tag:blogger.com,1999:blog-55353383468687701402024-02-07T04:05:43.447-05:00Cryo-Lady-Cares......................Cryoglobulinemia VasculitisThe Maddening Maze of Autoimmune, Chronic and Rare Diseases
.CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-5535338346868770140.post-74779931548564164612014-10-22T10:22:00.004-04:002014-10-22T10:22:52.986-04:00<div style="text-align: center;">
<span style="color: blue; font-size: large;">I can't breath! Emotional Breakdown</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhSNHbSfj4t3U5RGHc7-DcHlNyNiFyboBs_iRunAK3z_zOZARi4kU7RcsnhNyFmdMUIq7i3ew_GyyR-8pvTuMa9pDvRQSUC5jyZxDoAG_kqtMzJP3_eghAGhSajimzv3RkvKZUZbEOTtT3/s1600/dreamstimefree_156908.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/AVvXsEhhSNHbSfj4t3U5RGHc7-DcHlNyNiFyboBs_iRunAK3z_zOZARi4kU7RcsnhNyFmdMUIq7i3ew_GyyR-8pvTuMa9pDvRQSUC5jyZxDoAG_kqtMzJP3_eghAGhSajimzv3RkvKZUZbEOTtT3/s1600/dreamstimefree_156908.jpg" height="217" width="320" /></a>Was it my mind or my body that fell into the abyss of no return? Was it both? What happened? Where did I go? It felt like I fell off the universe into a dimension of darkness I didn't know existed. Was it insanity, craziness, mania, hysteria, delusion? I could hear the voice of my husband but I couldn't find him in this place called hell. I frantically raced from room to room trying to escape the madness that was me. How do you run from yourself? Where do you go?You disappear from what you know as self and let all pain gush through ever pore of your body, mind and spirit. The darkness shattered all possibilities of rational as my body cried for help. I continued to get lost deeper and deeper into nothingness where there was no me, no us, no love just gut wrenching pain and loneliness.<br /><br />But why? Will anyone be able to explain to be why I broke? Modern medicine can't explain why I live with this rare disease, cryoglobulinemia. Is it the drugs, is it the disease, is it the prodigious amount of energy and discipline that it takes to keep my head above water to survive? Does living in survival mode for 16 years cause insanity? Or was it simply because I was outside in weather that dropped to 67 degrees? I have learned that my body cannot tolerate temperatures under 70 due to Cryo although most doctors won't agree with me. But I know for a fact that when I ventured outside that day my body became numb, my ears and head felt as if they would explode until I found the respite of the house just steps away. I made a mistake and took a chance that the drugs were possibly healing me. We want to walk away and pretend, even for just a brief moment that our bodies are not failing us when we live with chronic illness even if it is just for one day.<br />
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I was sitting on top of the mountain that I have been climbing for 5 1/2 years, finally getting to experience a piece of life that some would call normalcy. I was holding onto HOPE and the drug Rituxan to give we a piece of my life back that I desperately yearned for. But then the unexpected happen and I tripped and fell and when I fell I broken into a thousand million pieces. After the fall I woke up lost and shatter knowing that I had to put all of the pieces back together again like so many times in the past. It's so hard to start over again when the maze has no exit. I'd like to think that my nervous system was affected by the unexpected reaction to the weather, or was it a combination of illness and life, is it the drugs or maybe I was doing to much in my new reality and on overload? I don't know and no one will be able to tell me I'm sure but I'm grateful that my husband, my best friend and my children picked me up and after only 3 days of hell I'm here writing about what was.<br />
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<ul>
<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>Today I will be grateful.</i></b></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>Today I will dismiss my madness and focus on healing.</i></b></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>Today I will reach out and touch at least one person who is hurting in some way.</i></b></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>Today I will start again at the bottom of the mountain and focus on the peak.</i></b></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>Today I will only think positive thoughts and not dwell on my fall that shattered my spirit.</i></b></span></li>
<li><span style="font-family: Georgia, Times New Roman, serif;"><b><i>Today I will find the Creator inside of me, the light that guides me back to acceptance and peace. </i></b></span></li>
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<span style="color: blue;"><br />If you fall let someone pick you up if you can't do it yourself. </span><br />
<br />CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com1tag:blogger.com,1999:blog-5535338346868770140.post-70640380646192651222014-10-22T07:44:00.000-04:002014-10-22T07:44:45.289-04:00NEVER GIVE UP - EVER9-8-2012 Living in constant fear of dying<br />
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This morning I received a call from my oncologist telling me that my blood test for Cryoglobulinemia Vasculitis came back NEGATIVE. This means that the LAB TEST was unable to detect any Cryoglobulins in my blood. It does not mean there aren't any. It does mean they have reduced enough to give me a negative reading. And that is great news. I actually have had 3 incredibly awesome weeks and I feel like my body is getting stronger and healthier. I still don't know what tomorrow will bring with all the complications but for today I finally have made progress after living with constant fear for the last 3 years and living like I was dying.<br />
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Never ever did I feel I would think about tomorrow.<br />
Never did I think I would see normalcy of any kind.<br />
Never did I think I would see joy in my husbands eyes.<br />
Never did I think my body could recover.<br />
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So today I offer you a RAY OF HOPE for wherever you are on your journey<br />
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Never ever give up.CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-54190671007196106662014-10-21T16:50:00.001-04:002014-10-21T16:59:49.040-04:00Tweet Chat -CoRDS Registry<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8WB0iN3DJ0nnDvfBJMpd5bFEWyU2tEO2biBH4sJEUfjPX_jrNt7ny9U2A8hUxbs8Ba5SzMpIru-_eZ7gkxRnAdFuyzTaxw3bNnOkFvXOyA856HiZjWzpgBfv9RH3oQIy6t5CdpCuGWARK/s1600/CoRDS+logo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8WB0iN3DJ0nnDvfBJMpd5bFEWyU2tEO2biBH4sJEUfjPX_jrNt7ny9U2A8hUxbs8Ba5SzMpIru-_eZ7gkxRnAdFuyzTaxw3bNnOkFvXOyA856HiZjWzpgBfv9RH3oQIy6t5CdpCuGWARK/s1600/CoRDS+logo.jpg" /></a></div>
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<span style="font-family: Arial;">OLD POST OF 2012</span>
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<span style="font-family: Arial;">Liz and Natalie from CoRDS met with me a week or so ago and we discussed what I would like to share about myself and the Alliance for Cryoglobulinemia on their next tweet chat. After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers. Collectively we are larger that the patients of AIDS and HIV put together. That's allot of people living in isolation without answers on this lonely road to a treatment. There is no cure! Some may find treatment and together we can make it happen.</span></div>
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<span style="font-family: Arial;">We are meeting on tweetchat October 26th, Noon CST, to talk about the obsticales and challenges, our progress, and our accomplishments we face on our journey. </span></div>
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<span style="font-family: Arial;">Please join Natalie, from CoRDS, myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0.921569); color: #222222;"><span style="font-family: Arial;">This online Twitter chat hosted by<a href="http://info.wegohealth.com/HealthActivistRoundtable" style="color: #846ebe; text-decoration: none;" target="_blank"> Wego Health</a> will take place this Friday worldwide at 2pm-3pm Eastern Time in this online chat room using the hashtag #HaRoundtable ~> </span></span><b style="background-color: white; color: #846ebe; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; text-decoration: none;"><span style="color: purple;"><a href="http://tweetchat.com/room/haroundtable" rel="nofollow nofollow" style="background-color: white; color: #846ebe; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; text-decoration: none;" target="_blank">Chat Here!</a></span></b></div>
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CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-64109517644846973752014-10-21T16:50:00.000-04:002014-10-22T07:47:18.799-04:00<div class="MsoNormal" style="background-color: white; color: #222222; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt;">
<span style="color: #1f497d;">#RarePov VERY OLD POST FROM 10-10-13</span><br />
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<span style="color: #1f497d;">I tried to thank each of you on Twitter, but I wanted to say THANK YOU again (in unlimited characters) for the successful #raredisease #RarePov Tweetchat last Thursday. <u></u><u></u></span></div>
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<span style="color: #1f497d;">We intended to go for 30 minutes but the conversation lasted for more than an hour, past <span class="aBn" data-term="goog_276181692" style="border-bottom-color: rgb(204, 204, 204); border-bottom-style: dashed; border-bottom-width: 1px; position: relative; top: -2px; z-index: 0;" tabindex="0"><span class="aQJ" style="position: relative; top: 2px; z-index: -1;">5pm ET</span></span>. We engaged 163 contributors and potentially reached more than 302,000 twitter accounts (according to Tweetreach: <a href="https://tweetreach.com/share/reports/7eaec68792993500a82131c81231a582b00c892e?v=2" style="color: #1155cc;" target="_blank">https://tweetreach.com/share/<wbr></wbr>reports/<wbr></wbr>7eaec68792993500a82131c81231a5<wbr></wbr>82b00c892e?v=2</a>). #RarePOV trended<i>nationally</i> during the chat – that is a lot of awareness!<u></u><u></u></span></div>
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<span style="color: #1f497d;">We have a complete Storify that might be of interest: <a href="http://storify.com/phrma/phrma-rarepov-tweet-chat/" style="color: #1155cc;" target="_blank">http://storify.com/phrma/<wbr></wbr>phrma-rarepov-tweet-chat/</a>. I am hoping to have time to create a shorter one to capture a few noteworthy responses to each question as well as a few representative Tweets of the dialogue between participants.<u></u><u></u></span></div>
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<span style="color: #1f497d;">Thank you again for your efforts to promote the Tweetchat in advance and for sharing your insights during the chat. I’d like to host another #RarePOV Tweetchat the week of either January 27<sup>th</sup> or February 3<sup>rd</sup> to share resources and highlight opportunities to coordinate and leverage activities for International Rare Disease Day on February 28<sup>th</sup>. I hope you will join me then too, to continue the dialogue!<u></u><u></u></span></div>
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<span style="color: #1f497d;">Sincerely,<u></u><u></u></span></div>
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<span style="color: #1f497d;">Stephanie<u></u><u></u></span></div>
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CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-91261599535198051422013-02-28T07:53:00.004-05:002014-10-22T08:27:16.631-04:00Media Announcement-Eileen Propp-Alliance for Cryoglobulinemia<!--[if !mso]>
