tag:blogger.com,1999:blog-163819282024-03-07T14:03:23.384-05:00A Journey to Somewhere...Everyone needs an outlet to express themselves. So, this is my little corner of the world where I can write about anything and everything. It might not all be roses and sunshine, but it's all truthful and from my heart.Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.comBlogger80125tag:blogger.com,1999:blog-16381928.post-69441113829651420252012-04-09T10:53:00.000-05:002012-04-09T10:54:08.552-05:00Communication is King<span style="font-family: Verdana, sans-serif;">I feel like the title of this post says a lot. Communication - and I mean GOOD communication - is so <b>amazing</b> and just makes such a huge difference for...<i>everything</i>. But let me back up a little bit and explain why I feel like shouting this from the rooftops of...well, let's just say I don't live in a city so I wouldn't be shouting from particularly tall rooftops but that doesn't mean I'm less emphatic about this.</span><br />
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<span style="font-family: Verdana, sans-serif;">Back when I last posted here, about two and a half weeks ago (yes, I pulled out a calendar and actually figured out how long it had been) I was in a particularly bad place. My post was about being in that place where I just didn't feel like I could keep pushing through and, sure enough, shortly after writing it I had a little breakdown/meltdown and ended up crying on the phone with Eric for a little while. That helped me feel a little better - just feeling that connection to him and knowing that we were in this together and we would figure it all out - so I wiped away my tears and headed off to see my adorable niece and sister-in-law which helped to further cheer me up. But that doesn't mean that things were all hunky dory (seriously? who uses that term?). I was still feeling totally stressed, still had a looming announcement to make at work (which is my church) that I'll be leaving in June at the end of the church year, and there was a lot of stress going on between Eric and I. But at least for right then I was feeling a little better.</span><br />
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<span style="font-family: Verdana, sans-serif;">So, over the next (referring back to my calendar) week things continued to be stressful. I was crazy busy with work stuff getting ready for the service that I'm in charge of (SO glad that's only once a year) and things between Eric and I were continuing to be difficult. We were just struggling to <i>talk</i> and be able to really <i>hear</i> each other. We were really trying, I truly believe that, but we are both very stubborn by nature and we had taken opposite stances on the subject of how to handle the condo/mortgage. We just weren't willing to budge, partially just because we didn't want to give in to the other person and neither of us react well to having someone butt heads with us or try to force us to change our minds.
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<span style="font-family: Verdana, sans-serif;">But then things all of a sudden changed. This is going to be tricky to explain but Eric gave up trying to convince me that his side was the right side and just figured out how he would be okay with going along with what I wanted to do. And what he would need to do in order to be comfortable with my choice was something that would result in us spending less time together which made me really sad and ultimately made me give up clinging to my side. So all of a sudden we had each let go of the thing we had been clinging to for <b>months</b> and we were finally able to <b>talk</b>. It was crazy and amazing!
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<span style="font-family: Verdana, sans-serif;">And then something else amazing happened - a few days later we had a second Realtor come to give us another opinion on selling it and we got a hugely different number from him on what we could sell the condo for. A number so much better and closer to what I thought it should be based on research I had done. And all of a sudden we had this new door open to us!
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<span style="font-family: Verdana, sans-serif;">And then something else amazing happened - <b>we kept communicating!</b> We have continued to talk about all kinds of things. There was something really bothering me for a little while and I wasn't sure how to bring it up with Eric so I used a technique he suggested and I wrote him a letter about it. It was <b>fantastic!</b> I was able to sit down and really think through what I wanted to say, read it over multiple times to make sure I really got my message across without being angry or mean, and sent it to him while he was at work so he would have time to read it and process it before coming home to talk it through. And we talked about it and we have kept talking! It's kind of crazy to feel like this but it's so freeing to feel like we can just <b>TALK</b>!
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<span style="font-family: Verdana, sans-serif;">So, if I didn't think communication was important before, I definitely think it is now. Things are changing so much for the better and I'm so thrilled about it! Right about now I feel like we can tackle all kinds of things (but at the same time I don't really want any more problems for at least a little while!). Who knew!?!
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<span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;">Yours,</span><br />
<span style="font-family: Verdana, sans-serif;">Penguini</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9bqLCMH6pqYMuPmVVwFuPwF-KrJQnx39YuCLrHLw7dRbl2VWaDNaMIAZ1uPO2thyWVAgpQG1vmLLwP4AuJGQ8fJ97dgpX2MoIWsT5G0KYm6XJ120ZvtOZ9N4FTUEGZCfzAE4u/s1600/cool+penguin.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="76" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9bqLCMH6pqYMuPmVVwFuPwF-KrJQnx39YuCLrHLw7dRbl2VWaDNaMIAZ1uPO2thyWVAgpQG1vmLLwP4AuJGQ8fJ97dgpX2MoIWsT5G0KYm6XJ120ZvtOZ9N4FTUEGZCfzAE4u/s320/cool+penguin.gif" width="90" /></a></div>Penguinihttp://www.blogger.com/profile/11207621919045365370noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-56085124684175784482012-03-23T08:40:00.004-05:002012-03-23T09:13:24.265-05:00Music for the SpiritI haven't posted anything there in a while. Actually, I just looked and it hasn't quite been 2 months. I would have sworn it had been much longer. I guess it's just that so much has happened during the past few months, the biggest of which was my wedding. I'm married now! Kind of a big thing.<br /><br />But that's not what I'm here to write about. That's not what drew me here this morning with such a strong pull that I couldn't really ignore it. I have all of these things swirling around me but all<br /> I can do right now is sit here and write because I just cannot deal with any more of the crap going on in my life. I haven't even been home from my honeymoon for two weeks and already I have been dealing with so much stress and turmoil that I'm surprised I'm not currently curled up in bed. But no, I'm still getting up each day and semi-functioning.<br /><br />There's the work stuff...that I can't really talk about here right now (next week I'll be able to talk about a little more of it). But that has taken up a huge amount of my energy, time, and ability to cope.<br /><br />And then there's the...I don't know quite how to categorize it because it spills into so many categories. It's relationship/marriage stuff but it's also financial stuff but it's also communication<div> stuff (which could just be lumped into the relationship/marriage stuff). There's a lot to struggle through, to be frustrated with.<br /><br />This morning I have been listening to music on spotify (as I do everyday) and the song that is resonating really strongly is "Keep Breathing" by Ingrid Michaelson. There are actually a few of her songs that resonate with me during this time, but that one especially.<br /><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/fORAPkfVV_A" frameborder="0" allowfullscreen=""></iframe></div><div><u><br /></u></div><div><u>"Keep Breathing"</u></div><div>By Ingrid Michaelson<br /><br /><i>The storm is coming but I don't mind<br />People are dying, I close my blinds<br /><br />All that I know is I'm breathing now<br /><br />I want to change the world<br />Instead I sleep<br />I want to believe in more than you and me<br /><br />But all that I know is I'm breathing<br />All I can do is keep breathing<br />All we can do is keep breathing now<br /><br />All that I know is I'm breathing<br />All I can do is keep breathing.<br />All we can do is keep breathing<br /></i><i>All we can do is keep breathing<br />All we can do is keep breathing<br />All we can do is keep breathing<br />All we can do is keep breathing<br />All we can do is keep breathing now</i><br /><br />And one of the most powerful songs about struggling is by an amazing, brave Lyme friend, Alisa Turner. The song is called "Breathing" (interesting how focusing on breathing becomes a theme during times of struggle).<br /><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/GLsKzxOvVXk" frameborder="0" allowfullscreen=""></iframe><br /><u><br /></u></div><div><u>"Breathing"</u></div><div>By Alisa Turner<br /><br /><i>It is dying to come out<br />It is killing me within<br />Someone check if I'm still<br /><br />Breathing<br />Just keep me breathing<br />Oh now what should I say<br />I wanna to keep it from the heart<br />Well someone check if I'm still<br /><br />Breathing<br />Just keep me breathing<br />See this is why I sing it<br />It's gonna keep me breathing<br /><br />I should've told you from the start of things<br /></i><i>That tonight I'm really suffering<br />And me I hope you're still<br /><br />Believing<br />Don't stop believing<br />Cause if you stop believing<br />Than it will keep me singing<br /><br />I do have thought of suicide<br />I know it's brave of me to say (I know)<br />But am I brave enough<br /><br />To Stay<br />Enough to stay<br />So this is why I'm singing<br />To keep me breathing</i><br /><br />I don't know exactly what I'm trying to say here. I guess just that when things are getting tough, as they are right now - and not even <i>physically</i> tough, but emotionally and spiritually tough - going back to focusing on something fundamental like breathing is helpful. But more important than that - for me, seeking comfort and support and nurturing and renewal through music is important. When I got up this morning feeling totally drained emotionally and mentally an</div><div>d spiritually from everything that's going on, the first thing I wanted to do (and the first thing I <b>did</b>) was to go and turn on the music on my computer.<br /><br />No, the songs I listen to when I'm struggling like this are not always so...for lack of a better word I'll call them sad or melancholy. I listen to other songs to try to lift my spirits like "Rolling in the Deep" by Adele and "Good Life" by OneRepublic and stuff from Glee. But there needs to be a balance.<br /><br />I have no idea if I've gotten what I needed out of this writing. But I know I've run out of time. Now I need to get dressed and head off to see my wonderful almost 10-month-old niece who makes everything better. She is perhaps the best therapy there is.<br /><br />Yours,<br />Penguini<div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr2xb8wSHJi8CEHCNqKEYV76sTtJwAwnmp-ZyKFBBHh7Mc_CqLOz31ShjRBx-A5OY0ugvMIWsrfPdyENiSoNSGKteTIkm-VmrFnDKjqEkPUyqd8lAKK1z4GvGKE9uVqrHAiO0U/s320/Penguin+on+water+edge.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5723094782759272898" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 320px; height: 241px; " /><br /></div></div>Penguinihttp://www.blogger.com/profile/15334026817461383026noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-30685774663419732702012-02-01T14:25:00.004-05:002012-02-01T14:54:02.626-05:00Enjoying the MomentLife is constantly changing. Constantly moving forward whether we want it to or not. Sometimes it feels like it's inching forward, at a snail's pace, with very little happening that matters. But when we look back over weeks, months, years, we realize that it was whizzing by us much faster than we could have imagined.<div><br /></div><div>It seems that we are often either looking back remembering something that has happened - a particularly good thing that makes us feel warm inside or something that has left us scarred, whether physically or emotionally - or looking ahead towards something looming off in the near future. It's hard for us to sit in this moment and look around us at what is happening right now. This moment rarely ever seems like it contains enough and we are often longing for a moment in the distance that we hope will bring us more of what we hope for.</div><div><br /></div><div>Right now I am struggling to remain in the moment even more than usual for a number of reasons. Perhaps the biggest reason is that I am getting closer and closer to one of the biggest life changes I will encounter - getting married. My wedding is 31 days from today, 4 weeks from Saturday, and very quickly approaching. There is so much to do that I feel like I am constantly checking to-do lists, sending e-mails to arrange things, trying to coordinate things with my soon-to-be husband, or talking wedding plans with friends and family when I find time to just hang out with them. There's so much to do that it seems rare that I have a chance to sit and look around me at THIS moment without listening to the constant list of tasks running through my head. And as the wedding date gets closer, my excitement (and nervousness) grows so I kind of can't wait for it to get here. I may be a tad impatient at times and I have a feeling this is going to be one of those times, although I may find myself wishing for an extra few days to get things done when we find ourselves down to the wire.</div><div><br /></div><div>On top of the wedding planning, I am also in the midst of my very familiar medical world where there is always something - an appointment, test, procedure, etc. - looming on the horizon. Sometimes these are things that I dread but right now the few things that are scheduled are things I am looking forward to, at least in some ways. A week from tomorrow I will have a new port-a-cath placed allowing me to finally have the PICC line removed that I've had since I was in the hospital in October with blood clots, requiring my last port to be removed. This port will be my fourth and while I have mixed feelings about needing to have it placed, I'm really looking forward to getting back to my "normal" (if there is such a thing) and not having to deal with the PICC line anymore. While I may not like needing central lines for IV medications, I know what my quality of life is like without them and I'm willing to put up with them to be able to live my life more fully. So I'm counting down to that procedure. </div><div><br /></div><div>And I'm dealing with IV antibiotics that make me quite nauseous which makes it pretty difficult to try to be in the moment. When the current moment sucks, I think it's only natural to look ahead to better moments when things will be better.</div><div><br /></div><div>When you put all of these things together, there's a lot going on. And quite a bit of anxiety starting to rise up. I am finally getting to have the relatively "normal" experience of getting married, but I have fears that my health will prevent me from really enjoying the day. And then of course if I worry about it too much, I may just make myself sicker and shoot myself in the foot. I'm trying to take advice from people who have done this before me and, if possible, not focus so much on the actual wedding day but on the fact that it's going to be the start of our life together. But I can't help wanting to have that day. These illnesses have taken so much from me, so many years, I want to be able to fully enjoy this one special day (and hopefully the week afterwards while we're on our honeymoon). </div><div><br /></div><div>So I'll try to stay as calm as possible and enjoy the process of planning the wedding. I'll try not to put so much into the one day but at the same time do whatever I possibly can to make myself feel as well as possible for that day. If I need to do extra fluids the night before, so be it. If I need to take frequent breaks during the reception to go sit down, I'll do that as long as I get to fully enjoy the rest of the time. If I need to carry around my pill case in a purse all day, that's fine. It's just hard not knowing what to do to make it easier on my body and not being able to predict how I will be feeling on that particular day. Ahh, the joys of chronic illness.</div><div><br /></div><div>Yours,</div><div>Penguini</div><div><br /></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvLtln2DMTaxClc5df1JmZvL10aJNK3kiUC4x82tCoDcujSSiQ4IdKx5kFFpSY6_Rfb7hcyaTa3NWRQh8yb4ReVHQItKG6-ugK_r3Jd7zbO-FQB25orQfg16xLodUYKZlvoMcb/s320/cool+penguin.gif" border="0" alt="" id="BLOGGER_PHOTO_ID_5704257527520818290" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 90px; height: 76px; " /><div><br /></div>Penguinihttp://www.blogger.com/profile/11207621919045365370noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-50848900562341846222011-09-01T15:12:00.004-05:002011-09-01T15:18:47.075-05:00Number 12<div>So far, I haven’t done much along the lines of attacking my “30 Before 30 List”. But this month I’m diving in. And the first thing I’m going after is number 12 - Stop drinking soda for a month (30 days). I’m starting today, September 1st, and the plan is to not drink any soda for the rest of the month at least.</div><div>
<br /></div><div>I also plan to start on number 16 - Get to the point of being able to run at least 1 mile without stopping. My plan is to join a gym next week near where I nanny and start going at least a few times a week to build up my walking/running stamina.</div><div>
