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	<title>CushieBlog &#187; Cancer</title>
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	<description>It&#039;s About Time There Was Support for Cushing&#039;s</description>
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		<title>Cushing&#8217;s and Cancer &#8211; the Reality of it all</title>
		<link>http://www.cushie.info/blog/2011/06/16/cushings-and-cancer-the-reality-of-it-all/</link>
		<comments>http://www.cushie.info/blog/2011/06/16/cushings-and-cancer-the-reality-of-it-all/#comments</comments>
		<pubDate>Thu, 16 Jun 2011 14:09:47 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[MaryO]]></category>

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		<description><![CDATA[This post is by Judy, a long-time message board member who is in the middle of Cushing&#8217;s patients.  Both children and her ex-husband have dealt with Cushing&#8217;s.  Judy is a Cushie-Blogger. She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html Okay, I&#8217;m probably ready to get politically incorrect here. Oh well. It seems that at least [...]]]></description>
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<p>This post is by Judy, a long-time <a title="message board" href="http://cushings.invisionzone.com/index.php" target="_blank">message board member</a> who is in the  middle of Cushing&#8217;s patients.  Both children and her ex-husband have  dealt with Cushing&#8217;s.  Judy is a <a href="http://cushie-blogger.blogspot.com/" target="_blank">Cushie-Blogger</a>.</p>
<p>She posted this on her blog at <a href="http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html" target="_blank">http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html</a></p>
<p>Okay, I&#8217;m probably ready to get politically incorrect here. Oh well.<br />
It  seems that at least once a day, sometimes many times a day,I see a post  on Facebook that in its short version says a cancer patient has just  one wish, that is to live. Repost&#8230;&#8230;.</p>
<p>I  have no doubt that is true. I have known several cancer patients &amp;  it is a real struggle and sometimes the outcome isn&#8217;t good  (understatement).</p>
<p>Now here is the *but* &amp; my own little personal rant.</p>
<p>A Cushing&#8217;s patient has many wishes.<br />
1. Finding a doctor that believes they can actually be sick, not just fat &amp; depressed (which happen to be <strong><em>symptoms</em></strong>)<strong>.</strong><br />
2. Having friends &amp; family that thought they were truly sick not just lazy.<br />
3.  Having enough energy to make it through the day and not being totally  exhausted whether they did or didn&#8217;t accomplish something that day.<br />
4.Being  able to find an understanding doctor that isn&#8217;t halfway across (or  clear across) the country. The same can be said of finding surgeons.<br />
5. Wanting their mind to be clear enough that they can keep up with their job &amp; their peers.<br />
6. Wishing their body was physically able to do just some of the simple tasks set before it.<br />
7. Wishing that they didn&#8217;t feel like they could throw up most of the day.<br />
8.  Praying they can get a nights sleep so they can make it through work  the next day. And that they didn&#8217;t have so much muscle &amp; bone pain.<br />
9. Wanting their mood swings to go away so they can keep up with their emotions.<br />
10. Praying (literally) that they live long enough to get a diagnosis.</p>
<p>This  list could go on &amp; on. The really sad part is that there were times  I wished my family had cancer. Getting a dx would of (usually) been so  much easier. Cancer doesn&#8217;t usually affect every system in the body. If  you get a cure from cancer you aren&#8217;t usually left with permanent damage  to random body systems.</p>
<p>Statistics  say that Cushing&#8217;s is rare. I know it&#8217;s not. As the Cushie community  says &#8211; it&#8217;s just rarely diagnosed. Most people think they don&#8217;t know  anyone with Cushing&#8217;s. Most people would be wrong. They just don&#8217;t know a  <strong><em>diagnosed</em></strong> Cushing&#8217;s patient.</p>
<p>That  overweight woman in front of you in the checkout line? The one that has  terrible mood swings? She might have Cushing&#8217;s. The coworker that  suddenly can barely do her job because she is so exhausted and has  terrible brain fog? She might also have Cushing&#8217;s. You know that girl at  school that now has arms so hairy it looks like fur? You know, the one  that also smells funky sometimes? Yeah, she probably has Cushing&#8217;s. You  laugh at her but you know what? This disease doesn&#8217;t discriminate. It  might be you someday wondering why the weight keeps piling on when you  barely have an appetite and work out every day.<br />
As  with the list of *wishes* I could go on &amp; on because Cushing&#8217;s  truly is the disease that keeps on giving &amp; giving &amp; giving.  Even after a cure (relative term) it still keeps on giving.</p>
<p>As a wonderful neurosurgeon has said &#8220;Cushing&#8217;s kills.&#8221; It just does it at a very slow, painful pace.</p>
<p><strong>MaryO&#8217;Note:</strong></p>
<p>This is fantastic, Judy.  Thanks for saying it!</p>
<p>I&#8217;ve often seen that stupid FB post and <em>haven&#8217;t</em> reposted it.</p>
<p>I am both a Cushing&#8217;s and a cancer survivor.  For me, the cancer was easier to deal with.</p>
<p>I have been dealing with Cushing&#8217;s and the after-effects since the early 1980&#8242;s.</p>
<p>All I&#8217;m left with after my cancer is a scar and some bad memories.</p>
<p>I think Sarah&#8217;s death got lots of us thinking.  We&#8217;ve seen so many unnecessary Cushing&#8217;s deaths and it just breaks my heart.</p>
<p>Judy, may I use this as a guest post on my Cushing&#8217;s and Cancer blog?  It&#8217;s perfect!</p>
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		<title>Amazing!  It&#8217;s Been 5 Years, Already.</title>
		<link>http://www.cushie.info/blog/2011/05/09/amazing-its-been-5-years-already/</link>
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		<pubDate>Mon, 09 May 2011 04:03:41 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[growth hormone]]></category>
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		<category><![CDATA[Alice Stamm (Dearest)]]></category>
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		<description><![CDATA[Amazing! It&#8217;s Been 5 Years, Already. Today is the Fifth Anniversary of my kidney cancer surgery.  These five years have been bonus years for me.  What were the odds I&#8217;d get kidney cancer? According to my &#8220;risk factors&#8221;, I &#8220;should&#8221; have had colon cancer because both parents and an aunt had it twice each.  Of [...]]]></description>
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<p><a href="http://cushings.posterous.com/amazing-its-been-5-years-already">Amazing!  It&#8217;s Been 5 Years, Already.</a></p>
<div>
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<p>Today is the Fifth Anniversary of my kidney  cancer surgery.  These five years have been bonus years for me.  What  were the odds I&#8217;d get kidney cancer? According to my &#8220;risk factors&#8221;,  I  &#8220;should&#8221; have had colon cancer because both parents and an aunt  had it  twice each.  Of course, there&#8217;s no guarantee that I won&#8217;t get  that,  too.</p>
<p>And the risk factors for kidney cancer aka renal cell carcinoma?The  majority of kidney cancers are renal cell carcinomas. Risk factors for  renal cell carcinoma include:</p>
<ul>
<li><strong>Age.</strong> Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.</li>
</ul>
<p><em>I was younger than this.</em></p>
<ul>
<li><strong>Sex.</strong> Men are more likely to develop renal cell carcinoma than women are.</li>
</ul>
<p><em>I am female</em></p>
<ul>
<li><strong>Smoking.</strong> Smokers have a greater risk of renal cell  carcinoma than nonsmokers do.  The risk increases the longer you smoke  and decreases after you quit.</li>
</ul>
<p><em>Not me!</em></p>
<ul>
<li><strong>Obesity.</strong> People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.</li>
</ul>
<p><em>A Cushing&#8217;s gift</em></p>
<ul>
<li><strong>High blood pressure (hypertension).</strong> High blood  pressure increases your risk of renal cell carcinoma, but it  isn&#8217;t  clear why. Some research in animals has linked high blood  pressure  medications to an increased risk of kidney cancer, but studies  in  people have had conflicting results.</li>
</ul>
<p><em>Never had this until the kidney cancer.  It went away immediately post-op.</em></p>
<ul>
<li><strong>Chemicals in your workplace.</strong> Workers who are  exposed to certain chemicals on the job may have a  higher risk of renal  cell carcinoma. People who work with chemicals such  as asbestos,  cadmium and trichloroethylene may have an increased risk  of kidney  cancer.</li>
</ul>
<p><em>What?  Me work?.</em></p>
<ul>
<li><strong>Treatment for kidney failure.</strong> People who receive  long-term dialysis to treat chronic kidney failure  have a greater risk  of developing kidney cancer. People who have a  kidney transplant and  receive immunosuppressant drugs also are more  likely to develop kidney  cancer.</li>
</ul>
<p><em>Nope.   Some sites also list  polycystic  kidney disease.  I don&#8217;t have that but  half my husband&#8217;s  family does.  Hmmm &#8211; wonder if that&#8217;s contagious</em></p>
<ul>
<li><strong>Von Hippel-Lindau disease.</strong> People with this  inherited disorder are likely to develop several kinds  of tumors,  including, in some cases, renal cell carcinoma.</li>
</ul>
<p><em>I&#8217;ve wondered about this but, you know, it&#8217;s too &#8220;rare&#8221;.</em></p>
<ul>
