tag:blogger.com,1999:blog-20266058100854140942008-07-13T00:26:29.953-05:00Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-2026605810085414094.post-48769440548926973352008-06-18T19:47:00.003-05:002008-06-18T19:54:20.213-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-34952850603442115622008-03-04T20:06:00.002-05:002008-03-04T20:09:11.308-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-33394373717252817372008-01-04T07:11:00.000-05:002008-01-04T07:17:02.420-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-84643887934917788862007-12-06T21:08:00.000-05:002007-12-06T21:12:39.811-05:00

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,

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-7575937677716105582007-11-07T21:56:00.000-05:002007-11-09T06:52:15.828-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-48888288581330939152007-10-24T18:48:00.000-05:002007-10-24T18:53:47.809-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-52240838024308464442007-09-20T22:15:00.000-05:002007-09-20T22:20:31.913-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-39614711522728677972007-08-02T05:37:00.000-05:002007-08-02T05:39:29.061-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-83926172967251982522007-07-27T20:38:00.000-05:002007-07-27T20:43:40.461-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-40699204679289678902007-06-06T20:57:00.001-05:002007-06-06T21:01:48.870-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-84336914824594407872007-05-14T05:49:00.000-05:002007-05-14T05:55:50.922-05:00

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 & 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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-80291569300047860492007-04-21T17:19:00.000-05:002007-04-21T17:21:29.640-05:00

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!

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-87560430438602091142007-04-16T19:46:00.000-05:002007-04-16T19:59:14.667-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-10567522559745197112007-04-10T08:21:00.000-05:002007-04-10T08:26:11.825-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-7987271432259328982007-04-05T09:45:00.000-05:002007-04-05T09:48:18.925-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-17281181827908114722007-04-01T15:49:00.000-05:002007-04-01T16:00:15.654-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-51949454746048654232007-03-28T16:35:00.000-05:002007-03-28T16:41:31.670-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-62158855904394553372007-03-23T21:02:00.000-05:002007-03-23T21:06:59.650-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-13637206432266572372007-03-13T19:25:00.000-05:002007-03-13T19:34:33.666-05:00

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.

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-30366157265132403702007-03-05T08:51:00.000-05:002007-03-05T09:01:21.410-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-71544523220664898592007-03-01T09:06:00.000-05:002007-03-01T09:18:04.344-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-59180050536215087042007-02-26T09:30:00.000-05:002007-02-26T09:38:33.601-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-70016492017394601232007-02-22T19:45:00.000-05:002007-02-22T19:49:53.207-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-78742611100754893572007-02-21T08:40:00.000-05:002007-02-21T08:48:52.245-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comtag:blogger.com,1999:blog-2026605810085414094.post-68020697380354759522007-02-13T22:35:00.000-05:002007-02-13T22:49:01.732-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com