tag:blogger.com,1999:blog-38481742009242909442024-03-12T15:04:13.354-07:00Be a light, CFS awarenessThoughts, reflections, and facts about Chronic Fatigue Syndrome.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-3848174200924290944.post-90075562475950642852011-09-27T21:26:00.000-07:002011-09-27T21:28:48.560-07:00this is not a poem.it's been a run on sentence kind of day<br />
a couple of days ago i took a heavy clunk to the head<br />
which is up there on the list of<br />
<i>really bad things that should not happen to someone with a neurological disease</i><br />
and found myself dyslexically writing certain letters of the alphabet backwards afterwards.<br />
troubling. <br />
<br />
i am too sad to write.<br />
maybe it's the year of the rabbit, which is said to take issue with my kind.<br />
maybe it's pms. <br />
maybe it's that life is so damn hard all the time.<br />
it's so hard sometimes, that All i can do is write.<br />
and spit it out onto paper<br />
like puddled black spattered ink.<br />
as if it's my comment on this shitty day.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com25tag:blogger.com,1999:blog-3848174200924290944.post-41316180173165666842011-07-17T09:51:00.000-07:002011-07-20T09:44:20.529-07:00sunshine made from raintoday, i've been teetering along tears <br />
i don't know what or why<br />
to stay in bed<br />
or get into a car and go<br />
go somewhere that might take me away.<br />
<br />
there's a grief inside me<br />
though i don't know its name<br />
it reaches up into my throat<br />
with its clenched fist<br />
making it difficult to swallow.<br />
<br />
the cluck cluck of chickens<br />
comes through the open window<br />
floating in from the farm<br />
it's magic born from sadness and suffering<br />
it's sunshine made from rain.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com5tag:blogger.com,1999:blog-3848174200924290944.post-80465088516138547312011-07-15T13:50:00.000-07:002011-07-15T13:50:45.698-07:00sometimesi look over at my favorite pair of shoes<br />
once white<br />
now that faded farm stained color<br />
no laces<br />
and frayed<br />
around every exposed edge<br />
<br />
and i think,<br />
i know exactly how you feel.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com3tag:blogger.com,1999:blog-3848174200924290944.post-41753814581602272472011-07-06T09:07:00.000-07:002011-07-06T09:07:52.316-07:00writing about cfs"It isn't just my story that I am telling though I am here to tell it. It is the story of millions of people. It is a story that has been hidden instead of shared to its demise. Its invisibility has only perpetuated its mistreatment. "<br />
<br />
With all of the news coming out around Chronic Fatigue Syndrome (CFS) I felt it was time to tell my own experience with having this disease for the past 16 years. I've written an autobiographical short story: http://bealightcfsawareness.blogspot.com/2010/09/short-story-written-and-told-from.html.<br />
<br />
Please let me know any thoughts, ideas, critiques on this piece of work. I do believe that these stories need to be out there. People are reading about the evolving science, but don't necessarily understand the significance without understanding the experience. <br />
<br />
Sincerely,<br />
Amberlin Wu<br />
<br />
MV Voice<br />
OMVNA<br />
NPR<br />
oprah<br />
new yorker<br />
<br />
sun magazine?<br />
new york times?Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com2tag:blogger.com,1999:blog-3848174200924290944.post-14402183806967354762011-06-24T10:26:00.001-07:002011-06-24T10:26:36.513-07:00A Perched MiracleI saw a miracle yesterday.<br />
It wriggled in under the door frame<br />
before the heat of the day had settled in.<br />
<br />
It stretched its willowy wings<br />
perched on the foot of my bed<br />
and looked softly into my pained eyes<br />
<br />
A promise, it said<br />
that despite the forever it's been<br />
of viral warfare<br />
in twisted, knotted nerves<br />
and what they say about there being no cure<br />
and all that has been taken away<br />
<br />
The brightest of lights lie ahead.<br />
This, I promise you.<br />
<br />
It gave me a squeeze on the shoulder<br />
the reassuring kind<br />
that tells you to believe<br />
and in a twirling trail of hearts<br />
opened the door and left.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com4tag:blogger.com,1999:blog-3848174200924290944.post-66492190150163275572011-06-04T11:41:00.000-07:002011-09-25T22:29:12.128-07:00In Ecuador<h3 class="post-title entry-title"></h3><div class="post-header"></div>Waterfall spatter<br />
across my sun shined face<br />
riding past the craggy granite <br />
in the wild rainforest <br />
<br />
With heavenly wings<br />
I am a dandelion seed<br />
