<?xml version='1.0' encoding='UTF-8'?><?xml-stylesheet href="http://www.blogger.com/styles/atom.css" type="text/css"?><feed xmlns='http://www.w3.org/2005/Atom' xmlns:openSearch='http://a9.com/-/spec/opensearchrss/1.0/' xmlns:georss='http://www.georss.org/georss' xmlns:gd='http://schemas.google.com/g/2005' xmlns:thr='http://purl.org/syndication/thread/1.0'><id>tag:blogger.com,1999:blog-2026605810085414094</id><updated>2012-01-26T19:36:36.479-05:00</updated><title type='text'>Scleroderma Blog</title><subtitle type='html'>Scleroderma is a chronic autoimmune disorder that can cause tightening and thickening of the skin, thickening of blood vessels, and damage to internal organs.</subtitle><link rel='http://schemas.google.com/g/2005#feed' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/posts/default'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default?max-results=100'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/'/><link rel='hub' href='http://pubsubhubbub.appspot.com/'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><generator version='7.00' uri='http://www.blogger.com'>Blogger</generator><openSearch:totalResults>53</openSearch:totalResults><openSearch:startIndex>1</openSearch:startIndex><openSearch:itemsPerPage>100</openSearch:itemsPerPage><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-4401027149712922475</id><published>2012-01-25T18:48:00.002-05:00</published><updated>2012-01-25T18:48:52.161-05:00</updated><title type='text'>2012 Scleroderma Winter Update</title><summary type='text'>Happy New Year to everyone! It has been about 6 months since my last update to you and I've just returned from a checkup at Johns Hopkins in Baltimore. It was an easy ride this morning down to Baltimore for a 10am visit. My first visit to John Hopkins was in Jan 2007 so it has been 5 years since I've been under Dr Wigley's magnificent care. I met with Dr Wigley and we reviewed some tests I had </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/4401027149712922475/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=4401027149712922475' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4401027149712922475'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4401027149712922475'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2012/01/2012-scleroderma-winter-update.html' title='2012 Scleroderma Winter Update'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-2880351536989020989</id><published>2011-07-20T20:22:00.001-05:00</published><updated>2011-07-20T20:23:45.106-05:00</updated><title type='text'>2011 Scleroderma Summer Update</title><summary type='text'>Is it warm enough for everyone? It can't be too warm for me, but I imagine a nice cool fall day or a cool ocean breeze would be preferred by most. It has been 6 months since my last update in January and things are still going very well. In the spring of 2006 I had my first symptoms which turned out to be scleroderma which means I've passed the 5 year mark of having the disease. Today was my </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/2880351536989020989/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=2880351536989020989' title='3 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2880351536989020989'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2880351536989020989'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2011/07/2011-scleroderma-summer-update.html' title='2011 Scleroderma Summer Update'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>3</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-4412423713143644627</id><published>2011-01-19T20:58:00.002-05:00</published><updated>2011-01-19T21:03:33.716-05:00</updated><title type='text'>2011 Scleroderma Winter Update</title><summary type='text'>Happy 2011 everyone! I'm sending out a rather uneventful update to the folks that have been following my updates on having Scleroderma. Today was my first checkup in 2011 and 6 months from my summer checkup in 2010. Because wife and kids have been dealing with vacation and snow days, it wasn't practical for one of them to take off, so just after 6am I set off to Baltimore and Johns Hopkins on my </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/4412423713143644627/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=4412423713143644627' title='7 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4412423713143644627'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4412423713143644627'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2011/01/2011-scleroderma-winter-update.html' title='2011 Scleroderma Winter Update'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>7</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-644737669980729424</id><published>2011-01-04T18:13:00.003-05:00</published><updated>2011-01-04T18:20:25.700-05:00</updated><title type='text'>Happy Holidays, Happy New Year &amp; Dr Wigley Video</title><summary type='text'>Happy Holidays &amp; Happy New Year everyone! I returned today from a two week vacation to my in-laws for Christmas and my parents for a nice Caribbean cruise with my family to celebrate my parents 50th wedding anniversary. That means back to work tomorrow :-(I happened to spot a video of Dr Wigley discussing Raynaud's on the Today Show from another scleroderma blogger at http://</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/644737669980729424/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=644737669980729424' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/644737669980729424'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/644737669980729424'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2011/01/happy-holidays-happy-new-year-dr-wigley.html' title='Happy Holidays, Happy New Year &amp; Dr Wigley Video'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1669784966581689991</id><published>2010-07-21T20:39:00.003-05:00</published><updated>2010-07-21T20:43:28.436-05:00</updated><title type='text'>Summer 2010 Scleroderma Update</title><summary type='text'>Is it hot enough for everyone? I know in the northeast it has been plenty hot, but it can't really be too hot for me since I got sick so I'm loving it. I do understand though how endless 90 degree days can get tiring for some. Today was my 6 month checkup down at the Johns Hopkins Scleroderma Center in Baltimore. It is my first checkup since going off Cellcept, the immune system suppression drug </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1669784966581689991/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1669784966581689991' title='6 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1669784966581689991'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1669784966581689991'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2010/07/summer-2010-scleroderma-update.html' title='Summer 2010 Scleroderma Update'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>6</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-2135727035260633999</id><published>2010-06-13T09:20:00.002-05:00</published><updated>2010-06-13T09:33:11.250-05:00</updated><title type='text'>Off Cellcept for 6 Months</title><summary type='text'>Today is 6 months since I last visited Johns Hopkins and stopped taking any Cellcept. So far, so good. I've had no symptoms return since stopping the medication and my health has remained exactly the same as it has been. Well I guess