tag:blogger.com,1999:blog-1743781134888622502024-03-14T12:30:13.754-05:00Beautifully Afflicted~ My Invisible Disability Story ~Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-174378113488862250.post-88084836590616444952020-02-25T08:51:00.007-06:002022-04-21T06:36:01.344-05:00"I" Didn't Die<div class="_5pbx userContent _3576" data-ft="{"tn":"K"}" id="js_4" style="caret-color: rgb(29, 33, 41); color: #1d2129; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; line-height: 1.38; margin-top: 6px;">
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I didn't die.<br />
I lived.<br />
A piece of my heart and soul will always remain with my late husband.<br />
But the bottom line is that I didn't die.<br />
He did.<br />
The life we had together reached its final chapter.<br />
The dreams we hadn't gotten around to processing will forever remain unfilled.<br />
But yet, I am still alive. </div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
My life is forever changed. </div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
My grief isn't more or less than that of anyone else going through a similar trauma. It is simply different. It is uniquely mine. Just as every relationship is different, the grief at the end of every relationship is different. Sometimes my grief sits quietly in the background, acting as a silent observer of my life. Sometimes my grief is a turbulent ocean, and it is ALL I can do to keep swimming... to keep breathing... to keep my head above the grief.<br />
But I do.<br />
Not because I'm special or because I'm strong, but because I am the owner of my grief. My grief isn't any more valuable than the next person's.<br />
But it is unique.<br />
It's mine.</div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
My pain is soul shattering.<br />
It can be so devastating that at times the level reaches beyond pain and turns to mind numbing calmness. It's allowed me to notice pain in others. It's provided me with more tolerance for perceived issues while at the same time less patience in dealing with nonsense. It's allowed me to see that the childhood adage that "Life's not fair," was one of the truest lessons we learned. And that it is a lesson we are continuing to learn. Life may not be fair, but the only one I can live is mine. And so I do.</div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
I've learned the dangers of the what-ifs.<br />
What if I had noticed something?<br />
What if I had checked on him?<br />
What if I had acted differently, or spoken differently, or loved differently, or had just done it all differently?<br />
Would he still be here?<br />
Would we still be writing our story?<br />
Or would the outcome be the same? Yet different. Because we would have been different. Our relationship would have been different. In indulging this line of thought, I negate the very things that made us, "us". Life happens. </div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
What if it had been me instead of him? I'd want him to continue on and create a life rich enough for both of us. To experience more of the dreams. To know joy and happiness...<br />
I'd want him to continue his story.<br />
While keeping the chapters that were us.<br />
And letting go of enough to create chapters that don't contain me, yet somehow in my own vain way, may remind others that I existed. That I mattered. That our chapters were worthy of the pages they are written on.</div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
And so I will wake up to face another morning.<br />
I will smile at people I see.<br />
I will watch elderly couples holding hands and know that it will never be us.<br />
And I will continue on.<br />
I will embrace new opportunities and chances.<br />
I will try to live a life worth living for both of us. </div>
<div style="display: inline; font-family: inherit; margin-top: 6px;">
Because once again, I have changed.<br />
I have grown.<br />
I am moving in a new scary direction.<br />
Not down a path I would have chosen on my own, but one that I was tossed upon, and am learning to navigate, one twist and turn at a time...</div>
</div>
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-70281807014777940182020-02-25T08:51:00.006-06:002022-04-21T06:35:17.137-05:009-13-2018<div style="text-align: center;"><br />
<span face=", , "blinkmacsystemfont" , ".sfnstext-regular" , sans-serif" style="background-color: white; color: #1d2129; font-size: 14px;"><br /></span>
<span face=", , "blinkmacsystemfont" , ".sfnstext-regular" , sans-serif" style="background-color: white; color: #1d2129; font-size: 14px;">On Thursday, September 13, 2018 </span><a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/user.php?id=100000455032515&extragetparams=%7B%22__tn__%22%3A%22%2CdK-R-R%22%2C%22eid%22%3A%22ARAvCRKF0Gjcnq6P28MUzcDmUepst6dW1BydBMfGak4mRfyhj_fxPj8MYF0TYGTgdOaIbMaqaunrnJDp%22%2C%22fref%22%3A%22mentions%22%7D" href="https://www.facebook.com/jeff.oldaker.9?__tn__=%2CdK-R-R&eid=ARAvCRKF0Gjcnq6P28MUzcDmUepst6dW1BydBMfGak4mRfyhj_fxPj8MYF0TYGTgdOaIbMaqaunrnJDp&fref=mentions" style="color: #365899; cursor: pointer; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; text-decoration: none;">Jeff Oldaker</a><span face=", , "blinkmacsystemfont" , ".sfnstext-regular" , sans-serif" style="background-color: white; color: #1d2129; font-size: 14px;"> went to heaven. I'm pretty sure most everybody knows this now and I'm not blindsiding anyone. My heart is completely shattered. My world is forever changed. Jeff was very active and only in his 40's, and he suffered a fatal heart attack. Thank you everyone for all your kinds words! Hug your family tight, you never know when it'll be the LAST TIME.......</span></div>
<br />Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-30385025066017728132020-02-25T08:51:00.002-06:002020-02-25T08:51:44.168-06:00<a data-ft="{"tn":"-U"}" data-lynx-mode="origin" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.ee-fh.com%2Fm%2Fobituaries%2FJeffrey-Oldaker%2FMemories%3Ffbclid%3DIwAR0MRsuxIVIZzwXcckwksN7AdYIxdjpwRQuaw9h4Lk2zo72VGCEW0dHAOnA&h=AT1R5WJJELKjpN8qIirnl5EeHQmAAUTTnqrhknAG6iqdYkll7PXodoUdfmiBWM19KKc8XetIJCuMW0R3fI5pRQLRmAMSsSobQE4b7JI0sue_yPipXZeJfKsgp8Bb6S1VFEoLnI-718yvQFHiqA6jeI_S0eTO5c1rmcRjxGuHMeeAhg" href="https://www.ee-fh.com/m/obituaries/Jeffrey-Oldaker/Memories?fbclid=IwAR0MRsuxIVIZzwXcckwksN7AdYIxdjpwRQuaw9h4Lk2zo72VGCEW0dHAOnA" rel="noopener nofollow" style="caret-color: rgb(255, 255, 255); color: inherit; cursor: pointer; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 30px; font-weight: bold; margin-bottom: 0px; margin-top: 0px; text-align: center;" target="_blank">https://www.ee-fh.com/m/obituaries/Jeffrey-Oldaker/Memories</a>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-57622467162426906812019-03-04T10:30:00.001-06:002019-03-04T10:30:00.577-06:0012/19/17 Jeff Oldaker 300 Game<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/nM8YUQ-Ro0s" width="480"></iframe>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-90579065137951894512016-10-31T09:18:00.000-05:002016-10-31T09:18:53.796-05:00APPROVED, Finally!!!<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Jeff came home from work on a HOT August afternoon</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">and grabbed the mail like he always does. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I'm sitting at the table out by the pool on our gorgeous deck. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">He goes inside, </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">then comes out with a letter in his hand. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">When I saw the size of the envelope, </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I instantly {<i>Hoped</i>} knew exactly what it was. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">And when he handed it to me </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i>I just froze...</i></span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I let it sit a few minutes </span><span style="font-family: times, 'times new roman', serif; font-size: large;">before opening it...</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Let me back up for a minute.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I stalk my mailman.</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">When I hear him driving down our street</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I almost ALWAYS meet him at the curb </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">...<b><i>and he knows why</i></b>. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">He saw me outside by the pool, </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">we both waived. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">But this time he did something unusual, </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">he honked when he put the mail in the mailbox... </span><span style="font-family: "times" , "times new roman" , serif; font-size: large;"> </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">It was his way of telling me he just delivered </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">what I had been waiting for... </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Knowing Jeff would be pulling in at any moment, </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I just waited for him to get it.</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: times, times new roman, serif; font-size: large;"><b><i>I WAS SCARED,</i></b></span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i><b>I KNEW IT WAS HERE</b></i></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">So there I sit with the letter in front of me.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Hesitant to open it BUT dying to know the outcome...</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i><br /></i></span>
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i>DEEP BREATH </i></span><br />
<br /></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Jeff, in the meantime, has walked away </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">giving me time to read it. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">He could tell when he handed it to me that I was stunned...</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I open it...</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"> I don't even bother to pull the entire letter out. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I just look at the top of page 2. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i><b>BECAUSE I KNOW</b></i> </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">exactly where the decision is...</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I screamed, <b><i>"YES"</i></b> </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">so loud my neighbor's could hear it!!!</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">...and then I started to cry.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">Jeff knew right then and there that I was approved, </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">he came over and hugged me. </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I just sobbed in his arms for about 15 minutes.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>FINALLY...</i></b></span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">after nearly a 6 year battle.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">I have been <b>approved</b> for Social Security Disability...</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">It <i>only </i>took<i> </i>3 lawyers, 2 court dates and going to </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i>FEDERAL COURT </i></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">for a <b>"Fully Favorable"</b> decision on Aug 26, 2016.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">AND...</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">It is approved all the way back to 2011. </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">It will be one hell of a payday when we receive that check.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b><i>THAT CHECK</i></b></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"> has blood, sweat, tears</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">and nearly a divorce written all over it.</span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><i><b>That check</b></i> </span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;">is something that Jeff and I deserve after all that we've been through with these disease's. </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><b>I CAN FINALLY EXHALE...</b></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "times" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: large;"><br /></span></div>
Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-59951672956238001842014-01-18T12:43:00.001-06:002014-01-18T12:55:22.653-06:00~Denied <div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;"><b>~ Social Security Disability Income</b></span><br />
<span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;"><i><br /></i></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;">On January 13th I received my SSDI decision in the mail.</span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">DENIED...</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;">AGAIN...</span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">The next step is to either file a claim with the federal courts or refile (start the process all over again, but with a November 2012 filing date versus a February 2011 start date </span><span class="Apple-style-span" style="font-size: large;">{original} </span><span class="Apple-style-span" style="font-size: large;">). </span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Right now I'm thinking that refilling is my best bet, as I was denied benefits again because they did not take into consideration all the problems I was left with after my Oct. 2011 brain surgery.</span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;">I have several issues from that surgery alone. Not to mention the 7 previous brain surgeries prior to Oct. 2011. 16 surgeries in all. 8 brain & 8 spine &/or abdominal surgeries. I am seeing several new Dr's now, with God only knows how many NEW Dx's I have. </span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-size: large;">When I filed in Feb. 2011 it was everything up to that point. After February, I had several more "FAILED" surgeries and a devastating October 2011 surgery that left me and my family in a very <a href="http://www.beautifullyafflicted.com/2012/02/believing.html" target="_blank"><span class="Apple-style-span" style="color: #cc0000;">difficult time</span></a>.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">So since October 2011 several things have happened with my health. My new brain shunt is for the most part "stable" it's all the problems due to all the surgeries, medications and psychological issues that left me with what is killing me now. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">{I still suffer from headaches daily, don't get me wrong. Especially when there's a weather front moving in. But it's something that I have learned to deal with as best as I can, even if it means a day in bed just to deal with the pain} </span><br />