<li><strong>Hereditary papillary renal cell carcinoma.</strong> Having this inherited condition makes it more likely you&#8217;ll develop one or more renal cell carcinomas.</li>
</ul>
<p><em>Not that I know of. </em></p>
<p>I am so thankful for all my doctors but today I am thankful for Dr.   Amir Al-Juburi who saved my life by removing my kidney cancer (renal   cell carcinoma).</p>
<p>In 2006 I picked up my husband for a biopsy and  took him to an  outpatient  surgical center.  While I was there waiting  for the biopsy  to be  completed, I started noticing blood in my urine  and major  abdominal  cramps.  I left messages for several of my doctors  on what I  should do.   I finally decided to see my PCP after I got my  husband  home.</p>
<p>When Tom was done with his testing, his doctor  took one look at me   and asked if I wanted an ambulance.  I said no,  that I thought I could   make it to the emergency room ok &#8211; Tom couldn&#8217;t  drive because of the   anaesthetic they had given him.  I barely made it  to the ER and left  the  car with Tom to park.  Tom&#8217;s doctor followed us  to the ER and  became my  new doctor.</p>
<p>When I was diagnosed in the  ER with kidney cancer, Tom&#8217;s doctor said  that he could do the surgery  but that he would recommend someone even  more experienced,  Dr. Amir  Al-Juburi.</p>
<p>Dr. Amir Al-Juburi has been so kind to me, almost  like a kindly  grandfather might be, and he got rid of all 10 pounds of  my kidney and  cancer.</p>
<p>I owe him, the original doctor, and my Cushing&#8217;s doctors, my life.</p>
<p><img src="http://cushings.posterous.com/getfile/files.posterous.com/temp-2010-10-18/tiplyvorFBmgutminduDcFfhjpzclimzykjcCslsCrCEusnuCIijitxlzuyH/rcc-survivor.jpg.scaled800.jpg" alt="" width="200" height="155" /></p>
<p>&nbsp;</p>
<p>The following are extracted from <a href="http://cushings.invisionzone.com/index.php?showtopic=15909">posts that were made during my kidney cancer diagnosis and surgery</a> in 2006:</p>
<p>From Alice April 29, 2006</p>
<p>This is Mary&#8217;s friend, Alice (Dearest of <a href="http://www.power-surge.com/" target="_blank">Power Surge</a>).</p>
<p>I&#8217;m   not going to go into every detail at this time. I will fill you in on   more details as I receive them from Mary and Tom. I&#8217;m sure Mary posted   on the boards that she recently went back to Johns Hopkins in Baltimore   to be retested because the tests that had been done the past year were   incorrect and she was getting the wrong dose of hGh for the past year.   In any event, she was tested again on Thursday and then returned home.   The above is just a preface to create a time frame of events. It isn&#8217;t   the reason I&#8217;ve come here to ask for prayers for Mary.</p>
<p>This is:   Mary mentioned to me last week that she had noticed some blood in her   urine. She was going to get it checked. As it were, when she returned   from Johns Hopkins, she drove her husband, Tom, to get his regular   biopsy for his history of prostate cancer.</p>
<p>While in the emergency   room, Mary started having cramps in her stomach and when she went to   the rest room, discovered a great deal more blood in her urine.   Fortunately, she was at the hospital with her husband when this   occurred. The cramps were becoming more severe. The doctors checked her   out and they found a tumor in one of her kidneys &#8211; the tumor is  actually  the size of the kidney.</p>
<p>At this point and time, the  doctors are  recommending removal of the kidney and one of her adrenal  glands. One  surgeon recommended immediate removal of the kidney. Mary  and Tom wanted  to first talk with her other doctors and will decide on  what surgeon  performs the surgery. She never left the hospital where  she simply went  to take Tom for his test. Instead, she was admitted.  She had a great  deal of pain last night, but it was helped with pain  killers. I will  provide hospital details later.</p>
<p>She&#8217;s scheduled for an MRI later this morning or early afternoon.</p>
<p>I don&#8217;t want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.</p>
<p>I   know how much all of you love her (as I do), how much she&#8217;s done with   this site, how hard she&#8217;s worked to provide you with so much wonderful   information about Cushing&#8217;s &#8212; plus what a good friend she&#8217;s been to so   many of you. I also know that those of you who talk to her may want to   call her. She needs time to go through all the preliminaries before   being inundated with calls.</p>
<p>I will do my best to keep you   apprised of Mary&#8217;s situation as I receive information. When she gives me   the go ahead for giving out the hospital and is ready to take calls,   I&#8217;ll pass the information along.</p>
<p>Please take a moment to send   prayers for {{{{{MaryO}}}}} (she&#8217;s &#8220;our&#8221; MaryO on Power Surge, too) that   everything will turn out all right and she will get through this  crisis  with flying colors.</p>
<p>Dearest</p>
<p>~~~~~~~~~~~~~~~</p>
<p>From Alice April 30, 2006</p>
<p>* Addendum: 9:30 AM &#8211; made some corrections to the 5 something AM post.</p>
<p>What a beautiful show of love and support.</p>
<p>I   spoke to Mary last night. She had the MRI as scheduled. She spoke with   her own doctor and they decided on a surgeon, but it means going to   another hospital. She said she&#8217;d probably be coming home for a day   before going in for the surgery.</p>
<p>I hesitated to mention in my   first post that the doctors said they * think the kidney tumor is   malignant due to it&#8217;s size &#8211; 5 cm. I&#8217;m sure many of you surmised that,   or why would the emergency room doctors recommend immediate surgery.   However, as I said earlier, Mary and Tom wanted to consult with her own   doctor first. She was told that if, in fact, it is kidney cancer and is   detected and treated early and confined to the kidney, the chances for  a  full recovery are good.</p>
<p>Considering what she&#8217;s going through,   Mary sounded good. Lord knows, she&#8217;s been through so much already. God   willing, this may resolve some of the other health issues she&#8217;s been   experiencing.</p>
<p>Knowing Mary, when she returns home for a day   before checking into the other hospital for surgery, if she&#8217;s up to it,   she&#8217;ll post here herself and provide you with additional details.</p>
<p>For now, I&#8217;ve told you just about all I know.</p>
<p>Keep up those prayers!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice April 30, 2006<br />
11 AM Update:</p>
<p>Mary   had a brain scan this morning. She was supposed to have a bone scan   today as well, but they&#8217;re doing it tomorrow instead, so they told her   she could GO HOME TODAY (until she checks into the other hospital for   the surgery)! She&#8217;s thrilled to be going home and I&#8217;m sure she&#8217;ll be   here posting to all of you herself. You know Mary can&#8217;t stay away from   computers very long. I&#8217;d venture a guess that if they looked inside, her   arteries and veins would look more like computer cables (ducking).</p>
<p>We   love Mary &#8211; so keep on praying that everything goes well, that the   tests all yield good results and that she&#8217;ll be getting better &#8216;n better   until she&#8217;s finished with this whole ordeal</p>
<p>(please, God!)</p>
<p>Reminds me of the phrase . . .</p>
<p>Good, better, best<br />
Never let it rest<br />
Til the good is better<br />
And the better, BEST!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice  April 30, 2006</p>
<p>Update &#8211; 2:15 PM:</p>
<p>Spoke   with Mary. She&#8217;s home. She&#8217;s resting. The brain scan, chest/lung  x-ray,  abdominal scan all came out clean. The only test remaining that I  know  of is the bone scan, but it&#8217;s excellent that the above tests  yielded  good results.</p>
<p>She&#8217;s going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.</p>
<p>Her   attitude is very good. She sounds very good and I know, with God   watching over her, and everyone showing so much love and caring, she&#8217;ll   pull through this with flying colors.</p>
<p>It&#8217;s easier for me in   conveying information to you to do so with an upbeat attitude. I try to   avoid thinking of these things as tragedies or things that make me  sick.  Of course, I&#8217;m saddened and sorry that Mary is going through this  &#8212;  and has gone through so much, but such is life. You all certainly  know  that very well. Nobody hands us a guarantee that life is going to  be  without problems. And, yes, as the Morton&#8217;s salt container says, It   never rains, it pours. But my M.O. is to try to keep as positive as   possible, especially when in the throes of life&#8217;s unanticipated crises.</p>
<p>I believe the expression, &#8220;Attitude&#8221; is half the battle won.</p>
<p>Mary&#8217;s attitude is excellent and I know in my heart she&#8217;s going to come through this just fine.</p>
<p>Alice</p>
<p>P.S. An expression I remember my mother using, &#8220;The things we fear never happen. It&#8217;s the things we never think about that do!&#8221;</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice  May 2, 2006</p>
<p>There   wasn&#8217;t much to add yesterday. Mary was scheduled for a bone scan, but   first had to have the radioactive tracer substance injection (I presume   it was injected &#8212; she wasn&#8217;t sure herself). She was scheduled to have   that around 10:30-11 AM, ET, and then had to return five hours later  for  the bone scan.</p>
<p>I didn&#8217;t speak with her last night, but she  text  messaged me around 6:30 that she was finally home and that the  surgery  had been scheduled for a week from today, Tuesday, May 9th at  9:30 AM.</p>
