tag:blogger.com,1999:blog-25283751301169358002024-02-19T07:23:58.293-08:00Generation Hope BlogA blog for young adults living (and we mean LIVING!) with pulmonary hypertension.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.comBlogger84125tag:blogger.com,1999:blog-2528375130116935800.post-66258453362474916212015-11-07T19:44:00.001-08:002015-11-07T19:47:19.562-08:00PH Awareness 2015<div class="MsoNormal">
By Kiara Tatum</div>
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I can’t believe another year has passed by, and PH Awareness
Month is here once again. During
the month of November, there are many events, fundraisers, support group
meetings, advocacy action, and other activities to spread PH awareness. This is also a great time for young adults
diagnosed with PH to spread as much PH awareness as we can during the
month. I know it can be difficult
getting involved in attending events or hosting a fundraiser, but I’m going to
share some great ways to spread PH awareness using social media. <o:p></o:p></div>
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One social media event that goes on until November 30 is #Heart2CurePH. It's simply printing the "Please Co-Sponsor H.R. 3520 sign" and taking a selfie or a usie with friends and family and posting it on your Facebook or Twitter page with the #Heart2CurePH. Don't forget to post on your Members of Congress pages as well to see if they have the #Heart2CurePH by sponsoring the Pulmonary Hypertension Diagnosis and Research Act. For more information go to <a href="https://www.facebook.com/events/1033194596714067/" target="_blank">Heart2CurePH Photo Campaign</a> on Facebook. </div>
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#Heart2CurePH Campaign is part of the 2015 National PH Advocacy Day on Thursday, November 19. There are three ways to get involved including the #Heart2CurePH, giving your Members of Congress a call, and visiting your local legislature office. Find out more information of <a href="http://www.phassociation.org/AwarenessMonth/NationalAdvocacyDay" target="_blank">Periwinkle For A Cure: National Advocacy Day</a> here. We are coloring the world periwinkle this month. So change your profile pics and cover pages on Facebook to PH Awareness themes. Can find them on the <a href="https://www.facebook.com/PulmonaryHypertensionAssociation" target="_blank">Pulmonary Hypertension Association</a> Facebook page.</div>
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Now ladies, and the fellas too, this one is a good one. Get out your periwinkle color nail polish and paint your nails. It's time for the #ManiUpForACure Campaign. Take a pic of your nails and post on social media with the #ManiUpForACure. No periwinkle nail polish, no problem. When you donate $20 or more to <a href="http://www.phaware.global/donate" target="_blank">PHAware</a>, you will be sent a bottle of nail polish, so that you can participate in this campaign.</div>
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Now another idea which is just so inspiring and amazing, I can't wait to do create mine, is record a note card story. It'll allow you to share your PH journey to others on social media. You can post on YouTube Channel and/or your Facebook Page. It's a great way to share your story and spread PH awareness. Check out Shannon O'donnell's PH story.</div>
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These are just a few ways you can get involved in spreading PH Awareness to family, friends, and your community. Do one, two or try them all. For more details and other ideas you can always visit <a href="http://www.phassociation.org/AwarenessMonth" target="_blank">PH Association Awareness page</a>. Do something this month to spread PH Awareness!</div>
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Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-72591925755222253702015-08-18T16:36:00.001-07:002015-08-18T16:46:45.307-07:00Walk Across America Continues...Pacing Parson<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh4twz0NNzo_iOHFdi9XGciE1xGsWRGZgmD2ZsK7bsmNsML4GV45Ry9riTYeG7g8-QwOvqCmmCWWD4VxDRo3i3lWNFchVMi2_kAU2-SuKRHsDxwgeSyD6DL9xv0pbUXxjeBQaGi0lMqq8/s1600/pacing+parson+pic.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="152" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh4twz0NNzo_iOHFdi9XGciE1xGsWRGZgmD2ZsK7bsmNsML4GV45Ry9riTYeG7g8-QwOvqCmmCWWD4VxDRo3i3lWNFchVMi2_kAU2-SuKRHsDxwgeSyD6DL9xv0pbUXxjeBQaGi0lMqq8/s320/pacing+parson+pic.jpg" width="320" /></a></div>
Have you heard the story of Don Stevenson aka Pacing Parson. Don Stevenson, who is 79 years old retired minister and former U.S. Marine, is walking across America to raise awareness and money for Pulmonary Hypertension (PHA). Stevenson walks 25-30 miles each day, from Auburn, Washington to Silver Spring, Maryland. He takes Sundays off to rest. <br />
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Stevenson was compelled to support PHA after visiting Betty Mayfield, a fellow church member in the hospital before she died of this disease. This walk honors Betty Mayfield, along with Dorothy Fitch, a close friend who is struggling with PH, and a 14-year-old Cullen Steele, a local (Kent, Wash.) PH patient who recently underwent a heart and lung transplant. <br />
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Stevenson's walk is one of PHA's Team O2 breathe events, where communities and individuals raise money for PHA. PHA is chronicling Stevenson's journey on social media and inviting people to walk with him and capture the experience via photos and short video clips. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTG3f_Y9ehof_qpyLA-rZS_gDM51okh9DZr-s-g_alSsw7uInGtA83nV6JHJfU7ZtIed8yqdT5j7s80gRjoj0pCZLRXaUKyvWgi3voDzEuA__gIm4kDJ18wAnNoJkiQ-mecgRAhuZTIo8/s1600/DON+STEVENSON.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTG3f_Y9ehof_qpyLA-rZS_gDM51okh9DZr-s-g_alSsw7uInGtA83nV6JHJfU7ZtIed8yqdT5j7s80gRjoj0pCZLRXaUKyvWgi3voDzEuA__gIm4kDJ18wAnNoJkiQ-mecgRAhuZTIo8/s200/DON+STEVENSON.JPG" width="134" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Don Stevenson</td></tr>
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It's time for Gen Hope to get behind Pacing Parson and help raise funds for PHA. Go to <a href="http://www.o2breathe.org/faf/donorReg/donorPledge.asp?ievent=1142194&lis=1&kntae1142194=4A4B3088C55E4485AB26905F59A965C4&supId=425442351" target="_blank">Generation Hope's Fundraising Page</a> and make a donation. Generation Hope is trying to reach a goal of $1,000. A contribution of $5 or more can go a long way. It's the goal to reach this amount by Mid-September when Stevenson will reach PHA's Maryland headquarters. Let's join the cause!!! <br />
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Learn more about #PacingParsonPHA at <a href="http://www.phassociation.org/PacingParson" target="_blank">The Pacing Parson Walks Across America for PHA</a>Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-37903797326791399062015-05-04T12:49:00.000-07:002015-05-04T12:49:30.959-07:00Confessions of a Once Reluctant Fundraiser<div class="MsoNormalCxSpFirst" style="margin-bottom: 0.0001pt; text-align: justify;">
<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">Reprint from PathLight Winter 2015</span></div>
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<tr><td class="tr-caption" style="text-align: center;">Colleen with a friend at her <br />"Shake It For PH" Zumbathon</td></tr>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">There was a time when I didn’t like fundraising. Don’t get me
wrong, I’d gladly throw some money behind a cause or person I supported, but
actually <i>doing </i>fundraising for pulmonary hypertension, as in, create an
event, solicit friends and family, and pull it all off?<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">No thanks.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">My reasons were pretty clear at the time. I felt that if I were to
fundraise for the cause, I was somehow fundraising for myself. And I wasn’t comfortable
with that at all. To do so would mean both admitting how sick I was and asking
for help, and I didn’t like the thought of either. These feelings guided me for
a while. However, as I got more involved in the cause, the more I came to
realize just how crucial the funding part was. My stance has long been this: <i>“If
I have the right to hope fora cure, I have to take an active part in doing
things that get us there.”<o:p></o:p></i></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">Well, what gets us to a cure is research dollars (and advocacy!).
But someone has to provide those dollars, and I began to see that the push for
that had to be led by someone like me — the one whose hopes rested on the cure
those funds could bring. Maybe that’s you, too.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">So, I tentatively dipped my toe into fundraising. I’m a part of PHA’s Generation Hope, PHA’s
group for patients in their late teens, 20s and 30s, and a few of us banded
together to help raise unity funds for the “Path to a Cure” climb, where two
doctors and a physician assistant were climbing Mt. Kilimanjaro to raise money and
awareness for PH.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">That went pretty well! So then I started thinking about an event.
I decided I needed to have a shift in perspective. Instead of thinking about
asking for money, I decided to invite people to a party. A good party is something
I can handle! So, I created the first-ever Zumbathon for the cause, dubbing it,
“Shake It for PH.” That was so much fun I did it again a second year.<o:p></o:p></span></div>
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In 2013 a new opportunity arose. Team PHenomenal Hope was preparing for Race
Across </span><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">America and two patients, Diane Ramirez and Janet </span>Mabe<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">, committed
to walking a combined 100 miles to raise awareness and unity funds for the
event, a goal which they actually far surpassed! Their actions inspired me to
do my own athletic event. A friend and I participated in a Warrior Dash and
raised sponsorships through that.</span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">All in all, I’ve raised almost $14,000 for PHA. Every event was
fun, and I’d do them all again. Not so bad for someone who once publicly
declared that fundraising was not for her!<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">Now I have my sights set on something bigger. This year, PHA
launched the PH Care Centers, an initiative to establish a program for
accreditation of centers with special expertise in PH, and to raise the overall
quality of care and outcomes in patients. With this initiative comes the goal
of a patient registry. I believe that achieving this goal could revolutionize
how medical providers and researchers approach PH, but I also know it will take
a very strong financial platform to make it happen.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 12pt;">On May 1, 2015, Hartford, Conn., is going to host a fundraiser for
the registry unlike any you’ve seen before. We are going to throw one big party
(you see my theme here), and take 254 people to see Jay Leno live. I’m working
with an amazing team, and I do believe we can pull off something great. Stay
tuned! And be it big or small, be thinking about how you, too, can get in on
the cause — a cure for pulmonary hypertension. As I’ve learned from starting
small and slowly growing my fundraising efforts, every little bit truly does
help. <o:p></o:p></span></div>
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<i><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">By
Colleen Brunetti, PH patient; Member, PHA Board of Trustees; Generation Hope
Advisory Board Member<o:p></o:p></span></i></div>
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<i><span style="font-family: 'Times New Roman', serif; font-size: 12pt;">If you
would like to join Colleen and jump into the world of special event
fundraising, contact PHA’s special events team at Events@PHAssociation.org or
301-565-3004 x742.</span></i></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-45048035435757112212015-03-06T13:26:00.003-08:002015-03-06T13:26:52.919-08:00A PH Story Continued<h3>
Part 2 by Eye Shaa Malik</h3>
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<a href="http://phagenerationhope.blogspot.com/2015/02/a-ph-story_27.html" target="_blank">A PH Story Part I</a></div>
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My story continues...</div>
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I normally visit my doc once in two weeks for regular checkup but
my last worst hospitalization was on 6 April 2014. It left a mark on my mind
and it brings tears in my eyes when I recall that day. I've got severe heart
arrest at 3 am I was at hostel nobody was there to take me to hospital I was
extremely breathless with hell pain in my heart. I was brought to heart center
at 8 am next morning (that added to the severity of stretch of heart hole's
muscles with insufficient O2 supply) by my roomie, I am thankful to God and
then to her for saving my life. I was swooned afterwards and undergoing various
treatments like O2, nebulization and injections repeatedly...<o:p></o:p></div>
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I don't know what happened then & when I revived my senses I
found myself half-dead still ongoing spate of treatments. My family arrived
near 4 pm I evoked my will-power and didn't heed to anyone , my doc said you
are not in condition to go ,I insisted but I got breathless again and was
brought to another hospital the same evening .... It was a severe jerk that I
wasn't able to get up for approx. a 'month' but thanks to some good
medical attention & I took my rehab seriously, brought myself to the level
of fitness... It was spring and undoubtedly in these 12 years this
"Crop-cutting" season aggravates my symptoms. During this turmoil
I've written a poem "My scattered breath" that justify how my
condition fully cox when you can't breathe nothing else matters!<o:p></o:p></div>
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“My Scattered Breath"<o:p></o:p></div>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Night prevails to bring
some rest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Even the birds flew to
their nest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
To sleep soundly is my quest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
But being valetudinarian I am
arrest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Spring's brutal to me ever,
yet!<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Can't blame the crops that
harvest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Once again I'll have to pass
it like a test...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Cox having
"PH" is not a jest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Lots of fears, if
it’s last spring lest!<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Dear lord! Waiting
for you to manifest...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
The eternal
heal that reveal the zest!<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
My focus is to keep myself psychologically healthy. My parents
have always told me that you are "RARE" not "SPECIAL" so my
"expectation level" for care and affection from others is very low
.......I cordially thanks my caregivers and try to return something to them (that
can be a smile :)). I think when we are ill we can waste too much energy being
mad or being glad about how people are caring for us, when we should be really
there caring for others, our illness doesn't exempt from reaching out in fact, I
think we are more accountable because we can understand journey better than
those who have not yet taken it. I feel like now that I have PH I am aware of
every my single breath to thank. Never in my entire life anyone
sympathized me because I never painted a sorry picture of mine and I feel that’s
my success . Everyone and I mean each and everyone says this " You don't
look like a patient " until unless I tell them that there is something
wrong inside , my nails and lips give them a ill bit of clue rarely but I often
hide it with some lip and nail colors..</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCECE3oPot4Q2HH1mvEXswTRRCIupbNdKWmTKSiYEOYJ0y7GJfe0E5txWCAQTxyUHzqBHwtkltH6ao4wCLAdP91mE4uDYgyo3zzmENp9IhrkfkDwGfkjXYmuCS5q19BHVgxqFU_erhjPU/s1600/pulmonary_hypertension-920780.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCECE3oPot4Q2HH1mvEXswTRRCIupbNdKWmTKSiYEOYJ0y7GJfe0E5txWCAQTxyUHzqBHwtkltH6ao4wCLAdP91mE4uDYgyo3zzmENp9IhrkfkDwGfkjXYmuCS5q19BHVgxqFU_erhjPU/s1600/pulmonary_hypertension-920780.jpg" height="98" width="320" /></a></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
One thing for newly diagnosed patients with PH or any other
chronic disease... Look! You are a higher, plight till last breathe, yes you
are bearing up, but who isn't? In one way or other everyone is the part of any struggle.