<br /></div><div>And I am on my way to completing number 28 - Donate books, clothes, stuffed animals, etc. (SIMPLIFY!). Eric and I have made one trip to Savers with donations and there is another trip in our near future with more stuff.</div><div>
<br /></div><div>So there are three things to start and hopefully accomplish or at least get underway this month. Now to work on planning some of the bigger things, some of the trips that will require a bit more than just deciding I’m going to start it some month or day.</div><div>
<br /></div><div>And as a little bit of an aside, I had a wonderful vacation last month which began with Eric proposing! So I am now engaged and will be occupied with planning a wedding while trying to complete the “30 Before 30 List”. We’re shooting for a late-February wedding which means approximately a 6-month engagement - not a long time to plan a wedding but I’m sure we’ll be able to pull it off. And it’s kind of funny because when I was making up my 30 list, in the back of my head I had this thought to put “Get engaged” down but I didn’t want to put anything down that wasn’t fully under my control. I may still tweak and adjust the list, though. But I’ll probably post updates if/when they are made so I still feel like I’m holding myself accountable in some way to stick to the list.</div><div>
<br /></div><div>So here’s to a good month and starting towards checking things off of the list!</div><div>
<br /></div><div>Yours,</div><div>Penguini</div><div>
<br /></div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW1QNGOrZQOkxA7fOfKl-dpmAOVnwlylRbF5mCX7yATtuHJXOJY8PWXjoIpmp_SQwMw3Cb8wO-6pxYZ_n6Ar6U9BqTl7wAXehdgmnOms7QZl4Y_2jgn6Fzk39QX7-_E0Pvt1uw/s1600/penguin+dancing.bmp" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW1QNGOrZQOkxA7fOfKl-dpmAOVnwlylRbF5mCX7yATtuHJXOJY8PWXjoIpmp_SQwMw3Cb8wO-6pxYZ_n6Ar6U9BqTl7wAXehdgmnOms7QZl4Y_2jgn6Fzk39QX7-_E0Pvt1uw/s320/penguin+dancing.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5647487792789863538" style="float: left; margin-top: 0px; margin-right: 10px; margin-bottom: 10px; margin-left: 0px; cursor: pointer; width: 125px; height: 156px; " /></a></div><div>
<br /></div>Penguinihttp://www.blogger.com/profile/11207621919045365370noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-20964009002548825902011-07-20T09:03:00.002-05:002011-07-20T09:06:38.289-05:00My BeachThis is <i>my</i> beach<br />Early in the morning<br />Quiet<br />Empty<br />Peaceful<br />It's where I find my soul<br />As the waves crash in<br />And slowly ease back out<br />Into the enormity of the ocean<br />Later the beach will change<br />It will get crowded<br />People will run to cool off in the water<br />Dig holes<br />Build castles<br />But for now it's <i>mine</i><br />I let my feet sink into the sand<br />I wiggle my toes<br />And feel the grains rub my skin<br />I smell the salty air<br />Feel the sun shining on my skin<br />I close my eyes<br />And just listen<br />As the waves crash in<br />And recede<br />The heartbeat<br />Of my beachPenguinihttp://www.blogger.com/profile/15334026817461383026noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-66496490304067414162011-07-20T08:46:00.003-05:002011-07-20T09:02:48.113-05:0030 Before 30 ListHello old blog! It's been a while! I never have the intention of going so long without posting anything but life seems to sweep me up and I either find myself with very little free time and energy to sit and write or no inspiration. Or, even worse as far as I'm concerned, I sit down with an actual subject in mind to write about and can't manage to get more than a paragraph written. The words don't always come easily and it's hard to share things that I don't feel satisfied with.<br /><br />But I'm coming here today to share something I've been working on for about a month (or more now). It's my "30 Before 30 List" - a list of 30 things I want or intend to do before I turn 30 which is now less than a year away since my 29th birthday passed by just a few weeks ago. The list is a combination of intentions to focus on getting healthier, places I want to visit, and just general things I want to do in the next year. I wasn't sure if I was going to share the list or not but I think I'll just go ahead and do it. Maybe it will hold me more accountable to actually DO the things I want to do? So here it goes:<br /><br /><u>30 Before 30 List</u><br /><br />1) Visit New York<br />2) See at least one Broadway show (in NY)<br />3) See Niagara Falls<br />4) Spend a whole day at Pemaquid Point (breakfast to sunset)<br />5) Stay overnight on Monhegan Island<br />6) See a live taping of A Prairie Home Companion<br />7) Re-visit the cathedrals in Montreal<br />8) Watch a sunrise (with Eric)<br />9) Spend a weekend/few days alone on a meditative retreat (Kripalu or similar)<br />10) Meditate everyday for a month (30 days)<br />11) Develop a regular yoga routine (at least once per week, at home or at a studio)<br />12) Stop drinking soda for a month (30 days)<br />13) Drink green smoothies for 1 meal a day for a month (30 days)<br />14) Don’t eat refined sugar for a month (30 days)<br />15) Floss everyday for a month (30 days)<br />16) Get to the point of being able to run at least 1 mile without stopping<br />17) Go to bed by 10:00 everyday for a month (30 days)<br />18) Have a successful indoor/container/”apartment” garden (with vegetables and/or herbs)<br />19) Begin writing my health story/autobiography/memoirs<br />20) Write for 15 minutes a day for a month (30 days)<br />21) Watch “Gone with the Wind”<br />22) Watch “Casablanca”<br />23) Knit a pair of socks<br />24) Knit a sweater<br />25) Maintain a savings account of at least $4000<br />26) Re-read “The Alchemist”<br />27) Read "Dr. Zhivago<br />28) Donate books, clothes, stuffed animals, etc. (SIMPLIFY!)<br />29) Apply to volunteer at Camp Sunshine<br />30) Start to learn to play guitar<br /><br />So there it is. I've still been changing things right up until this very second (I just changed something right before I wrote this sentence). So I don't know if it will stay with these 30 things or if I will change something as the year progresses. And I don't know if that's something I <i>should</i> do or if I should stick to these 30 things. But, you know what, it's my 30 Before 30 List so I guess I can do whatever I want with it. Because in the end it matters whether I'm happy with what I've accomplished (or not managed to accomplish).<br /><br />So I guess I better get busy getting things done and making plans for the upcoming year! I think this is going to be a fun year!<br /><br />Yours,<br />Penguini<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3tbPLCQhRv6RBLZZFlOD3u86pQC-vKrJNYmGbRreXVFGh_W0znyyLbBnpzUVuz5kU2OTs5HN3JfwKl4dTr9rlO4ZP6RktNHAi9R5VwTCQKS6W-aFXoqQmTt-TO473j0rJxgK1/s1600/cool+penguin.gif"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 90px; height: 76px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3tbPLCQhRv6RBLZZFlOD3u86pQC-vKrJNYmGbRreXVFGh_W0znyyLbBnpzUVuz5kU2OTs5HN3JfwKl4dTr9rlO4ZP6RktNHAi9R5VwTCQKS6W-aFXoqQmTt-TO473j0rJxgK1/s320/cool+penguin.gif" border="0" alt=""id="BLOGGER_PHOTO_ID_5631434576151712850" /></a>Penguinihttp://www.blogger.com/profile/15334026817461383026noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-39049770302364272532011-01-15T14:56:00.010-05:002011-01-16T12:53:31.926-05:00New Year's CommitmentsSo I seem to have something against New Year's resolutions. It's not so much the <span style="font-style:italic;">idea</span> that I have an issue with, it's that they have become something that people go overboard with and then by the end of January, most (if not all) of them have fallen by the wayside. If they were things that people really committed to, I feel like the concept would hold more weight and I'd be able to take it more seriously. But, like I said, I kind of like the idea of taking the time at the beginning of the year (or really <span style="font-style:italic;">any time</span> one can make a conscious, positive change in their life) to think about what we would like to change about our lives and realistic things we can do to make that change happen. I think sometimes people sabotage their own resolutions by aiming a little too high. They might really <i>wish</i> they could go to the gym five times a week, eat only healthy food, and lose a lot of weight. But when it comes down to the reality of it, life can get in the way. The first week things might go well, but when something comes up during the second or third week and getting to the gym becomes more difficult or picking up a pizza on the way home from work is all you have energy for, it's easy to quickly forget about the resolutions you made or to just decide that they're not worth the effort involved. And we want instant gratification which is an issue I think most, if not all, of us have. So when we haven't seen the results we want after a few weeks or a month, we lose our motivation to keep it up and revert back to our old ways.<br /><br />I'm not by any means saying that everyone is like this, I am sure there are people who make New Years resoultions who stand by them and keep them throughout the year, but that doesn't seem to be the norm. And I want to get away from the idea of only making these life changes at the beginning of the year when they can be made purposefully anytime in the year.<br /><br />So, now that I've gotten all that off my chest, I do have some changes that I would like to make in my life. I will call them committments. So here are my commitments.<br /><br />1) I want to make time to write more often - daily if I can and if not daily then at least 3 or 4 times a week. The writing doesn't need to be anything fancy or that I would share with anyone, but more for myself. I really love writing, it is such a great tool of self expression, and I have not done a very good job of doing it on a regular basis. But I would like to change that. So I'm making a commitment to doing this for myself.<br /><br />2) I want to work on my financial stability and building up my savings. This has been hard for me to do in the past for various reasons but I feel like now is the time when I am finally able to focus on this. I'm not going to put a monetary amount for how much I want to save, but I'm making a commitment to put some money into my savings every month (and leaving it there).<br /><br />3) I want to really take the time to do the things necessary to take care of myself. That seems really broad so I'll break it down into the things that are most important to me right now (and that I feel are most realistic).<br /><br />a) I'm making a commitment to get more sleep on a regular basis. My goal is at least 9 hours most nights (which means going to bed by 9 the nights before I work) and no less than 8 hours.<br /><br />b) I'm making a commitment to taking all my pills and medication and taking them on time (or as close to on time as possible).<br /><br />4) I want to start getting rid of things I don't need or use. This will be a slow process, but I'm making a commitment to taking the first steps and beginning to look around at my apartment with more critical eyes, more willing to admit that I don't actually need or use everything.<br /><br />That's pretty much it for the biggest things I want to focus on. There are other little things I want to do, like being better about watching my Netflix movies and returning them. And spending more time with my cats (which may seem silly to some people but cat people will understand). And in the back of my mind I do have those big ideas that I know would be great for me to do but right now are just too much for me to try to commit to. One step at a time. And when all of these things become second nature, then I'll be able to take on more changes. You can't try to change everything at once or you're just setting yourself up for disaster. And I'm not saying I'll definitely manage with what I'm trying to commit myself to, but it seems to be a somewhat manageable list.<br /><br />I challenge you all to think about your life and come up with just a few things, not enormous things, that you can start to work towards changing. I feel like making huge leaps towards changing things can more often result in falling flat on your face, but if you take smaller steps and do things a little at a time, you can be more likely to actually reach your goal and create a change that will stick. So, what can you commit to?<br /><br />Yours,<br />Penguini<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://data.freelancer.com/logo/1830190/penguin-writing-in-a-notebook.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 136px; height: 170px;" src="http://data.freelancer.com/logo/1830190/penguin-writing-in-a-notebook.jpg" border="0" alt="" /></a>Penguinihttp://www.blogger.com/profile/15334026817461383026noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-61134564754409149832010-12-14T18:50:00.001-05:002010-12-14T18:53:02.704-05:00Thirteen YearsI am approaching the anniversary of my Lyme disease diagnosis. This year it will be thirteen years since that initial diagnosis. And I am struggling with it. Every year as the end of December approaches (I was diagnosed somewhere at the very end of December in 1997, I would have said it was the 28th but apparently that was a Sunday) I think about the number of years since my diagnosis, everything I have been through, etc. And I usually get really frustrated that there doesn’t seem to be a light at the end of the tunnel. After thirteen years of being DIAGNOSED shouldn’t I be BETTER? Better is relative, and I am better than I have been, but I am not “well”. And in order to function, I rely on dozens of medications and supplements as well as daily IV infusions. The medications have been part of this journey for the past thirteen years and I really can’t think of a time when there was truly a break - I mean a break from all medications, not just antibiotics and Lyme treatment. There have always been medications and supplements to take for headaches, nausea, sleep, gastroparesis, etc. And for the past five and a half years, daily IV infusions have been a part of the mix as well.<br /><br />I want to be able to say I’m done with it all. I want to be able to move on with my life and not have to schedule it around medicine and food and fluids. And if it can’t happen now, if I can’t be done with it now, I want to feel like that will happen SOMETIME. There is no way of knowing if or when I will be able to get off of some of these medications, or if there will be a time when I don’t rely on IVs everyday. I don’t want to reach this time of year in 2012 - fifteen years since my diagnosis - and still be stuck where I am now. That year will be the point at which I will have been sick for half of my life. And from that point on, the time scales will be tipped.<br /><br />At this point, I really don’t remember what it was like to live life without chronic illness being a huge part of it. I was fifteen when I got really sick, so yes I do have memories from before I got sick. But not really of the day-to-day life. I don’t remember what it was like to not have to think about the things that are constantly running through my head now and have been for so many years. I have alarms that go off every few hours to remind me to take various medications. I often get woken up in the middle of the night because my IV pump battery has died and I have to replace it. I worry about having enough energy to run errands on bad days and therefore push myself to do too much when I’m having a not-so-bad day. I don’t remember what it’s like to not deal with all of that.<br /><br />I don’t mean to sound all depressed and glum. Things aren’t as bad as they could be. I have been so much sicker than I am now. I am able to work, I am living on my own (with help from my parents), I am in a relationship with a wonderful guy, I am able to do fun things sometimes. But I can’t help but long for a time when I am “well” and don’t have to work so hard to function at the level I’m functioning at right now. My doctor acknowledged at my last appointment that I’m able to do a lot, but I have to work extremely hard to do it and I shouldn’t have to work that hard.<br /><br />When I think about thirteen years and what that looks like, it’s overwhelming. And I can’t help but feel like I won’t ever be “well”. Maybe that’s true, maybe I won’t ever be “well”, maybe this is the best it will be and I will have to work this hard to function for the rest of my life. Maybe I will be on medication and rely on IVs and be afraid of crashing or getting worse. I’m just not ready to accept that. And I don’t know if I ever will.<br /><br />So for now I will push forward, I guess. I’ll get through this month and into the next one. And if that’s too much, I’ll get through this week. And if that seems like a huge mountain to climb, I’ll focus on this day, or this hour, or this minute, and just do what I can do to make it through that. And eventually maybe it will get easier again and I won’t have to work so hard. Or maybe it won’t and I’ll just get better at accepting it.<br /><br />Yours,<br />Penguini<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg135SuYYM-kJtta_E2_IzFYk807_g6eXvk5Pgfg1MX4mnonHcQaBYDFop2DOEcbwT02e4tR4O8Q5v34QODnX1Y4IKSGbGZnVIBeA77kfMLZHRpl77PaDY4wRXMGfTjoOYAcIiQog/s1600/Penguin+on+water+edge.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 241px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg135SuYYM-kJtta_E2_IzFYk807_g6eXvk5Pgfg1MX4mnonHcQaBYDFop2DOEcbwT02e4tR4O8Q5v34QODnX1Y4IKSGbGZnVIBeA77kfMLZHRpl77PaDY4wRXMGfTjoOYAcIiQog/s320/Penguin+on+water+edge.