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<b><span style="font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><span style="color: #990000;">Media Announcement February 27, 2013<br />
Alliance for Cryoglobulinemia</span><span style="color: #500050;"><o:p></o:p></span></span></b></div>
<div class="MsoNormal" style="background: white;">
<span style="color: #222222; font-family: Verdana; font-size: 11.5pt;"><a href="http://www.allianceforcryo.org/"><span style="color: #1155cc;">www.allianceforcryo.org</span></a></span><span style="color: #222222; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"> <a href="http://www.allianceforcryo.org/"><span style="color: #1155cc;"><http://www.allianceforcryo.org/></span></a></span><span style="color: #222222; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"> <o:p></o:p></span></div>
<div class="MsoNormal" style="background: white;">
<span style="font-family: Verdana; font-size: 11.5pt;"><br /><b><span style="color: #990000;">
Contact: Eileen Propp</span></b><br />
<a href="file://localhost/tel/%2528925%2529%20381-8750" style="color: #500050;"><span style="color: #1155cc;">(925) 381-8750</span></a><br />
<a href="mailto:eileen@proppsolutions.com" style="color: #500050;"><span style="color: #1155cc;">eileen@proppsolutions.com</span></a><b style="color: #500050;"><o:p></o:p></b></span></div>
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<b><span style="color: #500050; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br />
<br />
</span></b><b><span style="color: #990000; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">FOR IMMEDIATE
RELEASE</span></b><b><span style="color: #500050; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br />
</span></b><span style="color: #500050; font-family: Verdana; font-size: 11.5pt;">Thank you for
agreeing to publish and host the materials created in honor of National Rare
Disease Day. We have five different videos published and available for hosting
on your site(s). Each video is listed below with a summary, video length and
direct link to embed on your site. Please let me know if you have any questions
or need any more information. Your support is very much appreciated.</span><br />
<h4>
<b><span style="font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><span style="color: #990000;">Videos</span></span></b></h4>
<b><span style="color: #500050; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">1. Be Rare!: A
Cryoglobulinemia Public Service Announcement: </span></b><br />
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<span style="color: #222222; font-family: Verdana; font-size: 11.5pt;">Video link: <a href="http://youtu.be/t56kaPfjbeo"><span style="color: #1155cc;">http://youtu.be/t56kaPfjbeo</span></a></span><span style="color: #222222; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><a href="http://youtu.be/t56kaPfjbeo"><span style="color: #1155cc;"><http://youtu.be/t56kaPfjbeo></span></a> </span><br />
<br /></div>
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<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;">Embed link:
<iframe width="560" height="315" src="<a href="http://www.youtube.com/embed/t56kaPfjbeo"><span style="color: #1155cc;">http://www.youtube.com/embed/t56kaPfjbeo</span></a>"
frameborder="0" allowfullscreen></iframe><br />
</span><b><span style="color: #500050; font-family: Verdana;"><br />
</span></b><span style="color: #500050; font-family: Verdana;">1:30 minute video
uses footage of people living with cryoglobulinemia. It shows the strength,
beauty and difference of people with cryoglobulinemia. </span></span><br />
<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">Featuring:
Dr. Monach of Boston University & Vasculitis Clinical Research
Consortium.</span><span style="color: #500050; font-family: Verdana;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: 12.0pt;">
<span style="font-size: x-small;"><span style="color: #222222; font-family: Verdana;">Producer: Matt Hanlon, <a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;">www.thoughtfulduck.com</span></a></span><span style="color: #222222; font-family: Verdana;"><a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;"><http://www.thoughtfulduck.com/></span></a><br />
<br />
</span><span style="color: #222222; font-family: Verdana;">Sponsored by:
<a href="http://www.allianceforcryo.org/"><span style="color: #1155cc;">www.allianceforcryo.org</span></a> &</span><span style="color: #222222; font-family: Verdana;"><a href="http://www.allianceforcryo.org/"><span style="color: #1155cc;"><http://www.allianceforcryo.org/></span></a></span><span style="color: #222222; font-family: Verdana;"><a href="http://www.proppsolutions.com/"><span style="color: #1155cc;">www.ProppSolutions.com</span></a></span><span style="color: #222222; font-family: Verdana;"> <a href="http://www.proppsolutions.com/"><span style="color: #1155cc;"><http://www.proppsolutions.com/></span></a> </span><span style="color: #222222; font-family: Verdana;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white;">
<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;">Alliance for Cryoglobulinemia was co-founded by Marianne
Vennitti & Eileen Propp</span><span style="color: #500050; font-family: Verdana;"><o:p></o:p></span></span></div>
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<span style="color: #222222; font-family: Verdana; font-size: x-small;"><a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;"><http://www.thoughtfulduck.com/></span></a> </span><b><span style="color: #222222; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<b><span style="color: #500050; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">2. Cryoglobulinemia Explained: Paul
Monach, M.D.</span></b><b><span style="color: #500050; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<span style="color: #222222; font-family: Verdana; font-size: 11.5pt;">Video link: <a href="http://youtu.be/ntLD6dLVDr0"><span style="color: #1155cc;">http://youtu.be/ntLD6dLVDr0</span></a></span><span style="color: #222222; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><a href="http://youtu.be/ntLD6dLVDr0"><span style="color: #1155cc;"><http://youtu.be/ntLD6dLVDr0></span></a> </span><span style="color: #222222; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<br />
<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;">Embed link:
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</span><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">16 minute video<br />
</span><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">In this inverview
Dr. Monach explains how cryoglobulinemia affects the blood vessels, causes
damage and is treated. Cryoglobulinemia is rare, not well known and can
cause serious health issues for those living with the disease.</span></span><b><span style="color: #500050; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br />
</span></b><b><span style="color: #500050; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">3. Cryoglobulinemia
Simulation:</span></b><b><span style="color: #500050; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<span style="color: #222222; font-family: Verdana; font-size: 11.5pt;">Video link: <a href="http://youtu.be/YZm5xO5D7AU"><span style="color: #1155cc;">http://youtu.be/YZm5xO5D7AU</span></a></span><span style="color: #222222; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><a href="http://youtu.be/YZm5xO5D7AU"><span style="color: #1155cc;"><http://youtu.be/YZm5xO5D7AU></span></a> </span><span style="color: #222222; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<br />
<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;">Embed link:
<iframe width="560" height="315" src="<a href="http://www.youtube.com/embed/YZm5xO5D7AU"><span style="color: #1155cc;">http://www.youtube.com/embed/YZm5xO5D7AU</span></a>"
frameborder="0" allowfullscreen></iframe><br />
</span><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">1:21 minute video
uses art and stop motion photography to explain the science and how a rare
autoimmune disease called Cryoglobulinemia works. Cryoglobulinemia is a
type of vasculitis or blood vessel damage. Eileen Propp, coordinator has
lived with this disease for 16 years. </span><span style="color: #500050; font-family: Verdana;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="color: #222222; font-family: Verdana;">Artist: Amy O’Hanlon <a href="http://aeohanlon.carbonmade.com/"><span style="color: #1155cc;">http://aeohanlon.carbonmade.com</span></a></span><span style="color: #222222; font-family: Verdana;"> <a href="http://aeohanlon.carbonmade.com/"><span style="color: #1155cc;"><http://aeohanlon.carbonmade.com/></span></a><br />
<br />
</span><span style="color: #222222; font-family: Verdana;">Producer: Matt
Hanlon <a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;">www.thoughtfulduck.com</span></a></span><span style="color: #222222; font-family: Verdana;"><a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;"><http://www.thoughtfulduck.com/></span></a> </span></span><span style="color: #222222; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<b><span style="color: #500050; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">4. Living with Cryo: Eileen
Propp Trailer </span></b><b><span style="color: #500050; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<span style="color: #222222; font-family: Verdana; font-size: 11.5pt;">Video link: <a href="http://youtu.be/-cMJdqZuC8A"><span style="color: #1155cc;">http://youtu.be/-cMJdqZuC8A</span></a></span><span style="color: #222222; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><a href="http://youtu.be/-cMJdqZuC8A"><span style="color: #1155cc;"><http://youtu.be/-cMJdqZuC8A></span></a> </span><span style="color: #222222; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<iframe width="560" height="315" src="<a href="http://www.youtube.com/embed/-cMJdqZuC8A"><span style="color: #1155cc;">http://www.youtube.com/embed/-cMJdqZuC8A</span></a>"
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2:49 minute trailer video for full length feature below.</span>
</span><span style="color: #500050; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br />
</span><b><span style="color: #500050; font-family: Verdana; font-size: 11.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";">5. Living
with Cryo: The Story of Eileen Propp </span><span style="color: #500050; font-family: Verdana; font-size: 9.5pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></b></div>
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<span style="font-size: x-small;"><span style="color: #222222; font-family: Verdana;">Video link: <a href="http://youtu.be/27C9ihSHgec"><span style="color: #1155cc;">http://youtu.be/27C9ihSHgec</span></a></span><span style="color: #222222; font-family: Verdana;"><a href="http://youtu.be/27C9ihSHgec"><span style="color: #1155cc;"><http://youtu.be/27C9ihSHgec></span></a> </span><span style="color: #222222; font-family: Verdana;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: 12.0pt;">
<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">Embed Link:
<iframe width="560" height="315" src="<a href="http://www.youtube.com/embed/27C9ihSHgec"><span style="color: #1155cc;">http://www.youtube.com/embed/27C9ihSHgec</span></a>"
frameborder="0" allowfullscreen></iframe><br />
</span><span style="color: #500050; font-family: Verdana;"><br />
</span></span><span style="color: #500050; font-family: Verdana;"><span style="font-size: x-small;">Full length feature
29 minutes</span>
</span><b><span style="color: #500050; font-family: Verdana; font-size: 9.0pt; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br />
</span></b><span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;">Description: Eileen
Propp was diagnosed with Essential Mixed Cryoglobulinemia (EMC) at the age of
26. Propp’s life up until that moment had been characterized by mysterious
ailments, unexplained sickness, injuries and misdiagnosis. Since her diagnosis
of EMC, she has gained an understanding of the disease and how to manage it.
