tag:blogger.com,1999:blog-26620107537859093682024-03-05T02:20:14.146-05:00Glowing In The Dark“Learning how to shine in the darkness of life while spreading a little glimmer of hope along the way”Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-2662010753785909368.post-41104142500293918902013-10-16T03:00:00.000-04:002013-11-19T23:28:27.032-05:00Keep on Dreamin'<!--[if gte mso 9]><xml>
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<br />
When it comes to life and all the things you wish it entailed, dreaming is
believing and believing is achieving! Having aspirations in life to work
towards, goals to conquer, and fears to overcome is undoubtedly one of the most
important things in leading a strong minded and positively happy life!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtbfbrcdAv4NA-izV-qWOdx4OOnI5t70Zj4d_8qLpXCXgsPwXJoBRTXnthUGXF-y-3MK4EPfQGrWuLCBt8eYWF8MRZRZ7G4r3GZPOSwIGpQZlDa_zWlU3auOslK00bjvqaEJZ2n5CSxIM/s1600/galaxy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtbfbrcdAv4NA-izV-qWOdx4OOnI5t70Zj4d_8qLpXCXgsPwXJoBRTXnthUGXF-y-3MK4EPfQGrWuLCBt8eYWF8MRZRZ7G4r3GZPOSwIGpQZlDa_zWlU3auOslK00bjvqaEJZ2n5CSxIM/s1600/galaxy.jpg" /></a></div>
<br />
You, yourself are your biggest distraction. There are always going to be
obstacles in your path, there will always be excuses to be made, life's karmic
effect will surely happen at least twice; but the thing that will beat you down
the most is your own negative thinking. The world that we live in today is
filled with negativity that is constantly being thrown in your face.
Newspapers, TV, radio; some form of negative media is almost always being
absorbed by your body. And whether you choose to believe it or not it takes its
toll on you, secretly seeping into your brain attacking your joy receptors. Positivity,
after all, is your best friend!<br />
<br />
<br />
As a child everyone dreams of what they want to be when they grow
up. Of course not many of us actually follow through and become cowboys or Disney princess's but we had the right idea. We all had that imaginary job or
person who we envisioned to become that made us happy. Simply happy! We weren't
worried about money or bills, social acceptance or approval. And that's what we
all need to remember! Yeah, we do all grow up and the real world that is all
about money and time smacks us in the face but that shouldn't take away from
our happiness. For those of us who had our imaginary dreaming days cut short by
the real world of a chronic illness (or anything else for that matter) we to
quickly learned that life is not all peaches and cream. There is a large group
of people that never had the chance to experience growing up or go through the
stepping stones to building dreams and how to achieve them. That's why I think
it is all the more important for those people to not let their dreams wither
away.<br />
<br />
So if life has dealt you a folding hand and your dreams haves dwindled, at
least save them from shriveling up and dying. Revitalize your dreams by pursuing
them as a passion or hobby if nothing more. Yeah if your dream was to become an
astronaut or pterodactyl you may find difficulty in taking that up on an amateur
level. But don't let negativity push you away from what you love. If nothing
more you can get a season pass to the planetarium or prehistoric museum. And if you can't quite make those dreams come true just yet, keep fueling them with love and positivity and hopefully one day soon your dreams will come true. <br />
<br />
Your dreams are yours and yours alone! So if you don't keep hold of them in
hopes of achievement then who will?Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-26718192501769479722013-08-17T03:00:00.000-04:002013-11-19T23:44:46.800-05:00Stepping Back Through The Looking Glass<span id="goog_977514286"></span><span id="goog_977514287"></span><span id="goog_1403453202"></span><span id="goog_1403453203"></span><span id="goog_851303515"></span><span id="goog_851303516"></span><span id="goog_759370262"></span><span id="goog_759370263"></span><!--[if gte mso 9]><xml>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><b>Would you go back to the other side? </b></span><br />
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><b></b></span><br />
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<br />
If you were given the opportunity to step through a looking glass, going back
to a time before you fell ill and erasing your life as you now know it, would
you take the leap? </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Would you take the chance to start over and live your life again without
the pain and suffering you have endured without any knowing of what your life
would have become? </span></div>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQJ717PX1mEMvwQ-1CaT_8KvGyE6doqycYAAJA3t703Crsp7f_aYqlkTIonz-w6sr9-aR_C05UAqL33ZhsZ6WJVMJWkWAJ4hHG4m4ohFZ36oZ5dUsNpUJwWD2KDyOUmwMe9qBx3MwsF88/s1600/mirror-lab-1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQJ717PX1mEMvwQ-1CaT_8KvGyE6doqycYAAJA3t703Crsp7f_aYqlkTIonz-w6sr9-aR_C05UAqL33ZhsZ6WJVMJWkWAJ4hHG4m4ohFZ36oZ5dUsNpUJwWD2KDyOUmwMe9qBx3MwsF88/s320/mirror-lab-1.jpg" width="320" /></a><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">When your memories of being happy and healthy are things of the past and a
chronic illness has devoured a significant part of your life being presented
with the chance to wish it all away and start anew would be an almost
irresistible offer. Being able to live the life you always imagined and
becoming the person you always wanted to be with no reminders of the tragedies
you have had to endure would be a blissful way to live. Having all your
possible wants and desires come into fruition and not knowing any other way of life would be as if
all your wishes upon falling stars and birthday candles had come true. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Take a moment to think though...<br />Would you be willing to lose what you have learned throughout your life’s trials and tribulations? All the lessons you have been taught would not be
remembered nor the wisdom or patience you have gained throughout your illness. Would
overlooking all the negative in your life be worth disregarding all the good too? <span id="goog_1798527163"></span><span id="goog_1798527164"></span></span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">If the opportunity was given to me to step back through my own looking
glass, and my life as it is now would be forgotten, I am not sure I would
accept the offer. Even though my life has been one of difficulties and
challenges and I would love for it to be simpler and more vivacious, I would
not want to jeopardize the understanding of life I have come to obtain nor the
amazing people that have been placed in my life because of my illness. I firmly
believe my life was given to me to endure for a purpose. I may not know that
purpose now, perhaps I never will, but I accept it for what it is and try to
see the good that has come from the bad. I like to think that because of what I
have had to go through that I have become a kinder hearted person that tries not to
judge people so quickly and to understand others more deeply. </span></div>
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<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Aside from all the pain, suffering and unexpected directions your life has
taken you, haven’t you gained some things from your illness? Considering this
is real life and we are unable to take a step back in time through a looking
glass to a new beginning we must take time to remember the positive things in our lives, whether
those lives are of good health or bad. So take a look in the mirror at yourself
and your life as a whole and truly see what you have to be thankful for. <span id="goog_350408231"></span><span id="goog_350408232"></span></span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com1tag:blogger.com,1999:blog-2662010753785909368.post-88773106238668177422013-07-03T03:00:00.000-04:002013-07-03T03:00:04.234-04:00525,600 minutes- One Year Ago<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiWCizYjy8o9fotwIXO4mrWaysD8QxZNLxzYu27GWvBVMQPQlOdubQGZt1fCE4KcjwvfKVThR-6T2f2I-UWq_0upFApUtnsF2kuExPfkE-1nbF1MADywtVK_zOchFlAmJjRoKzhAm8QBA/s548/neon+brain.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiWCizYjy8o9fotwIXO4mrWaysD8QxZNLxzYu27GWvBVMQPQlOdubQGZt1fCE4KcjwvfKVThR-6T2f2I-UWq_0upFApUtnsF2kuExPfkE-1nbF1MADywtVK_zOchFlAmJjRoKzhAm8QBA/s200/neon+brain.jpg" width="185" /></a><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><b>July 3rd, 2013 3:00 am </b><br />
A year ago today at this time, before the sun had rose and the moon still stood
high in the sky I laid on a comfortably worn in couch watching a movie in Spanish.