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5550690124087056498" /></a>Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com1tag:blogger.com,1999:blog-16381928.post-50590720889015166322009-07-26T22:40:00.000-05:002009-07-26T22:41:37.563-05:00Am I Kidding Myself?Wow, it has been a <b>really</b> long time since I’ve posted anything on here. I usually have a lot of ideas of things to write but either I forget them before I have a chance to write anything, I start writing and don’t get anywhere, and/or I’m just too tired to type anything. But now I’ve been wanting to write something for a few weeks and actually started writing a couple of times but I only get a few sentences written before I either give up due to fatigue and brain fog or I just don’t know what to write next. It’s also hard for me to write things for this site without having them turn out sounding depressed or negative these days. I’m not sure why that is but I’ll try to explain what’s going on with me which may help to explain more of the lack of blogging. So bear with me as I try to write some of what is on my mind.<br /><br />The topic I have tried writing about a few times in the last few weeks is essentially this: Am I really that much “better” or am I just kidding myself? This has been on my mind a lot as I’ve been thinking about how I’m feeling lately and trying to compare it to how I was feeling a month ago, six months ago, a year ago, five years ago, etc. When I try to do these comparisons, I’m just not sure how much “better” I really am. I’m definitely better in some areas than where I was a year ago when I was having (almost) daily high fevers and just basically getting sicker and sicker which resulted in a 10-day hospitalization in November. But that was from a line infection (in my port-a-cath) and as far as my “normal” health stuff goes, it’s hard to tell where I am compared to a few years ago. And it makes me wonder how much the treatments I’m on are going to do as far as <i>permanent</i> recovery. By permanent I don’t even necessarily mean that it would last forever, but just the kind of recovery or remission that would allow me to stop the treatments and remain stable for longer than a month before going downhill again.<br /><br />I’ve written a lot about the difficulties of dealing with chronic illness for such a long time and the kinds of struggles that go along with it. There’s so much to deal with – the treatments, IVs, pills, doctor’s appointments, spending whole weekends (or longer) in bed resting trying to regain some energy and strength, worrying about what might be going on that hasn’t been identified yet, etc. It’s hard and it wears you down which I think is just to be expected. You can’t deal with all of this and be positive all the time. You’re going to have break-downs, you’re going to be depressed sometimes, you’re going to be angry at the world, you’re going to be mad and frustrated at your body, and you’re going to lash out sometimes at people who just don’t “get it” (and some who don’t seem to even try). There are days when all I want to do is throw out all the medical stuff, cancel doctor’s appointments, and just be free from it all and let the diseases do what they’re going to do. It just gets hard to deal with it all day after day when there doesn’t seem to be an end in sight.<br /><br />When I saw my PCP/LLMD (Lyme Literate Medical Doctor) in the early spring, I told her that I had a goal to be off of IVs, at least on a daily basis, in a year. This goal surprised her and, although she didn’t outright tell me it was an unrealistic goal, she basically said it’s not that likely to happen but that it’s good for me to have a goal to work towards, “Even if it doesn’t happen.” That was probably four months ago at least and I’m not any closer to seeing that light at the end of the tunnel of being able to stop the IVs. I’ve had to decrease the dose of my IV antibiotic for the summer due to awful sun sensitivity which was frustrating because I was tolerating the higher dose well and was hoping that it might help me see a little more improvement along with an oral antibiotic that was added to my treatment to hopefully get at the Bartonella (another tick-borne disease, also called Cat Scratch Disease/Fever).<br /><br />At this point I have been on so many different treatments and my options of other things to try are becoming more limited. This is somewhat scary and frustrating because it really makes me wonder if I’ll ever be well enough and have made enough progress to be able to go off treatment. There’s a newer IV antibiotic that I tried at the beginning of this month because I was able to get about a week of it for free through my doctor’s office. I was hopeful about this new treatment because it’s supposed to act in a way that’s different from other antibiotics but after two doses I was feeling so awful from side effects that I was miserable and ended up stopping after just three days. But my doctor still wants me to try to get it covered by insurance and go on it for longer, maybe only doing it three days a week. However, getting it approved by insurance is kind of a long shot. And would it be worth it to deal with all the awful side effects I was having and how sick I felt on it? I don’t know that it would help, but I think I’m at a point where I’m ready to go full force into anything my doctor wants to try because I don’t have a lot of options left.<br /><br />And then I wonder if we are missing a piece (or multiple pieces) of the puzzle. Are we ignoring some kind of underlying issue that would make a difference to have identified? For a long time, probably since reading much about it and/or meeting and getting to know people who have it, I’ve been suspicious that I have Mitochondrial Disease that just makes everything worse and harder to treat. The pieces seem to fit with this but for some reason I haven’t made the leap to see a Mito specialist…yet. About three years ago I was close to pursuing it but just didn’t. And now, since I kind of have this goal lingering in the future, I’m very close to taking the leap and making an appointment with this doctor. I just don’t want to go through all the annoyance of seeing a new doctor, having to go through all my medical stuff with them, if it isn’t actually that likely that it will be helpful. So everyday I think about it, I go back and forth, and it’s kind of a way of procrastinating. Because the longer I take to decide whether to even make an appointment with this doctor, the longer I can go before having to deal with it. But the thing that is most compelling in my mind that I really do have Mito or something like it is that people I know who have it have wondered if I might have it, too, without me saying anything about my suspicions.<br /><br />In past blog entries, I’ve also talked about how I’ve found it almost more difficult to be feeling better and able to do more things than to be sick and house/bedbound because at least when you’re really sick and unable to function in the world very well, you know not to expect to be able to go out and do things. But when you’re able to be doing more, you have so much more to lose. I’m not saying it’s worse to be doing better, it’s just hard in a different way.<br /><br />Okay, I’ve kind of gotten away from the original topic here. Am I really that much better than I was a few years ago? Yes, I’m working. Yes, I was able to live on my own essentially for two years and mostly support myself (except for all my medical expenses and other major, unexpected expenses). But does this mean I’m really much better? Or am I just better at handling the symptoms? Do I just have more treatments that keep me stable? I know that without my IV hydration/vitamins/amino acids (but mostly it’s the hydration, I think) I crash and have a lot of trouble functioning. I know that if I’m off antibiotics for more than a few weeks or a month, I start getting worse. So does that count as being “better” than I was?<br /><br />I don’t want to rely on IVs of any kind for the rest of my life. I don’t want to be dragging around backpacks of infusions everyday for years to come. If I do have to be on these IVs for a lot longer (as in many years into the future) I just wish I <i>knew</i> that’s how it’s going to be. I hate the unknown and having very little control over it all.<br /><br />And the other thing that’s frustrating is dealing with people who really don’t understand what it’s like to live with a chronic, debilitating illness and have to put up with all of this stuff. I just (finally) got out of an apartment situation where my roommate thought she understood much more than she did and jumped to all kinds of conclusions, made all kinds of assumptions, that were wrong. And there are people who see me in little spurts and I think it’s hard for them to see that they are only seeing one tiny little bit of my life. It’s hard enough to deal with all the medical stuff, but dealing with people is sometimes even harder. There aren’t many people who really understand. And they understand because they deal with their own illnesses, their own issues that are so similar to mine but at the same time they don’t presume to know what it’s like to be dealing with my unique issues and I do my best to do the same back to them. I just wish I could be around these kinds of people more often. I wish they didn’t not live so far away from me.<br /><br />So, you can probably tell I’m struggling with some things right now. And right at this moment I’m struggling to stay awake to finish writing this. I started my long infusion (hydration, vitamins, amino acids – sometimes I refer to it as PPN: Partial Parenteral Nutrition) late today so it’s not going to be done for a few more hours but I’ll probably go to sleep for a while and let my pump wake me up when the infusion finishes. I’m not sure that I ended up writing anything meaningful. I’m not sure that I wrote what I wanted to write. But at least I’ve written something. And maybe now that I’ve written on here again, I’ll keep the ball rolling and keep writing and reflecting. I certainly have a lot of ideas of things to write about, they just somehow seem more interesting and meaningful in my head sometimes.<br /><br />Yours,<br />Penguini<br /><br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image006.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com1tag:blogger.com,1999:blog-16381928.post-65106281922165362562009-02-16T14:04:00.003-05:002009-02-16T16:08:59.370-05:00How can I not love them?This is a short video I took the other day with my cell phone. My preschool class slipping and sliding around on the ice and having a ball! (The girl who comes up to me and tells me her hat keeps falling off is a kid I have a very close bond with.)
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<br /><embed width="448" height="361" type="application/x-shockwave-flash" wmode="transparent" src="http://img.photobucket.com/player.swf?file=http://vidmg.photobucket.com/albums/v456/penguini1982/2009/February/0213091109.flv">
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<br />Yours,
<br />Penguini (aka Miss Annie)
<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/DI73-025.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-49006731424070003282009-02-14T21:57:00.002-05:002009-02-14T22:29:27.132-05:00SurvivingI figured it was about time I wrote something else, regardless of how brief it might be, to put up since my last blogging was pretty depressing. First let me say that that previous blog entry reflects a lot that I often don't verbalize or write about, especially in any kind of venue where many people can read it. It therefore may have shocked some people because I often seem like a very upbeat, optimistic person who doesn't let anything really get to me. And in some ways I am that person.<br /><br />But in many ways I think that is a persona I put on for the sake of others (and to an extent for myself) to make things easier. It's my survival technique, I guess. Well, one of them. It is easier to go about my life if people see me as okay with everything because then they are less likely to overstep their bounds and hover or go in the opposite direction and run away, thinking I'm just too much to deal with and too intense. And I try not to let things get to me. But it's inevitable that things will catch up with me and, sooner or later, I will have trouble dealing with it all and just need to shut down for a while. When this happens, I have to become even more introverted and usually isolate myself because it takes everything I have just to deal with myself, I can't spend any energy dealing with other people. I guess in a way I have to be selfish for a while. To the outside world it might look like I'm spiraling downward into a pit of despair, but it's another one of my survival mechanisms. I guess I've developed quite a few since I've been dealing with all of this for more than a decade.<br /><br />I guess what I want to say more than anything else here is that somehow I always get through what I have to get through. I survive, plain and simple. I don't want to live my life in survival mode all the time because that isn't really living. But sometimes it takes everything I have to make it through the next day, hour, or minute and all I can do is go through the motions until things get easier. I don't need people to hover around me, afraid I might break if they turn away for a minute and leave me on my own. But often this is the opposite of what I need. I handle things best when I have my space. It's really only when I'm feeling relatively well that I can really handle interacting with people, especially people who, as well-meaning as they might be, cross the boundaries that I try hard to lay down without having to specifically state them.<br /><br />And when I'm not feeling well and find it hard enough to just deal with and take care of myself, it feels like a seemingly impossible task to deal with "healthy" people who just don't get it. This isn't all "healthy" people, there are some I can handle in small doses, but so many people either don't get it at all or, even worse, <i>think</i> they get it and can't understand why you don't jump at their suggestions of how to make yourself better. I guess right now I feel a little bit between two worlds - the "healthy" and "sick" worlds. But it's a lot easier for me to relate to those who are, or have been, seriously or chronically ill. In many ways I feel like that world is and always will be much more my home.<br /><br />The problem is that it is unfortunately a home that exists for me online more than physically around me. So I have to settle for e-mailing, IMing, posting on message boards, and interacting with some of my best friends without seeing them in person more than once every few months, if that often. I'm okay with that, although I wish it was different and I could live in a community with others who understand what it's like to be a young adult dealing with somewhat unusual circumstances. I would be even more okay with it if those physically around me (and I'm mainly talking about non-family members) understood that I am living the best I can and their suggestions, while good-intentioned, are for the most part completely unhelpful and can even be hurtful because I feel I am being judged. (Those of you aware of a recent situation may know what (and <i>who</i>) I'm getting at with this.)<br /><br />So if you are one of the people that I see on a regular basis and I seem to be struggling more than usual, please recognize that I'm dealing with things the best that I can and allow me to go into survival mode for as long as I need to. Often the more people push, trying to get in and find out what's wrong, the more I withdraw and it ends up backfiring. Try to recognize the boundaries I draw in the sand and give me that space to do what I need to do. Eventually things get a bit easier and I can come out of survival mode, at least for a while. And if you know someone who is in a situation similar to mine, please refrain from offering advice unless they ask for it. I guess I can't really speak for others, but I know I'm not alone in feeling that unasked for advice is frustrating to deal with. Trust that we do what we can and we (usually) know where we have to draw the line. We survive. And hopefully we get to throw in some real living every now and then.<br /><br />Yours,<br />Penguini<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/1383258665.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com2tag:blogger.com,1999:blog-16381928.post-19154617857371879002009-01-18T18:50:00.001-05:002009-01-18T19:49:14.832-05:00Really Struggling<center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/Meatduskinbogs3.jpg"></center><br /><br />I am really struggling right now. I don’t know exactly how long things have been kind of brewing under the surface, how long I’ve been about ready to burst and feel overwhelmed by everything, how long I have been ignoring my real feelings and just trying to convince everyone else and myself that I’m okay. But I guess that doesn’t really matter now. Looking back, I think I’ve been almost constantly close to a breakdown since before I was in the hospital - when I was so worn down by the fevers and everything else with the infection. After I got out of the hospital in mid-November, I kind of hid my head in the sand and tried to ignore the medical world. I recovered from the staph infection which was a big relief but that didn’t mean that everything was suddenly fine. Things are not fine. They are far from fine. And I just don’t want to deal with it anymore. I don’t want to live around IV schedules. I don’t want to be so exhausted everyday that the thought of having to get up in the morning is painful. I don’t want to have this line in my arm, to be awaiting a call from the surgeon to have a new port placed in my chest, to feel like I can never truly be free from medical contraptions because there is always some foreign tube inside of me.<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/PICCline1.jpg"></center><br /><br />And I’m beginning to look towards the future with doubts. I don’t know how to really explain it other than saying it seems dim, foggy, unclear, and I am unsure if I will ever feel like I’m really living my life rather than surviving it. And even more difficult, I don’t honestly know how long my road will be. There are times – days, hours, even just moments – when I feel like I will not be here to grow old and grey. There are times when I don’t want to be here. And I don’t know which is worse. Not wanting to be here just brings thoughts that it really wouldn’t be so bad to just give up fighting and let go. I am in so much pain. Beyond anything I reveal to anyone, probably beyond what I allow myself to think about. I have been through so much and I just don’t know if I can muster up the strength to continue on like this for years and years to come. It’s too much sometimes. And on days when hope seems far away and I feel so alone, I wonder if it’s worth it.