Propp, 41, has endured some 30 plus surgeries, surgical procedures,
numerous broken bones, blood clots, internal injuries, heart failure and
various misdiagnoses. She has also obtained a Ph.D., been an
American Sign Language interpreter and an advocate for people with
disabilities. This documentary tells the story via interviews with Propp,
her family, friends, coworkers, and clients. It examines the physical,
emotional and psychological aspects and impacts of living with a rare disease.
Propp continues to live as a fierce self-advocate for herself and others
while refusing to let her disease define her. She lives with her husband and
service dog in the Bay Area of California.<br />
</span><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">Featuring:
Dr. Monach of Boston University & Vasculitis Clinical Research
Consortium.</span><span style="color: #500050; font-family: Verdana;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="background: white; margin-bottom: 12.0pt;">
<span style="font-size: x-small;"><span style="color: #222222; font-family: Verdana;">Artist: Amy O’Hanlon, Artist<a href="http://aeohanlon.carbonmade.com/"><span style="color: #1155cc;">http://aeohanlon.carbonmade.com</span></a></span><span style="color: #222222; font-family: Verdana;"><a href="http://aeohanlon.carbonmade.com/"><span style="color: #1155cc;"><http://aeohanlon.carbonmade.com/></span></a><br />
<br />
</span><span style="color: #222222; font-family: Verdana;">Musician:
Lauryn Newson, <a href="mailto:Lauryn@uoregon.edu"><span style="color: #1155cc;">Lauryn@uoregon.edu</span></a><br />
</span><span style="color: #222222; font-family: Verdana;"><br />
</span><span style="color: #222222; font-family: Verdana;">Producer: Matt
Hanlon, <a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;">www.thoughtfulduck.com</span></a></span><span style="color: #222222; font-family: Verdana;"><a href="http://www.thoughtfulduck.com/"><span style="color: #1155cc;"><http://www.thoughtfulduck.com/></span></a> </span><span style="color: #222222; font-family: Verdana;"><o:p></o:p></span></span></div>
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<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;"><br />
</span><span style="color: #500050; font-family: Verdana;">About Alliance for
Cryoglobulinemia:<br />
Co-founded by Marianne Vennitti and Eileen Propp. Alliance for
Cryoglobulinemia is an inclusive network of patients, caregivers, family,
friends, medical professionals and other supporters dedicated to improving the
quality of life for people with cryoglobulinemia. Our goal is create a platform
that links to all efforts, campaigns, research, support and other resources
related to cryoglobulinemia. We utilize community networking,
crowd-funding, peer to peer support and social media to advocate awareness, patient
support, education and research. We hope these efforts will provide better
treatments for patients and lead to the cause and a cure.<br />
</span><span style="color: #500050; font-family: Verdana;"><br />
<br />
</span><span style="color: #500050; font-family: Verdana;"><br />
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<span style="font-size: x-small;"><span style="color: #500050; font-family: Verdana;">Eileen Propp, Ph.D. Organizational
Psychology<br />
</span><span style="color: #500050; font-family: Verdana;"><o:p></o:p></span></span></div>
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<!--EndFragment-->CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-70935206295697687462013-01-28T12:21:00.002-05:002013-01-28T17:47:34.485-05:00Share your Rare Disease story with Pharmaphorum <br />
<br />
http://www.rarediseaseday.org/article/download<br />
<br />
Rare Disease Patients<br />
<br />
http://www.pharmaphorum.com/<br />
<br />
Pharmaphorum is featuring Rare Diseases for the month of February. They will be creating a Public Service Announcement from videos of patients. If you are interested in sharing a piece of your story please following these instructions:<br />
<br />
Record yourself on a webcam by answering these three questions.<br />
<br />
1.<span class="Apple-tab-span" style="white-space: pre;"> </span>What did it feel like when you were first diagnosed with a rare disease?<br />
2.<span class="Apple-tab-span" style="white-space: pre;"> </span>What has been the biggest obstacle to your life with this rare disease?<br />
3.<span class="Apple-tab-span" style="white-space: pre;"> </span>What can you share with other sufferers of rare diseases / what have you learned that will help them?<br />
<br />
When completed send the video file to Rebecca Aris by February 8th.<br />
<br />
https://www.wetransfer.com/<br />
<br />
She will download and edit it for you.<br />
<br />
Thank you,<br />
LaughingNanaCryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-24311994563819163732012-12-10T10:27:00.001-05:002012-12-10T10:39:17.311-05:00Today I'm grateful for Pharmaphorum<br />
<div class="separator" style="clear: both; text-align: center;">
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<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Do you find blessings in each day? Do you notice the windows and doors that constantly open
allowing you the view of new possibilities and do you see the people that cross your
path offering you exactly what you need at the moment? <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I am blessed to have new eyes to see this awareness due to my many
years of illness. Yes, it is a gift that we all receive when adversity
crosses our path of desires, passions and commitments. Clarity becomes the
force and focus of survival mode. Within that clarity is a pathway that leads
us exactly where we are meant to be.
This reality does not negate what I deal with on any given day: extreme
highs and low, uncertainty of treatments options and the fear of not seeing
tomorrow’s sun. It has been an arduous journey as a patient living with a rare
disease but within the darkness, the light of family, friends, caring strangers
and healthcare advocates renew my spirit each day. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">For example, on one particular day, when I was crashing below my
comfort zone, I received a tweet from @rebecca_aris from pharmaphorum wanting
to know if I would be interested in doing an interview. Not knowing who she was or what we were going
to discuss I opened the door, walked in and here is what we said. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<a class="twitter-timeline-link" data-expanded-url="http://bit.ly/RkEdlC" dir="ltr" href="http://t.co/b431fr4L" style="background-color: white; color: #d02b55; font-family: 'Helvetica Neue', Arial, sans-serif; font-size: 14px; line-height: 18px; text-decoration: initial;" target="_blank" title="http://bit.ly/RkEdlC"><span class="invisible" style="font-size: 0px; line-height: 0;">http://</span><span class="js-display-url">bit.ly/RkEdlC</span><span class="invisible" style="font-size: 0px; line-height: 0;"></span><span class="tco-ellipsis"><span class="invisible" style="font-size: 0px; line-height: 0;"> </span></span></a><span style="background-color: white; color: #333333; font-family: 'Helvetica Neue', Arial, sans-serif; font-size: 14px; line-height: 18px;"> </span><span style="font-size: 13.5pt;"> </span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I’m grateful for the opportunity to share my story for other rare
disease patients and communities. I’m grateful for the network of strangers
that allow me to weave my web within social media bringing awareness to the
unmet needs of so many people. I am extremely grateful if you will share my
story for us.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Thank you pharmaphorum for your work in "Bringing Healthcare
Together"<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;"><a href="http://www.pharmaphorum.com/">http://www.pharmaphorum.com/</a><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="background-color: white; font-size: 13.5pt;"><span style="color: #cc0000;">LaughingNana is Grateful for Each Day.</span><span style="color: cyan;"><o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-9864521777146968692012-10-23T14:24:00.000-04:002012-10-23T16:05:39.192-04:00SANFORD CoRDS - Chat With Us Oct. 26th Noon CST<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8WB0iN3DJ0nnDvfBJMpd5bFEWyU2tEO2biBH4sJEUfjPX_jrNt7ny9U2A8hUxbs8Ba5SzMpIru-_eZ7gkxRnAdFuyzTaxw3bNnOkFvXOyA856HiZjWzpgBfv9RH3oQIy6t5CdpCuGWARK/s1600/CoRDS+logo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8WB0iN3DJ0nnDvfBJMpd5bFEWyU2tEO2biBH4sJEUfjPX_jrNt7ny9U2A8hUxbs8Ba5SzMpIru-_eZ7gkxRnAdFuyzTaxw3bNnOkFvXOyA856HiZjWzpgBfv9RH3oQIy6t5CdpCuGWARK/s1600/CoRDS+logo.jpg" /></a></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; font-size: 14px; line-height: 19px; text-align: -webkit-auto;">
<span style="font-family: Arial;"><br /></span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">
<span style="font-family: Arial;">Liz and Natalie from CoRDS met with me a week or so ago to discuss what I would like to share about myself and the Alliance for Cryoglobulinemia on their next Tweet Chat as their guest. After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers but we need your voice as well. Collectively we are larger than the patients of AIDS and HIV put together. That's allot of people living in isolation without answers on this sometimes lonely road to a treatment, a friendship, a community. </span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">
<span style="font-family: Arial;"><br /></span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); text-align: -webkit-auto;">
<span style="font-family: Arial;"><span style="color: #0b5394; line-height: 19px;"><b>CoRDS </b></span><span style="color: #222222; line-height: 19px;">is hosting </span><b style="color: #222222; line-height: 19px;"><i>our</i></b><span style="color: #222222;"><span style="line-height: 19px;"> Tweet chat October 26th, Noon CST, to talk about our </span><span style="line-height: 19px;">obstacles</span><span style="line-height: 19px;"> and challenges, our progress, and our accomplishments that we face everyday on our journey. </span></span></span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">
<br /></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">
<span style="font-family: Arial;"><span style="color: #222222;">Please join Natalie, <b>f</b></span><span style="color: #0b5394;"><b>rom CoRDS</b>,</span><span style="color: #222222;"> myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.</span></span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">
<br /></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); text-align: -webkit-auto;">