Never ever give up & keep marching forward. Everyone has to go one day,
take your medication & rehab-process seriously, smile for your love ones
and get out of dismal outlook and prove the world that you are a "WARRIOR”.
Once you adopt things turn easy for you, HAVE A COMPLETE FAITH IN GOD. Keep your
mind spiritually positive & patiently wait HE is the best healer, you all
definitely be rewarded for this pain. He is aware of your struggle and the
midnight sky and the silent stars have been witness of your devotion to freedom
and of your heroism.</div>
</div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com1tag:blogger.com,1999:blog-2528375130116935800.post-71875572718814967362015-02-27T14:40:00.001-08:002015-02-27T14:40:42.837-08:00A PH Story<h3>
Part I</h3>
<br />
<h3>
By Eye Shaa Malik</h3>
<br />
Everyone has a story. Here's mine...<br />
<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<b>How long you have been with
PH? What medication are you on?</b><o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3Q1gHHcdTqXutdmQCl_ko5BxhoZv3KoaCmqvoUvId7yPG2TIPbHMViat9wo1SfAjZY5OxkahYqpnuTCyn0tWhsU7lg-obZopfWwYBUEV5ZS3pfgGSAwGg8kLv1tJo5yUhIKm7NhLVbTk/s1600/snowy_day_11_4_2014.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3Q1gHHcdTqXutdmQCl_ko5BxhoZv3KoaCmqvoUvId7yPG2TIPbHMViat9wo1SfAjZY5OxkahYqpnuTCyn0tWhsU7lg-obZopfWwYBUEV5ZS3pfgGSAwGg8kLv1tJo5yUhIKm7NhLVbTk/s1600/snowy_day_11_4_2014.jpg" height="200" width="148" /></a></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
It’s been more than a decade, approx. 12 years, I am 21 and I was
diagnosed with ''severe'' pulmonary hypertension in June 2003 due to large VSD
(ventricular septum defect) with bidirectional shunt after angiography.
Prior to that I have had a "small" congenital VSD (a small hole in
heart) but when I was 3 it was “filled” naturally, and I was alright without
“surgery”. I lived a healthy life until I was 9.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I found myself breathless, exhausted and fatigued even after little
exertion. We thought it was asthma and went to many physicians and ENT
specialists. Finally a doctor noticed my hands were blue and questioned if I
had any heart problems in past. He suggested going back to my cardiologist as
he thought there might be something wrong with my heart.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
My cardiologist asked for an immediate angiography after which there
was a meeting of various cardiologist and my family. They (doctors) predicted my longevity to be 2.5
years. The repeated what was written on
my reports, '' ITS TOO LATE, NO ELEMENT OF RECOVERY COULD BE FOUND.'' This very
line literally reshaped the perception of my entire life.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I went to every possible place where the best doctors were available,
but because there were and are no medications approved for children, I have
been continually referred. I have
undergone various treatments, trials & experiments. Finally they found
a medication regimen that worked, I was put on tracleer (Boonton), sildenafil
(penegra), warfarin and lesoride (my current treatment, as well). While they said
I would never survive without oxygen, I only use it at night. <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
My life was forever changed after diagnosis. Since that day,
I have always been treated as "Regina" by my loved ones, nobody ever
dared to scold me. My parents and siblings were always gentle with me. I used
to tell my friends I had asthma, as I thought it would make sense to
them. I actually thought PH was another name for ''Heart asthma.'' However,
my cardiologist scolded me and said, "If you knew the severity of what you
have you would never call it asthma again! I can expect only an illiterate
person to compare it to asthma."<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<b>What are you able to do that
doctors said you couldn't? <o:p></o:p></b></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlEWV9gzoscYsn3BrLwhEBHbpEhSP44I1PqmG7feXEJw40ozXYAYNFgLqrE4XUWOoXQfNvSUzIfQw3eZ64M38lpruLcqMPTTf4fs-rST1gLzFGqNqZbNWy3PbEHQKcplnzed_CTw4LIfw/s1600/20141224-0058.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlEWV9gzoscYsn3BrLwhEBHbpEhSP44I1PqmG7feXEJw40ozXYAYNFgLqrE4XUWOoXQfNvSUzIfQw3eZ64M38lpruLcqMPTTf4fs-rST1gLzFGqNqZbNWy3PbEHQKcplnzed_CTw4LIfw/s1600/20141224-0058.jpeg" height="183" width="200" /></a></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
For the first five years, I was completely unaware of the fact
that I had PH and that the doctors had thought I wouldn't live longer than 5
years. My doctors asked me to quit my studies after 11th grade. I was
doing pre-medical which they thought was too demanding and stressful. I argued and
promised them I would avoid stress and I somehow passed it with A+. I was a
good student and never ever thought, "Oh! I'm chronically ill. I am
about to die, why am I studying?"<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
However, I fell more severely ill and this time as the hole in my
heart enlarged, it was decided my pre-med studies were a no-go. It was
suggested I choose an easier course of study to have less impact on my health.
I used to think about it for the days and nights and cry the whole night
because I felt I wanted to do so much, to be so infused with all the energy to
put into my work, but I was not able to, and that was really frustrating....<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I had nothing else to do and an empty mind is a devils workshop. Pessimism
started creeping up on me, and it felt there was no way to cast off melancholy.
But, my parents helped me to choose a course of study, honors in English
literature & linguistics. There have been many days of exacerbation, but I
think to "give up" is accepting your defeat and that being a PHighter
or warrior you are not supposed to give up.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
They told me to avoid stairs and sports, I was actually supposed
to limit my activities that demands more physical exertion... but, I am good at
aerobics (an amazing choreographer, or so everyone says). My cardiologist says it’s
not good for me, but whenever I listen to my favorite music I cannot help it, I
consider it my exciting pulmonary rehab.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
I am studying at a place far away far from home and living in
hostel. I have to do everything on my
own and that's a big deal for me. I am able to do everything, but I need
"little breaks,” my friends call it "pause time". I think PH
doesn't hinder you from living a normal life, we may just need to do it a little more "carefully." <span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<b>What is your dating life or
marriage like with PH/Oxygen?<o:p></o:p></b></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I was in 11th grade when I was being told by my doctor that
"you are not supposed to get married." It was a great shock for me, I
have never considered myself as a
patient, so I argued with my doctor and asked why. He said "You cannot take care of yourself,
how can you manage a home of your own?”<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
After 2 years my cardiologist said the same thing but in a condescending
way, he remarked "NO ONE ACCEPT AN OPEN HEART WITH OPEN HEART " ... a
brutal statement indeed. It served as an
eye-opener for me, I couldn't argue this time because everything was so clear,
tears blurred my vision because the initial acceptance of some facts is really
a hard pill to swallow but once you make up your mind everything becomes easy.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
It still resonates in my mind and hits me hard emotionally, but I
am not convinced by this idea. My parents wanted to me to grow-up an independent
and brave girl. People will definitely not be calling me a "Spinster." <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I am not saying a PHighter should or shouldn't get married, I am
just trying to say this world is so cruel and being patient there is a
possibility that you can be rejected or considered as a big
"responsibility,” by a potential partner. Nearly all of the PH patients I
know do marry, have kids (biological or adopted) and are living their lives
happily because they are lucky ones to get their "rainbow" after the
hurricane. But not everyone is lucky enough, I am an eternal optimist, I do
believe in soul-mate theory. <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
But my focus and priority is my health so my ''BIG DAY'' would be
the day I’ll get perfectly alright, yes that miracle day! I have seen many
people posting in PH groups they are so anxious, perplexed & concerned
about it (finding a partner), I would say "HAVE A FIRM FAITH" stay
"STRONG" , KEEP YOUR SPIRITS HIGH , if luck favors you ! Great! If it
doesn't that's not end of life...<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
One thing that my mother says when pessimism lapses on me
"DON'T WORRY WHO KNOWS WHERE THE WIND MAY BLOW FOR MY GIRL." <o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<b>Hardest part of life with PH?<o:p></o:p></b></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCFjFFPO0eTIqpTSjU74qnah70YcKt5q3pgdfBoSRohLl3zH2qW2H-LLbFUybB3HZxcHRVK1FBRiEa2Z2N5IDMIljJy5GL33vYSB5acS2W2ycRt7P9VH2yk-faQ0UTod04wjn9NZknGGo/s1600/26052012586+-+Copy+(2)%2B-%2BCopy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCFjFFPO0eTIqpTSjU74qnah70YcKt5q3pgdfBoSRohLl3zH2qW2H-LLbFUybB3HZxcHRVK1FBRiEa2Z2N5IDMIljJy5GL33vYSB5acS2W2ycRt7P9VH2yk-faQ0UTod04wjn9NZknGGo/s1600/26052012586+-+Copy+(2)%2B-%2BCopy.jpg" height="200" width="159" /></a></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
The hardest part was the "acceptance" that I have a
chronically terminal illness and I've a short time to live and being a kid this
acceptance-phase prolonged ... my doctor
told me that only "will power '' will keep me alive. I've conceded to PH
and every reality related to it with dignity....<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Another hard part was when I couldn't study what I wanted to or I
grew up dreaming of, because a person with right heart failure was not
eligible.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I've had my days when I was really down and losing hope, but this
was a greatest "learning-journey”. That pain must have taught me about the
life, people & myself. It’s been a massive learning curve, so much about
everything .I've experienced good things and bad things myself and that has
taught me that the world is not all flowery, everybody doesn't want good for
you ,friendship's changing equations, dynamics .I've also started to "
grow-up" after fiercely resisting for many years.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Besides PH I have vigorously swollen "tonsils” for approx. 14
years and it hurts, in extreme condition it becomes red ... My ENT specialist says I have needed
surgery for the past 13 years, but due to anesthesia risk, they call me a HIGH
RISK PATIENT and no one is ready to take that risk. That's why I am desperately
waiting for a “miracle", seemingly all doors are closed for me but I have
a blind faith in God that he’ll open all the doors at right time.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
So, this was some of my story. In nutshell, I think my disease has
helped me focus on what's important and let go of little things. I've made
peace with the fact that there is a possibility I’ll die young, but HOPE is
everything. Even healthy people aren't promised tomorrow. Respect the fact that
you're a PHighter, it demands bravery as each day is fight and adventure,
pain demands to be felt, life isn't about how to survive the storm, but how to
dance in rain so be thankful for what you have and you'll end up having more.<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
</div>
<div style="margin-bottom: .0001pt; margin: 0in;">
I literally count my own blessing and think that if the pain is so
damn bigger, reward would be colossal. <span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
Stay tune for Part II of "A PH Story"</div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com2tag:blogger.com,1999:blog-2528375130116935800.post-35268790005907339802015-02-06T14:02:00.004-08:002015-02-06T14:08:52.131-08:00Living With A Rare Disease<h3>
By Kiara Tatum</h3>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7gudZOlSLQFTOQ5TxI6_SK5nDKLfAhU8HZuXretS3Ta1tGToYYbnwov5Zg9wpRaRNuqnLiBVgQbx38_RNxJyh5XedkWuI-y_f1EW6BxpmCjuPZDOoV0na9v66cMFY1zMzqtkaxl5TDB8/s1600/rdd-logo-small.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7gudZOlSLQFTOQ5TxI6_SK5nDKLfAhU8HZuXretS3Ta1tGToYYbnwov5Zg9wpRaRNuqnLiBVgQbx38_RNxJyh5XedkWuI-y_f1EW6BxpmCjuPZDOoV0na9v66cMFY1zMzqtkaxl5TDB8/s1600/rdd-logo-small.jpg" /></a></div>
Another year has come, and Rare Disease Day is on Saturday, February 28. And the facts still remain that there are 30,000 PHighters living with PH in the United States, and I'm one of those PHighters. I know that there are others all around that are living with PH and other rare diseases, and we need to spread the word about PH. There are many ways to get involved and share your story.<br />
<br />
"Rare Disease Day was first observed in Europe in 2008. It was established by the European Rare Disease Organization (EURODIS). In 2009, EURODIS asked NORD (National Organization of Rare Diseases to be its partner in this initiative and to sponsor Rare Disease Day in the United States.... In 2014, more than 80 countries participated and, through social media, the awareness, and participation has an even broader reach. Each year, Rare Disease Day is observed on the last day of February. The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored." <a href="http://rarediseaseday.us/about/history/" target="_blank">History of Rare Disease Day</a><br />
<br />
Having a rare disease can be a very lonely and scary place where you feel no one understands what you're going through and you don't know what your day will be like. It doesn't only affect the person with the disease, but it affects their family and friends. I was diagnosed with PH in March, 2006, and I have been PHighting ever since that day. But I didn't do it alone. I have my family there to support me and care for me when I can't care for myself. I have PHriends that I can call upon for support and understanding. I have my friends that remind me of who I was before I had PH and that I'm still that girl. So this Rare Disease Day, I'm going to celebrate, share my story, and bring awareness of PH to the community via social network.<br />
<br />
PHA participates in Rare Disease Day. Will you join us? Find out what you can do to get involved. Let's share our stories, let's bring PH awareness to all around the world this year for Rare Disease Day. <a href="http://www.phassociation.org/rarediseaseday2015" target="_blank">Rare Disease Day 2015 - PH</a>Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-18743122482957306292014-12-05T17:00:00.000-08:002014-12-08T09:02:18.974-08:00GenHope Spotlight: Syrena Arevalo<i>By: Tadesse Wondwosen, PHA Intern</i><br />
<b><span style="font-size: large;">The younger generation of PH patients continue to overcome hurdles and make strides towards improving their lives with PH. Syrena Arevalo shares her story on embracing her PH and using what motives her as fuel.</span></b><br />
<blockquote class="tr_bq">
<b>PHA: Please state your name and where you’re from?</b> </blockquote>
<blockquote class="tr_bq">
<b>Syrena Arevalo:</b> <i>"My name is Syrena Arevalo
and I'm a proud Tucsonan! I graduated from the University of Arizona in 2013
with a double Bachelor's Degree in History and Mexican American Studies."</i></blockquote>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<o:p></o:p></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>PHA: When were you diagnosed with PH?</b></blockquote>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>Syrena:</b><i> "I was diagnosed with
