tag:blogger.com,1999:blog-18200716681417925372024-03-13T22:57:35.359-07:00Melissa's BlogspotMelissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.comBlogger145125tag:blogger.com,1999:blog-1820071668141792537.post-80221719238356798132023-04-23T06:45:00.004-07:002023-04-23T06:45:44.869-07:00FROM THE OUTSIDE LOOKING IN<div style="text-align: left;">To you on the outside looking in,<br />Whose baseless judgment knows no end,<br />Who pretend to know enough to comprehend<br />Our pain and suffering, the depths to which we’ve been,<br /> <br />You who shake your heads at our great disgrace,<br />You with lashing tongues that diminish and abase,<br />From your lofty, healthy, pristine place,<br />Spout venom dressed up in trite cliches.<br /> <br />“A thing to behold, a blessing in disguise,”<br />So preach the saintly, the philosophers, and the wise,<br />As if our cruel illness could have an upside,<br />As if we’ve been granted some “soul-perfecting” prize.<br /> <br />You wield your “positivity” as if it’s a club,<br />“Chin up! Don’t you know you must overcome?”<br />No compassion, no mercy, no warmth, and no love,<br />Bludgeon my poor spirit till it grows cold and numb.<br /> <br />But when you’re the one who is trapped deep inside,<br />Inhabiting the world of the forgotten and cast aside,<br />Where from your brutal fate there is nowhere to hide,<br />Where your agony and misery cannot be denied,<br /> <br />The view appears somewhat different to you,<br />Murkier, muddier, and harder to see through,<br />Not the land of the living the others cling to,<br />The luscious world of wonder that you once knew.<br /> <br />We reach for a hand that might lift us up,<br />For an extended invitation to the joyous world above,<br />But rather than sweet grace, you offer only rebuff,<br />No matter our efforts, we are never good enough.<br /> <br />Ms. Sunshine, Mr. Righteous, I implore you to see<br />That your patronizing speeches and harsh enquiries<br />Serve only to punish, belittle, and demean;<br />They do nothing to cheer, inspire, or set free.<br /> <br />For we live in darkness, and every day is a chore,<br />Our spirits are dampened, and our bodies are at war.<br />We can’t readily accomplish what we were able to before,<br />Takes more time and great effort to replenish and restore.<br /> <br />What you see as simple and command that we do,<br />Is much harder for us, though we try to push through.<br />We are weak and depleted, gone the strength we once knew,<br />And every day as we waken, we start the battle anew,<br /> <br />We fight to move forward through tribulations and trials,<br />As survival consumes us and our lives pass us by,<br />We search to find meaning, know our lives are worthwhile,<br />It’s not as easy as it sounds to greet this all with a smile.<br /> <br />We daily face hardships you will never understand,<br />And must live within the limits our illnesses demand,<br />So, your calls to “greatness” and “helpful” reprimands,<br />Mean little, as we’re already doing the best that we can.<br /> <br />If you truly wish to help us, then bend down on your knees,<br />Pray for our healing, our comfort, our relief,<br />Acknowledge our struggles and offer blessings and peace,<br />Live among us, walk beside us, see our hearts, share our grief.<br /> <br />The barrier between us that wounds and divides,<br />Must fall away, and you must come inside.<br />Come down from the mountain, set your judgments aside,<br />Lovingly embrace us and try to see us through our eyes.<br /> <br />Your wagging tongues you must silence and control,<br />For you are called to comfort and not just to scold.<br />Inside, we need understanding and warm hands to hold,<br />Gentle spirits that nurture, loving arms that enfold.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglfqCaS7VTWW3qUnjmo69iSJ42O7JIc3ghf8JWHa0FFHY7AK6Q4vZ2v6pDmFACm3R1Ms-4gTXMVODcuUS3zz7vVQI4UsVoB0L3E6BXjCA6yHZjdDXeVZU4p5aP8iULxHefza7ny6HP1487q-kTztB42Xc7s0BbtfcOcCo0QdLb9ph9CSX35j37xQnqRw/s940/From%20the%20Outside%20Looking%20In.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglfqCaS7VTWW3qUnjmo69iSJ42O7JIc3ghf8JWHa0FFHY7AK6Q4vZ2v6pDmFACm3R1Ms-4gTXMVODcuUS3zz7vVQI4UsVoB0L3E6BXjCA6yHZjdDXeVZU4p5aP8iULxHefza7ny6HP1487q-kTztB42Xc7s0BbtfcOcCo0QdLb9ph9CSX35j37xQnqRw/w400-h335/From%20the%20Outside%20Looking%20In.png" width="400" /></a></div><br /><div style="text-align: left;"><br /></div>
Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-65594336059272430512023-02-23T12:50:00.001-08:002023-02-23T12:50:38.309-08:00"Coping" with the Pain<p>This morning, I was thinking about (and fuming over) an article I read a few years ago in which a physician commented that we are a society lacking coping skills, a people seeking "quick fixes" for our pain, one that needs to acknowledge that "suffering is part of life." He was lamenting the fact that patients came to him seeking pain-relieving medications (opioids, to be precise). His tone was mocking, condescending, and completely void of empathy or compassion, and I immediately thought to myself, "I wonder how he would feel if he lived with Gastroparesis for a spell?"</p><p>Now, I would wish this illness on no one, of course, but I am guessing the good doctor has never experienced the sort of chronic pain that I and so many in our Gastroparesis community daily endure. Perhaps I should grace him with the details...</p><p>My pain is overwhelming, send-me-to-my-knees, curl-up-in-a-ball, beg-for-mercy suffering for which no level of coping skills can prepare one. It is daily, ever-present, a physical and mental torture that confines me to my home, tethers me to a heating pad, stains my cheeks with tears, and transforms me into a raging, agonized beast who would give almost anything to rid herself of it.</p><p>It impedes sleep, and when (if) rest finally comes, it awakens me again in the nighttime. It haunts and taunts me with the knowledge that no matter how well I battled it today, it will be back again the next morning for another round -- perhaps stronger than the day before. Mentally, emotionally, and physically, it alters my being, changes who I am, and wears on me until I believe I can bear no more. And, yet, I must. I have no choice. It comes. I cannot will it away, wish it away, or pray it away. At best, I can lessen it to the point where I can function in some minimal fashion, but it will not be ignored nor placed on a back-burner. And it does not end. Ever.</p><p>So I take issue, O Wise Healer, with your suggestion that I have no coping skills and seek, instead, a "quick fix" to all of life's problems. Suffering is, indeed, a part of life, but I would wager that my suffering and that of many in my GP and chronic pain communities is nothing akin to what you have experienced. And after more than nine years of this torturous life, I am well aware there is no simple solution, no easy, consequence-free choice. But would a moment of relief, one serene, carefree, beautiful, blissful moment free from this pain be too much to ask, to expect? You hold the power to provide that, and yet you chastise us for desiring it.</p><p>I should probably clarify that I do not now, nor have I ever, used opioids. That's right, I have chosen to endure the "discomfort," as the article's author so blithely labels my suffering. But I do not make this choice lightly, and there are many days I yearn to take a different path. Many in my community do take that road. They turn to opioids (or other pain medications) because, without them, there simply is no quality of life. They cannot function in the most basic ways. They desire some small measure of comfort in a world of chronic illness where there is little.</p><p>Good Doctor, you think yourself so wise and strong because you have been blessed with a nearly pain-free, healthy existence. But take a moment to consider the "lessers" before you pass your profound judgment upon us, and, perhaps, view us from an alternate perspective -- one of compassion and empathy, free from judgment and assumptions about our motives and our abilities to "cope." We know a struggle few will ever experience.</p><p>Should we not have a voice in our care, in the path we walk? Patients are disregarded, ignored, imprisoned by pain, devoid of options... and this is unforgivable.</p><p>No, Good Doctor, I do not need any further instruction on how to endure pain. I am a trooper, a master of "overcoming," who is quite capable of "coping with" and "managing" pain; I am simply tired of having to do it! I want relief, an end to this madness. I want a cure.</p><p>Why is that so difficult to understand?</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheAXyz7jDC4YIUhwiDfqgAQQidOOEFrkc1V6v2aQd7biMdAbnbc6WUpi0R69HZn1vIHQdC0p7LCfjAXV8ZUNWevLpnhoJdcNhdcABwuJH3e8Zbw4P_ycv7x4GehWXhHi6cfCWwY60yR367oGADD-rzV0w0utlKaULb_MBQldm_H0bLJ0IKyzPkRnJBQw/s940/We%20are%20starving%20for%20peace%20and%20healing,%20For%20relief%20from%20all%20this%20pain,%20And%20we%20would%20give%20almost%20anything%20To%20savor%20one%20more%20%E2%80%9Cnormal%E2%80%9D%20day..png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheAXyz7jDC4YIUhwiDfqgAQQidOOEFrkc1V6v2aQd7biMdAbnbc6WUpi0R69HZn1vIHQdC0p7LCfjAXV8ZUNWevLpnhoJdcNhdcABwuJH3e8Zbw4P_ycv7x4GehWXhHi6cfCWwY60yR367oGADD-rzV0w0utlKaULb_MBQldm_H0bLJ0IKyzPkRnJBQw/w400-h335/We%20are%20starving%20for%20peace%20and%20healing,%20For%20relief%20from%20all%20this%20pain,%20And%20we%20would%20give%20almost%20anything%20To%20savor%20one%20more%20%E2%80%9Cnormal%E2%80%9D%20day..png" width="400" /></a></div><br /><p><br /></p>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-44769659287791468102023-01-12T11:07:00.000-08:002023-01-12T11:07:03.438-08:00NORMAL<div style="text-align: left;"><div style="text-align: left;">What is normal?<br />Yours or mine?<br />Crossed the boundary,<br />Never saw the warning sign.<br /><br />To a world of madness,<br />That fluid fine line,<br />Now etched in permanence,<br />No exit to find.<br /><br />Seizes your indulgences,<br />And all you hold dear,<br />From dawn into night,<br />Fraught with anger and fear.<br /><br />Dreams and ambitions?<br />You won’t find them here.<br />Just crushing, dull numbness,<br />Behind the decorative veneer.<br /><br />“New normal” they declare,<br />As if that’s something to behold,<br />But the memories, the good times…<br />I prefer the old.<br /><br />They have no real answers,<br />But might keep you alive,<br />You might languish and struggle,<br />But don’t expect to thrive.<br /><br />They have Band-Aids and tubes,<br />A whole chest of survive,<br />But the full life, the whole,<br />Cannot be revived.<br /><br />Reduced to a photo,<br />A face on a screen,<br />Neither dead nor living,<br />But somewhere in between.<br /><br />Well, that just won’t cut it,<br />This side of the line,<br />No thank you to compromise,<br />I want back my life!<br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnh_vfiA3tgWcB55LaBeJiKjsBX-rHzK0Mkh0blE4A8YzqyLJ2dUAfLCBM-zVhznD0QV3ni7ITW-Si2XtWkseNm4l9CwUH_HTHC_G9WpHbh68AAdQ5FpNq8U2oOKucH1IqSBvGEIX655mNG0X-gE_mSpcTPDjItkr0jegY1ZQed_7GYfQKkkPS-VHLnA/s940/Normal.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnh_vfiA3tgWcB55LaBeJiKjsBX-rHzK0Mkh0blE4A8YzqyLJ2dUAfLCBM-zVhznD0QV3ni7ITW-Si2XtWkseNm4l9CwUH_HTHC_G9WpHbh68AAdQ5FpNq8U2oOKucH1IqSBvGEIX655mNG0X-gE_mSpcTPDjItkr0jegY1ZQed_7GYfQKkkPS-VHLnA/w400-h335/Normal.png" width="400" /></a></div><br /><div style="text-align: left;"><br /></div></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-60662847225035279482022-12-08T10:47:00.002-08:002022-12-08T10:47:38.608-08:00Preconceived Notions Surrounding Social Media Groups<span style="font-family: arial;">Far too many people have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions within them. In short, our groups too often get a "bad rap" that is neither deserved nor true.<br /><br />Our Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. Many of our members have no other place to do so, as their families and friends dismiss and refuse to believe their struggle. The groups, then, are the one place where members feel understood and accepted. And far from being mere "gripe sessions," such posts might better be viewed as self-care and self-help, as they attempt to put into words the feelings that weigh heavy on the hearts of our members, who seek acknowledgment, compassion, and, sometimes, advice for moving forward.<br /><br />The groups are not merely boards for "bashing" physicians, either, although that does occur. It can be difficult to find doctors who are both knowledgeable of the life-altering effects of GP and who care about the overall well-being of their patients. In addition, sharing bad experiences often generates discussions about how to better communicate with physicians and how to advocate for assistance, affords members the opportunity to suggest possible remedies to obstacles and problematic interactions, and flashes a warning sign about healthcare providers who consistently under-serve their patients.<br /><br />Further, the groups are not hosts of misinformation, although we do combat that. By permitting members to ask questions, wonder aloud, and speak freely (or, at least, as freely as Facebook permits), we offer rational explanations, discuss research and information from credible sources, and share personal experiences and perspectives. We offer and flesh out what is accurate and inaccurate, what is helpful and harmful, and what is perhaps worth pursuing or dismissing.<br /><br />And, finally, the groups are not "negative" pits of despair, although we see many who have been dismissed, mistreated, beaten down, and lack hope. We combat this by offering listening ears, helping hands, and understanding hearts. We would rather our members be outspoken about their worries, fears, and sense of hopelessness than hide their pain and suffer in silence. If we do not know, then we cannot help. We hear the cries that others have ignored and give voice to the pain so that "healing" can begin. But we also share uplifting stories, small and large "successes," and moments of overcoming. We hear of weddings, births, graduations, successful treatments, good days, and reconnections with families and friends. We express both despair and hope, as is the case with nearly all humans. We laugh, cry, commiserate, pray, and wish well.<br /><br />In short, our groups are sources of physical, emotional, mental, social, and spiritual support. They are the center of information-sharing and advocacy efforts. They are our best attempt at getting out accurate information regarding the causes, effects, and available treatments and resources for our illness. They are a one-stop shop where we treat the person as a whole and not simply as a diagnosis. They are self-help and education communities. They are the light at the end of a sometimes very dark tunnel and a source of encouragement and hope for those who the medical system and families and friends have failed. They are "home" to both those who are isolated and lack basic knowledge and support and to those who wish to offer such knowledge and support.