there is one exception - I had to get glasses for the first time. It's related to getting old though and not with scleroderma.When the weather has been warm/hot, I </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/2135727035260633999/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=2135727035260633999' title='4 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2135727035260633999'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2135727035260633999'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2010/06/off-cellcept-for-6-months.html' title='Off Cellcept for 6 Months'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>4</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-2701057181803524628</id><published>2010-01-13T18:40:00.002-05:00</published><updated>2010-01-13T18:59:06.860-05:00</updated><title type='text'>Winter 2010 Scleroderma Update</title><summary type='text'>It's still the first half of January so I think it is still ok to wish everyone a Happy New Year! It was 10 years ago that after kissing my wife and kids after the ball dropped that I drove over to work to monitor the applications for any Y2K issues. I think many of us would consider 2009 to be overall a pretty crummy year, so here's hoping 2010 is better for everyone. As far as my health goes, </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/2701057181803524628/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=2701057181803524628' title='8 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2701057181803524628'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2701057181803524628'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2010/01/winter-2010-scleroderma-update.html' title='Winter 2010 Scleroderma Update'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>8</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7989420379020820430</id><published>2009-10-13T05:59:00.002-05:00</published><updated>2009-10-13T06:07:27.935-05:00</updated><title type='text'>Always interest from doctors about scleroderma</title><summary type='text'>I have a stye in my eye which hasn't gone away so I went to a local doctor to get an antibiotic. Once she looked at my eye she started to write a prescription and the conversation turned to scleroderma. We spent much more time talking about scleroderma then about the stye in my eye. She was interested in the medications and how they helped, what changes occurred, etc. This is the same doctor's </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7989420379020820430/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7989420379020820430' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7989420379020820430'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7989420379020820430'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/10/always-interest-from-doctors-about.html' title='Always interest from doctors about scleroderma'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-696440727288464275</id><published>2009-07-16T05:32:00.006-05:00</published><updated>2009-07-16T05:44:17.719-05:00</updated><title type='text'>Summer 2009 Update - Scleroderma Center Visit</title><summary type='text'>It has been 6 months since my last update in the beginning of the year but it seems much longer then that to me. I set off early this morning to Baltimore and had no traffic at all so I was pretty early when I arrived at Johns Hopkins Scleroderma Center. I had some time to hang out in the car and read for about 40 mins.When I went in, it was pretty busy in the waiting room but they always take </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/696440727288464275/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=696440727288464275' title='13 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/696440727288464275'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/696440727288464275'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/07/summer-2009-update-scleroderma-center.html' title='Summer 2009 Update - Scleroderma Center Visit'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>13</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-5008482281269616344</id><published>2009-06-18T08:20:00.002-05:00</published><updated>2009-06-18T08:22:49.988-05:00</updated><title type='text'>A quick post</title><summary type='text'>Someone asked why I stopped writing. No reason other then, at least as far as Scleroderma is concerned, I don't have much to say. Everything seems fine and I head back to Johns Hopkins Scleroderma Center in Baltimore in 1 month for a checkup with Dr Wigley. I'll have something to report then.So other then constant rain where I live and summer not yet showing up in full force and the school year </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/5008482281269616344/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=5008482281269616344' title='6 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5008482281269616344'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5008482281269616344'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/06/quick-post.html' title='A quick post'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>6</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-8291113946132933867</id><published>2009-04-15T05:54:00.002-05:00</published><updated>2009-04-15T05:57:28.540-05:00</updated><title type='text'>Back at work!</title><summary type='text'>Well, this week I started back at work. Being out of work for 2 months had nothing to do with Scleroderma, just the economy and bad decisions by executive management. But that is behind me and I'm looking forward to the new opportunities in the new job.Still waiting to hear when I'll come off cellcept. I'll probably contact Dr Wigley in a month or so to bring the subject up or maybe I'll just </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/8291113946132933867/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=8291113946132933867' title='7 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8291113946132933867'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8291113946132933867'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/04/back-at-work.html' title='Back at work!'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>7</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1943822330010122464</id><published>2009-03-04T18:37:00.004-05:00</published><updated>2009-03-04T18:42:28.225-05:00</updated><title type='text'>CellCept Safety Information</title><summary type='text'>I received an email with the following that anyone that is on or considering going on CellCept should review. Nothing a doctor wouldn't explain to you anyway, but here it is for all to read.Roche Laboratories Inc., the makers of Cellcept (containing the active ingredient mycophenolate mofetil), has published a Medication Guide to provide important safety and efficacy information for patients. </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1943822330010122464/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1943822330010122464' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1943822330010122464'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1943822330010122464'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/03/cellcept-safety-information.html' title='CellCept Safety