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<span class="Apple-style-span" style="font-size: large;">I just don't want to keep messing around with the settings like my previous Neurosurgeon did and end up with overdrawn ventricles again.</span><br />
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<span class="Apple-style-span" style="font-size: large;">One of the hardest things I've had to over come is losing my family and friends. I've become so isolated, due to my health and the fact that people just don't "believe" what I'm going through is REAL because on the outside I look like a normal person, but it's a <a href="http://www.beautifullyafflicted.com/2013/05/lifes-perfect-storm.html" target="_blank"><span class="Apple-style-span" style="color: #cc0000;">war</span></a> going on inside my body and mind...</span><br />
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<span class="Apple-style-span" style="font-size: large;">~All Day</span><br />
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<span class="Apple-style-span" style="font-size: large;">~Every Day</span><br />
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-13799059524087350352013-09-04T17:52:00.001-05:002013-09-04T18:07:34.303-05:00~ The most difficult post I’ve written<div style="text-align: center;">
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>...exhale...</i></span></div>
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<span style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="color: red; font-family: Verdana, sans-serif;"><i>I keep hearing the message that one of the most helpful things any of us can do for others is to show how we have healed ourselves from personal trauma and to allow our stories to become medicine for others.</i></span></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>What lies beneath is not so easy. Perhaps sharing my deepest story, as difficult as it is to put on the Internet, will help others. (I hope so because the vulnerability is nearly unbearable. I’ve been at odds with myself for days.)</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Do you know it is estimated that 1 in 6 American women has been sexually assaulted (attempted, complete rape or incest) during her life?</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;"><i>It is being written by one.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>The chance that an incest/rape victim is reading this blog post is high.</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i> Like me I have searched the Internet for help & or answers. Maybe coming across my blog post will empower another woman to get the help she needs and FINALLY let that family skeleton out of the closet. </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>My story is a bit more complicated </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>because I was around 4 years old when the incest started. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>It was forceful and wrong. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And the more I developed into a young woman~ </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>the worse it got.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>This is no secret to my parents, however sharing the </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>family skeleton on the Internet is risky. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I have chosen to share it to help people understand that I’ve experienced dark personal trauma and I’ve been healing through therapy.</i></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><span class="Apple-style-span" style="font-size: x-small;"><b>Read about it here:</b> </span><a href="http://www.beautifullyafflicted.com/2012/02/believing.html" style="font-weight: bold;" target="_blank">~ Believing ~</a><b> </b></i></span></div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I want anyone who needs inspiration to know that peace can be attained. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>It’s also a final healing step for me to come out of the closet </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>where that </i></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>skeleton lurks.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I've binged to suffocate my feelings and did nothing to alleviate the shame of my eating behavior my whole life. But now it is time to set all of that free. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>To become the person I want to be. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>That my husband and daughter deserve me to be.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>It took me a long time to sort through what had happened with my abusers, to organize my emotional life, to seek help and to heal. I was numb for a long time, was very angry for a large chunk of my adulthood and finally arrived at acceptance... but not forgiveness...</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Where my real struggle lied was in forgiving my parents who were supposed to protect me~ the youngest child, a daughter, with three much older brothers. Then rescue, comfort and help repair me after I told….</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>or so I thought. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Professional therapy probably would have been a good start. </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>So what was done? Nothing.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i> After the incest </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I endured decades of confusion, </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>fear, anger, self-hatred and deep shame.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Have I healed?</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>At age 41, I can confidently say that I have done a lot of healing, connecting with people who accept me “as is” and not so much forgiving. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I will not forgive those </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>who do not acknowledge that what they've done is wrong </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>and have ruined not only my life but "MY" immediate family's as well. </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif; line-height: 22px;"><i>Writing publicly about the incest is a final piece of my healing process. Feeling reluctant to expose the family secret has kept me feeling ashamed of myself. Even though I am NOT the one who should be ashamed... Worrying about others’ feelings more than my own has kept me quiet. I’m ready to disempower the shame, speak my truth and let others feel how they choose to feel about it. </i></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif; line-height: 22px;"><i>It's MY happiness & MY family that deserve to be set free.</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I understand that I am not my story, however my story is a launching pad for telling the bigger story of my mental illness. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Depression, Anxiety & Dissociative Fugue </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>are all a part of the after effects of years of sexual abuse done upon to me. Not to mention by more than one family member. </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Though I’m grateful for the life lessons that have blessed me recently,</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i> I wouldn’t wish this experience to happen to anyone. </i></span></div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><span class="Apple-style-span" style="color: #111111;">Life hands each of us challenges through which we can choose to grow or grow a tumor. I’m choosing to grow. </span></i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><b><span class="Apple-style-span" style="font-size: x-small;">Read about it here:<span class="Apple-style-span" style="color: purple;"> </span></span><a href="http://www.beautifullyafflicted.com/2013/05/lifes-perfect-storm.htm" style="color: purple;" target="_blank">Life's Perfect Storm</a></b></i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>It’s taken me a long time to say that. </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I am thankful for where I am in my life today. </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I know that each moment was a step to get here, so I am thankful for the family skeleton who has been set free rather than continuing to hold me prisoner.</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span>
<span class="Apple-style-span" style="color: #333333; line-height: 26px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Finally ~</i><br /><i>There's an end to every storm</i><br /><i>Once all the tree's have been uprooted</i><br /><i>Once all the houses have been ripped apart</i><br /><i>The wind will hush~</i><br /><i>The clouds will part~</i><br /><i>The rain will stop~</i><br /><i>The sky will clear in an instant</i><br /><i>and only then~</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 26px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i> in those quiet moments</i><br /><i>after the storm do we learn~</i><br /><i>WHO was strong enough to</i><br /><i>SURVIVE...</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 26px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span></span>
<span class="Apple-style-span" style="color: #333333; line-height: 26px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I thank my husband and daughter again for NOT giving up on me!!!</i></span></span></div>
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com1tag:blogger.com,1999:blog-174378113488862250.post-27649296179383783922013-05-16T13:10:00.001-05:002013-05-21T16:16:10.493-05:00~ Life's Perfect Storm<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I was starting to get the hint that maybe my body was pissed off at me for how I had been living my life; that perhaps my body was done "whispering" when I wasn't listening. </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>And it began to SCREAM...</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>That's when Life's Perfect Storm hit</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>~ They say when your life falls apart, you either GROW or grow a tumor ~</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>In January 2012, I decided that I was done manifesting my mental, emotional and physical afflictions.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i> And instead of growing more tumors, I chose to GROW!</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>GROWING meant meeting my inner pilot light. My inner pilot light that suddenly flamed one day. A heated voice from within that started to guide me to the life I was meant to endure. </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>A heated voice that told me to, "Strip off those masks I've been wearing my whole life. Stop selling myself short. Stop trying to please everyone. Stop pressuring myself to be perfect. And quit apologizing for who I really am!" I knew deep down that this voice was my intuition, and if I don't listen to it now, I will probably end up alone. No marriage and a daughter who wishes she'd never knew me. </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>So I listened...</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Took a Leap...</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Took the Prescription...</i></span></div>
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<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>To find a Psychologist I like and to see her frequently. To get pissed off at the people who sexually abused me as a child. To get on with MY LIFE! To NOT look back. To STOP caring about the needs of others while neglecting my own. The prescription was to move the fuck on... </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Everyday I asked my inner pilot light what my body needed in order to heal and everyday I did exactly what my inner pilot light prescribed. </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>~It was medicine on my terms~</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I starting the healing process of:</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Re-kindling my marriage.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Mending a mother daughter relationship.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Not looking back.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Started to BELIEVE in myself for the first time in my life.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Starting "The Plan."</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Starting a running program.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Kicking to the curb "My Ugly Childhood" & Moving on for the first time in my life.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Realizing that those who "claim" to be Christians are anything but.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>And when I listened to my inner pilot light and had the guts to follow through on my prescription~ </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>seemingly incurable thoughts/images suddenly disappeared!</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I am happy, for the first time in my life, I am TRULY happy!</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I have a lot of healing to do</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I'm nowhere close to being "cured"</i></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>But I have gotten thus far in 16 months, I can only imagine the happiness my future holds. </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>A future with the most amazing husband and daughter one could ask for!</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>~But medicine on MY terms has so far proven to be the best treatment~</i></span><br />