<br /><br />And, so, I challenge and encourage healthcare professionals, researchers, legislators, the media, pharmaceutical and insurance companies, loved ones, and the general public to lose their preconceived notions and open their eyes to the benefits of social media-based support communities. We are so much more than you have imagined.</span><div><span style="font-family: arial;"><br /></span></div><div><span style="font-family: arial;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEi7xWydd44nREa6YFl1k4iB1_u2pMhOEt1fxQYB9nT_sVhRpwpwnjl8Ez2w6PtJT__x24oVEeigSgdMGWShEJ_Ld0RYDmqFQ_bDI6XzIuvsWqaHUkYgvqjG_ZCKYJKAXVn8HpdCPU9OqqPWxJtKBrEp97nKokI0vXVfYiBhz8y9F_dE7LuhCsx2DC0lgw" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img data-original-height="910" data-original-width="640" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEi7xWydd44nREa6YFl1k4iB1_u2pMhOEt1fxQYB9nT_sVhRpwpwnjl8Ez2w6PtJT__x24oVEeigSgdMGWShEJ_Ld0RYDmqFQ_bDI6XzIuvsWqaHUkYgvqjG_ZCKYJKAXVn8HpdCPU9OqqPWxJtKBrEp97nKokI0vXVfYiBhz8y9F_dE7LuhCsx2DC0lgw=w451-h640" width="451" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><br /><br /></span></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-86917471696262053342022-07-10T12:28:00.001-07:002022-07-10T12:29:14.864-07:00GASTROPARESIS AWARENESS MONTH 2022<p><span style="font-family: arial;"><span style="background-color: white; color: #050505; white-space: pre-wrap;">Every year, Gastroparesis: Fighting for Change supports Gastroparesis awareness by engaging in a themed campaign designed to highlight the issues, needs, and goals of our community. This year’s theme is </span><span style="background-color: white; color: #050505; white-space: pre-wrap;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl gpro0wi8 q66pz984 b1v8xokw" href="https://www.facebook.com/hashtag/gpwontsilenceme?__eep__=6&__cft__[0]=AZU-W1WFBEEi-n7-JpjRnQMuF2jxQ1chNxbs78O95eH6sDQPMr8iLUSxJuCeDG-mV6uQSoUjp82JH8E7iz5bryF2XloUTbCRaIH4Jb3LAFMVm1SmxZBACWJydOa8mGhh9ZVqRGWwIoOK3MvVz1UZJEdnxwUPh4EGLY7ZNKR7WL3hKA&__tn__=*NK-R" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline-block; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0">#GPWontSilenceMe</a></span><span style="background-color: white; color: #050505; white-space: pre-wrap;">.</span></span></p><p><span style="background-color: white; color: #050505; font-family: arial; white-space: pre-wrap;">As part of this effort, I would like to collect photos, quotes, experiences, and/or stories demonstrating what you would like doctors, researchers, legislators, policymakers, the media, and family/friends to know about living with GP and/or discussing the changes we, as a community, need to see.</span></p><p><span style="background-color: white; color: #050505; font-family: arial; white-space: pre-wrap;">This is your chance to speak! The goal is to help the outside world understand that this is more than a tummy ache. They need to see the true effects of GP on your life — physical, mental, social, financial, and spiritual — and they need to know what measures and actions you believe would help.</span></p><p><span style="background-color: white; color: #050505; font-family: arial; white-space: pre-wrap;">To submit, please share your entries at </span><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl gpro0wi8 py34i1dx" href="https://curegp.org/gastroparesis-awareness-month-2022/?fbclid=IwAR1G4_DrZx7ADEGD3HAQY8XS7Bj-96ccDIxcExThuUuLSI6mn_VtT7gPXK0" original_target="https://curegp.org/gastroparesis-awareness-month-2022/?fbclid=iwar1g4_drzx7adegd3haqy8xs7bj-96ccdixcexthuuulsi6mn_vtt7gpxk0" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline-block; font-family: arial; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation; white-space: pre-wrap;" tabindex="0" target="_blank" waprocessedanchor="true" waprocessedid="aakvcb">https://curegp.org/gastroparesis-awareness-month-2022/</a></p><p><span style="background-color: white; color: #050505; font-family: arial; white-space: pre-wrap;">Collection will be ongoing, so there is no set deadline… but the earlier, the better, as I will need to prepare graphics and other materials by August 1, 2022.</span></p><p><span style="background-color: white; color: #050505; font-family: arial; white-space: pre-wrap;">Thank you so much for your help!</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuzUArygwbZuGdX61ylajXx8_FU48K6WnMYwoT3EbpA8CjET001Liw3aRUaUCpmdR867KywXnnvGL68mksQxU4nhQsks60dL7qTYhcRWorhJ8htq-WuerTbaTz-KujFZ-MugGtty-rnD8MU2wcnSB5L3EnYFNyu_Wj9-V-OW6iajAY4H7DXs3w-JB-0g/s940/GP.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuzUArygwbZuGdX61ylajXx8_FU48K6WnMYwoT3EbpA8CjET001Liw3aRUaUCpmdR867KywXnnvGL68mksQxU4nhQsks60dL7qTYhcRWorhJ8htq-WuerTbaTz-KujFZ-MugGtty-rnD8MU2wcnSB5L3EnYFNyu_Wj9-V-OW6iajAY4H7DXs3w-JB-0g/w640-h536/GP.png" width="640" /></a></div><br /><p><br /></p>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-10376832794961713302022-04-10T10:25:00.001-07:002022-04-10T10:25:42.454-07:00Humility<div style="text-align: left;"><span style="background-color: white; color: #050505; white-space: pre-wrap;"><span style="font-family: arial; font-size: x-small;">I wrestle with how to express myself in a way that I am understood without sounding as if I am simply whining or making excuses. It should not be this difficult, and the fact that it is tells me we are failing to reach people in ways that touch their hearts.</span></span></div><div style="text-align: left;"><span style="background-color: white; color: #050505; white-space: pre-wrap;"><span style="font-family: arial; font-size: x-small;"><br /></span></span></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: arial; font-size: x-small;">To the healthy people out there, please imagine with me, if you will…</span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: arial; font-size: x-small;">You are unable to eat more than 500-750 calories per day on a good day and often go completely without nutrition for several days in a row. You are fatigued, nauseous, and in pain. Your sleep patterns are also often disturbed. Your ability to think, reason, and make good decisions are all compromised by this deprivation. You are at your wit’s end, hanging by a thread, barely keeping your head above water.</span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: arial; font-size: x-small;">Yet, you must continue on with your regular activities. You must work, run errands, do household chores, and care for your children and pets. You must make it to meetings, significant events, and social affairs as well. You must seamlessly adjust to any crises or changes that arise, without voicing objection or hinting at hesitation. You must remain polite, professional, and poised at all times, despite your world crumbling around you.</span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: arial; font-size: x-small;">You feel as if you are on the verge of collapse, but the world demands you go forward, never-ceasing, never missing a beat – and that you do so with a smile on your face and a pep in your step. You cannot show weakness, make errors, or fall short of goals… for if you do, the vultures await.</span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: arial; font-size: x-small;">They hover near, seeking any opportunity to scold, berate, convince you that you are “lesser,” worthless. Their words are harsh and their judgment harsher. They await your failure with bated breath, ready to pounce upon your slightest mistake. They offer no grace, no mercy, no forgiveness, and no empathy. They are oblivious to your plight, to your struggles, because these do not match their own experiences. They are unwilling to look beyond their own interests and needs and consider the burdens of others. They are high and mighty in their ivory towers, blessed with health, opportunity, and good fortune. They are perfection in their own eyes. And you? You are a mere mortal, a sinner, outmatched. </span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="background-color: white; color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: arial; font-size: x-small;">I ask you with all the passion and humility I can muster, the next time you seek to judge me – or anyone in my community – pause and consider my circumstances. Try for a second to put yourself in my shoes, and when I misstep, do me the courtesy of showing me the benefit of the doubt. Exercise a bit of compassion, soften your glaring glance, and hold your lashing tongue because you who are so fortunate have little idea what I face. I fail, and I fail often, but I am trying my best, and you know not the effort I expend to simply survive the day, let alone stay on top of the game.</span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div><div dir="auto"><span style="font-family: arial; font-size: x-small;"><br /></span></div><div dir="auto"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2IaTGdd0RV-4C_j3tReXM2HR0QGfCD0QHtdif6goQh2C--dR4t2LzSsdmD9HWsmjuUlteXFtwFjHlm_1uPp2fMAODrz3SU7KkVwcwb3H4Km-OV1imBb6DtegHbbj4k33Ko-YYEP61gTufFNwEhxvTvoY2qmD06LwVBtLa4AjU2VhmpZstQPO5qzd-RQ/s940/Humility.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2IaTGdd0RV-4C_j3tReXM2HR0QGfCD0QHtdif6goQh2C--dR4t2LzSsdmD9HWsmjuUlteXFtwFjHlm_1uPp2fMAODrz3SU7KkVwcwb3H4Km-OV1imBb6DtegHbbj4k33Ko-YYEP61gTufFNwEhxvTvoY2qmD06LwVBtLa4AjU2VhmpZstQPO5qzd-RQ/w640-h536/Humility.png" width="640" /></a></div><br /><span style="font-family: arial; font-size: x-small;"><br /></span></div></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-37531681331625845072021-11-01T08:27:00.005-07:002022-06-18T10:37:09.913-07:00ONCE IN DREAMS<div><br /></div>From a dream, soft and tender, she awakes <br />To the harsh, bitter opening of the day <br />Feels its icy-cold breath on her neck <br />And clutches the covers close to her chest <br /><br />In the realm of the dream, she would prefer to remain <br />But her body betrays her, and she protests in vain <br />No lingering in safety, reclaiming moments long-past<br />For time marches ever onward – forward, not back <br /><br />She crawls begrudgingly out of her bed <br />Knowing all too well the misery that lies ahead <br />She is alone, as these days is most always the case <br />In isolation, disaffection, her demons she must face <br /><br />Passes portraits, sweet smiles, as she treads lightly down the hall <br />But her laughter is missing, unlike the woman on the wall <br />Carefree snapshots of one she once thought she knew <br />Shuts her eyes, bites her lip; she is just passing through <br /><br />Catches glimpses in the mirror of a soul frail and old <br />This spectre, this shadow, who will never be whole <br />The best laid plans, off the rails, it would seem <br />Ravaged by circumstance, victim of fate’s foul schemes <br /><br />Nearly grasps, almost reaches, vaguely recalls <br />The woman she once was, prior to her fall <br />She was fresh and full of hope, passion, and fire <br />A force to be reckoned with, a spirit to admire <br /><br />Now saddled and tamed, she relives and regrets <br />Retraces, to no avail, her missed paths and missteps <br />She harbors a hole in her heart that won’t heal <br />Struggles to stay present – some days, to simply feel <br /><br />Her thoughts never cease to remind her of her pain <br />Of all she has lost and how little remains <br />She clings to the remnants as if they were gold <br />But she finds herself slipping, nothing left to hold <br /><br />The memories are dreadful; they punish and wound <br />They rip and they shred; they refuse to soothe <br />She is trapped in a loop, cannot scale the walls <br />Confined to her cell, to a prison lacking bars <br /><br />She longs for serenity, for long-lasting peace <br />For stability, security, and a sense of relief <br />She yearns for the normal, for one more good day <br />But her hope for that future is fading, wasting away <br /><br />She believes in her Maker, knows something better lies ahead <br />But she stumbles, lacks wisdom, and sometimes doubts instead <br />Seeking meaning in this life, her nagging questions persist <br />Trusts the future, but until then… how does she exist?<br /><br />She drags through the hours, weary and spent <br />Endeavors to understand this cruel hand she’s been dealt <br />She flounders and fumbles and tries hard to resist <br />The notion it’s for nothing, that something’s seriously amiss <br /><br />She does what she can to ease the suffering of others <br />But whether it matters at all, she often wonders <br />Is she making a difference? Are her efforts well-received? <br />Has she learned all the lessons? Is her Author well-pleased? <br /><br />By the end of the day, she has no more left to give <br />And only hopes that her failings all might forgive <br />Lies back down in the embrace of her warm open bed <br />And once again invites the dreams that still live in her head <br /> <div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1_QkV54_t4OWTp-p-08XwZRDvhJU5DvIoSadJswbcpJOVUw-pe5Gz1A8vGvfY1tGMhX-tz9yPSgA7IMLKMyXk_e6hk33qlr0oEyKuovRvWUaXoEzh5oeGilOaP4qcCSohPVz1E463L3uV/s940/Once+in+Dreams.png" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1_QkV54_t4OWTp-p-08XwZRDvhJU5DvIoSadJswbcpJOVUw-pe5Gz1A8vGvfY1tGMhX-tz9yPSgA7IMLKMyXk_e6hk33qlr0oEyKuovRvWUaXoEzh5oeGilOaP4qcCSohPVz1E463L3uV/w400-h335/Once+in+Dreams.png" width="400" /></a></div><br /><div><br /></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-16845863274178871552021-08-16T06:26:00.000-07:002021-08-16T06:26:43.754-07:00This Is GP<p><b>It is physical agony beyond compare</b>. It is days and nights spent on the bathroom
floor, crying, pleading for someone to make the crippling pain, nausea, and
vomiting stop. It is being too exhausted
to focus, too drained to complete chores, and too weak to climb up the stairs
to your bedroom. It is hungering for
food, relief, a moment’s peace. It is
praying for an end to the never-ceasing torment while knowing in your heart you
will face it again tomorrow. </p>
<p class="MsoNormal"><b>It is frustration and anger</b>. It is watching others eat, work, and play,
and wondering why they were blessed with such normalcy while you are fated to
be ill. It is seeking independence but
knowing you must now rely on others to perform basic tasks. It is seeking consistency but realizing you
are subject to the whims of this cruel disease and your symptoms can worsen in
an instant, destroying the best-laid plans.