<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/Me3.jpg"></center><br /><br />Today a seemingly stupid, insignificant thing set me off. After a long morning and afternoon of church, a Parish Committee meeting, and errands of all sorts I came home really looking forward to getting to eat some of the leftover pizza I had made last night – a pizza I had made for myself after making one for my sister (I gave her certificates for homemade pizza for her birthday). But when I got changed into my comfy pjs, ready to settle in for the rest of the day, and went to heat up my pizza I discovered it wasn’t there. I asked around and my sister admitted to eating it for breakfast. This was a pizza she very well knew I had made for myself and without even asking – no text message, no phone call to ask if it was okay – she and her boyfriend ate it. It seems rude, disrespectful, and even if it was not meant to hurt me, it is hurtful that someone would disregard my feelings and do something that they probably realized might be upsetting. It is all made worse by the fact that when I made the pizza last night, I was feeling sick and really not up to making pizza at all. But my sister had asked to turn in one of her certificates and get a pizza last night so I went out to the store for her requested toppings, made the dough from scratch, and made her the pizza she asked for and then, with some of the leftover dough, made one for myself. The precious energy I invested in this endeavor was for her with only a little expended on myself. Of course she didn’t know that until I told her (in a text message) but regardless of that, I was very upset and immediately got back in my regular clothes, borrowed my mom’s snow boots, and went out for a walk because I didn’t want to be here anymore, which I mumbled to my brother as I left the house. And as I walked, I was thinking, “What do I mean that I don’t want to be here anymore? Do I not want to be in the house? Or do I truly not want to be HERE – on the earth, alive, fighting, dealing with all this crap?”<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/BogSunset.jpg"></center><br /><br />I walked. I texted with my sister to let her know that I was very upset about it but she mostly just jumped down my throat for being upset about it and there wasn’t anything she could say that would make me feel better about it. In my life lately, I’m finding few things that I really look forward to. And as seemingly insignificant as it may seem, I was really looking forward to eating that pizza. It was a little thing, but it kept me going as I ran my errands. I was already exhausted and somewhat upset when I got home (not upset about anything specific, just everything very close to the surface, about ready to bubble over) and then to realize that the little thing I was looking forward to was not there waiting for me…it was too much and I broke down.<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/Bogsatdusk.jpg"></center><br /><br />As I walked in the bogs, I let my thoughts and tears flow. I cried in anger – towards my sister for eating my pizza (it sounds stupid now), towards this disease for taking so much from me, towards myself for letting things upset me in the first place, towards my body for betraying me and allowing all of this to be so bad. I cried in grief for all that I have lost. I cried because I don’t want to be here anymore. And I cried because I want to be here so badly. I took some pictures with my phone and when I looked back at them I got to some pictures I’d taken of the kids at the preschool and I cried at those pictures, thinking how I care about those kids but don’t want to go back to work. Thinking about how much those kids care about me and how much I don’t want to hurt them in any way. I cried because I don’t feel like I belong anywhere, I don’t want to be anywhere; I just want to be able to go off by myself to some quiet place and leave everything else behind.<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/CarinaErikandRebeccainBlockRoom.jpg"></center><br /><br />I tried to think of someone I could call to talk about all of this, and came up empty handed. I have some friends who kind of understand – friends from the “medical world” – but no one I felt I could call up and cry over the phone about pizza without them thinking I was stupid. And now I’m crying again as I write this and I can’t figure out what I’m crying for, there are just so many things all jumbled together and I’m so tired of all of it. I don’t want any more treatments, no more pills, no more infusions, no more tubes. But I know that if I were to truly stop all my treatment, my quality of life would be gone, I would be totally disabled, and I don’t know that it wouldn’t go on for years and years like that – pain, exhaustion, confusion, nausea, palpitations, sweats and chills, everything I have been dealing with for years and years but on a greater level.<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/Meatduskinbogs4.jpg"></center><br /><br />I feel like I am rambling at this point. I don’t know that I’ve written what I wanted to write. I don’t even know what I wanted to write. I just needed to write something. I don’t feel better. I feel like there are still so many tears to cry tonight, so much to cry over, so much to think about, and in some ways, so many decisions to make. I am trying to decide how much I want to fight; even though I know it really isn’t a decision that will end with anything but my going on to do what I have to do. Part of me wants to just rip the PICC line from my arm and give up. And part of me wants to pump myself full of all the medications I can in an attempt to regain any little bit of my life that I can. I don’t want to feel like this, but I can’t help it. I want to be the happy, hopeful person that so many people see me as but I wonder how much of that is really me and how much is a guise I put on for the sake of others and to trick myself into thinking that I’m okay. But I’m not okay. I’m far from okay. And I don’t know when I’ll be okay again.<br /><br /><center><img src="http://img.photobucket.com/albums/v456/penguini1982/2009/Meatduskinbogs6.jpg"></center>Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com3tag:blogger.com,1999:blog-16381928.post-47658355780635227962008-07-23T19:11:00.003-05:002008-07-23T20:38:11.877-05:00Learning to Fly<center>Presented on July 20, 2008 at<br /><a href="http://www.uumiddleboro.org">The First Unitarian Universalist Society of Middleboro</a></center><br /><br /><i>“Healing may not be so much about getting better as about<br />Letting go of everything that is not you,<br />All the expectations,<br />All the beliefs,<br />And becoming who you are.<br />Not a better you, but a realer you.<br />We need to let go<br />To throw away everything that isn’t us<br />In order to be more whole.”<br />--Rachel Naomi Remen</i><br /><br />When I last stood up here and spoke I was in the midst of a leave of absence from college, I was managing to work a limited number of hours at the Marion Art Center and was teaching theater classes one afternoon a week, I was living with my parents in Rochester, and I spoke about how to live with chronic illness and what my journey has taught me. That was three years ago and a lot has changed. I finally graduated from college with a bachelor’s degree in Human Development and a minor in Theatre Arts after more than 7 years as an undergraduate student. I got a job as an assistant preschool teacher in Newton, Mass and moved up there for the school year and will return in the fall for a second year at the same preschool. The Young People’s Theater program at the Art Center has grown and I teach three classes on two days a week and will be adding a fourth class this fall for preschoolers as well as occasional weekend workshops and extra classes. But while so much has changed, so much has also stayed the same and the past three years have been anything but easy with many ups and downs in my health and other areas of my life. And I have begun the process of going down the next path in my life and taking steps into the “real” world. While this process has been difficult and I still struggle with it on a daily basis, I feel I am finally beginning to step out and be independent. I may be doing this later than many people but I feel like I am finally finding my wings, spreading them wide, and learning how to fly.<br /><br />This flying metaphor has a lot of meaning to me. The idea of flying has always felt like the ultimate freedom. Being able to just take off and soar through the sky, see the world from a different perspective, and feel the wind whipping against your skin and blowing in your hair sounds amazing. And this is a freedom I have longed for, not literally to fly but knowing that freedom of leaving the world behind and being liberated. I don’t think this is anything I necessarily thought about before I got sick when I was 15, but it certainly has all the more meaning having gone through so many years of being confined by my illnesses and conditions and, much of the time, being literally tied down to IV poles and pumps.<br /><br />But the desire to fly has another, more silly and creative meaning to me. When I was probably 14 or 15 my older sister gave me the nickname Penguini. I remember clearly walking across the parking lot to our car after eating at Sam Diego’s in Plymouth for my sister’s birthday or some other event and I began walking like a penguin (don’t ask me why, just one of my silly moments). She called me Penguini and the name stuck. But it didn’t end at a nickname. I developed a whole story and persona of Penguini. And Penguini is a penguin who longs to fly. “As long as she could remember she always wanted to fly. She felt weighed down by gravity, by the land, by her solid bones. She envied the gulls and albatrosses that could spread their wings and fly high above the icy ground. To Penguini flying was freedom and she longed more than anything else to feel that freedom.” I have written the story of <u>Penguini: The Penguin Who Longed to Fly</u> and you can read it <a href="http://penguini82.blogspot.com/2008/07/penguini-penguin-who-longed-to-fly.html">here</a>.<br /><br />I feel I have begun to take my own leaps and begin to learn how to test my wings and fly off on my own, but at the same time I feel hindered by the strings that connect me to the “medical” world and will not let me truly go off and soar by myself. This past year has been a test as to how well I can balance the two worlds I inhabit – the “real” world and the “medical” world, but don’t get me wrong, the “medical” world is very real, too. I have spent so much of my time over the past 11 years focusing on seeing doctors, figuring out what is wrong and how best to deal with or fix it, and generally delving deeper and deeper into the medical world.<br /><br />For those of you who may not know that much about my whole medical story, when I was 15 I got sick and was diagnosed that year with Lyme disease, a diagnosis that later became chronic Lyme disease as we realized the full nature of my case. It probably dates back to when I was about 8 – 18 years ago which just seems crazy to think about. Over the few years following my diagnosis, I went on treatment, got a little better, went off treatment, got worse, then went to doctor after doctor with treatment after treatment and saw little improvement until I began IV antibiotics in 2002 when I was 20. That helped a lot and I was slowly rejoining the world but when the treatment stopped (due to my insurance stopping coverage of the IVs) I got worse again after 4 or 5 good months and the quest for a new treatment began again. Since 2004 I have had a port-a-cath in my chest and been on various IV treatments, including antibiotics, hydration, and nutrition. I’m often seen carrying around a small backpack of some sort which contains a small portable pump (an amazing invention) and the bag of IV medication and tubing that’s attached to my IV line.<br /><br />I also have diagnosis of Dysuatonomia or autonomic nervous system dysfunction which affects many systems of my body; Gastroparesis which literally translates to “paralyzed stomach” and affects my ability to eat; and Reactive Hypoglycemia and Hashimoto’s Thyroiditis, neither of which have much impact on my daily life. We suspect there may be other conditions going on but I have yet to receive any other diagnosis. Some people might say dealing with all of this and struggling so much to try to lead a “normal” life isn’t fair. But I don’t think “fairness” has anything to do with it. There are difficulties in everyone’s lives. And it’s pointless to try to compare one struggle against another, to measure one person’s obstacles with someone else’s. Sure, there are times when everything is too much, but doesn’t everyone have those moments?<br /><br />So after 11 years of dealing with these illnesses and conditions to one extent or another, I finally felt well and stable enough to try to take the leap and get a job, an apartment, and go out on my own to see if I could do it. This past year I did just that and I survived! I was still on a lot of medications and IV treatments to keep me stable, but I made it through the year and proved that I am capable of it. But suddenly jumping into the “real” world wasn’t easy. Rejoining society is like moving to a new country. The disorientation of moving into a new society, not speaking the language, not understanding the cultural priorities after having such different concerns for such a long time, and not having them understand you is quite a challenge. But it goes even further than that. Getting sick in a lot of ways is like going to a foreign country where you have to learn a new language with all the medical jargon, you have to learn new priorities and adjust to a new lifestyle. And after a while you get used to it. And then you decide to move to another new, foreign, more or less unknown country that you have seen from a distance but never truly existed in. The transition is difficult.<br /><br />I was more or less up front about my health issues with the co-directors of the preschool and with the other teachers in my classroom and they were pretty understanding, but not the kind of understanding I have from friends in the “medical” world. I feel awkward in the “real” world. I am a stranger in that world, a place I have seen going on around me but that I have felt is largely spinning by without me. And since I was relatively young when I first got sick and my world changed, it wasn’t that I was re-learning how to be in the world, I was learning for the first time. I felt that I was suddenly thrust into the new, strange, but exciting world and having to navigate my way without feeling like I knew what I was doing. I was consciously trying not to make my medical stuff central to the relationships I was forming with people at the preschool, I made a very conscious choice to not go into work hooked up to my tubing and backpack until it became necessary at the end of the year (and it really wasn’t a big deal – 4- and 5-year olds are so accepting!). I was trying desperately to exist in the “real” world, keep the foot I had in the “medical” world balanced, and get out there and do all the things I hadn’t been able to do for such a long time.<br /><br />And this is where a dilemma lies. When I’m doing well, I naturally want to run out and do things because I have been unable to do things for such a long time. I want to make up for all that lost time. And in some ways I was trying to make up for not having been a productive member of society for such a long time. I needed to run around like crazy, working all kinds of jobs (all of which I did enjoy), sometimes neglecting my health, to help myself feel a part of the world and to help myself feel worthy after so many years of feeling like I could do nothing. So I ran around, I taught preschool, I drove down here to Marion from Newton to teach theater classes, I taught swimming lessons at the Y in Needham, and I left myself little time for actually resting and taking care of myself. In a nutshell, I overdid it and went too far in the direction of trying so hard to be a part of the “real” world. And it didn’t bring the kind of connection and joy that I wanted to get out of it, it just made me exhausted and I was constantly sick with one thing or another (a hazard of working with young kids).<br /><br />In a lot of ways it's scarier to be somewhat well than to be sicker and more debilitated. When you're sick and can't do much, you can expect to wake up and feel badly, you don't expect to suddenly be able to do a lot and, while crashing is still scary, it's a little easier anticipated and handled because there isn't as much to lose. But when you're relatively well and able to be working and fitting in fun things from time to time, crashes are so much harder to deal with because there's a lot farther to fall and much more at stake. If I crash now and I crash hard, how would I manage to continue working? Would I have to take time off of work? Would I be able to manage financially? What would happen to the independence I've finally gained after such a long time of being so dependent on my parents and other people in so many ways? So many things to lose.