As the night owl that I was (and still am), sleep was no place close as I tried
to follow the movie, a task made even more difficult by the dizziness I was
having from new pills swirling through my blood stream. What would be taking
place in a mere 4 hours or less was not a pressing thought in my mind.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">As six o’clock rolled around the sky still stood dark as
did my mind to the understanding of the movie I had watched earlier. As my
mother attentively got ready I finished packing my bag for my hospital stay. I
could easily sense the nervousness in my mother’s demeanor masked with
sleepiness while she rushed for us to leave on time. I looked around the
apartment once more making sure I had everything I would need. As my mother
opened the door to the dawning sky I put on my sunglasses.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">We arrived at the hospital a short ten minutes later, the
air cool and crisp; very refreshing from the one hundred plus temperatures we
had been encountering every time we ventured outdoors. At the registration area
there were a few people scattered around the waiting room, once my name was
called we went into the office. A lady presented me with the paper work to sign
and even as I was faced with signing “yes” to this whole ordeal no fear had yet
engulfed me. </span></div>
<div class="MsoNormal" style="margin-left: 0.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">My mother and I were then led to the surgery holding
area. As I said goodbye to the warmth and comfort of my own clothes and garbed
myself in the hospital gown a strange sense of familiarity came to mind. This
was a process I was used to. Moments later a woman entered my curtained cubicle
speaking very quickly asking me why my hair wasn’t braided and ordering me to
put on my fashionable hospital socks while she strapped numerous bracelets to
my arm. Then a younger girl, around my age cautiously approached me, introducing
herself, stating that she was a medical student, asking if she could observe my
surgery. I paused for a brief moment and replied to her with an enthusiastic
yes. My reason for agreeing was because if I had the chance to watch another person
have their skull sawed on and their brain prodded I would definitely want someone
to give me permission (I know, I was and still am weird like that).</span></div>
<div class="MsoNormal" style="margin-left: 0.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">A few minutes and a handshake from my surgeon later I was
being taken back to the operating room as my mother told me goodbye and “Sleep
good”. It wasn’t until that moment that it actually hit me that I was having
brain surgery! And yet still I wasn’t nervous, a calmness and excitement to be
able to get some sleep consumed me. The anesthesiologist introduced himself as
the drugs began to flow. He made small talk by asking me where I was from and
that he was familiar with the area of the South I was from and that he enjoyed the beaches. </span></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">I vaguely remember being wheeled to what was either the
recovery room or ICU and the surgeon asking me how I felt, my reply being a
thumbs up. When I awoke, what my brain perceived as only a few hours later,
which in truth was about eight or nine, I was in my ICU room. My mother asked
me the routine “how do you feel?” question but I remember that my first
significant concern was “Are they giving me pain meds?” I knew they must have
despite my telling them not to because I felt incredibly nauseated. When the
nurse came in I asked this again and she said yes; even though I didn’t push
the button on my pain pump, every 15 minutes a small amount was administered. I
demanded she stop it and unhook me from the pump, she looked very confused that
I was refusing pain meds. Moments later I vomited and I think she understood a
little more clearly why I don’t take pain meds. One; they don’t help the pain
at ALL and two; they make me sick, really really sick! Then I had to refuse the
additional Vicodin every four hours. Who knew how difficult it would be to
refuse taking pain medication? A matter made even more difficult when you have
to try to explain to people that yes you are in pain but that the medication
only makes matters worse. </span></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">The next morning the assistant surgeon came in to check
on me. She pulled the bandage off the back of my head to check the incision. Oh
Holy Headache Batman! It hurt! I’m fairly certain that was the worst part of
the whole ordeal. She took a picture of the back of my head so I could see and
I was shocked. The scar was much larger than I imagined; 5.5-6 inches long and 27
staples in total. Not to mention the new reverse mohawk I was then sporting. </span><br />
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><br /></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf_BrPR_j1ZLETspPptOUf-vkl6l0UUz6fPdl8US2oYVNIJbgfvJ4YASSkpcP9sHOVmBDkNewnBp6xCldFeqnf6tXgq2oTsgT7aiWFHXbAojskm_HYxm_HyMZgt_5KXsBRX8wektIw1UE/s1600/0705020718.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf_BrPR_j1ZLETspPptOUf-vkl6l0UUz6fPdl8US2oYVNIJbgfvJ4YASSkpcP9sHOVmBDkNewnBp6xCldFeqnf6tXgq2oTsgT7aiWFHXbAojskm_HYxm_HyMZgt_5KXsBRX8wektIw1UE/s200/0705020718.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My incision the day after surgery. </td></tr>
</tbody></table>
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">The rest of my three day stay in the ICU was as pleasant
as it could have been. If it weren’t for the fact that the doctors were,
concerned for lack of a better word, that I wasn’t sleeping or eating I
honestly would have been ok to go home the day after surgery. Little did they
know, or believed when I told them that that was completely ‘normal’ for me. Yeah
I was in pain, yes I indeed did feel like my brain had been used as playdoh (at
least what portion of my head didn’t feel like a cement block) but the pain was
not much worse than my everyday, 24/7 chronic pain. I was more bummed about
having to stay in the hospital for the fourth of July, missing any attempt to see fireworks. </span></div>
<div class="MsoNormal" style="margin-left: 0.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">When I was released from the hospital my mother and I gladly ventured
back to our home away from home in the West and the comfortably worn
in couch was once again my companion for two weeks to allow my body time to rest, heal, and to have my
staples taken out before heading back South. </span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="MsoNormal" style="margin-left: 0.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Overall, despite the pain, fatigue, and having my head
hacked open I really enjoyed the month I got to live in Colorado (even though it didn't snow). Most importantly
I was so happy to know that my brain was fixed (or at least part of it). Even
though I didn’t see drastic improvements right away or that even today I’m not
magically healed, small improvements were made! And the most important factor
to me, the reason I had the surgery, was that I now know that the problem isn’t
getting worse and that I prevented myself from having to endure potentially
further debilitating symptoms. The past year was one of ups and downs but in
the long run I believe it has been much more positive thanks to the brain
surgery! </span></div>
<div class="MsoNormal" style="margin-left: 0.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><b>July 3<sup>rd</sup>, 2013</b>, today on my one year
anniversary I would like to once more thank everyone who from the kindness of
their hearts donated to the fundraiser that allowed me to have the surgery! </span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-54406977298089758222013-06-07T03:00:00.000-04:002013-06-07T13:45:49.349-04:00Life Is A Puzzle<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiexe2eBOpEGqHOX_JKm5QDytnkJIgSi5WdC8ALwz3aovZVrp9q1gtZbCPMeiMxm9Tn0QuchL1BqBtAHoPMH69jLgoo1q-su_Dd_5adD8wxiN-eIi1aQgGXK-im0CwH_3ZNr3UBlPrqsA/s1600/meaning+of+life.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiexe2eBOpEGqHOX_JKm5QDytnkJIgSi5WdC8ALwz3aovZVrp9q1gtZbCPMeiMxm9Tn0QuchL1BqBtAHoPMH69jLgoo1q-su_Dd_5adD8wxiN-eIi1aQgGXK-im0CwH_3ZNr3UBlPrqsA/s400/meaning+of+life.jpg" title="Meaning of Life" width="400" /></a></div>
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<![endif]--><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">The meaning of life is an enigmatic thought that can be
examined and questioned until the end of time. Life can be broken down into
textbook understandings and yet still leave thinkers in a reverie daze. When
looking at life through a looking glass in a metaphoric way we can much more
clearly see how everything in life, every decision we make has meaning in our lives. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"> Life is a puzzle with millions of pieces that intricately
fit together to form a picture that hasn’t even been created. Every moment of
our lives, every challenge we overcome, and every diagnoses we may receive is
one piece closer to completing our life’s puzzle. </span></div>
<br />
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">When we are born we are simply a pile of puzzle pieces. As
we grow and experience life pieces start to link together and a small glimpse
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pieces. Those moments are the struggles we will face in life. We will have hard
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are! Some puzzle pieces may look perfect and we are so overjoyed when we
finally find them and despite trying to squish them into place, they just won’t
work. As the picture becomes more complete the pieces will start to fall into
