October 1998

When I was diagnosed with sarcoidosis, I was stunned. As a newlywed preparing to move to my husband's home country of Australia, I was intent on building a new life after many years as a single parent. The prospect of living the rest of my life with a chronic disease about which I knew nothing was beyond my comprehension.

After the initial shock waned, my husband and I had questions . . . questions about the disease, its symptoms, its prognosis, medical care . . . questions about coping with having a chronic disease, maintaining quality of life, sustaining health to the highest degree. However, we received very few answers. Even the "specialist" in my area was not able to provide us with more than general information. Other doctors had never treated a patient with sarcoidosis and knew nothing at all about it. My friends and family had never even heard of it. And there did not seem to be any support groups for sarcoidosis patients anywhere nearby.

For the first few weeks after my diagnosis, my husband and I talked and packed, then packed and talked. It was a never-ending cycle with few positive results. We returned to Australia where the cycle continued, only we talked and unpacked, then unpacked and talked some more. Then we found a general practitioner to take on my primary medical care and provide a referral to a specialist for my sarcoidosis. Once again, the doctor had never treated anyone with sarcoidosis and was not familiar with any medical practitioner specializing in the disease. He did provide me with a referral to a respiratory physician in a nearby city, but the appointment was scheduled for six weeks in the future. I was having new, unsettling symptoms and still didn't know if I would be seeing someone who could give me information and proper medical care. I had no luck in finding any kind of support group in my area. I decided it was time to take back some control over my life.

The first step was to learn about "my disease." The most logical place to begin appeared to be the Internet, since I had already found that information about sarcoidosis was greatly lacking in the medical communities of both the US and Australia. I spent hours searching out information and gradually felt that I understood some of the aspects and ramifications of this insidious disease. Then I searched for any sarcoidosis support groups I could find on the Internet. I found a few, but none seemed really suitable for my needs. The type of forum, the distance from the source group, the accessibility and scheduled times of any live chats, the absence of personal contact. . . all these aspects and more seemed to provide roadblocks to my success in finding others with the disease with whom I could communicate on a regular basis. I felt that if I was having a problem in readily locating specialized medical care, information about sarcoidosis, and support from others, then there must be other people who have the same problems. I decided to change that, if only in a small way.

Because of my health, I am not able to search for a normal job here, but I want to remain active in body and mind as much as possible. I was always very independent all my life, but I suddenly feel as if I am a burden to my new husband. I want to make a contribution to our future together by looking ahead in a positive way. Thus has been born the idea of initiating a sarcoidosis support-networking group to fulfill the needs of some of those, like me, who have not been able to find the information, care, and support they so greatly need.

I have named this organization the Sarcoid Connection. Originally, the sub-heading was to read, "Serving the People of the Hunter Valley Region," but I found that it would be possible to reach individuals almost anywhere in the world if I utilized more than one forum for communicating, depending upon the particular needs of the individuals who contacted me. Therefore, I have now added, ". . . and Beyond" to the name. I have adopted a logo of a wine bottle, bunch of grapes and piece of grape vine to honor the wine country of the Hunter Valley where I now live and to provide a symbol of good health.

My major goals for the Sarcoid Connection include:

• Providing information about sarcoidosis, medical care providers specializing in sarcoidosis, and coping with this chronic disease that has no cure.
• Providing much needed support to those increasing numbers of people who are diagnosed with sarcoidosis and are eager to learn, cope, and proceed with their lives in a positive manner.
• Utilizing various forums for communication including the Internet (chats and e-mail messaging), letter-writing, telephone calls, and "live" support group meetings (to provide information as well as support) for individuals to use to contact others with the disease.
• Including any carers, other family members, and close friends who are interested in the health and welfare of a sarcoidosis patient in any of the networking available.
• Assemble a list of names and contact information of people who wish to make communicate with others about sarcoidosis.

Providing information and support are certainly the most important aspects of such a networking group. Beyond those basic tenets I feel that there is a need to provide more than the most common "live" support group meetings and Internet-based communications. There is still a large segment of the population that does not have ready access to the world of the Internet. And there are also individuals who may not be able to attend meetings because of disability, schedule conflict, proximity to the meeting site, etc. Thus, I feel it very important to be able to reach this segment of people via letter-writing and telephone calls or whatever other means may be appropriate.