Pulmonary Hypertension in August of 2012 after being rushed to the Emergency
Room with Right Side Heart Failure. At the time, I was at the beginning of my
senior year in college and had so many plans lined up for the year. But as we
all know, we never know what obstacles will be placed in our path. This was a
time in my life that I wanted to focus on my career and what I wanted to do
with my life. I wasn't ready to focus on the unknown."</i></blockquote>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i><o:p></o:p></i></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>PHA: What are some of the challenges (if any) that you face when keeping up
with your PH?</b></blockquote>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>Syrena:</b> <i>"When I went back to school,
many things changed. Not only did I have to try to focus on my studies I had to
be aware of doctor’s appointments, medications, and how my breathing was doing
while going from building to building. There were times when I felt like I
really wanted to give up my dreams and my studies because it was just so
overwhelming. I felt very depressed for a very long time. But there was a part
of me that didn't allow myself to give up because I wasn't doing this just for
myself but for everyone that was there during the most trying period of my
young life."</i></blockquote>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<o:p></o:p></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>PHA: I hear that you are an artist and in a music band? Please tell me more
about that?</b></blockquote>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b><br /></b></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>Syrena:</b> <i>"Art and Music has always
been a part of my life. I’ve been a musician for about 15 years and play in a
local Mariachi group. It has always been a great escape for me and allowed me
to express myself while bringing joy to those watching and listening. I have
met so many amazing people and have had to opportunity to perform in many great
venues. My greatest accomplishment occurred after I was diagnosed. November of
2012, only three months after diagnoses, I entered a vocal competition in Las
Cruces, New Mexico. I went toe to toe with so many great performers and singers
in the region who attended the Mariachi conference that year. One of them would
eventually become my boyfriend. I felt so much support at the competition that
it was overwhelming. I had brought with me periwinkle ribbons and info cards
with me and those who competed as well as the Mariachis who backed me up were
more than willing to wear them. Even though it was a tiny gesture, it meant the
world to me. In the end, I won the competition and received a scholarship that
would pay for a portion of my last semester of college."<o:p></o:p></i><br />
<i><br /></i>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNYhO0_hxuB5E0ot9WAA3WaQ-bONHRE-NasPgq3tf8SkoQYgY-ON-G-KF9ndaVFAmhPnVOU5Ak9k6theakPM3WXGWHPSFW8ME1E_i1JEmBgonemiNN45DaqKwg9ZpfY1O2fcX-4jUwvxVq/s1600/Hummingbird.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNYhO0_hxuB5E0ot9WAA3WaQ-bONHRE-NasPgq3tf8SkoQYgY-ON-G-KF9ndaVFAmhPnVOU5Ak9k6theakPM3WXGWHPSFW8ME1E_i1JEmBgonemiNN45DaqKwg9ZpfY1O2fcX-4jUwvxVq/s1600/Hummingbird.jpg" height="247" width="320" /></a> </div>
</div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<i>"After my diagnoses, I took a
semester off of school to adjust to the side effects and site changes that
Remodulin had on me. During this time, I submerged myself in painting. Before
this, I would often doodle and take art classes in High school here and there,
but nothing really serious. It allowed me to put down on canvas what I was
feeling and what I wanted for my future. I became better and better at acrylic
painting and recently, I was invited to show my work at a local art show. I'm
hoping to do more shows in the future and keep doing it just for fun!"</i></div>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<o:p></o:p></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>PHA: Syrena what would you say keeps you motivated in not having your PH
define you? </b></blockquote>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>Syrena:</b> <i>"Life motivates me. Why
should I let this disease define who I am? There are so many things that I still
want to do. To travel, start a family, begin a career. During these last two
years, I've had so many people tell me that they are praying for me and my
family members, many people I didn't even know. My friends and family have been
the greatest cheerleaders that I could have asked for. They have motivated me
to keep up with my health even though it can be difficult sometimes. Not giving
up is the least I can do for them."</i></blockquote>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<o:p></o:p></div>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>PHA: Lastly, what would your advice be in how the younger generation can
live with PH and still be able to live normal lives?</b></blockquote>
<blockquote class="tr_bq" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<b>Syrena: </b><i>"</i><i>I would be lying if I told you
that it's going to be easy because it's not. <b>But we all have to remember that
we have PH, but PH doesn't have us.</b> We have such a great support group of
amazing young men and women who know just what we are going through within
Generation Hope as well as in other communities on the web or in your local
communities. Seek them if you have questions or concerns. We are all in this
fight together. Lastly, continue to do what you love to do. It can
make the tough times a little easier." </i></blockquote>
<div style="margin-bottom: .0001pt; margin-bottom: 0in;">
<o:p></o:p></div>
<br />
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-78010636790388271022014-11-07T14:50:00.000-08:002014-11-07T14:50:00.661-08:00PHight for PH......Karate Style!<span style="font-size: large;"><i>By Tadesse Wondwosen, PHA Intern</i></span><br />
<div style="font-family: Times,"Times New Roman",serif;">
<b><br /></b></div>
<div>
<div style="font-family: Times,"Times New Roman",serif; text-align: left;">
<b><i> <span style="font-size: large;"> </span><span style="font-size: large;"> </span><span style="font-size: large;">For our younger generation, living with Pulmonary Hypertension can present many challenges. Learning how to meet those challenges can be a drawn-out process. Faced with the normality of being young and aspiring, the younger PH population must also come to terms with being able to cope and manage their condition as well. We spoke with Shannon O’Donnell, an ambitious teen, as she shares her experience with fighting PH and living life to the fullest.</span></i></b></div>
--------------------------------------------------------------------------------------------------------------------------<br />
<br />
<b>PHA: Could you please introduce yourself and briefly explain your connection with PH to our readers?</b><br />
<i><br /></i>
<i><b>Shannon O' Donnell: </b>"Hi everyone my name is Shannon O’Donnell and I’m a pulmonary hypertension patient. I’m nineteen and I’ve had PH for thirteen years. I’m on the crono five pump for remodulin and also many oral medications and oxygen at night. I’m currently a karate teacher for mentally challenged children and will be competing in my first tournament in two weeks!"</i><br />
<br />
<b> PHA: From my understanding, you are still in college? What school do you attend and what is your focus?</b><br />
<i><br /></i>
<i><b>Shannon:</b> "I attend Bunker Hill Community College in Charlestown, Mass. My major is pediatric radiology and I’m currently in the prerequisite stage of the program."</i><br />
<br />
<b>PHA: Being in college, what are some of the challenges (if any) that you face when keeping up with your PH?</b><br />
<i><br /></i>
<i><b>Shannon:</b> "Well I’ve had some issues with some of my professors who don’t always understand why I miss class or leave early, even if I tell them ahead of time."</i><br />
<br />
<b> PHA: Being away from home, is there still a network of support between your family and friends?</b><br />
<i><br /></i>
<i><b>Shannon: </b>"My school doesn’t have dorms so I still have the luxury of living at home with my family who are constantly caring for me. Most of my friends have gone off to further schools; however I still received their love and support as well."</i><br />
<br />
<b> PHA: Shannon, what would you say keeps you motivated in not having your PH define you?</b><br />
<i><br /></i>
<i><b>Shannon:</b> "Darren Criss (Blaine from glee) has this saying “There is nothing more bad-ass than being yourself.” And there’s also a lyric from Demi Lovato’s song Fire Starter, “I'm a bad-ass jumping off the moving train I'm a Jane Bond, putting all them guys to shame I'm a wild card, and I'm gonna steal your game you better watch out.” I do what I want and listen to what my body tells me. I just try to be myself no matter what." </i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPRu_26F3aTuX1x5y3rfaqfVzgKHC3iyUhO0gKtK9MPS4QzvWNvl3eHXc645ENj9i6UIrCSl7rR_4RnAa950678E3zPkDnD75JXBKmiJs507L7yvmywA90zkBjeghgCJdiGjctU-_AWBgT/s1600/pha+blog.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPRu_26F3aTuX1x5y3rfaqfVzgKHC3iyUhO0gKtK9MPS4QzvWNvl3eHXc645ENj9i6UIrCSl7rR_4RnAa950678E3zPkDnD75JXBKmiJs507L7yvmywA90zkBjeghgCJdiGjctU-_AWBgT/s1600/pha+blog.jpg" height="240" width="320" /></a> </div>
<div class="separator" style="clear: both; text-align: left;">
<b>PHA: And lastly- what would your advice be in how the younger generation can live with PH and still be able to live normal lives?</b></div>
<div class="separator" style="clear: both; text-align: left;">
<i><br /></i></div>
<div class="separator" style="clear: both; text-align: left;">
<i><b>Shannon:</b> "Listen to your body and live how you want while still respecting your parents. And it’s okay to be the smartest person in science class. Go to junior and senior prom don’t let PH run your live because you have one life to live so let it go and have fun."</i></div>
<div style="text-align: right;">
<br /></div>
</div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-33613867896424545662014-11-05T16:39:00.000-08:002014-11-05T17:18:11.485-08:00Generation Hope #StillPHighting<h4>
by Generation Hope Advisory Board</h4>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnAOJoFrzvJkuxy8YIs20Rretutd_UQRkqrExfPeeIknpA85L6tVFQwMZn3Sfk7ro6p63ZvX-cdVQC2VIj1dxrKoIpp-hMaExfvw3mpFXEsFJkcgOT59bTRGghbtGUnYuZZX0TFSmqli0/s1600/phawareco-sponsor-sm.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnAOJoFrzvJkuxy8YIs20Rretutd_UQRkqrExfPeeIknpA85L6tVFQwMZn3Sfk7ro6p63ZvX-cdVQC2VIj1dxrKoIpp-hMaExfvw3mpFXEsFJkcgOT59bTRGghbtGUnYuZZX0TFSmqli0/s1600/phawareco-sponsor-sm.gif" /></a></div>
November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".<br />
<br />
Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to <a href="mailto:AngeliaD@phassociation.org">AngeliaD@phassociation.org</a>, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.<br />
<br />
Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/RyzY4W-4tjc" width="480"></iframe><br />
<br />
For more details and a guided script for your selfie-video visit <a href="http://phassociation.org/stillphighting">PHAssociation.org/stillphighting</a>Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-23044021857526657762014-10-27T20:05:00.000-07:002014-10-27T20:14:37.625-07:00What's A Life Coach?<h4>
By Elisa Lipnick</h4>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf9QvXQLNkihtKwHF3IjL5xRMnyR0jNNgGMCCojO6Kmqn9D-93xWnZHLFcb_qSbBBBPelmh-JlWHMFraPgHlw_OjDCBpWi8DVKbsAplAm9ghmucQ-kTep4sdkiS41272RZmeqfebdeIxk/s1600/make+things+happen.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf9QvXQLNkihtKwHF3IjL5xRMnyR0jNNgGMCCojO6Kmqn9D-93xWnZHLFcb_qSbBBBPelmh-JlWHMFraPgHlw_OjDCBpWi8DVKbsAplAm9ghmucQ-kTep4sdkiS41272RZmeqfebdeIxk/s1600/make+things+happen.jpg" height="112" width="200" /></a></div>
<span style="font-family: "Times New Roman","serif";">Sometimes we can use a little extra help in our lives, especially when you are diagnosed with a chronic illness. Need help with finding what's next for you in life, defining your goals, getting a job, etc., a life coach can help you.</span><br />
<span style="font-family: "Times New Roman","serif";"><br /></span>
<span style="font-family: "Times New Roman","serif";">The
definition of coaching per the International Coach Federation:<o:p></o:p></span></div>
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<span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">ICF defines
coaching as partnering with clients in a thought-provoking and creative process
that inspires them to maximize their personal and professional potential, which
is particularly important in today’s uncertain and complex environment. Coaches
honor the client as the expert in his or her life and work and believe every
client is creative, resourceful and whole. Standing on this foundation, the
coach's responsibility is to:<o:p></o:p></span></div>
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</span></span><!--[endif]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Discover,
clarify, and align with what the client wants to achieve<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-size: 15.0pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Encourage
client self-discovery<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-size: 15.0pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Elicit
client-generated solutions and strategies<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-size: 15.0pt; mso-fareast-font-family: "Times New Roman";"><span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Hold
the client responsible and accountable<o:p></o:p></span></div>
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</span></span><!--[endif]--><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"> </span></div>
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<span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">This process helps clients
dramatically improve their outlook on work and life, while improving their
leadership skills and unlocking their potential.<o:p></o:p></span></div>
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<span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">FAQ’s:<o:p></o:p></span></div>
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<span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"><a href="http://www.coachfederation.org/need/landing.cfm?ItemNumber=978&navItemNumber=567">http://www.coachfederation.org/need/landing.cfm?ItemNumber=978&navItemNumber=567</a><o:p></o:p></span></div>
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<br /></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">FAQ’s
for me as a Life & Wellness Coach:<o:p></o:p></span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtpyp36tx_7hwPojuFfdA5MoStuhgqhHYJamR-Lp8V79SmJ5q4msVvSugZx7CXodQNTUfB8MdmykpGy4YgA-oH64Kr3usaAt7z39EYSrmHnp1Abk8PKRLUh_ac1SbUyQwIUE3dyJPXZEs/s1600/dreamstimeextrasmall_23159248.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/AVvXsEhtpyp36tx_7hwPojuFfdA5MoStuhgqhHYJamR-Lp8V79SmJ5q4msVvSugZx7CXodQNTUfB8MdmykpGy4YgA-oH64Kr3usaAt7z39EYSrmHnp1Abk8PKRLUh_ac1SbUyQwIUE3dyJPXZEs/s1600/dreamstimeextrasmall_23159248.jpg" height="200" width="200" /></a></div>
<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">What
is coaching?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"> Coaching is a partnership between
coach and client. Through creative process, the coach will assist the client in
getting from where they are to where they would like to be. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">How
is coaching beneficial?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
Coaching is beneficial for many reasons. Clients see many different benefits.