It is pushing yourself to the point of collapse and going without eating
some days, though you know you should not, just to show this disease who is in
control. It is being endlessly asked if
you are okay, listening patiently to well-meaning yet misguided souls offer
“remedies” and unsolicited advice, kindly overlooking their pronouncements that
you “just need to eat,” explaining the nature of “chronic” illness time and
time again, and ceaselessly trying to convince those around you that you might
never be “okay” again, not in the sense they imagine. It is doing everything you are supposed to do
– following the diet, exercising, resting, taking your medications, keeping
your medical appointments – but still receiving no healing. </p>
<p class="MsoNormal"><b>It is multiple levels of worry and fear</b>. It is checking the menu in advance and
wondering how it will look when you only order a drink. It is searching for a bathroom as soon as you
enter the building. It is carrying
emesis bags and a change of clothes in case of accidents. It is reading the room to know how
embarrassed you will be should such an incident occur. It is checking your watch because after an
hour or two you might not be well enough to drive yourself home. It is worsening symptoms, comorbidities, and flares
that grow longer and are more frequent. It
is scary-low blood pressure, poor lab markers, shaky footsteps, and mental
confusion. It is 500-calorie days,
liquid diets, tube feedings, and TPN. It
is ER trips and hospital stays that leave you wondering how long you can
survive this. It is not knowing the
cause and believing that doctors will never find it. It is watching your GP friends struggle and
sometimes die – and pondering whether you will be the next green candle on
someone’s wall. </p>
<p class="MsoNormal"><b>It is disappointment and lowered expectations</b>. It is trying a food again and again, hoping
against hope that this time you will be able to tolerate it, and then dealing
with the pain of your mistake. It is
going to doctor after doctor, trying treatment after treatment, eagerly
anticipating relief, only to have your dreams dashed when it makes no
difference. It is the look of
dissatisfaction you see from your boss when you cannot complete an assignment, from
your friends when you call to cancel, and from your family when you cannot do
your fair share. It is being unable to
meet the demands placed upon you by yourself and others, though you wish with
all your heart you could, as you once did.
It is watching your world shrink before your eyes as you constantly try
to readjust. </p>
<p class="MsoNormal"><b>It is grief and loss</b>.
It is knowing that despite your best efforts, you won’t make it to your
job tomorrow, that you will miss your daughter’s play later this week, that the
vacation you planned for next month will be put on hold, and that you will be
absent from the family Christmas gathering again this year because you are
unable to function. It is wishing your
friends would invite you over like they used to but knowing you have
disappointed them one too many times. It
is yearning to share a meal with your family, just a simple meal, but being
nauseated by the mere smell of food. It
is lying on the sofa on your anniversary instead of spending the evening out
and then wondering why your spouse does not look at you quite the way he used
to. It is gazing into your child’s
pleading eyes and for the millionth time saying, “I can’t.” It is the loss of your career, your social
life, your enjoyment of food, your spontaneity, your independence, your sense
of security, your dignity, and your peace.
It is desperately wanting your old life back, longing to have just one
more carefree, symptom-free, “normal” day like the ones you once took for
granted. <o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><b>But Gastroparesis is more than this… <o:p></o:p></b></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal"><b>It is a teacher of compassion and empathy</b>. It opens our eyes and our hearts to the
struggling souls who surround us who need to be heard and understood. It demonstrates the depths of physical and emotional
pain and makes us far more open and responsive to the similar needs of
others. It admonishes us that there are
failures in our approach that must be addressed, that all lives are valuable
and all people are deserving of dignity, and that the chronically ill are not
merely statistics but living, breathing beings who still have hopes, dreams,
and goals. It develops in us
sensitivity, understanding, and a sense of responsibility to those around us. And it creates in us a desire to make it all
better, to serve, to educate, to guide, to dedicate ourselves to easing the
pain of others; it reveals meaning and purpose in an otherwise seemingly random
world. </p>
<p class="MsoNormal"><b>It is a developer of appreciation</b>. It reminds us that we are not promised
another day and that the people and things we once took for granted are
precious. We let go of grudges and
embrace our loved ones without restraint because we have learned there is no
“perfect time” to tell those who matter that they do. We embrace the small, beautiful moments
because they are so few now. We pause,
soak them in, feel them to the depths of our souls. We seize each second of joy
and fully grasp the significance of what we once thought mundane. It is the ordinary that is special,
priceless, and it is sometimes only when we have lost this that we understand.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p><b>It is an encourager of resilience, perseverance, strength
of will, and determination</b>. For
despite the vast hardships and obstacles before us, we daily overcome. We wake, adjust and accommodate, and continue
on, even when all seems bleak. We face
our sorrows and our fears, push the pain and fatigue to the far corners of our
minds, dust ourselves off, and find paths forward. We speak out and advocate for proper care and
decent treatment for ourselves and others, and we fight for cures so that not
one more precious soul must share this nightmare. Day after day, we endure adversities we never
dreamed we could, and we emerge stronger for having survived these trials. We hold onto defiant hope, earned through fortitude
and determination to alter our fates, and we endeavor to one day live the lives
that were so brutally stolen from us, or in the absence of this, create new,
meaningful lives borne out of this suffering.
We stubbornly refuse to relinquish our dreams and choose, instead, to
excel in even the darkest of times. </p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal"><b>#ThisIsGP</b></p><p class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSZIqnnmr8a5-9fBP7jRqZcW3sMUT8iKeKqa3nJsQ-ePV9wyJgsmvOi24tf3QdP7mgTnCYAedDtpc9wt4eRojMSa_h9vuijEoe6o1vsMNW_pcuc0fYB_osRSbstdwZJk8WNx9LqOoWiQP5/s1080/ThisIsGP+Personal2.png" imageanchor="1" style="clear: left; display: inline !important; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSZIqnnmr8a5-9fBP7jRqZcW3sMUT8iKeKqa3nJsQ-ePV9wyJgsmvOi24tf3QdP7mgTnCYAedDtpc9wt4eRojMSa_h9vuijEoe6o1vsMNW_pcuc0fYB_osRSbstdwZJk8WNx9LqOoWiQP5/w640-h640/ThisIsGP+Personal2.png" width="640" /></a></p><div class="separator" style="clear: both; text-align: center;"><br /><br /></div><br /><b><br /></b><p></p>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-24715312447746057602021-05-03T13:49:00.003-07:002021-05-03T13:49:53.591-07:00LillyShe enters in the midst of the storm,<br />Raging at the injustices of the day,<div>Too much homework, unwarranted grades, <br />“Who uses this stuff anyway?”</div><div><br />“Mom, they made her cry,” she begins, <br />“She was lonely, sad, and all alone, <br />No one seemed to notice or care, <br />So, I went over and asked her to join.” <br /><br />In a flurry, singing songs of her day, <br />Babbling on, chattering feverishly and free, <br />Throwing hands up, arms swinging wildly, <br />She exuberantly brushes right beyond me. <br /><br />She tells the tales of her woe, <br />Then speaks of moments of gladness and joy, <br />I try desperately to take it all in, <br />But I am helplessly, hopelessly slow. <br /><br />The whirlwind gradually passes, <br />She is weary, exhausted, spent, <br />Up the stairs, she sleeps finally in peace, <br />Lovely spirit; she is indeed Heaven-sent. <br /><br />Watch her slumber, though she is unaware, <br />As I recall fondly the long-ago years, <br />When she was younger and oh-so-innocent, <br />Close my eyes and battle back the tears. <br /><br />I once held her closely, cradled in my arms, <br />And rocked her slowly while she slept, <br />Kissed her forehead, touched her toes, <br />A perfect angel I was meant to protect. <br /><br />It is Christmas and we are driving, <br />He is freezing, abandoned to the street, <br />“We have to help him. He is starving, <br />Can’t we just give him enough to eat?” <br /><br />Don’t have much, but we oblige, <br />And still, it is not enough, <br />Money is not the answer, <br />“Mom, he needs a hug.” <br /><br />She stoops to accept and embrace him, <br />Tears glistening brightly in her eyes, <br />He is taken aback, astounded, <br />The look of wonder and surprise. <br /><br />She lingers, reluctant to leave, <br />But we must end this – what more can we do? <br />She has a million questions, so disturbed, <br />I want to answer – how I wish I knew. <br /><br />And still, this homeless man haunts her, <br />Though many years have gone by, <br />She revisits, relives this moment, <br />Never leaves her, no matter the time. <br /><br />Skip my memory, fast-forward, <br />She is in the yard, saving worms, <br />It is raining, and “they will drown,” <br />So, she helps them, as she has once sworn. <br /><br />She’s in the bathroom, getting ready, <br />“Daddy, please help the bug,” <br />“Mommy, don’t kill the spider,” <br />So compassionate and full of love. <br /><br />Elementary, middle, and high schools, <br />Academics, sports, and clubs, <br />Bumps, and bruises, and heartaches, <br />Somewhere along the line, she grew up. <br /><br />Becoming the person she’ll one day be, <br />Separate thoughts, different views all her own, <br />Branching out from the old and familiar, <br />Stepping away from the world she has known. <br /><br />I marvel at her grace and her beauty, <br />As I help her get ready for her first prom, <br />I am anxious and nervous, feel I’m losing her, <br />“He’s nice, so please don’t worry, Mom.” <br /><br />Her bicycle gathers dust in the garage, <br />It has now been replaced by a car, <br />I prepare for the day she will leave us, <br />As we assess colleges both near and far. <br /><br />Where is my little one, my child? <br />It seems like a dream, all a blur, <br />The young woman now standing before me, <br />Tells me time has flown swiftly and sure. <br /><br />I bend down and whisper I love her, <br />Begrudgingly go back to my bed, <br />Hate to leave her and pray she is safe, <br />That we have many good days left ahead. <br /><br />Morning breaks and the tempest begins, <br />She’s in a hurry, a bustling gust of wind, <br />But I am shouting, crying, sick, and drained, <br />Wishing illness away, I am at my wit’s end. <br /><br />Silent and unsure, she enters the room, <br />No solutions or wisdom, nothing to discuss, <br />She rubs my back and embraces my shoulders, <br />She is sufficient – in this moment, more than enough.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ2-gBpjPkDj2zcoZ1R6AdWIy0kOJiKNTJt9V5s8_SzwIuH9xb5oedSWaj0YblvwR1vsAzah7Ca-i8ngqXaTgpZisqVVOLMC8ZO53L_DuLj4G-UlbMaG4PdBUJmu-kT0y3-S3rJQ4slyTK/s1650/100_3208bGP2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1215" data-original-width="1650" height="295" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ2-gBpjPkDj2zcoZ1R6AdWIy0kOJiKNTJt9V5s8_SzwIuH9xb5oedSWaj0YblvwR1vsAzah7Ca-i8ngqXaTgpZisqVVOLMC8ZO53L_DuLj4G-UlbMaG4PdBUJmu-kT0y3-S3rJQ4slyTK/w400-h295/100_3208bGP2.jpg" width="400" /></a></div><br /><div><br /></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-21729617848602223752021-04-12T13:24:00.001-07:002021-04-12T13:24:27.330-07:00GRACE LONG-FORGOTTENYou think yourself virtuous, faithful, and true, <br />Faultless, flawless, perfection, <br />A bastion of moral superiority and authority, <br />Spitting image of God’s own true reflection. <br /><br />But who are you to denounce the fallen? <br />What gives you the right to judge? <br />Sentencing from your pristine ivory tower, <br />Stubbornly refusing to budge. <br /><br />You’ve no right to pontificate and condescend, <br />To the sorrowful whose lives are so burdened, <br />By chance, by fate, by regret, and disappointment, <br />Those abandoned, cast out, and deserted. <br /><br />For you see but a single moment in time, <br />A life shattered by cruel circumstance, <br />A being who might have been glorious, divine, <br />One which cannot be known by first glance. <br /><br />From your safe, lofty perch, far above the fray, <br />You pronounce remedies and rain down your wisdom, <br />But your words fall hollow, shallow, and cold, <br />Upon the ears of the unenlightened unforgiven. <br /><br />Your curses and condemnations steal their hopes, <br />And crumble their precarious self-esteem, <br />Weigh mightily on their troubled minds and souls, <br />Resign them to mediocrity, crush their dreams. <br /><br />You cannot inspire through loathing and contempt, <br />Though in your callous shadow they may cower, <br />You only frighten, discourage, enslave, enrage, <br />Cannot lift them by virtue of your own power. <br /><br />Come down from the top of your towering mountain, <br />Step out of your unyielding fortress, <br />Walk among the lowly, the simple, the unassuming, <br />And for their grievances, offer remedy, redress. <br /><br />Encourage the faithless who helplessly struggle, <br />Those blinded by the harshness of life, <br />Offer succor, mercy, and sweet gentle comfort, <br />Show them the beauty of the Light. <br /><br />For you were once where they find themselves, <br />But for the smallest, simplest twist of fate, <br />And by the grace of God – long-forgotten, <br />You were granted the narrow and straight. <br /><br />You retain your position, your stronghold, <br />Atop a tenuous, temporal throne, <br />On the wind, at the whim of the Power on High, <br />Through no effort or real merit of your own. <br /><br />You were chosen to minister, serve, and attend, <br />Called to help the impoverished and downtrodden, <br />Not to bask in the glory of your personal fame, <br />Nor be self-centered, narcissistic, and haughty. <br /><br />So, humble yourself before your Maker above, <br />Before the masses, bow low your pride, <br />Open your heart and restore your soul, <br />See the world with newly-found eyes. <br /><br />Embrace and enfold the long-suffering others, <br />Hold them gently just under your wing, <br />Offer soft, soothing tunes of forgiveness, <br />And together, we will learn how to sing.<div><br /></div><div class="separator" style="clear: both; text-align: justify;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLbvOXFAcOrPq0IhzSTF8wUMTkr0xu3yUUGPC_JSVAZlB6Q3iDSV0Nd_W1k01PPFFcVCdsTNZLKS6f68DbzX_W6ZngzfSsBE8A1RE-C84JV7woObRJqEu_2ZxjE9f4MLPdsPEYz81q2kd1/s940/Grace.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLbvOXFAcOrPq0IhzSTF8wUMTkr0xu3yUUGPC_JSVAZlB6Q3iDSV0Nd_W1k01PPFFcVCdsTNZLKS6f68DbzX_W6ZngzfSsBE8A1RE-C84JV7woObRJqEu_2ZxjE9f4MLPdsPEYz81q2kd1/w640-h536/Grace.png" width="640" /></a></div><br /><div style="text-align: left;"><br /></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-92034256283273177902021-02-14T06:34:00.000-08:002021-02-14T06:34:28.215-08:00WHAT YOU MEAN TO ME<div style="text-align: left;">Joy and heartache, triumph and despair,<br />Hard-fought battles and arduous trials,<br />No matter the tests or tribulations that come,<br />We face them all together, side-by-side.<br /><o:p> <br /></o:p>Your gentleness and true affection,<br />Understanding and thoughtfulness,<br />Touch my once-callous heart, my troubled soul,<br />Leave me thankful, deeply humbled, profoundly blessed.<br /><o:p> <br /></o:p>Though burdened with hardship and ailment,<br />My life still has purpose and meaning,<br />For I have found in you beautiful people,<br />A reason to try, to aspire, keep believing.<br /><o:p> <br /></o:p>I have hope that we can usher in change,<br />That together, we can all make a difference,<br />That the world will open its blind, passive eyes,<br />And we will then see our splendid deliverance.<br /> <o:p> <br /></o:p>That the deaf will soon hear our passionate pleas,<br />For mercy, tenderness, and human kindness,<br />That we will promptly have a cure, or a measure of relief,<br />So we can rise – and leave this cruel illness behind us.<br /><o:p> <br /></o:p>You are forever in my thoughts and my prayers,<br />Such precious, treasured, priceless souls,<br />My friends, my focus, my fondness, my devotion,<br />Worthy of effort, deserving of a voice.<br /><o:p> <br /></o:p>So, I offer you my undying love song,<br />Pale and inadequate though it may be,<br />That you might know you are valued and cherished,<br />And understand how much you all mean to me.</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; 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<p class="MsoNormal"><o:p></o:p></p>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-17946751408030818942020-08-11T08:27:00.001-07:002020-08-11T08:27:18.818-07:00HOME<p class="MsoNormal">The call in the middle of the night,</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">For which one is never prepared,<o:p></o:p></p>
