the pheresis can only happen every other day (because they take out good stuff along with the bad stuff), I spend at least 14 days in treatment to get about 3 and a half weeks of feeling good before the antibodies start to take over again. So plasma exchange was out for a long term answer, but is great for me in a crisis.</div>
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<br /><div align="left">So the different drug therapies began to be discussed. I've been through many, many courses of months on steroids getting me well enough to try other drugs that haven't worked. Ephedrine, Imuran, Cell Cept, Cyclosporin, IVIg, the reintroduction of Mestinon... all with some hope, only to have our dream of me being healthy destroyed, or delayed (?) again and again. Ask my family, ask my true friends. I have felt sad and angry at times. I have NEVER EVER stopped believing that this drug, this treatment, this positive thinking and energy flowing through my body is going to make me well. </div>
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<br /><div align="left">We tried everything there was. Many of them several times. Last year we finally got to the point where there was no other choice but to completely destroy my immune system and start over. An immune system overhaul. A rebooting of my system. So we tried chemotherapy. Every single treatment I have tried, I have believed would be the answer. This time I not only believed it, it had to be. We were kind of at the end of the road. If this didn't work, we weren't sure where we would turn, and Jason and I were pretty wiped out from all the years of me being in and out of ICU.</div>
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<br /><div align="left">And here is where my superwoman complex comes in. You see, I need to be well. I need to believe that I can handle anything thrown my way. Not all on my own, of course. Somehow through this, I have a fantastic marriage, 2 insanely cool kids, a great little pug dog and a cat who loves me so much she keeps me awake many nights looking for a hug. Having wonderful family surrounding us and awesome neighbors and friends has made all of our burdens so much easier to carry. All of the positive energy and prayer that you all have shared with us over the years has been one of our greatest blessings, and I am certain that it is one of the biggest reasons I am doing as well as I am right now. Thank you all.</div>
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<br /><div align="left">At the moment, I have completed 8 monthly treatments of Cytoxan. Initially they told me that I would be given a low dose. Turns out I got 2-3 times the dose a lymphoma patient gets. Still, I am amazed. I have at least 2 more years of chemo remaining, but now it is once every 3 months instead of monthly, and next year it will hopefully be once every 4 months. And I have hair!! How cool is that? Head of hair aside, I am infinitely better than I have been. Everything is easier. I still have to go in every other week for 6 hours of IVIg and lots of trips to the hospital for blood tests and check ups. Now when I am feeling good, I am actually doing well! I am swimming again, not resting every day (many days, but not every), and truly taking care of my kids and my husband the way I always imagined I would. I planned on the chemo being a cure. So far it isn't- but we still have a ways to go, and I am thrilled with the results so far and know that we can only get better from here.</div>
<br /></div>clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2tag:blogger.com,1999:blog-3048725589731749794.post-57854934537607635822008-11-02T20:04:00.002-05:002008-11-02T20:24:41.699-05:00Prayers for my MomHi everyone,<br /><br />I know I haven't been great about keeping everyone informed about my health. Let's face it, we all have our own stuff. Our family so appreciates that everyone has kept us in their thoughts and prayers all these years. Tonight I ask everyone to please include my mother in your prayers. She is going in tomorrow morning, Monday, at 7am for eye surgery. I truly believe that your prayers and positive thoughts have helped me come to a place where I can safely be alone and take care of my children. I no longer wonder where I will get the strength to breathe, walk, eat and take care of my family. A huge part of that I attribute to all of you wrapping me in my blue blanket of warmth and love. Please share some of those powerful thoughts with my Mom tomorrow!!!