<br /><br />In June I began a long and scary ordeal showing me how quickly things can change. Upon switching the antibiotic treatment I was on, I developed high fevers. The two things were apparently unrelated but happened during the same weekend so it complicated the puzzle. I don’t get fevers and these were scary high. I waited to call my PCP thinking it was just a virus, the flu, something that would pass on its own. But when the fevers dissipated only to return again just as high as before I realized something else was going on. And of course, always the puzzle, we couldn’t really figure out what was causing them. Our fear was that my port, my permanent IV line, which serves as a lifeline for me, was infected but thankfully that didn’t seem to be the case. We identified 2 infections but treatment for them brought no relief from the fevers. I am still dealing with them, nearly two months after their onset, and they are taking their toll. About every 2-3 days, often at night, I will feel the telltale signs of a fever coming on and brace myself as I see my temperature climb to nearly 104* and then slowly come down. The whole thing lasts 4-5 hours and then I’m alright, although exhausted and obviously not feeling at my best. We believe we’ve figured out what is causing them, a tick borne disease called Babesiosis that is often transmitted along with Lyme disease. It is related to malaria and is an infection I’ve been treated for many times in the past, but never with symptoms this severe. So, I will begin another course of treatment this week and hope and pray that it brings an end to the draining fevers.<br /><br />This ordeal brought up the very real fear that lies close below the surface of my mind – have I come this far only to fall back down again? I know how far I have to fall now, how much there is to be lost. Those memories of my lowest times – when people (perhaps myself included) just thought I would fade away entirely. Those scary times when my confusing health picture baffled all my doctors (although I continue to do this, just in less scary ways). I know what it’s like to be there and I know how long it’s taken to come back from that.<br /><br />Through the past few years I have had to begin defining myself in a different way, pushing aside the definitions that have been at the forefront for such a long time. When my life seemed to completely revolve around doctor’s appointments, medications and infusions, and spending time resting in bed or generally being incapacitated by my illnesses and conditions, I was largely defined by my existence in the medical world. Now as I begin to step out into the “real” world, I have begun to define myself in other ways. But I can never leave behind the definitions I’ve had for such a long time and I can never, nor would I ever want to, wash away the past. I have come to where I am largely because of what I have been through. But trying to create these new definitions of myself brings with it some problems. I find myself trying to push aside my role in the medical world so I can try to exist entirely in the “real” world, but this is to the detriment of myself and my health. I cannot deny the fact that I still must exist within the medical world, rather I must find the balance between the two, which is a difficult thing to do.<br /><br />I love that I’m able to have this existence in the “real” world – to have a job and an apartment and be out there doing all these things that for such a long time I had seen as impossible. But I also yearn for the understanding that can only come from people who have been through the things I’ve been through. I have friends in the “real” world and they are great, supportive, understanding, but they know very little of the whole story because we simply do not talk a lot about it. Those friendships are in the “real” world and we (or maybe <b>I</b>) try to keep the medical interference to a minimum. But then I have friendships in the “medical” world that offer the kind of understanding and support that just cannot be found anywhere else. I have friends who have the same set-up with the backpacks and portable pumps, I have friends who understand the need to rest and how difficult it can be to feel so alone, I have friends who I feel so comfortable with I could share just about anything. These friendships run deep and I have tried so hard over the past year to keep them alive because <b>I</b> have been the person left behind by another who gets well and moves on with her life and I never want to do that to any of my friends. It’s difficult, but I try, and those friendships are so meaningful I don’t think they will ever truly go away.<br /><br />So, how am I doing trying to reintegrate into society? I’d say I’m doing alright but I’m realizing just how many obstacles there are to face and overcome. But regardless of how difficult it is, I’m doing it. That is perhaps the most important thing to me – I’m managing to work and support myself. I worry that things will change so I’m trying to get the most out of these experiences. But at the same time I’m trying desperately to plan a future without having the “medical” world at the forefront. Right now I am really hoping to be able to move out to Oregon in a year or so. My sister and brother-in-law live there, I love the area, and I want to go to grad school somewhere on the west coast. But with these plans I’m facing the question of whether I will be well enough to actually do it, to leave my doctors behind here (perhaps staying connected through phone calls and visits every 4-6 months), to set out on my own even more than I’ve already done. But my view on it right now is that all I can do is try it. I can’t wait around, hesitate, worry that I might make a wrong decision, because there are no right and wrong decisions, there are just decisions. If I take the plunge and it doesn’t work out, it doesn’t work out and I make another decision. "Sometimes you just have to take the leap and build your wings on the way down" -Kobi Yamada. Or, As Elphaba in <i>Wicked</i> says:<br /><br /><i>I'm through accepting limits<br />'Cuz someone says they're so<br />Some things I cannot change<br />But till I try, I'll never know!</i><br /><br />So I have to trust the instincts I have and take the leaps when I can, but at the same time I have to remember that my body isn’t necessarily up for all the things I want to do. It’s hard to hold back, but I have to try to keep that balance in order to keep myself stable enough to do the things I love to do. And I have to trust and have faith that things will be okay, no matter what happens, no matter where I end up going, no matter what decisions I make, it will be okay in the end. Because, “Everything will be okay in the end. If it’s not okay, then it’s not the end.” I will continue to build my new identity and strive for a good balance between the two worlds I live in. It may be a struggle, but I’d rather be struggling to fly than standing on the ground watching all the birds above me.Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com2tag:blogger.com,1999:blog-16381928.post-43210895648145192242008-07-23T18:43:00.001-05:002008-07-23T18:43:48.710-05:00<p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><u><span style="line-height: 180%;font-family:";font-size:11;" >Penguini: The Penguin Who Longed to Fly<o:p></o:p></span></u></p> <p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><span style="line-height: 180%;font-family:";font-size:11;" ><!--[if gte vml 1]><v:shapetype id="_x0000_t75" coordsize="21600,21600" spt="75" preferrelative="t" path="m@4@5l@4@11@9@11@9@5xe" filled="f" stroked="f"> <v:stroke joinstyle="miter"> <v:formulas> <v:f eqn="if lineDrawn pixelLineWidth 0"> <v:f eqn="sum @0 1 0"> <v:f eqn="sum 0 0 @1"> <v:f eqn="prod @2 1 2"> <v:f eqn="prod @3 21600 pixelWidth"> <v:f eqn="prod @3 21600 pixelHeight"> <v:f eqn="sum @0 0 1"> <v:f eqn="prod @6 1 2"> <v:f eqn="prod @7 21600 pixelWidth"> <v:f eqn="sum @8 21600 0"> <v:f eqn="prod @7 21600 pixelHeight"> <v:f eqn="sum @10 21600 0"> </v:formulas> <v:path extrusionok="f" gradientshapeok="t" connecttype="rect"> <o:lock ext="edit" aspectratio="t"> </v:shapetype><v:shape id="_x0000_i1025" type="#_x0000_t75" style="'width:98.25pt;"> <v:imagedata src="file:///C:\DOCUME~1\ANNIEG~1\LOCALS~1\Temp\msohtml1\01\clip_image001.jpg" title="flying-penguin2"> </v:shape><![endif]--><!--[if !vml]--><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image002.jpg" /><br /><!--[endif]--><o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >Penguini was a penguin. Her real name was Penelope Penguin but when she was very young she had gotten the nickname Penguini from her sister, Pamela, because she loved to try out magic tricks. Penguini, Pamela, and their parents, Paula and Pablo Penguin, lived in a cozy igloo in the chilly Antarctic ice near the South Pole. Penguini loved to play with her sister, she loved to go sliding around on the snow banks and ice flows, she loved going to school and learning all about the famous penguins from history, especially Tux, the penguin famous for creating Linux, although silly humans thought Tux was just a cute spokespenguin to help sell their product and he didn’t get any of the credit for actually creating the program. And of course she loved magic. She could spend hours and hours in the library reading about Houdini and David Copperfield. Of course Houdini was her favorite magician, seeing as her nickname was similar to his name (and probably the inspiration Pamela had in mind when giving her the nickname).<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >Penguini learned card tricks, how to pull a penguin chick out of a hat (after all, there really aren’t any bunny rabbits in Antarctica!), how to pull a bouquet of flowers out of thin air, and how to make food disappear quickly, although that last one may not have been magic so much as an empty stomach. But the one magical trick Penguini wanted to learn most of all was one she couldn’t seem to manage. Penguini longed to fly. Her parents always said that when she was just a little chick she would flap her wings as fast as she could as though she was trying with all her might to take off into the air. As long as she could remember she always wanted to fly. She felt weighed down by gravity, by the land, by her solid bones. She envied the gulls and albatrosses that could spread their wings and fly high above the icy ground. To Penguini flying was freedom and she longed more than anything else to feel that freedom. <o:p></o:p></span></p> <p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><span style="line-height: 180%;font-family:";font-size:11;" ><!--[if gte vml 1]><v:shape id="_x0000_i1026" type="#_x0000_t75" style="'width:87.75pt;height:129.75pt'"> <v:imagedata src="file:///C:\DOCUME~1\ANNIEG~1\LOCALS~1\Temp\msohtml1\01\clip_image003.jpg" title="MPj04069080000[1]"> </v:shape><![endif]--><!--[if !vml]--><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image004.jpg" /><br /><!--[endif]--><o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >She had tried to tell her friends and her parents about her secret desire but they all just laughed at her. “Penguins? Fly? That’s the silliest thing I’ve ever heard,” said Paula, one of the more popular girls at school. “Just face it, Penguini, you’ll never be able to fly,” Percy, a teammate of Penguini’s on the swim team, told her. “We’re just not built that way so you should just get used to it.” But despite all the laughing and jokes at her expense, Penguini still held on to her dream. And she was determined to make it come true one day. She wasn’t sure how, but she felt it right down to her heavy, solid bones that one day she would take off into the air and find herself soaring through the sky.<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >Every night she would fly in her dreams. She would soar high up to the clouds, feel the wind whipping at her face and tickling her flippers, and she could feel that freedom. The world wouldn’t weigh her down anymore and she could leave all her worries and troubles behind and just be alone with the clouds and the sunshine and her thoughts. But every morning she would awake and be reminded that she was only flying in her dreams and her heart would sink a little bit. Her friends and family loved her, she knew that, but she also knew they just couldn’t understand her deepest desire. They were all content to waddle about on land, slide along the snow, and swim in the cold water. Her swim team told her that she should think of swimming as her form of flying. “After all, we do use our wings like the air birds do while we’re under water. Can’t you feel free doing that?” Percy asked her one day at swim practice. “It’s just not the same,” Penguini responded, and she dove into the water to swim her 500 meter freestyle.<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >Time went by and Penguini grew up but she never abandoned her dream of flying. And then came the day that changed her life. She was out for a long waddle along the shore which she did quite often as a way to get away from the crowd and have time along with her thoughts, when she decided to stop and rest for a while.<o:p></o:p></span></p> <p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><span style="line-height: 180%;font-family:";font-size:11;" ><!--[if gte vml 1]><v:shape id="_x0000_i1030" type="#_x0000_t75" style="'width:215.25pt;height:162pt'"> <v:imagedata src="file:///C:\DOCUME~1\ANNIEG~1\LOCALS~1\Temp\msohtml1\01\clip_image005.jpg" title="Penguin on water edge"> </v:shape><![endif]--><!--[if !vml]--><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/Penguinonwateredge.jpg" /><br /><o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >She began thinking about things – about her life, about her dreams, about the goals she had set for herself, and about what she really wanted to do with her life. She was deep in her thoughts, very serious thoughts for a young(ish) penguin (she was only 5…that’s about 25 in people years). She thought about all the criticism her friends and family have given to her about her dream, how they had laughed at it, and how she had stopped telling people about it because she didn’t want people to mock the dream that was so important to her. She always kept hope alive that one day she would realize her dream and be able to soar through the sky. And as she sat there deep in thought looking up at the clouds passing by something came over her. She came to the realization that she shouldn’t feel held down by her limitations as a penguin, a “flightless bird” as they’re are often referred to, but learn to let her heart and spirit carry her wherever she wanted to be.<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >On that sunny afternoon on the edge of the ice and snow, Penguini’s heart felt light and she felt as though a weight was lifted from her shoulders. She felt a sense of freedom come over her. And she knew that she needed to break free from her life for a while to go in search of her true happiness. She realized that the expectations that other people had for her had a big part in weighing her down, not gravity and her heavy, solid bones that she blamed for her inability to fly. Penguini was scared to go off on her own but she knew that if she didn’t she would always be living the life that everyone else wanted for her – to remain in the same village, become a responsible adult, make other people happy – instead of living the life that she didn’t even realize she wanted yet.<o:p></o:p></span></p> <p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><span style="line-height: 180%;font-family:";font-size:11;" ><!--[if gte vml 1]><v:shape id="_x0000_i1027" type="#_x0000_t75" style="'width:99pt;height:60pt'"> <v:imagedata src="file:///C:\DOCUME~1\ANNIEG~1\LOCALS~1\Temp\msohtml1\01\clip_image007.jpg" title="stll_computer_penguin"> </v:shape><![endif]--><!--[if !vml]--><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image006.jpg" /><br /><!--[endif]--><o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >When she got home, Penguini began an internet search for a place to go and work on herself far away from everyone who knew her and had these expectations for her life. She found the perfect place – Penguin’s Rest, a Buddhist retreat center on </span><st1:place><span style="line-height: 180%;font-family:";font-size:11;" >Roosevelt Island</span></st1:place><span style="line-height: 180%;font-family:";font-size:11;" > out on the </span><st1:place><span style="line-height: 180%;font-family:";font-size:11;" >Ross Ice Shelf</span></st1:place><span style="line-height: 180%;font-family:";font-size:11;" >. It was set away from the rest of the penguin villages and provided a place for meditation, contemplation, and awakening which seemed to be exactly what Penguini needed. She worked hard to save up the money for a month-long stay at Penguin’s Rest and a few months later she packed her bags, said goodbye to her friends and family, and set off on the journey for </span><st1:place><span style="line-height: 180%;font-family:";font-size:11;" >Roosevelt Island</span></st1:place><span style="line-height: 180%;font-family:";font-size:11;" >.<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >Penguin’s Rest was the perfect place for Penguini. She got up early in the morning and spent time meditating in her room, then had a wonderfully cooked but simple vegetarian breakfast (who knew penguins liked things other than fish!) with the other visitors at the retreat center, and spent most of the rest of the day in meditation out on the ice flows, in the meditation studio on the top floor of the center, or in group workshops. She was amazed at how much she grew and the rising sense of freedom she found by exploring her own path to happiness without trying to make other people happy.