<p class="MsoNormal">Unwelcome guests on the doorstep,<o:p></o:p></p>
<p class="MsoNormal">With heart-wrenching news to share.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">We try to process the horror,<o:p></o:p></p>
<p class="MsoNormal">Sit in stunned silence, confused,<o:p></o:p></p>
<p class="MsoNormal">Cannot accept the certitude, the finality,<o:p></o:p></p>
<p class="MsoNormal">The mind rejects the mind-numbing truth.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Devastating, life-changing utterances,<o:p></o:p></p>
<p class="MsoNormal">Fall upon unprepared ears,<o:p></o:p></p>
<p class="MsoNormal">Words conveying brutal realities,<o:p></o:p></p>
<p class="MsoNormal">Our worst and suddenly confirmed fears.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Gone with no warning, in a moment,<o:p></o:p></p>
<p class="MsoNormal">Gone with no chance for goodbyes,<o:p></o:p></p>
<p class="MsoNormal">Gone while we all slept at peace,<o:p></o:p></p>
<p class="MsoNormal">Gone in the blink of an eye.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Agony and grief beyond compare,<o:p></o:p></p>
<p class="MsoNormal">Tears of sorrow now freely flow,<o:p></o:p></p>
<p class="MsoNormal">Devastation descends on our hearts,<o:p></o:p></p>
<p class="MsoNormal">Realization dawns ever so slow.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Try to make sense of the senseless,<o:p></o:p></p>
<p class="MsoNormal">But the nagging questions remain,<o:p></o:p></p>
<p class="MsoNormal">Did she struggle and did she suffer?<o:p></o:p></p>
<p class="MsoNormal">Was she aware and was she in pain?<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Did she feel the love of her Savior,<o:p></o:p></p>
<p class="MsoNormal">In those last precious moments on earth, <o:p></o:p></p>
<p class="MsoNormal">Was she aware of His arms wrapped around her,<o:p></o:p></p>
<p class="MsoNormal">In death as they had been from birth?<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Was she comforted by His sweet song,<o:p></o:p></p>
<p class="MsoNormal">When welcomed into the glorious light?<o:p></o:p></p>
<p class="MsoNormal">Did she feel the depths of His compassion,<o:p></o:p></p>
<p class="MsoNormal">While ushered out of this darkest of nights?<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">Did she know of His unknowable mercy,<o:p></o:p></p>
<p class="MsoNormal">Of His free and unmerited grace,<o:p></o:p></p>
<p class="MsoNormal">Comprehend His unfathomable love,<o:p></o:p></p>
<p class="MsoNormal">When she at last gazed upon His face?<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">And has she now found peace, so elusive?<o:p></o:p></p>
<p class="MsoNormal">We pray she knew how much we loved her,<o:p></o:p></p>
<p class="MsoNormal">We mourn, and we ache, and we weep,<o:p></o:p></p>
<p class="MsoNormal">Find comfort in the kindness of others.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">This life is so fleeting, so brief,<o:p></o:p></p>
<p class="MsoNormal">A precious and glorious gift,<o:p></o:p></p>
<p class="MsoNormal">We are here and gone in an instant,<o:p></o:p></p>
<p class="MsoNormal">The days flowing onward and swift.<o:p></o:p></p>
<p class="MsoNormal"><o:p> </o:p></p>
<p class="MsoNormal">This world is not our final destination,<o:p></o:p></p>
<p class="MsoNormal">Not our hope, or our rest, or our home,<o:p></o:p></p>
<p class="MsoNormal">We were meant for another, our Maker,<o:p></o:p></p>
<p class="MsoNormal">And to Him we lovingly belong.</p><p class="MsoNormal"><br /></p><p class="MsoNormal">So, breathe in the beauty around you,</p><p class="MsoNormal"><o:p></o:p></p>
<p class="MsoNormal">And cherish the ones you love,<o:p></o:p></p>
<p class="MsoNormal">Embrace them while they are still near you,<o:p></o:p></p>
<p class="MsoNormal">Hold tight to the memories when they are gone.<o:p></o:p></p><p class="MsoNormal"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFKa9k3Scrd8KeviiyV1zwAbpJWu2GkqP7m_UIHf5FCpTV-W4qQ1l8SZNdnnSi5U4RVcm5YF-52f8JqVP-95TnXNfB1fPft-GdVmxsOtfoIxTSSrBf0gHn1Xz3KuRThamrYPSEzLHHnlIB/s560/Bird+%2526+Cage-LoveMercyEph2-4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="350" data-original-width="560" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFKa9k3Scrd8KeviiyV1zwAbpJWu2GkqP7m_UIHf5FCpTV-W4qQ1l8SZNdnnSi5U4RVcm5YF-52f8JqVP-95TnXNfB1fPft-GdVmxsOtfoIxTSSrBf0gHn1Xz3KuRThamrYPSEzLHHnlIB/s0/Bird+%2526+Cage-LoveMercyEph2-4.jpg" /></a></div><p class="MsoNormal"><br /></p><p class="MsoNormal"><o:p></o:p></p>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-76296174078195280292020-08-01T08:03:00.000-07:002020-08-01T08:03:23.218-07:00GASTROPARESIS AWARENESS MONTH 2020: #WarOnGP #GPRevolution<div class="" data-block="true" data-editor="4tk04" data-offset-key="dre53-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="dre53-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span style="font-family: inherit;">Six years ago, on Valentine’s Day 2014, I was diagnosed with Gastroparesis, and my life was, from that moment on, forever altered. Since diagnosis, I have endured much and have learned even more. I advocate because it saves me from despair and adds meaning and purpose to my life, despite the harsh effects of this cruel illness.</span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="aq86p-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="aq86p-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="aq86p-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="f28il-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="f28il-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="f28il-0-0" style="font-family: inherit;">Over time, I have set many goals for myself and for this community, and chief among them is convincing my people how incredibly strong, skilled, able, and special they are. This is not an easy sell, since the world has convinced many of them to buy into the lie that chronic illness makes one weak and worthless.</span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="ajq6d-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="ajq6d-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="ajq6d-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="5c674-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="5c674-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="5c674-0-0" style="font-family: inherit;">But nothing could be further from the truth.</span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="metj-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="metj-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="metj-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="boo33-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="boo33-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="boo33-0-0" style="font-family: inherit;">I have witnessed agony beyond compare in our GP groups, horror stories of neglect by friends, family, and the medical system; physical, mental, and emotional pain and abuse; career loss, financial bankruptcy, homelessness; hopelessness; and death. I have also witnessed unrivaled compassion, empathy, and spirit and am frequently awed by our members' generous gifts of time, information, advice, and encouragement to other members in need, all while they themselves struggle to get through the long, dark days. Time after time, they pick themselves up, dust themselves off, and find ways to survive, despite the difficulties.</span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="crlai-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="crlai-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="crlai-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="8078n-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="8078n-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="8078n-0-0" style="font-family: inherit;">Yet these feelings of worthlessness and inadequacy persist and are perhaps heightened because, despite our monumental efforts, we still have no cure. Last year, in an attempt to pass HR 3396, the Functional Gastrointestinal and Motility Research Enhancement Act of 2019 (a budget-neutral, nonpartisan bill that directs the NIH to expand and intensify its research and education efforts in regard to digestive disorders such as gastroparesis), at my urging and with a strong desire to unite for our cause, members of my Gastroparesis: Fighting for Change community sent hundreds of letters to their congressional representatives and made countless telephone calls urging these lawmakers to sign onto the bill. </span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="2am82-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="2am82-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="2am82-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="89k3t-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="89k3t-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="89k3t-0-0" style="font-family: inherit;">In addition, in June of 2019, despite the physical and financial challenges, many of us traveled from throughout the nation to Washington, DC, for an unprecedented patient rally that highlighted our hardships, our need for proper medical care, our lack of research funding, and our desire to once again live “normal” lives. We gathered the day after that rally and (with the help of a disease-related nonprofit who assisted us in scheduling) met in person with our legislators on Capitol Hill. At home, in our individual states, those who could not travel with us hosted a virtual March on DC as well, and a few months later, we followed this up with a Virtual Advocacy Day, designed to sway our legislators to finally open their eyes to our plight and cosponsor our bill. We shared our stories, bared our souls, and put forth our best effort to make a difference for our gastroparesis community. </span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="8kspm-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="8kspm-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="8kspm-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="68r76-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="68r76-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="68r76-0-0" style="font-family: inherit;">The result? To date, we have a whopping 22 cosponsors. Yes, that’s right… 22 out of our 435 House representatives deemed us worthy of help… 22. </span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="9kmh6-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="9kmh6-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="9kmh6-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="5pi1q-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="5pi1q-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="5pi1q-0-0" style="font-family: inherit;">Now a lesser group of people might have given up at this point, especially considering that in past years, with far less action and advocacy, the bill garnered nearly the same level of support. But is that what we did? No, because we are neither incapable nor apathetic. We regrouped, and a handful of volunteers researched and called the offices of those representatives who so blithely dismissed their own constituents, and we gathered the names and contact information of the health staffers of every single legislator who turned a deaf ear to our cries. And in less than one week, we sent follow-up letters to 185 congressional offices representing 349 constituents. That kind of effort and support from a community our size is unheard of.</span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="81nmu-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="81nmu-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="81nmu-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="3s6fo-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="3s6fo-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="3s6fo-0-0" style="font-family: inherit;">Despite the daunting task and the overwhelming odds against us, we answered the call. And we will continue our efforts to educate legislators about our illness and inform them of our needs so that every man, woman, and child in our gastroparesis community can receive competent, compassionate care and so that we are granted much-needed research funding that tackles the causes of our illness, rather than merely symptom control, and which brings us cures rather than band-aids. We must have our lives back!</span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="1okfd-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="1okfd-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="1okfd-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="e41p4-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="e41p4-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="e41p4-0-0" style="font-family: inherit;">The current healthcare system has failed us, and the powers that be believe we should sit in silence while they “guide” us to our slaughter. But we are not helpless sheep, nor are we inept or unmotivated, and we vow to make the voices of the more than 5 million of us heard by everyone who impacts our care – our families and friends, the medical community, the researchers, our legislators, the media, and the general public. My friends are suffering and dying while the whole lot of “influencers” gain wealth and prestige at our expense, and we have had enough. </span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="5uhh6-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="5uhh6-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="5uhh6-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="360l7-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="360l7-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="360l7-0-0" style="font-family: inherit;">Make no mistake, we are in the midst of a War on GP, a GP Revolution as we like to call it, and we can take no prisoners. We are committed to meaningful change for our community. We can and will realize our goals. </span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="obh-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="obh-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="obh-0-0" style="font-family: inherit;"><br data-text="true" /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="d1qnm-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"><div class="_1mf _1mj" data-offset-key="d1qnm-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="d1qnm-0-0" style="font-family: inherit;">Answer the call. Suit up!