carrying precious wishes on wind<br />
a floating feather<br />
dancing in the spray <br />
of cold Ecuadorian clean<br />
<br />
Racer back tank<br />
camel back bag<br />
I stand to lean into the pedals<br />
"Let's go faster!"<br />
<br />
A memory,<br />
my memory<br />
of before<br />
living under the shelter <br />
of down and linens<br />
Propped pillows and a laptop.<br />
<br />
It's soot colored clouds today. <br />
The window pane says<br />
"Burr, it's cold."<br />
I guess I'll stay in<br />
maybe check the forecast.<br />
<br />
published on voxpoetica.com 2011Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-85331606511112043842011-05-30T13:23:00.000-07:002011-05-30T13:23:24.573-07:00Advocacy Success in San Franciso!<span style="color: black; font-family: arial; font-size: x-small;"><div><span style="color: black; font-family: Times New Roman;"><i>PRENOTE: A second small yet successful demonstration for the rights of people with ME/CFS was just held. A key goal of these mini-demos is to inspire more of the same; we hope you (those who are able) will hold a mini-demo, too. Only 1-5 people are needed to pull one off, get some press attention and make some waves. Make your own signs, or we can send you our pre-made 25-foot banner. All 3 goals of this Mini-Demo Strategy are found below.<br />
<br />
</i>WHO CAME: On May 25, 2011, an ME/CFS public demonstration was held in front of the U.S. Department of Health and Human Services (HHS) Region 9 headquarters, in San Francisco, California. </span><span style="color: red; font-family: Times New Roman;">Despite the rain, eleven people came: two people with ME/CFS, Susan Kreutzer and Andy Au; three family members (mother, mother-in-law, spouse), including the protest co-organizer, Bobbi Ausubel; and six able-bodied friends. The multicultural group included people of Asian, Latino and Caucacasin decent, gay and straight, young adult and seniors. </span><span style="color: black; font-family: Times New Roman;">The people with ME/CFS came in spite of all the obstacles and barriers this illness throws in their way.<br />
<br />
SETTING UP: At 1:30 pm, the protesters positioned themselves on the busy, highly trafficked sidewalk in front of HHS Region 9, also known as the Federal Building. They unfurled a 25-foot banner that read: "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" (This banner was first used on May 10th at HHS national headquarters in Washington DC:</span><span style="color: blue; font-family: Times New Roman;"><u> <a href="http://cfspatientadvocate.blogspot.com/2011/05/hhs-demonstration-may-" target="_blank">http://cfspatientadvocate.<wbr></wbr>blogspot.com/2011/05/hhs-<wbr></wbr>demonstration-may-</a><span></span>10-2011.html</u></span><span style="color: black; font-family: Times New Roman;"><wbr></wbr>).</span><br />
</div><div style="color: black;"><span style="color: black; font-family: Times New Roman;">SECURITY: Security came out immediately in the form of one person. He appeared to be the Head of Security for the Federal Building/HHS. Bobbi told him what they were doing and how she had been told by the city police that they could be on the sidewalk without a permit, as long as they didn't have a loudspeaker. The security officer agreed, took some of the demonstrators' literature and went back inside. It was all very relaxed.</span></div><div><span style="color: black; font-family: Times New Roman;"><br />
PRESS: The protest co-organizers, Bobbi and Rivka, a mother/daughter team, had spent the days prior reaching out to the press. Success! The New York Times reporter who has covered ME/CFS in the past came "to say hi" (no article expected, but good to keep relations going) and a San Francisco Chronicle reporter and cameraperson came as well. The resulting article is found here:</span><span style="color: blue; font-family: Times New Roman;"><u> <a href="http://www.sfgate.com/cgibin/article.cgi?f=%2Fc%2Fa%2F2011%2F05%2F25%" target="_blank">http://www.sfgate.com/cgibin/<wbr></wbr>article.cgi?f=%2Fc%2Fa%2F2011%<wbr></wbr>2F05%2F25%</a><span></span>2FBANA1JL1AH.DTL</u></span><span style="color: black; font-family: Times New Roman;"> Though this article was disappointing in the usual ways, its publication was still good news, as </span><span style="font-family: Times New Roman;"><span style="color: red;">the SF Chronicle is one of the largest papers in the region. Plus, the reporter said she hoped to do an additional story on kids with ME/CFS. And to our knowledge, this is the first time an ME/CFS protest has made news in the U.S.</span><br />
<br />