Personal development is one of the biggest benefits. Clients go through the
coaching process and discover many personal opportunities and aha moments. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Where
do you meet your clients?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
I meet me clients be phone. We have one-hour sessions each week by phone. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Is
these homework?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"> Yes, if a
client needs certain tools for their growth they will be provided with these
tools. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Can
I do group coaching?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
Group coaching is an option. We will have a conference call style coaching
session with the clients who are interested I group coaching. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">What
does the process look like?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
This is a creative process in which the client has full control of the
direction of the coaching. I will check in with the client and make sure we
stay on track with what is on the client’s agenda. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Will
you give me advice?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
My job is not to give advice; this is a discovery process for the client. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Is
life coaching similar to therapy?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"> No, coaching focuses on the present and how to move forward
into your future. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">How
long does it take?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"> This
depends on the client, but most coaching relationships last six months to a
year. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">What
is the client’s responsibility?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
To call in, be present, and do the work. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">How
do you chose the right coach?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
Make sure you find a coach that you feel comfortable with. That is very
important. Not every coach will work for every person. <o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Is
there a time commitment?</span></b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">
One hour a week every week.<o:p></o:p></span></div>
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<b><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;">Here
is a review from a former client Erica Cenci:<o:p></o:p></span></b></div>
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<span style="color: #222222; font-family: "Times New Roman","serif"; mso-bidi-font-family: Arial; mso-bidi-font-size: 13.0pt;">Working with Elisa really helped me
gain a better understanding of myself. Through our various sessions, Elisa made
me feel safe, and allowed me the opportunity to open up and be completely
honest with inner-self — something I have struggled with in the past. Her
questions were thought provoking and brought me to a place of greater awareness
and peace. Through her coaching, I was challenged and stretched to new levels,
moving me closer toward my goals and desires in life. I would recommend Elisa
to anyone looking to get greater clarity, understanding and movement toward
their goals in life.</span><span style="color: #323c41; font-family: "Times New Roman","serif"; mso-bidi-font-family: Times; mso-bidi-font-size: 15.0pt;"><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-2312874992940808812014-09-01T19:32:00.000-07:002014-09-01T19:38:21.913-07:00The Long Road to Her<h3 class="post-title entry-title" itemprop="name" style="background-color: white; color: #666666; font-family: 'Trebuchet MS', Trebuchet, sans-serif; margin: 20px 0px 0px; position: relative;">
By Colleen Brunetti</h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSNTqNc9fAlUsTKYv5Cd_utgn5FwpexnjnDjTvv0ljqqbJpC4MHYD0d2RW6_RdoF6JWZMUpiMYPi62l-WjdVitozLgKz1cqiw3GCcLomFamxxfXY9HDf46OHdM2cwQcUyKxZStWETxQrc/s1600/colleen-weareadopting.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSNTqNc9fAlUsTKYv5Cd_utgn5FwpexnjnDjTvv0ljqqbJpC4MHYD0d2RW6_RdoF6JWZMUpiMYPi62l-WjdVitozLgKz1cqiw3GCcLomFamxxfXY9HDf46OHdM2cwQcUyKxZStWETxQrc/s1600/colleen-weareadopting.jpg" height="150" width="200" /></a><i>This blog is probably one of the most raw things I have written to date. It contains thoughts and experiences I had previously chosen to keep private (in fact much of it was written a year ago and never published) - odd for someone like me who has otherwise made a decision to live this diagnosis out loud in an attempt to change its course. But now is the time to share. My prayer for you if you are living some of these same struggles is that you find some hope in our story.<br />~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</i><br />
<br />
My journey to her began at age 19. It was the year I took the job as a nanny for a little girl newly adopted from China. I clearly remember rocking her to sleep in my arms, gazing down at that gorgeous perfect little face, and having the wind sucked out of me. What if her parents had not cared enough to go and get her? What if she had stayed in a Chinese orphanage? What hell of a life would she have lived? And here she was, safe in their home, safe in my arms, the world at her feet. I vowed then that I too would make the difference in a little life, and adopt.<br />
<br />
I knew the child I got would be a girl... Altruistically speaking, girls have a pretty tough time in much of the world and I wanted to make a difference for one. Totally selfishly, I wanted to raise a ballet dancer, like me, someone to share that with (for as long as she would tolerate it before asserting independence, of course!)<br />
<br />
Eight years ago I had another brush with adoption that only further solidified these feelings. I was teaching special education and I had twin girls from India on my case load. They were the result of a botched late-term abortion and had survived, eventually being adopted by an American couple. Again, I found myself looking at them and thinking, "What if..."<br />
<br />
Fast forward many years, and I have an incredible biological son. A son who is my own miracle - as we now know I shouldn't have survived the pregnancy because I probably had PH already, and we just didn't know it.<br />
<br />
When you have PH you can't get pregnant. Or, at least, you really really shouldn't. This is something you're told pretty much upon diagnosis. When I was told, it didn't faze me. My son was an infant at the time, and pregnancy was not something I was too big of a fan of the first time around. Since I already knew I wanted to adopt, I figured that would be our route, and that was totally cool.<br />
<br />
Except, for a long time it wasn't our route at all. I was so busy chasing a toddler and trying to get better and trying to be self-employed, and my husband always works so hard, and our lives were just full. Although we batted the idea of adoption around many times, the answer always seemed to be "Not now." And that was fine.<br />
<br />
But then a little over a year ago my damn biological clock started ticking...and chiming... and the gong started going off... and I couldn't make it stop. I wanted that baby.<br />
<br />
After long heart-to-hearts with my husband, it was clear he just wasn't ready for adoption. And I couldn't blame him. It's not like other times when we've disagreed and my nose is all out of joint because he doesn't see it my way (come on, you know you all get like that). This time, he had real fears about the future. How the financial burden of supporting our family is by and large on him. And worse, he had fears about being a single parent some day, if PH took the ultimate toll. These aren't fears we face head on too often. In fact, we never had before. We've chosen to live with the positive and not think that way. But when we're choosing to discuss a very purposeful choice for the long-term future, and involve the life of a child, we kind of have to wrestle with that dark side too.<br />
<br />
For the sake of my marriage, I vowed to force this clock away. MAKE it go away. Focus on my son - whom I love and adore and is so so so enough in all possible ways. Basically, I tried to beat my biology. And pretend I was winning. And I did okay... for a while.<br />
<br />
Then in the spring of 2013 I attended a dance recital. And I sat there and looked at the moms around me smiling with so much pride for their daughters on stage and I just lost it. I sat in the dark auditorium and cried silently. That should have been me. PH robbed that from me.<br />
<br />
The grief followed me in the months ahead, although I tried to keep it in. Baby showers were torture. My sister got pregnant and I cried my way through shopping for the niece whose arrival I was over the moon excited for. And finally it was clear that I was going to have to either get some serious professional help in letting this all go, or re-visit the decision.<br />
<br />
I tentatively broached the topic with my husband. And... he said yes. Why the timing is right now, I just don't know (neither does he). But my health is stable (thriving, even), all of my doctors are 100% in support of this decision, my business is growing, things have changed... and now we're ready as a couple and as a family.<br />
<br />
Then it was just down to deciding on how to get her. International adoption held little draw now. I wasn't that interested in having to travel overseas with PH to go and collect her. Domestic adoption sure sounded good, but the tens of thousands of dollars it costs seriously deterred us. Surrogacy was also on the table... but I ended up deciding that if we really were going to do this, I needed to stay true to my original intent all those years ago and help a child in need.<br />
<br />
And so, we were left with the foster system. We have chosen to adopt through social services and take a child whose parents can not care for her. It does not escape me that for us to get our daughter, someone else will loose theirs.<br />
<br />
This path is scary. In fact, I should probably be much more jittery about it than I am. The child may come to us drug exposed, abused, neglected... who knows. We could be placed with a child, only to have the arrangement fall through because the system deems reunification with the birth family or extended family is better. But the truth is, the road to her has been so very long, sometimes so very hard, and now is the time.<br />
<br />
It is going to be fine.<br />
<br />
I have total peace about it. A peace that surpasses understanding, and I'm pretty content with that.<br />
<br />
We're almost done with all of our DCF licensure requirements.<br />
<br />
Now, all we have to do is wait for her.</div>
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The Long Road to Her was originally posted on Colleen's blog on July 2. Follow Colleen's blog, <a href="http://phandthenewnormal.blogspot.com/" target="_blank">PH and "The New Normal"</a></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-320253262548234232014-08-14T12:10:00.001-07:002014-08-14T12:25:40.879-07:00I Am Not My Disease!<h4>
By Kiara Tatum</h4>
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<tr><td class="tr-caption" style="text-align: center;">Kiara and niece being silly</td></tr>
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I was reading a youth worker journal article, and the topic was
identity. I haven’t seen it yet, but the
article was referring to the movie, “Fault in Our Stars.” The movie follows the
growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also
diagnosed with cancer, at a support group meeting. Augustus asks Hazel, “So what’s your story?” She proceeds to tell him about when she was
diagnose with her cancer. But he interrupts
her and says, “No, not your cancer story, but your real story.” </div>
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<o:p></o:p></div>
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That statement made me think about how I defined myself
since diagnosed with PH eight years ago.
I was someone before I was sick, and I built friendships, had hobbies,
and participated in activities that didn’t revolve around PH. Sometimes we are so focused on our PH
diagnosis and that PH journey that we forget that we are much more than
that. How I identify myself is important
when sharing my story with others. Do I
start with I was diagnosed with PH in March 2006 after years of knowing that
something was wrong with me. Or do I start
with: My name is Kiara, and I like to be silly and have fun. I love to watch the ID Channel, sing songs
out of nowhere, laugh and smile a lot. I
love the Lord because He loves me and He has brought me through such hard times
such as these that I want to show that love to others, so they too will know
who the Lord is through my actions which is easier said than done. <o:p></o:p></div>
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So you see I’m more than just a girl diagnosed with PH at
the age of 26 who had to leave her job because she wasn’t able to continue to
work. I’m more than that, and so are
you. You are more than a diagnosis that
your doctor gave you, and you are more than this disease that wants to destroy
every part of you. We are PHighters, we
are survivors, we are warriors, and we are strong. And we should not let ourselves be defined by
our disease any more. <o:p></o:p></div>
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I love to listen to music from alternative to country to pop
to r&b; I love to laugh and smile; I love to spend time with my family; I’m
an aunt, I’m a sister, and I’m a daughter.