</span></div><div class="_1mf _1mj" data-offset-key="d1qnm-0-0" style="direction: ltr; font-family: inherit; position: relative;"><span data-offset-key="d1qnm-0-0" style="font-family: inherit;"><br /></span></div><div class="_1mf _1mj" data-offset-key="d1qnm-0-0" style="direction: ltr; font-family: inherit; position: relative;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF1Y5BQ8myNDltXaLNf441XeztZkwd099vB-8QZwEa7IuqHFCjmJubjiNrtevlYQP1TghdolNeFwBfv7XPwPZyCa1mDjTwm5wSAKqtZ5zC0-4iUiTp1w7j27IQzrgq4oOnYOKdkK8ZsJoj/s1080/Suit+Up2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF1Y5BQ8myNDltXaLNf441XeztZkwd099vB-8QZwEa7IuqHFCjmJubjiNrtevlYQP1TghdolNeFwBfv7XPwPZyCa1mDjTwm5wSAKqtZ5zC0-4iUiTp1w7j27IQzrgq4oOnYOKdkK8ZsJoj/s640/Suit+Up2.png" /></a></div><span data-offset-key="d1qnm-0-0" style="font-family: inherit;"><br /></span></div><div><span data-offset-key="d1qnm-0-0" style="font-family: inherit;"><br /></span></div></div><div class="" data-block="true" data-editor="4tk04" data-offset-key="c920o-0-0" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;"></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-14022427963410510022020-07-10T14:32:00.000-07:002020-07-10T14:32:06.995-07:00HERE ONE MOMENTHere one moment and gone the next, <br />Such a brief life with which we are blessed, <br />“How did this happen?” we ask, perplexed, <br />“Could no one help her? Did no one suspect?” <br /><br />We recognize its ravages, know well its ways, <br />We see the risks and are often afraid, <br />But when one amongst us slips silently away, <br />We gasp and fret, alarmed and dismayed. <br /><br />It seems so shallow, meaningless, cliché, <br />To offer our condolences – but what else can we say? <br />This cruel illness to which we are chained every day, <br />Shatters our peace, steals our loved ones away. <br /><br />The grief is stifling, difficult to bear, <br />Surprising, shocking, comes out of nowhere, <br />We weep and mourn, light a candle, say a prayer, <br />And wonder if deep down, she knew how much we cared. <br /><br />People pass through our lives, just a name and a face, <br />And we barely pause to appreciate their beauty and grace, <br />Catch only a glimpse of their heartache and pain, <br />A lightning-quick flash of how they struggled in vain. <br /><br />We see but pieces and not the whole, <br />Of a life well-lived, a glorious soul, <br />We long to connect and strive to do more, <br />But we are barely surviving, and so, we fall short. <br /><br />Still, we mourn the losses of those who like us, <br />Fought to keep fighting and never gave up, <br />We praise their endurance and lift up the cup, <br />Toast their brave front and express our remorse. <br /><br />But how do we process the anguish we feel? <br />How do we make sense, move forward, and heal? <br />Moreover, how do we handle the horror and fear, <br />That perhaps one day soon we, too, will disappear? <br /><br />What if the candle burns next for me? <br />Will lovingly, kindly remembered I be? <br />My tortured body finally set free? <br />My tormented mind at last granted peace? <br /><br /><div>Will the world pause a moment to acknowledge my fate? <br />Will it notice my absence, feel the vast emptied space? <br />Will my words and my deeds then more fully resonate? <br />Will they understand the cause to which myself I dedicate? <br /><br /></div><div>Will my life have meant something to someone, to all? <br />Or will my passion and devotion to answer the call, <br />And raise my voice for those on whom misfortune befalls, <br />On cold hearts, darkened souls, and deaf ears at last fall? <br /><br />Few answers, I fear, small comfort, just a plea, <br />That our humanity, our hearts, our totality you see, <br />And not just our illness, our failings, our needs, <br />But our striving to live fully, to matter, to succeed. <br /><br />Here one moment and gone the next, <br />Such a brief life with which we are blessed, <br />Take it in, feel the wonder, give it our best, <br />In the end, hope for peace and mercy and rest.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7cSTDb_my0IGm0NCKEAK2Zvbuv_ttcpzWNnQxNHpSNNxyOUZr6vZGpHV-2AepHSy3fWijI6MKvMc8He58tjydQcKJ1PpadtQyJ-1QVNKbh-TUQFJR8rr8NX0oGSqRvzq4_PjmqzwqyGC8/s1080/Here+One+Moment.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="500" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7cSTDb_my0IGm0NCKEAK2Zvbuv_ttcpzWNnQxNHpSNNxyOUZr6vZGpHV-2AepHSy3fWijI6MKvMc8He58tjydQcKJ1PpadtQyJ-1QVNKbh-TUQFJR8rr8NX0oGSqRvzq4_PjmqzwqyGC8/w500-h500/Here+One+Moment.png" width="500" /></a></div><div><br /></div>Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-5912151858869065452020-02-19T14:56:00.000-08:002020-02-19T14:56:13.083-08:00DOWN TO THE GRAVE<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhomYyyNREtkNN1JCGsWnZV3avLDYvwpy00h94QFNr7QU01TVQZZ5WTxEgFfV7FxfSpnZ1ikKXEu3DhnmTqbJnMgUnGS8ANXWYbbzm04yVE5z4JbHYflxCR2VpFSRECJf3y_FONHcwjpQJN/s1600/Down+to+the+Grave.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhomYyyNREtkNN1JCGsWnZV3avLDYvwpy00h94QFNr7QU01TVQZZ5WTxEgFfV7FxfSpnZ1ikKXEu3DhnmTqbJnMgUnGS8ANXWYbbzm04yVE5z4JbHYflxCR2VpFSRECJf3y_FONHcwjpQJN/s400/Down+to+the+Grave.png" width="400" /></a></div>
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As the night rages on, dark and heartless,<o:p></o:p></div>
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The struggle begins, never ends,<o:p></o:p></div>
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Face my demons, my constant companions,<o:p></o:p></div>
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Silent tigers set to pounce yet again.<o:p></o:p></div>
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There is a battle that erupts from within me,<o:p></o:p></div>
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A fight for my weathered and weary soul,<o:p></o:p></div>
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Between utter acceptance and indignation,<o:p></o:p></div>
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Amidst fragments that long to be whole.<o:p></o:p></div>
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Down to the grave the fight pursues me,<o:p></o:p></div>
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Rears its ugly, unforgiving, wicked head,<o:p></o:p></div>
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It taunts and it taints and it tortures,<o:p></o:p></div>
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Overtakes me and fills me with dread.<o:p></o:p></div>
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They tell me I am not my illness,<o:p></o:p></div>
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But it surely has a death hold on me,<o:p></o:p></div>
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A steely, ice-cold grip beyond measure,<o:p></o:p></div>
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And it refuses to just let me be.<o:p></o:p></div>
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Pretending not to notice its presence,<o:p></o:p></div>
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Resisting it and pushing it away,<o:p></o:p></div>
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Denying its very existence,<o:p></o:p></div>
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Seems to me no great plan of escape.<o:p></o:p></div>
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For no matter my feeble attempts at resistance,<o:p></o:p></div>
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It shapes and molds me in sundry ways,<o:p></o:p></div>
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Pain and misery drop their calling cards,<o:p></o:p></div>
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But mercy and compassion are what remain.<o:p></o:p></div>
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So, though I know it is ever within me,<o:p></o:p></div>
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Waxing and waning, friend and foe,<o:p></o:p></div>
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Still, I struggle with how to address it,<o:p></o:p></div>
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Embrace it or simply wish it weren’t so?<o:p></o:p></div>
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You see, the problem lies in the history,<o:p></o:p></div>
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As I long for days long gone by,<o:p></o:p></div>
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As my heart recalls their splendid beauty,<o:p></o:p></div>
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Their siren song stuck in my mind.<o:p></o:p></div>
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<br /></div>
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Days of serenity and tranquility,<o:p></o:p></div>
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Times of mental and physical ease,<o:p></o:p></div>
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No cries of despair and desperation,<o:p></o:p></div>
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No opponent that we call “disease.”<o:p></o:p></div>
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I have tried to submerge my old life,<o:p></o:p></div>
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Have buried it way deep down,<o:p></o:p></div>
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But still, my memories haunt me,<o:p></o:p></div>
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They refuse to stay in the ground.<o:p></o:p></div>
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They call me back and drag me under,<o:p></o:p></div>
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Wound and cut, bring me down,<o:p></o:p></div>
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Remind me I now have nothing to offer,<o:p></o:p></div>
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Bits and pieces of me no longer to be found.<o:p></o:p></div>
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<br /></div>
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I endeavor to savor the moment,<o:p></o:p></div>
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And to future aspirations attend,<o:p></o:p></div>
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But the past still beckons and calls,<o:p></o:p></div>
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It will not allow me to fully mend.<o:p></o:p></div>
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<br /></div>
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And when I think I have settled on an answer – <o:p></o:p></div>
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To embrace my new life much like a friend,<o:p></o:p></div>
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Just when I believe I am devoted to acceptance,<o:p></o:p></div>
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My anger rises, flares hot once again.<o:p></o:p></div>
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I rant and rave in rebellion,<o:p></o:p></div>
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Wage war against my miserable new fate,<o:p></o:p></div>
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Vow solemnly to destroy this illness,<o:p></o:p></div>
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Filled with vengeance and fury and hate.<o:p></o:p></div>
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And what about the so-called “lessers,”<o:p></o:p></div>
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The glorious souls for whom I also fight?<o:p></o:p></div>
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They did not ask for this doom, this misfortune,<o:p></o:p></div>
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And they do not deserve this dreadful plight.<o:p></o:p></div>
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Though this illness runs rampant, unchecked,<o:p></o:p></div>
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It must dearly pay for all it has taken,<o:p></o:p></div>
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From me, from them, and from those yet to come,<o:p></o:p></div>
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I can’t allow them to be forgotten or forsaken.<o:p></o:p></div>
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<br /></div>
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But what of all my efforts and labors?<o:p></o:p></div>
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What can I really hope to achieve?<o:p></o:p></div>
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I fear my friends will still struggle and die,<o:p></o:p></div>
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No compassion, no cure, no relief.<o:p></o:p></div>
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<br /></div>
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Why not remain undisturbed,<o:p></o:p></div>
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Safe in my submission to fate,<o:p></o:p></div>
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Far from the fields of battle,<o:p></o:p></div>
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Close the door, seal it tight, bar the gate?<o:p></o:p></div>
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<br /></div>
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Yet acceptance resembles resignation,<o:p></o:p></div>
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And the most I can bear to do is accede,<o:p></o:p></div>
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To the momentary passing demands,<o:p></o:p></div>
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Of this heartless, unforgiving disease.<o:p></o:p></div>
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<br /></div>
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So, slowly I begin to determine, <o:p></o:p></div>
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That I have a choice to make,<o:p></o:p></div>
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Allow the past to paralyze and chain me, <o:p></o:p></div>
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Or march onward and refuse to break.<o:p></o:p></div>
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Step forward when I am able,<o:p></o:p></div>
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Glance back when defenses are down,<o:p></o:p></div>
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Mourn the setbacks and the passings,<o:p></o:p></div>
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And with hope and promise myself surround.<o:p></o:p></div>
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<br /></div>
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I can stew in my anger and hatred,<o:p></o:p></div>
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I can wallow in sweet misery,<o:p></o:p></div>
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I can focus on the past and all I have lost,<o:p></o:p></div>
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Remain debt-free, no obligations, live for me.<o:p></o:p></div>
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<br /></div>
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Or though the memories burn and consume me,<o:p></o:p></div>
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I can permit them to flame, fuel the fire,<o:p></o:p></div>
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Rise from the ashes of hopelessness and despair,<o:p></o:p></div>
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Full of passion and drive and desire.<o:p></o:p></div>
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<br /></div>
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For my greatest foe is not this illness,<o:p></o:p></div>