ACTIONS: Standing in front of HHS with the banner for 1 hour, the protesters videotaped prepared and spontaneous statements (see resulting video), handed out flyers to passers-by and in a surprise action sang the song, "Clinical trials now!" (Also seen in this 2010 video:</span><span style="color: blue; font-family: Times New Roman;"><u> <a href="http://www.youtube.com/watch?v=8t1Xqp1LDxM" target="_blank">http://www.youtube.com/watch?<wbr></wbr>v=8t1Xqp1LDxM</a></u></span><span style="color: black; font-family: Times New Roman;">).<br />
<br />
HHS MEETING: </span><span style="color: red; font-family: Times New Roman;">Also surprising, after the demonstration, there was a group meeting for a half hour with Eric Alborg, Regional Outreach Specialist of HHS's Region 9. </span><span style="color: black; font-family: Times New Roman;">His boss, who was out of the country, is Herb Schultz, the Regional Director of Region 9. In the hierarchy, Alborg is positioned directly under Schutlz. (Alborg's job main is to implement the new health care program.) Alborg had thought he'd be meeting with just one person, Bobbi, and had not known about the demo in advance. But after checking with someone (we don't know who), he agreeded to meet with the whole group, that is, the two protesters who have ME/CFS and their three family members. Alborg was open to listening and wanted to know why the protesters were there. People talked about the concerns and needs of people with ME/CFS (funding and clinical trials!). The demonstrators put the struggle regarding ME/CFS in the context of HIV/AIDS, linking the possible retrovirus connection (XMRV). This discussion made sense since HIV is historically a key issue in San Francisco, due to a large and politically active gay community. The protesters emphasized to Alborg that HHS should have an understanding of the politics of all this, due to HIV/AIDS. They also told him that the information about this demo, and the meeting with him, would not be limited to the small group he was presently gathered with, but would be rapidly disseminated all around the globe via the internet, and that ME/CFS was an issue that was not going to go away.</span></div><div><span style="font-family: Times New Roman;"><br />
<span style="color: red;"> Alborg's suggestion to the protesters: 1) Call/lobby local institutions and legislators; 2) build coalitions with groups with other disabilities and chronic illnesses -- groups that have already-established power and influence. (Though he did not say it, one protester went away thinking HIV/AIDS and Autism groups).</span><br />
<br />
Bobbi gave Alborg copies of a letter she had written with her own personal statement on top, followed by a list of basic needs/demands from our ME/CFS community. Bobbi's letters were addressed to HHS Secretary Sebelius, NIH Director Collins, NIAID Director Fauci and Schultz (Head of HHS Region 9). Alborg promised to make sure the letters were given to each.</span></div></span>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com2tag:blogger.com,1999:blog-3848174200924290944.post-54098283935201013302011-05-18T14:43:00.000-07:002011-05-18T22:50:22.630-07:00This sort of thing isn't supposed to happen to angelsAs I have proceeded through 17 years of having CFS, I have encountered more and more individuals who also suffer from this terrible disease. I have had conversations with people who struggle to have the will to keep going even one more day, seen videos of people who cannot roll over in bed or even speak, people who have not left their homes for decades or have had to move from one home to another year after year because of financial dilemmas that have resulted from this disabling illness. Chronic Fatigue Syndrome is among the cruelest of diseases. There are no words to capture how it takes that moment where the train goes off the tracks, crashing into the earth in flames and makes that moment every moment of your life.<br />
<br />
All of this is terrifying to an undefinable degree, but what is most amazing to an equally undefinable degree, is that these same people are consistently the kindest, most generous, caring people I have ever encountered. I see people reach out to others they have never even met with the care and love of a parent or a partner. I see a connection and sense of community, where we are all acknowledging one another's brilliant and bright existence, outside and in spite of this illness. I don't know if CFS simply strikes the bright and the kind, or if the experience makes us so. Regardless, I wanted to share this with all of you who have CFS, and also those of you who don't and may not have the privilege of bearing witness to this community of humanitarians.<br />
<br />
A final thought. It strikes me in my heart whenever I hear of another person with CFS that this sort of thing isn't supposed to happen to angels.<br />
But it does.<br />
Millions of them.<br />