<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >She learned how to sit in stillness and focus inwards while still looking outwards at the world. She meditated, prayed, practiced yoga, and learned more about herself than she even knew there was to learn! Her life changed. And when it came time to leave Penguin’s Rest and return home she knew what she wanted to do with her life. She didn’t want to stay in her village but she wanted to get out into the world, explore, meet other kinds of penguins, and see what lay beyond the horizon. The world was open wide to her and she felt like she could reinvent herself into whatever she wanted. And her dream of someday flying was still there but now she felt like it was all the more real in her everyday life. As she went about her day-to-day activities with intention, she felt her spirit soaring. As she journeyed far to the </span><st1:place><span style="line-height: 180%;font-family:";font-size:11;" >Galapagos Islands</span></st1:place><span style="line-height: 180%;font-family:";font-size:11;" > and the coast of </span><st1:country-region><st1:place><span style="line-height: 180%;font-family:";font-size:11;" >Australia</span></st1:place></st1:country-region><span style="line-height: 180%;font-family:";font-size:11;" > she felt her body become lighter and lighter. It was as though the weight of the world had been lifted from her and she felt freer than she ever had in her short lifetime.<o:p></o:p></span></p> <p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><span style="line-height: 180%;font-family:";font-size:11;" ><!--[if gte vml 1]><v:shape id="_x0000_i1028" type="#_x0000_t75" style="'width:168.75pt;height:127.5pt'"> <v:imagedata src="file:///C:\DOCUME~1\ANNIEG~1\LOCALS~1\Temp\msohtml1\01\clip_image009.jpg" title="Flying%20penguin"> </v:shape><![endif]--><!--[if !vml]--><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image008.jpg" /><br /><!--[endif]--><o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >And one day, without even realizing it, she began to float above the ground. Just a few inches; just enough so that she felt the wind tickling her flippers; just enough so that she felt weightless. Penguini looked down at the ground to discover her flippers had left the snow below her. She smiled from ear to ear and her heart swelled. It was as though she had created a special kind of magic by following her own dreams. She no longer had to go to sleep to dream of flying; she could feel it in her waking hours.<o:p></o:p></span></p> <p class="MsoNormal" style="text-indent: 0.5in; line-height: 180%;"><span style="line-height: 180%;font-family:";font-size:11;" >Over time she learned to float farther and farther off the ground – some may say she was just levitating, a trick that she had learned from one of her magic books, but she knew that this was different. She continued her traveling, learning so much from the other parts of the world and from the penguins and other animals she met. She showed them all how she could fly and told them of her dreams since she was a chick of someday taking off from the ground to be among the clouds. No one laughed at her anymore. No one scoffed at her dream because they could see that it was no longer just a dream. She had realized her dreams by finding the courage to go off in search of herself. And, in this discovery, she had found the freedom to no longer let gravity, and other people’s expectations for her life, hold her down.<o:p></o:p></span></p> <p class="MsoNormal" style="text-align: center; text-indent: 0.5in; line-height: 180%;" align="center"><span style="line-height: 180%;font-family:";font-size:11;" ><!--[if gte vml 1]><v:shape id="_x0000_i1029" type="#_x0000_t75" style="'width:219pt;height:140.25pt'"> <v:imagedata src="file:///C:\DOCUME~1\ANNIEG~1\LOCALS~1\Temp\msohtml1\01\clip_image011.jpg" title="flying penguin"> </v:shape><![endif]--><!--[if !vml]--><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image010.jpg" /><br /><!--[endif]--><o:p></o:p></span></p>Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com1tag:blogger.com,1999:blog-16381928.post-23870195831638000132008-04-15T20:40:00.005-05:002008-04-15T21:21:45.774-05:00Is it worth it?It has been an extremely long time since I've posted anything on here. Mainly it's been because I just haven't had the time and energy to be doing much in the way of creative writing. It's there inside me wanting to come out, but when I'm spending all of my time and energy on work, and driving to teach my theater classes, and running around trying to gather costumes and props, and teaching swimming lessons now, and trying to fit in meals and sleep and medications and infusions it's pretty hard to sit down and let all these words and thoughts come out onto the computer screen (or even a piece of paper if I'm not near my computer). I will often start writing something on a piece of paper, often scrap paper that I happen to have with me at the time, but it never makes it to its conclusion. But tonight I'm feeling contemplative. And I have probably another half hour left of my evening doxycycline infusion which means I can't go to bed yet anyway so I'll just start writing and see where I end up.<br /><br />Lately a lot of people have been telling me they're worried that I'm doing too much. And frankly I'm worried about the same thing even if I don't let on to it very often. This is my typical weekly schedule right now:<br /><br /><ul><li>Monday<br /></li><ul><li>8:00am-3:00pm Preschool</li><li>3:45pm-7:30pm Teach Swimming Lessons</li></ul><li>Tuesday</li><ul><li>8:30am-1:00pm Preschool</li><li>4:00-6:00pm Advanced Theater Class</li><li>7:00-8:30pm Choir Rehearsal</li></ul><li>Wednesday</li><ul><li>8:00am-3:00pm Preschool</li></ul><li>Thursday</li><ul><li>8:30am-1:00pm Preschool</li><li>3:30-6:00pm Beginner and Intermediate Theater Classes</li></ul><li>Friday</li><ul><li>8:00am-1:00pm Preschool (followed by about an hour of cleaning)</li><li>sometimes an appointment around 2pm</li><li>4:30-6:00pm Teach Swimming Lessons</li></ul><li>Saturday</li><ul><li>Often a theater rehearsal from 2:00-4:00pm or 4:00-6:00pm</li></ul><li>Sunday</li><ul><li>10:30am Church (sometimes choir rehearsal at 9:30am)</li><li>4:00-6:00pm <i>Annie </i>Rehearsal<br /></li></ul></ul>So that's my "typical" week nowadays. It's a lot. Each week I feel like I'm putting out more energy than I'm generating and I'm slowly losing my reserve that I usually have to help push through what I need to do. I am flirting with the dangerous ledge that I seem to try to ignore until I'm right there on the edge looking down just before I slide off and crash hard. I hate crashing because it's so scary and it can get so out of control so quickly. In the past I have had many degrees of crashes ranging from mini-crashes to the mega crashes that are really scary and not only scare me but freak out most of the other people around me. Right now I'm probably on the verge of a medium-sized crash but so often a little crash can snowball into something much bigger. And before you know it you're tumbling down the mountainside and just hoping there will be something soft at the bottom to break your fall.<br /><br />In a lot of ways it's scarier to be somewhat well (by which I mean relatively functional in the "real world" and straddling the "real" and "medical" worlds) than to be sicker and more debilitated. When you're sick and can't do much, you can expect to wake up and feel badly, you don't expect to suddenly be able to do a lot and, while crashing is still scary, it's a little easier anticipated and handled because there isn't as much to lose. But when you're relatively well and able to be working and fitting in fun things from time to time, crashes are so much harder to deal with because there's a lot farther to fall and much more at stake. If I crash now and I crash hard, how would I manage to continue working? Would I have to take time off of work? Would I be able to manage financially? What would happen to the independence I've finally gained after such a long time of being so dependent on my parents and other people in so many ways? So many things to lose. So freaking scary.<br /><br />There's a song by <a href="http://lorimckenna.com/">Lori McKenna</a> called Mr. Sunshine that says, "You scare me more than the hard times. I know they're comin' around again. You scare me more than the grey skies. Good morning Mr. Sunshine." It's true. When you're in that "grey sky" time you know to expect the grey skies. But when you're in the sunshine, it's almost like you're always waiting for the other shoe to drop. Or else you're living completely in the sunshine and when the grey skies move in you're taken totally off guard. Neither one is pleasant.<br /><br />Anyway, I'm doing a lot is what I'm trying to say I guess. And I'm scared of that crash. I keep telling myself, "Just make it through this week. Next week is school vacation, you can rest then." But there's a voice inside me saying, "Just make it through the week? How am I supposed to do that?" I honestly don't know how much I have left in my reserve of energy. Somehow I manage to find that little bit of energy I need to get through what I have to get through, much to the surprise of me and everyone around me. But my body is giving me signs that I'm just doing too much. To an extent I can ignore some of the signs. I can deny that I'm completely and utterly exhausted except when I lie down and can't imagine moving a single muscle because of how much energy it will take. I can shrug off the increased headaches and just pretend they're worse because of the weather. I can ignore a lot of things, perhaps that's my stubborn nature coming out, but it's really hard to deny lab results that are there in black and white on paper. Lately they haven't been terrible but my liver is obviously starting to say it's had enough of <i>something</i>. I'm just keeping my fingers crossed that it won't turn into anything worse. When I draw my labs each week I will the numbers to go down (at least the liver numbers, wouldn't want my white or red cells to go down much).<br /><br />Sometimes I honestly wonder if it's worth the sometimes seemingly impossible balancing act to be doing all that I'm doing. If I push myself to do too much because I'm feeling better but it ultimately pushes me into a crash that takes me a long time to pull myself out of, is it worth it? But if I just take it easy all the time and don't really enjoy the time that I <i>am</i> feeling better, is that worth it? It's a double-edged sword I guess.<br /><br />Alright, that's enough pondering for tonight. I need to get myself to bed so I can hopefully get 8 hours of sleep tonight. Just three more days this week and then I'll officially be on vacation! And perhaps I can get things more in balance then.<br /><br />Yours,<br />Penguini<br /><img style="width: 160px; height: 139px;" src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/Penguinsvacation.jpg" />Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com1tag:blogger.com,1999:blog-16381928.post-31428056349358699512007-11-11T09:59:00.000-05:002007-11-11T10:02:17.098-05:00And some other Lyme storiesOn the theme of Lyme stories, here is a three part series from a news station in Virginia that was very well done. Take a look when you have a few minutes.<br /><br /><a href="http://www.wset.com/news/stories/1107/470355.html">The Lyme Controversy - Part 1</a><br /><a href="http://www.wset.com/news/stories/1107/470683.html">The Lyme Controversy - Part 2</a><br /><a href="http://www.wset.com/news/stories/1107/471065.html">The Lyme Controversy - Part 3</a><br /><br />Yours,<br />Penguini<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/penguin-7947.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-14396242991751063232007-11-11T09:56:00.000-05:002007-11-11T09:59:16.600-05:00Lyme Disease VideoThis is a YouTube video that someone (I'm not sure who) put together about the realities of Lyme disease. Take a few minutes to watch it as it's quite well done.<br /><br />Yours,<br />Penguini<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/penguin3.jpg"><br /><br /><object width="425" height="355"><param name="movie" value="http://www.youtube.com/v/cCB6ezBzSMY&rel=1"></param><param name="wmode" value="transparent"></param><embed src="http://www.youtube.com/v/cCB6ezBzSMY&rel=1" type="application/x-shockwave-flash" wmode="transparent" width="425" height="355"></embed></object>Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-66597437608222287782007-11-04T09:58:00.000-05:002007-11-04T10:04:57.740-05:00What is "normal"?Normal. Normalcy. Normality. However you want to say it, there is a certain connotation behind it. But what is normal? Is there one person somewhere who is considered perfectly “normal” and the rest of us are just measured against them? Or is it about taking the middle slice through a population and coming up with the average and considering that “normal”. Like when it comes to a “normal” body temperature. How many people really have a temperature of 98.6° all the time? I know there is naturally variation among people, but someone draws the “normal” line somewhere and says that is what we should all strive for. Personally, when my temperature gets to the “normal” 98.6°, it’s time for me to keep an eye on it and worry if it climbs higher since my “normal” temperature is about a degree below that.<br /><br />And when it comes to other “normal” things…well, who determines what is considered normal and what is considered abnormal? When it comes down to it, it’s all relative. What is “normal” for me would probably be seen as strange, weird, bizarre, or somehow abnormal in your eyes. For me, normalcy involves being in the medical world and having that on my mind pretty much 24/7 because pills have to be swallowed at certain times of the day, IV infusions have to be scheduled and hooked up on time, shipments of supplies need to be timed so I don’t run out of supplies, refills on medications have to be called in and picked up on time, doctor’s appointments have to be scheduled and gotten to, and so many other medical things that I have to be aware of. And that doesn’t even go into the constant reminders with the symptoms that are there all the time – the fatigue, the joint and muscle pain, the gastrointestinal pain and nausea, the brain fog, and everything else that goes along with these chronic illnesses that I carry around with me all the time.<br /><br />I am sure that for most of you, “normal” doesn’t include carrying around a backpack with portable pumps in them and have tubing coming out from under your shirt and be out and about in the world (or not) while infusing various medications and hydration. And because this isn’t your “normal”, you may be confused and taken aback when you see me (or someone else like me) walking around in the grocery store with this backpack set-up. When I go out with my little backpack, of which I have a very large collection (I just took a count and I have 12 in all but I don’t use all of them, I have a few that are my favorites and the rest are around for other occasions and just to have options), I feel like I get weird looks from people who just don’t know what it’s all for. I’m somewhat self-conscious about it all, but I’ve learned to be grateful for the fact that I can be out at the grocery store while infusing because without the backpack, pumps, and medications I don’t think I’d be able to be doing any of that. I would be stuck at home hooked up to an IV pole or, worse yet, in bed without the precious medications that have kept me alive for the past 10 years (well, not 10 years of IVs, it’s only been just over 5 years since the beginning of my first round of IVs). Instead of being totally embarrassed by the loud sounds my pumps make and having people ask about the sound, I am so grateful to have the pumps in the first place because I know how much more difficult my life would be without them.<br /><br />My idea of what is “normal” is so different from what the…well, “normal” view of “normal” probably is. But is there really a normal view of normal or is that an oxymoron? If there really isn’t just one “normal”, then wouldn’t we each have our own unique idea of what “normal” is? For you, normal may be caring for an ill child, an aging parent or grandparent, having a house full of pets, having to work 2 or 3 jobs to make ends meet, raising children on your own, or learning to deal with a difficult prognosis of this or that disease. So who has a right to say that something is normal or abnormal?<br /><br />Granted, a view of what is normal has a place like in lab work. It’s helpful in that instance to have parameters of normal defined so that you know if things aren’t right for one reason or another and you can try to fix them. But even there, what’s normal for one person isn’t necessarily normal for another person. For example, my alkaline phosphatase (a liver function) is chronically low and we’re not sure why but perhaps that’s what my “normal” is right now and maybe it doesn’t really matter that it’s low, maybe it does. We don’t know everything there is to know about the human body. And with things like blood pressure and cholesterol constantly having their “normal” numbers lowered and lowered, how can someone possibly seek to be within the parameters of “normal” that are being redefined on a regular basis? I know that my blood pressure is good when it’s 120/80 but that is now considered prehypertension whereas it used to be the normal value that everyone should strive for. When my blood pressure goes down to, say 100/65, that’s not good for me and usually it means I’m not feeling great. But the problem is, many doctors (and nurses and just regular people) don’t take the time to realize that one person’s “normal” is probably different than another person’s “normal”. So if I went to a new doctor’s office and they took my temperature and it was 99.0°, they probably wouldn’t think much of it but I would know that it’s bordering on a real fever.