place more quickly. We just have to keep trying, piece after piece until we
figure it out. <br /><br />
And when your puzzle is nearly complete or if you are just starting out, if you
feel like you still have missing pieces that’s ok. I have accepted that I will
always have a missing piece to my puzzle, a certain unknown factor in my life
and that is just fine with me. <br />
<br />No matter how many pieces are missing to the puzzle the picture will always be
beautiful! </span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-84884596940882169752013-05-04T03:00:00.000-04:002013-05-04T03:00:15.152-04:00Gaming For A Cure<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0vSiQwYow-o3XGvVCkVnNRPegGEOkzy9o1FOgpRmJ_kn8oo6SQ2ugqcqUOEoCOsTP_H6bW8xrtuzqIHvB2i2DjbbUlxgqXxKX13SFi145v7EaGj22f8UMFpsXjINgL2pgQQOk2FjjoeU/s1600/protein.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0vSiQwYow-o3XGvVCkVnNRPegGEOkzy9o1FOgpRmJ_kn8oo6SQ2ugqcqUOEoCOsTP_H6bW8xrtuzqIHvB2i2DjbbUlxgqXxKX13SFi145v7EaGj22f8UMFpsXjINgL2pgQQOk2FjjoeU/s1600/protein.jpg" /></a><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"> </span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"> Wouldn’t it be great if merely playing video games could
cure Cancer, AIDS, or even Lyme Disease?<br />
That is exactly what the University of Washington’s Center for Game Science and
the Department of Biochemistry had in mind. Adrien Treuille, an avid game
inventor lent his expertise to Rhiju Das, a biochemist that needed help solving
protein puzzles to help cure diseases. Treuille’s and Das’ intellectual
collaboration created the ever growing in popularity online game, ‘Foldit’. </span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><br />
Where computers were not the elite problem solvers for protein folding Treuille
used crowd sourcing to recruit gamers to find the answers they needed. The
player’s ability to predict possible patterns in the proteins was something
that no computer had yet accomplished. The games goal is to optimize protein prediction
and eventually use protein folding strategies that the players discovered to
create protein prediction software. Another advantage and anticipated goal of
the game is figuring out the structures of infectious bacteria proteins and
creating new proteins that may be able to kill virus and other harmful
proteins. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><br />
Could this video game be the answer to finding cures for the most plaguing
diseases? It may not rid the world of all its sickness and problems but the
game has already had success in the science lab. The Mason-Pfizer monkey virus
had stumped scientist for 15 years and the Foldit community figured out the
protein structure in just 10 days. So I think there is hope to be had here. </span></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgacJlw07azd9uFlYBtx29DmH3vQnFJGDWSHxcUas2Nv4_x4yRr51SndbKIV7r5H_NBZ6XxeSzieENWY0P8ko_qKEAa8hyKOnKhNsKRXAm0zjJ2Ns7lTFQqpgjWoFR_XLJs-i69HkkS28M/s1600/Foldit.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="121" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgacJlw07azd9uFlYBtx29DmH3vQnFJGDWSHxcUas2Nv4_x4yRr51SndbKIV7r5H_NBZ6XxeSzieENWY0P8ko_qKEAa8hyKOnKhNsKRXAm0zjJ2Ns7lTFQqpgjWoFR_XLJs-i69HkkS28M/s200/Foldit.jpg" width="200" /></a><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Want to play? But science isn’t your forte? Don’t worry;
you don’t have to be a science nerd in order to get the game. Think of it as
the Rubik Cube with the addiction rate of Angry Birds! Newbie players have beginner
puzzles to solve that show you the rules and how to optimize your score. Once
you have mastered that level you will be hooked and anxious to twist and turn
the more complex proteins. </span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">So if your mom yells at you for playing video games or you
feel ashamed for using video games to procrastinate just play Foldit then you
can declare you aren’t simply playing video games, you could be curing
Cancer... and hopefully one day Lyme Disease! </span></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">CLICK here to play Foldit: <a href="http://fold.it/portal/" target="_blank">http://fold.it/portal/</a></span></div>
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<div class="MsoNormal" style="margin-left: 0.5in;">
<span style="font-size: x-small;"><span lang="EN" style="font-family: "Comic Sans MS"; line-height: 115%;">Resources:<br /><a href="http://www.youtube.com/watch?v=bTlNNFQxs_A" target="_blank">http://www.youtube.com/watch?v=bTlNNFQxs_A</a></span></span></div>
<div class="MsoNormal" style="margin-left: 0.5in;">
<span style="font-size: x-small;"><span lang="EN" style="font-family: "Comic Sans MS"; line-height: 115%;"><a href="http://fold.it/portal/info/about" target="_blank">http://fold.it/portal/info/about</a></span></span></div>
<div class="MsoNormal" style="margin-left: 0.5in;">
<span style="font-size: x-small;"><span lang="EN" style="font-family: "Comic Sans MS"; line-height: 115%;"><a href="http://edition.cnn.com/interactive/2012/08/tech/gaming.series/research.html" target="_blank">http://edition.cnn.com/interactive/2012/08/tech/gaming.series/research.html</a></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><br /></span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-70378086797050401192013-04-20T03:00:00.000-04:002013-04-21T03:51:40.402-04:00Why I OWN My Disease... and It Doesn’t Own Me!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiezcJ_Kyw0bW8dRif7jnp_v9raFr59oBez1QMRawkNaxItyTvpviTvsU9AgOwrcJPBy6z5cWQO84ZpsXpj3iRhEcfzl0tk546t6qD9_KQ6JF2ATWqecIrvBgsyUtgjjdnlYZYa8sfEnFw/s1600/Take+Charge.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiezcJ_Kyw0bW8dRif7jnp_v9raFr59oBez1QMRawkNaxItyTvpviTvsU9AgOwrcJPBy6z5cWQO84ZpsXpj3iRhEcfzl0tk546t6qD9_KQ6JF2ATWqecIrvBgsyUtgjjdnlYZYa8sfEnFw/s400/Take+Charge.jpg" width="400" /></a></div>
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<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><span id="goog_1155894665"></span><span id="goog_1155894666"></span>Some people may see medical diagnoses as defects of their
bodies or as if something is wrong with them. Diagnoses may be used as labels
and defining factors to dishearten people instead of instructions to help heal
them. <br />When you own your disease or when you own any situation,
it gives you a sense of control over something that may be completely uncontrollable.
‘Owning’ those circumstances allows you to determine how you will let them affect
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<br />
When you are faced with any stressful event in life there is always an attuning
period that one needs to readjust and focus. Being diagnosed with a new medical
condition is exactly the same. You need time to accept what has happened, embrace
the changes you will need to make in your life, and then learn to deal with it
so that it doesn’t own you. I personally don’t think any of those three stages
are ever 100% completed because your life is ever-changing but by striving to
achieve those three things you are ‘OWNing’ your life! Use your new found sense
of ‘owning’ to be self empowering to help heal yourself and evoke positivity
upon others. (‘Owning’ however isn’t arrogance or ignorance!!! Be confident and
courageous, not cocky and conceited!)</span></div>
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I have chosen to ‘OWN’ my life; as diseased, multi-diagnosed, or strayed it may
be from where I imagined it would have taken me. A lot of people find receiving
a diagnosis very comforting, it was for me. If for no other reason, finally
having a name to blame for the misunderstood torture I had endured for so many
years was relieving. Had I not been diagnosed, I don’t even want to imagine
were I would be and I certainly wouldn’t have made the steps forward (as small
as they may sometimes seem) to becoming healthy again.</span><br />
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><br /></span></div>
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disease, don’t let it own you! You don’t have to like how your illness has
impacted your life or be cheery all day but don’t let the disease take over
you! Take control of it, ‘OWN’ it and fight for your own future because you can’t
change the past! <span style="mso-spacerun: yes;"> </span></span><br />
<br /></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-923129862103212342013-03-22T03:47:00.000-04:002013-03-25T00:07:17.845-04:00Diamonds into Coal<span id="goog_425923974"></span><span id="goog_425923975"></span><span id="goog_1929254818"></span><span id="goog_1929254819"></span><span id="goog_323147068"><span id="goog_1519028670"></span><span id="goog_1519028671"></span></span><span id="goog_323147069"></span><span id="goog_452912574"></span><span id="goog_452912575"></span><br />
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<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.encognitive.com/files/images/diamond--a%20diamond%20was%20once%20coal%20under%20intense%20pressure.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="http://www.encognitive.com/files/images/diamond--a%20diamond%20was%20once%20coal%20under%20intense%20pressure.jpg" width="320" /></a></div>
<br />
<span id="goog_1465105643"></span><span id="goog_1465105644"></span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com3tag:blogger.com,1999:blog-2662010753785909368.post-65052287314547306182013-02-27T03:00:00.000-05:002013-03-08T01:22:33.010-05:00Sickness Is Not Prejudice<!--[if gte mso 9]><xml>
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<![endif]--><span lang="EN" style="mso-ansi-language: EN;">Young and stricken with a
bacteria or old and plagued with cancer, sickness looks at everyone equally.