<br /><br />I will write more and post some pictures as soon as possible. Tonight let all your prayers go to my Mommy. Please take the time you have been so generous to give to me and share your heart and your kind thoughts with my mother.<br /><br />All my love to you. Claireclairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-79680890847014996962008-09-26T07:58:00.003-05:002008-09-26T08:36:56.884-05:00Back to the Grind<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwMnLyjrH8Z0AxC5R03UjP8E1UmshDLIeLEpRwdSPXU6p0KR9wq80GwEgNtgBy4jxQxhsWprykfEObYkLyilwqvTkuVcULXakDpCQT9UbhcgYhLTSK2CEKvGlytowtMOmYjoG4TTU-FjW3/s1600-h/September+2008+075.JPG"><img id="BLOGGER_PHOTO_ID_5250323412459783778" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwMnLyjrH8Z0AxC5R03UjP8E1UmshDLIeLEpRwdSPXU6p0KR9wq80GwEgNtgBy4jxQxhsWprykfEObYkLyilwqvTkuVcULXakDpCQT9UbhcgYhLTSK2CEKvGlytowtMOmYjoG4TTU-FjW3/s320/September+2008+075.JPG" border="0" /></a><br /><div>It has come to my attention that I have been neglecting to fill people in on my health, which was the whole purpose of this blog way back when. As I have said before, I just don't really feel like talking about it lately. Since you all have been so wonderful about sending me your thoughts and prayers, I need to let you know what is going on.<br /><br />The chemo has significantly improved my health and our lives. Unfortunately, it wasn't the cure I was hoping for, as I am still going in for IVIg twice a month. The thing is, I am so much better that I am not complaining. For example, Monday morning, I took a bike ride with Thomas on the back of the bike- 5 miles! By that night I knew I needed to get in for treatment. So all week last week I was swimming almost a half a mile every day, and I was good- feeling good, able to be Mommy, cook dinner, do the laundry, be a good wife and keep my general level of insanity low :) Ohhh don't I sound so domesticated? That is pretty funny. Not at all how I would describe myself. Oh well I am pretty sure my life is way more than the textbook description of full time mom (definately a topic for later discussion- like anyone should have a textbook description of what it is to be everything to people other than yourself).<br /><br />So I have a choice. Do I continue to live my life the way I want to- playing with the kids instead of napping, working out, going to the occasional party on a Friday night or a neighborhood happy hour on a Wednesday afternoon- or do I become overly cautious and constantly worried that the symptoms will come back and I will have to go back for more IVIg? Pretty clear choice to me. I am tired of being a sick person. Now since the chemo I don't have to be anymore. People are very fond of telling me not to overdo it. God Bless my parents and Jason.... they get it. They just say how proud they are of how I am doing and how exciting it is that I am swimming again. I am sure they are worried- they love me after all!!! They are just putting the positive out there for me. Everyone has been so supportive and I am so grateful. Please continue to think good thoughts for me and for my family. This disease isn't gone- but I am thrilled to have it not be the center of my life anymore.<br /><br />The current plan: IVIg once every 2 weeks (30 grams- which is half of what I had been getting) and chemo every third month for one year. Chemo will likely continue for a year past that at every fourth month. All subject to change, of course. Life wouldn't be fun if we didn't have surprises. Just kidding.<br /><br />So if you call and I am slurring, please don't be upset. Remember that I am living my life the way I want to now. I am no longer ruled by myasthenia gravis. Six months ago I had to park in the handicapped spots on the days I felt up to going to the store and then I had to go home and take a rest because I was so wiped out. I had to plan when I was going to take a shower to make sure I had enough strength to dry myself off and still be able to make a peanut butter and jelly for the kids. Now my biggest concern is if I swim too hard, will I be slurring later. God has given me a gift- a new lease on life, and the perspective to truly enjoy all that I have and all that I am able to do. </div>clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com1tag:blogger.com,1999:blog-3048725589731749794.post-11775604768101924252008-09-15T09:06:00.006-05:002008-09-17T13:46:05.611-05:00Busy times<div align="center"><em></em><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrdlRGfMiOMxSED1-av-xgU7ZvSCji4vf6eEZOL9S_smhxZ8c5YYs2oNy19jszK-dU3WwcTQBAWtsyDsHi0aHA9ZZMd3QANKewpUjHlp3nntiGzcsJj2C3JNeWCtaI9d_THTJcMciw3pOS/s1600-h/Sept+2008+(3).jpg"><span