Information'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-5134972622500262061</id><published>2009-02-18T11:08:00.002-05:00</published><updated>2009-02-18T11:18:39.800-05:00</updated><title type='text'>Some minor updates</title><summary type='text'>Here are some minor updates since my January visit to Johns Hopkins.Had echo cardiogram and pulmonary function tests 2 weeks ago. I can't really tell if anything is good or bad with the echo cardiogram but I do get to watch my heart and valves on the screen. Since there's never been anything wrong in the past I doubt there's anything wrong now.The pulmonary function test (PFT) is a lot easier to </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/5134972622500262061/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=5134972622500262061' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5134972622500262061'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5134972622500262061'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/02/some-minor-updates.html' title='Some minor updates'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-6489138832863285765</id><published>2009-01-06T22:50:00.003-05:00</published><updated>2009-01-06T22:54:26.982-05:00</updated><title type='text'>2009 update - Johns Hopkins visit</title><summary type='text'>&lt;!--[if gte mso 9]&gt;     Normal   0               false   false   false      EN-US   X-NONE   X-NONE                                                     MicrosoftInternetExplorer4                                                   &lt;![endif]--&gt;&lt;!--[if gte mso 9]&gt;</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/6489138832863285765/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=6489138832863285765' title='8 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6489138832863285765'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6489138832863285765'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2009/01/2009-update-johns-hopkins-visit.html' title='2009 update - Johns Hopkins visit'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>8</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1295016930158236998</id><published>2008-12-24T20:49:00.003-05:00</published><updated>2008-12-24T20:51:17.313-05:00</updated><title type='text'>Happy Holidays and Happy New Year</title><summary type='text'>I'd like to wish everyone a happy and joyous holiday season.  I'd like to also wish you a healthy and prosperous 2009.  I know we can all use a lot of both next year.</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1295016930158236998/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1295016930158236998' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1295016930158236998'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1295016930158236998'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/12/happy-holidays-and-happy-new-year.html' title='Happy Holidays and Happy New Year'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-4179924720014257990</id><published>2008-12-05T07:02:00.004-05:00</published><updated>2008-12-05T07:14:48.574-05:00</updated><title type='text'>Gleevec in trials for scleroderma</title><summary type='text'>I've read a few articles about a newer drug with the brand name of Gleevec. Originally used to address cancer such as leukemia, it is now being tested with other diseases with scleroderma being one I (and others that follow this blog) care about.The latest article at http://www.oregonlive.com/business/index.ssf?/base/business/1228263912108410.xml&amp;coll=7 with the relevant portions copied here:"</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/4179924720014257990/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=4179924720014257990' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4179924720014257990'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4179924720014257990'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/12/gleevec-in-trials-for-scleroderma.html' title='Gleevec in trials for scleroderma'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1627682785367079890</id><published>2008-10-10T17:50:00.003-05:00</published><updated>2008-10-10T18:01:24.829-05:00</updated><title type='text'>The stats haven't changed...</title><summary type='text'>A friend of mine sent me an article on Scleroderma and Stem Cells. It is on the MSNBC at http://www.msnbc.msn.com/id/26841494/. Though the article is primarily about nuking the immune system and letting it regenerate itself, it has the same old stats in it.So I replied back to my friend with 300k with the disease. 1/3rd with systemic (like me). 50% die in 5 years. Any other good news you want to </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1627682785367079890/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1627682785367079890' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1627682785367079890'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1627682785367079890'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/10/stats-havent-changed.html' title='The stats haven&apos;t changed...'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-751612133914323481</id><published>2008-09-22T21:28:00.003-05:00</published><updated>2008-09-22T21:41:40.842-05:00</updated><title type='text'>Change of seasons</title><summary type='text'>Summer has come and gone. I was able to play golf 3 times in August while I was on vacation. The 1st time was with my older daughter. I played as if I hadn't stopped playing. We only played 9 holes and I shot a 42. Could have been a 40 if I made 2 putts I should have made. The 2nd round I ended up going out with the club champion. We played from the back tees. He was a pleasure to watch hit, but </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/751612133914323481/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=751612133914323481' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/751612133914323481'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/751612133914323481'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/09/change-of-seasons.html' title='Change of seasons'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-3242982040893798628</id><published>2008-08-03T15:58:00.002-05:00</published><updated>2008-08-03T16:03:22.270-05:00</updated><title type='text'>Contacting me...</title><summary type='text'>My last post has seen a bunch of comments made and in some cases, I'd like to contact those that have posted, but typically there's no way to do that for folks that comment. I still want to remain rather anonymous on the blog for a few reasons, but if you'd like to contact me, you can email at sclerodermablog@gmail.com and I'll personally respond.</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/3242982040893798628/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=3242982040893798628' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3242982040893798628'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3242982040893798628'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/08/contacting-me.html' title='Contacting me...'