<br /><br />I think I’ve strayed from what I was trying to focus on. It’s not about those medical values of blood tests, temperature, blood pressure, etc. It’s about what we consider “normal” in our day to day lives and how they are so different from one person to the next. It’s hard to get weird looks while at a store with my little backpack and tubing coming out from underneath my shirt. It’s hard to get funny looks when I have to park in a handicapped space because I don’t look handicapped. But the truth of the matter is that no one knows what is going on within anyone else. There’s a great quote by Miller Williams that says, "Have compassion for everyone you meet, even if they don't want it. What appears bad manners, an ill temper or cynicism is always a sign of things no ears have heard, no eyes have seen. You do not know what wars are going on down there where the spirit meets the bone." And along with that, who are we to say that our lives are more “normal” than someone else’s? Normalcy is all relative and looking down on someone else for their apparent abnormality and seeing that as a problem just hurts ourselves because we are developing assumptions that shut us off to the world.<br /><br />Seeing the world narrowly in any way cuts us off to experiences that could be valuable and possibly life changing. Just because something is different, doesn’t mean it has to be scary.<br /><br />Yours,<br />Penguini<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/image006.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com2tag:blogger.com,1999:blog-16381928.post-4142666091720511432007-10-24T18:40:00.000-05:002008-12-11T20:53:21.947-05:00The Great American Adventure with a Twist...of Lyme<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i24.photobucket.com/albums/c18/azulskies/E-lover1201.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px;" src="http://i24.photobucket.com/albums/c18/azulskies/E-lover1201.jpg" border="0" alt="" /></a><br />I'm preparing myself to do something big but I don't think I know just how big it's going to end up being. I'm planning a road trip which in and of itself is kind of a big thing, but it takes on a whole new meaning when put in the context of my life. I'm viewing this journey across the country as my way of jumping into life, seeing as much of the country as I can, soaking in everything, and breaking free of the shackles that chronic illness has imposed on me for such a long time. It will be my journey towards taking flight into my life. Not really a life "after" Lyme but a life of living in balance with it, not letting it determine my every move but in no way able to simply put it behind me because it is still so present in my everyday life.<br /><br />And I think it is fitting that I will be beginning the planning of this trip as I approach the decade anniversary of my diagnosis with Lyme disease. On December 28, 1997 (I'm 99% sure that's the specific date) I was officially diagnosed with Lyme disease. I was 15-years-old, a homeschooled sophomore in high school, and I had spent the preceding 3 months leading up to my diagnosis mostly bedridden with debilitating fatigue and a never-ending migraine as well as various other symptoms. And I had spent years prior to that with random symptoms that didn't seem to be associated with anything, that just simply seemed to pop up here and there and disappear as mysteriously as they appeared. And I have spent the almost ten years since then on the roller coaster ride that is chronic illness. I don’t know how many days I've spent traveling to doctor's appointments, how many hours I've spent hooked up to IVs, how many tests I've had done, how many vials of blood I've had taken, how many doctors I've seen in total, and how many various diagnosis (both correct and incorrect) I've been given. But none of those specifics really matter.<br /><br />What matters is that I am here, still here and living my life in ways that I didn't really think was possible even just a year ago. There were times in the past ten years where it seemed I would be stuck in that dark hell forever, that I would never find the right doctor, get the right medications, get those right medications covered by insurance so I could actually <i>get</i> them, and slowly begin to climb out of that hell. And many times when it seemed I was finally finding my way upwards towards improvement only to slip or stumble and slide back down. It really is a slippery slope and there are no guarantees that recovery will last and really no telling when a downward slide will happen or what might bring it on. Now I have climbed out enough so that I can kind of straddle the medical world and the "real" world – that illusive world where people get up in the morning and go to work; where people are able to pay for their own apartment rent, food, gas, and other necessities with minimal help from others; that world where doctor's appointments are scheduled around life rather than the other way around. But I never forget what a slippery slope it is and find myself terrified of the thought of a downward slide but at the same time afraid to get too used to this more "normal" life because it feels like it can't last forever.<br /><br />I still have these daily reminders of being sick. I'm hooked up to IVs many hours of the day, I swallow dozens of pills a day, I have doctor's appointments at least every other week and visit my PCP's office weekly for various treatments, and I always have this voice in my head that reminds me to take it easy and figure out ways to conserve energy and do the best I can for myself. But I am here. That must be a testament to something. Because there were times when I really didn't know what would happen and just making it through a day was an accomplishment. Well, now just making it through a day is an accomplishment but not just because I continue breathing in and out and can eat enough to stay alive but because I survive 21 active 4-year-olds, teach theater classes, stay active in my church through choir and classes, am literally days from officially graduating from college (a long 7+ year process), and I am managing it all the best I can.<br /><br />So, back to what this was supposed to be about, this road trip I am planning. It started out as simply a trip to go see the country a little more and make it out to visit my sister and brother-in-law during my month off of work in June. I was making a mental list of the places I wanted to stop and see – make a stop in Tennessee to visit friends, see Sedona in Arizona, see the other big sights of the southwest - the Grand Canyon, the Hoover Dam (which has some meaning going back to high school geometry that perhaps only my family knows about but has a different meaning now – maybe I'll write about that sometime soon) – and a stop at the Johnny Appleseed Restaurant in Virginia (kind of a family tradition). But now the trip is becoming more than just a trip, more than just packing up a car and going to see the country. This is becoming a statement about where my life is going, that I <i>am</i> going...somewhere. I suppose it's truly "A Journey to Somewhere" (if that makes no sense to you, look up at the top of the page). And it has the potential to turn into something else, something that could potentially benefit the Lyme community (or at least specific organizations).<br /><br />My aunt and uncle have helped me think bigger in terms of this trip. Not just think of it as a typical American road trip but think of it as a real accomplishment and adventure. Something I can put a lot of spirit and soul into and really dream big as to what I want it to become. I'm still trying to think up a name for the trip. (Lyme on the Road? Lyme Across the Country? Lyme on Wheels? Lyme Hits the Road? Lots of ideas there.) But the name doesn't matter right now, and even if I don't have a name that's fine. The idea my uncle had was to try to turn this into a fundraising opportunity for a Lyme organization – get sponsors, get donations, have people be able to track my progress and experience my adventures in some way. And the more I think about this the more I love the idea, the more I want this to become a big thing and to have it be about more than just me seeing the country. There are so many other Lyme patients who are not able to do this kind of trip for one reason or another – physical constraints, financial constraints, etc. – and I would love for my trip to be a way for <i>them</i> (and maybe this applies to <i>you</i>) to see the country, to experience it with me.<br /><br />So there it is, a big adventure in the works and something that could be...transformational. It's so open to possibilities and I can’t wait to get started planning it!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwaN3_pZNz0TmCEpf41OlzgqLUxYg9onq2Mrg0_s3p123kNke3_BkTHaxtfD5mAP-Mi-gpiKw3NX_SxQk10E8-7zWJ88nPM54EcPIer03ajLrgR5l0KfQabBgno27c5VFZ23J-dA/s1600-h/2005_0116Oregon0044.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwaN3_pZNz0TmCEpf41OlzgqLUxYg9onq2Mrg0_s3p123kNke3_BkTHaxtfD5mAP-Mi-gpiKw3NX_SxQk10E8-7zWJ88nPM54EcPIer03ajLrgR5l0KfQabBgno27c5VFZ23J-dA/s320/2005_0116Oregon0044.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5125054909023028162" /></a><br /><br />Yours,<br />Penguini<br /><br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/penguin.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com1tag:blogger.com,1999:blog-16381928.post-50821348148696007922007-10-06T13:44:00.000-05:002007-10-08T13:50:08.081-05:00What do I want with my life?What do I want with my life? A big question and one that certainly doesn’t have a simple answer. My mind is generally very active, there are always things flying around in it and I’m constantly thinking of things I should write about. Because for me thoughts don’t continue through to their end until unless I’m writing the words down because my busy head will without a doubt find something to throw right in the middle of the thought line to throw me off onto some other topic and forget about what I was trying to think through. And of course writing things down makes it more real, makes it last longer and allows me to really think and go back over it and think about it some more.<br /><br />So what do I want with my life? I guess the easy answer, if there is one, is that I want love and lots of laughter. I want it to have meaning and I want to know that meaning deep down inside, feel it down to my toes, love what I do and do what I love, have passion for something big, follow my dreams, and be surrounded by people who know me, love me, and have their own passions. Life isn’t easy and I have no expectations of anything being easy. Maybe I have been through more than I ought to have to go through. But who are we to question whose experiences are fairer? How can we possibly say that one person’s life is more unfair than someone else’s life? But now I’m getting off topic here.<br /><br />What do I want with my life? I want to write. I want to write freely, with pure abandon and no fear of other people reading what I write because it might not be good enough. I want people to read what I write because maybe there’s something in the words I put down. Maybe there isn’t. But that doesn’t matter. When I write my voice grows stronger and I find myself a little bit more with every letter, word, sentence, paragraph, page. I want to write a book about my life. Maybe it’s not a book anyone else will want to read, but it’s something I feel deep down that I must do. It’s not a question of if I want to do it or not, it’s just something that is essential to my soul.<br /><br />What do I want with my life? I want more smiles than tears. But if I can’t have more smiles than tears, I want the tears to taste sweet on my lips and relieve whatever pain has caused them. And sometimes the best times are filled with tears that lead to laughter or the other way around. Sometimes things are so beautiful that they make you cry. And sometimes they are so awful that you can’t do anything else but laugh. The laughter is so important. Even in the darkest times, laughter can bring a spark that has the ability to light up the whole room and let you forget about all the awful things for a while.<br /><br />What do I want with my life? I want love. I know I said that already, but it’s worth repeating because what can be more wonderful than love? I want to be in love but not make that love the center of my life, but rather the grounding that helps me find myself when I feel lost. I want a love that will make me feel safe and secure, accepted, good enough just as I am with no pressure to change to something else unless that is where my life is taking me.<br /><br />What do I want with my life? I could venture off into the unrealistic, the dreams rather than the real-life hopes. And why not go off there, this is my writing from my head so I can go wherever I want I guess. I want to be well. I want to be able to throw away all the pills and IVs and make this lump of a port-a-cath in my chest disappear. I want to be able to jump in a lake without worrying about IV line infections. I want to be free to take a shower anytime I feel like it without careful planning around IV schedules. I want to spend my weekends out enjoying the world instead of recovering from the stress and strain of the week. I want to be able to put food in my mouth without worrying about the pain and nausea that I know will come all too soon. I want to throw my IV pole out the window and fill my room up with bookshelves full of great literature that I actually have a hope of reading (and understanding) instead of having organizers lining the walls with bags of IV medications, needles, and all the other supplies that have become my baggage. I want all of this, but I don’t expect it to happen so I will only write it here for the sake of writing it. And who knows, maybe some of it will be true…someday.<br /><br />What do I want with my life? I want to sing loud and clear and have my voice carry to whoever needs to hear it. I want to feel the notes rising up from my toes and stream out of my throat with the kind of purity that only happens on rare occasions. I want to feel a connection with the divine in so many ways – through song, through writing, through nature. I want to watch the waves crash on the shore and watch so many sunsets that it’s all I can see when I close my eyes. I want to sit by the ocean and feel a part of everything, even if it’s just to feel like a speck in the universe. Even a speck is part of everything. I want to watch the stars come out after the sun sets and hear anything they might have to say to me. I want to look for fairies and feel angels around me.<br /><br />What do I want with my life? I don’t know if any of this answers that question or just raises more questions. It’s such a jumble of everything that I can never know if it makes much sense at all but it’s there, it’s written down so that maybe my head can think of it as done and make room for more, different thoughts. Or maybe this is just the tip of the iceberg. Maybe this is nothing compared to all that is within me. I don’t know, and maybe I’ll never know for sure. But maybe this raises the question of what YOU want with your life? Are you doing what you want to be doing? And if not, why aren’t you? There may be a lot of time left to do all the things you want to do, but what if there isn’t? What if your time is more finite than you think it is and you are spending your time putting things off until tomorrow, or next month, or next year? Grab the moment and do what you feel you need to do. And always remember that sometimes the thing you need to do and the thing you think you want to do aren’t the same thing.<br /><br />Yours,<br />Penguini<br /><br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/1383258665.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com1tag:blogger.com,1999:blog-16381928.post-49199341202470637172007-10-05T16:51:00.000-05:002007-10-05T16:55:17.728-05:00Pretty Upset - Quizno's CommercialOkay, this may end up being a little ranty but there is just something I need to blog about in a little different way than I usually do (which is more creative writing than ranting and "normal" blogging). Have any of you seen the new Quizno's commercial for their chicken carbonara sandwich? The one that has the guy hooked up to an IV because he's "done with eating, it's just not worth it anymore" and then he is talked into trying the new sandwich? If you haven't, you can see it <a href="http://www.quiznos.com/menu/sub_chickencarb.asp">here</a> (you need quicktime or windows media player to view it). Now I have to say most people probably just watch the commercial, maybe chuckle at it, think the sandwich looks really good, and go on with their day. But from the first time I saw this commercial, I've been disgusted by it. And what has prompted me to write this is that I have found other people who are disgusted by it, too, and I needed to write/rant about it a little.<br /><br />I hope all of you out there see the insensitivity of this commercial now that I have pointed it out. I find it very offensive and disrespectful as someone who relies on IV hydration, as someone who has many friends who are on or have been on TPN (IV nutrition) because they cannot eat enough or at all, as someone who knows how awful and difficult it is to deal with gastrointestinal problems that leave you facing the prospect of relying on IV nutrition (although I never did end up going on it, first because of insurance issues and then because I was able to get on treatment for my gastroparesis and started being able to eat a little better). How can a company think this is something that people should watch and laugh at? I know, there is insensitivity everywhere - TV, commercials, movies, music are disrespectful towards this group or that group all the time and no one says anything. But I think that's a big problem. If no one says anything, then people will continue to think it's okay to make a joke at the expense of one group or another.<br /><br />So today I wrote to Quizno's (along with a lot of other people, as I found out from some of the groups I belong to) calling them on the commercial's insensitive nature. Who knows if anything will come of it, but maybe if enough people write to them something will happen. If you're so inclined, you can write something to them on their website <a href="http://www.quiznos.com/contact.asp">here</a>.