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<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Seeing a Psychologist weekly, proper nutrition and exercise has provided me concrete evidence that the body is equipped with innate self-repair mechanisms. That Moving on IS possible. I'm not saying that I'm not on any medications, because I definitely am... But removing myself from my past has also helped more than I can say. But the power of nutrition & exercise has surpassed any medications I've been on thus far. </i></span></div>
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<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>~I am not my past~</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>In December 2012, I was referred to a NeuroPsychologist.</i></span><br />
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<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i> Again.</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I saw one {Ironically} in 2005 BEFORE my 8 brain surgeries.</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i> In 2005 my Neurologist sent me to a NeuroPsych after learning of my childhood sexual abuse. He wanted to make sure I wasn't, "Making these headaches up." My results were normal. This year I repeated those same tests, and had dramatically different results. So much of the chemical makeup of my brain has changed from several surgeries. The Frontal Lobe of the brain is in control of many functions. Many functions that were not working for me after 8 frontal lobe surgeries. 16 Surgeries in all that affected my brain, and suddenly I started slipping away into another person in 2011. I have what is called Dissociative Fugue. I never heard of it before, but when my Psychologist gave Jeff & I the information. It was like an "ah-ha" moment... Things were happening that I could not control.</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Memories that I do not hold, even still to this day.</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>And after my last brain surgery in Oct '11, our lives absolutely fell apart.</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>But after getting confirmation from my NeuroPsychologist that I was not in control of what I was doing,</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>due to all the frontal lobe damage,</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i> Jeff put that terrible part of our life at rest and dismissed our "pending" divorce.</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I learned through therapy</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i> that this can happen to an adult who suffers from childhood sexual abuse and never receives the help they need. I buried my life in my work, I worked full time until I was unable to work any longer due to the surgeries.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>It will take something very wrong for me to have brain surgery again... All the brain damage, losing my job, 2 best friends and almost losing Jeff & Tiffany was not worth it. I still struggle with the headaches. I deal with it now as best as I can.</i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i> The past cannot be changed, but the future holds PROMISE!!! </i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I was starting to get the hint that maybe my body was pissed off at me for how I had been living my life; that perhaps my body was done whispering when I wasn't listening. And it began to SCREAM...</i></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>The Storm, at long last, has finally lifted.</i></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Finally ~</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>There's an end to every storm</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Once all the tree's have been uprooted</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Once all the houses have been ripped apart</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>The wind will hush~</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>The clouds will part~</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>The rain will stop~</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>The sky will clear in an instant</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>and only then~ in those quiet moments</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>after the storm do we learn~</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>WHO was strong enough to</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>SURVIVE...</i></span></div>
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-76160095797948207692013-01-25T14:32:00.000-06:002013-01-25T14:41:25.458-06:00~Living Again January 2013<span class="Apple-style-span" style="font-size: large;">Thankfully~ </span><br />
<div style="text-align: left;">
<span class="Apple-style-span" style="font-size: large;">Our Lives have been amazingly better over the last year. (My health is a whole different story.) A lot has happened since m</span><span class="Apple-style-span" style="font-size: large;">y last post in February 2012.</span><span class="Apple-style-span" style="font-size: large;"> From January 2012 to August 2012 I was seeing a Therapist/Counselor, that was helping Jeff & I mend our marriage. </span></div>
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<span class="Apple-style-span" style="font-size: large;">{{<i>Which is going great these days </i>}} </span></div>
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<span class="Apple-style-span" style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-size: large;">In August 2012 I had my hearing in front of a judge for SSDI. Again I was denied. Our lawyer withdrew from the case, which was a good thing, we were gonna fire her anyway. She did not do a good job presenting my case, nor my daily struggles/disabilities. Nor did she present my cognitive decline that I now struggle with after 8 brain surgeries. It took us until late September to find a lawyer who will take the case over at this point. But we found a lawyer out of Chicago, Il who has a satellite office in Munster, In. We presented the case to him, and he took my case without hesitation! </span><span class="Apple-style-span" style="font-size: large;">He has filed the appeal, and w</span><span class="Apple-style-span" style="font-size: large;">e had 30 days to submit any new information. </span><span class="Apple-style-span" style="font-size: large;">I had a bunch more tests done, some duplicates of past tests to prove NO improvement of the difficulties I have with my two brain diseases, and other aliments. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-size: large;">Unfortunately, as we all know, it is very difficult to get into a new Dr in 30 days, then to have tests scheduled, performed, results read and interpreted within 30 days. So now I sit waiting for results of tests I had done in December, and in early January. </span></div>
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<span class="Apple-style-span" style="font-size: large;">Needless to say the 30 days has now past. </span></div>
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<span class="Apple-style-span" style="font-size: large;">The process now is for another judge to review the case as it was presented at the August 2012 hearing, to see if the judge did in fact make the right decision. That will take another year I'm sure. We will give the lawyer the new test results when I get them to see if he can still submit them. The good thing is that this new lawyer is excellent at these types of situations. And while calling around to find a lawyer to take my case, I was referred to him by several offices!</span></div>
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<span class="Apple-style-span" style="font-size: large;"><br /></span></div>
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<span class="Apple-style-span" style="font-size: large;">{{ Nail Biting Situation }}</span></div>
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<span class="Apple-style-span" style="font-size: large;">My long term disability I currently have from my last job, is now up for a 2 year review. Being denied SSDI, they are trying to determine whether or not I will continue to get LTD with my current status. I have not heard from them yet... </span></div>
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<span class="Apple-style-span" style="font-size: large;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-size: large;">Still seeing the Psychiatrist I have been seeing since last year, I am also seeing a Neuro Psychologist for Neuropsychological testing, and a Psychologist for therapy. The neuropsych testing will be compared to the neuropsych testing I had done before any brain surgeries. </span></div>
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<span class="Apple-style-span" style="font-size: large;">{{ That ought to be interesting! }} </span></div>
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<span class="Apple-style-span" style="font-size: large;">Already he is very concerned with my memory issues. </span><span class="Apple-style-span" style="font-size: large;">(that have not improved yet from October 2011 brain surgery) </span><span class="Apple-style-span" style="font-size: large;">All tests are done, now we wait on our appointments in February & March for the results. He even did an additional memory test that insurance does not pay for, at no charge to me, he wanted to confirm that I have severe deficits with my memory. My previous Dr did all the tests in one 8 hour day. This new Dr spread it out in 3 visits! The tests are just too grueling for someone who has had 16 surgeries, to do it all in one day.</span></div>
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<span class="Apple-style-span" style="font-size: large;"><br /></span></div>
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<span class="Apple-style-span" style="font-size: large;">{{ ON A COMPLETELY DIFFERENT SUBJECT }} </span></div>
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<span class="Apple-style-span" style="font-size: large;">Tiffany, my almost 18 year old </span><span class="Apple-style-span" style="font-size: large;">beautiful </span><span class="Apple-style-span" style="font-size: large;">daughter, graduates high school this year! AND has been accepted into the nursing program at Valparaiso University. A not so easy school to get into, not to mention an almost impossible nursing program to get accepted into! She has nearly been a straight A student for all of high school. Jeff & I, are incredibly proud of her! She is thinking about a Nurse Anesthetists career, but still has her sights on Pre-Med. </span></div>
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<span class="Apple-style-span" style="font-size: large;">My relationship with Tiffany was very strained in 2011. I am happy to report that we are about 98% of our old {{mean girls}} selves! She is a very distinguished young lady who has made her dad and I so proud... Today we made a purchase for her graduation gift. I cannot say what it is, as she will see this post. But she will be more than elated! And it will be very hard to NOT give it to her early! Something I have a bad habit of doing!</span></div>
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<span class="Apple-style-span" style="font-size: large;"><br /></span></div>
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<span class="Apple-style-span" style="font-size: large;">Jeff is doing well in his apprenticeship program with the Boilermaker's. He is more than half way through, and well on his way to making the scale wage he truly deserves! He has been a very talented welder for about 18 years, and I couldn't be prouder of him for making this difficult career change when he did.</span></div>
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<span class="Apple-style-span" style="font-size: large;">{{ Jeff & Tiffany are my whole world, and I don't know where I'd be without them! I Love you guys! }}</span></div>
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-9463067354922686582012-02-20T21:04:00.000-06:002014-01-18T12:23:06.131-06:00~BELIEVINGIf you've read my journey to date, you are aware that I had a very rough end to 2010. And a not so great 2011. 9 surgeries between the two years and a lot of antidepressant drugs to keep from falling too far into depression. My disease finally took my job away from me, and that was a ROUGH pill to swallow. I had enjoyed working ever since I was 16. To not work is a whole new ballgame to me...<br />
<br />
2011 started out rough with 2 failed surgeries in Nov. & Dec. 2010. The ventricles in my brain failing to support my brain shunt any further. Reverting back to [another] Lumbar Shunt. Surgery after surgery in 2011. I sometimes joked about being an Anesthesia "junkie" it seemed I was having more surgeries than not... I had actually became a familiar face to the preoperative holding area. People new my name. It was a joke after a while.<br />
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I fell to some hard times with some family members. I slipped further into depression. My family doctor had prescribed more & more antidepressants, one on top of the other. From January to April he (my Dr) had added one a month, to end it in April with Ambien thrown into the mix. <br />
<br />
Jeff had quit his job of 11 years, to work for the Boilermakers. That was stressful on all of us. I was in the middle of 9 surgeries and we switched insurances. But Jeff didn't get insurance right away, like all new jobs, there was a 90 day waiting period... We had to pay for COBRA, and with my 2 brain diseases, it was not cheap. ~STRESSFUL~<br />
<br />
In October 2011, I had what IHope was my FINAL Brain Surgery. Dr Turner in Indianapolis, Indiana was my new Neuro Surgeon. He was very optimistic to restoring my brain shunt function... He even gave me a programmable CODMAN Brain Shunt so I wouldn't have to endure any more surgeries or spinal taps! I remember bits and pieces of the long drive to Indianapolis the day of surgery. I remember bits and pieces of checking into the hospital, and being taken to the pre-op area. That was it for it for exactly 5 weeks. <br />