I sometimes get mad for no other reason than I woke up that way and will
probably stay that way for a few hours; don’t take it personal. I’m terrified of spiders, and I love to work
with youth. So that’s a little bit about
me. So what’s your story? Not your PH story, but your real story?<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com1tag:blogger.com,1999:blog-2528375130116935800.post-35760058214629803002014-08-03T21:42:00.000-07:002014-08-03T21:42:46.243-07:00Dealing with changes in your health<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b><span style="font-size: large;">Guest Blog Post! By Sara Hunt </span></b></span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Like sufferers of most chronic illnesses, PH patients have to deal not only with the symptoms and impact of PH itself but also with sudden changes in our health and lifestyles. Booking a holiday a year in advance feels like tempting fate. Life is suddenly so much more unpredictable and fragile than it was pre-diagnosis. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">My health has been particularly unpredictable. Changes in my health have happened practically overnight on more than one occasion. Three years ago a lung haemorrhage caused a dramatic increase in my pulmonary pressures and I went from perusing a promising career as a dancer to using a wheelchair for any kind of outing. Then, February this year, I simply woke up with worsening breathlessness that never got better. I'm now on the transplant list. <br /><br />There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.<br /><br />Given the increasing unpredictability of my life I feel I might be able to offer some advice here. <br /><br /><b>1. Stop comparing your life to the lives of those around you. </b><br />Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /><b>2. Don't compare your health now to your health in the past. </b><br />On a similar note, it's important not to lament the past. Treasure the good memories rather than becoming bitter about them. Make good memories for the future, you'll probably need them! <br /><br /><b>3. Find ways of making things feel normal. </b><br />Although your life is going to be affected by your health, it doesn't have to control it. Making small changes and making an effort to go out and do the things you used to is important. From simply having a evening meal with your friends instead of a late night out to going to see a show instead of performing in one yourself. <br /><br /><b>4. Learn to adapt. </b>It's easier said than done but humans are designed to adapt to change. It's much more nurture that gets us stuck in our ways rather than nature. We are designed to survive and do it to the best of our ability. It's not easy but it's completely possible and your mind and body is designed to do it well. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7xPGcNVOiq0bzog7I9UlVj8FNtpmyLIpQcjv0eTRNCkdrK0M9U35Xm9XujPK7vWKrgb8HtRyVqUoc5O2A1CZI2PPvgIWzRwpOUh7LknnTqA8_LaoXIgBrIlLPsabrTcZCCVsKamIcM1xL/s1600/71488f03-22b3-4eb3-80e5-68de2c7fb41e_zps8d5ef0e1.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/AVvXsEh7xPGcNVOiq0bzog7I9UlVj8FNtpmyLIpQcjv0eTRNCkdrK0M9U35Xm9XujPK7vWKrgb8HtRyVqUoc5O2A1CZI2PPvgIWzRwpOUh7LknnTqA8_LaoXIgBrIlLPsabrTcZCCVsKamIcM1xL/s1600/71488f03-22b3-4eb3-80e5-68de2c7fb41e_zps8d5ef0e1.jpg" height="313" width="320" /></a><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b><br /></b></span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>5. Help yourself feel in control. </b><br />We are all in control of our own lives and having a disease doesn't mean you're not. Making the effort to change the way you do things rather than cutting them out of your life completely is how I maintain some kind of control over my life. There are things you can't change but there are lots of things you can, concentrate on those. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /><b>6. Get out and try something new! </b><br />So you can't do some of the things you used to but there are plenty of new things to enjoy. Go to a food festival, check out the local book stores and go to a reading of an author you've never heard of, go to a comedy show, visit the local zoo, do something you'd never have thought of doing before and take a good friend along with you. It's easy to get stuck in a routine but new things and regular outings are brilliant for maintaining your sanity. And spending time with people you love is an extra special bonus. <br /><br />Hopefully these were useful. You're probably doing all these things already but this post should give you fresh drive to this summer and you can never have too much of that!<br /><br />Feel free to post any advice you have for dealing with changes in your health or even dealing with a new diagnosis. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">For more blog post by Sara visit her site at http://thegirlwithheartdisease.blogspot.com/2014/03/big-decisions.html</span></div>
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Anonymoushttp://www.blogger.com/profile/04708977787430555907noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-79389359541803707242014-07-11T10:00:00.000-07:002014-07-14T11:26:10.122-07:00Here Comes the Sun <b>By Marissa Barnes</b><br />
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<span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">As we enter into the warm summer months, I wanted to
introduce myself as PHA’s summer intern in the Patient and Caregiver Services
branch. The summer time is my first and foremost favorite time of the year, not
just because I break from school, but because every day I feel rejuvenated by
the warm air and happier with the sun shining.<span style="mso-spacerun: yes;">
</span>A few years ago I read this quote and since has been my life motto, to </span></span></div>
<div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;">“Always bring your own
sunshine.”<o:p></o:p></span></span></i></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3vDRVBavswFme_FjSMLlEhkArNj4i2VQpB_csw_96GgTcyjth_FG6szZ7P3gJVK-m9xWHnpW9QO4B8uSZk7AanG75fssJ4YWIVqfLAyV0JrQIIBQBqpd4muMvkSvq0yIE7__oconYE2j1/s1600/sun4%5B1%5D.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3vDRVBavswFme_FjSMLlEhkArNj4i2VQpB_csw_96GgTcyjth_FG6szZ7P3gJVK-m9xWHnpW9QO4B8uSZk7AanG75fssJ4YWIVqfLAyV0JrQIIBQBqpd4muMvkSvq0yIE7__oconYE2j1/s1600/sun4%5B1%5D.png" height="168" width="200" /></a><span style="font-size: 12pt; line-height: 115%;"><span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>I know for some, being in the sun can cause irritation
and the time spent under the sun’s rays for others their summer might not even
be all that sunny, for me, living in D.C. we have thunderstorms lined up every
day of the week. Regardless of the weather, I try to find a little bit of
sunshine in everything I do. I had made a post on the Facebook group asking
what some of your summer plans are to be this summer, whether you are
vacationing, spending time with friends, involving yourself in certain camps or
groups, etc.<o:p></o:p></span></span><br />
<br />
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<span style="font-family: Calibri;"><span style="font-size: 12pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>Kevin Mayhood – Paskawych
shares his summer plans saying, “</span><span style="font-size: 12pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I have a slogan and its ‘if I can do
it, you can do it’ and I keep trying to push myself to attempt new things,
despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently,
although there is a thought that we may have an idea as to a potential
associative disease. I am spending my summer in my hometown of Marietta, Ohio,
but it doesn't mean I am not excited. When I was going through my diagnostic
process, I needed something to keep my mind off of everything, so I jumped into
an idea a friend, and fellow theatre professional, had about starting a
professional summer theatre company in Marietta. So, we formed a group, and
over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).
</span></span></div>
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<span style="font-family: Calibri;"><span style="font-size: 12pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Kia Thompson-Allen who is 39 and was diagnosed with PAH in
2007, tells us this summer she will be, “keeping my 8 year old busy, taking him
to St. Louis to six flags and the zoo there”. Kia recommends </span><span style="color: #3e454c; font-size: 12pt; line-height: 115%;">staying in the water
parks to stay cool, plus drinking icy beverages and finding shade when you
can.<span style="mso-spacerun: yes;"> </span>Kia explains, “you know it's hard
on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good,
so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor
trampoline facility; all those places are air conditioned <span style="display: none; mso-hide: all;">:)</span> and ways to<span style="mso-spacerun: yes;"> </span>have fun and stay cool for us”!</span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsxK5nJbU2tcnE2z4UOZgFRR2dE-0P1VfIB3H98VW0klbTiXp7JR2VRSozIJFPETY9V93wQjidS2hd6-5X67dZ8PY-EUTp_4YXc-3vjXqZmgh6UzWooVilY93bSYTZXqudsAlfeUG_KI_x/s1600/10341947_10204200198073514_2087209313643740994_n%5B1%5D.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsxK5nJbU2tcnE2z4UOZgFRR2dE-0P1VfIB3H98VW0klbTiXp7JR2VRSozIJFPETY9V93wQjidS2hd6-5X67dZ8PY-EUTp_4YXc-3vjXqZmgh6UzWooVilY93bSYTZXqudsAlfeUG_KI_x/s1600/10341947_10204200198073514_2087209313643740994_n%5B1%5D.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kristine and family at Detroit Zoo </td></tr>
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<span style="font-family: Calibri;"><span style="color: #3e454c; font-size: 12pt; line-height: 115%;">Kristine Green </span><span style="color: #3e454c; font-size: 12pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">is 35 and was diagnosed with idiopathic
pulmonary arterial hypertension in July 2011.<span style="mso-spacerun: yes;">
</span>She says, “This summer, I am ALL about family time! I am blessed to stay
home with my four year old son. So far, we have gone to Movies Under the Stars-
where you watch a movie outside up on the mountain to support our local
firefighters, library reading programs, both of the "splash pads" in
our town and played a lot in our yard. I am most excited to go camping on the
Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off,
we load up our three pups and head to the river or swimming pool (minus the
dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay
cool too. My son and I are supposed to visit family/friends in Michigan (where
I am from) for 17 days- visiting numerous cities while there. However, I am not
sure about going right now since I am experiencing troublesome side effects
from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals
and maybe a Tiger's game! I will need a vacation from vacation after that! I
like a lot about summer, but harvesting fresh fruits and veggies from our
garden, camping and spending time with friends are probably my favorites”.</span></span></div>
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<span style="color: #3e454c; font-size: 12pt; line-height: 115%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><span style="font-family: Calibri;">We love hearing from all of you and your plans
for this season. Sometimes the heat can be intimidating to get outside and have
fun, but there are many ways to stay cool and still enjoy yourself. I hope you
all can find a little bit of sunshine in each part of your day </span></span></div>
Anonymoushttp://www.blogger.com/profile/04708977787430555907noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-47336015212641485412014-06-18T21:42:00.002-07:002014-06-18T21:43:37.495-07:00Generation Hope Goes to Indianapolis<h3>
by Kiara Tatum</h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ_TB9BuQSlCcOJsorzYc4-l1aD3-Y2iRe6jtTViieCgDE6Na1E-ChHSvbHT4synhlhFtg104AALAuSfV1M8ZomLUZEFCf-yFEdZ96pBUwZoHFHiAszQZwI4dbpDbi3lqpbgP5tX2APrQ/s1600/after+dark+sign.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/AVvXsEhQ_TB9BuQSlCcOJsorzYc4-l1aD3-Y2iRe6jtTViieCgDE6Na1E-ChHSvbHT4synhlhFtg104AALAuSfV1M8ZomLUZEFCf-yFEdZ96pBUwZoHFHiAszQZwI4dbpDbi3lqpbgP5tX2APrQ/s1600/after+dark+sign.jpg" height="133" width="200" /></a></div>
It's almost time... conference starts on Friday, June 20. And as people are traveling to Indianapolis for this year's conference, I see many postings from Generation Hope about their travels on Facebook. I'm very excited to meet up with PHriends that I haven't seen in two years, meet new PHriends, and see PHriends in person for the first time. I"m a bit nervous about flying again. My family isn't able to attend with me to conference, so I'll be traveling alone. So as we all check in to the conference over the next days, don't forget review your conference program book. There are many sessions centered around young adults that we hope you will attend. There's also a special meet up for Generation Hope. Generation Hope After Dark will be held on Friday, June 20, 8:30pm. I hope you'll make it out. Previous Generation Hope After Dark in Florida was a lot of fun! Brittany Riggins wrote about <a href="http://phagenerationhope.blogspot.com/2012/07/generation-hope-after-dark-2012.html" target="_blank">Generation Hope After 2012</a> in a previous posting. This year we're adding a little game which you can win prizes, so you don't want to miss this one. Join us for an evening of fun!!!<br />
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Safe travels to everyone!Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-32641926385042480992014-06-06T18:13:00.003-07:002014-06-06T18:13:57.119-07:00Be Like a Kangaroo! <h4>
By Kiara Tatum</h4>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrsAo6pRpna6MVE544jvYXZA5A48Ms3JH4FSnZolu058mG8JLU4rRC4Kci45MRDi3S73hNA7H1xvznNuLsdNs2UiqZlRyvgE5S1nN7xXATY6J6D6pM9qrBI6ptjt4RsE0cDtMpl_m7slI/s1600/Corbis-AB007306.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrsAo6pRpna6MVE544jvYXZA5A48Ms3JH4FSnZolu058mG8JLU4rRC4Kci45MRDi3S73hNA7H1xvznNuLsdNs2UiqZlRyvgE5S1nN7xXATY6J6D6pM9qrBI6ptjt4RsE0cDtMpl_m7slI/s1600/Corbis-AB007306.jpg" height="129" width="200" /></a></div>
A few days ago, I was reading my daily devotional, and it was talking about how kangaroos -- due to their shape of bodies and large tails -- cannot walk or bounce backwards. However, they bounce in forward movements very easily. And I thought about how I move in my life, and how I can get stuck in certain places. But the kangaroo can’t go backwards, and they move forward as part of their nature; I want to be like a kangaroo. I want to always be moving forward.<br />
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This sounds easier for a kangaroo to do; since, it’s their animal nature, but it’s a lot harder for people, especially those with a chronic illness like PH to follow this concept. To add this concept as part of our human nature; it seems almost unnatural. As a PH patient, I’m always having thoughts about why did I get PH; what if I didn’t gain so much weight, would I have gotten PH; if my pediatrician saw the whole in my heart when I was younger, would I have PH now; if I didn’t decide to go back to work would I be dealing with Social Security complications; and so on and so on. I don’t want to stay stuck on those things of the past because it's a lonely, dark, sad place to stay. As I read in the devotional I can’t really live there, and I don’t want my PHriends to live in the past either. I had to learn and I’m still learning these lessons in life:<br />
<ol>
<li>Leave the past behind you</li>
<li>Reach for things ahead of you</li>
<li>Think positively </li>
<li>Be hopeful</li>
<li>And know you’re never alone</li>
</ol>
I will be like a kangaroo; always moving forward. I will learn from my past, but leave it behind me, so that I can live a more fulfilled, joyous life.<br /><div>
