Janey Willis

The most important thing I learned was that 'not knowing' is far worse than 'knowing'.

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 trained in Adobe Dreamweaver for this amazing 5,000+ page site in 23 languages.

In May 2009, I was saddened by the death of our longtime Assistant News Guide, Judy Tarro, who died suddenly, having just posted news articles up to a few days before her death. At this time Jeannie McClelland joined the news team as an ISN news guide.

In June 2009, I was promoted to ISN News Director. Our site is now 5,000+ pages and I am still actively involved in building the site, through both the addition of news articles to the site, as well as building new sections and topics of the site.

In June 2009, I developed the Vascular Involvement page and became the ISN Guide to Vascular Involvement.

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 [email protected].

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 hardheadedness 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 cyclophosphamide. The intention was to stay on it for a year, then switch to cellcept. Unfortunately, my cycyclophosphamide 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 straightened 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 healthcare, and keep the faith.

November 2009 Update

In the spring of 2008 I switched cardiologist when my current cardiologist told me there was nothing else he could do for me. My shortness of breath (dyspnea) was getting worse and I was experiencing strange heart palpitations and heartbeats. My new cardiologist immediately determined that much of my problem was due to lack of sensitivity in my pacemaker. It was not sensing an increase in activity required to increase my heart rate accordingly. She made a couple of adjustments and then signed me up for a 3 month cardiac rehabilitation program. WOW! What a difference that has made to my quality of life. I can now do 45 minutes without stopping on the treadmill at a speed that can be considered walking, not strolling. This increase in physical ability has been transferred into my daily life with short walks around the neighborhood, increased ability to run errands without getting totally wiped out, and more enjoyable vacations.

The strange thing is that even though my exercise endurance has increased, my lung function based on pulmonary function tests (pfts), is showing a decrease. My August PFTs showed a significant drop in total lung capacity and diffusion capacity (DLCO) from January. After an high resolution CT, echocardiogram and video swallow test, it was determined that my decrease may be due to aspiration. The swallow test showed that I have oropharyngeal dysphagia and that my epiglottis fails to completely cover the trachea during swallowing leaving me open to the possibility of aspiration. To help decrease the effects of this type of dysphagia there are several exercises that I do daily to help increase my ability to swallow safely and to decrease the possibility of aspiration.

May 2010 Update

I made it through the winter by literally hibernating. I left the house as little as possible because the cold and cold air literally stopped me in my tracks. This year was worse than previous years when I could at least tolerate the cold to a certain extent. This year, my body had absolutely no tolerance for the cold at all. I couldn't breathe and I was cold from the inside out. Even with lots and lots of layers, I required a bottomless cup of tea that lasted the full day. This was the only thing that kept me comfortable.

Good news - In December my lung function test results showed significant improvement in all categories. The only thing we could credit the improvement to was the knowledge of the aspiration and the efforts to reduce it through exercises and a few more lifestyle changes. Today (Sunday, May 16) I received a call from my cardiologist saying that the results of my ECHO last week showed my pulmonary artery pressure was NORMAL! My ejection fraction is higher than it was 1.5 years ago, so that's a good thing. The tricuspid valve regurgitation doesn't appear to be getting worse. I do have a high level of regurgitation, but it is mainly attributed to the electrode wire that goes through the valve opening and into the right ventricle. So stable is good.

September 2011 Update

In September 2011, I retired as ISN News Director and several other ISN positions in order to focus on my booming educational consulting business.

I am passionate about the ISN and its vital outreach, so I will be keeping my role as an ISN Sclero Forums Support Specialist. I also look forward to returning to the ISN in other capacities in the future.

Related

MJ's Kitchen - Quick and easy recipes with basic ingredients

MJ's Kitchen. In April of 2011 I started a website on which to post recipes that I have developed over the years. My goal for the website was to supply people with healthy, easy to make recipes. I've always loved to cook but when I got sick in 2002 cooking became difficult. The fatigue was overwhelming so just making a cup of tea was work. It took a couple of years but I finally got myself back in this kitchen on a limited basis. It was a this time that my focus on cooking was to make a meal that tasted good with as little of effort as possible. Because I know that I am not alone, I decided to share the results of my efforts with others that might benefit. I hope you visit MJ's Kitchen and find something that you like. Janey Willis.

Janey Willis: ISN News Director

Janey Willis has been promoted to ISN News Director. Janey has worked as a News Guide for over 3 years and as News Manager for over a year. She is also ISN Assistant Webmaster, actively helping to maintain and update the ISN website, among many other positions. Posted 06/08/09.

Janey Willis: ISN News Manager

Janey Willis has been promoted to ISN News Manager to work with the ISN news guides and to manage the ISN Newsroom. Janey has worked as a News Guide for over 3 years. She is also ISN Assistant Webmaster in helping to maintain and update the ISN website, among many other positions. Posted 04-06-08.

Janey Willis: ISN News Guide

Janey Willis has been promoted to ISN News Guide, to manage the ISN's Newsroom. Janey has worked in the ISN Newsroom for over 3 years, and she is also ISN Assistant Webmaster, among many other positions. Posted 02-12-08.

New Pages: Diabetes by Janey Willis, ISN Guide to Diabetes

Autoimmune Diseases: Diabetes. Topics of this new 11-page section include symptoms, causes, diagnosis, treatments, research, personal stories and media stories about diabetes, by Janey Willis, ISN Guide to Diabetes. Posted 05-01-06.

Janey Willis: ISN Website Assistant

Janey Willis: ISN Website Assistant. Janey, who is ISN Technical Writer, ISN Assistant News Guide, and an ISN Support Specialist for Sclero Forums, is now also preparing and posting ISN news and medical items for the website, using the Macromedia Contribute program, and creating a manual for it, as well. Posted 03-21-06.

Janey Willis: ISN Assistant News Guide

Janey Willis: ISN Assistant News Guide. Janey, who is an ISN Support Specialist for the Sclero Forums, has taken on an additional role, working with the ISN News team. Janey will be posting some articles from the ISN Newsroom to the Sclero Forums online message board community. Posted 12-08-05.

Janey Willis: ISN Support Specialist for Sclero Forums

Janey Willis: ISN Support Specialist. Janey has joined our volunteer force as ISN Support Specialist for Sclero Forums. Sclero Forums provides free online support 24-hours a day to worldwide members. Posted 10-04-05.

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