My name is Janey Willis. I'm a fifty-something woman living in the high desert of New Mexico, USA. Some of my time is spent working as a freelance technical writer for educational organizations focusing primarily on emerging technologies (such as micro and nanosized biomedical devices). The rest of my time is spent trying to enjoy life with my husband, my family and friends, my cats, and whatever else my health allows me to do.

In August, 2003, eight months after retiring from 25 years in education, I was diagnosed with systemic scleroderma and polymyositis or mixed connective tissue disease (MCTD). For a year I had been developing new symptoms every month. First carpal tunnel, then Raynaud's, irritable bowel syndrome (IBS), heartburn, uncontrolled weight loss, joint pain, muscle weakness and fatigue (just to name a few). The most important thing I learned from this initial experience was that 'not knowing' is far worse than 'knowing'. When I finally had a name for what was happening to me, I was actually relieved. It provided the information I needed to begin learning about my diseases so that I could work with my doctors on the various health issues that I am dealing with and may have to deal with in the future.

As an educator, one of my duties was to advise and counsel students on educational and personal issues. That portion of my job was as rewarding as being in the classroom. I am happy for the opportunity to continue to work in an advisory and support capacity as an ISN Support Specialist. I have witnessed first hand the value of Sclero Forums and the sincerity and supportive attitudes of its participants.

As of December 2005, I also joined the news team as an ISN Assistant News Guide. In that role, I assisted with posting some news items from the ISN Newsroom to the Sclero Forums message boards, on an as-needed basis.

In February 2006, I became an ISN News Guide, researching and preparing Autoimmune and Media news. This role has continued to expand into the research of Scleroderma Medical News as well.

I was quickly promoted from that role, in March 2006, to being an ISN Website Assistant, using the Macromedia Contribute program. As an ISN Technical Writer, I have also developed training materials for other ISN news guides and Contribute users.

In May 2006, I became the ISN Guide to Diabetes, establishing the new diabetes section on this website. In August 2007, I also became the ISN Guide to Emotional Adjustment. In the Fall of 2007 I created a section on Mainstream Medications and a page on Fatigue as a symptom of scleroderma. I continue to work with the ISN webmaster in updating and improving the numerous pages on this wonderful site.

In February 2008, I became the only ISN News Guide when Sherrill Knaggs, my dear long time mentor and friend, retired from that ISN role in her final days. In April 2008 I was once again promoted to ISN News Manager and began training a new ISN news guide, Dave Becker. I have also been ISN Assistant Webmaster for some time now, having outgrown Adobe Contribute by being fully trained in Adobe Dreamweaver for this amazing 2,000+ page site in 22 languages.

I look forward to working with you in providing the invaluable support that we all need in order to live each day to its fullest. Please feel free to write me anytime at janey-willis@sclero.org.

December, 2007 Medical Update

It's been five years since the onset of my symptoms. A lot has happened and a lot hasn't happen. My carpal tunnel went away, but the Raynaud's is here to stay. I've been able to control it so it is more of a nuisance than a serious problem. I do believe I have Raynaud's of the lungs because I can't breathe in cold air or eat or drink anything cold without going into an uncontrollable cough. I've made several lifestyle changes to address these problems.

In January 2005 I developed complete heart block and had to have a dual-lead pacemaker "installed." Boy, did that make a difference! Within hours I felt like a new person. Eight months later I developed atrial fibrillations which, once again, slowed me down some, but I'm still moving.

A year later, the fall of 2006, I was diagnosed with mild pulmonary hypertension and pulmonary fibrosis. I was put on supplemental oxygen when I sleep or "move". My oxygen saturation was dropping into the 80's whenever I walked causing me to become lightheaded and short of breath. Carrying an oxygen tank around was hard to get use to; however, the feeling I would get without it was not worth the hardheadness of leaving it at home. For pulmonary hypertension I was prescribed Bosentan. In just a few months my pulmonary artery pressure (PA) dropped from 45 to 30.

As a result of developing lung problems, I was taken off Methotrexate. I tried Imuran, but the side effects were unbearable. In December 2006, I was put on oral cytoxan. The intention was to stay on it for a year, then switch to cellcept. Unfortunately, my cytoxan experience only lasted a month. It suppressed my immune system to the point that a common cold eventually lead to septic shock. Needless to say, I survived that ordeal. I was put on cellcept in March 2007 and was able to handle that quite well. It has taken a year to get back to where I was before but I can honestly say that, overall, things are better than before. All my bloodwork is normal and I'm able to run errands and do a little exercise now and then (as long as I wear my oxygen). Based on my pfts, my lungs are stable. My PA pressure appears to be stable as well.

For my polymyositis I receive IVIg infusions. For the past two years, I've been getting a 3 day infusion about every 4 - 6 weeks. I'm now up to every 7 weeks. It seems to be the only treatment that reduces my CPK (muscle enzymes) which is a measure of the inflammation caused by polymyositis. These treatments have also helped tremendously with decreasing my fatigue and increasing my energy levels.

What has NOT happened? My kidneys and liver are in good shape. My gastrointestinal tract appears to be working good. I take two Prevacid a day for the heartburn (reflux). As long as I follow my rules to prevent reflux and take my Prevacid, I don't have any problems. My skin never hardened past my wrists, in fact, it has softened. The skin on my fingers is tight, but not hard. My fingers straigtened back out so that all I have is a slight curve. The microstomia (small mouth) and difficulty in swallowing went away as did my hip and knee pain. I do get hip pain at night sometimes, but nothing I can't walk off. My most bothersome symptom is a chronic cough. It happens so much that it's been hard figuring out what triggers it. I think it's a combination of heartburn, lung problems, heart problems and the cold. Just gives me something to work on.

All in all, I believe that my MCTD has finally become stable. Nothing seems to be worsening and there have been some improvements. Hopefully, in a few months, I'll be able to say I'm in "remission". I would never have made it this far without the support and love of my wonderful husband. I could write a book on him!

Stay as active as possible, keep your friends and family close, try to maintain the best attitude possible, be proactive, be your own advocate for your healtcare, and keep the faith.