style="font-family:verdana;"><img id="BLOGGER_PHOTO_ID_5247061465460428866" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrdlRGfMiOMxSED1-av-xgU7ZvSCji4vf6eEZOL9S_smhxZ8c5YYs2oNy19jszK-dU3WwcTQBAWtsyDsHi0aHA9ZZMd3QANKewpUjHlp3nntiGzcsJj2C3JNeWCtaI9d_THTJcMciw3pOS/s320/Sept+2008+(3).jpg" border="0" /></span></a><span style="font-family:verdana;"> <span style="color:#006600;"><em>First Day of School 2008</em></span></span></div><div align="center"><em><span style="font-family:Verdana;color:#006600;"></span></em> </div><span style="color:#006600;"></span><div align="center"><span style="font-family:verdana;"><br /></span></div><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLaQ-San1cjC93tFz3cGwFVkotuxI_ONY48iEnGkR_lxda7K6SN-i0g221kBvRusAxvl6AWIeHNG7urDqSZBWvrQE_Amvxi1wXfmsCmMg2exEguZ_bxtpVmShAVxOf8JssvyqP0dgLc758/s1600-h/Sept+2008+(16).jpg"><span style="font-family:verdana;"><img id="BLOGGER_PHOTO_ID_5247061468491377330" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLaQ-San1cjC93tFz3cGwFVkotuxI_ONY48iEnGkR_lxda7K6SN-i0g221kBvRusAxvl6AWIeHNG7urDqSZBWvrQE_Amvxi1wXfmsCmMg2exEguZ_bxtpVmShAVxOf8JssvyqP0dgLc758/s320/Sept+2008+(16).jpg" border="0" /></span></a><em><span style="font-family:verdana;"> <span style="color:#006600;">Waiting for the bus with Mommy</span></span></em></p><em><span style="color:#006600;"></span></em><p><span style="font-family:verdana;"><br /></span></p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI7aOJdLpMgQEmKUNJtVvN0KezjTX-h92kIVvQ4r9IuMK0lUGiauZB7vn9K2pIPoQtZySQPqRpgUQRos4DxRdTKMq-FJmOJ-c3lvlb7lDN1nlwvHFljpqsTqTJKuRp4q9NVrPrnOzkEt8k/s1600-h/Sept+2008+(23).jpg"><span style="color:#006600;"><span style="font-family:verdana;"><img id="BLOGGER_PHOTO_ID_5247061474694549778" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI7aOJdLpMgQEmKUNJtVvN0KezjTX-h92kIVvQ4r9IuMK0lUGiauZB7vn9K2pIPoQtZySQPqRpgUQRos4DxRdTKMq-FJmOJ-c3lvlb7lDN1nlwvHFljpqsTqTJKuRp4q9NVrPrnOzkEt8k/s320/Sept+2008+(23).jpg" border="0" /></span> <p align="center"></span></a><span style="font-family:verdana;"><em><span style="color:#006600;">Thomas waiting for big sister to come home :-)</span></em></span></p><p align="center"><em><span style="font-family:Verdana;color:#006600;"></span></em> </p><p align="center"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHzmJxZ4d2lis05aHNtyHN4QI3DlWZhZapE3yCSydsx8h-xkTjhORTMvpEI5-Ri2iIY5PV29W9qOKKP-qZ6ZtXrq2viABS_pcTfBh10urD3PmCZ79a7ClWdnX4tP5vFVlQs_HuYEgJcs6Y/s1600-h/Sept+2008+(41).jpg"><span style="font-family:verdana;"><img id="BLOGGER_PHOTO_ID_5247061477841590066" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHzmJxZ4d2lis05aHNtyHN4QI3DlWZhZapE3yCSydsx8h-xkTjhORTMvpEI5-Ri2iIY5PV29W9qOKKP-qZ6ZtXrq2viABS_pcTfBh10urD3PmCZ79a7ClWdnX4tP5vFVlQs_HuYEgJcs6Y/s320/Sept+2008+(41).jpg" border="0" /></span></p><p align="center"></a><span style="font-family:verdana;"> <em><span style="color:#006600;">First Day of Preschool for Thomas!!!</span></em></span></p><p align="center"><span style="font-family:verdana;"> </p></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnaRxIi9Bm-tpCVn4teCQLxcJxF_adeVSvJYJimWNyBiTrdrJZo1iuhiid6wWiBtcAErA6p0jChlKFXMXEleDlKIG4pPql7xmApvjbOL00iW9dXa5Ib5E3EQLCF2lMmDsK_6z6ZQY8pIEu/s1600-h/Sept+2008+(43).jpg"><span style="font-family:verdana;"><img id="BLOGGER_PHOTO_ID_5247061484221844610" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnaRxIi9Bm-tpCVn4teCQLxcJxF_adeVSvJYJimWNyBiTrdrJZo1iuhiid6wWiBtcAErA6p0jChlKFXMXEleDlKIG4pPql7xmApvjbOL00iW9dXa5Ib5E3EQLCF2lMmDsK_6z6ZQY8pIEu/s320/Sept+2008+(43).jpg" border="0" /></span> <p align="center"></a><span style="font-family:verdana;"></span><em><span style="color:#006600;"><span style="font-family:verdana;">We LOVE Acorn School</span>!!!</span></em></p><p align="center"><br /> </p>I can't believe how long I let this blog go without writing. No wonder I keep getting phone calls asking if I am okay. Yes. I am okay. Thank you all again for your thoughts and prayers, and to those of you who have called. I guess I just got tired of writing. Got tired of thinking about the disease, the treatments- if they are working or not. I took the summer to spend with my wonderful kids and husband. Spent precious times in Wolfeboro with my parents, and down on the cape with Jason's parents. We had lots of fun activities going on when I was up to it- which was a lot. Certainly more capable than I have been at anytime in the last 4 years (actually the last 14 years). It is hard to believe that the best I have been is while I am in the middle of chemotherapy. That thought keeps it all in perspective for me.