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Memory loss was expected for about 7 to 10 days after surgery. NO~ I had exactly 5 weeks of complete memory loss after surgery. During that time I had been admitted into Porter Stark for 5 days, and wanted a divorce from Jeff. When I got out of Porter Stark I lived with my parents for quite a few days before leaving for Texas. I was in Texas for nearly 2 weeks before "waking up" on Friday November 18, 2011.<br />
<br />
My dad had surgery earlier that week, and was not doing well. Jeff finally got ahold of me and arranged for me to fly home. I had no drivers license, no ID, no money. I was completely out of my mind to leave Indiana without any ID... I talked to Jeff on the phone for several hours that Friday, about where I was, and what I was doing there. He told me that my dad was not well, and if I wanted to see him alive, I needed to come home now. He arranged for me to pick up my ticket at the airport, and to speak to TSA so I could get on the flight with no identification. That Saturday I flew home. Jeff took me straight to the hospital to see my dad. During the drive I had mentioned that I couldn't wait to see my dog Shadow. I had missed him so much. That he would still love me regardless of my mistakes... We had our dog of 12 years, put to sleep in August 2011. I didn't remember that, and had to relive that all over again. (And that was WEEKS before my brain surgery in October.)<br />
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When I first came home~ I again, was living with my mom. A week had gone by, and Jeff & I finally agreed upon me coming to live at home again. I have been home ever since. It has not been easy. I Love Jeff & Tiffany with all my heart! I cannot believe all that has happened. I nearly lost my life... I did lose a best friend, sad to say... that is one relationship that will never be mended. <br />
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I started seeing a therapist in January. And I am seeing a Psychiatrist in a few weeks. I'm waiting on an appointment with his office. Hope to get some answers from him, about my crazy behavior and the memory loss BEFORE the October 2011 surgery. Was it the combination of medications I was taking that had me all screwed up. Or was it something completely different. We are all very interested to know what the heck happened to me. Hell~ It happened to me, and I couldn't even begin to tell you what I think happened...<br />
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I am very grateful to Jeff & Tiffany for not giving up on me, and for BELIEVING in me... Believing that there was something more wrong with me, and there surely was. I'm grateful for the friends who were here for me to lean on despite all that had happened and the lies that were told... The one's who hugged me and said they were glad I was home safely. Those are TRUE FRIENDS!<br />
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To this day I still struggle with my memory, granted it's not as bad as it was in November & December. But I still have to write things down more frequently and have to refer back to notes, and conversations. I am on a LONG road to recovery, it has not been easy! I feel like I lost a whole year of my life. I've waited so long to turn 40... LOL, I know~ most people dread that very day... BUT my 30's were just one surgery after another. Almost 20 surgeries in one decade is more than anyone should have to endure... There is more to this story (obviously) but it's not for public knowledge. I made some really bad mistakes, but with a little help from the prescription drugs I was prescribed...<br />
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I'm not perfect, never claimed to be... But I do admit to my mistakes! And I am getting the help I need!Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-43628165327641628182011-10-06T18:30:00.000-05:002011-10-06T18:32:25.407-05:00Hello Brain<div style="text-align: justify;">
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Hello,</div>
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I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.</div>
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As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.</div>
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I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.</div>
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How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?</div>
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Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.</div>
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What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.</div>
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I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.</div>
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I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.</div>
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I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.</div>
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Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.</div>
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Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.</div>
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Love,</div>
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your wounded brain</div>
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©1996 Stephanie St. Claire</div>
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May be reprinted for personal, not for profit use.</div>
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-52610979285517749752011-10-03T14:44:00.002-05:002011-10-03T14:46:08.371-05:00~ August 31st New Neurosurgeon AppointmentAug 31, 2011<br />
I have an appointment with a new neuro surgeon, Dr. Michael Turner MD at Methodist, an Indiana University Hospital in Indianapolis Indiana. He's a Dr that another very close, local IH friend see's. She has had great results with him, he's a SHUNT GURU! I'm excited and nervous at the same time.<br />
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My records were all sent down before my appointment and he had reviewed them beforehand. When I got there and checked in for the appointment, right away the receptionist took the CD of my latest MRI and uploaded it to the computer. Having never been there before, we were 45 minutes early. We waited a bit, but they took me right back to a room. I had already been told what to expect with this Dr. He's very fast and to the point. Had I not known things about this Dr beforehand I might of thought he was VERY cocky... He introduces himself, and asks why I'm here. I told him a tidbit of my story, most recent surgeries with brain shunt and new lumbar shunt. He had already looked over records and MRI, and says to me, " I can restore for you a working programmable brain shunt! And you have Chiari... WHY do you have a lumbar shunt?" <br />
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He said that there is a newer procedure that a handful of neuro surgeons are doing for people with Slit Ventricle Syndrome, and he is one of those surgeons. They place the tubing in the back of the brain near the brain stem instead of in the already collapsed ventricle where it's at right now. Scary thought~ near my brain stem... But I'm desperate to get this lumbar shunt out of me. It has caused me more problems than I can even tell you... (That's a whole different post!) I love the idea of a "Programmable" brain shunt. That way I wont have to have surgery just to have it adjusted!<br />
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Dr Turner wants me to get x-rays, they do them right in his office. He wants to see the shunts and the tubing that goes along with them. He comes back into the room after I had them done. He wants to examine my abdomen. I get up on the table and I had him feel my lumbar shunt that sits right above my left hip. It's VERY superficial, and VERY uncomfortable. You can feel it through the skin. He agrees to take that shunt out, and it's tubing. He says I need to see what's going on over here, and is pointing to my drain that co-insides with my brain shunt. He feels around it & says I think you have a mass around the draining tube... It appears I have developed a pseudomeningocele at the draining port of my brain shunt. I told him that I had just talked to my neurologist about it and she wanted me to get a CT scan to see whats going on there. He said that's great! Get the CT scan and I want the CD on the day of surgery so he knows what he's looking at. I also have a ton of scar tissue in my abdomen from all the previous surgeries.<br />
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So we then talk about the actual surgery. He's going to put in a Codman Programmable brain shunt. The last programmable shunt I had was a lumbar shunt. A programmable brain shunt can sit/rest on the skull, and not move... A programmable lumbar shunt has nothing to sit/rest on, therefore moving, twisting, or flipping over in my case, causing all kinds of problems. He will use the same incision, same access whole, same site as my current brain shunt. Which is just great news! The tubing will just travel to the brain stem instead of through the collapsed ventricle where is currently resides. While he's got my third ventricle opened up, to remove current shunt tubing, he will take a closer at the Colloid Cyst that's blocking the ventricle. And decide if it is what's causing my ventricles to collapse... He's going to remove my NEW lumbar shunt and tie off the tubing that goes to my spine. He will be leaving the actual tubes in my spine, he said it's too risky to remove either one of them, unless one of them causes a problem. But he will be removing the tubing from BOTH lumbar shunts from my abdominal cavity. And he will be opening up the tube from my brain shunt that drains in my abdomen to fix whatever is going there.<br />
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As of right now this is scheduled October 13th for an inpatient one night stay. But depending on the severity of the abdominal scar tissue and tubing issues, it might turn into a two night stay.<br />
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<br />Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com1tag:blogger.com,1999:blog-174378113488862250.post-3130082674070789192011-10-03T12:10:00.002-05:002011-10-03T15:01:50.655-05:00~ July 2011 MRI & NS Appointment ~ Blessing in Disguise<br /> <br /><div>
On June 28th<br />I had another MRI of my brain to try and figure out just what in the world is going on in this head of mine... I had been having horrible "pulling" in the back of my head, my dizziness is debilitating and not to mention the pain! Horrible head pain, mostly around the brain shunt and in the area I was decompressed. As you know, I had surgery on June 6th to change the Lumbar Shunt valve from a fixed 1.5 to 1.0. With me having Chiari~ I wont go any lower than a 1.0 since my lumbar drain is the reason I acquired a Chiari Malformation in the first place. I technically shouldn't even have a lumbar drain, but my neuro surgeon is done trying to work on my collapsed ventricles in my brain...<br /><br /><br /><div>
MRI RESULTS:<br />I have unilateral SLIT VENTRICLE SYNDROME, My Pituitary Gland is completely compressed "FLAT" (as stated on MRI) a " a perplexing amount of CSF in the suprasellar cistern represents a Cyst with possibility of arachnoid adhesion's" A Colloid Cyst along the anterior recess of the third ventricle, it is more prominent than the 2009 MRI and is now LARGER and in a different location than on the prior study. NO CHANGES in the brain stem & Cerebellum.<br /><div>
<br /><br />But read below regarding the adhesion's.. It's VERY interesting. I had gone to Neuro Rehab during the month of June, and it barely helped with my dizziness. Then I read about Arachnoid Adhesions... It all made sense after that! <br /><br /><br />Needless to say I am my own advocate, HAVE TO BE! And I had the results of the MRI and the CD in my hands before my neurologist. I waited until after the 4th of July to call her about the results. I had left Dr DeLeo a couple of messages regarding the MRI results and that I had questions about it. It took quite some time to hear back from her, I thought it was because my neuro surgeon took a 2 week vacation, and she was wanting to talk to him about it before talking to me... She finally calls on July 15th and we spent a half hour on the phone. The Colloid Cyst was her biggest concern, it's blocking CSF flow to the third ventricle. And the fact that it has moved, and is now bigger. In 2009 the radiologist called it an Arachnoid Cyst, My neuro surgeon was not overly concerned about it said people get them all the time after brain surgery. Now it's bigger, and has moved... My theory is that it's responsible for my current brain shunt failing. The Colloid Cyst is blocking the third ventricle, and that's the ventricle where my brain shunt pulls fluid from... I don't know, I'm not a Dr but it seems like the logical reason, for after three years of a wonderfully functioning brain shunt to stop working...<br /><br /><br />July 19, 2011<br />Chicago Bound... <br /><br />Post-op appointment with neuro surgeon. I know~ my surgery was June 6th but I had to cancel one appointment, then came the 4th of July week and after he went on vacation for two weeks. Typical post op appointment at first, we talked about how I was doing since the last shunt valve change. I proceeded to tell him that my SWOOSHING came back on July 28th... He just kinda threw his hands in the air, looked me in the eye, and said that there is NOTHING ELSE he can do for me. I tried talking to him about the MRI, handed him the report, he barely looked at it, and said, "I cannot help you any further! You need to go to Mayo or somewhere like that!" I was devastated, cried... BUT I knew that he was probably going to do this. He wouldn't even entertain the possibility that the Colloid Cyst was blocking CSF flow to my brain shunt. He had his mind made up, I think before he even came into the room... He has tried to dismiss me as a patient once before but he had to keep me a little longer to fix his screw up on my lumbar shunt tubing... I had already talked to my neurologist about a referral to Indy Dr, she said I just needed to talk to my Neuro surgeon about the cyst and we'll go from there, I tried to tell her this was coming, she didn't think he'd turn me away... BUT HE DID! When I got home from the NS appointment I called Dr DeLeo's office and left her a message that I needed the referral to Indianapolis and all my records sent to Dr Michael Turner, MD.<br /><br /><br />Blessing in disguise!<ul class="uiList body contentListWidth" style="list-style-type: none; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 2px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-88024855186019934782011-10-03T10:24:00.002-05:002011-10-03T14:57:31.068-05:00~ June 2011 Dr appt., MRI & Lawyer<div style="text-align: justify;">