Many sarcoidosis patients will admit that the physical symptoms of the disease are not their only barrier to a normal life. The emotional aspect of having a chronic disease, combined with psychological symptoms of the disease such as an extreme feeling of fatigue, depression, and unexplained irritability can create a considerable disruption to their daily lives and to their relationships with their family/friends. The patients may be the central issue in this disruption, but the people around them are also involved in a very intimate manner. The understanding and caring of those most often interacting with the patients are vital to their sense of wellbeing and desire to progress in a positive manner. Statistics indicate that individuals in many illness categories live longer, more productive lives if they are married or have another very strong, positive support bond with someone (for those living alone, it may be a pet). Therefore, it is very important that those closest to the sarcoidosis patient also have the same resources for information and support available to them.

We have reached another milestone with the Sarcoid Connection. A year has passed since its inception, and both the Website and I have evolved considerably.

I have been told that my sarcoidosis is fairly stable, but I have some fibrosis in my lungs that will likely give me certain symptoms for the rest of my life. In addition, just a year after my sarcoidosis diagnosis, I was also diagnosed with secondary fibromyalgia. Both conditions continue to cause me considerable fatigue and depression, aches and pains, but I feel fortunate that I am able to cope without the use of potent medications like corticosteroids and narcotic pain killers. Despite the limitations caused by my medical problems, I feel that I have taken back some control over my life. I try to enjoy each day if only in some small way, and I no longer take anything for granted, least of all my wonderful husband of more than a year now. He has become the light of my life, my beacon in the darkest moments of chronic pain.

This Website has evolved in ways I never imagined just a year ago. I have regularly added to the information provided. It now contains considerable basic information about sarcoidosis, entire sections of information in support of both patients and caregivers, a "sharing" section of various writings and graphics authored by and/or for people with sarcoidosis, and a substantial glossary/reference library. In addition, there is a sarcoid list for those who want to contact and be contacted by others with sarcoidosis or caring for someone with sarcoidosis. There is a chat area in the ICQ communications forum, and I have just established a Webring for sarcoidosis related sites that I hope to have fully operational by the middle of the month. In addition, there is a guestbook that people use to leave messages and ask questions.

The Sarcoid Connection Website attracts visitors from many countries. The core group of people who utilize the list and chat areas come from Australia, New Zealand, U.S.A., Canada, U.K./Europe. They consist of "sarcoidians" as well as caregivers, males as well as females, and the 50+ age group as well as the 20+ age group. Beyond the obvious fact that sarcoidosis has become an important part of their lives, they seem to share other aspects as well. Most report having led busy and fulfilling lives "before sarcoidosis." They also make it clear that they want to learn about this chronic disease and how best to cope with it so they can once again enjoy life to the fullest extent possible. They refuse to give up, and they want to share their experiences so they can learn from each other. They are truly a wonderful and amazing group of people, and I wish each and every one of them a very happy and fulfilling future.

The second year of this Web site is nearly completed. I have not felt well enough much of the time to work on the site, but I set two goals last year that I feel are very important and worth the extra effort it has taken to complete them in recent weeks. First, I have completed two pages about fibromyalgia, a condition that affects many individuals who have sarcoidosis. I hope you will take the time to visit the Fibromyalgia Connection to learn about this mysterious and oftentimes debilitating condition. I have also just completed an outline of my "adventures" with Social Security, which will explain how I obtained disability benefits.

I also set a third goal in January of this year that I have yet to complete. My very best friend in Australia also struggled with sarcoidosis. However, her lungs were severely affected and her situation deteriorated substantially during the time I knew her, until she was placed on the waiting list for a lung transplant. She did not survive the waiting period and died quietly with her family just after the holidays. She was a very special person and a wonderful friend. I miss her very much and want her to know how important she was to me, so I have been planning to dedicate my next "Sharing" page to her. I hope to finally have it ready in the next few weeks, so be sure to visit Sarcoidians Sharing-A Special Place to view this special memorial edition. [The Sarcoidians Sharing page was successfully published for a number of years, but had to be retired when my health declined.]

My goal for the coming months is to respond to the backlog of guestbook and email messages that has accumulated during recent months when I have had to limit my computer time. For those of you who have not received a response from me, I have read all your messages carefully and appreciate the comments, questions, feelings expressed in them. I will make every attempt to reply fully to each message as my health allows. Meanwhile, I continue to say to all of you, "Take one day at a time, and live each to its fullest."