<p>I&#8217;ll post the hospital information as the time draws near.</p>
<p>That&#8217;s about it for now. She&#8217;s still sounding pretty good and wants to get the surgery done already!</p>
<p>Let&#8217;s keep those prayers going!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From Me May 2, 2006</p>
<p>First   off, I&#8217;d like to thank you all for your good wishes, support and   prayers. I could do the Sally Field thing and say &#8220;&#8230;and I can&#8217;t deny   the fact that you like me, right now, you like me!&#8221; but I won&#8217;t   smile.gif</p>
<p>I plan to print everything out and take it with me to the hospital as a cheery-upper.</p>
<p>Alice   has been such a wonderful friend through all this, calling, checking  up  on me, keeping all of you updated on things as they are known right   now. Her support and love has been such a wonderful blessing in my  life,  especially now.</p>
<p>As it is, I&#8217;m currently feeling &#8220;normal&#8221; whatever that is. If I didn&#8217;t know I had a problem, I would think that I was just fine.</p>
<p>I   am fortunate that I found this out before the tumor could grow any   larger. I am fortunate that I was close to the ER, not driving home from   Baltimore, or in Baltimore, Oklahoma or on the cruise.</p>
<p>I know   that the tumor has been growing for quite a while &#8211; it&#8217;s very large. I   saw the MRI images and even I can tell that it&#8217;s not normal. As far as I   know now, all the other scans have been fine. I had an abdomen CT,   chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.</p>
<p>When   I was in the ER Friday, they assumed that it was a kidney stone and  did  the first abdomenal CT scan looking to see where that was. They  came  back with the news that yes, I had a kidney stone but that it was  the  least of my worries at them moment. So, I was admitted to the  hospital  and had all the other scans except the bone scan. Knowing what  I know  now, it would have been better and easier for me to have had  the bone  scan as an inpatient. As soon as I checked out and was out of  the  system, it was harder to get an &#8220;emergency&#8221; (not scheduled weeks in   advance) bone scan. Oh, well.</p>
<p>My surgery will be next Tuesday,  May 9, at 9:30AM at Fairfax Hospital (  <a href="http://www.inova.org/inovapublic.srt/ifh/index.jsp" target="_blank">http://www.inova.org/inovapublic.srt/ifh/index.jsp</a> ). I&#8217;m expected to  stay there for 3-5 days post op and they don&#8217;t  anticipate any pesky  complications like chemo or radiation at this  time.</p>
<p>For now, I&#8217;m  keeping my normal schedule, avoiding reading  horror stories online,  eating, sleeping &#8211; even napping! &#8211; as usual.  Sometimes I even forget  that I have this little medical appointment  next week.</p>
<p>For a non-phone person I&#8217;ve talked with so many people these last few days, it&#8217;s mind-boggling.</p>
<p>I&#8217;m   happy to report that all is not lost on the (Cushie) cruise. Someone  will  replace me &#8211; and there will be another cruise later in the year.  YEA! My  main &#8220;concern&#8221; on that now is that I&#8217;ll lose weight (finally!)  post-op  and my cruisewear will no longer fit. Yeah, right.</p>
<p>In  thinking  back, I think it&#8217;s a good thing that my arginine test was  messed up in  Sept of 05. If it hadn&#8217;t been, I wouldn&#8217;t have redone it  on Thursday. I  believe that having that stuff in my body was what made  my kidneys rebel  and act up on Friday. So, without the lab screw-up I  might not have  known anything for a long time.</p>
<p>So, it&#8217;s all good</p>
<p>Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like&#8230;</p>
<p>~~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice May 9, 2006, 09:10 AM</p>
<p>I&#8217;ve   been in constant contact with Mary. Spoke to her at 7 this morning.   She, Tom and their son, Michael, were on the way to the hospital. Mary   sounded very good as she has all week. She&#8217;s going in with an excellent   attitude.</p>
<p>She&#8217;s probably being prepped right now. The surgery is   set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 &#8211; 4   hours.</p>
<p>Now, all we can do is pray and wait. Tom will call me   after the surgery is over. As soon as I hear something, I&#8217;ll make it a   point to come back and post what I know.</p>
<p>Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it&#8217;s over.</p>
<p>God? You listening? You&#8217;ve got someone very special to watch over this morning. We&#8217;re counting on you!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice May 9, 2006, 12:33 PM</p>
<p>Mary&#8217;s husband, Tom, called me at 12:15</p>
<p>He   said it&#8217;s going to be another 3 hours &#8211; around 3:15 PM &#8211; before  they&#8217;re  done. Surgery didn&#8217;t start as scheduled at 9:30, but more like  11:30.  There wasn&#8217;t that much he could tell me except that the doctors  said, so  far everything is going as expected and Tom said, &#8220;so far, so  good.&#8221;</p>
<p>I  hesitate to draw any conclusions from that statement  because I&#8217;m not  100% sure of what the doctors expected, so it&#8217;s a  matter of waiting  until it&#8217;s over.</p>
<p>I&#8217;ll keep you posted. Keep praying, please!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~</p>
<p>From Alice May 9, 2006, 2:00PM</p>
<p>Tom called at 1:15, but we had a bad connection. We finally connected.</p>
<p>The   operation is over. Mary was being sewn up. Tom said according to the   doctor, &#8220;the tumor and the kidney were removed.&#8221; The doctor is calling   the operation a &#8220;complete success.&#8221;</p>
<p>I asked if they saw any signs   of cancer anywhere else because Mary had told me originally that they&#8217;d   said they might remove the gall bladder, too, but they didn&#8217;t remove   the gall bladder &#8211; which is a good sign.</p>
<p>It appears as though everything was concentrated in the kidney.</p>
<p>Thank God. It&#8217;s over!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice May 9 2006, 07:39 PM</p>
<p>Someone said: &#8220;&#8230; I   told her that I would wait until she was home and feeling much better   before I talked to her again and she agreed that she wasn&#8217;t sure she   would be up to taking phone calls. Again, thank you so much for keeping   us updated&#8230; this way we can know how Mary is doing without her having   to take so many calls&#8230;&#8221;</p>
<p>That&#8217;s exactly how Tom  and I  feel. Tom suggests people not call the hospital. I wouldn&#8217;t even  call  his cell phone all day. I waited for him to contact me. I know  he&#8217;s also  exhausted. I figured he&#8217;d call when he was up to it. He  called about 15  minutes ago.</p>
<p>It&#8217;s important that Mary get all the  rest she can  while recovering. Yes, everything turned out well, but  she still had  major surgery, is on morphine and needs her sleep. It&#8217;s  important that  we all allow her this time to rest.</p>
<p>It just so  happened she was  awake when he called and he turned on his cell phone&#8217;s  speakerphone so  Mary and I could talk for a minute. I was so happy to  hear her voice.  She sounded tired, her mouth was dry, but she sounded  good.</p>
<p>Because  this is a public message board, I prefer not to  post details of the  room she&#8217;s in. If anyone wants this information for  the purpose of  sending something to Mary, please E.mail me from the  address you  registered with on the board, and please include your user  name. Thanks.</p>
<p>Another  thing is that Mary has allergies, so for  those wishing to send  something to her, Tom and I (and Mary, as we  discussed before she went  into the hospital) agree she&#8217;s better off  without flowers.</p>
<p>Finally,  Tom said the doctor was very pleased  with how her surgery went &#8211; that  her body was quite robust, that there  was very little bleeding, so no  transfusion was needed, and he was  generally very pleased with the  surgery.</p>
<p>It&#8217;s been a very  stressful day. I love Mary like a  sister. We&#8217;ve been good friends for  11 years. I cried so after he  initially called and said everything went  well. I know all of you love  and care about Mary, too.</p>
<p>All I&#8217;ve thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.</p>
<p>That&#8217;s   about it for now &#8212; she even cracked a personal joke when we said   goodbye &#8212; she&#8217;ll be back to her old self again before too long.</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From Alice May 13 2006, 08:10 PM</p>
<p>Saturday Update on Mary:</p>
<p>When she&#8217;s back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.</p>
<p>She&#8217;s   doing well. The worst part is the incision which is quite large  because  the doctors originally anticipated the possibility of having to  remove  the adrenal gland above the kidney that was removed and the  gall bladder  as well. However, as I posted earlier, once they got in  there,  everything was found to be clean so they just took out the tumor  and the  kidney (as if that&#8217;s not enough). So, when she gets up to go  to the  bathroom, the incision is quite painful. I imagine an incision  of that  size will take a while to heal. Other than that she says she  feels  good!!</p>
<p>Additionally, the doctor was awaiting the results of  the  lymph node biopsy (just to be sure) and he told her yesterday,   &#8220;everything looks clean.&#8221;</p>
<p>She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!</p>
<p>Spoke to her after she arrived home (sorry I didn&#8217;t post earlier, but also have my Web site to deal with).<br />
She   sounded great and was glad to be home especially since a new person   checked into her room yesterday and Mary wasn&#8217;t able to sleep all night.</p>