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Nor the memories to which I still sometimes cling,<o:p></o:p></div>
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It is apathy and inaction that harm and hinder,<o:p></o:p></div>
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The allies, tag-team buddies of this cruel disease.<o:p></o:p></div>
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<br /></div>
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My recollections of all that is missing,<o:p></o:p></div>
<div class="MsoNormal">
Since this illness struck my once peaceful life,<o:p></o:p></div>
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They speak of all the magnificent reasons,<o:p></o:p></div>
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I must wield the sword and fight the good fight.<o:p></o:p></div>
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<br /></div>
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I battle for the reemergence of what I’ve lost,<o:p></o:p></div>
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Can no longer cling to old and faded memories,<o:p></o:p></div>
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But I must once again fill my broken heart,<o:p></o:p></div>
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With a little bit more than mere dreams.<o:p></o:p></div>
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<br /></div>
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So, down to the grave with apathy, complacency,<o:p></o:p></div>
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With fear and sorrow and regret,<o:p></o:p></div>
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They form the chains that bind and restrain,<o:p></o:p></div>
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Repeat the brutal patterns in which we are set. <o:p></o:p></div>
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<br /></div>
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I refuse to go gently or tread lightly,<o:p></o:p></div>
<div class="MsoNormal">
When so much is to be gained and is at stake,<o:p></o:p></div>
<div class="MsoNormal">
I will gather my forces and take the field,<o:p></o:p></div>
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You can bend me, but I will not break.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Take a moment to mourn my old life,<o:p></o:p></div>
<div class="MsoNormal">
Pause, but then vow to charge ahead,<o:p></o:p></div>
<div class="MsoNormal">
Down to the grave I’ll not willingly go,<o:p></o:p></div>
<div class="MsoNormal">
I choose to bury my grief instead.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The night rages on and the battle again begins,<o:p></o:p></div>
<div class="MsoNormal">
But the nagging demons I will keep at bay,<o:p></o:p></div>
<div class="MsoNormal">
For I have a mission, a duty, a goal,<o:p></o:p></div>
<div class="MsoNormal">
A new dawn, a new day, a clean slate.<o:p></o:p></div>
<br />Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-57465104400726512019-12-01T08:43:00.000-08:002019-12-01T08:47:07.185-08:00ONWARD EVER I GO<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWKBe2XTegPFdEFIm1snY3Jo8rg-4P6Y_gjS-RpwUHVHOlYMLjWB-y9wRTptcjSt9YeKkuXPFNyrpavic-5u_cNFmPAprTp4H_-Sy7MDtWZe94n2nXFGqf8AVbFYHxS0epc5KMWI669L-c/s1600/Onward+Ever+I+Go.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWKBe2XTegPFdEFIm1snY3Jo8rg-4P6Y_gjS-RpwUHVHOlYMLjWB-y9wRTptcjSt9YeKkuXPFNyrpavic-5u_cNFmPAprTp4H_-Sy7MDtWZe94n2nXFGqf8AVbFYHxS0epc5KMWI669L-c/s400/Onward+Ever+I+Go.png" width="400" /></a></div>
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Drag myself up,<o:p></o:p></div>
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Pour myself out,<o:p></o:p></div>
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And some days I wonder,<o:p></o:p></div>
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“Is this what it’s about?”<o:p></o:p></div>
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<br /></div>
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Struggle to find meaning,<o:p></o:p></div>
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Lost in the pain,<o:p></o:p></div>
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Abandoned to this nightmare,<o:p></o:p></div>
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My efforts in vain.<o:p></o:p></div>
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<br /></div>
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Does He see me?<o:p></o:p></div>
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Does He care?<o:p></o:p></div>
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Do I matter?<o:p></o:p></div>
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Is He aware?<o:p></o:p></div>
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<br /></div>
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In the midst of the suffering,<o:p></o:p></div>
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Grief beyond compare,<o:p></o:p></div>
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Masses of people,<o:p></o:p></div>
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Hopeless and in despair.<o:p></o:p></div>
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<br /></div>
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We’re not promised a day,<o:p></o:p></div>
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This I understand,<o:p></o:p></div>
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But I still long for a glimpse<o:p></o:p></div>
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A hint of the Master’s plan.<o:p></o:p></div>
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<br /></div>
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Good people all around me,<o:p></o:p></div>
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Crying out for better days,<o:p></o:p></div>
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Mustering up their courage,<o:p></o:p></div>
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Doing their best to keep the faith.<o:p></o:p></div>
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<br /></div>
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But rewards are few and far,<o:p></o:p></div>
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Hardships near and wide,<o:p></o:p></div>
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Explanations beyond my grasp,<o:p></o:p></div>
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And He does not confide.<o:p></o:p></div>
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<br /></div>
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Don’t mean to be ungrateful,<o:p></o:p></div>
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For much have I been given,<o:p></o:p></div>
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But my mind has many questions,<o:p></o:p></div>
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So, toward answers I am driven.<o:p></o:p></div>
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<br /></div>
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Don’t blame Him for my fate,<o:p></o:p></div>
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For, indeed, He owes me nothing,<o:p></o:p></div>
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Still I cannot help but wonder,</div>
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Why the blessings are not coming.<o:p></o:p></div>
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<br /></div>
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One touch and I would heal,<o:p></o:p></div>
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One thought, my troubles gone,<o:p></o:p></div>
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One glance in my direction,<o:p></o:p></div>
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My misery withdrawn.<o:p></o:p></div>
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<br /></div>
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I assume there is a lesson,<o:p></o:p></div>
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Though many I have learned,<o:p></o:p></div>
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What am I still missing?<o:p></o:p></div>
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For enlightenment I yearn.<o:p></o:p></div>
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<br /></div>
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The foundations He has laid,<o:p></o:p></div>
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So, who am I to question?<o:p></o:p></div>
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Yet ever the notion lingers,<o:p></o:p></div>
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And that is my confession.<o:p></o:p></div>
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Onward ever I go,<o:p></o:p></div>
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Forward where He leads me,<o:p></o:p></div>
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A pathetic worm before Him,<o:p></o:p></div>
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A sinner with but one plea.<o:p></o:p></div>
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<br /></div>
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That this life of ill and struggle,<o:p></o:p></div>
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Is only but a moment,<o:p></o:p></div>
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Pale shadow of the next world,<o:p></o:p></div>
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One free of lament and torment.<o:p></o:p></div>
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All my hope in my Creator,<o:p></o:p></div>
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That my blind eyes one day will see,<o:p></o:p></div>
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The intricate web he weaves,<o:p></o:p></div>
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His eternal love for me.</div>
<br />Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-34942451639976435662019-09-08T12:41:00.000-07:002019-09-08T12:41:58.680-07:00DANCE WITH ME HERE<br />
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Dance with me here for a time,</div>
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<span style="mso-bookmark: _Hlk18848587;">Memories fresh in my
mind,<o:p></o:p></span></div>
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<span style="mso-bookmark: _Hlk18848587;">Opened the door just
a crack,<o:p></o:p></span></div>
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<span style="mso-bookmark: _Hlk18848587;">Caught off guard by
what does remind.<o:p></o:p></span></div>
<span style="mso-bookmark: _Hlk18848587;"></span>
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<br /></div>
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Of the life that once came before,<o:p></o:p></div>
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Of the beauty I chose to ignore,<o:p></o:p></div>
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Don’t know what you’ve lost,<o:p></o:p></div>
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Never counted the cost,<o:p></o:p></div>
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Couldn’t know the horrors in store. <o:p></o:p></div>
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Laughter and lightness long-gone,<o:p></o:p></div>
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Days upon end without dawn,<o:p></o:p></div>
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Heartache and longing they grip,<o:p></o:p></div>
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Unspoken words never passed from my lips,<o:p></o:p></div>
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Feeling I’m forgotten, don’t belong.<o:p></o:p></div>
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Stuck in slow-motion and frozen in time,<o:p></o:p></div>
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Reminiscences serve to chastise and bind,<o:p></o:p></div>
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Let them go, ease my grasp, let them flow,<o:p></o:p></div>
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Caught up in sorrow, regret, and turmoil,<o:p></o:p></div>
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Can’t progress nor neither rewind.<o:p></o:p></div>
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Am I condemned to a life of remorse – <o:p></o:p></div>
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Ever-searching, ever-roaming, off course?<o:p></o:p></div>
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Will the reminders remain?<o:p></o:p></div>
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Am I unable to change?<o:p></o:p></div>
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Is there nothing more to look toward?<o:p></o:p></div>
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Of my past, only a remnant remains,<o:p></o:p></div>
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But it ties and it taunts, fills with pain,<o:p></o:p></div>
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Haunted by opportunities missed,<o:p></o:p></div>
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Too numerous are they to all list,<o:p></o:p></div>
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Can I untangle and loosen the chains?<o:p></o:p></div>
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I tell myself all the right phrases,<o:p></o:p></div>
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Offer encouragement, hope, and fresh praises,<o:p></o:p></div>
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But deep down in my heart,<o:p></o:p></div>
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Where I am broken apart,<o:p></o:p></div>
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Wonder if the truth does betray this.<o:p></o:p></div>
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What more can I do to keep the faith – <o:p></o:p></div>
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Ensure my hope and beliefs aren’t misplaced?<o:p></o:p></div>
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Ever-seeking, ever-pleading, never ceasing,<o:p></o:p></div>
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My plight, my daunting path, never easing,<o:p></o:p></div>
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On my knees beseeching, pursuing, begging for mercy and
grace.<o:p></o:p></div>
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I’ll trudge forward, much as I always have,<o:p></o:p></div>
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Count my blessings, accept the good and the bad,<o:p></o:p></div>
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But what lesson, what message, have I missed?<o:p></o:p></div>
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Why do I continue to resist and insist?<o:p></o:p></div>
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If this is for gain, for glory, am I not glad?<o:p></o:p></div>
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I cannot help but question the plan,<o:p></o:p></div>
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A mere human, not God above man,<o:p></o:p></div>
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But my fate’s not my own,<o:p></o:p></div>
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A life not mine but on loan,<o:p></o:p></div>
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Lost and helpless, it’s all in Your hands.<o:p></o:p></div>
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<br /></div>
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You laid the foundations and offered a door,<o:p></o:p></div>
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Who am I to question or demand any more?<o:p></o:p></div>