And as an angel would, these people gracefully spread their wings and continue to fly about the earth doing what angels do.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com10tag:blogger.com,1999:blog-3848174200924290944.post-42827009580291510882011-05-11T19:55:00.000-07:002011-05-13T13:25:18.555-07:00HAVE YOU NO SENSE OF DECENCY?<span style="font-size: 14pt;">"To the CDC and NIH scientists who’ve been doing this ludicrous research for three decades and sweeping a worldwide human catastrophe of 17 million people under the carpet, I say to you: Have you no sense of decency at long last?" </span><br />
<span style="font-size: 14pt;">by Mindy Kitei, a science reporter who's covered ME/CFS for 20 years</span><br />
<br />
<span style="font-size: 14pt;"><span style="color: #351c75;">To read this fiery, frighteningly true article about the gravity of the disease and the levity with which it is dealt go to: </span></span><a href="http://www.cfscentral.com/2011/05/next-manhattan-project.html"><span style="font-size: 14pt;"><span style="color: #351c75;">http://www.cfscentral.com/2011/05/next-manhattan-project.html</span></span></a><br />
<br />
<span style="font-size: 14pt;"><span style="color: #351c75;">Thank you for telling it how it is, Mindy.</span></span><br />
<br />
<span style="font-size: 14pt;"><span style="color: #351c75;"> </span></span><span style="font-size: 14pt;"><span style="color: #351c75;"></span></span><span style="font-size: 14pt;"> </span>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-6600699661253372732011-05-07T12:21:00.000-07:002011-05-11T08:10:26.952-07:00May is ME/CFS Awareness Month!<h3 class="UIIntentionalStory_Message" data-ft="{"type":"msg"}"><span class="UIStory_Message">MAY IS ME/CFS AWARENESS MONTH! </span></h3><h3 class="UIIntentionalStory_Message" data-ft="{"type":"msg"}" style="font-weight: normal;"><span class="UIStory_Message">Put a ribbon on your Facebook profile picture to show your support!</span></h3><h3 class="UIIntentionalStory_Message" data-ft="{"type":"msg"}" style="font-weight: normal;"><span class="UIStory_Message"> </span><a href="http://app.pebly.com/fribbon/group.php?gid=12521&ref=nf_t" rel="nofollow" target="_blank"></a><a href="http://stickers.pebly.com/group/12521/CFS-ribbon-Profile-Sticker">http://stickers.pebly.com/group/12521/CFS-ribbon-Profile-Sticker</a></h3><h3 class="UIIntentionalStory_Message" data-ft="{"type":"msg"}" style="font-weight: normal;"></h3><h3 class="UIIntentionalStory_Message" data-ft="{"type":"msg"}" style="font-weight: normal;"><br />
<span class="UIStory_Message">***Once you have placed it on your photo, YOU NEED TO GO INTO YOUR PHOTOS AND CHOOSE THE NEWLY RIBBONED PHOTO AS YOUR PROFILE PICTURE. (sorry for shouting, it's just that everyone misses that part.)<br />
Make the invisible VISIBLE! </span></h3><h3 class="UIIntentionalStory_Message" data-ft="{"type":"msg"}" style="font-weight: normal;"><span class="UIStory_Message">xo♥ amberlin</span></h3><div class="UIStoryAttachment" data-ft="{"type":"attach"}" id=""><div class="UIStoryAttachment_Info "><div class="UIStoryAttachment_BlockQuote"><div class="UIStoryAttachment_Title"><a href="http://app.pebly.com/fribbon/group.php?gid=12521&ref=nf_t" rel="nofollow" target="_blank"><br />
</a></div></div></div></div>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com2tag:blogger.com,1999:blog-3848174200924290944.post-60296388180772925432011-05-06T23:58:00.001-07:002011-05-06T23:58:56.980-07:00One man's deciding to come "out of the closet" with CFS"Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for <i>National Geographic</i>. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer <a href="http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=symptoms" target="_hplink">CFS means</a> a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a <a href="http://www.cdc.gov/cfs/general/symptoms/index.html" target="_hplink">state of health</a> more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis. " - John Falk<br />
<br />
To read the article, click here:<br />
<a href="http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html">http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html</a>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-84662026473809458662011-05-06T23:57:00.001-07:002011-05-06T23:57:27.876-07:00Dr. Andreas Kogelnik’s Talk on Re-Evaluating Chronic Fatigue Syndrome and ImmunologyThis is an extremely thorough summary of Dr. Kogelnik’s talk “Re-Evaluating Chronic Fatigue Syndrome and Immunology” at El Camino Hospital in Mountain View on April 19, 2011.<br />
<br />