<p>That&#8217;s all for now &#8211; and all very good news, thank God!</p>
<p>Alice</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~<br />
From Me: June 17, 2006 post-op:</p>
<p>Thank   you all for your prayers, good wishes, cards, phone calls, gifts,   general &#8220;cheery-uppers&#8221;. They all really helped me on my road to   recovery.</p>
<p>I do have a ton of thank you cards to send out to lots   of people &#8211; I&#8217;m very slow at that. Under normal circumstances my   handwriting is terrible. Now, post-op kidney cancer, I can no longer   take my arthritis meds or any NSAIDs and my writing will probably be   even worse sad.gif</p>
<p>I am very nearly better, not much pain   anymore, a nasty big scar and my energy levels aren&#8217;t so great. Of   course, they were awful before. I can no longer take the GH even though   I&#8217;m deficient. In 5 years (if I survive!) I can take the GH again,   supposedly.</p>
<p>I&#8217;ve had a lot of time to do a lot of thinking over   the last 6 weeks. I know I was extraordinarily lucky to have my tumor   discovered before it was too late. The lab reports and my surgeon   reported that it would only have been a week or so before the tumor had   hemorrhaged and caused major problems. Thank goodness the argenine   retest for GH had caused me to bleed &#8211; at least I think that&#8217;s what set   it off. If I hadn&#8217;t had all the blood and pain for one day only, I&#8217;d   have had no clue that I had this cancer and who knows what would have   happened in that next week.</p>
<p>I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.</p>
<p>During   my time of thinking, I have also been thinking about making changes to   the boards based on what I have heard was going on here. I am not yet   sure how these changes will manifest themselves but I do know that   bashing others will not be tolerated. More on this later, in another   area.</p>
<p>Again, thank you for all your support!</p>
<p>~~~~~~~~~~~~~~~~~~~</p>
<p>From Me July 6, 2006</p>
<p>Since   I recently had surgery for kidney cancer, I&#8217;ve been looking around for   another board to read and talk about this with other survivors   (hopefully!) I haven&#8217;t found anyplace I&#8217;d like to visit or feel   comfortable with yet, so I decided to make a new area here.</p>
<p>I   know &#8211; or I think I know &#8211; that no one else here has had kidney cancer,   although I know at least 1 other person has had a kidney removed and   several others have reported kidney stones and other possible kidney   diseases.</p>
<p>I&#8217;m sure that my recovery will be much the same as for any other major abdominal surgery, although I&#8217;d like it to be faster.</p>
<p>Before   my surgery, I didn&#8217;t have time really to consider that I had cancer,   and what it meant for my life. There was no going from doctor to doctor,   running a different test each week, suspecting that maybe&#8230; Just  boom,  there it is. Cancer.</p>
<p>Now that I&#8217;m about 8 weeks post-op,  I&#8217;m  thinking more and more about this and how it might affect my  future. I  know that there are going to be lots of scans, every 3  months, just to  be sure that there wasn&#8217;t a cell hiding out.</p>
<p>I  know I have to be  careful with meds &#8211; no NSAIDs so my arthritis is  worse. No GH &#8211; it&#8217;s  contraindicated for 5 years&#8230;assuming I&#8217;m cancer  free then.</p>
<p>I&#8217;m supposed to be eating less protein, more fruits/veggies, drinking more water.</p>
<p>And I&#8217;m supposed to avoid playing football and other things that might damage my remaining kidney.</p>
<p>Normally,   I know how very lucky I am. I just reread the path reports and know   that the tumor was already hemorrhaging around the borders and the cysts   contained hemorrhagic fluid. Things could be much worse.</p>
<p>Sometimes,   at night when I can&#8217;t sleep, I wonder why I was lucky like this. What   haven&#8217;t I done with my life that I should. Seems to me that I&#8217;ve   accomplished what I should already.</p>
<p>And, in the night, I worry about the cancer returning, taking my other kidney or worse.</p>
<p>At   this time, there&#8217;s no standard chemo unless it&#8217;s metastasized,  although  there are some promising clinical trials and radiation doesn&#8217;t  seem to  work for this kind of cancer, so if it returns it&#8217;s more  surgery.</p>
<p>I  suppose I could/should have put all this in my blog,  but I put it out  here in case anyone else should need this in the  future. I hope not!</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From me Aug 19 2006, 01:25 AM</p>
<p>Thanks so much for asking!</p>
<p>Unfortunately,   I haven&#8217;t read the boards much lately &#8211; I&#8217;m spending most of my online   time deleting/banning the InstaChat intruders.</p>
<p>I have been   working on the websites, though, and that&#8217;s always fun! I&#8217;ve even added a   new one to the roster and it has some cool stuff on it. New features  to  be announced in the upcoming newsletter.</p>
<p>I&#8217;ve been even more   tired than usual now that I&#8217;m off GH. I can&#8217;t take my arthritis meds, or   anything like Excedrin (no NSAIDs) so my joints are nearly always   bothering me and I have to wait out any headaches. I&#8217;m also just getting   over a UTI.</p>
<p>I just had my 3 month post-op CT scans and I hope   they come out ok. At first I was grateful that I wouldn&#8217;t have to have   chemo or radiation come to find out that neither has been discovered yet   which works well with kidney cancer. Apparently, it can resurface any   time for the rest of my life. I&#8217;m hoping that some of the chemo  clinical  trials show some good results so I can get this thing before  it  metastasizes somewhere.</p>
<p>I&#8217;m having trouble sleeping (1:20 AM   here, now) although I&#8217;m always tired. My mind plays all kinds of tricks   in the night. Those InstaChat people don&#8217;t help, either! When I wake up   just a little, instead of falling back asleep, I&#8217;ll go check to see  what  they&#8217;ve done.</p>
<p>Whine, whine!</p>
<p>On the plus side &#8211; I survived the kidney cancer surgery, and it&#8217;s almost vacation time!</p>
<p>Even vacation will be bittersweet, though. 2 years ago, <a href="http://suziq.memory-of.com/About.aspx">Sue</a> went with us on vacation. She had a great time and she had asked if she   could go with us again this year. Of course, we had said yes&#8230;</p>
<p>~~~~~~~~~~~~~~~~~~~~~~~</p>
<p>From me May 8 2008, 11:07 PM<br />
I   am feeling very maudlin, a bit down and depressed. It&#8217;s very nearly  the  anniversary of my kidney cancer surgery. I posted this in my blog a  few  days ago:</p>
<blockquote><p>I’ve been feeling weird for about a week  now. Last Friday, I  went through the whole “Sending Prayers” topic  (MKO&#8217;Note: this thread)  that my good friend Alice started for me.After  I read that, I  started reliving all the kidney cancer events…again. I  know I shouldn’t  do this. My counselor says that this is a very  stressful thing to do  and it’s not good for me, for anyone. But I do it  anyway, especially  the pituitary and cancer surgery anniversaries. I  wish I did this with  good stuff, could relive that instead of the scary  and painful.</p>
<p>After  I finished rereading all that, I went back to  my post in the cancer  section: I guess I’ve talked about this more than I  think! I just wish  there was someone I could get answers and support  from. I have never  met anyone in real life who has shared my particular  brand of cancer,  haven’t talked to anyone on the phone or emailed  anyone.</p>
<p>I even  asked at my local cancer support center  about support for me &#8211; they  have all kinds of meetings, mainly for  breast and prostate cancer, but  other kinds, too. But they said that  there weren’t enough kidney cancer  people to have a meeting. The one and  only book that the library there  has on kidney cancer was given to me  by the author to donate there.</p>
<p>Lucky  me &#8211; two rare diseases that  no one gets. According to statistics I  should be a black man who smokes  and works in the iron and steel  industry or is exposed to certain  chemical and substances, such as  asbestos (a mineral fiber that can be  used in construction materials  for insulation and as fire-retardant) and  cadmium (a rare, soft,  bluish-white chemical element used in batteries  and plastic industry),  also increase the risk for renal cell carcinoma. I  should have  polycystic kidneys and not drink the copious coffee.</p>
<p>So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?</p>
<p>And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.</p>
<p>Although   I’m not afraid of death and would like it to be as peaceful and   pain-free as possible, I still dream at night that I’m dying or have   died. These dreams have been going on since before the cancer and I   can’t seem to shake them although I’m taking them more in stride now and   can go right back to sleep.<br />
And from last year’s post on this topic, these still concern me:</p>
<p>What if the lung nodules that “aren’t growing” turn out to be   something on the next scan? Is the stomach distress I’m currently  feeling  a cause to ask for my next colonoscopy a bit earlier?</p>
<p>Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?</p>
<p>What if, what if…?</p>
<p>Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.</p>
<p>Had   they told me in 2006 that I only had a year or two to live, I’d have   thought it far too short a time. I guess how long a year is depends on   the frame of mind!</p>
<p>I hate going for scans because they could show   something but I get nervous when there are no scans because there could   be something else! Seems like my mind is setting me up for a lose-lose   situation.</p>