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<br />Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-4907614485304571682014-03-12T14:09:00.001-07:002014-03-12T14:09:28.417-07:00PH Goes To College: Part 2<h3>
By Becca Atherton</h3>
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When I was just a few months old, my parents were told that I had only a 13% chance of living to the age of five. High school, Prom, getting my license and graduating high school were experienced my family never thought I’d get to experience – let alone college! But here I am today, twenty-one going to college, majoring in Psychology with a minor in Family/Marriage counseling. While going to college is an amazing experience that so many of us with PH thought we’d never get to have, there are some things about the experience that will be different for us than it would other college students.<br />
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The first PH conference I went to, I was just sixteen years old and I sat in on the ‘PH Goes to College’ panel, wanting to get some tips on how to deal with the stress of college and my disease at the same time. The students on that panel had some wonderful advice such as choosing classes later in the day so you’re not waking up super early, get in contact with disability services, e-mail your teachers before you meet them to tell them about yourself and not over-scheduling yourself when it comes to classes and after school activities. The only thing I wished had been different about the panel was their array of colleges. Everyone on that panel chose to go to a four year university – some even lived in dorms!<br />
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Seeing all these young adults up there, some going to Berkley and some even going to college out of state – it gave me unrealistic expectations for myself. I felt that if I went to community college that I wouldn’t be doing enough, that I wouldn’t be good enough. If they can go to a four year with PH, why can’t I?<br />
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PH and its symptoms are different from person to person. The amount of stress someone’s body can take is going to be different than yours. I had to remind myself that, and tell myself that at least I was going to college because there are some PH patients who can’t even get out of bed. So if you’re sitting there, thinking about going to college but not sure if you can handle the huge campus of a four year, I want you to know that community college is an option and it does not make you any less of a college student if you go.<br />
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Some of the best things about community colleges are its smaller campuses; so your classes won’t be too spread apart and the class sizes are smaller so your teacher will actually know you. When you get into a class of 500, the teacher isn’t going to know you or your health, which means, if you miss a day and need notes from that day, they probably won’t even realize you were gone. I was worried about dorm rooms in college. What if my roommates are up too late? Staying up late and not getting enough sleep has a tendency to put me in a tired mess when it comes to my PH. What if my dorm mates got sick? I shouldn’t be around that. Staying at home was the option I chose and I don’t regret it for a minute. So I don’t get the ‘dorm experience’, I can just have my friends sleep over on the weekends if I want that.<br />
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One thing I noticed was how much cheaper it was than a four year. Sadly due to medical issues, I had to withdraw from classes last semester. Imagine paying all this money and then not even being able to finish the course? I lost money last semester, but not nearly as much as I could’ve.<br />
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Because my health was still a problem by the time this semester rolled around, I am taking this semester off and it kills me. College makes me feel normal. I’d get up in the morning, get dressed and go to classes, hang out after school, come home and do homework. It gave me something to do and it made me feel like I was actually doing something with this life that my parents and I have fought so hard for. Sitting at home all day, not only is it boring but it makes me feel like I’m wasting the precious time that I have. I know that its not my fault and I know that it doesn’t make me some lazy person but I hate it when people ask me how classes are going because I have to answer with, “Oh I’m taking a semester off.” And I worry that I sound like one of those college kids who just got lazy or flunked out so they aren’t going to school this semester. If you are in this situation too, we have to remind ourselves that we are doing the best that we can. The standards for us are going to be a little different and there are going to be times when we have take breaks from college. Yes it means getting our degree later, but at least we are working towards it.<br />
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College can be a bit crazy and stressful, but it can also be so much fun. I’ve met a lot of great an amazing people through college and I’ve learned so much. I’ve had amazing experiences and gotten involved in a great club after school. (I did not do more than one club at a time due to stress and activity level). Just take it slow, remember that you don’t have to get everything done at once and that you’re on the right track.Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com2tag:blogger.com,1999:blog-2528375130116935800.post-37950970594213438062014-02-28T12:12:00.002-08:002014-02-28T12:36:29.669-08:00Get Ready For Rare Disease Day!<h3>
<span style="font-family: Arial, Helvetica, sans-serif;">
By Kimberly Smith, PHA Intern</span></h3>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 200%;">February 28<sup>th</sup> is </span><a href="http://www.rarediseaseday.org/" style="line-height: 200%;">Rare
Disease Day</a><span style="line-height: 200%;"> and
it’s time to celebrate! Rare Disease Day was established in 2008 by</span><a href="http://www.eurordis.org/" style="line-height: 200%;">
EURODIS</a><span style="line-height: 200%;"> (Rare
Disease Europe) and its Council of National Alliances, and is celebrated
annually on the last day of February. Rare Disease Day was created to raise
awareness and advocate for rare diseases that many people are unaware of, but
that so many in the world are affected by. Events are held in countries
throughout the world, from here in the United States to Spain, Japan, and
everywhere in between! Many people use this day as an opportunity to raise
their voices about rare disease and go to their local politicians and advocate,
and events are happening at State Houses across the country, sponsored by the </span><a href="https://www.rarediseases.org/" style="line-height: 200%;">National
Organization for Rare Disorders</a><span style="line-height: 200%;">
(NORD).</span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 200%;"><br /></span>
</span><br />
<div class="MsoNormalCxSpMiddle" style="line-height: 200%;">
<span style="font-family: Arial, Helvetica, sans-serif;">The
<a href="http://globalgenes.org/">Global
Genes Project</a>, a
non-profit organization dedicated to rare and genetic diseases, is also
celebrating Rare Disease Day with various events and activities dedicated to
raising awareness. Their “Wear That You Care” campaign allows participants to order,
for a small donation, a “Genes Ribbon” to wear along with their favorite pair
of jeans to show their support and raise awareness for rare and genetic
diseases. Click to learn more about the Global Genes Project and their <a href="http://globalgenes.org/world-rare-disease-day/" target="_blank">Rare Disease Day events</a>. <o:p></o:p></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: 200%;">
<span style="font-family: Arial, Helvetica, sans-serif;">There
are so many ways you can celebrate Rare Disease Day! Here’s a few ways some
members of the PHA Community celebrated last year:</span></div>
<div class="MsoNormalCxSpMiddle" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; line-height: 200%; text-indent: 0.5in;">Last year on Rare Disease Day
Colleen went in for a haircut and decided to donate 12 inches of her hair to
Locks of Love! She had planned on donating it sometime in the future, and after
a little encouragement from her hairdresser, she decided it would be a great
way to mark the day. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; line-height: 200%; text-indent: 0.5in;">Rachel made cupcakes with names
of rare diseases on them to celebrate last year. Delicious!</span></li>
</ul>
</div>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 200%;">How
will you celebrate Rare Disease Day this year? Visit </span><a href="http://www.rarediseaseday.org/" style="line-height: 200%;">www.rarediseaseday.org</a><span style="line-height: 200%;"> to find events happening near
you! </span></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMULVKnPF86tlmfW1vMxRG-X3_ITYXYuYMUbxt9rQ7TIWbB-7Jy6XGsHST9lJqmyyzjG7g3mHs0eT93SIuIQ7TgzHaw21eUCL7hIykN66d0idXk0yqDBu3dzmjChAt-Ucqu59PzzSTTSc/s1600/rare+disease+day+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMULVKnPF86tlmfW1vMxRG-X3_ITYXYuYMUbxt9rQ7TIWbB-7Jy6XGsHST9lJqmyyzjG7g3mHs0eT93SIuIQ7TgzHaw21eUCL7hIykN66d0idXk0yqDBu3dzmjChAt-Ucqu59PzzSTTSc/s1600/rare+disease+day+2.jpg" height="106" width="200" /></a></div>
<div class="MsoNormalCxSpMiddle" style="line-height: 200%;">
<span style="font-family: "Times New Roman","serif";"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-23296337423582713652014-02-13T20:35:00.002-08:002014-02-13T20:36:52.454-08:00Day of Love!<h3>
By Kiara Tatum</h3>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpv_9ysp2P0ygB9bmfsey4g26QhXLcx5qsEyb3TEJ-P2CcqRGqYBZKXHiblDS_MbkeFfI9jHwpYGXxm4ttOwQ142wDAizN5-YaFkx0qYMuVYT0LGY2cIDLJYDMKiX4sz0aDX_h_ohnN_w/s1600/Corbis-YN002125.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpv_9ysp2P0ygB9bmfsey4g26QhXLcx5qsEyb3TEJ-P2CcqRGqYBZKXHiblDS_MbkeFfI9jHwpYGXxm4ttOwQ142wDAizN5-YaFkx0qYMuVYT0LGY2cIDLJYDMKiX4sz0aDX_h_ohnN_w/s1600/Corbis-YN002125.jpg" height="134" width="200" /></a></div>
It’s Valentine’s Day and everyone, whether you are anti-Valentine’s Day or pro Valentine’s Day, will be celebrating somehow. This can be hard time for those with PH and single because it’s not so easy to feel free to love someone when you are coping with PH. And those who are in a relationship may not have enough money to afford a gift for their love one. PH is a rather expensive illness to treat. So have three tips for the singles and for the couples.<br />
<br />
<b>Single Phriends</b>:<br />
<br />
<ol>
<li>Go out with your single friends. Maybe go bowling or catch a movie together. Celebrate being single with other singles.</li>
<li>Stay home with your family. Sometimes going out on Valentine’s Day is too much because there is red hearts, roses and chocolate everywhere you turn. So just hang out with family or invite some single friends over to spend time with them.</li>
<li>Take a chance and go out on a blind date. Use those newest dating apps and find someone who’s single and meet up. You never know, the day of Love can be a great day to find your true match.</li>
</ol>
<br />
<b>Valentine’s on a Budget</b>:<br />
<br />
<ol>
<li>Have a picnic dinner indoors. Make a wonderful dinner for you and your love one. Spread out that picnic blanket on the floor and sit on the blanket and share a cooked meal together.</li>
<li>Write a love poem or love letter to that special someone. Sharing your thoughts and feelings this special day will make that someone special fall in love all over again with you.</li>
<li>Take your love one to McDonald’s. Seriously, I hear that McDonald’s is setting up Valentine’s Day seating with candlelight dinners. That’s sure to fit into anyone’s budget this Valentine’s Day.</li>
</ol>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8MvrJec1t-KVCsxkfA_46o9GC8yHYE0Pe-il7vqv2j_UaugFRh14MXOk6IR8GXQDoZ6lYtUwiZsZRCjIcLChJbycqZvwSwnyMe8mrqfxZoGGvToXTI69Sr8ikymkbA283mSuQtiOlEWE/s1600/Corbis-42-27695154.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/AVvXsEh8MvrJec1t-KVCsxkfA_46o9GC8yHYE0Pe-il7vqv2j_UaugFRh14MXOk6IR8GXQDoZ6lYtUwiZsZRCjIcLChJbycqZvwSwnyMe8mrqfxZoGGvToXTI69Sr8ikymkbA283mSuQtiOlEWE/s1600/Corbis-42-27695154.jpg" height="132" width="200" /></a></div>
These are just some of my thoughts to share with the singles and the couples this Valentine’s Day. You can find other ideas all over the Internet. Everyone have a wonderful day full of love from friends and family.<br />
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-34690273478755595022014-01-29T12:22:00.000-08:002016-10-30T00:57:35.188-07:00I Can't Believe They Said That!<!--[if gte mso 9]><xml>
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<b>I Can’t Believe They Said That!!!</b><o:p></o:p></div>
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From one patient to another, we have all had that moment
when we think to ourselves, “I can’t believe they said that!”<span style="mso-spacerun: yes;"> </span>Sometimes it is a stranger at the grocery
store, a coworker or the naïve family member.<span style="mso-spacerun: yes;">
</span>Normally the closer the person is to you the more it hurts and the
longer it consumes your thoughts.<span style="mso-spacerun: yes;"> </span>It is
very difficult for others to understand what life is like living with a serious
medical condition.<span style="mso-spacerun: yes;"> </span>The purpose of this
post is for you to share with those most involved in your life.<span style="mso-spacerun: yes;"> </span>My hope is that it will be a gentle guide to
help the communication between you and them.<span style="mso-spacerun: yes;">
</span>The following guidelines pertain specifically to Pulmonary Arterial
Hypertension (PAH).<o:p></o:p></div>
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What NOT to say…</div>
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<ul>
<li><i>“You don’t look sick.”</i> Just because we do not look sick
does not mean that we are not feeling poor.<span style="mso-spacerun: yes;">
</span>This disease is a microscopic internal struggle between the heart and
lungs.<span style="mso-spacerun: yes;"> </span>PAH affects millions of tiny
blood vessels that branch off from the larger pulmonary artery that is
connected to the heart.<span style="mso-spacerun: yes;"> </span>Every breath and
heartbeat requires more energy for a PAH patient than for a healthy
person.<span style="mso-spacerun: yes;"> </span></li>
</ul>
<ul>
<li><i>“It’s not that bad.” </i> A patient struggles regularly to
perform daily tasks that would otherwise be simple.<span style="mso-spacerun: yes;"> </span>This is incredibly frustrating and an
emotional battle.<span style="mso-spacerun: yes;"> </span>We struggle with acceptance
of the limitations that are placed on us by this disease.<span style="mso-spacerun: yes;"> </span>We struggle with the social embarrassments of
needing to take breaks because of lightheadedness or turning blue when
performing a task that requires an increase in oxygen.<span style="mso-spacerun: yes;"> </span>It is discouraging to be meet with
non-sympathetic statements.<span style="mso-spacerun: yes;"> </span></li>
</ul>
<ul>
<li><i>“I know how you feel.” </i> You do not know how we feel so
please don’t say so.<span style="mso-spacerun: yes;"> </span>Our high blood
pressure feels very different than the more common type of high blood
pressure.<span style="mso-spacerun: yes;"> </span>We experience side effects
from medications you have never taken.<span style="mso-spacerun: yes;">
</span>Multiple hospital stays, doctor visits and medical tests are physically
draining.<span style="mso-spacerun: yes;"> </span>The way this disease affects