<a href="http://thoughtsaboutme.wordpress.com/2011/04/22/dr-andreas-kogelnik-re-evaluating-chronic-fatigue-syndrome-and-immunology/">Re-Evaluating CFS and Immunology</a>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-69779831500922440872011-05-06T23:56:00.001-07:002011-05-06T23:56:28.077-07:00An Interview with Laura Hillenbrand<div class="MsoNormal"><a href="http://www.naturalsolutionsmag.com/articles-display/15878/keyword/hillenbrand/Living-with-Chronic-Pain"><span style="color: windowtext;">http://www.<wbr></wbr>naturalsolutionsmag.com/<wbr></wbr>articles-display/15878/<wbr></wbr>keyword/hillenbrand/Living-<wbr></wbr>with-Chronic-Pain</span></a></div><div class="MsoNormal"> <wbr></wbr> </div><div class="MsoNormal">Some excerpts:</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><strong><span style="color: black; font-size: 10pt;">What advice would you give to others out there who suffer from ME/CFS?</span></strong><span style="color: black; font-size: 10pt;"><br />
The most important thing I have learned in my 24 years with this disease is to listen to my body. Everyone with this disease has different boundaries, and we find out through trial and error where they are. It’s critical to know where they lie, because when ME/CFS patients overextend themselves, the result can be utterly disastrous. Several times, I have overdone it, leaving myself bedridden and desperately ill for years. Because many patients have been accused of merely being “lazy”—something I heard all the time in my first years with ME/CFS— they often push themselves too hard to prove they aren’t malingering. I did this myself, and paid dearly for it. So my advice is to always put your body first, listen to what it is telling you and respect those signals.</span></div><div class="MsoNormal"><br />
</div><strong><span style="color: black; font-size: 10pt;">What are some natural treatments and/or ways you use to cope with </span></strong><span style="color: black; font-size: 10pt;"><br />
<strong><span>ME/CFS?</span></strong><br />
I’ve been doing yoga for about a decade now, and it has been a godsend to me. Even when I’m quite ill, there are a few poses I can still do, and it’s wonderful for my body, keeping it flexible and maintaining muscle tone. It’s even better for the mind. Yoga relaxes me, alleviates stress, and quiets my thoughts. There is a beautiful and nourishing mindset that attends yoga, focusing on acceptance of yourself and your situation, living in the moment, awareness of the interconnectedness of all things, and cultivating gratitude for your blessings. There is so much loss, so much anguish, and so much stress involved in being as ill as I am; yoga helps me cope with it and love my life and all I have been given.<br />
Along with yoga, I practice meditation. No matter how sick I am, I can always meditate, and it always refreshes me and fills me with optimism. In spite of what the disease does to me, I’m a very happy person, and I credit meditation for much of that. In my sickest years, I sometimes meditated three times a day.<br />
I am also careful about the chemicals that go into my body. I try to buy products that are natural. I buy products from companies like Loving Naturals, which sells products that are organic, simple, natural and absolutely safe. I try to do this especially with products I use every day, like moisturizers and lip balms. Also, we only use nontoxic, natural products in our home, because we don’t want to breathe in harsh chemicals, and we don’t want to pollute the environment.</span>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-71604023254493865392011-04-07T23:00:00.000-07:002011-04-09T15:17:09.584-07:00What We Give UpI tried to reach you tonight<br />
but you are probably already curled up with a book<br />
or doing some other winding down from the day activity.<br />
<br />
I heard this song today and was taken back to you<br />
the sadness seeped out from my heart<br />
which had been carefully locked with a promise <br />
that this would be best<br />
best for my ever so fragile health<br />
which could not bare to acknowledge the grief and loss<br />
of so many dreams.<br />
<br />
The tears came<br />
leaving salty trails<br />
down my cheeks.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-666183494204828782011-03-23T21:00:00.000-07:002011-03-24T18:46:07.380-07:00I Should have died on SundayThe poison wasn't strong enough<br />
or the air was too fresh<br />
but i should have died on sunday.<br />
<br />
and now<br />
<br />
i take the gossamer threads of my life<br />
made of the laughing sea<br />
and the reflection of scarlet lady bug wings<br />
in the eyes of those who still believe in magic<br />
and i wrap them<br />
carefully<br />
slowly<br />
it hurts<br />
i burn<br />
it aches<br />
gently<br />
i wrap them about me<br />
weaving<br />
weaving<br />
in a cocoon<br />
a shell<br />
so tightly woven<br />
that only the light can seep through.<br />