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-4876944054892697335</id><published>2008-06-18T19:47:00.003-05:00</published><updated>2008-06-18T19:54:20.213-05:00</updated><title type='text'>June 2008 Update</title><summary type='text'>It’s been just over 3 months since my last visit to Baltimore and my last update email. This morning, with one of my daughters as my co-pilot (she skipped a ½ day of school), we set off for Baltimore and my next checkup. For an executive summary, the worst thing all day was paying $80 for gas for the round trip to Baltimore. Otherwise, things are going very well.Normally my appointments are early</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/4876944054892697335/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=4876944054892697335' title='6 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4876944054892697335'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4876944054892697335'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/06/june-2008-update.html' title='June 2008 Update'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>6</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-3495285060344211562</id><published>2008-03-04T20:06:00.002-05:00</published><updated>2008-03-04T20:09:11.308-05:00</updated><title type='text'>Winter 2008 checkup</title><summary type='text'>Hey everyone! It's been 3 months since my last update and we're back from our latest visit with Dr Wigley at the Johns Hopkins Scleroderma Center in Baltimore. The visit went very well.A year ago (Dec 2006), between Christmas and New Years, I tried to go skiing with my family and friends but it just wasn't possible. It was painful to just have the boots on let alone ski. Well exactly one year </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/3495285060344211562/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=3495285060344211562' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3495285060344211562'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3495285060344211562'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/03/winter-2008-checkup.html' title='Winter 2008 checkup'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-3339437371725281737</id><published>2008-01-04T07:11:00.000-05:00</published><updated>2008-01-04T07:17:02.420-05:00</updated><title type='text'>One year from my first Scleroderma Center visit</title><summary type='text'>Today is exactly one year from my first multi-hour visit with Dr Wigley at the Scleroderma Center at Johns Hopkins in Baltimore. What a long year it has been. The week before my first visit, as I do with my family every year, we went on our annual ski trip. I could barely get my ski boots on and after 1 run down the mountain, I had to admit defeat and give in to the pain. Though my family enjoyed</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/3339437371725281737/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=3339437371725281737' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3339437371725281737'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3339437371725281737'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2008/01/one-year-from-my-first-scleroderma.html' title='One year from my first Scleroderma Center visit'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-8464388793491778886</id><published>2007-12-06T21:08:00.000-05:00</published><updated>2007-12-06T21:12:39.811-05:00</updated><title type='text'>My latest Scleroderma Center visit</title><summary type='text'>Our latest visit to the Scleroderma Center at Johns Hopkins in Baltimore was today (Dec 5th, 2007). We set out before the sun was up and arrived in Baltimore early. They checked me in, took all my vitals and in in a couple of minutes Dr Wigley came in. For those that saw my last post, you know that Dr Wigley was on the Today Show a month ago with Bob Saget discussing scleroderma. When he came in,</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/8464388793491778886/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=8464388793491778886' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8464388793491778886'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8464388793491778886'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/12/my-latest-scleroderma-center-visit.html' title='My latest Scleroderma Center visit'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-757593767771610558</id><published>2007-11-07T21:56:00.000-05:00</published><updated>2007-11-09T06:52:15.828-05:00</updated><title type='text'>Dr Wigley &amp; Bob Saget on NBC's Today Show</title><summary type='text'>I'm sending out an email in between checkups because Dr Wigley who I go to at Johns Hopkins was on the Today Show on Tuesday 11/6 with the comedian Bob Saget who is an advocate for scleroderma. Bob's sister had the disease.  The video clip of the segment is on the Today Show web site at the Today Show Video. The video is about 6.5 minutes long.  Hopefully the video stays up at least long enough </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/757593767771610558/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=757593767771610558' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/757593767771610558'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/757593767771610558'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/11/dr-wigley-bob-saget-on-nbcs-today-show.html' title='Dr Wigley &amp; Bob Saget on NBC&apos;s Today Show'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-4888828858133093915</id><published>2007-10-24T18:48:00.000-05:00</published><updated>2007-10-24T18:53:47.809-05:00</updated><title type='text'>A bit of a set back</title><summary type='text'>Starting last Weds (10/17), I felt some fibrosis in my left arm. On Sunday, my hips started hurting. The fibrosis in my left arm is much better, but my hips are still "rubbing" a lot. When I walk, if I put my hands on my hips, I can feel the rubbing. I can feel it without doing that but I could show my wife what was going on.I emailed Dr Wigley at the Scleroderma Center at Johns Hopkins and he </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/4888828858133093915/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=4888828858133093915' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4888828858133093915'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4888828858133093915'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/10/bit-of-set-back.html' title='A bit of a set back'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-5224083802430846444</id><published>2007-09-20T22:15:00.000-05:00</published><updated>2007-09-20T22:20:31.913-05:00</updated><title type='text'>End of summer scleroderma checkup</title><summary type='text'>Wednesday my wife and I woke up early and set off for another visit to Johns Hopkins Scleroderma Center to see Dr Wigley.  On the way down, we heard on the radio that it was International Talk Like A Pirate Day - http://news.yahoo.com/s/nm/20070918/od_nm/pirates1_dc . Maybe everyone should put this important day on their calendars for next year.Every time we go in the exam room, Dr Wigley has a </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/5224083802430846444/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=5224083802430846444' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5224083802430846444'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5224083802430846444'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/09/end-of-summer-scleroderma-checkup.html' title='End of summer scleroderma checkup'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-3961471152272867797</id><published>2007-08-02T05:37:00.000-05:00</published><updated>2007-08-02T05:39:29.061-05:00</updated><title type='text'>Mid-Summer checkup at the Scleroderma Center</title><summary type='text'>Yesterday was my mid-summer checkup at the Scleroderma Center in Baltimore. My wife  and I woke up early (4:30am) and drove down for the 9:50am appointment.  