us is individualized and it is impossible for you to know how we feel.</li>
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What to say…<o:p></o:p></div>
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<li><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><i>“I believe that you are sick.”</i> Instead of telling someone that
they don’t look sick, you should believe them.<span style="mso-spacerun: yes;">
</span>The way PAH affects the individual fluctuates day to day.<span style="mso-spacerun: yes;"> </span>On the worse days it is nicest to know that
you’re believable.<span style="mso-spacerun: yes;"> </span>Denial of the impact
of this disease is only harmful.<span style="mso-spacerun: yes;">
</span>Conveying that you believe the patient is sick allows us to feel that
you are willing to fight this with us.</li>
<li><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><i>“I’m sorry this is something you are going
through.”</i> Sympathy: the perception,
understanding, and reaction to the distress or need of another human being.<span style="mso-spacerun: yes;"> </span>Telling us “It’s not that bad” while meant to
be encouraging is actually naive.<span style="mso-spacerun: yes;"> </span>This
disease is bad, life or death bad.<span style="mso-spacerun: yes;"> </span>To be
encouraging say, “I’m sorry this is something you are going through.”<span style="mso-spacerun: yes;"> </span>It conveys sympathy to our situation. <span style="mso-spacerun: yes;"> </span>It is encouraging to know that our pain
saddens you.<span style="mso-spacerun: yes;"> </span></li>
<li><span style="mso-bidi-font-family: Cambria; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Cambria; mso-fareast-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"> </span></span></span><i>“Help me understand.”</i> While you may not know how the
patient feels, you are able to be more supportive if you gain understanding of
PAH.<span style="mso-spacerun: yes;"> </span>Listen to us talk about how
diagnosis changed our life.<span style="mso-spacerun: yes;"> </span>Learn about
the science of the disease.<span style="mso-spacerun: yes;"> </span>And one of
the best things you can do to understand is attend a patient support group
meeting.<span style="mso-spacerun: yes;"> </span>A few of my friends went with
me in college and I clearly remember how enlightening it was for them and how
supported I felt.</li>
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This is just the tip of the iceberg of what not to say and
what to say to a PAH patient.<span style="mso-spacerun: yes;"> </span>Please add
your own in the comment section below.<span style="mso-spacerun: yes;">
</span>Remember share this article with your family and friends!</div>
<!--EndFragment-->Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-2528375130116935800.post-54013146885710689312014-01-08T08:00:00.000-08:002014-01-08T08:00:06.423-08:00Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 2<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi_MHxsAvBcwc2M3_fx6yMKxvm0AsDgipv6tS-MH2AFvnOCsTdR52NrRYCIwUiJvLpO6fGkCP0X7WNTWau-9L3edMANKvFIRu3bfFcOT3cUuwannkTpRz82EUpIppEzpdEt7abHeNNGNb1/s1600/KatieTobias.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/AVvXsEgi_MHxsAvBcwc2M3_fx6yMKxvm0AsDgipv6tS-MH2AFvnOCsTdR52NrRYCIwUiJvLpO6fGkCP0X7WNTWau-9L3edMANKvFIRu3bfFcOT3cUuwannkTpRz82EUpIppEzpdEt7abHeNNGNb1/s1600/KatieTobias.jpg" height="319" width="320" /></a></div>
On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. To mark the anniversary, I decided to retrace my steps through my old college campus where I was "knocking on death's door." Now that I am "better than ever before," I wanted it to sink in just how far I have come. What follows is part 2 of my commemorative trip down memory lane. To read part 1, see yesterday’s entry.<br />
<br />
<b>9/6/13</b><br />
<i>From here, I go to the art building where I "inexplicably lost consciousness." This eighth passing out episode is where the "official" diagnosed PH journey begins. I keep realizing I never counted those years pre-diagnosis until this anniversary ...</i><br />
<i><br />I DID IT!!</i><br />
<br />
<i>The hill that was almost literally the death of me was barely an issue. Campus is quiet; no one else is around. Total "de-ja-vu" feeling – remembering how I was walking right along the concrete columns, how I grabbed onto every other one, then every one to support myself. I was SO out of breath. Then it all happened so fast: unbelievable burning in my chest, black spots, couldn't hear my friend Cassandra finish her sentence. Then, the world went black.<br /> </i><br />
<i>By the way, I'm writing this part while sitting on a bench right where I passed out.</i><br />
<i><br />Cassandra must have called 911. When I woke up, I was on my back surrounded by medics. I remember being lifted into the back of the ambulance but being so out of it. By the time we got to the E.R., I felt fine. Yet again, I was frustrated and scared, but physically, I felt fine. I let them do blood work but refused any more tests. I had them all done before, and they always came back normal. I couldn't stand to hear another, "I don't know what's wrong with you." <br /> </i><br />
<i>This all happened the Thursday before Labor Day. The local cardiologist did a T.E.E. (Transesophogeal Echocardiogram) on Friday. The following Tuesday, we were at an out-of-state PH center where a right-heart catheterization was scheduled for the following week. In the meantime, they sent me home on continuous oxygen. <br /> </i><br />
<i>After the cath, I passed out on my way to the bathroom. As I regained consciousness, I was being wheeled into the I.C.U. where I stayed for about a week. And we were off and running. (Wow, poor choice of words, but walking at all sure felt like running.) <br /> </i><br />
<i>A lot more is coming to the surface, but it’s almost time for me to take Tyvaso. I need to start walking back to my car. I feel physically really good. I'm glad I did this. Sitting in the spot where I nearly died, feeling calm and conscious. My breathing is fine, and it's beginning to register just how far I've come.<br /> </i><br />
<i>Tore out a journal page, wrote a note and left it on the bench. I wanted a symbolic way of acknowledging the fact that I almost died in this spot.</i><br />
<br />
<i>The note said:</i><br />
"Pulmonary hypertension – A rare, progressively debilitating lung disease that causes right-sided heart failure. Arteries in the lungs are constricted, making it increasingly difficult for the heart to pump blood to the lungs. The whole body is oxygen deprived. You are CONSTANTLY short of breath. A handful of medications can slow the progression, but today there is no cure. At some point, lung transplant may be an option for some patients.<br />
<br />
I passed out – right here – seven years ago. A few days later, I found out I had had PH for the past three years and was now ‘knocking on death's door.’ I was 19 years old. Today, I am officially considered a long-term survivor. Please go to www.PHAssociation.org.” <br />
<br />
<i>By walking away, I was symbolically leaving the past behind. And if anyone does find it, it's a little bit of PH awareness, too. I felt very "light" walking away from that spot, very free. Classes started letting out, but I didn't turn around to see if anyone found my note. I got what I came for. </i><br />
<i><br />I can already hear that nagging, anxious voice saying, "Someday, you'll be back at that point. The disease WILL progress, eventually." But even if just for tonight, can that voice PLEASE be silenced? Let me just relax, physically and emotionally. </i><br />
<i><br />I'm hoping that having officially reached this milestone, I will be able to keep "getting to know myself" beyond just "the girl with PH." I hope it will get easier as time goes on, provided I remain stable like I am now, to emotionally deal with, accept and move on from everything I have been through. I've been in "strictly survival mode" for so long. I'm only just beginning the emotional healing process.</i><br />
<i><br />The past 10 years have been one hell of a ride in every way imaginable, and then some. I still can't believe this: I AM a "Long-term Survivor." </i><br />
<i><br />I am a PHighter.<br />I am a Survivor.<br />I am PHenomenal.</i><br />
<i><br />We ALL are.</i><br />
<i><br />PHenomenal Hope. PHenomenal Courage. Every breath. Every day.</i>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com2tag:blogger.com,1999:blog-2528375130116935800.post-78482876654911885372014-01-07T08:00:00.000-08:002014-01-10T06:09:04.283-08:00Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 1<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM5gwuvsfMTqaO9AMDF8mp88QPlVol-GlxkjU5M7ex06g3c9iB3_djotN8spYm3M0bY5nWqGvenXe-tKA3cs5UTXspn3zFGfcCbb3M-ok6AKWAxRHj33SPODijqt4f5vInejfpBrkrHn9a/s1600/KatieT_Blog1.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/AVvXsEgM5gwuvsfMTqaO9AMDF8mp88QPlVol-GlxkjU5M7ex06g3c9iB3_djotN8spYm3M0bY5nWqGvenXe-tKA3cs5UTXspn3zFGfcCbb3M-ok6AKWAxRHj33SPODijqt4f5vInejfpBrkrHn9a/s1600/KatieT_Blog1.jpg" height="240" width="320" /></a></div>
It started out slowly, getting out of breath going upstairs or running laps in gym class. They said I had asthma. A year later, I began passing out. They said I had epilepsy even though my "unexplainable losses of consciousness" didn't fit the definition of a seizure. Eventually, I was gasping for air walking from one room to the other. After three years, I was finally correctly diagnosed with PH. I was 19 at the time and was "knocking on death's door."<br />
<br />
That was seven years ago. I went from "don't get your hopes up" to embracing my "new normal." Three years later, the disease progressed. In just five months' time, "stable" was replaced with "heart failure" and "borderline kidney failure." Then, after transplant evaluations, I improved to "better than ever." Of the 12 drugs currently on the market, I've been on seven.<br />
<br />
On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. I decided to revisit the college campus where I was "knocking on death's door." I wanted to retrace my steps – and the many stopping points along the way – from the psychology building up to my dorm. Everyone else's five-minute walk became my 45+ minute ordeal. I also planned to walk from my dorm to the art building where I passed out for the eighth time. This was finally the turning point that brought us to the PH diagnosis. Now that I am "better than ever before," I wanted it to sink in just how far I have come. I was also hoping to quiet the lingering fear that this stable and, dare I say it, good "breath of fresh air" is all just a temporary, albeit wonderful, dream. It worked.<br />
<br />
<div style="text-align: left;">
What follows is part one of the journal entry I wrote as I walked that day:</div>
<b></b><br />
<b></b><br />
<div style="text-align: left;">
<b>9/6/13</b></div>
<b></b><br />
<div style="text-align: left;">
<i>Long-term survivor TODAY. Weather is perfect.</i></div>
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<i>In the bottom floor lounge of the psychology building writing this. The elevator was my first rest stop. Most days I was able to at least make it that far, still feeling okay. Well, here we go …</i></div>
<div style="text-align: left;">
</div>
<i>My second stop: right outside the front doors. I'm actually SHOCKED right now how short that distance felt. My next stop, a tree in the parking lot across the street, doesn't seem far at all.</i><br />
<br />
<i>I remember leaning on this tree GASPING for air. If I thought about it, I had my phone out ahead of time so that every time I had to stop, I could pretend to be texting. This tree isn't even half way yet, and many times I would be ready to cry already. I did notice a gradual incline as I crossed the street this time.</i><br />
<br />
<i>Crossing the parking lot, which is slightly uphill, was definitely my farthest distance between stopping. It took me under two minutes to reach the big rock across the lot. Felt my heart working a little faster, but I was only S.O.B. for a few seconds. This is the halfway mark. Again, I would be GASPING for air at this point. Still being told I had only "minor" health issues. Looking at these distances now, seven years later, its like, "WOW." They seem so short. It’s hard to believe. This reaction is exactly what I was hoping for. Next, I go around the cafeteria to a picnic table alongside the building. From this point on, it’s all steeply uphill …</i><br />
<i></i><br />
<i>The picnic table was gone. I just kept walking. Definitely more of a workout this time. The hill got really steep. Some steps, too. Sitting in front of the dorm now, just long enough to write these few lines, and my heart rate and breathing are already coming back to normal. By this point, I would have been BEYOND EXHAUSTED. My roommate, Kelly, said I was "the soundest sleeper she ever knew." I never realized how completely exhausted I always was by the time I got back to the dorm room. </i><br />
<i><br /></i>
<i>I can't tell you how many times I felt myself starting to pass out on the way to the English building (uphill from the dorm, a lot of steps into the building). I would tell myself, "Just make it inside. Don't pass out now on the street. More people will see you in the building." We still had no idea why I was "inexplicably losing consciousness." That class is all a blur. I was too worried about staying conscious to care about Shakespeare.</i><br />
<i><br /></i>
<i>So much is going through my mind. Above all else is the realization that my main thought right now is not: "OH MY GOD, I CAN'T BREATHE!" Or how badly my chest burned with every inhale, like my insides were being torn apart. Or how dizzy I was. Every step, every breath felt like it would be my last.</i><br />
<br />
<br />
<a href="http://phagenerationhope.blogspot.com/2014/01/KatieTobiasReflectionsPage2.html"><b>Check out tomorrow’s blog post to see how my journal entry concludes.</b></a> Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-32482832356538589272014-01-02T22:00:00.003-08:002014-01-08T07:48:11.932-08:00The Unpredictable Road Ahead<h3>
By Kiara Tatum</h3>
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It’s the New Year 2014, and we made it through the obstacles of 2013. However, it doesn't mean that 2014 is guaranteed to be easier than the previous year. <i> Life is a journey</i> or perhaps it is more like a cross country road trip with family and/or friends, and you will have great moments and memories along the trip. However, you will also run into bumps on the road. Whether it’s a flat tire, running out of gas, overheating of the car, disagreements along the way, it’s definitely not an easy trip. Having PH makes our journey a little bumpier than others.<br />
<br />
2013 was a very difficult year for me. I was grieving a loss of my good friend, who died from PH complications. I had built up anger, and I was feeling very depressed and hopeless. Also, my family grew with a brother-in-law and his family as well as a new baby nephew. I started teaching two classes a semester at the local community college, so I had stress from work. I started dating which is another posting in itself. I was even hospitalized at the beginning of the year. And I was involved in some conflicts that I was getting into throughout the year because of my anger and being on that emotional rollercoaster. <br />
<br />
But I learned a few lessons in 2013 that will help me get through 2014. I would like to share some of those things with you which you may already know or practice now. <br />
<ol>