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I went to see a Lawyer RE: filing an appeal for Social Security Disability Income. I have NEVER met with a lawyer ever... So needless to say I was scared to death! She asked a lot of question's and I told her what's been going on since 2003, and who my Dr's were... She agreed to do the case, we agreed to hire her! We were there for a few hours, due to the Appeal paperwork that needed to be filled out. She wanted answers to all the test I had done for the "new neuro dr" but I didn't have a followup appt with her until the next day to get those results. She said if I have "dizziness" that I would be golden for SSD, because neither one of my conditions are SSD approved... I told her I had a ton of tests done, but don't know the results... Jeff & I had mixed emotions when we left the office. Bitter Sweet. When I had the tests done, I prayed nothing else was wrong with me, now i'm praying there is something else wrong, to help this process go smoothly since IH & Chiari are not approved disabilities... The next day, we meet with my new neuro to get all the test results.</div>
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New Neurologist appointment, Dr DeLeo, she meets with me at 8am, before reg patients! I felt 100% of her attention, she made "special" time to meet with me!!! Well, as it turns out, I do have some serious Vestibular Disorders! I suffer from Dizziness!!! BONUS! I'm only happy about that because I started to feel like people didn't believe me, that all the times I have to pass on "get togethers" parties, special occasions, etc... I now have proof! I have something serious going on in my right ear, inner ear, she wants to prescribe me a med, but wants me to think about it/research it right now! (I liked that! She didn't shove pills down my throat) My MRI, is just a constellation of problems, ventricles, Chiari, decompression surgery, I need to have another shunt revision, she really wants me to get a "programmable" shunt, but we already know how that turned out once already, but she see's to think that with "enough" weight loss, that a programmable lumbar shunt will work for me in the future. Dr DeLeo is going out to dinner w/ my NS Dr Munoz later this month, and they are to discuss this! (I like that too!) I also have another issue that I've been fighting w/ Dr's about for years. I have a Positive ANA... AGAIN!!! It comes & goes, I've been trying to get a Dr to look into it, but they always say it's no big deal, well this time, my # was sky high... It needs looking into now! AnA is AntiNuclear Antiboby = autoimmune disorder... To go along w/ it, my ESR & C-Reactive proteins are very high, which is also an indicator of autoimmune disease... And to top it all off... I am here today at my regular Dr because I need to get a follow up chest CT, because the one I had done in Feb showed a spot on my lung... Radiologist recommended a follow up CT in 3 months...</div>
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Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-40756204060543903772011-07-02T09:41:00.002-05:002011-07-02T09:42:24.912-05:00~ Surgery June 6, 2011On June 3rd, I go back up to Rush, I have 3 Dr appointments. Dr Mizen, a Neuro Opthalmologist, Dr Khandelwahl, a Rheumotologist, and Dr Munoz, my Neuro Surgeon.<br />
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Dr Mizen and his staff were really amazingly nice people, problem is... my Opthalmologist here in my hometown, Dr Scott Cory runs all the same tests a Neuro Opth does, and has State of the Art Equipment. Dr Mizen, has OLD equipment, wasted trip in my opinion, but my neurologist wanted me to see him for a second/third opinion. The great thing about this visit, is that he said he did not see any need for me to back on Diamox!!!<br />
I DID NOT WANT TO GO BACK ON THAT MEDICATION!!!<br />
And if you read my previous post regarding my surgery on May 27th, you'd know that my Neuro Surgeon did NOT change my shunt valve, so buy the time I saw the Neuro Opth, I was losing my visual field. (peripheral vision)<br />
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Dr Khandelwahl is a Rheumotologist. I am being tested for Auto Immune Diseases. My blood work has been a little concerning giving my history, my neurologist thought I should see a specialist to look into it.<br />
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~ Finally I meet with Dr Munoz to plead my case to him that I need this shunt valve changed from a 1.5 to a 1.0. He met with me on a Friday, he sees patients on Tuesdays, so it was VERY nice of him to meet with me in between surgeries. He was very much against changing my valve number to a lower setting, due to the fact that I might then have a low pressure headache. We talked for about 45 minutes, he only agreed to do the surgery with a backup plan, and that back up plan was to stay in the hospital for 3 days to monitor me for any signs of a low pressure headache. He got his MA, and we scheduled the surgery for Monday!<br />
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Monday June 6, 2011 We have to be at Rush @ 5am, surgery is scheduled for 7:15am. Being that it was the last week of school and Tiffany had ETA's, she did not go to Rush with us, and went to school. Jeff & I got there on time, and everything was going as planned, until we both fell asleep upstairs in the holding area, and was awoke by Dr Munoz's physician assistant... She was freaking out because I hadn't gotten my IV yet. Well we both fell back asleep... Then all of a sudden EVERYONE comes rushing to get me, I barely was able to give Jeff a kiss goodbye, and they wheel me off. NOW ~ usually I've got versed running through my IV, and I'm out by now, but I don't even have an IV, and now I'm awake in the operating room, which is like 12 degrees! LOL... I get onto the surgery table, they are working on both my hands to get an IV in, my right hand was poked twice, complete fail, but they get one in my left hand! SOMEBODY dropped the ball on my surgery I guess Dr Munoz was PISSED!!! it was Anesthesia ~ they NEVER came to check me in while I was in the holding area, granted I'm a "frequent flyer" there at Rush, the staff there is VERY familiar with me.<br />
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Anyway surgery goes just fine, and as planned with no complications.<br />
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Surgery was on Monday morning, and I have to stay in the hospital until Wednesday due to my agreement with Dr Munoz. If I was showing signs of a low pressure headache, I was to have surgery on Wednesday to change the valve back to a 1.5...<br />
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Monday was rough, Jeff & I were very tired, and slept most of the morning/afternoon. I was very sore, this is the 4th time this same incision has been opened up including it's initial placement in January 2011. Jeff left sometime around 2, to beat the traffic, and I slept till around 5 or so.<br />
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I had awesome nurses this time! Everyone was wonderful, my neuro surgeon came to check on me before he went home for the day, he NEVER sees me the same day of surgery! He really was worried about changing that valve, I WASN'T... Not when I functioned with my first lumbar shunt as a wide open pediatric valve... 1.0 was a bit off from wide open! So I knew it would be OK!<br />
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Tuesday June 7, 2011 I was up waking the halls, I was eating OK, and have Physical & Occupational Therapy that day.<br />
~ ALL WAS GOING WELL!!<br />
Dr Munoz came in once again before his clinic hours started at 1pm, and he was happy and surprised that I was not having low pressure headaches. It's a joke between him & I now, because when I met with him on Friday he said it's gonna be a I TOLD YOU SO situation! Either he is gonna tell me I told you so that you'd have low pressure, OR I told him so... That I was NOT having low pressure. So we joked about it, and he reminded me that I wasn't out of the woods just yet, and if all looks good he'd let me go home on Wednesday. I have known Dr Munoz since 2005. We have a pretty good relationship ~ we can joke around like that!!!<br />
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~ Finally in the car, on my way home! YEAH!! We get about half way home, and I tell Michelle... I DON'T HAVE ANY KEYS!!! LMAO! This is the first surgery Jeff didn't pick me up when I was discharged because of his new job!!! So since I didn't look tooooo horrible, we went to a local cafe, UPTOWN Cafe in Valparaiso, In and had a couple of coffee's until my daughter was home from school! That was so funny!!!<br />
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Today is July 2nd and I have been very busy, I go to Neuro Rehab two times a week, and been having some other issues. And have been seeing a handful of Dr's and having all kinds of testing done to see what the hell is going on with me! Sorry for the delay of this post. I know some of you have been waiting for me to post it!!!Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-8683512740095607352011-06-10T11:52:00.003-05:002011-07-13T18:45:52.520-05:00Chiari and other related conditions - Angels<iframe allowfullscreen="" frameborder="0" height="344" src="http://www.youtube.com/embed/Aw8W6hYGZ0E?fs=1" width="425"></iframe><br />
<h3 class="post-title entry-title" style="color: #333333; font-family: Cuprum; font-size: 17px; font: normal normal normal 30px/normal Georgia, Utopia, 'Palatino Linotype', Palatino, serif; line-height: 23px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; position: relative;">.</h3><div class="post-header" style="color: #997755; font-family: Cuprum; font-size: 17px; line-height: 1.6; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><div class="post-header-line-1"></div></div><div class="post-body entry-content" id="post-body-3914703773531133705" style="color: #333333; font-family: Cuprum; font-size: 17px; line-height: 1.5; position: relative; width: 508px;"><h2 style="color: #660033; font: normal normal normal 20px/normal Georgia, Utopia, 'Palatino Linotype', Palatino, serif; margin-bottom: 0.5em; margin-left: 0px; margin-right: 0px; margin-top: 0px; position: relative; text-align: center;"><br />
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</span></div><h2 style="color: #660033; font: normal normal normal 20px/normal Georgia, Utopia, 'Palatino Linotype', Palatino, serif; margin-bottom: 0.5em; margin-left: 0px; margin-right: 0px; margin-top: 0px; position: relative; text-align: center;"><span style="color: #403152;"><span style="color: black;">"<u>THIS IS HOW SERIOUS IH/PTC & CHIARI REALLY IS</u>"</span></span></h2></div><br />
<div style="text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, Utopia, 'Palatino Linotype', Palatino, serif; font-size: 20px;">This is a list of people that we know of who have past on from Chiari, IH/PTC and other conditions: R.I.P</span></div><div class="post-body entry-content" id="post-body-3914703773531133705" style="line-height: 1.5; position: relative; width: 508px;"><h2 style="font: normal normal normal 20px/normal Georgia, Utopia, 'Palatino Linotype', Palatino, serif; margin-bottom: 0.5em; margin-left: 0px; margin-right: 0px; margin-top: 0px; position: relative; text-align: center;"><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong><br />
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<span style="color: #403152;"><strong>Garion Michael Barber</strong></span><br />
<span style="color: #403152;"><strong>Orange County, Florida</strong></span><br />
<span style="color: #403152;"><strong>March 29, 2008</strong></span><br />
Featured on Dr. G Medical Examiner Episode, Garion was an 8 year old boy who died in his sleep; reason for his death was ruled 4 months later as Chiari, a diagnosis a doctor had labeled on Garion earlier but never bothered to tell the parents.</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Len Lannon </strong></span><br />
<span style="color: #403152;"><strong>Philadelphia, Pennsylvania</strong></span><br />
<span style="color: #403152;"><strong>June 12, 2008 </strong></span><br />
Len had brain and spinal surgery on May 1, 2008. He suffered from Chiari Malformation. In addition to the brain surgery, two cervical vertebrae were also repaired. Len suffered some major complications on the third day of recovery. He developed bacterial meningitis, and suffered a stroke.</div><span class="Apple-style-span" style="color: #660033; font-family: Cuprum; font-size: 17px;"><strong></strong></span><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry"><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Charles Ross Oscar “Chip” Vierow</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Lakeland, Minnesota</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>November 6, 2008</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Founder of WACMA </strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;">Had been fighting a courageous battle with a liver disease called nonalcoholic steatohepatitis (which is not associated with Chiari). He spent the last few weeks in the intensive care unit awaiting a liver transplant, but became too sick before a liver became available for him. <a href="http://www.legacy.com/obituaries/twincities/obituary.aspx?n=charles-ross-oscar-vierow-chip&pid=119893649" style="color: #333333; text-decoration: none;"><br />
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</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Clinton Botha </strong></span><br />
<span style="color: #403152;"><strong>East Timor, New Zealand</strong></span><br />
<span style="color: #403152;"><strong>March 7, 2009</strong></span><br />
A young New Zealand soldier who served in East-Timor. Botha’s promising career was being hampered by debilitating headaches, and he was told surgery would relieve pressure on his brain. However, twelve hours after that minor operation, Clinton died of respiratory failure at Christchurch hospital.</div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><strong></strong></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Brianna Lynn McCarthy</strong><br />