<p>I’m sure as I get closer to Friday that other  thoughts  will come to me. I am so grateful that I’ve had these two  “bonus  years”. I feel like there is so much still to do with the  Cushing’s  sites and I will never get them done in my lifetime but I  plan to keep  trucking along!</p></blockquote>
<p><a href="http://3.bp.blogspot.com/_Jt4VKh8rCv0/SIX3ooM5K1I/AAAAAAAAAyc/5eqaI3sHAEs/s1600-h/Kidney2.gif"><img src="http://3.bp.blogspot.com/_Jt4VKh8rCv0/SIX3ooM5K1I/AAAAAAAAAyc/5eqaI3sHAEs/s320/Kidney2.gif" border="0" alt="" /></a></p>
<p>And from <a href="http://cushingshelp.blogspot.com/2008/07/wonderful-words-of-life.html" target="_blank">Wonderful Words of Life&#8230;</a></p>
<p>I&#8217;m acquiring the title of an old hymn for this next post.</p>
<p>After  I was finished with the long Cushing&#8217;s diagnostic process,  surgery and several  post-op visits to NIH, I was asked to give the  scripture reading at my  church.  The man who did the sermon that week  was the survivor of a  horrific accident where he and his family were  hit by a van while  waiting at an airport.</p>
<p>i thought I had written down the verse  carefully.  I practiced and  practiced,  I don&#8217;t like speaking in front  of a crowd but I said I  would.  When I got to church, the verse was  different.  Maybe I wrote  it down wrong, maybe someone changed it.   Whatever.</p>
<p>This verse has come to have so much meaning in my  life.  When I saw  at a book called A Musician&#8217;s Book of Psalms each day  had a different  psalm.  On my birthday, there was &#8220;my&#8221; psalm so I had to  buy this book!</p>
<p><strong>Psalm 116 (New International Version)</strong></p>
<p>1 I love the LORD, for he heard my voice;<br />
he heard my cry for mercy.</p>
<p>2 Because he turned his ear to me,<br />
I will call on him as long as I live.</p>
<p>3 The cords of death entangled me,<br />
the anguish of the grave came upon me;<br />
I was overcome by trouble and sorrow.</p>
<p>4 Then I called on the name of the LORD:<br />
&#8220;O LORD, save me!&#8221;</p>
<p>5 The LORD is gracious and righteous;<br />
our God is full of compassion.</p>
<p>6 The LORD protects the simplehearted;<br />
when I was in great need, he saved me.</p>
<p>7 Be at rest once more, O my soul,<br />
for the LORD has been good to you.</p>
<p>8 For you, O LORD, have delivered my soul from death,<br />
my eyes from tears,<br />
my feet from stumbling,</p>
<p>9 that I may walk before the LORD<br />
in the land of the living.</p>
<p>10 I believed; therefore I said,<br />
&#8220;I am greatly afflicted.&#8221;</p>
<p>11 And in my dismay I said,<br />
&#8220;All men are liars.&#8221;</p>
<p>12 How can I repay the LORD<br />
for all his goodness to me?</p>
<p>13 I will lift up the cup of salvation<br />
and call on the name of the LORD.</p>
<p>14 I will fulfill my vows to the LORD<br />
in the presence of all his people.</p>
<p>15 Precious in the sight of the LORD<br />
is the death of his saints.</p>
<p>16 O LORD, truly I am your servant;<br />
I am your servant, the son of your maidservant;<br />
you have freed me from my chains.</p>
<p>17 I will sacrifice a thank offering to you<br />
and call on the name of the LORD.</p>
<p>18 I will fulfill my vows to the LORD<br />
in the presence of all his people,</p>
<p>19 in the courts of the house of the LORD—<br />
in your midst, O Jerusalem.<br />
Praise the LORD.</p>
<p>&nbsp;</p>
<p>I  carry a print out of this everywhere I go because I find it very   soothing. &#8220;when I was in great need, he saved me.&#8221;  This print out is in   a plastic page saver.  On the other side there is an article I found   after my kidney cancer.  I first read this in  <a href="http://www.amazon.com/exec/obidos/ASIN/1558744029/oconnormusicstud" target="_blank">Chicken Soup for the Surviving Soul</a> and is posted several places online.</p>
<p><strong>The Best Day Of My Life<br />
</strong>by Gregory M Lousignont</p>
<p>Today,  when I awoke, I suddenly realized that this is the best day  of my life,  ever! There were times when I wondered if I would make it  to today; but  I did! And because I did I&#8217;m going to celebrate!</p>
<p>Today, I&#8217;m  going to celebrate what an unbelievable life I have had  so far: the  accomplishments, the many blessings, and, yes, even the  hardships  because they have served to make me stronger.</p>
<p>I will go through  this day with my head held high, and a happy  heart. I will marvel at  God&#8217;s seemingly simple gifts: the morning dew,  the sun, the clouds, the  trees, the flowers, the birds. Today, none of  these miraculous creations  will escape my notice.</p>
<p>Today, I will share my excitement for  life with other people. I&#8217;ll  make someone smile. I&#8217;ll go out of my way  to perform an unexpected act  of kindness for someone I don&#8217;t even know.</p>
<p>Today,  I&#8217;ll give a sincere compliment to someone who seems down.  I&#8217;ll tell a  child how special he is, and I&#8217;ll tell someone I love just  how deeply I  care for her and how much she means to me.</p>
<p>Today is the day I  quit worrying about what I don&#8217;t have and start  being grateful for all  the wonderful things God has already given me.</p>
<p>I&#8217;ll remember  that to worry is just a waste of time because my faith  in God and his  Divine Plan ensures everything will be just fine.</p>
<p>And tonight,  before I go to bed, I&#8217;ll go outside and raise my eyes  to the heavens. I  will stand in awe at the beauty of the stars and the  moon, and I will  praise God for these magnificent treasures.</p>
<p>As the day ends and  I lay my head down on my pillow, I will thank  the Almighty for the best  day of my life. And I will sleep the sleep of  a contented child,  excited with expectation because know tomorrow is  going to be the best  day of my life, ever!</p>
<p>&nbsp;</p>
<p>When I&#8217;m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.</p>
<div><a onclick="return false;" href="http://cushings.posterous.com/#"><img id="mainImage" src="http://posterous.com/getfile/files.posterous.com/temp-2011-05-08/afiefzkADDADjukgipqAAaEBgewbHufpoevniplHdkdJibpeyCqqIektwpfB/bermuda-sunset.JPG.scaled800.jpg" alt="" width="640" height="358" /></a></div>
</div>
</div>
</div>
</div>
</div>
<div><a onclick="return false;" href="http://cushings.posterous.com/private/HmpkqfvDEc#"></a></div>
<p>Beautiful sunsets help, too!</p>
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		<title>Medical Apps, Part 4: RXmindme</title>
		<link>http://www.cushie.info/blog/2011/01/23/medical-apps-part-4-rxmindme/</link>
		<comments>http://www.cushie.info/blog/2011/01/23/medical-apps-part-4-rxmindme/#comments</comments>
		<pubDate>Sun, 23 Jan 2011 07:52:04 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[adrenal]]></category>
		<category><![CDATA[adrenal crisis]]></category>
		<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[General Health]]></category>
		<category><![CDATA[growth hormone]]></category>
		<category><![CDATA[Health Care]]></category>
		<category><![CDATA[pituitary]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[apps]]></category>
		<category><![CDATA[iPhone]]></category>
		<category><![CDATA[medical]]></category>
		<category><![CDATA[medications]]></category>
		<category><![CDATA[meds]]></category>
		<category><![CDATA[prescriptions]]></category>

		<guid isPermaLink="false">http://www.cushie.info/blog/?p=244</guid>
		<description><![CDATA[I often forget to take my meds.  And other days, I can&#8217;t remember if I took them or not. So, here&#8217;s another great (FREE!) iPhone App:  Rxmindme From their features list at http://www.rxmind.me/Features.aspx Making your life easy RxmindMe includes: Nine different types of reminders A Passcode Lock screen for your privacy Multiple types of alert [...]]]></description>
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<p>I often forget to take my meds.  And other days, I can&#8217;t remember if I took them or not.</p>
<p>So, here&#8217;s another great (FREE!) iPhone App:  Rxmindme</p>
<p>From their features list at <a href="http://www.rxmind.me/Features.aspx" target="_blank">http://www.rxmind.me/Features.aspx</a></p>
<div>
<h3>Making your life easy</h3>
<p>RxmindMe includes:</p>
<ul>
<li>Nine different types of reminders</li>
<li>A Passcode Lock screen for your privacy</li>
<li>Multiple types of alert sounds</li>
<li>Photos of your prescriptions</li>
<li>Email your prescription history</li>
<li>The FDA Drug Database for easy searching of medications</li>
<li>Historical records of all your reminders and prescriptions</li>
<li>Multitasking</li>
<li>Fast App Switching</li>
<li>iPhone 4 / iPod touch 4 &#8211; Retina Graphics</li>
<li>Snoozing Capabilities, 15 minutes, 30 minutes, 1 hour, or 2 hours</li>
<li>Ability to add multipule prescriptions / pills / vitamins / medications to a single reminder</li>
</ul>
</div>
<p>RxmindMe has a growing feature set. We keep adding new things to help   fellow pill  takers monitor their medications, track what they take,   and view their history of  their medications.</p>
<p>We believe  compliance is important for anyone taking medications,  that  is what   RxmindMe aims to do, help you stay healthy and safe. No  matter what you   call your medications &#8211; pills, prescriptions,  medications, or vitamins,   we have the App to track them all.</p>
<p>RxmindMe allows you to use any application and receive reminders. We    utilize iOS 4&#8242;s Local Notifications instead of the old Push    Notifications. With Local Notifications, you need no network connection.    Meaning you&#8217;ll receive your reminders anywhere at any time.</p>