<span style="color: #222222; font-family: arial, sans-serif; line-height: 19px;">If you've never joined before, just go to </span><span style="line-height: 19px; text-align: -webkit-auto;"><span style="color: #0b5394; font-family: arial, sans-serif;"><b><i>http://tweetchat.com/ </i></b></span></span><span style="color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">and add the hashtag </span><span style="color: #0b5394; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;"><i><b>#CoRDSChat.</b></i> </span><span style="color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;"> It's easy to follow along and Natalie will give you directions on how to RT, pause and add comments. It's just like twitter so share, share, share. </span><span style="font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;"><span style="color: #222222;">Be sure to follow </span><span style="color: #0b5394;"><i><b>@SanfordCords</b></i> </span></span><span style="color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">on twitter.</span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; line-height: 19px; text-align: -webkit-auto;">
<b style="background-color: #f2eae8; font-family: Arial; text-align: -webkit-auto;"><br /></b></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); text-align: -webkit-auto;">
<span style="color: #0b5394; font-family: Arial;"><b><span style="line-height: 19px;">Please feel free to email me at mrsmvennitti@gmail.com if you need any help with the Tweet Chat set up. Arrive 5 minutes early on </span><span style="line-height: 19px;"><i>http://tweetchat.com/</i></span><span style="line-height: 19px;"> </span><span style="line-height: 19px;">to sign in.</span></b></span><br />
<span style="color: #0b5394; font-family: Arial;"><b><span style="font-size: 14px; line-height: 19px;"><br /></span></b></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig71fHY-yeD0SuhRmzWHJBjusMU-kHl5uffx6hAzdmzF6U7eBuaaaEWkIdq85sqX94axlDPTQ6dqU8S-WSM9CgazfAPGu4hXYn0cvHz7zjhcoKX1AI05rs6zdOwwoPSGmaDSQqtkQ8UG6I/s1600/CoRDSChat+Ad.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig71fHY-yeD0SuhRmzWHJBjusMU-kHl5uffx6hAzdmzF6U7eBuaaaEWkIdq85sqX94axlDPTQ6dqU8S-WSM9CgazfAPGu4hXYn0cvHz7zjhcoKX1AI05rs6zdOwwoPSGmaDSQqtkQ8UG6I/s320/CoRDSChat+Ad.jpg" width="320" /></a></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-size: 14px; line-height: 19px; text-align: -webkit-auto;">
<span style="font-family: Arial;"><b><br /></b></span></div>
<div style="background-color: rgba(255, 255, 255, 0.921569); color: #222222; font-family: arial, sans-serif; font-size: 14px; line-height: 19px; text-align: -webkit-auto;">
<div style="color: #797574; font-size: 14px; text-align: -webkit-auto;">
</div>
<ul class="uiList" style="background-color: #f2eae8; color: #797574; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; list-style: none; margin: 0px; padding: 0px;"></ul>
</div>
<div>
<b style="background-color: white; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; text-decoration: none;"><span style="color: #0b5394;">See you there. Marianne-Laughingnana Cares - I Care Because I'm Rare </span></b></div>
CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com1tag:blogger.com,1999:blog-5535338346868770140.post-90959317356578965692012-09-26T01:46:00.001-04:002012-09-26T01:46:45.382-04:00Departure for Stanford Medicine X
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Anticipation and fear fuel me as I hear the engines roar and
I feel the plane in motion. So long I
have hovered in my quiet, small world, nourished by my family, close friends,
healthcare providers and internet friends.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Leaving my safe place after three years is exciting and frightening, as I venture into a new place leaving my
cocoon of protection, my home. I realize how safe I feel in my little hut of protection
after this three year journey of the unknown, living with a Rare Diseases.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Who will care for me in a new location in California? Will the doctors understand my needs if my
health fails me? There are so many what ifs I face that no one
understands. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Because Stanford Medicine X said yes to my application as an
e-Patient scholar I am traveling across the country from coast to coast. I’ve had so many obstacles to overcome
beginning with my own health along with my dad’s health. Building a presence on social media is time
consuming yet essential as I search for answers to why I am so sick along with
my patient community. <o:p></o:p></div>
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<br /></div>
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I am here. I am
taking off the ground and venturing into a new chapter. Hope tells me miracles happen and remission
can be forever. Fear says, OMG what if
your legs swell and you can’t walk, your fatigue is so bad you can’t think when
you arrive at this medical conference?<o:p></o:p></div>
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<br /></div>
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Reality says, I can handle
whatever comes my way because I have a husband that will do anything for me, a
family that won’t allow me to feel sorry for myself and God to give me the
wisdom and gifts needed to be all I am
meant to be. <o:p></o:p></div>
<!--EndFragment-->CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-50782914772644449792012-09-22T21:34:00.001-04:002012-09-22T21:34:49.152-04:00It's Scary when I feel well - Moving on!
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<span style="font-family: Arial, Helvetica, sans-serif;">False Hope is what I
experience right after my chemotherapy treatments. My energy comes back, the dark black circles
under my eyes become bright, I can think clearly, walk with confidence, think
about tomorrow and begin to dream about the possibility of regaining a normal
life again, whatever what means.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">Prior to the last 14 years,
when my health first declined, I truly loved my profession as a nutrition
counselor, personnel trainer, and fitness advisor. That chapter of my life prepared me for what
is, a body that has failed the norm no matter how healthy I was. I know how to
stay strong within the confines of my home and eat for health not for pleasure
because of my prior life. I am fortunate
to have these tools to survive the life of chronic illness. I worry about all those that aren’t as
fortunate as me.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">When I feel as well as I do
today I realize that getting on the plane taking me to San Diego and then Palo
Alto for Stanford Medicine X conference is a reality. I’m so excited to go and participate and
learn whatever I can for the rare disease community, but I will bring my cane
just in case I start to decline. I will bring my medications just in case I
start to flare. A flare may mean that my
legs and feet swell up so much that I can’t walk. I imagine Stanford will provide wheelchairs,
just in case. It may mean that I will
have to sleep up to 13 hours before I can get out of bed for the next conference
day. There is a possibility that I may
not be able to concentrate on anything anyone is saying, so I’ll just be
present and let life happen as it should.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">I completed my last
chemotherapy treatment just two months ago.
In 6 weeks this very strange protein begins to re-produce itself in my
bone marrow and then all hell brakes loose.
No one has me able to explain to me why this happens. Maybe I can beat
it this time but in reality I have to be that it is a very strong possibility
that my health will decline again and I will be in that place where fear sets
in. Why am I fearful? Because, no one understands what my body is doing and how
to STOP it. Kind of scary isn’t it? I’m
scared because I experienced a brief moment in time when life feels normal and
I don’t want to let it go. I just don’t
want to be a sick person again.</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">The worst part about having a
chronic illness for me is fatigue. I can
deal with allot of pain but when fatigue sets in, life STOPS. I’m a triple a personality but there are days
that nothing, not even my grandkids smiling faces pull me out of that frightening
place where my body just won’t move. Of
course I never let anyone see me that way.
That’s when I hide. People usually say, “Hey Mare, you look pretty good
today”. That’s because most people
never see me when I am the hurting child, the person that just can’t
participate in life. </span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">So today I am well and strong
and I’m making plans and hoping and praying that maybe it might not happen again. Maybe the invader will disappear and never
come back. What will I do with all that wellness? How will I handle it, all over again, if or
when it returns?</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Looks like I lost my paragraphs? Oh well!</span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><sub><o:p><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"> </span></o:p></sub><br />
<!--EndFragment-->CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com1tag:blogger.com,1999:blog-5535338346868770140.post-10724637244202374252012-09-07T17:43:00.000-04:002012-09-09T10:58:38.356-04:00Stanford Medicine X - Getting Ready<!--[if gte mso 9]><xml>
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<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Dedicated to my Dad</span><br />
<span style="font-family: inherit;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUynuF5hRRtBi91XgenmcBRzsth8-4dpVEThLeGkvTtCxvT7ceT0AnTQoqz2EtuoupyMzre2XNibKXH94V1DlU-3ZPw9yh1vAnTkYtHXEbQUymQaBlRBWMaNMbO75iJVBBSDM5jxga5VvS/s1600/280709_10150341109124305_715439304_9510421_8078672_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUynuF5hRRtBi91XgenmcBRzsth8-4dpVEThLeGkvTtCxvT7ceT0AnTQoqz2EtuoupyMzre2XNibKXH94V1DlU-3ZPw9yh1vAnTkYtHXEbQUymQaBlRBWMaNMbO75iJVBBSDM5jxga5VvS/s320/280709_10150341109124305_715439304_9510421_8078672_o.jpg" width="320" /></a></div>
<span style="font-family: inherit;"><br /></span></div>
<span style="font-family: inherit;"></span>
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-family: inherit;">How long
has it been since I’ve visited my blog?
When I finally opened my last post that said, “under construction”, I
realized it has been 7 weeks. I had so many plans for my new life as a health
advocate and yet life keeps getting in the way.
<u>Or, am I getting in the way of life</u>?