<span style="color: #403152;"><strong>June 4, 2009 </strong><br />
Peacefully away at the Health Sciences Centre St. John’s, NL on Thursday June 4, 2009. She was 34.</span></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><strong></strong></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong><br />
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<span style="color: #403152;"><strong>Rebecca Pence </strong><br />
<span style="color: #403152;"><strong>June 2009</strong></span></span><br />
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</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Jessica Depassano {Chiari}</strong><br />
<span style="color: #403152;"><strong>Wayne, New Jersey</strong><br />
<span style="color: #403152;"><strong>August 27, 2009</strong><br />
25, went into a coma for 3 weeks. <a href="http://tinyurl.com/4xuftpf" style="color: #333333; text-decoration: none;"><br />
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<span style="color: #403152;"><strong>Kelly Jean Davis Morrill {Chiari} {EDS} {Tethered Cord} {Hydrocephalus} {Subcraneal Instability} </strong><br />
<span style="color: #403152;"><strong>Layton, Utah</strong><br />
<span style="color: #403152;"><strong>October 10 2009</strong><br />
Two decompression surgeries, second was a full sinus, csf leakage on both, viral meningitis, shunt placement surgery, cranial placement surgery, 11 shunt revisions, staff meningitis, TC surgery. Kelly, 44, passed away peacefully on Saturday, October 10, 2009 after a long and valiant battle with Arnold Chiari Malformation. Kelly was a loving wife, mother, daughter, sister, aunt and friend. She was born February 4, 1965 in Ogden, Utah. Attended Utah State University, served the deaf as a sign language missionary in the Virginia Roanoke LDS mission. Kelly started a website to provide help, support and information for others who are affected by the Chiari Malformation. </span>She is survived by her husband, Rob; her four children Tyler, Chace, Sam, and Sarah.</span></span></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><span style="color: #403152;"></span></span><span style="color: #403152;"><strong>Sarah Thomas {Chiari}</strong><br />
<span style="color: #403152;"><strong>Joliet, Illinois</strong><br />
<span style="color: #403152;"><strong>October 14, 2009 </strong><br />
22, Thomas eventually learned about a renowned neurosurgeon based in Milwaukee, Dr. Dan Heffez, who had performed operations on hundreds of patients with similar symptoms since the late 1990s. The published results were encouraging, said the teen, whose familiarity with medical vernacular was light years ahead of her chronological age. With the wholehearted support of her parents, Thomas scheduled a consultation in the fall with the physician in Milwaukee. He detected blankets of scar tissue draped around the teen’s brain stem from Arnold-Chiari syndrome and suggested surgery as soon as possible. “It was such a relief that someone found something,” she said. The dedicated high school honor student was able to schedule the surgery during her Thanksgiving vacation, so she would miss the least amount of school as possible. On Nov. 21, 2005 Thomas underwent surgery. While recovering from the operation, she was delighted to wiggle her toes again and move quite easily from the hospital bed. “It was nothing short of a miracle,” said the teen-ager’s mother. Speaking about the teen’s remarkable improvement, Karen said, “I can’t describe it)</span></span></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><strong></strong></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Melinda Kay Fancher {IH}</strong></span><br />
<span style="color: #403152;"><strong>Weatherford, Oklahoma </strong></span><br />
<span style="color: #403152;"><strong>January 5, 2010</strong></span><br />
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<span style="color: #403152;"><strong>Charla Cochran {Chiari}</strong></span><br />
<span style="color: #403152;"><strong>Dallas, Texas</strong></span><br />
<span style="color: #403152;"><strong>March 18, 2010</strong></span><br />
Mom of 3 great kids; Collin, 14, Maddie, 12, and Macie, 6. Was married to the love of her life, Jeremy. Had an endoscopy on 3/13, died in her sleep 5 days later.</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Brayden Asher {Chiari Type III}</strong></span><br />
<span style="color: #403152;"><strong>Tomball, Texas</strong></span><br />
<span style="color: #403152;"><strong>April 12, 2010 </strong></span><br />
1 month old with Chiari Type 3</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong><br />
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<span style="color: #403152;"><strong>John Smith {Chiari}</strong></span><br />
<span style="color: #403152;"><strong>Grapevine, Texas</strong></span><br />
<span style="color: #403152;"><strong>April 23, 2010</strong></span><br />
John was decompressed in 2004, he was an amazing father, son, brother and friend. John was 36 when he died leaving be hind two amazing children Colton and Garrett. He was found in his front yard, he could no longer take the pain and the Doctors said deal with it. A graduate of Grapevine high school, he got his degree at TSTC in Waco worked at Gulfstream Aerospace. He could make anyone having a bad day have a good day. There was nothing he couldn’t do or fix except Chiari. Loved the Cowboys more then anyone I have ever seen, crazy. <a href="http://www.facebook.com/profile.php?id=100000620034473" style="color: #333333; text-decoration: none;"><strong><br />
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<span style="color: #403152;"><strong>Tyler Moore {Chiari}</strong></span><br />
<span style="color: #403152;"><strong>Lorain, Ohio </strong></span><br />
<span style="color: #403152;"><strong>May 29, 2010 </strong></span><br />
20 years old with Chiari <a href="http://www.legacy.com/obituaries/courierpress/obituary.aspx?n=tyler-moore&pid=143284023" style="color: #333333; text-decoration: none;"><span style="color: #403152;"><strong><br />
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</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Sally Meehan {Chiari}</strong><br />
<span style="color: #403152;"><strong>Filton, Bristol, South Gloucestershire, UK</strong><br />
<span style="color: #403152;"><strong>June 29, 2010 </strong><br />
39 years old six months after giving birth to her second child Mrs. Meehan died in hospital after an operation to treat a rare brain condition. The former Filton High School pupil had gone under the knife after being diagnosed with a previously undetected condition called Chiari malformation. On June 26 she died after failing to recover from the emergency operation. She had an operation at Southampton General Hospital in a bid to treat the illness and although it was initially deemed a success, her health deteriorated, causing heart failure, and although she underwent an emergency operation, she never recovered.<a href="http://www.thisisbristol.co.uk/news/Rare-brain-condition-took-Sally-soon/article-2387655-detail/article.html" style="color: #333333; text-decoration: none;"><br />
</a></span></span></span> </div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Nicholas Joseph Thornton {EDS} </strong></span><br />
<span style="color: #403152;"><strong>August 18, 2010</strong></span><br />
<span style="color: #403152;"><strong>Milford, Michigan</strong></span><br />
14 years old.<br />
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<span style="color: #403152;"><strong>Wendi Snell {Chiari}</strong></span><br />
<span style="color: #403152;"><strong>Jacksonville, Arkansas</strong></span><br />
<span style="color: #403152;"><strong>September 18, 2010 </strong></span><br />
36 teacher, wife, & mother from Jacksonville<br />
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<span style="color: #403152;"><strong>Amy Krambeck Campbell {IH}</strong></span><br />
<span style="color: #403152;"><strong>Nashville, Tennessee</strong></span><br />
<span style="color: #403152;"><strong>September 18, 2010</strong></span><br />
I have intracranial hypertension (IH) since 2005 following a stroke. This was due to 12 clots in the right side of my brain caused by clotting disorders. My spinal pressure is out of control and I have a shunt in my brain to help relieve pressure, but it isn’t enough. I have had 9 brain surgeries, 4 spinal surgeries, lost count of the spinal taps, numerous other surgeries and infections. I take between 12 and 15 pills daily to manage my blood and prevent seizures. She passed due to the clotting disorder after unrelated surgery.</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Ashtyn Jeanne Mulherin {Chiari}</strong></span><br />
<span style="color: #403152;"><strong>Langhorne. Pennsylvania</strong></span><br />
<span style="color: #403152;"><strong>October 15, 2010</strong></span><br />
19, had surgery for Chiari and then 8 days later she contracted meningitis and several other things went wrong. She spent 7 weeks on life support. <strong></strong></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Elizabeth Dinger Beckett{IH}</strong></span><br />
<span style="color: #403152;"><strong>Irving, Texas</strong></span><br />
<span style="color: #403152;"><strong>November 27, 2010 </strong></span><strong></strong></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Nahtyia Pennington {IH}</strong></span><br />
<span style="color: #403152;"><strong>December 30, 2010</strong></span></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Janet Walters {IH}</strong></span><br />
<span style="color: #403152;"><strong>Camby, Indiana</strong></span><br />
<span style="color: #403152;"><strong>May 2, 2011</strong></span><br />
Janet Walters was found on May 2, 2001 in her car after being told by her surgeons that there was nothing else that could be done for her. She was from Plainfield Indiana. She is survived by her husband and children.</div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><strong></strong></div><div class="entry" style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><div class="entry"><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Becky Harms {Chiari} {EDS} {Tethered Cord}</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Norway, Michigan</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>May 16, 2011</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;">She died in her home May 16, 2011 after several years of health issues due to Chiari Malformation. She is survived by her husband and children. <a href="http://tinyurl.com/3kq9dtz" style="color: #333333; text-decoration: none;"><br />
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</div><div class="entry"><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Michelle Marler McCollum {Mom of a Chiari Kid and Chiari Advocate}</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Amarillo, Texas</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>May 20, 2011</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;">Lost her 5 year battle with cancer. She had lost most of her leg and dealt with many infections in that leg on top of the cancer. Her son, Mason, is a Chiari Kid and Michelle worked long and hard as an advocate for her son and all Chiarians. She was a moderator for Chiari Connection International <a href="http://www.facebook.com/profile.php?id=1816625295" style="color: #333333; text-decoration: none;"><br />
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</span></a><span style="color: #403152;"><strong>Michelle MacDonald {Hydrocephalus} </strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Oshawa, Ontario, Canada</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>May 23, 2011</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;">Along with Hydrocephalus, Michelle had been fighting Septicemia and Diabetes<a href="http://www.facebook.com/notes/michelles-journey/may-23rd-2011/211739508859914" style="color: #333333; text-decoration: none;"><br />
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</span></a><span style="color: #403152;"><strong>Kristi Smith {Chiari}</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>Columbus, Ohio</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><span style="color: #403152;"><strong>May 27, 2011</strong></span></div><div style="color: #660033; font-family: Cuprum; font-size: 17px;">She passed away due to complications during her 5th decompression surgery.</div><div style="color: #660033; font-family: Cuprum; font-size: 17px;"><br />
</div><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><b><span style="color: #403152;">Shannon Paige Hudson Terry {Chiari}</span><br />
<span style="color: #403152;">Carrollton, Texas</span><br />
<span style="color: #403152;">May 31, 2011</span><br />
Mother of Madison, Wife of Joe. She passed from complications related to medications she was taking to manage her severe Chiari symptoms. She was 5 years post-decompression. <a href="http://www.caringbridge.org/visit/shannonterry" style="color: #2244bb;" target="_blank"><br />
<span style="color: #403152;">http://www.caringbridge.org/visit/shannonterry</span></a><br />
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<span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: small;"><b><span style="color: #403152;">Barbara Mostow Goldenhersh{EDS}</span><br />
<span style="color: #403152;">Belleville, Illinois</span><br />
<span style="color: #403152;">June 10, 2011</span><br />
Passed from complications from a blood clot in her interior jugular vein</b></span></span></div></div></div></h2></div>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com4tag:blogger.com,1999:blog-174378113488862250.post-37625411699505532992011-05-28T14:54:00.000-05:002011-05-28T14:54:58.202-05:00~ UNFORTUNATLY, my surgery was a complete FAIL!<span data-jsid="text"></span><br />
<div class="text_exposed_root text_exposed" id="id_4de13dfbb08c32892313514"><div class="text_exposed_root text_exposed" style="text-align: center;"><span style="font-size: x-large;">CONTENTS UNDER PRESSURE</span></div><br />