<p>The home screen of RxmindMe gives you all your reminders for the day   in once place. It allows you to                  easily identify which   reminders you have missed, which reminders are coming up, and which   reminders you                 have already taken.</p>
<p>From this home screen, you will have the option to create snoozes,  add  as needed reminders, and                  add prescriptions you  take  randomly throughout the day &#8211; like Asprin.</p>
<p>RxmindMe allows you to create nine different types of reminders</p>
<div>
<ul>
<li>Daily reminders, ones that can occur on any day of the week</li>
<li>Weekly reminders, like daily reminders, but you can set weekly repeat intervals</li>
<li>Monthly reminders, monthly reminders that occur on a specific date during the month</li>
<li>Monthly reminders, monthly reminders that  occur on a specific day   of the week of a specific week of the month &#8211;  for example, the last   Friday of the month</li>
<li>Our new Every &#8220;X&#8221; Days reminder, repeats every few days</li>
<li>Hourly reminders for specific hourly intervals</li>
<li>As needed reminders which are taken infrequently</li>
<li>On specific dates, reminders that you want to occur on specific dates &#8211; for example the 28th of November</li>
</ul>
<p>Now with the ability for devices with cameras to take photos of your    prescriptions, you can see visually what you are supposed to take.</p>
<p>RxmindMe will keep and store your photos for your medicates, then it will display them along your reminders.RxmindMe now includes the up to date FDA database. You can search for    prescriptions in RxmindMe, select the one you want, and it will auto    populate the details for you. No more entering the units and name    yourself!</p>
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<p>No more forgotten meds for me!</p>
</div>
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		<title>Medical Apps, Part 3: Capzule PHR</title>
		<link>http://www.cushie.info/blog/2011/01/23/medical-apps-part-3-capzule-phr/</link>
		<comments>http://www.cushie.info/blog/2011/01/23/medical-apps-part-3-capzule-phr/#comments</comments>
		<pubDate>Sun, 23 Jan 2011 07:45:13 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[adrenal]]></category>
		<category><![CDATA[adrenal crisis]]></category>
		<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[General Health]]></category>
		<category><![CDATA[pituitary]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[apps]]></category>
		<category><![CDATA[iPhone]]></category>
		<category><![CDATA[medical]]></category>

		<guid isPermaLink="false">http://www.cushie.info/blog/?p=241</guid>
		<description><![CDATA[I just found a new iPhone app today which looks pretty good. You can add family members and send the info to another phone so everyone has the info they need. It&#8217;s only $.99 in the iTunes store: It&#8217;s called Capzule PHR and the website is http://capzule.com/phr/ with help files at http://capzule.com/phr/phrhowto.html There&#8217;s a free [...]]]></description>
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<p>I just found a new iPhone app today which looks pretty good. You can add   family members and send the info to another phone so everyone has the   info they need. It&#8217;s only $.99 in the iTunes store:</p>
<p>It&#8217;s called Capzule PHR and the website is <a href="http://capzule.com/phr/" target="_blank">http://capzule.com/phr/</a> with help files at <a href="http://capzule.com/phr/phrhowto.html" target="_blank">http://capzule.com/phr/phrhowto.html</a></p>
<p>There&#8217;s a free version to try called Capzule PHR Free</p>
<p>Features</p>
<p>* Push Notification to alert appointments<br />
* Data Visualization via Interactive Timeline<br />
* Edit records and upload files from Desktop/Laptop<br />
* Record conditions and allergies<br />
* Store doctor appointments<br />
* Enter medications<br />
* Email summary and graphs<br />
* Print or download summary from Desktop/Laptop<br />
* Maintain immunization records<br />
* Enter vitals in Metric or Standard units<br />
* Analyze line graphs of vitals and lab results<br />
* Keep family, social, and medical history together<br />
* Create custom health screening templates<br />
* Enter notes, upload results and files<br />
* Manage physician and insurance information<br />
* Reset password when password is lost<br />
* Categorize Notes and Attachments<br />
* Email flowsheet data in CSV format along with graphs<br />
* Email Summary with graphs embedded<br />
* Backup and Restore from Desktop/Laptop<br />
* Export CSV data from Desktop/Laptop<br />
* Email documents<br />
* Add files from other Apps (iOS 3.2+)<br />
* Summary Reporting Filter</p>
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		<title>40 Days of Thankfulness: Day Fifteen</title>
		<link>http://www.cushie.info/blog/2010/10/29/40-days-of-thankfulness-day-fifteen/</link>
		<comments>http://www.cushie.info/blog/2010/10/29/40-days-of-thankfulness-day-fifteen/#comments</comments>
		<pubDate>Sat, 30 Oct 2010 00:47:37 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[Thankfulness]]></category>
		<category><![CDATA[40 Days]]></category>
		<category><![CDATA[headache]]></category>
		<category><![CDATA[kidney cancer]]></category>
		<category><![CDATA[MaryO]]></category>
		<category><![CDATA[migraine]]></category>
		<category><![CDATA[pituitary]]></category>
		<category><![CDATA[surgery]]></category>
		<category><![CDATA[transsphenoidal]]></category>

		<guid isPermaLink="false">http://www.cushie.info/blog/?p=209</guid>
		<description><![CDATA[I hope I&#8217;m not jinxing myself but today I am thankful that I haven&#8217;t had any migraines for a long time. It&#8217;s not &#8220;just&#8221; not having migraines, but the fact that, should I get one, there&#8217;s nothing I can do about them anymore. I used to get migraines quite often, a hormone thing probably.  I [...]]]></description>
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<p>I hope I&#8217;m not jinxing myself but today I am thankful that I haven&#8217;t had any migraines for a long time.</p>
<p>It&#8217;s not &#8220;just&#8221; not having migraines, but the fact that, should I get one, there&#8217;s nothing I can do about them anymore.</p>
<p>I used to get migraines quite often, a hormone thing probably.  I  spent lots of hours in a completely dark room, blocking out sound,  trying to keep my head from pounding.</p>
<p>There was a long period of time that I had a migraine 6 days out of  the week for several weeks.  By accident, a friend asked me on a Monday  if I had one that day and that started me thinking &#8211; why do I have them  every day except Mondays?  I figured out that it wasn&#8217;t a migraine at  all but an allergy headache &#8211; I was allergic to the bath oil I was using  Monday-Saturday.  I gave that to my Mom and those headaches went away.</p>
<p>I still often get allergy headaches.  Since my Cushing&#8217;s  transsphenoidal pituitary surgery, I can&#8217;t smell things very well and I  often don&#8217;t know if there&#8217;s a scent that is going to trigger an allergic  reaction.  In church and elsewhere, my Mom will be my &#8220;Royal Sniffer&#8221;  and if someone is wearing perfume or something scented, she&#8217;ll let me  know and we&#8217;ll move to a new location.</p>
<p>There&#8217;s a double whammy here &#8211; since my kidney cancer surgery my  doctor won&#8217;t let me take NSAIDs, asperin, Tylenol, any of the meds that  might help a headache go away.  My only hope would be that coffee from <a href="http://cushings.posterous.com/tag/coffee" target="_blank">Day Fourteen</a>. And that&#8217;s definitely not usually enough to get rid of one of these monsters.</p>
<p>So, I am very thankful that, for the moment, I am headache/migraine free!</p>
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		<title>40 Days of Thankfulness: Day Nine</title>
		<link>http://www.cushie.info/blog/2010/10/18/191/</link>
		<comments>http://www.cushie.info/blog/2010/10/18/191/#comments</comments>
		<pubDate>Mon, 18 Oct 2010 23:56:25 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[Thankfulness]]></category>
		<category><![CDATA[40 Days]]></category>
		<category><![CDATA[kidney cancer]]></category>
		<category><![CDATA[MaryO]]></category>
		<category><![CDATA[renal cell carcinoma]]></category>

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		<description><![CDATA[I am so thankful for all my doctors but today I am thankful for Dr. Amir Al-Juburi who saved my life by removing my kidney cancer (renal cell carcinoma). In 2006 I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy [...]]]></description>
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<p>I am so thankful for all my doctors but today I am thankful for Dr.   Amir Al-Juburi who saved my life by removing my kidney cancer (renal   cell carcinoma).</p>
<p>In 2006 I picked up my husband for a biopsy and took him to an   outpatient  surgical center.  While I was there waiting for the biopsy   to be  completed, I started noticing blood in my urine and major   abdominal  cramps.  I left messages for several of my doctors on what I   should do.   I finally decided to see my PCP after I got my husband   home.</p>
<p>When Tom was done with his testing, his doctor took one look at me    and asked if I wanted an ambulance.  I said no, that I thought I could    make it to the emergency room ok &#8211; Tom couldn&#8217;t drive because of the    anaesthetic they had given him.  I barely made it to the ER and left the    car with Tom to park.  Tom&#8217;s doctor followed us to the ER and became   my  new doctor.</p>
<p>When I was diagnosed in the ER with kidney cancer, Tom&#8217;s doctor said   that he could do the surgery but that he would recommend someone even   more experienced,  Dr. Amir Al-Juburi.</p>