I’ve always been very goal oriented, never missed a deadline, and have
accomplished in most cases exactly what I have set out to do, unless of course
my health got in the way. <o:p></o:p></span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">My dad has
been very ill since July 24<sup>th</sup> so I dropped everything in my
path to care for him. Who wouldn't do that for their dad? This is a man who put himself on kidney dialysis, at the age of 88 yrs, old because he lives an active life. Kudos to dad! I'm so proud of his choice to live. </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Two months prior, I let my work stagger because of my own
health problems. I have been working so
hard to prepare myself for Stanford Medicine X. </span><br />
<span style="font-family: inherit;"><br />
What is Medicine-X?<o:p></o:p></span></div>
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<span style="font-family: inherit;"><br /></span>
<br />
<div class="MsoNormal">
<span style="background-color: white; font-family: inherit;"><a href="http://medicinex.stanford.edu/2012/07/28/our-e-patients/">http://medicinex.stanford.edu/2012/07/28/our-e-patients/</a></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span><a href="http://medicinex.stanford.edu/videostalks/">http://medicinex.stanford.edu/videostalks/</a></span></div>
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<span style="font-family: inherit;">Several months
ago my twitter mentors suggested that I consider applying for a scholarship as
an e-Patient Scholar to Stanford Medicine X, in California. It sounded both exciting and interesting but
I really had no idea what it was all about. At the time I was like a sponge
soaking up everything and anything I could to learn about empowered patients
and how to advocate for my rare disease, Cryoglobulinemia. I followed through with the application and
to my surprise I qualified and was accepted.
This was an honor for a newbie e-Patient and a responsibility I took very
seriously. I was now motivated to work
even harder to learn all that I could about healthcare social media, global
rare disease networks, my disease and anything else that would empower me to be
the best e-Patient I could. Everyday was
a new adventure as I traveled through this new world that was opening up before
my eyes. Many times I felt less than
adequate like a new college student who never finish high school. I was
learning a new language, meeting new people in an industry I had never venture
into before. But I was in love with
learning and sharing all that I discovered to help my community. It is overwhelming
yet exhilarating. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">So I have
to ask myself, since my plans haven’t gone exactly as I had anticipated leading
up to Medicine X, should I still go? Am
I still qualified? I have not accomplished all that I have set out to do by the
end of September for the conference. My
website isn’t up for my rare disease. My
blog has fallen through the cracks. I didn’t start my fundraiser and haven’t been
able to keep up with my twitter contacts and friends. No, things haven’t gone as planned but I
still am an empowered patient seeking answers not only for myself but also for
all rare communities. What I have learned are life lessons on this detour. <o:p></o:p></span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">For me,
life is about exploring new territory, knocking down roadblocks, adjusting to
change, accepting each day as it presents itself with gratitude and reverence
and being true to the person I am.</span></div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="MsoNormal">
<span style="font-family: inherit;">Laughingnana
Cares about her Dad</span><br />
<span style="font-family: inherit;">@mvennitti</span></div>
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<br /></div>
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<br /></div>
CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-83850800112467446872012-07-20T20:01:00.000-04:002012-09-07T12:33:48.486-04:00Patient Advocacy and living with chronic health issues. <div class="separator" style="clear: both; text-align: center;">
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAVIsYWmUvYEWtynZaEpqA-QNt34nx2pf5_Ot6qhFQHFSmj9n4lIDc3cw8uAHUIUGa1prCxIetCtAmghRIffrkTpB2h_S3f9rkqtvZZtRmbpFkaHBJ262jmlaSU-z06LTTfz-jKNGcKp8D/s1600/4127248.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAVIsYWmUvYEWtynZaEpqA-QNt34nx2pf5_Ot6qhFQHFSmj9n4lIDc3cw8uAHUIUGa1prCxIetCtAmghRIffrkTpB2h_S3f9rkqtvZZtRmbpFkaHBJ262jmlaSU-z06LTTfz-jKNGcKp8D/s200/4127248.gif" width="200" /></a></div>
<b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><br /><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Have you noticed that my blog still hasn't made any new construction changes again? Imagine life without making plans that you can stick to. Imagine it on a daily, weekly, monthly and yearly timeline. It's frustrating. That's what it's been like for me for the past 14 years of my life and for the many people that live with unpredictable diseases. I'm not complaining or looking for sympathy just simply stating a fact that causes us nerve racking frustration and emotional roller coaster rides. Oh well, tomorrow's another day.</span></span></b><br />
<b style="background-color: white; font-weight: normal;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span></span></b>
<b style="background-color: white; font-weight: normal;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: 'Trebuchet MS', sans-serif;">Two months of health hell has blurred my focus. It's challenging to accept the plethora of symptoms, tests and treatment options that is my reality. Cryoglobulinemia has come back in force and driven me into survival mode. Cryo first appeared in October 2009 and here I am July 2012 starting the whole process again. I sometimes lose hope when I think about the unknown that is before me. Rare diseases generally have no standard approved treatment protocol. It feels like a guessing game! Sadly, my guess is that it is going to be another tough road. I really don’t want to travel down that road again but … I do know I that in spite of my fears I have clearer vision this time around because I’ve visited this road before. It is not the foreign road it used to be!</span></span></b><br />
<b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"> </span><br /><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">So how do you find clarity when life becomes more complicated? For me it is part of the process. I try to accept the possibilities that who I am and what I am experiencing is exactly how it should be. My yogi brain can sit with this positive form of healing information but not when I’m a complete basket case! The process when dealing wi</span><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">th life threatening diseases is one that involves a regular mourning process. These are my thoughts as a trudge through the rocky road praying that the open highway is around the bend.</span><br /><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"> </span></span></b><br />
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Accepting that the invader visiting my body is not a beast; it is simply a foreigner.</span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Letting go of the realization that any plans for the near future may not come to completion in my time frame, if at all.</span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Awareness that each day I live is going to be a full time job to mentally survive.</span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Physical survival means paying attention to mindful body scans, staying strong without infringing on the loss of energy, deciding do I or don’t I push through debilitating fatigue, mental fog, and pain.</span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Finding balance between false hope, hope and reality.</span></span></b></li>
</ul>
<b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"> </span><br /><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">Wouldn’t it be lovely if my blog was as perfect as I envisioned, I were delivering all the information I acquire and sharing it via Social Media. If I could fulfil my diary of thoughts everyday. I hope for this not only for myself but for those who are on their own personal journeys. Wouldn’t it be lovely if I could power through my obstacles as a rare disease patient, an advocate and just get the job done. But, I can clearly see that this too is a process. I must be accepting that these stops along the road open me up to important lessons. </span></span></b><br />
<b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="white-space: pre-wrap;"><br /></span></span></b>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">I get to slow down and stop being a Cryo champion and just be content with what is exactly before my eyes. </span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">I must refocus and recognize my purpose as this woman with a strange and rare disease who doesn’t have to fulfill my old self vision: my persona of superwoman. </span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">It’s a lesson in letting go of dreams that may never happen and places I most likely will never visit. </span></span></b></li>
<li style="background-color: transparent; list-style-type: disc; vertical-align: baseline;"><b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">I am continually trying to shed my ‘false’ layers. I must get rid of layers I no longer need and face the layer that is before me each and every day and being OK with what I’ve been given.</span></span></b></li>
</ul>
<b style="font-weight: normal;"><span style="font-family: 'Trebuchet MS', sans-serif;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"> </span><br /><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;">I am learning through this process that I must give myself credit because I am courageous on most days. I’m learning how to be compassionate with myself and with others. I’m letting go of who I think I should be before my peers. I am trying to become truly genuine on this not so new journey. But, I feel most importantly I am finally embracing my vulnerability.</span></span></b><br />
<b style="font-weight: normal;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span></span></b>
<b style="font-weight: normal;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: 'Trebuchet MS', sans-serif;">Life is tough but you have to hear the music in the background to stay in the game. This weekend I'm listening to my husbands old rock and roll band of 39 years ago, in my garage. Now if that doesn't take my mind off my stuff what will?</span></span></b><br />
<b style="font-weight: normal;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: 'Trebuchet MS', sans-serif;"><br /></span></span></b>
<b style="font-weight: normal;"><span style="background-color: transparent; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: 'Trebuchet MS', sans-serif;">laughingNana-I CARE because I'm Rare</span></span></b>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com2tag:blogger.com,1999:blog-5535338346868770140.post-48637792803666268962012-07-06T14:00:00.000-04:002014-10-21T15:01:19.006-04:00Sleeping and Waiting For Healing With YOU My Friends.<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: left;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnsEmjFHxOrU_2-dEftxTO5M-GvKCNhwwnZiR9F-9XQAAIUbdnCCj5NoELyMwGuPv_DSVpA9WlQmHwtQF-4PynZuqph0Eaujs4hnxGZB43VX80vnJQtFZKZ8NBAr5cb0SSAx63tMPxqqDt/s1600/Under_Construction.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnsEmjFHxOrU_2-dEftxTO5M-GvKCNhwwnZiR9F-9XQAAIUbdnCCj5NoELyMwGuPv_DSVpA9WlQmHwtQF-4PynZuqph0Eaujs4hnxGZB43VX80vnJQtFZKZ8NBAr5cb0SSAx63tMPxqqDt/s320/Under_Construction.jpg" height="320" sca="true" width="300" /></a><span style="color: black; font-family: Arial, Helvetica, sans-serif;">Three weeks ago I started redesigning my blog but as you can see it is still under construction. Why? I had an unexpected setback with my health. When that happens I go into a state, which I refer to as SLEEPING. Now sleeping is not one of my favorite things to do, especially during the day, since my nature is that of an A personally. Go, do, plan, dream, accomplish are all things that fill my spirit with an overwhelming love for life. I become sad when I fall asleep because I know that once again I am losing control. . This present state of slumber is due to low hemoglobin levels, swelling in my legs and feet which obviously has put my girlish gate down to a slow crawl, numerous test, brain fog, fatigue and a tad of depression and exasperation to say the least. </span></div>
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<span style="color: black; font-family: Arial, Helvetica, sans-serif;">Today I am resting in this place of gentle sleep waiting for medical treatments to stimulate the healing process allowing me to rejoin life with the enthusiasm I hold in my heart. I must be patient and allow the flow of life's energy to work its magic and offer me new eyes once again as I awake from my slumber. </span></div>
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<span style="color: black; font-family: Arial, Helvetica, sans-serif;">Maybe next week I will get back to the business of picking out colors, formatting resources, posting patient stories, and peering through the window of opportunity that proliferates the healing of my body, mind and spirit.</span></div>
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<span style="color: black; font-family: Arial, Helvetica, sans-serif;">For today I will recall and cherish all those who have touched me and offered me strength, hope and friendship through it all. </span></div>
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<span style="color: blue; font-family: Arial, Helvetica, sans-serif; font-size: x-small;"> United We Stand-Brotherhood of Man</span><br />
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<a href="http://www.youtube.com/watch?v=460INShy3BU">http://www.youtube.com/watch?v=460INShy3BU</a><br />
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LaughingNanaCryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-24829120366342424752012-06-18T17:39:00.001-04:002012-06-18T17:39:07.636-04:00My site is under Construction!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgQdGvhZwqUlRakisTwCr2MM2iWAutf7csg0WeEmIF3cM_h4qf9WVRGRGOSRcCJeEgGhX8JL2nFcsPBeKs933tHIfd1ewe0bNcWLj1K_-FBDBC39diPTBIj7aklSa9wWrCGP0apsGVqPdL/s1600/under+construction+sign.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="261" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgQdGvhZwqUlRakisTwCr2MM2iWAutf7csg0WeEmIF3cM_h4qf9WVRGRGOSRcCJeEgGhX8JL2nFcsPBeKs933tHIfd1ewe0bNcWLj1K_-FBDBC39diPTBIj7aklSa9wWrCGP0apsGVqPdL/s320/under+construction+sign.jpg" width="320" /></a><span style="font-family: Tahoma, sans-serif; font-size: 13.5pt;">This site is under construction
with a new look and a clearer vision offering a place for patient
stories, people I admire, things I love, topics on Rare and Autoimmune Disease
and a look at Complete Wellness.<o:p></o:p></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 13.5pt;">Please be patience with me as I redecorate my home. The Welcome
sign is being painted as I post. <o:p></o:p></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 13.5pt;">So many things have changed since I started my blog, that's why I'm
cleaning house. If fact when I wrote my first post I was just writing my
thoughts on my computer instead of in a journal because I have
terrible hand writing and half the time I can't read what I write. I
heard people mention blogs so decided to give it a try. I was
never consistent because I've been to ill most of the time and my
heart wasn't in it and who really cared, so I thought. I'm not a writer or an
editor so the words don't flow as eloquently as those I admire most
but the words I do write are my sincerest thoughts as simple as they may be.<o:p></o:p></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 13.5pt;">I began to write because I was living in the fear of dying when I
was first diagnosed with a rare disease called Cryoglobulinemia Vasculitis.