The checkup went very well. Dr Wigley is pleased with how things are progressing. No additional damage from the disease seems to have occurred and things appear stable since my last appointment and even very minor improvement in some areas. </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/3961471152272867797/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=3961471152272867797' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3961471152272867797'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3961471152272867797'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/08/mid-summer-checkup-at-scleroderma.html' title='Mid-Summer checkup at the Scleroderma Center'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-8392617296725198252</id><published>2007-07-27T20:38:00.000-05:00</published><updated>2007-07-27T20:43:40.461-05:00</updated><title type='text'>Almost time for another visit</title><summary type='text'>Almost time for another visit to see Dr Wigley at the Scleroderma Center in Baltimore. Time for a 2 month check up. I actually look forward to these visits. Maybe it's the hope that when I get there, he tells me he found the magical cure.I just read a short article that is probably one of the best written articles on Scleroderma that I've read. It's from a local news station and it's available on</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/8392617296725198252/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=8392617296725198252' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8392617296725198252'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8392617296725198252'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/07/almost-time-for-another-visit.html' title='Almost time for another visit'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-4069920467928967890</id><published>2007-06-06T20:57:00.001-05:00</published><updated>2007-06-06T21:01:48.870-05:00</updated><title type='text'>June visit to the Johns Hopkins Scleroderma Center</title><summary type='text'>Today was another checkup visit for me at Johns Hopkins It's been about 8 weeks since my last visit. My wife had training at work so she wasn't able to go with me. I woke up around 4:30, showered and drove down for a morning appointment. There's so much less traffic at 5am in the morning. I guess that's because the sane people are still asleep.Everything at this checkup was very routine. They </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/4069920467928967890/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=4069920467928967890' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4069920467928967890'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/4069920467928967890'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/06/june-visit-to-johns-hopkins-scleroderma.html' title='June visit to the Johns Hopkins Scleroderma Center'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-8433691482459440787</id><published>2007-05-14T05:49:00.000-05:00</published><updated>2007-05-14T05:55:50.922-05:00</updated><title type='text'>Pretty good the past few days</title><summary type='text'>Last Thursday my legs felt horrible. It was like I was lifting 1000 lbs every time I took a step. Then on Friday, the exact opposite. My legs felt great. What happened between Thurs &amp; Fri?Sat and Sun felt good too. Last night around 10pm when we hopped into bed to watch some TV, I noticed that neither of my forearms had the "creaky door" fibrosis that I've had for months now. I wake up in the </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/8433691482459440787/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=8433691482459440787' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8433691482459440787'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8433691482459440787'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/05/pretty-good-past-few-days.html' title='Pretty good the past few days'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-8029156930004786049</id><published>2007-04-21T17:19:00.000-05:00</published><updated>2007-04-21T17:21:29.640-05:00</updated><title type='text'>Spring has sprung!</title><summary type='text'>It is nice to experience the first day of spring (no matter what the calendar says). It's been cool/cold/rainy/windy for way too long. I don't know it felt like it was in the 60's. At least that would have been a sign of spring. Today it hit the mid 70's and is gorgeous out. It is nice to not have to wear gloves and a coat.Here's to more of this great weather!</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/8029156930004786049/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=8029156930004786049' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8029156930004786049'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8029156930004786049'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/04/spring-has-sprung.html' title='Spring has sprung!'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-8756043043860209114</id><published>2007-04-16T19:46:00.000-05:00</published><updated>2007-04-16T19:59:14.667-05:00</updated><title type='text'>Prescription plans - PITA but we need them</title><summary type='text'>In previous posts, I mentioned how expensive at least 1 of the medications I'm on costs.  Good think I have a prescription plan. What is inconvenient is that my prescription plan requires us to mail in to fulfill prescriptions that go past 3 initial months. That means a new prescription for each medication needs to be obtained. But what used to be a simple call to the drug store now requires </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/8756043043860209114/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=8756043043860209114' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8756043043860209114'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/8756043043860209114'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/04/prescription-plans-pita-but-we-need.html' title='Prescription plans - PITA but we need them'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1056752255974519711</id><published>2007-04-10T08:21:00.000-05:00</published><updated>2007-04-10T08:26:11.825-05:00</updated><title type='text'>My first cold (sniffles)</title><summary type='text'>Start the end of last week and into the weekend I got a good head cold. Stuffy nose, post nasal drip, etc.Called down to Johns Hopkins to see what I could take since this is the first time with any problem since I started the heavier duty meds in January. Dr Wigley replied back that I could take an over the counter medication but be aware that meds like Sudafed will aggravate the Reynaud's.My </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1056752255974519711/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1056752255974519711' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1056752255974519711'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1056752255974519711'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/04/my-first-cold-sniffles.html' title='My first cold (sniffles)'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-798727143225932898</id><published>2007-04-05T09:45:00.000-05:00</published><updated>2007-04-05T09:48:18.925-05:00</updated><title type='text'>Visit #3 to Johns Hopkins</title><summary type='text'>Yesterday I had my 3rd appt with Dr Wigley at the Scleroderma Center at Johns Hopkins in Maryland.My wife and I drove down late in the morning, ate some crab cakes for a late lunch and went over to the center for a late afternoon appt. We drove back home after the appointment.When the Dr walked in, I said 'Give me some good news - you found a cure.' He then discussed some cases with people he is </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/798727143225932898/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=798727143225932898' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/798727143225932898'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/798727143225932898'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/04/visit-3-to-johns-hopkins.html' title='Visit #3 to Johns Hopkins'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1728118182790811472</id><published>2007-04-01T15:49:00.000-05:00</published><updated>2007-04-01T16:00:15.654-05:00</updated><title type='text'>This week - visit #3 to Johns Hopkins</title><summary type='text'>This Weds I head back down to Baltimore with my wife for my 3rd visit to Dr Wigley at the Johns Hopkins Scleroderma Center. At this very moment, if I had to state how I feel, it's "better".  Hopefully it will continue.My in-laws are coming up on Tues for Easter which is great since we don't need to worry about the kids getting home from school while we're down in Baltimore.My poor wife has been </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1728118182790811472/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1728118182790811472' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1728118182790811472'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1728118182790811472'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/04/this-week-visit-3-to-johns-hopkins.html' title='This week - visit #3 to Johns Hopkins'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-5194945474604865423</id><published>2007-03-28T16:35:00.000-05:00</published><updated>2007-03-28T16:41:31.670-05:00</updated><title type='text'>Follow-up PFT today - no change</title><summary type='text'>Had a follow-up PFT today at the local hospital. My previous Pulmonary Function Test was last November. It's the only test you actually have to do anything for. The rest you just lie there, get poked or drink various substances. This one is more like a game.I must have been the 1st test today since the tech had to calibrate the unit using what looked like a giant bicycle pump. I told her we could</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/5194945474604865423/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=5194945474604865423' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5194945474604865423'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5194945474604865423'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/03/follow-up-pft-today-no-change.html' title='Follow-up PFT today - no change'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-6215885590439455337</id><published>2007-03-23T21:02:00.000-05:00</published><updated>2007-03-23T21:06:59.650-05:00</updated><title type='text'>Now I'm asking myself - any change yet?</title><summary type='text'>For a week, it felt like my hands were becoming less sore. Yesterday and most of today though, they felt "less good" though tonight they feel less sore again. I've been on the cell cept for about 10 or 11 weeks now and I was hoping it would kick in by now. I haven't even told my wife my hands were feeling better because I don't want to get her hopes up. These past 2 days were a disappointment but</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/6215885590439455337/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=6215885590439455337' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6215885590439455337'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6215885590439455337'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/03/now-im-asking-myself-any-change-yet.html' title='Now I&apos;m asking myself - any change yet?'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-1363720643226657237</id><published>2007-03-13T19:25:00.000-05:00</published><updated>2007-03-13T19:34:33.666-05:00</updated><title type='text'>Any change yet?</title><summary type='text'>I get asked "Any change yet?" at least once a day by someone.  The good news is that in the past month or so, there's been no change for the worse. It is very hard to get excited about anything I might consider an improvement as I don't know if it will last. This scleroderma is a tricky disease to understand.</summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/1363720643226657237/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=1363720643226657237' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1363720643226657237'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/1363720643226657237'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/03/any-change-yet.html' title='Any change yet?'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-3036615726513240370</id><published>2007-03-05T08:51:00.000-05:00</published><updated>2007-03-05T09:01:21.410-05:00</updated><title type='text'>Wow, are my Scleroderma meds expensive!</title><summary type='text'>My prescription plan changed the beginning of the year and I can no longer just go to my local pharmacy to have my prescriptions filled. After the initial and follow-up refill for a prescription, I now need to mail in for refills for a 3 month supply. It is a real PITA that has pros (saves the company money) and cons (hurts the local pharmacy), but I won't talk about that now.When I went to the </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/3036615726513240370/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=3036615726513240370' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3036615726513240370'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/3036615726513240370'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/03/wow-are-my-scleroderma-meds-expensive.html' title='Wow, are my Scleroderma meds expensive!'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7154452322066489859</id><published>2007-03-01T09:06:00.000-05:00</published><updated>2007-03-01T09:18:04.344-05:00</updated><title type='text'>Does one pain override another pain?</title><summary type='text'>My shins have been really bothering me lately making the walk to/from work the most uncomfortable part of my day. From what my doctor has told me, the pain is caused by fibrosis of the tendon associated with the scleroderma.I was wondering as I was walking in, if the pain in my shins stopped, would anything else hurt? Is the pain I'm feeling overriding the pain I had before and that pain will </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7154452322066489859/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7154452322066489859' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7154452322066489859'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7154452322066489859'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/03/does-one-pain-override-another-pain.html' title='Does one pain override another pain?'