<br />
i will wait here.<br />
for the pain to stop throbbing<br />
for my heart to start beating<br />
for my soul to start breathing<br />
<br />
you cannot catch me<br />
in your black, tarred depression<br />
i will merely<br />
slip out of my ballet shoes<br />
let you devour them <br />
and return to my cocoon<br />
until<br />
i have returned to myself.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com7tag:blogger.com,1999:blog-3848174200924290944.post-66926606205167980632011-02-21T21:55:00.000-08:002011-03-09T02:06:08.992-08:00A Blessing for a Friend on the Arrival of Illness<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><b><span style="font-size: medium;">by John O'Donohue</span></b><br />
<br />
</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Now is the time of dark invitation<br />
Beyond a frontier that you did not expect;<br />
Abruptly, your old life seems distant.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">You barely noticed how each day opened<br />
A path through fields never questioned,<br />
Yet expected deep down to hold treasure.<br />
Now your time on earth becomes full of threat;<br />
Before your eyes your future shrinks.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">You lived absorbed in the day to day,<br />
So continuous with everything around you,<br />
That you could forget you were separate;</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Now this dark companion has come between you,<br />
Distances have opened in your eyes,<br />
You feel that against your will<br />
A stranger has married your heart.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">Nothing before has made you<br />
Feel so isolated and lost.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">When the reverberations of shock subside in you,<br />
May grace come to restore you to balance.<br />
May it shape a new space in your heart<br />
To embrace this illness as a teacher<br />
Who has come to open your life to new worlds.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">May you find in yourself<br />
A courageous hospitality<br />
Towards what is difficult,<br />
Painful and unknown.<br />
<br />
</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;"><br />
</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">May you use this illness<br />
As a lantern to illuminate<br />
The new qualities that will emerge in you.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">May the fragile harvesting of this slow light<br />
Help you to release whatever has become false in you.<br />
May you trust this light to clear a path<br />
Through all the fog of old unease and anxiety<br />
Until you feel arising within you a tranquility<br />
Profound enough to call the storm to stillness.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">May you find the wisdom to listen to your illness:<br />
Ask it why it came? Why it chose your friendship?<br />
Where it wants to take you? What it wants you to know?<br />
What quality of space it wants to create in you?<br />
What you need to learn to become more fully yourself<br />
That your presence may shine in the world.</span><br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">May you keep faith with your body,<br />
Learning to see it as a holy sanctuary<br />
Which can bring this night-wound gradually<br />
Towards the healing and freedom of dawn.<br />
<br />
May you be granted the courage and vision<br />
To work through passivity and self-pity,<br />
To see the beauty you can harvest<br />
From the riches of this dark invitation.<br />
<br />
May you learn to receive it graciously,<br />
And promise to learn swiftly<br />
That it may leave you newborn,<br />
Willing to dedicate your time to birth.</span>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com3tag:blogger.com,1999:blog-3848174200924290944.post-82042947296861267552011-02-13T10:27:00.000-08:002011-03-09T02:08:07.522-08:00I've been asked to write a paragraph about living with CFS.My life with CFS was kicked off with a harrowing 3 months of pneumonia. I tried to pretend it wasn't happening by continuing pre-med classes, and dance, only to find myself in bed and in bone cracking pain at every minute I wasn't in lab or rehearsal. Slowly, piece by piece I watched the things that made my life mine fall away. Instead, it became doctors that didn't believe me, living back at home and wishing my parents a good time when they went out dancing at age 22. I broke down in anger and tears weekly, trying to cry out the unfairness. That was 16 years ago. CFS and I have a different relationship now. I realize it has sent my life down a very unusual path, one with unrelentless suffering, but also one that gives a person a lot of time to think and watch how people live. This horrific disease has given me the opportunity to really put together how and who I want to be, and that, oddly enough, has been precious.