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So on Friday May 27, 2011 I go to Rush, in Chicago, for a Lumbar Shunt Revision. First of all this surgery was scheduled 10 days ago, and I check in at registration and the receptionist tells me that the procedure does not have authorization from my insurance, and I say why not? Th<span class="text_exposed_show">is surgery was scheduled 10 days ago... She says that I was an add on yesterday! WTH??? Which means that Dr Munoz's Nurse Practitioner DID forget about the surgery... She was supposed to call me last week to do consent over the phone, and she never did... I had to call her the day before surgery and remind her she never called for the consent! Anyway, I signed the paper saying I was responsible for all charges if insurance doesn't pay... Whatever! I was miserable! And I knew it wasn't gonna be a problem with the Insurance. So we get thru that, they take me back to the pre-op area where they do your vitals, and get gowned up... They don't have my History & Physical that I JUST HAD DONE ON MONDAY!!! I sat at my Dr's office for 3 hours (because it was a fit in appointment) to have this done and missed my best friends sister's burial to get it done... AND I TOLD THEM MY SURGERY WAS ON THURSDAY, JUST TO ENSURE MY PAPERWORK ARRIVED ON TIME! I thought I'd die when they said they didn't have my History & Physical... I told the nurse that I knew his number so they called 2x's to get it! I missed my surgery time because of that, so he took an emergency case... They finally got the H&P and I go upstairs to the holding area. I requested to see Dr Munoz before the surgery because I had a concern about the shunt placement. We discussed that first, he said he would do his best to move it without making another incision. Then we discussed the shunt and how it's not draining enough fluid, he told me & my husband right there that he was NOT going to change the valve setting, the only thing he was going to do was check the valve to make sure it was working properly, make sure there were no kinks in the tubing, and that there were no clogs... He argues with me about the setting of the programmable shunt, telling me that his documentation said I was fine at a 1.5 setting, and I said, "<u><strong>REALLY</strong></u>" when was that, because that damn thing was malfunctioning from the very get go... He argued with Jeff and I for about 5 minutes over this... So now I'm laying there, PRAYING that maybe it IS just clogged, or not working all together... So I finally get the IV with Versed, say goodbye to Jeff, and off I go... </span><br />
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<span class="text_exposed_show">I don't think my surgery was until 1:30pm, it was supposed to be 10:15am</span></div><div class="text_exposed_root text_exposed"></div><div class="text_exposed_root text_exposed">My Neurosurgeon opened up the previous incision (2nd time this shunt has had to be opened after initial placement) and shunt was indeed working, no clog, no kink, and it's draining jus<span class="text_exposed_show">t fine... So he closes me up, and he was done! I needed a different valve, one that would drain more fluid!!! As I laid there in the recovery room, my head was killing me, and was swooshing like CRAZY!!! I was beside myself that he did this! Put me thru all that, and NOT change the valve! I am soooo pissed off!!! He has been giving me an attitude and has been kinda standoff-ish ever since he put the programmable shunt in as a Lumbar Shunt and it Malfunctioned!!! GOD FORBID THAT SOMETHING "HE DID" DIDN'T WORK! So ~ sure enough, he opened me up, said it was working... And that was it! I NEVER SAID it wasn't working, I said I NEED more fluid drained off... </span><span class="text_exposed_show"><span data-jsid="text">Which means, I needed a different valve! The swooshing will drive someone CRAZY!!! I CANNOT STAND IT! And am SO LET DOWN right now! I kept telling myself on Thursday that in less than 24 hours I'll feel better! </span></span></div><div class="text_exposed_root text_exposed"><br />
</div><div class="text_exposed_root text_exposed"><span class="text_exposed_show"><span data-jsid="text">Friday on the way home from the hospital,<span class="text_exposed_show"> (it turned it into an outpatient procedure) I told Jeff the swooshing is horrible, and I feel like my head is in a vise... How can that be OK with any Dr? That your patients brain is compressed by all the fluid that is in there, and I cannot even function at Neuro-Rehab or anywhere else for that matter, because of the pressure... I was wide awake from 2am - 4am because I was in so much pain, my incision was very painful and my head is killing me. I had to get up and eat a banana so I could take my pain meds.</span></span></span></div><div class="text_exposed_root text_exposed"><br />
</div><div class="text_exposed_root text_exposed"><span class="text_exposed_show"><span data-jsid="text"><span class="text_exposed_show">And let me tell you, 9am on Tuesday I will be on the phone with my Neurologist telling her she needs to order me a spinal tap so I can prove my pressure is elevated! And that she needs to fax all of my information to IU in Indianapolis. Then I will be leaving Robyn (NS's Nurse Practitioner) a really nasty message about what he did & didn't do, She needs to remind him that the programmable shunt NEVER was set right, because it malfunctioned... </span></span></span> Then I will be calling my family Dr and demanding to speak to him about how I missed my surgery because his office didn't fax my stuff on time... And the only reason I would do that is because this is not the first time this kind of thing has happened. I called his office a week ago Monday and left a message, and I was at his office this past Monday and still NEVER heard back from them, and it was a question regarding a RX that he wrote me. </div><div class="text_exposed_root text_exposed"><br />
</div><div class="text_exposed_root text_exposed" style="text-align: center;"><span style="font-size: x-large;">CONTENTS UNDER PRESSURE</span></div>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com1tag:blogger.com,1999:blog-174378113488862250.post-5807467359855506052011-05-20T22:56:00.000-05:002011-05-20T22:56:36.513-05:00~If Tomorrow Starts Without Me~<div style="text-align: center;">If Tomorrow Starts Without Me…<br />
<br />
If tomorrow starts without me, and I’m not here to see,<br />
If the sun should rise you find your eyes all filled with tears for me;<br />
I wish so much you wouldn’t cry the way you did today,<br />
While thinking of the many things we didn’t get to say.<br />
I know how much you love me, as much as I love you<br />
And each time that you think of me, I know you’ll miss me too.<br />
But when tomorrow starts without me please try to understand,<br />
That an angel came and called my name and took me by the hand.<br />
He said my place was ready, in heaven far above<br />
And that I’d have to leave behind all those I dearly love. <br />
But as I turned and walked away a tear fell from my eye.<br />
For all my life I’d always thought, I didn’t want to die.<br />
I had so much to live for, so much left yet to do.<br />
It seemed almost impossible that I was leaving you.<br />
I thought of all the yesterdays the good ones and the bad.<br />
I thought of all the love we shared, and all the fun we had.<br />
If I could relive yesterday, just even for a while,<br />
I’d say goodbye and kiss you and maybe see you smile.<br />
But then I fully realized that this could never be,<br />
For emptiness and memories would take the place of me.<br />
When I thought of worldly things I might miss come tomorrow<br />
I thought of you and when I did my heart was filled with sorrow.<br />
When I walked through heavens gates I felt so much at home.<br />
God looked down and smiled at me from his great golden throne<br />
He said, “This is eternity and all I’ve promised you”<br />
Today your life on earth has passed but here life starts anew.<br />
I promise no tomorrow, but today will always last<br />
And since each day is the same there’s no longing for the past.<br />
You have been so faithful so trusting and so true.<br />
Though there were times you did some things you knew you shouldn’t do.<br />
You have been forgiven and now at last you’re free.<br />
So won’t you come and take my hand and share my life with me?<br />
So when tomorrow starts with out me don’t think we’re far apart,<br />
For every time you think of me, I’m right here in your heart.</div><div style="text-align: center;"> </div><div style="text-align: center;"> </div>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-33543351155783734442011-05-09T08:48:00.000-05:002011-05-09T08:48:55.212-05:00Lawyer Appt & Follow up with New Neurologist<div class="mbl notesBlogText clearfix"><div>So Jeff & I went to see a Lawyer on Tuesday 5-3-11 RE: filing an appeal for Social Security Disability Income. I have NEVER met with a lawyer, ever... So needless to say I was scared to death! She asked a lot of question's, and I told her what's been going on since 2003, and who my Dr's were... She agreed to do the case, we agreed to hire her! We were there for a few hours, due to the Appeal paperwork that needed to be filled out. She wanted answers to all the test I had done for the "new neuro Dr" but I didn't have a followup appt with her until the next day to get those results. She said if I have "dizziness" (Ataxia) that I would be golden for SSDI, because neither one of my conditions are SSDI approved... I told her I had a ton of tests done, but don't know the results... Jeff & I had mixed emotions when we left the office. Bitter Sweet. When I had the tests done, I prayed nothing else was wrong with me, now I'm praying there is something else wrong, to help this process go smoothly since IH & Chiari are not approved disabilities... The next day, we meet with my new neuro to get all the test results.<span data-jsid="text"> Our Lawyer used to work for SSD, that's how she got into helping people "fight" for it. She said that it's a proven fact that people who have "dizziness" CANNOT work... That's why it was Bitter Sweet. I surely don't WANT any more things wrong with me... But it is already broken, I've already lost my job, it's PROVEN by tests that I AM DIZZY!!! Lol... I think we knew that! </span><br />
<div class="text_exposed_root text_exposed" id="id_4dc44851ada350d42203290">The next day, Wednesday 5-4-11 we see Dr De Leo (new neurologist), she meets with me at 8am, before regular patients! I had 100% of her attention, she made "special time" to meet with me!!! Well, as it turns out, I do have some serious Vestibular Disorders! I suffer from Dizziness!!! BONUS! I<span class="text_exposed_show">'m only happy about that because I started to feel like people didn't believe me, that all the times I have to pass on "get together's" parties, special occasions, etc... I now have proof! Lol... I have something serious going on in my right ear, inner ear, she wants to prescribe me a med, but wants me to think about it/research it right now! (I liked that! She didn't shove pills down my throat) I also have issues with my left ear, not as sever as the right side. My MRI, is just a constellation of problems, slit ventricles, Chiari, decompression surgery... I need to have another shunt revision, she really wants me to get a "programmable" shunt, but we already know how that turned out once already, but she seems to think that with "enough" weight loss, that a programmable one will work for me in the future. Dr De Leo is going out to dinner w/ my Neurosurgeon, Dr Munoz, later this month and they are to discuss this! (I like that too!) I also have another issue that I've been fighting with Dr's about for years. I have a Positive ANA... AGAIN!!! It comes & goes, I've been trying to get a Dr to look into it, but they always say it's no big deal, well this time, my # was sky high... It needs looking into now! ANA is Antinuclear Antibody = autoimmune disorder/disease... To go along w/ it, my ESR & C-Reactive proteins are very high, which is also an indicator of autoimmune disease... And to top it all off...I am here today at my Dr because I need to get a follow up chest CT, because the one I had done in Feb. showed a spot on my lung. So on Tuesday May 10th I go for a CT scan with & without Contrast...</span></div></div></div>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-68376206493213101632011-05-09T08:44:00.000-05:002011-05-09T08:44:45.508-05:00The Spoon Theory written by Christine Miserandino<a href="http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/">The Spoon Theory written by Christine Miserandino</a>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-84368396715482287582011-04-12T12:16:00.003-05:002011-04-12T12:59:11.130-05:00Results of Lundbeck's Donation of $10,000 to NORD for Raise Your Hand!<div id="banner" style="background-color: white; color: #109ac6; font-size: 12px; margin: 20px 20px 0px; padding-bottom: 20px; padding-left: 20px; padding-right: 20px; padding-top: 20px; text-align: center;"><h1 style="font-size: 28px; font-weight: 700;"><img border="0" dfsrc="http://i1.cmail1.com/ti/r/62/240/A9A/090455/csimport/new_nord_banner_0.jpg" height="100" src="http://i1.cmail1.com/ti/r/62/240/A9A/090455/csimport/new_nord_banner_0.jpg" width="300" /></h1><h1 style="font-size: 28px; font-weight: 700;"> Rare Disease Day Partner</h1></div><h2 class="item" style="background-color: #3c6895; color: white; font-size: 16px; font-weight: 700; margin: 0px; padding-bottom: 10px; padding-left: 20px; padding-right: 20px; padding-top: 10px;"><img border="0" dfsrc="http://i2.cmail1.com/ti/r/62/240/A9A/090455/csimport/rdd_logo-bg_1.jpg" height="67" src="http://i2.cmail1.com/ti/r/62/240/A9A/090455/csimport/rdd_logo-bg_1.jpg" width="100" /> <a href="http://www.blogger.com/" name="4EE9F8FDA4CDA125"></a>Thank you for Raising Your Hand to Fight Rare Diseases!</h2><div class="desc" style="background-color: white; color: black; font-size: 14px; margin: 0px; padding-bottom: 0px; padding-left: 20px; padding-right: 20px; padding-top: 10px;"></div><div class="item" style="margin: 20px 20px 40px;">In the weeks before Rare Disease Day 2011, many of you circulated the <em>Raise Your Hand to Fight Rare Diseases</em> icon to your members and friends. Lundbeck Inc. had made a commitment to donate $1 for each click on the icon, up to $10,000, to NORD's General Research Fund. That fund supports research on rare diseases for which there are few other sources of funding.</div><div class="item" style="margin: 20px 20px 40px;">Thanks to your amazing support, there were more than 11,000 clicks on the Raise Your Hand icon! As a result, Lundbeck has made an unrestricted donation of $10,000 to NORD's General Research Fund.</div><div class="item" style="margin: 20px 20px 40px;">NORD's Research Committee decided to allocate the donation to an existing restricted research fund for diffuse scleroderma, also known as systemic sclerosis. That fund was established several years ago by patients and their families. It has received a steady stream of small donations over the years, but was still several thousand dollars short of the amount required ($33,500) to fund a grant.</div><div class="item" style="margin: 20px 20px 40px;">The Lundbeck donation has made it possible to fund a grant this year. Recently, NORD posted its <span class="Object" id="OBJ_PREFIX_DWT449"><a href="http://nordenews.cmail1.com/t/r/l/jydihdt/bpjiyhkr/t/" target="_blank">Requests for Proposals for 2011</a></span>.</div><div class="item" style="margin: 20px 20px 40px;">NORD has received many emails over the years from patients who have this very disabling rare disease. One patient recently wrote: "Please work hard on behalf of all of us who are trying so hard to maintain a quality of life."</div><div class="item" style="margin: 20px 20px 40px;">Your clicks to "Raise Your Hand" will give new hope to these patients and their families. Thank you for supporting this important campaign on behalf of rare disease research! </div><br />