<br /><br /><br /><br /><br /><br /><br /><br />We have really just been enjoying it all. Jason and I don't really talk about the MG much. Not that we ever did. As I have said before, regardless of how things are with my health, we pretty much always have just said, "fine, we are fine. Thank you". In reality, we are fine. We have a great marriage, great kids, great family supporting us and excellent attitudes- if I do say so myself. So the myasthenia is still here with us, but it doesn't rule our lives, and I have spent many long hours making sure it doesn't define who I am. There have been many times when I have felt like that is all I am- a sick person- but I am not that, in fact that is probably the smallest part of who I am. Those have been the hardest times for me. Most of the time I am uber positive. When I am not, I get so mad at myself. But hey, I am human after all. There are just so many good things to think about, why would I dwell on the bad stuff?<br /><br /><br /><br /><br /><br /><br /><br />So to fill everyone in on my health, I did need to go in unexpectedly last week for an unplanned IVIg- but I am not concerned. The previous IVIg was only 30 grams (I had been getting 60g every other week). We were hoping to make it 30 grams once a month, and I made it to 2 and a half weeks. Plus it was a stressful week (happy but stressful) putting our little girl on the bus for the first time and sending little Thomas off to preschool for the first time. So far, this week has been much better. The kids love school, and I have even been able to get back in the gym! I just got home from swimming a half mile- my goal is to make a mile in one hour by next week. Today was half a mile in 25 minutes. I think I can do it!!! No- I know I can do it.<br /><br /><br /><br /><br /><br />Thank you all, as always for all your support. Your prayers are the biggest reason I am doing as well as I have been. I will be eternally grateful for all the kind thoughts.clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-51014305270116525582008-08-24T09:24:00.005-05:002008-08-24T10:29:56.385-05:00Irish Fest by the SeaKatherine and her classmates did a wonderful job in their Irish Festival! Here are some photos of her and her friends.<br /><p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy17CTasLVydgoq5NA10zTiRx6Zlejpt2aC-5w3X8q4tlpYxDr0KoAAg2QNhj-lSWhOErYOKbdEJGDry2eyVA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><p>Thank you Miss Anne, Miss Jessie and Murray Irish Dance Academy! <a href="http://www.murrayirishstep.com/">http://www.murrayirishstep.com/</a></p><p> </p>clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com0tag:blogger.com,1999:blog-3048725589731749794.post-89257972911836916692008-08-14T09:34:00.002-05:002008-08-21T08:52:58.582-05:00Thanks for the prayersThank you all once again for including me and my family in your thoughts and prayers. I had chemo on Friday, and it went as well as I could have asked for. I was a little down going into it, to be quite honest. Having had a little set back and needing to go in for an unplanned IVIg was a real downer. It is all a matter of perspective, though, and I just had to take a second to think about what kind of shape I would have been in last year if the same circumstances had occurred. I don't need to go into what happened. Really it was no big deal, other than being a blow to my spirit.<br /><br /><br /><br />Friday morning I got ready to go in to the hospital for my chemo, and I was really feeling like just calling it off. Not that I could or would ever do that. I just didn't even feel like putting on my superman shirt and going in for yet another treatment and I had a few doubts that it was even going to do anything other than make me sick for days. I even mentioned to Jason in the morning that I was having a hard time facing the chemo. Most of you know me and know that I rarely get in a zone like this where I am not telling everyone, "oh, don't worry, I will be fine". I have been in ICU telling people not to worry about me that I am fine. LOL And the thing is, I always truly believe that I am going to be/ am getting well.<br /><br />At just about 11:10, I suddenly started feeling my normal positive self. I believe that all your good thoughts hit me right about the same time. On top of all that, my wonderful husband showed up half way through with a big bouquet of daisies for me. Does it get better than that?clairehttp://www.blogger.com/profile/06330978387634461993noreply@blogger.com2