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Hear my cries, see my plight,<o:p></o:p></div>
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Soothe my soul, dry my eyes,<o:p></o:p></div>
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Fill me up, overflowing, I implore.<o:p></o:p></div>
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<br /></div>
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Dance with me here for a time,<o:p></o:p></div>
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Memories fresh in my mind,<o:p></o:p></div>
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Opened the door just a crack,<o:p></o:p></div>
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Caught off guard by what does remind.<o:p></o:p></div>
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<br />Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-69175439293727970382019-07-15T04:13:00.003-07:002019-07-15T04:13:31.723-07:00Gastroparesis Awareness Month August 2019: #RealGP<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqTjJ8qRCWkue0eaFONfJ_XVyscZSeFGInhKRV4FikaHxd-e42v3S0Xl7oLGI1_nw9rw3og7dLigz44CQZGFOFgPWyACw_h6pW0Hab6jF5SZzXeNEkLPfK7krgYipjAEqeFmRgbBsQF7wr/s1600/Real+GP-Photo-Melissa.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqTjJ8qRCWkue0eaFONfJ_XVyscZSeFGInhKRV4FikaHxd-e42v3S0Xl7oLGI1_nw9rw3og7dLigz44CQZGFOFgPWyACw_h6pW0Hab6jF5SZzXeNEkLPfK7krgYipjAEqeFmRgbBsQF7wr/s400/Real+GP-Photo-Melissa.jpg" width="400" /></a></div>
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<div style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
August is Gastroparesis Awareness Month, and this year, we are launching a <a class="_58cn" data-ft="{"type":104,"tn":"*N"}" href="https://www.facebook.com/hashtag/realgp?source=feed_text&epa=HASHTAG&__xts__%5B0%5D=68.ARCE0MT4f9MrV94ReW_6XPWdC2KbDtI78yJVpNdZoRmANsZic5kcP0l9Bv25YFD_dmk0YjvqjQxGw0_qv2Q41D29Qz8d04H6usfW4mLgAZg9mJ7To7VqGIoGPCgXrpUR5h2uaBNP7ZO94JQd1AmbnooFfRZw4Zgb1RIwaPxGi2RMxwv8xSywrQ6WsufmyOP6oyqofSLz--1_bgTasqoCjIbZqfdGGqnKG-E7cnJUFevSgOdSyFgKBP5HyUUXRuiE9muBTf1LIbBBeBVRo6ood-pVot_sDgN03LaJlKbzQkKAUgKJn-sm-RER3KvnTfTdESs7oYg6IK4nGFgtos1LGQ&__tn__=%2ANK-R" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;"><span class="_5afx" style="direction: ltr; font-family: inherit; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #365899; font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">RealGP</span></span></a> campaign to help highlight some of the issues in our community.</div>
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<div style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
The #RealGP campaign seeks to dispel common myths surrounding Gastroparesis and illustrate the true physical, mental/emotional, and financial impact of this illness upon patients and their loved ones.</div>
<div style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
<br /></div>
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To make this effort a success, we will need your help! Your contributions can take several forms:</div>
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<div style="font-family: inherit; margin-bottom: 6px;">
</div>
<ul>
<li><div class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">
<div style="font-family: inherit; margin-bottom: 6px;">
Photos depicting your GP reality</div>
</div>
</li>
<li><div class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">
Statements and memes contrasting common myths (such as all GP patients are thin) with your personal experience</div>
</li>
<li><div class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">
Stories of struggle with issues most people do not see (making the "invisible," visible, in other words)</div>
</li>
<li><div class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">
Discussion of the mental/emotional aspects of this illness which are rarely (or poorly) addressed</div>
</li>
<li><div class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">
Examples of financial hardships -- insurance, medical care, prescription costs, lack of employment, difficulty establishing disability, etc.</div>
</li>
</ul>
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<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
<span style="font-family: inherit;">The manner and subject of your participation are only limited by your imagination, and this list is not exhaustive. P</span><span style="font-family: inherit;">lease use the hashtag "#RealGP when sharing. Be creative and help us make an impact for our GP community!</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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Photo courtesy of Ms. Corina Castillo. If you would like a customized #RealGP frame, please comment on our community page post at <a href="https://www.facebook.com/GastroparesisFighting4Change/photos/a.1553567304910841/2359457690988461/?type=3&theater" style="background-color: transparent;">https://www.facebook.com/GastroparesisFighting4Change/photos/a.1553567304910841/2359457690988461/?type=3&theater</a>.</div>
</div>
Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-72980392782098258602019-07-10T12:12:00.000-07:002019-07-10T12:12:50.051-07:00VIRTUAL ADVOCACY DAY<br />
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<b>When: July 23,
2019</b></div>
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<b>Where: Anywhere in
the US<o:p></o:p></b></div>
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<b>Purpose: Support
HR 3396<o:p></o:p></b></div>
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This July 23, 2019, the Gastroparesis community invites you to support the millions of patients and their loved ones affected by F<span style="background: white; color: #333333;">unctional Gastrointestinal
and Motility Disorders. <o:p></o:p></span></div>
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<span style="background: white; color: #333333;">These
disorders, which include Gastroparesis, Irritable Bowel Syndrome, Dyspepsia,
GERD, and numerous other conditions, are frequently debilitating, and sometimes
life-threatening, and they impact the physical, mental, emotional, social, and
financial well-being of those affected. FGIMDs are chronic illnesses which
impact people of all ages, genders, races, and socioeconomic backgrounds; yet there
are often few (or no) effective treatments or cures, and the limited available
treatment options come with serious side effects and risks.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="background: white; color: #333333;">Please contact
your congressional representatives in the House and request that they cosponsor
the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (H.R. 3396) and ask your senators to introduce a companion bill.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="background: white; color: #333333;"><br /></span></div>
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<span style="background: white; color: #333333;">This
nonpartisan, budget-neutral legislation would promote awareness and expand
educational efforts on our behalf and direct much-needed research funds to our
communities so that we might finally be granted better, more effective
treatments or cures. </span>You can find
the text of the bill at <a href="https://www.congress.gov/bill/116th-congress/house-bill/3396">https://www.congress.gov/bill/116th-congress/house-bill/3396</a>.</div>
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<span style="background: white; color: #333333;">You may call,
write, or e-mail your representatives.<span style="mso-spacerun: yes;">
</span>You can find the names and contact information of your representatives
at </span><a href="https://www.govtrack.us/congress/members">https://www.govtrack.us/congress/members</a>.<span style="mso-spacerun: yes;"> </span>Please consider the following talking points
when contacting your representatives: </div>
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</div>
<br /><ul>
<li> Identify yourself as a constituent and be direct about the purpose of your call/letter/e-mail. Ask to speak with the representative’s healthcare advisor if possible. </li>
</ul>
<div>
<ul>
<li>Mention the bill by name and/or number and let your representatives know its purpose.</li>
<ul>
<li>Briefly tell your personal story.</li>
<li>Mention that FGIMDs affect millions of patients and their loved ones.</li>
<li>Explain that the bill would direct potentially life-saving research funds to these communities in the hopes of finding effective treatments and cures and create “Centers of Excellence” designed to educate and promote awareness of these devastating illnesses.</li>
<li>Point out that the legislation is budget-neutral (or does not incur additional costs or deficits). </li>
</ul>
</ul>
</div>
<div>
<ul>
<li>Thank your representative for his/her time and consideration and make certain you have left your contact information in case you can provide additional input.</li>
</ul>
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If your representative would like to pursue co-sponsorship,
you can direct your representative to contact Mr. Ben Steinhafel, in Rep. James
Sensenbrenner’s office, at <a href="mailto:ben.steinhafel@mail.house.gov">ben.steinhafel@mail.house.gov</a>
and/or Ms. Carol Frauman, in Rep. Gwen Moore’s office, at <a href="mailto:caroline.frauman@mail.house.gov">caroline.frauman@mail.house.gov</a>.<span style="mso-spacerun: yes;"> </span></div>
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<b><span style="text-transform: uppercase;">Thank you so much for lifTing YOUR VOICES!<o:p></o:p></span></b></div>
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<b><span style="text-transform: uppercase;"><br /></span></b></div>
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Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-3986257992876144232019-06-21T08:20:00.000-07:002019-06-21T08:20:32.216-07:00MARCH ON WASHINGTON, DC - VENUE CHANGE!<div style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
We have made the difficult decision to move the rally to an indoor venue (details below). We had to make that decision today in order to have adequate time to notify our vendors, our speakers, the Capitol Police, and our participants and to secure the new location. We are fortunate to have found an indoor venue, as adequate and appropriate spaces are quite difficult to snag at this late date and are very pricey.</div>
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<br /></div>
<div style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px; margin-top: 6px;">
We have been watching the weather forecast and spe<span class="text_exposed_show" style="display: inline; font-family: inherit;">aking to our DC vendors, and even though we cannot be certain there will be thunderstorms (and this can change in an instant, of course), we feel there is considerable risk of bad weather. In the case of rain or storms, we would have to cancel the rally entirely as our vendors would not be able to deliver some of our equipment and we would be putting attendees at unreasonable risk. And, honestly, there comes a point at which attendance drops, foot traffic would be scarce, and attendees would simply be so miserable that the benefit of remaining outdoors would be small.</span></div>
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<div style="font-family: inherit; margin-bottom: 6px;">
Unfortunately, the one thing we absolutely cannot control is the weather, try as we might. My apologies that we cannot pull off this event as initially intended. But please rest assured that we will do our best to still make this a memorable and significant event. This changes nothing in regard to our meetings with our legislators, the IFFGD conference, or the rest of the event schedule, and we are hoping for the strongest impact possible.</div>
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<br /></div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
The indoor location does offer some advantages. Conditions are more comfortable for participants, as it is dry, spacious, air-conditioned, and offers on-site restrooms, chairs, tables, and beverage sales. We also have access to several screens on which we will loop a video of photos provided by our community. We believe this venue offers much and that we will still have a strong impact.</div>
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<br /></div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
We will be sending out an e-mail to all registrants notifying them of the change, but we need your help in getting out the message.</div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
<br /></div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
Here is the <b>NEW VENUE LINK:</b> <a data-ft="{"tn":"-U"}" data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fivycitysmokehouse.com%2F" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://ivycitysmokehouse.com/</a>. We will be in the concert section and will also have access to an outdoor patio should the weather clear.</div>
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<br /></div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
<b>THANK YOU ALL FOR YOUR PATIENCE AND UNDERSTANDING! SEE YOU IN DC!</b></div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
<b><br /></b></div>
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Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-7065002623715114722019-03-18T05:32:00.002-07:002019-03-18T05:32:50.350-07:00GASTROPARESIS MARCH ON WASHINGTON<br />
<div class="MsoNormal">
The Gastroparesis community will host an awareness rally on
June 24, 2019, from 2:30-5:30 PM ET at Union Square (behind the Capitol
Reflecting Pond) on the Capitol Grounds of Washington, DC.<span style="mso-spacerun: yes;"> </span>Please join us as we shed light on our
illness and promote better understanding and proper care.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
The National Institutes of Health (NIH) estimates 5 million
or more people live with gastroparesis, but, despite the numbers, gastroparesis
is considered an “orphan” disease due to the lack of resources, support, and
attention it garners. Gastroparesis is little-known to the public and
often misunderstood by healthcare professionals, researchers, legislators, and
others who impact our care. And, so, it is imperative that we, as a
community, lift our voices in a united front to raise awareness and bring about
much-needed change.<o:p></o:p></div>
<div class="MsoNormal">
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Gastroparesis, or “paralysis of the stomach,” is a
gastrointestinal motility disorder in which the stomach muscles fail to
contract and move food through from the stomach to the intestines at the proper
rate.<span style="mso-spacerun: yes;"> </span>It is a slowing of the
stomach-emptying process marked by symptoms such as nausea, vomiting, GERD (or
acid reflux), early satiety, extreme weight fluctuations, bloating, and
stomach/abdominal pain, and it often results in debilitating and sometimes
life-threatening complications such as malnourishment, dehydration, esophageal
damage, erratic blood sugars, and digestive tract blockages.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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The most common known cause of this condition is diabetes,
which accounts for about one-third of the cases. Other known causes of gastroparesis
include neurologic disorders such as Multiple Sclerosis and Parkinson’s
Disease, connective tissue disorders, complications resulting from surgeries,
various medications (such as some narcotics and antidepressants), and direct
damage to the Vagus nerve. Most cases of gastroparesis, however, are
labeled “idiopathic,” meaning there is no known cause. <o:p></o:p></div>
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<br /></div>
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Currently, there is no consistently safe, reliable, and
effective treatment for gastroparesis – and there is no cure.