<p>Dr. Amir Al-Juburi has been so kind to me, almost like a kindly   grandfather might be, and he got rid of all 10 pounds of my kidney and   cancer.</p>
<p>I owe him, the original doctor, and my Cushing&#8217;s doctors (who will be featured later!), my life.</p>
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		<title>Environmental Issues and Cushing&#8217;s</title>
		<link>http://www.cushie.info/blog/2010/02/07/environmental-issues-and-cushings/</link>
		<comments>http://www.cushie.info/blog/2010/02/07/environmental-issues-and-cushings/#comments</comments>
		<pubDate>Sun, 07 Feb 2010 17:40:11 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[growth hormone]]></category>
		<category><![CDATA[pituitary]]></category>
		<category><![CDATA[tumor]]></category>

		<guid isPermaLink="false">http://www.cushie.info/blog/?p=147</guid>
		<description><![CDATA[My 2 brothers and 2 sisters are suffering the same as I am and so are all our children! Both my parents died in their 50's from untreated hypothyroid disease. Probably had adrenal/pituitary damage too when I think about their symptoms. ]]></description>
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<p>We’ve had quite a bit of discussion on this topic on <a href="http://cushings.invisionzone.com/index.php?showtopic=45084" target="_blank">the Cushing’s Help message boards</a> lately.  A few samples:</p>
<blockquote><p><strong><span style="color: #80ff00;">We live in a part of Ontario known as &#8220;the Chemical  Valley&#8221;. We are surrounded by Dow Chemical, Imperial Oil, Dupont, British  Petroleum, Shell Oil and about 12 other chemical plants.<br />
There has been many  people complaining about the high rate of cancer in our area and the government  was forced to do a health study in our area but as of yet they haven&#8217;t figured  out how to do the testing. My guess is they don&#8217;t want us to know how sick we  really are.<br />
We are part of the Goiter Belt which I think extends to PA.  There are very few people here who do not have thyroid problems.<br />
My 2  brothers and 2 sisters are suffering the same as I am and so are all our  children! Both my parents died in their 50&#8242;s from untreated hypothyroid disease.  Probably had adrenal/pituitary damage too when I think about their symptoms.<br />
I see hypothyroid people everywhere I look and have since started checking  for the hump and cushing signs.<br />
Holy endocrine system Batman, I think we are  all suffering at the hands of the Big Oil Companies. My husband works for  British Petroleum!!!!</span></strong></p></blockquote>
<p><strong><span style="color: #ff8040;">I hate to even think about it. Growing up in Buffalo &#8211;  erie county new york, which is nestled between lake ontario &amp; lake erie, I  don&#8217;t believe the water is safe to drink. There are several epa areas of concern  around lake ontario &amp; lake erie. AOC&#8217;s (areas of concern) are highly  polluted areas. Specificlly erie canal &amp; buffalo river are awful. I found  out some years ago that a playground that I frequented as a child was a landfill  for hazardous chemicals. Now I have a pituitary tumor, coincidence? Probably  not</span></strong></p>
<blockquote><p><strong><span style="color: #00ffff;">I live near Green Bay WI, which is part of Lake Michigan.  I believe our drinking water comes from the Bay. The water is polluted from the  papermills (PCPs). I also did play on a heavily fertilized and treated lawn from  a chemical company for at least 5 years when I was little. I had a thyroid  nodule removed, hypothyroidism, and I am still in the testing phase to see if I  have a pituitary tumor. My father also has hopothyroid, and seems to have kind  of a hump. He has had cancer as well.<br />
I remember the nuclear accident in the  80&#8242;s. It was really scary. I remember them saying something like it was worse  than what they reported.</span></strong></p></blockquote>
<p><strong><span style="color: #ff00ff;">This is one of my future quests, I live in a town on  10,000 people and there are many cases of brain and pituitary tumors, I hear it  all the time, I know of at least 3 definite pituitary cushing&#8217;s cases in my  small town. My future goal when I am feeling better is to put my story in the  paper, have people call me if they or someone they know has a funtioning  pituitary tumor, also brain tumors and brain cancer has some large numbers too.  The state sent me a letter I had to fill out when I first found out about my  tumor, it was manditory, if I did not fill it out they where going to have my  doctor fill it out so I did. So somewhere someone is keeping track of brain  tumors in my town. I want to find out the numbers, if it is as bad as I think it  is I am going to calll CDC to find out why. I also want to start a support  group. But I need to feel better first because this is going to be a big  undertaking.</span></strong></p>
<p>There are many more postings on this topic.</p>
<p>From <a href="http://www.indiancountrytoday.com/opinion/columnists/83635132.html" target="_blank">Wennersten: There’s something in the water</a></p>
<blockquote><p>Scientists now tell us there is something in our waters that we least  expected.</p>
<p>That “something” is a class of chemicals called endocrine disruptors, and Dr.  Vicki Blazer, a fisheries biologist at the United States Geological Survey,  thinks the chemicals are responsible for the high concentrations of intersex  fish found in the Potomac, and other rivers in the mid-Atlantic.</p>
<p>The chemicals also prove a threat to human health, but a bit of explanation,  first.</p>
<p>Our body’s endocrine system is a complex network of glands and hormones that  regulate growth, development, and the operation of various organs. The endocrine  glands (for example the thyroid, adrenal, pancreas, testes, ovaries and  pituitary glands) release hormones that act as chemical messengers and regulate  many life functions.</p>
<p>Endocrine disrupters are chemicals that interfere with this system, by either  acting like a hormone, or blocking a hormone’s function. They can be natural,  but many are man-made such as PCBs, dioxin, DDT and other pesticides,  pharmaceuticals and plasticizers. They are found in many products, including  plastic bottles, metal food cans, detergents, flame retardants, food, toys,  cosmetics and pesticides. They enter the environment and are now commonly found  in our streams, rivers, bays and oceans, where scientists are observing  problems.</p></blockquote>
<p>Then <a href="http://www.epa.gov/glnpo/aoc/" target="_blank">Great Lakes Area  of Concerns</a> shows a map of problem areas</p>
<blockquote><p>Forty-three AOCs have been identified: 26 located entirely within the United  States; 12 located wholly within Canada; and five that are shared by both  countries. Two Canadian AOCs have been delisted and one U.S. AOC has been  delisted leaving 30 AOCs remaining on the U.S. side of the border.</p>
<p>RAPs are being developed for each of these AOCs to address impairments to any  one of 14 beneficial uses (e.g., restrictions on fish and wildlife consumption,  dredging activities, or drinking water consumption) associated with these  areas.  USEPA has assigned<a href="http://www.epa.gov/glnpo/aoc/rapliaisons.html"> RAP Liaisons</a> for  AOCs.  <a href="http://www.epa.gov/glnpo/aoc/sedimentprojects.html">Sediments</a> have  been identified as serious problems in many AOCs. <a href="http://www.epa.gov/glnpo/aoc/delist.html">AOC Principles and  Guidelines</a> have been finalized for formally delisting these areas as  beneficial uses are restored.</p></blockquote>
<p>What do YOU think?  Are you in one of these areas?</p>
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		<title>Cushing&#8217;s, Cancer and Other Serious Diseases</title>
		<link>http://www.cushie.info/blog/2009/12/06/cushings-cancer-and-other-serious-diseases/</link>
		<comments>http://www.cushie.info/blog/2009/12/06/cushings-cancer-and-other-serious-diseases/#comments</comments>
		<pubDate>Sun, 06 Dec 2009 18:10:18 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[kidney cancer]]></category>
		<category><![CDATA[MaryO]]></category>
		<category><![CDATA[surgery]]></category>

		<guid isPermaLink="false">http://www.cushie.info/blog/?p=96</guid>
		<description><![CDATA[Cushing's and cancer, a kind of unusual combination.]]></description>
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<p>I was drawn to this blog post because the author mentioned that she had both Cushing&#8217;s and cancer, a kind  of unusual combination.</p>
<blockquote><p><a href="http://1974totoday.blogspot.com/2009/12/seal-it-up.html" target="_blank">1974 to Today: Seal it up</a><br />
By Experience<br />
I still  haven&#8217;t heard what the consensus is on my aftercare: <strong>Cushing&#8217;s</strong> and  Cancer. I don&#8217;t know what I will be expecting to feel like after surgery. My  endocrinologist said that I should get sick after the surgery and need some kind  of <strong>&#8230;</strong><br />
<a href="http://1974totoday.blogspot.com/" target="_blank">1974  to Today &#8211; http://1974totoday.blogspot.com/</a></p></blockquote>
<p>I don’t usually comment on blog posts but I did on this one because we seem  to share so much, disease-wise.</p>
<p>I said</p>
<blockquote><p>Hi, I was drawn to your blog post because I have a blog with the same name,  Cushings &amp; Cancer.</p>
<p>I had my Cushing&#8217;s long ago and my cancer (kidney aka renal cell carcinoma)  was 3 years ago but I sure know where you&#8217;re coming for.</p>
<p>My surgeon contacted my endo for the amounts of steroids during surgery (they  came through the IV) then post-op, they kept cutting my dose in half until I was  back down to normal.<br />