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-5918005053621508704</id><published>2007-02-26T09:30:00.000-05:00</published><updated>2007-02-26T09:38:33.601-05:00</updated><title type='text'>A member of the Fantastic Four?</title><summary type='text'>I was discussing scleroderma with someone over the weekend and they described what it must be like as being The Thing from the Fantastic Four. I think she was a bit accurate.I then saw this newspaper article titled Disease is `like turning to stone' about a young lady with scleroderma and thought I'd post it here.A so-so weekend for me. Didn't feel too bad, didn't feel great. I really wish the </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/5918005053621508704/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=5918005053621508704' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5918005053621508704'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/5918005053621508704'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/member-of-fantastic-four.html' title='A member of the Fantastic Four?'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7001649201739460123</id><published>2007-02-22T19:45:00.000-05:00</published><updated>2007-02-22T19:49:53.207-05:00</updated><title type='text'>My first checkup at Johns Hopkins</title><summary type='text'>My first follow-up visit was this morning, 7 weeks from my initial visit to Johns Hopkins. My wife and the girls were on vacation and met me at the hotel to come along. If the darn valet guy didn't take 25 mins to bring the cars this morning we wouldn't have needed to rush. I need to find a better hotel! Below are the highlights of the visit.After the quick weight/blood pressure/temperature, Dr </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7001649201739460123/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7001649201739460123' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7001649201739460123'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7001649201739460123'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/my-first-checkup-at-johns-hopkins.html' title='My first checkup at Johns Hopkins'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7874261110075489357</id><published>2007-02-21T08:40:00.000-05:00</published><updated>2007-02-21T08:48:52.245-05:00</updated><title type='text'>Johns Hopkins Scleroderma Center Take 2</title><summary type='text'>Later today I'll head back down to Johns Hopkins Scleroderma Center for my first follow-up visit tomorrow since my initial visit the beginning of January. It will be 7 weeks tomorrow since my visit and 6.5 weeks since I've been on the medication.This past Monday (Presidents Day) was the best I felt overall in a long time. Yesterday and today are more "normal" with some pain back in my shins and </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7874261110075489357/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7874261110075489357' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7874261110075489357'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7874261110075489357'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/johns-hopkins-scleroderma-center-take-2.html' title='Johns Hopkins Scleroderma Center Take 2'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-6802069738035475952</id><published>2007-02-13T22:35:00.000-05:00</published><updated>2007-02-13T22:49:01.732-05:00</updated><title type='text'>My aching shins!</title><summary type='text'>Starting about 5 days ago, out of nowhere, my shins started to hurt. Whether it's actually shin splints or not, I don't know, but when I walk, my shins are killing me. I looked up shin splints online and I'm guessing if it has anything to do with scleroderma, it has to do with the connective tissue, one of the causes of shin splints. It's not like I've been jogging lately so I'd lean towards </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/6802069738035475952/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=6802069738035475952' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6802069738035475952'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6802069738035475952'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/my-aching-shins.html' title='My aching shins!'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-2870374931655577182</id><published>2007-02-11T08:21:00.000-05:00</published><updated>2007-02-11T08:45:26.907-05:00</updated><title type='text'>Scleroderma vs Terrorism</title><summary type='text'>I received an email overnight from a co-worker at my previous job that found out I have scleroderma. I've received many over the past couple months as word spreads, but what was different was this person is in Iraq, fighting the war on terrorism. She wished me good luck and she hopes things turn out well.I thanked her, told her how ironic it was that someone in Iraq is wishing me good luck with </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/2870374931655577182/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=2870374931655577182' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2870374931655577182'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2870374931655577182'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/scleroderma-vs-terrorism.html' title='Scleroderma vs Terrorism'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7144102503290760656</id><published>2007-02-08T20:31:00.000-05:00</published><updated>2007-02-05T21:06:11.414-05:00</updated><title type='text'>How I stay current with Scleroderma</title><summary type='text'>I never heard of scleroderma until I was diagnosed with it. Now that I have it, I'm interested in any news related to scleroderma. So here's the methods I use. If anyone has other methods, please post them.Yahoo Groups is a community platform where members of individual groups can post/email messages and every other member of the group can view them as individual emails, daily digest emails, or </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7144102503290760656/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7144102503290760656' title='1 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7144102503290760656'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7144102503290760656'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/how-i-stay-current-with-scleroderma.html' title='How I stay current with Scleroderma'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>1</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-232641531435785014</id><published>2007-02-05T21:00:00.000-05:00</published><updated>2007-02-05T21:06:11.465-05:00</updated><title type='text'>What a difference a night makes!</title><summary type='text'>I wrote yesterday's Scleroderma Blog entry and my legs were sore as they have been for the past 2 weeks. Went to bed last night, had a great nights sleep unlike the tossing and turning of the previous 2 weeks, and woke up immediately noticing my legs weren't hurting. All day, no issues despite a day where the thermometer didn't rise about 20 degrees. As a friend says, "pleasure is the absence of </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/232641531435785014/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=232641531435785014' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/232641531435785014'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/232641531435785014'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/what-difference-night-makes.html' title='What a difference a night makes!'