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-71601522604885537482011-02-10T10:28:00.000-08:002011-03-09T02:07:20.518-08:00What do you do when you are too sick to do anything.<span data-jsid="text"><div class="text_exposed_root text_exposed" id="id_4d54408b343716106107400">I have had CFS for 16 years and more than anything, I think it is a challenge of endurance. I have taken up full time employment in being happy. I ask myself throughout the day, what will make me feel even a wee bit better? and that's what <span class="text_exposed_show">I do. I have a million hobbies that come and go. It's different for everyone, what brings you joy, but I do feel it is essential. It takes the spirit of a warrior to carry on under such circumstances. </span><br />
<span class="text_exposed_show">a bit of writing.</span><br />
<span class="text_exposed_show">a work in progress of course...<br />
<br />
I am in fierce pursuit of joy.<br />
I write.<br />
I paint.<br />
I play guitar<br />
and then I don't for months and months.<br />
Sometimes it just looks too heavy over there<br />
propping itself up against the wall.<br />
<br />
I share my story<br />
I believe that purpose can be made of all of this suffering.<br />
I photograph my chickens as each finds her way to bed at sunset.<br />
They make me laugh.<br />
They know how important it is<br />
to remember that life is not so serious.<br />
<br />
Somedays, it's still hard.<br />
Of course it is.<br />
<br />
Other days, I plant a fresh crop of arugula<br />
curl up in a sleeping bag </span><br />
<span class="text_exposed_show">on the backyard bench<br />
and see the water colored sky<br />
over the puddles on the nasturtium<br />
and know that rarely have I been better. </span></div></span>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com4tag:blogger.com,1999:blog-3848174200924290944.post-9007738877667475752010-12-06T10:54:00.000-08:002011-03-09T02:08:40.137-08:00Cover Story in this week's Mountain View VoiceDecember 2, 2010<br />
<br />
'Some days are worse than others, and today isn't the worst, but it is far from a good day. Since she first began noticing symptoms, she has had periods -- which can last for months -- when she has felt right as rain. Of late, however, she hasn't left the house, or her bed, much at all.<br />
<br />
"I don't have any plans," she says in exasperation. "Everything I've ever planned in my life got cancelled."'<br />
<br />
To read the article, click here: <br />
<a href="http://www.mv-voice.com/news/show_story.php?id=3673">Sick and Tired of Being Sick and Tired</a> by Nick VeroninJust a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-72911197171484707142010-11-29T15:31:00.000-08:002010-11-29T15:33:26.595-08:00Laura Hillebrand, author of Seabiscuit, sufferer of CFS speaks out.<div class="uiAttachmentTitle"><span style="font-family: Arial; font-size: small;">"'You have Chronic Fatigue Syndrome,' he said. He explained that it was one of the most frustrating illnesses he had encountered in his practice; presented with severely incapacitated patients, he could do very little to help them. He suspected that it was viral in origin, although he believed that the Epstein-Barr virus was not involved; early lab tests had liked the virus to Chronic Fatigue Syndrome, but subsequent research had demonstrated that some patients had had no exposure to the virus. He could offer no treatment. Eventually, he said, some patients recovered on their own. </span> <br />
<span style="font-family: Arial; font-size: small;">'Some don't?' </span> <br />
<span style="font-family: Arial; font-size: small;">'Some don't.' </span> <br />
<span style="font-family: Arial; font-size: small;">That night, for the first time since March, I didn't dream of being an athlete. I dreamed of being ill. In my dreams, I was never healthy again."</span><br />
<span style="font-family: Arial; font-size: small;"> </span> <br />
<b> - from <a href="http://www.cfids-cab.org/MESA/Hillenbrand.html" rel="nofollow" target="_blank">A Sudden Illness - How My Life Changed, by Laura Hillenbrand</a></b> </div><a href="http://www.cfids-cab.org/" rel="nofollow" target="_blank">www.cfids-cab.org</a>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-14141471751655452712010-11-28T17:31:00.000-08:002011-03-09T02:09:15.004-08:00Newsweek addresses legitimacy of CFS<h2 class="subhead">For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.</h2><br />