Disease follows no rules and has no boundaries; this was a concept that became
very clear to me not so long ago. </span>
<br />
<br />
<span lang="EN" style="mso-ansi-language: EN;">My grandmother, a survivor of
breast cancer, was once again plagued with cancer about 4 years ago. Before my
grandmother passed, when her health started to rapidly decline, I would visit
her as often as we both could. On one visit, as each of us laid on a couch and
watched a quiet black and white movie with the lights off and talked
intermittently I came to know that sickness treats everyone in similar ways.</span><br />
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span lang="EN" style="mso-ansi-language: EN;">It was
that day that it became clear to me how sickness, of all kinds, has similar
affects on people. People who endure illnesses are not given letters to wear to
show to the world that they are ill. Often times to the normal passer-byer
people’s sicknesses are overlooked. It’s the small things that other sick
people can identify and relate to that really show how you feel.</span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span lang="EN" style="mso-ansi-language: EN;"> Sick
people try so hard not to show their discomfort but there is always a look in
their eyes that I have learned to read on to many people’s faces. Not a look of
sadness or pain, it’s a look of being slightly more fragile. That same look is
often mimicked in people’s movements as their fatigue ridden bodies take a
second longer to stand up or they walk in a slower pace. When people are sick
we often speak in softer tones and listen with ears of new perspective that
appreciates good health all the more. Pain is something else that most people
with illnesses acquire in some form or another. As patients alike count their
handfuls of colored pills we all seem to have small commonalities in our
“sick”uations. </span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span lang="EN" style="mso-ansi-language: EN;">So if
you are a person facing an illness (or if you are healthy) and you have seen
someone that is ill and judged them for their actions or thought to yourself
their situation couldn’t been as bad as yours... think again. Everyone is
fighting their own battle but if you share the enemy of illness you may have
more in common than you think. Rich or poor, black or white; when you are
struck with a bout of sickness remember that no one is immune. </span></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
<span lang="EN" style="mso-ansi-language: EN;">Whether
you are as healthy as a horse or as sick as a dog, remember to take care of yourself.
You only have one life to live, so live it as best you can! </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
</div>
<div class="MsoNormal">
<br /></div>
<br />Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com1tag:blogger.com,1999:blog-2662010753785909368.post-91093627433922921762013-01-25T03:00:00.000-05:002013-02-25T00:18:50.570-05:00Unspoken Heroes<br />
In today's world we are constantly reminded of
love and hate, peace and war, heroes and villians. We are bonbarded with
negativity from every media source about all that's wrong in the world.
However, sometimes with sorrowful hearts or thankful prayers, we are
reminded of the hero's in the world. These are people that put others
lives and well being before themselves. The people that work day in day
out, all hours, to protect and better our lives. Soliders, police
officers, firefighters, teachers, doctors; these are only a few of the
hundreds of thousands of people that deserve our appreciation.<br />
<br />
Then
their are the heroes that are never known. The ones you may not even
call heroes, the ones that are unspoken for. People that are fighting
battles in silence and their only hope is to improve the life of
themselves or others. The number of these heroes is far beyond that of
heroes acknowledged in the media.<br />
<br />
I'm a firm believer that
everyone has a path and a purpose. I also believe that everyone is given
battles to overcome at some point in their lives for certain reasons. People that are
Chronically Ill are fighting for their health, happiness, and overall a
better life. Some battles that must be fought are darker, deeper, and
more difficult especially for people that have been waging against the
same war for years or decades! These people, the ones that have been
turned away, the ones that have been mistreated or not listened to, the
ones that fight and fall only to rise time and time again; these people
are Unspoken Heroes!<br />
<br />
I have had the pleasure of meeting
several of these people and no matter the pain, discomfort, or fatigue
they endure they always flash a smile. They may air feelings of hopelessness and we
all have days that we break but the heroes in all of us always give
reassurances (sometimes unspoken) that "It will get better!" To all the
Unspoken Heroes, thank you for persevering- for yourself, for your friends and
family, and for the people you don't even know you've impacted! <br />
<br />
Together in our weaknesses we are stronger!Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com2tag:blogger.com,1999:blog-2662010753785909368.post-14768808941059783822012-12-31T23:59:00.000-05:002013-02-25T00:20:50.028-05:00BITE ME! .the movement.<!--[if gte mso 9]><xml>
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<span style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: "Comic Sans MS";">
"Bite Me" is a movement that gets rid of negativity and
enforces <br />
optimism in life. </span></div>
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<span style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: "Comic Sans MS";">When you are chronically ill like myself sometimes everyday
is a bad day. Everyone has their bad days where every little thing makes
you want to curse and shout. So "Bite Me" is inspired by my chronically ill
friends suffering from Lyme disease, but is a movement that everyone
should try to embrace.<br />
<br />
Every month I give myself one "Bite Me" day. That day is the day
that <br />
I have designated as my day to just say to the world "Bite Me!"<br />
<br />
Use that one day to express every bad feeling you have. Be mad, be <br />
angry, be grumpy, hell even be b*tchy! Let it all out! Scream in your <br />
car, shout some curse words at the top of your lungs, even punch a <br />
couple pillows. The purpose is to do anything and everything you can <br />
to express and purge yourself of those "I feel like crap!",
"I"m tired <br />
of being sick and tired!" emotions. Then before you go to bed
release <br />
those emotions and allow yourself to be free of them. Then hopefully <br />
the next day you will wake up at least feeling a little less angry and <br />
frustrated.</span></div>
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<span style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Comic Sans MS"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">This approach uses anger in a therapeutic way
and gives you a sense of freedom from expressing and releasing those emotions.
Let’s be real, everyone, and I mean every single person in this world gets
angry, frustrated and harbors some form of negative emotions. Suppressing those
feelings and holding them in only makes them fester and grow. So why not use
negativity to benefit you in a positive way? Use your anger, use your pain and
just force it out all in one day. Then once your emotional reservoir is empty
you can fill it with positive thoughts. <br />
<br />
Sometimes you just have to get angry and fed up with something to push you to
the breaking point, and then when you reflect back you tend to have a new
perspective on the issue and may even see new ways to resolve or healthier ways
to deal with the issue. <br />
<br />
So when you are having a ‘bad day’ take a moment and think to yourself; “Is
this going to be the worst day for me this month?” If that answer is no, let it
go and keep pushing forward. If the answer is yes, if today is the absolute
worst day of the month you can imagine yourself having and everything has just
reached its breaking point then say; “Yes, yes world! Today sucks so just BITE
ME!” </span><br />
<span style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Comic Sans MS"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><br /><br />If you ever feel like your dreams are broken and you've lost your way, just remember all dark clouds have silver linings and the North star is always shining to lead you home.</span>Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com2tag:blogger.com,1999:blog-2662010753785909368.post-68155121462241818712012-05-05T04:00:00.000-04:002013-02-25T00:21:25.870-05:00Time Flies...<!--[if gte mso 9]><xml>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Time passes so slowly, yet so quickly all at the same
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">In the past five months I have found myself in a stagnant
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life-threatening. It just seems to leave a few more missing pieces to the
puzzle. I am still dealing with reoccurring infections (other than Lyme and
co’s) and my Mono has also flared up. I have had an increase in my Lyme and
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">I am also debating searching for another Lyme doctor. My
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am going to have to be bold and go to one of the big guy LLMD’s. I just need to
start playing the lottery in hopes of winning big cash to pay for it! At least
I have my local MD! I firmly believe I wouldn’t be alive today if it weren’t
for him and all he has done for me! </span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-85049615845394710752012-03-16T03:30:00.000-04:002013-02-25T00:22:18.706-05:00"On A Scale of 1 to 10"<!--[if gte mso 9]><xml>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Doctor: "What is your pain on a scale of 1 to 10?"</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Me: "Honestly, 47!"</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Doctor: "Let's not be dramatic."</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Me: ".....That's really an understatement...but I guess on your scale
an 8." </span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><span style="mso-tab-count: 1;"> </span>I hate when people ask me to
rate my pain. Why, you may ask? First of all I think all chronically ill people
that have constant pain hate this question and the vagueness that people
associate with the irrelevant charts they show you with the smiley faces
ranging from smiling to crying. On a doctor's scale of 1 to 10 my ten is not me
crying with a frowning face, my "ten" is me blacking out because I'm
in so much pain. So when people ask me to "rate my pain" I always
answer "On your scale about an 8." I say 8 because to people who have
not experienced pain, and don't deal with it daily they don't understand that
what they may call an 8 or 10 is my 1, my constant. So to them an 8 is pretty