At the time I couldn't even say the words let alone spell them. It
was a distressing and frightening time in my life so I started to
write about it and look for people like myself with Cryo but I could only find
one person. There weren't any organizations, support groups or
information to tell me now to live with this strange disease that caused my
blood to turn to a thick gel in changing and cold temperatures. I started a
search that has changed my life from a lost and frightened woman to an
empowered patient living with a purpose and a passion to touch the lives of
others looking for hope and direction. Regina Holliday painted a
jacket for me for The Walking Gallery, "Go tell it on the Mountain”. I
will live up to the honor of this call by sharing my knowledge and networks as
I walk this journey of hope and advocacy. <o:p></o:p></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 13.5pt;"><a href="http://reginaholliday.blogspot.com/">http://reginaholliday.blogspot.com/</a><o:p></o:p></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: medium;">laughingNana isn't getting any younger but she sure is happier since she has met all of you.</span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: medium;">Be well in Body, Mind and Spirit.</span></div>
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<br />CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-14647056162926004602012-06-10T17:45:00.001-04:002014-10-21T15:08:56.091-04:00Who Am I?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img src="http://gmi.uoftpharmacy.com/blog/wp-content/uploads/2012/03/j-tyree-yoga120.jpg" height="133" style="margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Who Am I?</td></tr>
</tbody></table>
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<span style="font-family: Verdana, sans-serif;">If I go to a funeral and walk
away untouched, I say, "shame on me". In the pain of loss,
seeing the tears of grief, connecting to memories gone by, if I don't question
who I am and why I do what I do, I say, "shame on me". Does it matter
what I do? Does it matter who I am in society? Who hears me? No, who really
hears me? It's the circle of connectivity that empowers the spirit.
Who am I connected to? I travel in and out of circles yearning to feel
the throbbing beat of other minds and hearts that feel as I do, perhaps
laugh my kind of laugh, feel my passion and understand the love that
calls me to purpose.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Verdana, sans-serif;">So I think, when I leave will you know my reason for being? Did
you know me or just the face of me? I love living and I live to love yet
fear invades me. Why? What if I die today? What will THEY say? Did I
really live? Never will I know living until I touch each moment. If I can say
goodbye to yesterday and keep my fears at bay of tomorrow than I can truly live
this moment, every moment in peace, joy and wellness.<o:p></o:p></span></div>
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<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Verdana, sans-serif;">My heart saddened watching the faces of those who didn't say their
last goodbyes, those letting go of a human touch that fed their soul. But I
rejoiced just knowing someone who led such a simple life yet touched so many. Her
Sunday pasta dinner not only feed her families bellies but filled their
lives with memories of unconditional lasting love.<o:p></o:p></span></div>
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<div style="margin: 0in 0in 0.0001pt;">
<span style="font-family: Verdana, sans-serif;">Now I think about me and how sick and tired I am living with a
Rare Disease, Cryoglobulinemia. I'm special! Who hears that? How do I count the
gifts bestowed on me through my illness? I've been given 3D glasses to view my
life, your life, everyone's life wearing psychedelic glasses. Life is
electrified by knowing there may not be a tomorrow? Many years of yoga,
meditation and mindfulness have never brought me to the clarity of
vision I now see by living in the moment of the shadow of death. This is
a gift! Clear seeing is beyond comprehension when the ego of the
self dissolves. STOP! Look around; observe the meaning and purpose
of who and why we do what we do. See, feel, notice and be in the ultimate
reality of the educated mind versus the voice of the true spirit
dwelling in the quiet rampage of the mind.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">laughingnana</span></div>
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CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-72518304382291517172012-04-01T15:02:00.001-04:002012-06-15T23:29:01.269-04:00I wonder what will be in 100 years.<span style="color: #444444; font-family: Verdana, sans-serif;">Friday March 30<sup>th</sup>,
2012 was my 10<sup>th</sup><span class="apple-converted-space"> </span>week
anniversary celebrating the beginning of the recovery of my body. I was waking
up after three long years of illness. That Friday, I went about my day
like any other day but something felt different. There was a bit more
oxygen in my muscles, my mind was clearer, my heart was lighter. When the
time was drawing near to bedtime I realized it was the first, almost normal
day, I had in three years.</span><br />
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<span style="color: #444444; font-family: Verdana, sans-serif;">It was an incredible feeling as
my body and mind started to feel a new sense of wholeness. I felt elation
and gratitude as one day led into the next realizing that my main concern was
not on my health but regaining a lost life. I was rejoining the circle of life
in a way that I so desperately missed.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">In October of 2009, I received a
call from my rheumatologist that my blood count was extremely low.
My doctor feared that I had internal bleeding and so I began the testing
process. My nightmare began when the doctors could not find out why this
was happening. Added to this new issue my kidneys began to decline, I
developed a distinctive rash on my legs, my autoimmune system was going haywire
causing infection after infection, a lump surfaced on my arm, tensions was
rising, testing and testing, blood infusions were numerous, biopsies and yet no
answers. My body was failing yet there were no answers. The doctors
at the mayo Clinic in MN finally diagnosed me with two rare diseases, Cryoglobulinemiua
Vasculitis, in July 2010, along with a host of other complications.
During the course of the next three years I fought for my life. After two
separate rounds of chemotherapy, I’m starting to face each new day with a smile
of hope for a future of wellness.<o:p></o:p></span></div>
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<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">It has been 13 years now since I
let go of my former life when autoimmune diseases attacked my body. It
began with Lyme disease, fibromyalgia, chronic fatigue syndrome, rheumatoid
arthritis, Raynauds, thyroid disease, anemia, hormone imbalances, just to
identify the main diseases. I was living a healthy lifestyle, eating
right and exercising at the time. Most people called me a health
nut. In fact, my career was in health, fitness and nutrition. What
was the benefit I often ask myself? What causes disease to attack a seemingly
healthy body? Why did I have to let go of all the things I loved so
desperately? Why was I always sick, so weak, in so much pain and never able to
regain my strength long enough to reenter the life I once knew? My
husband and I tried every conceivable treatment to help my body regain strength
and wellness but to our disappointment, it never happened.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">Just when I thought my medical
condition could not get any worse, to my utter surprise my health desperately
decline in 2009. We knew that I was seriously ill, my disease was life
threatening and there was no allot that was know about my condition. It
was frightening not knowing where this rare disease was leading me. This
fear is one that millions live with every day. A whole new world opened
up to me when I found other people living with rare diseases on social media
sights all around the world. Now I sit day after day in conversation with
this new world. I know that I can make a difference in at least one
person’s life by sharing my life experiences living with chronic illness and
learning to cope with my rare diseases. I will share my stories, my
knowledge and my struggles along with my confidence and courage to live my life
as rich and as full as I believe is possible.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">I have learned so much about
life on this journey living with daily illness and count my blessings that I
view my live with a cup that is always full. I can honestly say that I am
fortunate to have been removed from the merry go round of life, to have had the
opportunity to look within myself and see what I call the quiet voice of my
soul. I’ve embraced the philosophy of the east and honor myself in spite
of the fact that my body is ill. I have learned that I am not my body and
I will do everything I can to understand what I can do to heal what hurts.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">This is a brand new chapter and
a powerful one for me. I’ve been told I’m in remission, whatever that
means. Basically my doctors do not know enough about my illness to tell
me what tomorrow will bring. But, I do not need to know about tomorrow
because my focus is on today.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">There is so much that is
unknown, in this year of 2012, about these mysterious diseases that are
affecting society. So many children are suffering with no
treatment. Why? Is it the environment, global warning,
toxins, fake food, pesticides, additives, preservatives, antibiotics,
contaminates, medications, processed food, WHAT? How have we gotten to
this point? How long will it take society to clean up this toxic
world? The question is actually what we do not know. Where do we
start undoing the damage done to this once pure and clean world? We are
progressing in this 21<sup>st</sup><span class="apple-converted-space"> </span>century
but how long it will take before we end this epidemic threatening the lives of
society, zapping our life energy needed to maintain an average life. It
have been said in Buddhism, it takes a thousand life times to undue all that we
have created within to rediscover our true selves. How long will it take
mankind to clean up our toxic world and restore health in the human body?<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">I just ask myself these
questions because I’m not a scientist, a doctor or and educated person that
would understand things beyond ordinary living. I know the basics of
clean living and it hadn’t worked for me. There are too many other
factors that clearly are out of control.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">Now I’m awake again, able to
think clearly and process new information, I am learning so much about social
media, how it is connecting the dots between sick people around the world,
patients like me, the medical industry, legislation and research. It is
and endless web of people meeting people, and that continues into not only
medical issues but every aspect of life. It’s exciting to watch and I
pray that the lines that are connecting the dots will someday bring us to a
better, cleaner and healthier world. I want to engage my energies into
this powerful grassroots movement in hopes to create awareness to this complex
mystery of health. It is my intention to empower those living with
chronic and debilitating diseases to observe themselves as a person of wellness
not just a broken body. Through mindful awareness, we can live a life of wholeness
in ways that some many never have imagined. The Buddha once said, ‘what
you think you become”. I will not become disabled in my mind or in my
spirit.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #444444; font-family: Verdana, sans-serif;">The miracles that will take
place within the medical field in the next 100 years are beyond my comprehension.