<br />
<br />
<center class="item" style="margin: 20px 20px 40px;"><img alt="" border="0" dfsrc="http://www.rarediseases.org/images/hand.jpg" height="189" src="http://www.rarediseases.org/images/hand.jpg" width="331" /></center><br />
<div class="item" style="margin: 20px 20px 40px;"><br />
<em>(This was the icon shared by many with friends and family in the weeks before Rare Disease Day 2011.)</em></div><div class="item" style="margin: 20px 20px 40px; text-align: center;"><strong><u>THANK YOU TO ALL MY FRIENDS & FAMILY WHO CLICKED ON THE LINK!</u></strong></div>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-68615398203459601122011-04-04T14:14:00.000-05:002011-04-04T14:14:18.542-05:00Appointment with "New" Neurologist ~ Finally...<span style="font-family: inherit;">On Feb 9th (I think) I made an appointment with the Neurologist my Neurosurgeon referred me to, Her name is Dr. Andrea De Leo. Her Office is in Munster, IN. Her first available appointment was not until Monday, March 28, 2011 "NOTHING" earlier, I thought I'd die when I heard the receptionist say that! So I waited weeks, and had a few more surgeries!</span><br />
<br />
<span style="font-family: inherit;">My husband started his new job with the Boilermakers the week prior to my appointment. He was called out on a job that was 5-12hr shifts, and then it would be done, he would have to wait to be called out on another job... Someone was looking down on us that Monday morning of March 28th, because thankfully he did NOT get a call to start another job that day, and he was able to accompany me to this new Dr's appointment. (He did get called on Tuesday to start on Wednesday thank God!!) It's not that I didn't have a way to get there, it's just NOBODY knows you better than your spouse, and my brain is so screwed up that I can barely remember what I did yesterday, let alone going through my whole history, again... with a new Dr.</span><br />
<br />
It's a short drive to Munster, THANK GOD! Lol... I have horrible Anxiety in the car!<br />
<br />
Dr Munoz sent over an letter to Dr. De Leo, introducing me to her (re: my history), and she got my records from my prior neurologist, that I only saw about a dozen times, and I brought my most recent Head CT & MRI for her to review. To my surprise when she walked into the room, she was either my age or just a bit older... She is a Vascular Neurologist, and SHE was totally blown away while I'm telling her my story. She sat with my husband & me for almost 2 hours, and she <u><em><strong>never</strong></em></u> rushed us!!! <br />
<br />
She did the "regular" Neuro Exam after I told her my very lengthy story, but she performed some things I've never seen or had done before. I don't even know what they were to tell you! I really liked her, for a first visit. I guess I will need to see her a couple of times before I have a true opinion of her... BUT so far, so good! : ) My last Neurologist treated me like all I wanted was drugs, even though I NEVER once asked him for anything, except a spinal tap when I knew I was having Shunt Malfunction. He didn't believe me in May 2010 when I told him something was going on, then in September 2010 (still having issues) I told him I needed a Spinal Tap and that my shunt wasn't working properly, and he told me that there was nothing wrong with my shunt, and that he couldn't help me any longer. Later, I got a letter from his office in the mail, they cancelled all my future appointments, and told me he would no longer see me as a patient! Then in October 2010, I had a spinal tap ordered by my NeuroSurgeon, and sure enough, my pressure WAS elevated... Dr. De Leo was blown away by his actions, and she seems <strong><em><u>VERY sincere</u></em></strong>, and <u><em><strong>interested</strong></em></u> in getting me better...<br />
<br />
These are the tests that she ordered for me...<br />
<br />
CDP ~ Computerized Dynamic Posturography- balance test <br />
VNG ~ Videonystagmography - for testing inner ear and central motor functions<br />
ABR ~ Auditory Brainstem Response - a screening test to monitor brainstem response and hearing loss.<br />
VEMP ~ Vestibular Evoked Myogenic Potential - is testing on the inner ear. (Balance & Dizziness)<br />
TCD ~ Transcranial Doppler - measures the velocity of blood flow through the brain's blood vessels.<br />
EEG ~ Electroencephalograph - records the electrical activity of the brain.<br />
Neuro-Rehabilitation with an Occupational Therapist, due to balance & dizziness issues.<br />
<br />
~A new Sleep Study - Apparently, when you have Sleep Apnea, you should be tested once a year! I haven't been tested since the original test in August 2009. I developed Sleep Apnea because my Chiari Malformation narrowed the space in my neck.<br />
<br />
~Referral to my Ophthalmologist ~ Dr Scott Cory, I have Papilledema in both eyes, Right eye is worse, due to Chronic Intracranial Hypertension, she ordered a bunch of tests for him to perform.<br />
<br />
~Referral to a Neuro-Ophthalmologist for possible Optic Nerve Sheath Fenestration surgery, to relieve the Papilledema. Dr. James Goodwin @ UIC in Chicago.<br />
And lastly~ a referral to a therapist for my depression... : ( Ughhhh... Tried it once before, & HATED it.<br />
<br />
Lastly - Dr De Leo wrote me off work for another 8 weeks while I get all these tests done! My new return to work date is May 16, 2011.<br />
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<u><em><strong>Quote of the day from a FB friend.</strong></em></u><br />
To feel pain, is to have feelings. <br />
To cringe at the light, is to see, <br />
To run from the noise, is to hear. <br />
To have a bigger brain than most, is a heavy medal to wear, yet we think deeply!<br />
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<br />
I am very thankful for all my new friendships, especially the ones who are right in my own back yard!!!<br />
<div style="text-align: center;"><strong><em>NOBODY can relate you my problems like a fellow IH'r & Chiarian...</em></strong></div>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-12536699240419758912011-04-02T08:00:00.002-05:002011-04-02T08:00:02.905-05:00People living with a chronic illness need you to be there, even if they have trouble saying it.<span style="font-family: Times, "Times New Roman", serif;">Since being diagnosed with 2 chronic illness's, Intracranial Hypertension (IH), & Chiari, I have gone through a lot. Both are often an invisible illness, and many times it is not fully understood what we go through on a daily basis. Please read what I have copied below and try to understand a few important things that we want you to know. </span><br />
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<span style="font-family: Times, "Times New Roman", serif;">Chronic illness isn't something that we like to talk about, but every day people are diagnosed with an incurable illness or disease. Learning to care for and support family and friends with a chronic illness takes time and patience. When the patient is first diagnosed, everyone in the circle of family and friends gathers the wagons. If the initial diagnosis involves hospitalization, some will visit, others will cook food, and still others will offer to babysit or clean house. <strong><em>Everyone</em></strong> wants to help out in any way possible. This is a great way to show your support and friendship. </span><span style="font-family: Times, "Times New Roman", serif;">The problem with chronic illnesses is that, because they last over time, usually the extensive support system <em><strong>disappears</strong></em>. People get tired of erratic hospitalizations and days on end when the illness puts the patient down for the count for a week or more. It is easy to become immune to the painful complaints of the patient, but is essential that you do not. We still need you to be there. </span><br />
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<span style="font-family: Times, "Times New Roman", serif;">If you are a friend, family, or caregiver of a chronically ill person, commit to that individual and yourself that you are willing to stick with them through thick and thin, in sickness and in health. The chronically ill need to know that you understand and that you care. At some point in the illness most patients begin to assume that anyone who sticks with them is doing so out of obligation. Find every way possible to assure the patient that you are standing beside them, going to doctors' appointments, or spending nights in the hospital because you care. It is up to the caregiver and friends to help allay the concerns of the patient that they have become a burden. </span><br />
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<span style="font-family: Times, "Times New Roman", serif;"><em>Unless you have had a chronic illness yourself, you cannot imagine the mental battle that goes on in addition to the physical battle that we as individuals are facing</em>. Sometimes, previously vital and healthy people are struck suddenly with the symptoms of their illness. They may be aggressive, <em><u>hard workers</u></em>, productive people in society. <em><strong><u>When they are taken out of the game, they suffer a huge blow to their sense of self-worth. They may feel very lonely and become depressed as time goes on. </u></strong></em></span><br />
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<span style="font-family: Times, "Times New Roman", serif;">As a friend or family member, you can play an important role in two ways. You can affirm their worth verbally, via emails, Facebook, or cards. You can't tell them enough how important they are, and how valuable they are as a human being. You can also help build their self-worth by encouraging them to do the things they feel like doing. Don't treat them like invalids, especially on a good day, if they feel like getting out and doing something, do it. Don't wait. The next day, or even the next hour their physical stamina can wane. </span><br />
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<span style="font-family: Times, "Times New Roman", serif;">Remember, when they get weak, can't do things you want to do, or lack the spontaneity they once had, it is the illness that has caused the change. You are the healthy one, and must not take declined invitations personally. Because the chronic illnesses, by definition last over the long haul, you may have to remind yourself of this again and again. The one who is ill is engaged in the battle head-on. They are fighting to regain health and some sense of control in their life. </span><br />
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<span style="font-family: Times, "Times New Roman", serif;">People living with a chronic illness need you to be there, even if they have trouble saying it. You are an important part of their life and you play a vital part in their recovery.</span>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-85928099231813068002011-04-01T10:00:00.003-05:002011-04-01T10:00:00.905-05:00"My Neurosurgeon Removed My ~ Give-A-Damn Filter"<span style="font-family: Times, "Times New Roman", serif;">~ DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY DECEIVING. MANY DAYS I LOOK GREAT, <em><strong>BUT I</strong></em> <em><strong>FEEL TERRIBLE</strong></em>.</span><br />
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</span><br />
<span style="font-family: Times, "Times New Roman", serif;">~ DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS. TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED TO BE REMINDED.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD FOR BOTH OF US TO BE MISERABLE.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO IT TODAY. CHIARI & IH ARE EVER-CHANGING.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, <strong>NOT WITH YOU</strong>.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE GRATEFUL.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI & IH ARE LIKE THAT.</span><br />
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<span style="font-family: Times, "Times New Roman", serif;">~ DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU FOR THE PICNIC AT THE END OF THE TRAIL. <strong><u>PLEASE LET ME DECIDE</u></strong></span>Beautifully Afflictedhttp://www.blogger.com/profile/14028895468857653813noreply@blogger.com0tag:blogger.com,1999:blog-174378113488862250.post-70623978879754927012011-03-31T17:40:00.000-05:002011-03-31T17:40:34.274-05:00The IH (PTC) Creed<span style="font-family: Times, "Times New Roman", serif;">The IH (PTC) Creed I promise to accept the fact that I have IH, a neurological disorder which will limit my abilities in my every day life.While I will always have IH, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind. I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner. I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it appears like it already has in my eyes. I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me <strong><u><em>flat on my back</em></u></strong>. I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in <em>worse</em> shape than I am in. I will not be sorry for what I don't have, but am thankful for what I do have. I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh. <strong><em><u>I will try to help others who also suffer from my condition.</u></em></strong> There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right direction. Lastly, I will not ask "Why me?" While IH has weakened my physical body, it has strengthened my heart, my soul, and my spirit. </span><br />
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