<li><b>Let go of the anger</b>. I’m so tired of being angry about having PH. I want a life that is not controlled by PH, a PH <i>free</i> life, but I know that doesn't exist for me at the moment, so I have to learn to live within the bounds of PH. By giving up PH’s control over my life, I see that I have accomplished more this year than I thought would have been possible. I've taught two classes each semester, spring 2013 and fall 2013 despite being hospitalized in January 2013 just before my first time teaching two classes a semester. I spent lots quality time with my family; I went to Boston for PHA on the Road; I spent time with friends near; and talked to friends afar. I think I have spent enough time being angry about PH.</li>
<li><b>Be content in every situation</b>. I was reading a devotional one day, and it talked about being content in every state. It's a hard lesson to learn, but I'm learning it. Whether I'm spending time with my family or lying in a hospital bed, I will be content. No matter what the circumstance is, I have to learn to be content. No more wanting something different, no more anger, and no more hopelessness.</li>
<li><b>Know you’re never alone</b>. As a patient or even as a caregiver, family or friend of a PH patient, we take on a lot of the burden all by ourselves. Situations become more difficult for anyone to handle all by yourself. There was a moment when I was so low that I didn't know what to do, so I prayed and then called a friend. She talked to me, and then after work she came to my house and stayed with me for a while. We had dinner out and talked about what I was going through. Through my faith, my family, and friends, I knew I wasn't alone and that I was loved by a lot of people.</li>
<li><b>Have <i>ME</i> time</b>. I realized that I need on a daily basis at least 15 minutes to just be with myself. I take that time to get away from others, my cell phone, Facebook, and television. I take that time to either write in my journal or read a devotional. Make time to be with yourself. This can be a time for meditation, a hot bath, or whatever you need to do for yourself to relax, renew yourself, and refresh from the day.</li>
<li><b>Be hopeful</b>. Stop faking being hopeful; just be it. Throughout the year, I was trying so hard to be hopeful, but I couldn't feel it inside. I was so hopeless about my situation of having PH, not being able to have a child of my own, and feeling lonely. But as I said before, I'm never really alone. I'm seeing that my family is growing, I have so much love in my life from others who care so deeply about me. I let the hope of a cure, finding love, and so much more fill me up, so that I can make it through each and every day. </li>
</ol>
These may help you get through 2014 when you come across those speed bumps on the road. I have been able to get through those challenges, troubles, storms, obstacles along my journey to make it through 2013, and I am going to try to make it through 2014 despite PH. Have a wonderful New Year!!!<br />
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/00304485468279330079noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-29531216175865823412013-11-21T08:20:00.000-08:002013-11-26T13:13:20.667-08:00In Spite of PH<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjABnPLUhqJYT_e1MaIuYelNxHxv-aRNbbh7eeulfyjTz1jSPNFujUj1JEX5Qfi_BN9Y0BIqoMCaWJN0CCDgKB_evkmAtoGBjtxzlgds2R_ApjDWjl27agGsToiSgQ8xRPTu_EPp4pELJtT/s1600/parade.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjABnPLUhqJYT_e1MaIuYelNxHxv-aRNbbh7eeulfyjTz1jSPNFujUj1JEX5Qfi_BN9Y0BIqoMCaWJN0CCDgKB_evkmAtoGBjtxzlgds2R_ApjDWjl27agGsToiSgQ8xRPTu_EPp4pELJtT/s320/parade.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kevin and Karen poses with some of their parade <br />
walkers after Marietta's notoriously hot and humid Fair Parade.</td></tr>
</tbody></table>
<div style="font-family: Helvetica; font-size: 12px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>It’s November and I am fired up. Is it because it’s PH awareness month? Possibly. Is it because I have learned a lesson in my life with PH and I am excited to keep going from here? Maybe. Final question, is it because I feel the last year has taught me something great, and I am burning to share it with the world? Well... it is a combination of all three, really. A year has passed since my first awareness month, and I have learned so much in the last year; talked to so many people; and I hope, helped one or two people along the way.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>In January 2013 I decided that I was going to run for office in my hometown. It is something that I have always wanted to do, and I figured “why not now?” I am feeling better than I have in years, and I figured that if nothing else was learned, I would need to keep myself organized for my health, and to keep my PH from getting the better of me. At the end of the campaign though, as I look back at it, I realize I did something else entirely. As my wife, Karen, and I reviewed everything the other night, as we talked to our friends, the campaign volunteers, and the city officials who helped me prepare for my run for office, we came to a startling conclusion that hit us over the heads after my friend and fellow PHer Teresa Hayes stated “You live your life in spite of PH.” That’s when it hit me, she is right. Karen and I didn’t let PH rule us this year like it did last year; We lived our lives in spite of it; we did not let PH guide us, we controlled it, we took this “new normal” and just made it our “normal.” I didn’t let my pulmonary hypertension deter me, or hold me back. I actually used it as a springboard to start the conversation, I used my PH as the motivation to do this, to live this year with purpose and drive, and I didn’t realize I had done it until Teresa made her observation, and until Karen informed me that I had, in fact, done just that. Not at any point in the last year did we let PH deter us. If I had reservations about anything, Karen helped me find a solution that was beneficial to us both. I walked, I talked, I attended every event I could fit into my schedule, and I did it on my terms, in my way, making PH work for me. </span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>I understand that for every one of us, something may be different, that what works for me or you may not work for someone else, but it is possible to redefine ourselves with PH, and not let PH redefine us, at least not in a negative light. I have heard patients say that they feel different now, that the new normal has changed them. In some regards that’s true. Perhaps it’s a quiet fishing day now instead of a canoe trip on the lake. Perhaps its a relaxing car ride when before it may have been a bicycle ride. But you don’t have to let pulmonary hypertension change YOU; who we are at the core of our beings. That person who laughs; that person who enjoys a good book in the backyard; that person who strives to make their community better, they still exist. The only thing that changes is the means that we use to achieve our ends. You can still do what you want to do, you can still strive for something more than the sum of your parts. We, as chronic patients, have to deal with a myriad of things that “normal” people do not. That doesn’t mean we can’t make the disease work for us. I already see it in so many patients; people who have taken PH, and found a new cause, a new purpose, a new way of living that doesn’t restrict them. It empowers them to work for our community, and to work for a common cause. As patients in general go, we can do the same thing, but for our families, for our communities, and for ourselves. We don’t have to let PH define us, we can define it, and determine what this disease is to us. Is it the end of our world, or just a new chapter in our lives that we already have so much experience living? Is pulmonary hypertension a reason to curl up, or a reason to redefine ourselves and our purpose on this Earth? I think that it can be just that, a redefinition of not who we are, but what we are here to do.</span></div>
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</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxJn8SQE8XpwkBgcXpmHk5Zo-9S844sy1ahnO7m-ST49-h5daAfKfYhyphenhyphenARGxSF3PE5La2eTLi9s_qQQ-zNJ0XOgsblk-M_3_jnonRGQ0Jx3jj35r_ietQlndUwhupye-of40htZZvD6lsC/s1600/kpvh.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxJn8SQE8XpwkBgcXpmHk5Zo-9S844sy1ahnO7m-ST49-h5daAfKfYhyphenhyphenARGxSF3PE5La2eTLi9s_qQQ-zNJ0XOgsblk-M_3_jnonRGQ0Jx3jj35r_ietQlndUwhupye-of40htZZvD6lsC/s320/kpvh.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Karen and Victoria play on the front porch. Life with PH<br />
doesn't mean changing who we are, it just means altering<br />
how we do things. Sometimes if a bike ride is not possible,<br />
it's time to break out the bubbles for our family's<br />
outdoor night.</td></tr>
</tbody></table>
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<br /></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>I have learned so much about myself in the last year and how to live with pulmonary hypertension. This disease motivated me to throw my life into another gear, to do what I could with what I had and strive to make my world a better place to live. I used PH to start the conversation, and then to springboard from it into how we were going to make my town a better place to live. I took so much motivation from my fellow patients who have redefined themselves, and do not let this disease rule them, they rule it. We have to live with pulmonary hypertension, that is an unfortunate fact, but I believe we each can let PH rule us, or we can rule it. This last year, I learned how to not just live with PH, but how to make it work for me, how to use it, instead of letting it use me. I know one thing for certain, if I can do this, without realizing it, then there are so many more of you out there who can do this, too. We all need to find the exact path that works best for us. That is why I am fired up this November, because I have learned that I made my entire year an awareness event, without even trying. I may have lost my election (by 275 votes in a city of 15,000), but I feel I did so much more than just run a campaign, I feel I did so much more than learn to live with this disease; I learned how to redefine myself, I learned how to live my life in spite of PH, and I have learned that anything is still possible, we just have to learn for ourselves how to achieve it. </span></div>
Anonymoushttp://www.blogger.com/profile/08021317754400514547noreply@blogger.com0tag:blogger.com,1999:blog-2528375130116935800.post-60655450187611690152013-11-06T07:35:00.000-08:002013-11-06T07:35:00.413-08:00Art & Coping: Relieving Stress Through Creativity <!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: #8064a2; mso-themecolor: accent4;">Mimi Jordan </span></b></div>
<div class="MsoNormal">
“With PH, you can get a sense of feeling not as worthwhile;
art has given me a feeling that I can still do things. It is something you can
share with others, art of any type is a creative work, and is a positive and
helpful thing to do.” </div>
<div class="MsoNormal">
Mimi Jordan has found a way to turn the hardships of living
with pulmonary hypertension into something positive, art. While Mimi has always
been an artist, due to PH and limiting physical activity, she has found more
time to focus on her painting. Mimi paints on average four-five hours a day,
five days a week, or whenever he schedule permits. She states, “It is easy to
become negative about the things you cannot do living with PH, you need to find
some way to cope in a positive way.” Painting, for Mimi, has become a
meditative experience and an important part of her PH. She believes, “you need
to find something positive, and creative, art has given me a feeling that I can
still do things.”</div>
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Unfortunately, due to her physical limitations, Mimi is
unable to visit museums or art galleries; however she enjoys browsing various
art websites online such as <a href="http://oneartworld.com/">One Art World</a>
and <a href="http://www.saatchionline.com/buy-art/for-sale">Saatchi Online</a>.
In addition to this, Mimi has a site of her own! Take a look at <a href="http://westernpainter.fineartstudioonline.com/">Mimi’s paintings</a>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: #8064a2; mso-themecolor: accent4;">BreAnn McFarland </span></b></div>
<div class="MsoNormal">
Similarly to Mimi, BreAnn has also found comfort in art
work.<span style="mso-spacerun: yes;"> </span>Always being interested in art,
BreAnn quickly realized how great a coping mechanism it was for dealing with her
PH, and migraines post lung transplant. As a child, BreAnn possessed the talent
for being able to draw something by just looking at it. After diagnosis, she
was no longer able to keep up in school and had to switch to homeschooling.
Fortunately, BreAnn was given the gift of a lung transplant that rid her of PH,
unfortunately, the side effects of the medication she was placed on were
chronic migraines. In the process of enrolling into college, BreAnn needed an
activity that could get her out of bed and rid her depression. She soon
realized that school could not become a part of her plan anymore, and became a
full time crafter. </div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju5710kcy7BDZ9AnJlzeH1P_ihYjZkALCAuyWpKsk79s9PtrYwCnLHGrfZ9BziQYog2XKo4Zm3st7TBM0Fv6zNZuJdnHIzvYh1mZnMtSm9quOvAEcTwkUVbD1wL31sF6BEEPHN_7lFXzZ6/s1600/PH+Bracelet.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="107" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju5710kcy7BDZ9AnJlzeH1P_ihYjZkALCAuyWpKsk79s9PtrYwCnLHGrfZ9BziQYog2XKo4Zm3st7TBM0Fv6zNZuJdnHIzvYh1mZnMtSm9quOvAEcTwkUVbD1wL31sF6BEEPHN_7lFXzZ6/s200/PH+Bracelet.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">PH bracelet made by BreAnn</td></tr>
</tbody></table>
<div class="MsoNormal">
BreAnn makes stationary ranging from cards and boxes, to
gift bags and jewelry and even temporary tattoos! She is also an avid Photoshop
user. She states, “doing what I like to do every day gives me a reason to get
up. I love more than anything to make things for people.” Through crafting,
BreAnn has also acquired an online family from sites such as Facebook, <a href="http://www.papercraftplanet.com/">Paper Craft Planet</a>, and <a href="http://priscillastyles.ning.com/">Crafts digital art center</a> (CDAC). </div>
<div class="MsoNormal">
Although she would like to, BreAnn is unable to visit
museums or art galleries due to her lack of mobility caused by the migraines.
Even though she is unable to enjoy art in those ways, she expresses her
feelings on the benefits of creativity and art work. “You need some way to
express what you’re feeling creatively as a way to get your feelings out. Great
art has come from bottled up emotions. Art is not something you have to share,
but something that helps!” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: #8064a2; mso-themecolor: accent4;">Brandi Stickney </span></b></div>
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Although Brandi has always been interested in art, she more
recently has become interested in taking photographs both for herself and for
others.<span style="mso-spacerun: yes;"> </span>Upon diagnosis of PH two years
ago, Brandi realized that photography was something she was really good at, and
an activity of little physical demand. Brandi spends about 2-3 days a week, and
around 20 hours a week on her photography. She has found children her favorite
subjects to photograph because of their innocence and realness. Brandi states,
“it makes me feel like I can do something that is in my control, because I
cannot control the way I feel.” </div>
<div class="MsoNormal">
Brandi frequently enjoys visiting museums and looking at
other people’s art work to get inspired. For others who have not yet found that
perfect coping mechanism, she shares “having a hobby you really love gives you
a sense of control in an otherwise chaotic situation. It keeps your mind off of
the things you cannot do.” </div>
<div class="MsoNormal">
<br /></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com2