I imagine cruelty to animals will be extinct, we will swim in crystal clear
waters, the food we know of today will no longer be contaminated with poisons
that destroy our immune system, pesticide will be a term no longer in
existence, the emphasis will totally be on wellness not illness, the medical
field will be one of solidarity with holistic care being in the forefront, our
bodies will be clean. Is it is possible? All things are possible in
and through God but what about in the hearts and minds of mankind? Will
the global connection of all beings someday lead us to a healthier life style
where disease is nonexistent? I wonder.<o:p></o:p></span></div>
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<br /></div>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com1tag:blogger.com,1999:blog-5535338346868770140.post-69511739861686346572012-03-13T09:07:00.001-04:002012-06-15T23:25:40.201-04:00Rethinking the loss of oneself.<br />
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<span style="line-height: 1.2em;"><span style="font-family: Arial, Helvetica, sans-serif;">This is the first short blog I am posting as I catch up on the last 15 months of my life living with Cryoglobulinemia.</span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span style="line-height: 19px;"><br /></span></span></div>
<div style="padding-bottom: 0.25em; padding-left: 0px; padding-right: 0px; padding-top: 0.25em;">
<span style="font-family: Verdana, sans-serif;"><span style="line-height: 1.2em;">It's important to realize that everyone is entitled to a pity party as situations arise in our lives especially when illness </span><span style="line-height: 19px;">incapacitates normal living. The poor me attitude gets us no where. It simply</span></span><span style="font-family: Verdana, sans-serif; line-height: 1.2em;"> boils down to two choices. Either you say, these are the cards I've been dealt and no matter how bad they may look I'm going to play them the best I can, or you give in to letting your mind take you to dark places of negativity. What are your chances for happiness then. I chose life, freedom from doom, possibilities for tomorrow. I do understand that the human body can only withstand a certain level of stress and eventually the nervous system breaks down causing emotional issues. I've been there in my most difficult years which have been many. In situations like this I agree we may need either counseling or medical intervention or perhaps a crazy night out with a bunch of friends. These times don't have to last forever. They are just brief moments in time that we learn to rise above if we choose.</span></div>
<div style="padding-bottom: 0.25em; padding-left: 0px; padding-right: 0px; padding-top: 0.25em;">
<span style="font-family: Verdana, sans-serif;"><span style="line-height: 1.2em;">First let go of all the negative things that rattle the mind, that being the things that remind us of loss. Then restore our minds with the opportunity of inventing "a new me". There is a Buddhist saying, "You become what you think". I have learned to rethink the new me. Because my state of "</span></span><b style="font-family: Verdana, sans-serif; line-height: 1.2em;">wellness</b><span style="font-family: Verdana, sans-serif;"><span style="line-height: 1.2em;">" has changed that does not mean that I have changed. I am still the same person with physical limitations. Notice I did not say my health problems. So important. I can not let my physical limitations stop my life. As a sit quietly and let go of the loss, pain, frustration, fear, and allow the past to leave my mind and my energy body I now can open myself up to new possibilities. I once was, by title, a personnel trainer, body builder, athlete, yoga instructor, sales associate, sales manager, landscape designer, </span><span style="line-height: 19px;">nutrition</span><span style="line-height: 1.2em;"> </span><span style="line-height: 19px;">counselor. That does not determine who I am today. Today I am free from titles.</span><span style="line-height: 1.2em;"> My door is open and the breeze continues to bring me friends, teachers, mentors, opportunities, love and the ability to see that I still am Me but my exterior has changed. I will always be a devoted wife, mother and nanny but my first priority is finding the peace and joy that enthralls me to become a better me. In my lowest times I held desperately onto <b>Hope</b> but now my </span><span style="line-height: 19px;">visceral</span><span style="line-height: 1.2em;"> reaction has become <b>Determination. </b></span></span></div>
<div style="line-height: 1.2em; padding-bottom: 0.25em; padding-left: 0px; padding-right: 0px; padding-top: 0.25em;">
<span style="font-family: Verdana, sans-serif;">I am determined to find answers for others suffering with this rare disease Cryoglobulinemia. I will find support and help lead the way to a community just for our disease. Sitting alone at home with a rare disease is frightening because you know you aren't going to get a set of text book answers. You may not get answers at all. Finding a doctor who understands a rare disease is a big undertaking. Finding an approved treatment is almost unheard of. But we never give up hope.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;"> We may be Rare. But we are Strong.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;">Sending healing thoughts to all.</span><br />
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<br class="Apple-interchange-newline" /></div>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-51851425858207344392012-02-26T09:49:00.001-05:002012-06-15T23:32:50.471-04:00<div class="separator" style="clear: both; text-align: center;">
<b><span style="color: #0b5394; font-family: Verdana, sans-serif;">Rare Disease Day - February 29,2012</span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA_TguQ8I9LY33ASPgCT-_Pqof1Fh5_OdcSvX9cnLIkH5WRJPJUj9LLOQhmtO47j1wPkY-6HOtcf6WP_UOo9dVRFuTXQlw_tp-BJLibjj1BVVNi2SV6n4ZZN7BOg2a68eP73UmNVYMS0jP/s1600/IMG_6401.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA_TguQ8I9LY33ASPgCT-_Pqof1Fh5_OdcSvX9cnLIkH5WRJPJUj9LLOQhmtO47j1wPkY-6HOtcf6WP_UOo9dVRFuTXQlw_tp-BJLibjj1BVVNi2SV6n4ZZN7BOg2a68eP73UmNVYMS0jP/s320/IMG_6401.JPG" width="320" /></span></a></div>
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Handprints Across America</span></span><br />
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<span style="background-color: white;"><span style="font-family: Verdana, sans-serif;">There are nearly 30 million Americans living with rare diseases. We want to see you and how Rare Disease Day is spreading across the United States. We invite you to <a href="http://rarediseases.org/rarediseaseday/handprints/" style="color: #f47d2f; font-weight: bold; margin: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;" target="_blank" title="Handprints Flier">print out this flyer</a> with the Rare Disease Day logo and to take a picture of you holding it up anywhere in the US. We will post these pictures in a gallery on the Rare Disease Day US website. <a href="http://rarediseaseday.us/meet-the-community/handprints-across-america-gallery/" style="color: #f47d2f; font-weight: bold; margin: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;" title="Handprints Across America Gallery">View what has already been submitted</a></span></span></div>
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<span style="font-family: Verdana, sans-serif;"><a href="http://rarediseaseday.us/take-action-now/handprints-across-america/">http://rarediseaseday.us/take-action-now/handprints-across-america/</a>
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<span style="font-family: Verdana, sans-serif;">Empowered patients are coming together around the world to help bring reform to our healthcare industry. Please read. <a href="http://e-patients.net/">http://e-patients.net/</a></span><br />
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<span style="font-family: Verdana, sans-serif;">If you or your loved one has been diagnosed with a Rare Disease then join in and fight for awareness, education and research. Open your eyes and see the connectivity happening today on our social networks.</span><br />
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<span style="font-family: Verdana, sans-serif;">Join me today!</span><br />
<br />CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-12448452129559252842012-02-16T08:56:00.000-05:002012-06-15T23:31:33.513-04:00ULTRA ACT FOR RARE DISEASES 2012<span style="background-color: white; font-family: Verdana, sans-serif; line-height: 14px; text-align: left;">A QUICK READ</span><span style="background-color: white; font-family: Verdana, sans-serif; line-height: 14px; text-align: left;">Information on the ULTRA ACT now be addressed in congress. You can easily vote.</span><span style="background-color: white; font-family: Verdana, sans-serif; line-height: 14px; text-align: left;">The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, will improve access to the FDA's Accelerated Approval process for very rare diseases, provide a more predictable regulatory process, bring down development costs, and spur investment in the development of treatments. Additionally, ULTRA requires the FDA to use the best science available, ensuring treatments are safe and effective and reach patients sooner. </span><span class="text_exposed_show" style="background-color: white; display: inline; font-family: Verdana, sans-serif; line-height: 14px; text-align: left;">With the introduction of ULTRA, the EveryLife Foundation will begin to build Congressional support for this important legislation. Most importantly, we thank Representatives Stearns and Towns for their leadership and support of the rare disease community.</span><br />
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<span style="font-family: Verdana, sans-serif;"><span class="text_exposed_show" style="background-color: white; display: inline; line-height: 14px; text-align: left;"><a href="http://www.curetheprocess.org/ultra_act" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.curetheprocess.org/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>ultra_act</a></span></span><br />
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<span style="font-family: Verdana, sans-serif;">Marianne Vennitti</span><br />
<span style="font-family: Verdana, sans-serif;"><a href="https://www.facebook.com/groups/318304641519371/">https://www.facebook.com/groups/318304641519371/</a>
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<span style="font-family: Verdana, sans-serif;">Cryoglobulinemia Vasculitis Organization</span><br />
<br />CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-66203529496491127092012-02-16T08:54:00.001-05:002012-06-15T23:33:34.053-04:00RARE DISEASE DAY -<span style="font-family: Verdana, sans-serif;"><br /></span><br />