Available treatment options include often ineffective surgeries;
medications which carry the risk of serious side effects; feeding tubes or
total parenteral nutrition (TPN); and dietary changes (liquids or soft foods),
which often do not provide relief.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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For additional information regarding gastroparesis, please
contact the International Foundation for Functional Gastrointestinal Disorders
(IFFGD) at <a href="http://www.iffgd.org/">www.iffgd.org</a> or the Association
of Gastrointestinal Motility Disorders (AGMD) at <a href="http://www.agmd-gimotility.org/">www.agmd-gimotility.org</a>. <o:p></o:p></div>
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Register at https://bit.ly/2SXhaSs. For additional details and inquiries regarding the “Gastroparesis
March on Washington” rally, please contact Melissa Adams VanHouten at <a href="mailto:gpmarchondc@gmail.com">gpmarchondc@gmail.com</a>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<br />Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-12976204367944891902019-03-15T13:33:00.002-07:002019-03-15T13:40:20.933-07:00SHADOWLAND<div class="MsoNormal">
We are not among the living,<o:p></o:p></div>
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But we are neither among the dead,<o:p></o:p></div>
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Hovering somewhere in-between,<o:p></o:p></div>
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Where all souls fear to tread. <o:p></o:p></div>
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Blinded by the sparkling light,<o:p></o:p></div>
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They are oblivious to our pain,<o:p></o:p></div>
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They have banished us to the shadows,<o:p></o:p></div>
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And it is here we must now remain.<o:p></o:p></div>
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We reach out toward the warmth,<o:p></o:p></div>
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Of our long-abandoned lives,<o:p></o:p></div>
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But our ice-cold touch is rebuffed,<o:p></o:p></div>
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And sweet mercy is denied.<o:p></o:p></div>
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We can no longer feel the sun,<o:p></o:p></div>
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Though its light lingers just behind,<o:p></o:p></div>
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We can no longer grasp the morning,<o:p></o:p></div>
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So, to the darkness, we are resigned.<o:p></o:p></div>
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Relegated to this bleak blackness,<o:p></o:p></div>
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This punishment for what crime?<o:p></o:p></div>
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Exiled to this barren wasteland,<o:p></o:p></div>
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Sentenced without reason or rhyme. <o:p></o:p></div>
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Oh, to be among the Others!<o:p></o:p></div>
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To again taste life’s tender embrace,<o:p></o:p></div>
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To openly dance in the sunlight,<o:p></o:p></div>
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To feel it shine upon our face!<o:p></o:p></div>
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To turn our downward glance upward,<o:p></o:p></div>
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To bask in the glorious glow,<o:p></o:p></div>
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To spin in the radiant rays,<o:p></o:p></div>
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To relish it long and slow.<o:p></o:p></div>
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Mere memories long-remembered,<o:p></o:p></div>
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Shades of what might have been,<o:p></o:p></div>
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Bitter, punishing reminders,<o:p></o:p></div>
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Of that which was taken by the wind.<o:p></o:p></div>
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Set apart from what once mattered,<o:p></o:p></div>
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We are on the outside looking in,<o:p></o:p></div>
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Outcasts, outsiders, pariahs,<o:p></o:p></div>
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Ever-longing to begin life again.<o:p></o:p></div>
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When we think we have our fate mastered,<o:p></o:p></div>
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The ever-looming clouds appear once more,<o:p></o:p></div>
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Announcing their ominous presence,<o:p></o:p></div>
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And their wretchedness down again pours.<o:p></o:p></div>
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Weary of feeling worthless and hollow,<o:p></o:p></div>
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Of longing for what is long gone,<o:p></o:p></div>
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No matter how vehemently we deny it,<o:p></o:p></div>
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To our past lives, we are roused and are drawn.<o:p></o:p></div>
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We cry out in torment to the Others,<o:p></o:p></div>
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“Please, hearken and bend to our pleas!”<o:p></o:p></div>
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But we are met with indifference and silence,<o:p></o:p></div>
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Our sorrows but words in their breeze.<o:p></o:p></div>
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For while worshipping in their sunlight,<o:p></o:p></div>
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They have neglected to glance our way,<o:p></o:p></div>
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We are silhouettes too dim to matter,<o:p></o:p></div>
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As they dance through their merry days.<o:p></o:p></div>
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We brush up against their coattails,<o:p></o:p></div>
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Meager whispers in their deaf ears,<o:p></o:p></div>
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They have forgotten the sounds of us,<o:p></o:p></div>
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Mere specters who now fill them with fear.<o:p></o:p></div>
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We are ghosts which serve to haunt them,<o:p></o:p></div>
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Flickering phantoms, ethereal and pale,<o:p></o:p></div>
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Forgotten, ignored, tossed aside,<o:p></o:p></div>
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We are hidden behind the veil.<o:p></o:p></div>
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For if they acknowledged our presence,<o:p></o:p></div>
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Peered into the shadows and gazed,<o:p></o:p></div>
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Perhaps they’d see regrets and transgressions,<o:p></o:p></div>
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Or be forced to face the forms they might take.<o:p></o:p></div>
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Yet, we cannot wholly blame the Others,<o:p></o:p></div>
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For their world was once likely our own,<o:p></o:p></div>
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We, too, looked away from the darkness,<o:p></o:p></div>
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Neglected the unfortunate forgotten souls.<o:p></o:p></div>
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But now that we are at once among them,<o:p></o:p></div>
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How we long to feel the light of day,<o:p></o:p></div>
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To awaken from this endless cruel nightmare,<o:p></o:p></div>
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Is this a dream which is too far away?<o:p></o:p></div>
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Are we forever by the chasm separated? <o:p></o:p></div>
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Are we indeed past the point of no return?<o:p></o:p></div>
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Are the matters which divide and conquer,<o:p></o:p></div>
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So vast we cannot breach them, cannot learn?<o:p></o:p></div>
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Our hope, our glimmer, and our passion:<o:p></o:p></div>
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From their stupor, they’ll someday awake,<o:p></o:p></div>
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And with no second thoughts or backward glances, <o:p></o:p></div>
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They will rescue us from our dark fate.<o:p></o:p></div>
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Save us from this desert, this Shadowland, <o:p></o:p></div>
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Where we are something just shy of whole,<o:p></o:p></div>
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Envelop us with their gentleness and grace,<o:p></o:p></div>
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Bring light to our anguished, daunted souls.<o:p></o:p></div>
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Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-17822032183828154002019-02-21T06:05:00.002-08:002019-02-21T06:05:37.897-08:00COLLABORATIONToo many in the outside world see my online community as "just" a Facebook group. That must change. Too many providers and other care-related bodies have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions there. They miss the benefits -- to both us and them. <br /><br />Our #Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. They are not stops for "bashing" physicians, although that does occur. They are not hosts of misinformation, although we do combat that. And they are not "negative," pits of despair, although we see many who lack hope.<br /><br />Facebook groups offer far more. They are sources of physical, emotional, mental, social, and spiritual support. They are the center of information-sharing and advocacy efforts. They are our best attempt at getting out accurate information regarding the causes, effects, and available treatments and resources for our illness. They are a one-stop shop where we treat the person as a whole and not simply as a diagnosis. They are self-help and education communities. They are the light at the end of a sometimes very dark tunnel and a source of encouragement and hope for those who the medical system and families and friends have failed. They are "home" to both many who are isolated and lacking basic knowledge and support and to those who wish to offer such knowledge and support. <br /><br />And, so, I encourage healthcare professionals, researchers, legislators, the media, pharmaceuticals, insurance companies, loved ones, and the general public to lose your preconceived notions and open your eyes to the possibilities for collaboration. We are not your enemy and we need your help. <br /><br />There are currently 23,500 members in our largest Gastroparesis support group, all longing for answers and beseeching you for assistance, and I am guessing we closely reflect and represent many of the estimated 5 million GP patients outside social media. Hear our cries and begin partnering with us to develop solutions to our common problems and start meeting our unmet needs! We seek partnerships in our quest to thrive, despite the cruel nature of this illness.<br /><br />My goal from the very beginning has been two-fold: to tell our stories and expose the problems we face and to find solutions to those problems. I do not post and plead simply to complain. So, if you can assist us, please contact me via private message here on Facebook or via email at gpfightingforchange@gmail.com and I will be glad to discuss the possibilities. There are many opportunities for your further involvement in our community. If you are a physician, researcher, legislator, or other interested party, we welcome your presence in this community, and we long for open and honest (but kind) conversations and collaboration. I am convinced that, working together, there is no problem we cannot resolve.<br /><br /><div>
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Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-3153455754812467912019-01-15T06:37:00.003-08:002019-01-15T06:37:58.281-08:00Self-RespectWho cares what other people think? Well, probably you. It would take a pretty cold soul to completely ignore the opinions of others, especially family and other loved ones, and pretend that words never harm. Hateful words sometimes leave deep wounds and scars. This is an especially common issue in the Gastroparesis community, as those close to us, who should be our biggest source of support, sometimes question our diagnosis and symptoms and often refuse to accept our quality of life and treatment choices.<br /><br />But it is possible to overcome the pain caused by the thoughtless remarks and actions of others and heal. You can set aside the judgment of those who presume to know what is best for you, allay your own guilt and shame, and recognize that no other person, no matter how intimately connected, can feel exactly what you feel or truly understand what you endure. You are unique -- and no other living human shares your exact same thoughts, emotions, and experiences.<br /><br />You do not need the permission or approval of others to live your life, and you can choose not to be manipulated or limited by those who seek to direct your path. You have complete control over how you respond to hurtful remarks and actions, and, though the harsh opinions of loved ones might sting, you can be certain they cannot bind you. <div>
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This is YOUR life, and you only get one. Make it count.</div>
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Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0tag:blogger.com,1999:blog-1820071668141792537.post-50754404083976134492018-12-03T06:08:00.002-08:002018-12-03T06:08:38.148-08:00ARE YOU LISTENING?<div class="separator" style="clear: both; text-align: center;">
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<br />A new study indicates that about 40-60% of patients do not fully disclose and/or lie about health information when seeing their physicians.<br /><br />Now, there are a number of reasons cited in the study (article links below) as to why patients behave as they do and how physicians might help the situation, but, quite frankly, I find it laughable. It really is not that complicated. I offer the following stories as illustrations of why patients might be unwilling to be "upfront" with information and/or hesitant to have open discussions with their health care providers...<br /><br />* A while back, a member of our Gastroparesis support group posted that when she told her doctor she had eaten a food which was "off-limits" for Gastroparesis patients, the doctor yelled at her, focused solely on this one event (which was not her typical behavior and, in fact, a rare occurrence), and refused to address any other issues or possibilities which may have caused the latest setback in her health.<br /><br />* Another group member's physician rejected her report of the number of calories and types of food she was consuming because she was overweight and not losing. He openly accused her of lying, informed her she could "stand to lose a little weight," and refused to consider additional medications or procedures.<br /><br />* A friend mentioned on a patient form that she had taken opioids -- for a brief time, several years ago -- and the doctor refused to acknowledge the brevity of her use or length of time which had passed and attributed her slow motility to "drug use" rather than exploring other, more reasonable explanations.<br /><br />* When I described my pain to my motility specialist, he informed me, "There is no pain with Gastroparesis," and then argued with me about the nature and location of my pain. He continually downplayed my concerns, refused to consider the possibility that he could be mistaken, and blithely dismissed symptoms I wished to emphasize/prioritize because he felt other symptoms were more significant to my quality of life.<br /><br />* When one group member politely questioned her care and eventually complained (through the proper channels and according to established procedures), her physician promptly dismissed her from his care. She was later "blackballed" from the entire medical group -- ALL providers in that particular health system and not simply GIs.<br /><br />This is but a brief sampling of events which readily come to mind. I can produce thousands of similar stories -- and far worse. Daily, my group members post that they would rather suffer and even die before returning to their physician (or the ER). They speak of weeping in their GI's office because the good doctor refused to listen or express concern about their worsening condition. They speak of being scolded for minor transgressions, of doctors who refuse to believe they are struggling, who outright accuse them of inventing or exaggerating symptoms, who label them as hypochondriacs or drug seekers. They are frequently told, "There is nothing more we can do." They are "taught" in every possible way that they will not be taken seriously and to abandon hope of effective treatments or cures. Why bother, then, to have further discussions?<br /><br />Patients are routinely questioned, misunderstood, patronized, dismissed, shamed, mocked, scolded, or in some other way belittled. Many are afraid to speak up lest they are blackballed or unjustly punished. They downplay or overstate, hide, or even lie about symptoms in the hopes they will finally be taken seriously and receive genuine help.<br /><br />Good Doctors and Esteemed Researchers, this is not rocket science. Approach patients with an open mind, a willing heart, a listening ear, and helping hands. Assume they genuinely experience the symptoms they relay to you and that they truly wish to be healed. Stop pretending there is a great mystery to it all and lose the tired excuses. Treat your patients with respect, dignity, and compassion, and, only then, will they feel comfortable engaging in open communication!<br /><br />**************************************************************************<br /><br />Related Articles:<div>
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<a href="https://www.mdlinx.com/gastroenterology/top-medical-news/article/2018/11/30/7550223?fbclid=IwAR1GP35H-2i5gd9sCw-LmlFBA6SX5r9tHx6yV_3II6WvZorTkNer0QKXV08#" target="_blank">https://www.mdlinx.com/gastroenterology/top-medical-news/article/2018/11/30/7550223?fbclid=IwAR1GP35H-2i5gd9sCw-LmlFBA6SX5r9tHx6yV_3II6WvZorTkNer0QKXV08#</a></div>
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<a href="https://www.medpagetoday.com/publichealthpolicy/generalprofessionalissues/76631" target="_blank">https://www.medpagetoday.com/publichealthpolicy/generalprofessionalissues/76631</a></div>
Melissa Adams VanHoutenhttp://www.blogger.com/profile/14403594815255808456noreply@blogger.com0