Generally, you stress-dose after surgery if you feel  like you have a flu coming on. Has your endo given you Cortef or another steroid  to take for emergencies like this? Sometimes, they will give you an injectible  to be faster acting.</p>
<p>Best of luck with the cancer surgery AND your  Cushing&#8217;s.<br />
MaryO</p></blockquote>
<p>I sure hope that this isn’t a trend, Cushies getting cancer although I know  of a couple others on the boards getting cancer.</p>
<p>I suppose Cushing&#8217;s doesn’t make us any more immune to other diseases but it  seems like it should.</p>
<p>Haven’t we already “done our time”?</p>
<p>OTOH, I have a friend with a serious cancer (aren’t they all?)  who recently  learned that she has a second, unrelated, cancer.  Makes you wonder sometimes.</p>
<p>What other diseases have you had in addition to your Cushing&#8217;s?</p>
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		<title>Münchausen By Media</title>
		<link>http://www.cushie.info/blog/2009/10/16/munchausen-by-media/</link>
		<comments>http://www.cushie.info/blog/2009/10/16/munchausen-by-media/#comments</comments>
		<pubDate>Fri, 16 Oct 2009 17:43:39 +0000</pubDate>
		<dc:creator>MaryO</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Cushings]]></category>
		<category><![CDATA[General Health]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[House]]></category>
		<category><![CDATA[kidney cancer]]></category>
		<category><![CDATA[message boards]]></category>
		<category><![CDATA[Münchausen Syndrome]]></category>
		<category><![CDATA[Mystery Diagnosis]]></category>
		<category><![CDATA[Power Surge]]></category>

		<guid isPermaLink="false">http://www.cushie.info/blog/?p=51</guid>
		<description><![CDATA[The Internet makes it so easy to develop weird and unusual diseases.  Just plop a symptom into Google and suddenly you find yourself with stomach cancer, Cushing&#8217;s or other dread diseases. Even on TV, the ads for lawyers almost convince people they might have mesothelioma and other rare illnesses that might bring you &#8211; and [...]]]></description>
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<p>The Internet makes it so easy to develop weird and unusual diseases.  Just  plop a symptom into Google and suddenly you find yourself with stomach cancer,  Cushing&#8217;s or other dread diseases.</p>
<p>Even on TV, the ads for lawyers almost convince people they might have  mesothelioma and other rare illnesses that might bring you &#8211; and them! &#8211; bundles  of money if you just sue someone.</p>
<p>Magazine ads implore you to &#8220;ask your doctor about&#8230;&#8221; this drug or that you  might or might not need.  Your doctor might just give it to you to keep you from  asking.  And there&#8217;s a needless medication that brings profit to the drug  company and side effects to you.</p>
<p>TV shows like <em>House</em> and <em>Mystery Diagnosis</em> will show you  diseases you never dreamed about.</p>
<p>There&#8217;s a great topic on the Power Surge message boards, <a href="http://www.power-surge.com/php/forums/index.php?showtopic=23015" target="_blank">What&#8217;s  the worst &#8220;disease or ailment&#8221; you&#8217;ve had</a>, where the women discuss the  diseases they thought that they had, based on symptoms, what they&#8217;ve seen  online, in the news but not based on reality.</p>
<p>I&#8217;ve done it myself.  About the only time I was right was with <a href="http://cushingshelp.blogspot.com/2009/10/participatory-medicine.html" target="_blank">my Cushing&#8217;s diagnosis.</a> That one was a good call. But my  thoughts of kidney cancer metastasis haven&#8217;t come true (yet, anyway!).</p>
<p>There&#8217;s been information online lately about Münchausen Syndrome.  <a href="http://en.wikipedia.org/wiki/M%C3%BCnchausen_syndrome" target="_blank">Wikipedia</a> says:</p>
<blockquote><p>&#8220;&#8230;the affected person exaggerates or creates <a href="http://en.wikipedia.org/wiki/Symptom" target="_blank">symptoms</a> of <a href="http://en.wikipedia.org/wiki/Illness" target="_blank">illnesses</a> in themselves or their  child/children in order to gain investigation, treatment, attention, sympathy,  and comfort from medical personnel. In some extremes, people suffering from  Münchausen&#8217;s Syndrome are highly knowledgeable about the practice of medicine,  and are able to produce symptoms that result in multiple unnecessary operations.  For example, they may inject a vein with infected material, causing widespread  infection of unknown origin, and as a result cause lengthy and costly medical  analysis and prolonged hospital stay. The role of &#8220;patient&#8221; is a familiar and  comforting one, and it fills a psychological need in people with Münchausen&#8217;s.  It is distinct from <a href="http://en.wikipedia.org/wiki/Hypochondriasis" target="_blank">hypochondriasis</a> in that  patients with Münchausen syndrome are aware that they are exaggerating, whereas  sufferers of hypochondriasis believe they actually have a  disease.&#8221;</p></blockquote>
<p>I think we&#8217;ve all see this, especially online.  It&#8217;s so easy to sit in the  comfort of ones home and add &#8220;just a little&#8221; to the symptoms, making it more  impressive for the readers.</p>
<p>From <a href="http://www.paris-kim.com/potholes/munch.htm" target="_blank">A  Strange Case of Münchausen By Internet</a>:</p>
<blockquote><p>&#8220;&#8230;When I first got online, I &#8220;met&#8221; a young woman who claimed to be a vet,  and offered me all kinds of advice about my cat and my tropical fish. She got  cancer, slowly declined, then died. We wanted to send flowers, and maybe attend  the funeral, and got her ISP to contact her family for us. To our shock, her  parents said there was no funeral. She wasn&#8217;t dead, she wasn&#8217;t even sick. At  least not physically. She&#8217;d pulled this kind of &#8220;pretend death&#8221; several times  before, and was in therapy, but every time life got stressful, she&#8217;d do it  again.</p>
<p>And the Internet is the ideal place for a Munchausen sufferer. With the click  of a button, you can find out all kinds of information, to help you pose as  anyone you want. People don&#8217;t expect to see you in person or even talk to you  except by e-mail, making deception easier. And often, mailing lists, message  boards, etc., will give unqualified support to their  members&#8230;&#8221;</p></blockquote>
<p>And <a href="http://media.www.dennews.com/media/storage/paper309/news/2009/10/16/News/Media.Makes.Me.Sick-3805241.shtml" target="_blank">Media Makes Me Sick</a>:</p>
<blockquote><p>&#8220;&#8230;The Internet is hands-down the worst thing to ever happen to the medical  world. With Web sites like WebMD, any paranoid hypochondriac like me can jump  online, look for symptoms and immediately convince himself he has cancer or  Cushing&#8217;s disease or non-Hodgkin&#8217;s lymphoma or any other of a million  things.</p>
<p>WebMD allows you to find one symptom and then &#8220;helps&#8221; you by  listing 15,000 things it could mean.</p>
<p>Oh my God. I do have a slight ache! That&#8217;s it. I must have a brain tumor. I&#8217;m  not kidding, I recently scared myself into thinking I had cancer. It took a  specialist, a CT scan and an ultra-sound to convince me  otherwise&#8230;&#8221;</p></blockquote>
<p>Karen found this older article at <a href="http://www.villagevoice.com/2001-06-26/news/cybersickness/1" target="_blank">http://www.villagevoice.com/2001-06-26/news/cybersickness/1</a></p>
<blockquote><p>&#8220;&#8230;Over nearly three years, from 1998 to 2000, a woman—let&#8217;s call her Anna—posted to an online support group for people with mental illness. To the larger circle of readers, she acted mostly as friendly counselor. But to a select few, she e-mailed stories of escalating catastrophes. Her husband and two children had perished in a plane crash, she wrote. As a kid, her father had molested her, and she had suffered multiple personality disorder. Finally, she told her trusted—and trusting—confidants that she had just been diagnosed with leukemia.</p>
<p><a title="Gwen Grabb" href="http://www.villagevoice.com/related/to/Gwen+Grabb">Gwen Grabb</a>, a psychotherapy intern and mother of three in Los Angeles, says the group believed <a title="Pretenders Anna" href="http://www.villagevoice.com/related/to/Pretenders+Anna">Anna</a> because she took on the role of helping others, revealing her own difficulties much later, and to an intimate audience. &#8220;She was very bright,&#8221; recalls Grabb. &#8220;She was very supportive and kind. One day, she started telling me about `the crash,&#8217; what they found in the black box, how you could hear her daughter screaming. I had known her a year. I believed her.&#8221;</p>
<p>But as the tales became more elaborate and grotesque, Grabb grew suspicious. Along with another group member—Pam Cohen, a bereavement counselor in the <a title="Mid-Atlantic States" href="http://www.villagevoice.com/related/to/Mid-Atlantic+States">Mid-Atlantic region</a>—she did some research and discovered Anna was making it up. It was a shock to all, but worse than that to Cohen. &#8220;It is like an emotional rape,&#8221; she says. People may have been upset over the online life and fatal cancer of the fictional Kaycee, whose creator admitted last month she&#8217;d invented the high school character for expressive purposes. But that was geared to a general audience, however easily suckered. Pretenders like Anna hurt a much more vulnerable group—folks who may be seriously ill and are seeking help&#8230;&#8221;</p></blockquote>
<p>So &#8211; use caution and remember that not everything you read will happen to  you!</p>
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