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<span class="messageBody" data-ft="{"type":3}" style="font-family: Verdana, sans-serif; font-size: small;">Want to get involved in Rare Disease Day? Just open the link and tell your story or post your photo. If nothing else just look and read about all the others with a Rare Disease who are also fighting for their lives. Alone we are Rare. Together we are Strong.<br /></span></h6>
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<a aria-hidden="true" class="external UIImageBlock_Image UIImageBlock_MED_Image" data-ft="{"type":41}" href="http://www.rarediseaseday.org/" rel="nofollow" style="color: #3b5998; cursor: pointer; float: left; margin-right: 10px; text-decoration: none;" target="_blank" title=""><img alt="" class="img" src="https://s-external.ak.fbcdn.net/safe_image.php?d=AQCLd-UT4Mc_v2dk&w=90&h=90&url=http%3A%2F%2Fprofile.ak.fbcdn.net%2Fhprofile-ak-snc4%2F276580_182286155121670_1980556_n.jpg" style="border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; max-height: 90px; max-width: 90px;" /></a><br />
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<strong><a href="http://www.rarediseaseday.org/" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank"><span style="font-family: Verdana, sans-serif; font-size: small;">Rare Disease Day</span></a></strong></div>
<span class="caption" style="font-family: Verdana, sans-serif; font-size: small;"><a href="http://www.facebook.com/" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">www.facebook.com</a></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: small;">Raise awareness for patients living with Rare Diseases</span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: small;">Marianne Vennitti</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: small;">Cryoglobulinemia Vasculitis Organization</span></b></div>
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</div>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-483811961342514362012-02-16T08:52:00.002-05:002012-02-16T08:52:22.748-05:00RARE DISEASE DAY VIDEO<br />
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<span class="messageBody" data-ft="{"type":3}">This is the Official Video for Rare Disease Day. It's awesome.</span></h6>
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<a ajaxify="/ajax/flash/expand_inline.php?replace=1&target_div=uts6w0_48&context=story&share_id=158658490917924" aria-hidden="true" class="uiVideoThumb UIImageBlock_Image UIImageBlock_MED_Image" data-ft="{"type":42,"video_type":"share"}" href="https://www.facebook.com/groups/318304641519371/" id="uts6w0_48" rel="async" style="border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #3b5998; cursor: pointer; display: inline-block; float: left; margin-right: 10px; overflow-x: hidden; overflow-y: hidden; position: relative; text-decoration: none;" tabindex="-1" target="_blank"><img alt="" class="img" src="https://s-external.ak.fbcdn.net/safe_image.php?d=AQBPxYN4oB8vwwwl&url=http%3A%2F%2Fi1.ytimg.com%2Fvi%2FLBVug-GVLg0%2Fhqdefault.jpg" style="border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; max-height: 130px; max-width: 130px;" /><i style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(https://s-static.ak.facebook.com/rsrc.php/v1/yB/r/jxUplchomFH.png); background-origin: initial; background-position: 0px 0px; background-repeat: no-repeat no-repeat; bottom: 5px; height: 26px; left: 5px; position: absolute; width: 35px;"></i></a><div class="UIImageBlock_Content UIImageBlock_MED_Content fsm fwn fcg" style="color: grey; display: table-cell; vertical-align: top; width: 10000px;">
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<strong><a href="http://www.youtube.com/watch?v=LBVug-GVLg0" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Rare Disease Day, 29 Feb 2012</a></strong></div>
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February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European co...</div>
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</div>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com1tag:blogger.com,1999:blog-5535338346868770140.post-12625264072313909912012-02-16T08:51:00.003-05:002012-02-16T08:51:54.023-05:00RARE DISEASE DAY - WHAT YOU CAN DO FROM HOME<br />
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<span class="messageBody" data-ft="{"type":3}">MY suggestion for today for Rare Disease Day is an important one and easy to do.<br /><br />Click the link below, fill in the information, and your done. By signing this form you will become an Ambassador for Rare Disease Day and you will be supporting NORD for all that they do for us to bring awareness to Rare Diseases. This will also bring exposure for Cryoglobulinemia Vasculitis because you will be asked what organization you are associated with. We have signed in as a Partner. They know us know. LET THEM HEAR YOUR VOICE!<br /><br />It will only take a a couple minutes to fill in your name and organization. Please fill in Cryoglobulinemia Vasculitis Organization for yourself and all those who suffer with our disease. Thank You *Marianne*</span></h6>
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<a aria-hidden="true" class="external UIImageBlock_Image UIImageBlock_MED_Image" data-ft="{"type":41}" href="http://rarediseaseday.us/take-action-now/become-a-partner/" rel="nofollow" style="color: #3b5998; cursor: pointer; float: left; margin-right: 10px; text-decoration: none;" target="_blank" title=""><img alt="" class="img" src="https://s-external.ak.fbcdn.net/safe_image.php?d=AQA9oHlOYKrfZS44&w=90&h=90&url=http%3A%2F%2Frarediseaseday.us%2Fwp-content%2Fthemes%2Frdd12%2Fimages%2Fui%2Flogo-fb.jpg" style="border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; display: block; max-height: 90px; max-width: 90px;" /></a><div class="UIImageBlock_Content UIImageBlock_MED_Content fsm fwn fcg" style="color: grey; display: table-cell; vertical-align: top; width: 10000px;">
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<strong><a href="http://rarediseaseday.us/take-action-now/become-a-partner/" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Become a Partner or Ambassador « Rare Disease Day USA</a></strong></div>
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Rare Disease Day is about realizing the similarities among all individuals impacted by rare diseases. By working together we can raise awareness and create a global impact. Whether you are an individual or part of an organization, we want you to show your support by becoming a Partner or Ambassador.</div>
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</div>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-28123627177337732992012-02-16T08:51:00.000-05:002012-02-16T08:51:05.011-05:00RARE DISEASE DY FEBRUARY 29TH, WHAT YOU CAN DO FROM HOME<br />
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Today I would like to bring your attention to Letters to the Editor for Rare Disease Day Awareness. This is a sample letter you can print out and send to the editor of your local newspapers. Click the link and open the first link, letter to the editor.<br /><br /><a href="http://rarediseaseday.us/take-action-now/press-kit/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://rarediseaseday.us/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>take-action-now/press-kit/</a><br /><br />If you have extra time browse through this page and see all that we have been supplied with to do our part for Rare Disease Day. Along we are Rare. Together we are Strong.</h6>
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Marianne</h6>
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Cryoglobulinemia Vasculitis organization</h6>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-8253675179954538362012-02-16T08:43:00.000-05:002012-02-16T08:43:05.587-05:00RARE DISEASE DAY - MAKE A DIFFERENCE FROM YOUR HOME<br />
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Write Your Reps<br /><br />Information is provided for you to search for your representatives on this page. THIS ONE IS REALLY IMPORTANT!<br /><br />As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the issues they will be able to make better decisions for the constituents they serve.<br /><span class="text_exposed_hide">...</span><span class="text_exposed_hide"><span class="text_exposed_link" style="display: block; padding-bottom: 0px; padding-left: 0px; padding-right: 12px; padding-top: 4px; white-space: nowrap;"><a href="" style="color: #3b5998; cursor: pointer; text-decoration: none;">See More</a></span></span></div>
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<strong><a href="http://rarediseaseday.us/take-action-now/write-your-reps/" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">Write Your Reps « Rare Disease Day USA</a></strong></div>
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As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the iss...</div>
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<span style="color: red;">MARIANNE VENNITTI</span></div>
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<span style="color: red;">CRYOGLOBULINEMIA VASCULITIS ORGANIZATION</span></div>
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<span style="color: red;">CVO - ASSISTANT DIRECTOR</span></div>
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<span style="color: red;">MRSMVENNITTI@GMAIL.COM</span></div>
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</div>CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0tag:blogger.com,1999:blog-5535338346868770140.post-11289331795037788842012-02-13T11:28:00.000-05:002012-02-13T11:28:36.166-05:00NEVER GIVE UP - EVER<br />
I'm excited to share the good news.<br />
<br />
This morning I received a call from my oncologist telling me that my blood test for Cryoglobulinemia Vasculitis came back NEGATIVE. This means that the LAB TEST was unable to detect any Cryoglobulins in my blood. It does not mean there aren't any. It does mean they have reduced enough to give me a negative reading. And that is great news. I actually have had 3 incredibly awesome weeks and I feel like my body is getting stronger and healthier. I still don't know what tomorrow will bring with all the complications but for today I finally have made progress after living with constant fear for the last 3 years and living like I was dying.<br />
<br />
Never ever did I feel I would think about tomorrow.<br />
Never did I think I would see normalcy of any kind.<br />
Never did I think I would see joy in my husbands eyes.<br />
Never did I think my body could recover.<br />
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So today I offer you a RAY OF HOPE for wherever you are on your journey<br />
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Never ever give up.<br />CryoLady-Careshttp://www.blogger.com/profile/17436255870522264139noreply@blogger.com0