bad. When to me, it’s an everyday, all the time, consistent annoyance. </span></div>
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question?</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Doctor: "So we will go from head to toe. What type of pain are you
having in your head and how bad is it?"</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Me: "Let's see, the front of my forehead feels like someone is hitting
me with a hammer, that's about a 6. Then there is the pain at the base of my
skull that feels like a session of acupuncture that has gone horrible wrong and
the needles are stabbing my brain. I'd say that’s a 7. Oh and the vibrating and
the feeling like my brains been put in a blender, that is about an 8. Then
there is my light sensitivity where everything looks like I’m starring into a
flashlight, then the pressure and tightness in the back of my eyes like someone
is squeezing my eyeballs as if they were stress balls, that’s an 8. Then there
is the phone in my ears that no one will ever answer and the feeling that I’m
scuba diving underwater, that's an 8 too." </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Doctor: "......Umm, okay. Any neck pain?" </span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">To go through the whole body, this process takes about 45 minutes on a good
day. I know because I have literally thought through every part of my body that
hurts and what I would rate it (on a doctor’s scale). Trust me, it takes a
while. It is much faster to think about what doesn't hurt. That list is pretty
short. Finger nails, eyebrows, eyelashes... some day’s that sums up that list. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiJrFEJJchTawzvvWy7qIzhNcrLoI-TjP7y5H_gqqOvqUS86CBG8D-v629qtVoNddL-jiZUzmgwYnzt4Xo8LKyj-KMExsdB14YcTatthFtH9urNOV0AQ4NWVTaTY-MOzst-oOOGq04xx8/s1600/allies+pain+scale.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Another question that I was recently asked related to the 1 to 10 pain
scale is what is my Pain Goal? I had a new nurse that asked me this question and
to her it was very routine but I had never been asked before and had difficulty
answering. Me, either suffering severely from Lyme brain that day or just being
completely oblivious had to ask her what she meant. She replied that if I could
have my pain be lower than what it usually is what would it be? I said, which
to me is an obvious answer, zero! Clearly my pain goal would be to be pain
FREE. This was apparently not the answer she was looking for. She explained to
me again that if my pain could be lower what would be a level I could tolerate.
Well to this my immediate answer was; I am tolerating my pain level now otherwise
I would be screaming and going insane. By this point I was clearly confused by
the question and the nurse was not finding my answer sufficient so after about
a 3 minute conversation of trying to explain to me what the term “Pain Goal”
meant I gave up and said well I guess I five, just because I have no idea what
you mean. So maybe this just isn’t a question for people who deal with chronic
pain or maybe I am just endlessly confused. However my pain GOAL is zero... I
find that logical! </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">A much more realistic pain scale!</span></div>
<div class="MsoNormal">
<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;"></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNKQ4ZSTjcZeG4DxFb3qCkNfLxrqahBKf3TMckA1aDPgMMTtN2mHuE8efvzya5zR1uKOFgYNUslMLA3xlJq1eSzQwsjgUURdOBKZ9m2ehlBHSjl4fPmj2sFTPijJjFEpmmJ76xmill4-A/s1600/allies+pain+scale.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNKQ4ZSTjcZeG4DxFb3qCkNfLxrqahBKf3TMckA1aDPgMMTtN2mHuE8efvzya5zR1uKOFgYNUslMLA3xlJq1eSzQwsjgUURdOBKZ9m2ehlBHSjl4fPmj2sFTPijJjFEpmmJ76xmill4-A/s320/allies+pain+scale.jpg" width="320" /></a></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;"><br /></span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-36345248204904874672012-01-01T00:00:00.000-05:002013-02-25T00:22:50.520-05:00Riding the Dragon<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3PQm54PuK4zNjc_XoMmUErONHAyryW9kFdFto1SQLRkFSzopO70lNk4_T36Sb-QVIo2xGZTPa9LXbow7bgKBj1Yo3QD6hRZM7wnS0KjQZ1B0II7H2wEp5j9IGMLxopF7vSX-akv5eVOE/s1600/Do-What-You-Can-With-What-You-Have.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3PQm54PuK4zNjc_XoMmUErONHAyryW9kFdFto1SQLRkFSzopO70lNk4_T36Sb-QVIo2xGZTPa9LXbow7bgKBj1Yo3QD6hRZM7wnS0KjQZ1B0II7H2wEp5j9IGMLxopF7vSX-akv5eVOE/s320/Do-What-You-Can-With-What-You-Have.jpg" width="240" /></a></div>
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<br /></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">January 1, 2012</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">In the Chinese zodiac the year 2012 is the year of the
Dragon. I hope that isn’t any indication that this year is going to be a
‘monster’ to deal with. However, I believe in the phrase, “what will come, will
come”! We just have to take everything for what it is and move on as best as we
can! <br /><br />May this year bring us all what we need, to each our own wish come true! To better health, happiness, and more love! </span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-73758704127815936582011-12-31T23:59:00.002-05:002013-02-25T00:23:52.595-05:00Another Year of Wisdom<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> <w:UseFELayout/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">With each new year everyone is thinking of goals they would like to accomplish, bad habits they need to quit, and always that added holiday weight they need to lose. And for most people this motivation is heartfelt but short lived. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">I myself am like everyone else. I have always been a person to make list and set goals usually to only avoid or forget them all later. I do it with the best intentions to improve myself in certain aspects. Sometimes the deadlines help ward off procrastination, other times once the timeline has come and gone I find myself disappointed. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">This is especially true when you are chronically ill. When your body and your life are completely unpredictable from one minute to the next it is incredibly hard to set goals and keep them. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Every year I sit down and make a list of the things I would like to achieve in the forth coming year. The list usually in tells things along the lines of; get healthier, focus on and do more school, work on my art, socialize more, and go places. For the average person this probably sounds easy however for me it is completely unobtainable. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Get Healthier; that is something I absolutely want to achieve but that is way too broad of a category to cover in one year. I should make it easy on myself and go for “Research and try a new treatment or work on being able to handle eating more food”. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Focus on School; honestly I should graduate from college this summer. I’ve only acquired a year’s worth of credits. And as much as I love school, I can’t physically go and the college I attend doesn’t offer the classes I need to finish my degree online. So I’m basically screwed there. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Work on My Art; that is probably the most likely to happen. Even though being sick has killed my imagination. Not to mention going without sleep and only feeling like laying in bed all day makes getting up and building canvas and working on art installations a challenge. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Socialize More; more? Haha. I should say just socialize. I’ve got Facebook though and my best friend that lives and hour away so we’ll say I’m rating mediocre on that one. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">And Going Places; obviously I don’t mean the doctor’s office. I would love to be able to take a trip and not to go see a doctor across the country, but at this point I might settle for that. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">The intention of this was not to come off as depressing but simply to prove a point. Even though I’m not checking off goals doesn’t mean I’m not living. And just because I have learned to set my bar of expectations for myself lower doesn’t mean I’ve given up. I still have dreams. It’s all about realization and adaption. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">My world is a very different one than yours and I along with millions of other people who are chronically ill just have to learn to tweak the world to fit us. Our mountains may be a little bit higher but our spirits are also a little bit stronger. So when we win our wars, those hidden dreams and low expectations will be blown out of proportion when we achieve them tenfold. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">So cheers to the New Year! To living it to YOUR fullest and achieving your own goals, as grandiose are minuscule as they may be!</span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-79225682307299121702011-12-30T03:30:00.001-05:002013-02-25T00:25:10.173-05:00Miss Hollywood<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">A lot of people say to me that the fact that I can laugh at my situation makes me strong. That couldn't be farther from the truth. Some days I am a grouch and just need to be left alone and some days I want to have a sob fest for myself. Its just when you have had so much (I just have to say it) SHIT happen to you that I have you either learn to laugh or go mental. Some days I teeter on that balance beam but always try to stay on the humorous side. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">About a week and a half ago I went in to have my old PORT taken out and a new one put in. My mom went with me and we went in about an hour before hand, normal protocol. They did the usual blood work and all that jazz, and I laid in the bed accessorized with my dark sunglasses and mask waiting to go back. Then my nurse pops her head in the door; “The doc isn’t feeling so good, he’s been sick all morning. I think he’s going to call it off.” I was okay with this to be honest because I really wanted to go home and lay down. So the head nurse comes in and tells us that he is going to reschedule so that we can leave in a minute. As soon as she left the hospital room phone range. I answered and it was my surgeon’s receptionist at his office telling me he wanted me to come back two days later for the surgery. Great, so I can leave now? Nope. My nurse popped her head back in the door and said “Wait a minute, he feels better. Think he’s going to do it today.” My mother and I shared a glance and busted out laughing. Only to me would this happen. After they changed their minds two more times the surgeon finally decided he felt ok. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">My mother was not happy about this because she didn’t want me to be exposed to any more germs than possible. I simply laughed and just said “It’s ok as long as he doesn’t puke in one of my open wounds!” Ahh life! I go back to the holding room and one of my favorite anesthesiologist comes over to talk to me and greets me with my hospital acquired nickname; “Miss Hollywood!” Apparently my dark sunglasses don’t give me that hard rocker look but the hollywood glamour look. And I’m not sure if it’s reassuring or sad that everyone in the surgery ward of my hospital knows me by name. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">In the operating room it took the anesthesiologist quite a while to get me to sleep, and to their astonishment or embarrassment they made a joke at which I laughed only for them to realize I was still awake. Priceless moments I tell you! About an hour later I was good to go home. Minus one old PORT, plus one new PORT, plus 14 stitches later and PONGO was welcomed to my right subclavian. And the forever infamous PICC line number 8 was pulled! Scary thing about that was the lumen that wasn’t working had about an inch and a half long clot in it! Apparently that’s what you get when you are as sweet as me...blood as thick as maple syrup! Haha! </span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com1tag:blogger.com,1999:blog-2662010753785909368.post-42043739506767627922011-12-28T03:30:00.001-05:002013-02-25T00:27:22.413-05:00Reflecting and Accepting<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">The past few months have been morphed into one big mess of memories; some better than others but with much reflection I am thankful for all of them. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">August began with the one month anniversary of me living out on my own and me coming to the desperate realization of how poor I was forever destined to be. The month was also marked by me being incredibly sick (what else is new?) and starting back on a heavy duty course of IV antibiotics for Lyme and the pneumonia. This left me in a somewhat delusional state from herxing horrifically, no sleep, and extreme inadequate nutrition. Thanks to Lyme I also missed out on a family beach vacation. Even though the beach is not at all my type of terrain, I don’t like the fact that it was the first and last family vacation that took place with all of our family members. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">September came and I was still sick with the dreaded pneumonia so my IV antibiotic protocol continued. And October quickly followed with the same. I had my birthday and celebrated by coming to my parent’s house and watching cable all day while infusing antibiotics and talking to the guy that came to install my parent’s internet. I must say he found my unique sense of humor comical and was intrigued by my substantial amount of medical knowledge. Halloween came and my third PORT quit working so I was forced to get a PICC line. That was just a bundle of nightmares waiting to bust open. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">November began in a hurried rush with lots of things to do. My doctor finally changed my antibiotics to a medication that I could inhale as a vapor through a nebulizer that began to help the pneumonia. My beloved grandmother that was battling cancer had taken a turn for the worse. So despite my usual mental and physical state of a person in an indisposed insomnious phase I spent as much time at my grandparent’s house as possible. I was shockingly surprised that my insomnia had finally become purposeful because numerous nights I sat awake in my grandmother’s room watching her sleep so that my mother could get some much needed rest. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Thanksgiving was a monumental day as my brother and I cooked our traditional dinner for our entire family. The cooking went well with no flames, smoke, or detectors frantically beeping. The rest of the day was a success as well, but boy oh boy, that night I was burnt toast! There was not one part of my body that was not screaming with some sort of pain. However, I was very proud of myself that I was able to accomplish such a grand task...and survive! </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">My grandmother sadly continued to decline and with the beginning of December she passed away and moved on to become one of heavens finest angels! Our families’ hearts were saddened but filled with numerous joyous memories. With many things to do related to a family member passing, stress was high and I was forcefully pushing my body to function on pure adrenaline and faith! A week of rest and then surgery was on my schedule. In my opinion the surgery to have my old PORT taken out and my new one put in could not come soon enough! The next day my infamous PICC line was pulled (YAY!!!) and two days later was Christmas Eve! After January third, when I go back to my surgeon to get my stitches removed I am here by allowing my body to take a great sigh of relief and function at the lowest state possible in order to stay alive. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Even with all the stress, sickness, pain, and staying in one big perpetual rush I wouldn’t change the way anything took place. I was able to spend quality time with my grandmother and I surprised myself by achieving things I wouldn’t have otherwise attempted. </span><br />
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Sending you all the best of wishes and having faith that you had a Merry Christmas! </span></div>
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Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-18404025558418380832011-11-20T03:30:00.001-05:002013-02-25T00:27:10.685-05:00True meanings...<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">When the holiday season comes around I am always filled with mixed emotions. As a child, before I was sick, I loved the holidays! Thanksgiving was filled with rituals of getting up early to watch the parade on tv and going to my grandmother’s house for a wonderful feast with family. And the day after Thanksgiving was the day to break out the Christmas decor and deck the halls while blasting the Christmas music! Christmas was much of the same with an additional Christmas Eve dinner at my other grandmothers then waking up at 4 am and screaming for my parents to wake up so we could go see our presents. Now, even though I still love the holidays and the sense of joy they bring, they also bring stress. I have not been able to enjoy a holiday dinner for several years and for the past few years the sheer smell of meat sickens me. Now I lay in my dark cave of a room until the dinner is over then I join the party, most often clothed in my newest pair of pajamas. In the end however, thanksgiving is not about the fancy feast. Thanksgiving is about being able to spend time with your family, friends, and love ones while acknowledging the small things in life that usually go unnoticed. I am forever grateful for my family, friends, state of health (be it as poor as it is, it could be worse) and even the small things like my cozy pajamas, my homemade organic applesauce, and my dark sunglasses. So be thankful for whatever you have, as small or grand as it may be!</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">When it comes to things being inserted into your veins, such as PORT’s and PICC lines, I’ve been around the block a time or two... dozen. I first got a PICC line when I was 17 for IV antibiotic infusions. I should have known then when it took the poor vascular technician two hours to attempt to put one in, then fail, that my body didn’t like to cooperate with them.</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">On Halloween my 3<sup>rd</sup> PORT started giving me major issues. It had been acting very finicky for a week or so, but by that Monday it had completely stopped working. After attempting to fix it three times throughout the next week with drain-o for human veins, my surgeon gave up. So Wednesday the 2<sup>nd</sup> I had PICC line #8 put in. Luckily I got the same guy that had put my last PICC in so he knew I was trouble. After two failed attempts he finally got one in and working. Then the next day it quit. I know my blood is thicker than maple syrup and all my previous PICC’s have short life spans but this was ridiculous. Back to the hospital I went. When I got there they told me they knew I would be back because the chest x-ray showed that the PICC line was curled up at the end, but the stupid radiologist that read the x-ray said it was fine and they have to listen to him. Idiot radiologist! I really have a grudge against most radiologists I know. They did another x-ray and fixed it. Then the next day it messed up again. UGH! I was really annoyed by this point. So they assumed it was a blood clot and sent me to have an ultrasound of my arm. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">The guy did his thing, made my arm hurt like crazy then said “I didn’t see anything but I think I cleared it up for you. You can leave now.” I was confused. He didn’t see anything but he fixed it? I went and tried to flush the line to see if it would work and I got it to work. This was crazy! Went home did my nightly infusions, got up the next morning to do my morning infusions and bam... the dang thing had quit again! I knew it wasn’t me, so I came to the conclusion that this was the PICC line from Hell! I messed with it for a while and got it to where I could flush one of the lumens so I did my infusions anyway. Throughout my infusions my arm burnt like gasoline was being poured into my veins and started to swell. I kept it working even though it hurt. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">My nurse came a few days later and I told her and she said “You and me both know it isn’t supposed to burn and make your arm swell.” So I told her I thought the line was infiltrating some and she agreed. Thank goodness it wasn’t just me losing my mind. Even though it’s the most annoying PICC I have ever had (well except the one that would randomly ooze blood out of the insertion site all the way down my arm) I have to admit I am impressed it has stayed alive this long. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Now I am trying to overcome the pneumonia so I can have PORT #3 removed and PORT #4 put in. Since I become attached to these things, in a literal sense, I usually name them. PORT #3 was Piper, therefore request of names for #4 will now be accepted. I’m thinking Paco or Charlie.We'll see how it goes. Hopefully I will be welcoming PORT #4 sooner rather than later!</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">When I was 17 I started seeing a neurologist due to some of my symptoms. I believe it was a year after I began seeing him that he ordered an MRI of my head and neck after I had severe neck pain. It was then that he discovered that I had Chiari Malformation. He explained that it is a birth defect of the brain stem and that it could explain several of my symptoms. Baffled as I was to have yet another diagnoses added to my list I was somewhat relieved to have perhaps another answer to my problems. More answers more options to fix them, right? My mother and I were both however pissed off (to say the least) that no doctor before had discovered this in one of the previous 12 or more MRI’s I had had. My neurologist told us to seek out the help of a specialist, so we did. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Back to New York, this time for a duo doctor visit, LLMD and Chiari Specialist. Previous to the Chiari appointment I had rigorous MRI’s and CT scans and one kind of scan that I have forgotten the name of but it took very realistic pictures of my skull and spine. It was very cool; I still wish I was able to have kept those pictures. We saw two specialists; the brain surgeon and the neurologist guy. The surgeon told me that Chiari was causing 90% of my symptoms and that surgery could fix them all. 30 minutes later the neurologist came in and said that the Chiari could be causing some of my symptoms but that he couldn’t be sure. He said that surgery could be somewhat beneficial or make the symptoms worse. So that visit was completely contradictory. I was more confused when I left than before I went in! So I basically put the Chiari thing on the back burner until a year later. Then I found a new Chiari specialist that I heard great things about, so I gave him a chance. Plus he was in Colorado, and even though I was going to spend my entire life savings on this doctor’s trip I was completely stoked that it was in Colorado! And this doctor was awesome, I loved him! He said that a large portion of my symptoms could be from the Chiari and that he felt that surgery would be beneficial. He correctly identified that I had syrinxes in my spine and that I also had spina-bifida and could possibly have tethered cord syndrome. However during his visit I also saw a nutritionist and with all of my digestion/ stomach issues the doctor said that I would have to be able to consume a certain amount of calories per day and keep them down before he would ok the surgery.</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;"> So I am still trying to fix my gut issues first. Even though I am now experiencing new Chiari symptoms and am leaning more towards having the surgery I have to get my gut in working order first. So just like my Lyme journey, the Chiari journey continues on as well. Just another adventurous chapter to add to my life book, that will hopefully one day in with a ‘happily ever after’ ending.... and not a huge cliff hanger. Dun dun dun!!!</span></div>
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Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-41771115415898931482011-11-12T03:30:00.000-05:002013-02-25T00:28:43.665-05:00My (Lyme) Story<div align="center" class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-align: center; text-autospace: none;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">...the short version</span></b></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">In September of 1998 my mother noticed that I was not acting like my vivacious self. I was the type of kid that ran outside the minute I got home from school and played in the woods until I was forced to go inside. I never noticed myself, until my mother told me many years later, that I had begun being much more fatigued and experiencing flu like symptoms. I injured my right knee in gym class one day and from then on I have experienced severe knee problems. That was just the beginning. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">I went through doctors telling me I had Juvenile Rheumatoid Arthritis, Lupus, Fibromyalgia, to being crazy and having countless other diseases all to go through the treatments for each aliment then when it didn’t work the doctors would simply say ‘well I suppose it isn’t that’. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">After traveling up and down the entire east coast seeing doctors perched on ivory towers for 8 years, spending thousands upon thousands of dollars I finally found a doctor that was willing to give me a chance. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">I vividly remember my first visit with him. I went back into the exam room with a white board on the wall. He told me to tell him every symptom I had as he wrote it on the board. Once he was finished he stepped back to look at the cluttered board and said “You can’t have all of these.” My grandmother that was accompanying me on the visit said “But she DOES!” Then my doctor said words that he has surely lived up to over the past 5 years; “I won’t be able to figure this out on my own, but between me and God I will find out what is wrong with you”. And he did! Not a month later he CORRECTLY clinically diagnosed me with Late Stage Lyme Disease. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Oral antibiotics were my first route of treatment. I did those for about 6 months until my stomach completely shut down and I was no longer able to keep anything down, pills or food. This was the time I met several people my age on Facebook that also had Lyme. They were genuinely concerned about my declining and encouraged me to see an LLMD. Then the next summer, after being off of Lyme treatment and not eating any solid food for months I was forced to be put in the hospital due to severe malnutrition and dehydration. I ended up getting a feeding tube to give me long term nutrition. Three surgeries, one J-tube, one PICC line, and 21 days later I got to leave the hospital. It was certainly not the way I had planned to spend my summer. I guess blessings do come in disguise though because due to the infections I obtained during my first surgery I was put on high dose IV antibiotics, which was killing two birds with one stone, the infection and the Lyme bacteria. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">After convincing my parents that seeing an LLMD was the right thing to do and finding a Lyme doctor I could afford, my local doctor agreed this would be the best next step. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Off to New York I went. The trip itself was a treacherous two day drive but even in my state of crappiness I couldn’t help but to be excited to see New York for the first time. As I lay on top of pillows and comforters in the floor of our car I looked out the window up at the top of skyscrapers. The first appointment with my LLMD was not that encouraging, although I did find relief in the fact that he was convinced I had Lyme. He told me it was essential to eat food even though it caused me discomfort. Easy for him to say I thought. He ordered blood test through Igenex, which came back confirming that I indeed did have Lyme, plus some nasty co-infections to go with it. A few months later I got Mono and became even more ill. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Now...3 PORT’s, 8 PICC lines, and 4 years later I am still continuing my IV antibiotic treatments along with IVIG treatment. I am unfortunately no longer seeing my LLMD simply because I became too complex for him to handle. In these past 5 years since I was diagnosed with Lyme I have also been diagnosed with POTs, tachybrady-cardia, Gastroparesis, Chiari 1 Malformation. Hashimoto’s Thyroid disorder, polymyositis, dermatomyositis... oh crap, there’s other stuff I just can’t remember, I guess that shows that memory loss should be added to the list. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Right now I'm kind of at another dead end as far as finding a new treatment plan that I can withstand and afford. Hoping another open door will be presented to me sometime soon. As of now I'm doing my best to get ride of all my secondary infections (pneumonia, kidney infections) and treating 2 of my new diagnoses that can benefit my Lyme as well. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">So my Lyme journey continues on and although there may be deep valleys to travel through I will journey on to find health and greater happiness in life. </span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-78239038483218927172011-11-05T03:30:00.001-04:002013-02-25T00:29:08.862-05:00Still Alive<div align="center" class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-pagination: none; text-align: center; text-autospace: none;">
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">When I first began creating this blog I wondered how long it would be before my inconsistency kicked in. Obviously it didn’t take too long; however I feel I have the right to blame some of my wavering procrastination on my Chronic Illness. After all, everyone who has ever been sick knows that feeling like death warmed over is an automatic excuse to neglect the living world and rekindle your friendship with your bed and television. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Being sick for prolonged periods of time certainly takes its toll on you in several ways. The frivolous luxuries such as going out with friends are retired and you become very aware of what is truly important. Then you separate what is truly important (family, friends, health) from what is absolutely necessary in order to survive day by day. Some days the to do list is as simple as; take medicine, drink water, pee (if a must). Procrastination becomes your worthy companion that you become dependent on, and that is perfectly ok with you. So here’s to surviving while fighting for a healthier self... and attempting to revive my deteriorating blog in the process! </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Keep wishing for those stars, and one day one will fall just to make your wish come true. </span></div>
Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-8573008324165812011-08-13T03:00:00.006-04:002013-02-25T00:29:39.540-05:00The Show Must Go On!<div align="center" class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-align: center; text-autospace: none;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;"></span></b><b><span style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Act: 1 Scene: Infinity</span></b></div>
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When it comes to playing the role of a lymie the curtain is never called. The show is never over because this is no show, this is life. Living with Lyme is a 24/7 job, definitely not a part time gig. Living with Lyme does involve acting sometimes, for me at least. Before I was correctly diagnosed doctor after doctor after psychologist told me straight to my face I was faking being sick for the attention and that I needed to stop doing “this" to my parents. Well obviously they were all idiots. However this caused me to become a very introverted person and I forced myself not to show how bad I felt or how much pain I was in because I didn't want my parents to be mad at me or think I was making myself sick. </span></div>
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<span style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Still today I have taught myself to deal with my pain so that I don't cry (after all crying only makes you hurt worse) and I put on a smile and silently grimace through the pain when I have to act like a living human being. Sometimes the show just has to go on! This isn't always the best thing to do because pushing yourself usually leads to a huge crash and burn, in my experience at least. </span></div>