http://www.newsweek.com/2010/11/28/could-a-virus-cause-chronic-fatigue-syndrome.html#Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-21494881117961759142010-11-05T11:29:00.000-07:002011-03-09T02:10:05.936-08:00I am trying to remember<div class="mbl notesBlogText clearfix"><div>I am trying to remember<br />
what life was like before CFS.<br />
how it was to<br />
do things<br />
watch things<br />
climb things<br />
without worry or concern.<br />
<br />
I'm trying to remember what it was like<br />
never to have to construct a plan B and an emergency kit<br />
for every outing<br />
to say "Yes, I'd love to!" to any invitation<br />
to dance to pounding loud music<br />
or float across the floor in a ballgown<br />
to hike up mountains<br />
and feel the strain and glorious pain in my legs<br />
rewarded by magical, far reaching views<br />
to swim in the cool of the ocean<br />
and feel the water wash through me.<br />
<br />
to be in crowds of people and hear the hush<br />
before something wonderful is about to happen<br />
to be in a swarm of people and language that is different<br />
dizzy from the richness of a life and enthusiasm<br />
painted by a different palette of colors.<br />
<br />
I think it's freedom that I remember.<br />
<br />
And what will I remember from now?<br />
I hope to remember the freedom to live by my own clock,<br />
exempt from the frenzy of silicon valley speed.<br />
I hope to remember a life brimming<br />
of art, animals and love.<br />
A connecting of people with hearts<br />
passionate about a common goal<br />
the healing of me,<br />
the healing of all of us.<br />
Of squeezing the life out of each day<br />
even if it's watching the sky stroll by my bedroom window<br />
A living of paying close attention to myself, to others<br />
and making decisions mindfully and in my own time.<br />
That however hard they spin you, tornadoes pass<br />
and love will find you wherever you may be tucked away.<br />
<br />
I hope I will remember. </div></div>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com3tag:blogger.com,1999:blog-3848174200924290944.post-21777518059023627172010-10-18T17:29:00.000-07:002010-11-05T11:07:37.282-07:00just weatheri am the sky.<br />
<br />
and the feelings<br />
the huge feelings<br />
that rattle in my heart<br />
and shake the very roots from which i grow<br />
mere thunderstorms passing through.<br />
<br />
how easily we are fooled into believing<br />
thoughts carelessly grafittied on the walls of our minds.<br />
<br />
how carefully we must remember to remember.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com0tag:blogger.com,1999:blog-3848174200924290944.post-25095384269173964692010-10-04T21:08:00.000-07:002010-10-09T10:52:16.420-07:00What Were You Taught in Med School about CFS?A dear friend just wrote me that she has been reading all of my facebook posts. She said that they really helped her understand more about the disease and made her a better doctor. She said she was disgusted with what she was taught in med school. So I asked, her,<br />
"What were you taught?"<br />
"You're not going to like it," she started out.<br />
"We were (and I bet most med students still are) taught that people with CFS, fibro, vuvlodynia, interstitial cystitis, etc - are basically crazy people with a psych problem and some physical components."<br />
(Chicago Medical School, circa 2005)<br />
<br />
It all starts to make sense.Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com1tag:blogger.com,1999:blog-3848174200924290944.post-80602093718637736752010-10-01T15:47:00.000-07:002010-10-09T10:52:51.358-07:00The most recent shockingly unsurprising, appalling visit to the emergency room<div class="clearfix"><div class="mbs uiHeaderSubTitle lfloat fsm fwn fcg">written on September 19, 2010 at 12:48pm</div><div class="mbs uiHeaderSubTitle lfloat fsm fwn fcg"></div></div><div class="mbl notesBlogText clearfix"><div>I'm weakened from the most recent episode at the ER where they treated me like crap as soon as they heard that I have CFS. They shot me up with all kinds of pain meds for my brain shattering 30+ hour migraine and bone cracking body pain. None of them worked, but only made me super drugged out and then they literally threw me out in less than ten minutes after giving me the last shot.<br />
<br />
The ER doc told me that my health problems were not viral (Does anyone in the medical field read the science section of the frikkin news???!? CHRIST!) and needed to be "dealt with at home." Infuriating.<br />
<br />
So my hope is I tell all of you about this and you tell everyone you know and maybe it leaks out to doctors so they treat all of these very sick and suffering people with some dignity.<br />
<br />
Private pain -> public purpose.<br />
<br />
Thanks.</div></div>Just a Puppy in the Mudhttp://www.blogger.com/profile/09390311492273932021noreply@blogger.com3