<br /><br />Okay, so maybe this isn't as ranty as I thought it was going to be. I just don't understand how people can take something as serious as needing IVs to survive and turn it into a joke and a way to sell sandwiches! I'm all for comedy in advertisements, but there is no need to go in this direction. There are plenty of funny commercials that don't poke fun in this kind of way. I know there is no one out there who wants to rely on IVs to survive, but it is a reality for too many people. If it were a matter of choosing to eat or not to eat...I don't even know how I want to finish that sentence, I really am just getting myself more upset about the whole thing when this was supposed to help relieve some of those feelings so I'll stop here. Please, if you have any inkling to write an e-mail or a letter to Quizno's, do it.<br /><br />Oh, and I just realized that many of you may not know the details of my medical situation (although I'm sure most of you know enough for this post to make sense), here's the short version. I have <a href="http://www.autoimmunityresearch.org/lyme-disease/">chronic Lyme disease</a>, <a href="http://dynakids.org/what.jsp">dysautonomia</a>, <a href="http://www.g-pact.org/gpinfo.htm">gastroparesis</a>, and a handful of other medical conditions. Everything is probably as a result of the Lyme disease in one way or another. The dysautonomia causes my blood pressure to drop dangerously low and because medications failed to help I rely on daily IV hydration to keep it in check and keep me as stable as possible. I also receive IV vitamins and minerals in my hydration everyday and I infuse IV amino acids every night to help my overall nutritional status because I am malnourished from being unable to eat well because of the gastroparesis. I am unable to eat very much at a time, I rely on numerous medications multiple times a day to keep my stomach working as well as possible but I still experience symptoms, sometimes severe, including nausea, abdominal pain, severe reflux, and occasionally vomiting. I came close to being put on TPN (IV nutrition) in the winter/spring of 2006 when I had a severe gastrointestinal crash which made it impossible for me to eat more than a few hundred calories a day and I was rapidly losing weight. I have since gained back the weight and stabilized although I still am unable to get enough balanced nutrition in my diet and require a lot of help from IV medications, fluids, and oral medications and supplements. If you'd like to read more about my story and day-to-day medical life, feel free to visit <a href="http://www.caringbridge.org/ma/annielyme">my Caringbridge page</a>.<br /><br />Yours,<br />Penguini<br /><br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/penguin_dreams.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com3tag:blogger.com,1999:blog-16381928.post-62212222044630810372007-08-31T12:10:00.000-05:002007-09-11T18:45:05.951-05:00Straddling Two WorldsThere are times when I feel so separate from this place, these people, the world I see all around me. I feel like a floating soul. Not really of this world or in it. I feel different, somehow separated for reasons I can't quite think of. I feel like people look at me while I'm walking down the street or just sitting somewhere out of the way. What are they looking at? What do they see? Or is this staring just in my head? I feel like people look at me but at the same time I feel like no one sees me. I'm not memorable, nothing special, easy to overlook.<br /><br />I want to leave a mark, but not leave behind damage. My baggage grows as I go through life and I don't want it to crush anything as I venture forward. If I am not really a part of this world, can I really leave a mark? It would probably be easier to go through life unseen by others, trying to be sure not to do anything to rock the boat. But in the end, easy doesn't really matter much if your life has no meaning.<br /><br />It's the end of the summer, the end of vacation (well, almost) and I have these new adventures before me waiting so close to be started. And with all these changes I can't help but look behind me at what I've been through (non-medically speaking here) and think ahead to what kind of future I want to create for myself. I'm trying so hard not to really plan far in advance because things can change at the drop of a hat and expectations can unintentionally lead to closed doors. I don't want to close doors before I've even opened them. I don't want to be so fixated on a point somewhere in the future, a point I just want to get to, and miss out on things that cross my path.<br /><br />I keep thinking ahead to what I'll do...then, after this or that is done. I'm thinking about next summer without really thinking about the whole school year between now and then. I'm trying to decide now where I want to live next year without knowing what may change, or how <b>I</b> may change, in the upcoming year. I feel like life is flying at me all of a sudden filled with opportunities and after living such a long time with so few options and choices, I want to have a chance to taste it all. I want to live where my heart is pulling me and I don't want to waste time between now and then. All these options, all these doors, and I end up either getting stuck on heading towards just one so fast that I lose sight of everything else or I stand there thinking about all the options so long that I never head towards any of them. And I don't know which way is better - gut-reaction or careful consideration. Both have their pros and cons, but if I spend time considering which way of deciding is better, I'll see even more time pass me by.<br /><br />I guess the thing (or one of them anyway) is that I've spent such a long time on the sidelines of life and suddenly I'm entering the world, staring around at everything and not sure how to really join the "real" world but at the same time wanting to be a part of it all at once. But I still feel so much like a spectator, just an onlooker rather than an active participant in the world. When I imagine my life in any of the places I can see myself living, I see myself as a kind of ghost, a shadow, an onlooker just observing everyone else going about living their lives. And part of me is happy doing that. But part of me yearns and aches to be a part of it, but I don't know how. How do you suddenly know how to live a kind of life you've never been able to live before? How can I expect to take that leap and instinctively know what to do without tripping or faltering at times?<br /><br />And part of it has to do with these different worlds I inhabit - "medical" and "real", not that the "medical" world is any less real than the "real" world, but it's more...<i>sur</i>real and just...different. These worlds are so different and I have been living mostly in the "medical" world for the past 10 years and especially in the past 3 or so years. Now I feel like I'm trying to straddle the two worlds, attempting to take some steps into the "real" world but not quite knowing how well I can balance with one foot still in the "medical" world (and sometimes more than just a foot). And how do I explain my past 10 years of existence mainly in the "medical" world to people in the "real" world? They can hear what I say, maybe sympathize with all I've been through, perhaps give me (unwanted) pity, but in the end they have no idea how it feels to look back at 10 years of life and feel like they were a blur and that they were years where, for me, the world stood still and I just watched as everyone around me kept living their lives and i was mostly just concerned with <b>living</b>, making it from day to day.<br /><br />It's strange thinking about it all like this, imagining myself with one foot in the "medical" box and one foot in the "real world" box and trying to move forward like that. I do believe I can do it, that I can find the balance somewhere in there and manage to not go tumbling down to the ground, tripping over the two boxes, and end up with both feet back in the "medical" world. But it takes so much more effort and planning to try to achieve that balance. Strict bedtimes, strict schedules of infusions and medications (which are hard to sneak in while at work - pills, not infusions), trying to settle into a new home and have the energy to unpack and decorate without taking away from the energy needed for the more essential things, trying hard to eat as well as possible. It's exhausting just thinking of all the planning that has to go into trying to live this "normal" life and in the end, all the planning in the world can't stop a crash from coming. I feel in some ways like I'm the square peg trying to fit into the round hole. I'm this person who has all this medical baggage trying to squeeze through the door into that "real" world and it seems like some of my medical baggage is keeping me stuck in the doorway, unable to fully enter that "real" world.<br /><br />Just some rambling thoughts on my "new" life. Maybe there's something in them, maybe there isn't. But that's the great thing about writing - even if you write and write and write and nothing good comes out, you can still keep writing and writing until you get to where you need to get.<br /><br />Yours,<br />Penguini<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/penguinhearts.jpg">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-89657647068413789312007-08-03T19:28:00.000-05:002007-08-03T19:33:51.198-05:00Graduation! Oh, the Places You'll Go!(For my big graduation update, see <a href="http://www.caringbridge.org/ma/annielyme">my Caringbridge page</a>.)<br /><br /><b><i><font size=3>Oh, the Places You'll Go!</font><font size=2></i></b><br />by Dr. Seuss<br /><br />Congratulations!<br />Today is your day.<br />You're off to Great Places!<br />You're off and away!<br /><br />You have brains in your head.<br />You have feet in your shoes<br />You can steer yourself<br />any direction you choose.<br />You're on your own. And you know what you know.<br />And YOU are the guy who'll decide where to go.<br /><br />You'll look up and down streets. Look 'em over with care.<br />About some you will say, "I don't choose to go there."<br />With your head full of brains and your shoes full of feet,<br />you're too smart to go down any not-so-good street.<br /><br />And you may not find any<br />you'll want to go down.<br />In that case, of course,<br />you'll head straight out of town.<br /><br />It's opener there<br />in the wide open air.<br /><br />Out there things can happen<br />and frequently do<br />to people as brainy<br />and footsy as you.<br /><br />And when things start to happen,<br />don't worry. Don't stew.<br />Just go right along.<br />You'll start happening too.<br /><br />OH!<br />THE PLACES YOU'LL GO!<br /><br />You'll be on your way up!<br />You'll be seeing great sights!<br />You'll join the high fliers<br />who soar to high heights.<br /><br />You won't lag behind, because you'll have the speed.<br />You'll pass the whole gang and you'll soon take the lead.<br />Wherever you fly, you'll be the best of the best.<br />Wherever you go, you will top all the rest.<br /><br />Except when you don't<br />Because, sometimes, you won't.<br /><br />I'm sorry to say so<br />but, sadly, it's true<br />and Hang-ups<br />can happen to you.<br /><br />You can get all hung up<br />in a prickle-ly perch.<br />And your gang will fly on.<br />You'll be left in a Lurch.<br /><br />You'll come down from the Lurch<br />with an unpleasant bump.<br />And the chances are, then,<br />that you'll be in a Slump.<br /><br />And when you're in a Slump,<br />you're not in for much fun.<br />Un-slumping yourself<br />is not easily done.<br /><br />You will come to a place where the streets are not marked.<br />Some windows are lighted. But mostly they're darked.<br />A place you could sprain both your elbow and chin!<br />Do you dare to stay out? Do you dare to go in?<br />How much can you lose? How much can you win?<br /><br />And IF you go in, should you turn left or right...<br />or right-and-three-quarters? Or, maybe, not quite?<br />Or go around back and sneak in from behind?<br />Simple it's not, I'm afraid you will find,<br />for a mind-maker-upper to make up his mind.<br /><br />You can get so confused<br />that you'll start in to race<br />down long wiggled roads at a break-necking pace<br />and grind on for miles across weirdish wild space,<br />headed, I fear, toward a most useless place.<br />The Waiting Place...<br /><br />...for people just waiting.<br />Waiting for a train to go<br />or a bus to come, or a plane to go<br />or the mail to come, or the rain to go<br />or the phone to ring, or the snow to snow<br />or waiting around for a Yes or a No<br />or waiting for their hair to grow.<br />Everyone is just waiting.<br /><br />Waiting for the fish to bite<br />or waiting for wind to fly a kite<br />or waiting around for Friday night<br />or waiting, perhaps, for their Uncle Jake<br />or a pot to boil, or a Better Break<br />or a string of pearls, or a pair of pants<br />or a wig with curls, or Another Chance.<br />Everyone is just waiting.<br /><br />NO!<br />That's not for you!<br /><br />Somehow you'll escape<br />all that waiting and staying.<br />You'll find the bright places<br />where Boom Bands are playing.<br /><br />With banner flip-flapping,<br />once more you'll ride high!<br />Ready for anything under the sky.<br />Ready because you're that kind of a guy!<br /><br />Oh, the places you'll go! There is fun to be done!<br />There are points to be scored. there are games to be won.<br />And the magical things you can do with that ball<br />will make you the winning-est winner of all.<br />Fame! You'll be famous as famous can be,<br />with the whole wide world watching you win on TV.<br /><br />Except when they don't.<br />Because, sometimes, they won't.<br /><br />I'm afraid that some times<br />you'll play lonely games too.<br />Games you can't win<br />'cause you'll play against you.<br /><br />All Alone!<br />Whether you like it or not,<br />Alone will be something<br />you'll be quite a lot.<br /><br />And when you're alone, there's a very good chance<br />you'll meet things that scare you right out of your pants.<br />There are some, down the road between hither and yon,<br />that can scare you so much you won't want to go on.<br /><br />But on you will go<br />though the weather be foul<br />On you will go<br />though your enemies prowl<br />On you will go<br />though the Hakken-Kraks howl<br />Onward up many<br />a frightening creek,<br />though your arms may get sore<br />and your sneakers may leak.<br /><br />On and on you will hike<br />and I know you'll hike far<br />and face up to your problems<br />whatever they are.<br /><br />You'll get mixed up, of course,<br />as you already know.<br />You'll get mixed up<br />with many strange birds as you go.<br />So be sure when you step.<br />Step with care and great tact<br />and remember that Life's<br />a Great Balancing Act.<br />Just never forget to be dexterous and deft.<br />And never mix up your right foot with your left.<br /><br />And will you succeed?<br />Yes! You will, indeed!<br />(98 and 3/4 percent guaranteed.)<br /><br />KID, YOU'LL MOVE MOUNTAINS!<br /><br />So...<br />be your name Buxbaum or Bixby or Bray<br />or Mordecai Ali Van Allen O'Shea,<br />you're off to Great Places!<br />Today is your day!<br />Your mountain is waiting.<br />So...get on your way!</font><br /><br />Yours,<br />Penguini<br /><img src="http://img.photobucket.com/albums/v456/penguini1982/Penguini/penguin.gif">Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-6735637880422434292007-07-12T13:45:00.000-05:002007-07-12T13:47:57.630-05:00Perfect DayWhat more could I want than this perfect day? Lazy clouds drifting across a pale blue sky, sun blazing down warmth, a cool pond to jump into when the heat brings a need for refreshment. I lie around all day on the dock, bobbing gently with the slow sloshing of the water and occasional big waves from passing motorboats. Gentle breezes rustle the leaves and cool things off just a little bit.Sipping Power Ade , first cool from a bottle with beads of sweat in response to the heat, then warm when the sun’s rays have gazed on it a while. A good book – the kind you didn’t plan on reading but stumbled upon when looking for something to dive into. I got this one (The Poisonwood Bible) at the used bookstore along with a handful of other books, most of which I’ve never heard of. The book has chapters of the perfect length – just long enough for me to get hot and need to cool off in the shimmering water. Spending the day in my bathing suit, the one I’ve had for so many years and just can’t get myself to get rid of because it’s just so familiar and fits just right, although the strap on the top is now held together with a safety pin. <br /><br />Sunglasses. A hat. Power Ade. Salty potato chips (dipped in ketchup). Sunscreen. A good book. Sunshine. A dock on a cool lake. I wish everyday could be like today with such peace and ease. Nothing I have to do but be. Not really lazy but peaceful, serene, and introspective. Warmed by the soft, bright sunshine and cooled by the rippling blue water. Nothing else seems to matter but this moment.<br />--June 26, 2007Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0tag:blogger.com,1999:blog-16381928.post-13532409047972555792007-07-12T13:44:00.001-05:002007-07-12T13:44:47.555-05:00ScarsI have my share of scars.<br />I’ve been cut, burned, broken.<br />I’ve bled as you have bled.<br />My scars are the witness<br />To my strength,<br />My perseverance,<br />The courage I possess.<br />Each scar reminds me to push through<br />Because I’ve already been through so much.<br />Life gets messy when you live it right.<br />There’s never an easy fix<br />And if it seems like there is one<br />It’s probably the wrong choice to make.<br />Healing is hard<br />And scars mark us.<br />But we are not wounded<br />Unless we just sit around and lick our wounds.<br />We are not victims<br />Unless we see ourselves as helpless.<br />We are survivors.<br />I am a survivor.<br />Strong.<br />Courageous.<br />Free to create my life!<br />--June 1, 2007Penguinihttp://www.blogger.com/profile/11992956460358201753noreply@blogger.com0