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<span style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">In my opinion all chronically ill people are award winning actors! The fact that we get up and take a shower some days without a huge dramatic sobbing and screaming in anguish scene is us acting our asses off. And to think that some lymie’s still keep full time jobs and take care of their families is amazing! Other people may not see how hard it is and appreciate our small accomplishments, but for us every mile stone is a big deal! We may complain from time to time but trust me, and I think all my other lymie’s would agree, if all we do is complain sometimes about how crappy we feel that is a huge accomplishment of not letting the disease and pain take over us! If we were perfectly honest about how we truly felt all the time we would be running around screaming bloody murder, then we really would get locked up in the crazy house. </span></div>
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<span style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">So to all my chronically ill actors and actresses, take a bow because you deserve a standing ovation! Keep fighting your fight because one day the curtain will draw to a close and the lights will be shining down on you to reward you for your great performances! You are all true stars living in the lyme light. <br />
<b style="mso-bidi-font-weight: normal;"><br clear="all" style="mso-special-character: line-break; page-break-before: always;" /> </b></span>Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-33919109894038140442011-08-03T03:00:00.001-04:002013-02-25T00:30:26.102-05:00Ode to Friends: Friends Through Sickness and Health<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> <w:UseFELayout/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><b>Part 2</b> </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">Younger people with a chronic illness often lose a lot of their friends after becoming ill. When you are no longer able to keep up with your friends at the same pace and take part in the things they do you begin to see less and less of each other. This is hard for a young person who is sick. Not only are we dealing with the physical and emotional stress of being ill but we also have to deal with our routines and environments rapidly changing. For those that become sick to the point that they are no longer able to go to school or work, they lose all social contact with the outside world. And I’m sure the friends do not intentionally neglect or ignore you, but they have busy lives and have to carry on. This is just life. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">So most often we turn to social networking to find new friends. I think this is a great thing because we are able to find people that are dealing with the same disease and issues through support groups. I highly recommend this! Some of the people I have met online that have Lyme Disease are now some of my closest friends. When you are young and going through a disease it is very reassuring to have a friend that is going through the same thing, it kind of reminds you that it’s not just you that’s this way. One possible bad thing about completely converting to social networking is that you tend to become emotionally invested in your computer and the people that live in it. (Trust me I’m not saying that’s entirely bad, nor do I mean that in a hypocritical way because that statement includes me.) I think it is important to get out and stay in touch with your ‘normal healthy’ friends as much as possible to give you a since of normalcy and stability. But for those that can’t get out of bed and are house bound the computer becomes your world.</span><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"> </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">And when people begin to get better and are able to socialize more I think it is important to remember that you are different than your ‘normal’ friends. They haven’t been through an illness and they may not understand how to cope with that. So give them some time to get readjusted to the idea of you being back to normal. I think when we get so close to our Lymie friends we tend to forget that most people don’t understand what we mean when we talk backwards or blurt out a list of supplements we are on or how we can’t tell if we are herxing or dying. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">So don’t completely give up on your ‘normal’ friends if you kind of part your ways once you get sick, there are a few good ones out there. And if your friends have stuck with you through thick and thin, sickness and health, keep them around because they are few and far between. And if your friends have parted ways with you, don't worry. It may hurt for a while but they obviously weren't worth the effort. It's important for all friendships to be two-sided and not one. Everyone needs emotional support from friends at some point, so if your friends aren't willing to give you that in the time that you need it most (when you are sick) then heck with them. Don't let their negativity drain you, just move on to better and brighter friendships. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">To new and old friendships, may they always keep you bright and happy hearted and always reaching for the stars. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><b> </b></span><b><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;"> </span></b><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"></span>Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0tag:blogger.com,1999:blog-2662010753785909368.post-23901455593491835832011-08-01T00:00:00.003-04:002013-02-25T00:30:44.579-05:00Ode to a Best Friend: Friends Through Thick and Thin<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> <w:UseFELayout/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">In a lifetime one meets and forms bonds with quite an eclectic group of people. You may even be lucky enough to have several best friends throughout many years. But for some, friends are somewhat disposable as we grow older. I on the other hand have been abundantly blessed with a best friend that the word amazing is just not sufficient enough for. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">We met in the 3<sup>rd</sup> grade through another friend one day after school and quickly clicked. Ironically enough we actually lived right down the street from one another. Through the years we have become more than friends, we are like family. Even though we didn’t always go to the same school, or live in the same town we always stayed friends. Connected at the somewhat sappy heart and overly witty sarcastic mind, we just couldn’t be separated. Today, over 12 years later we are still two peas in a pod. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">When it comes to true friends no disagreement, distance, or length of time will weather a real friendship. My best friend is a testament to all of that. We met just after I became sick, and through all the years of doctors and me being sick, she was always there. I think it is safe to say she is the only person that would come visit you in the hospital on your birthday, throw you a surprise party in your hospital room, and make you a play-doh cupcake because you can’t eat real cake! That’s a true friend right there! </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">She has an amazing understanding of my situation and doesn’t judge or put me down because I can’t do all the things that other people my age can. Plus the fact that she is willing to drive an hour to come visit me, sometimes to just sit and talk to me says just how great she is. Most ‘friends’ wouldn’t go through the hassle of lugging a wheelchair in and out of a car and pushing me through a store, but her, she does it without saying a word. She is the one person that gets me being sick and doesn’t make me feel bad. She knows the sickness but she also knows me and never forgets that those are two different things! To say thank you for her friendship would never be enough. </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12pt; line-height: 115%;">So when you are having a down day in the dark always look toward your friends to lend you a shining star! </span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";">Living with an Invisible Illness, such as Lyme Disease or Chiari, may sometimes seem like living in a world without light. Most people don’t see the illness or how it affects you, they don’t see the darkness that fills you. They only see the physical you, the you that is defined as a human that is equivalent to everyone else in the world. Only the Invisibly Ill knows how difficult it is to live a life in the dark. We, the invisibles all have a commonality, we all know what it’s like to lose our life and all sense of normalcy to a disease while being pushed into a life of suffering that requires surviving from day to day. Along with battling a disease we have to deal with doctors ignoring us or dismissing our symptoms for fathoms of our imaginations for attention and lack of support from friends and family members. Not only do we have to fight for our health we also have to fight for our doctors to believe us, for the doctors that do treat us to not be scrutinized by the government, for our insurance companies to pay for our treatments, and for our family and friends to help support us financially and emotionally. It’s all a complicated and sometimes depressing process. However we are not alone in this battle through the darkness. The Invisible Illness community has grown quite a lot over the past few years with social networking. Now we the invisibles are more easily able to find people that are struggling with similar situations that we can relate to, vent with, and learn new ways to cope with our diseases. This new found source of community is also a great assistance in learning more from others about our own disease’s and other ways of treatment and healing that we may have not formerly be familiar with.</span></div>
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<span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS";"><span style="mso-spacerun: yes;"></span>So no matter how dark the darkness is or how brutal the battle; there is always a light to shine within us that when we come together we will be surrounded by the light of power and healing. </span></div>
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</span><span lang="EN" style="font-family: "Comic Sans MS"; font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN; mso-bidi-font-family: "Comic Sans MS"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><br clear="all" style="mso-special-character: line-break; page-break-before: always;" /> </span>Fireflyhttp://www.blogger.com/profile/11449307867313173255noreply@blogger.com0