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-333352698897974846</id><published>2007-02-04T17:01:00.000-05:00</published><updated>2007-02-04T17:35:57.299-05:00</updated><title type='text'>So what hurts today?</title><summary type='text'>Before I was diagnosed with Scleroderma, nothing hurt. I was in great shape. Today, most things hurt and that hurt has become my "normal" feeling. When someone asks he how I feel, it's never "good", just "the same".Other then what I recall being about two weeks soon after visiting Johns Hopkins a month ago, my knees, hips and legs have bothered me. Even sleeping is uncomfortable as I need to </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/333352698897974846/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=333352698897974846' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/333352698897974846'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/333352698897974846'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/so-what-hurts-today.html' title='So what hurts today?'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-2565841573008238108</id><published>2007-02-01T21:12:00.000-05:00</published><updated>2007-02-01T22:34:31.988-05:00</updated><title type='text'>Johns Hopkins Scleroderma Center</title><summary type='text'>I was very lucky to get an appointment with a top scleroderma specialist, Dr Wigley, who was, in one word, AMAZING!What I report below is my understanding/interpretation of what occurred. Even if it's 100% accurate, it's what I was told and it relates to my involvement with disease which may be completely different then another individuals.I arrived at the center in Baltimore, MD 30 mins before </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/2565841573008238108/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=2565841573008238108' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2565841573008238108'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2565841573008238108'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/02/johns-hopkins-scleroderma-center.html' title='Johns Hopkins Scleroderma Center'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7198920441704285633</id><published>2007-01-30T21:51:00.000-05:00</published><updated>2007-01-30T22:20:22.343-05:00</updated><title type='text'>How scleroderma is portrayed on the Internet</title><summary type='text'>When I first found out I might have Scleroderma, I searched the Internet to try and find out what I could. Bad move! When I told others I had scleroderma, the first thing I told them was NOT to surf the Internet for information.What is shown on the Internet are the extreme cases, often of those that went untreated, and not the "norm" or 80% of what individuals with scleroderma will deal with. </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7198920441704285633/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7198920441704285633' title='4 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7198920441704285633'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7198920441704285633'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/01/how-scleroderma-is-portrayed-on.html' title='How scleroderma is portrayed on the Internet'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>4</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-7266459634359625625</id><published>2007-01-28T19:56:00.000-05:00</published><updated>2007-01-28T20:43:39.048-05:00</updated><title type='text'>Scleroderma and my skin</title><summary type='text'>The most common symptom of scleroderma and where it got its name is what they call hardening of the skin. The immune system is tricked/confused into thinking that it needs to generate collagen which is what causes the skin problem.I initially noticed it in my hands swelling which is what got me to the doctor in the first place. My hands continue to be the most impacted part. They remain swollen </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/7266459634359625625/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=7266459634359625625' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7266459634359625625'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/7266459634359625625'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/01/scleroderma-and-my-skin.html' title='Scleroderma and my skin'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-6062801918997605346</id><published>2007-01-27T12:51:00.000-05:00</published><updated>2007-01-27T13:33:30.522-05:00</updated><title type='text'>Meds, a referral and tests</title><summary type='text'>I started out on some meds to address the raynauds and discomfort.  I was given Nifedipine for the raynauds and Diclofenac as an anti-inflammatory. I don't know if it did much as I felt the same as I did before taking the anti-inflammatory.I was also given a referral to see a top scleroderma specialist. The recommendation provided to me by the rheumatologist was someone in NJ, PA and at Johns </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/6062801918997605346/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=6062801918997605346' title='0 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6062801918997605346'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/6062801918997605346'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/01/meds-referral-and-tests.html' title='Meds, a referral and tests'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>0</thr:total></entry><entry><id>tag:blogger.com,1999:blog-2026605810085414094.post-2530096052736474141</id><published>2007-01-26T10:15:00.000-05:00</published><updated>2007-01-26T10:48:04.665-05:00</updated><title type='text'>Welcome to Scleroderma Blog!</title><summary type='text'>I decided to set up a blog on scleroderma and my specific case of it. I wanted to do this anonymously so there won't be any direct reference to my name or specific location.Who am I?I'm a 40 something year old male.  I'm married and have children. I am otherwise extremely healthy.Where am I?I live in the US and more specifically, the Northeast.When did I find out I had scleroderma?In the winter </summary><link rel='replies' type='application/atom+xml' href='http://sclerodermablog.blogspot.com/feeds/2530096052736474141/comments/default' title='Post Comments'/><link rel='replies' type='text/html' href='http://www.blogger.com/comment.g?blogID=2026605810085414094&amp;postID=2530096052736474141' title='2 Comments'/><link rel='edit' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2530096052736474141'/><link rel='self' type='application/atom+xml' href='http://www.blogger.com/feeds/2026605810085414094/posts/default/2530096052736474141'/><link rel='alternate' type='text/html' href='http://sclerodermablog.blogspot.com/2007/01/welcome-to-scleroderma-blog.html' title='Welcome to Scleroderma Blog!'/><author><name>Scleroderma Blog</name><uri>http://www.blogger.com/profile/06757088123877348789</uri><email>noreply@blogger.com</email><gd:image rel='http://schemas.google.com/g/2005#thumbnail' width='16' height='16' src='http://img2.blogblog.com/img/b16-rounded.gif'/></author><thr:total>2</thr:total></entry></feed>
