Sarcoidosis Support Group Introduction and Origins
My Story with Sarcoidosis
I was diagnosed with sarcodosis in June, 1998, but that is not the beginning of the story. In April, 1994, when I was walking a great deal as a security officer at a private college in Maine in the northeast corner of the U.S., I began to have pain in one of my ankles when I walked at a brisk pace. At first I thought little about it, considering it was a pulled muscle or tendon. The pain gradually became more intense. My family doctor felt I was suffering from tendonitis and prescribed an anti-inflammatory. The other symptoms I was beginning to suffer (low grade fever, fatigue, more frequent headaches, cough that persisted long after a head cold had passed) were dismissed as not being related.
The ankle pain did not improve; on the contrary, it worsened and the other ankle began to have the same type of pain. Even my elbow joints seemed to be hurting. I noticed some bumps along my shinbones and the ankles seemed somewhat swollen, so I returned to my family doctor. This time he referred me to an orthopedic specialist, thinking that it was a bone or joint problem. The orthopedist diagnosed Lyme Disease and more medication, but the pain persisted.
Then one day I found I could not stand on my ankles long enough to walk even ten feet across a room in my house. Needless to say, I was scared to death. Here I was, unable to walk and only getting worse with no satisfactory diagnosis or treatment. I once again called my family doctor and was referred to a rheumatologist in a nearby city.
The rheumatologist performed tests and procedures, including a chest x-ray. He told me that I had a problem called erythema nodosum, which was causing the pain in my ankles and other joints as well as the bumps on my shins, the swelling, the low-grade fever, and fatigue. He said I might develop red patches on my skin around the joints, but that did not happen. I was prescribed with oral Prednisone. During my discussion with the doctor, he vaguely mentioned Lofgren's Syndrome and sarcoidosis, but did very little to explain the terms or possible ramifications. I was never told of the abnormal findings in the chest x-ray taken at that time. Within about 4 months of my initial symptoms I was much better and dismissed the episode as a mere hiccup in my life.
Over the next two years I worked many hours at my job and continued to be a homeowner and single parent to my youngest child who was then a teen-ager. Any symptoms I may have had during that time were likely dismissed as burnout from too much work. Then I became involved in a very stressful situation at my workplace and started to have some seemingly unrelated medical problems. I took some time away from my job, thinking that the long hours of work and the stress occurring on the job was the cause of all my problems. But somehow I just didn't get better beyond a certain point. I had days I felt really good and others when the fatigue and depression and joint pain and headaches were overwhelming.
I decided I just had to work harder to get my life back on track. I started working more on my computer at home and meeting people online. In a chat area I met a special person who lived in Australia. We spent a great deal of time getting acquainted and eventually decided to meet. In April, 1998, I ventured 10,000 miles from the east coast of the U.S. to the east coast of Australia and wed my very special person. Then I returned home to make preparations for a permanent move to the Land of Oz. For my permanent visa I needed a chest x-ray to rule out tuberculosis. I didn't think twice about there being a problem and was in shock when my doctor contacted me to say there was a significant problem with the x-ray. He sent me to an Internist within two days, and I underwent a battery of tests--blood, urine, pulmonary function tests, CT scan, complete eye examination, bronchoscopy. . . the works. Even before the tests, once I had spoken to the doctor about my history and seemingly unrelated symptoms, he was quite sure about the diagnosis. The tests, which were completed in mid-June, 1998, merely confirmed his suspicions, sarcoidosis! I now had an explanation for all the strange symptoms I had been experiencing for four years. It was nice to know I wasn't "crazy," but quite a wedding present to come to terms with.
Now I am with my wonderful new husband in the Land Down Under and looking forward to all kinds of new experiences. Sarcoidosis symptoms continue to disable me some days. On those days I still try to live life as well as possible for that moment, even if it means sitting quietly in a chair reading a book or sitting on the patio and watching the colorful birds which swoop across the yard and settle in the trees. We take one day at a time and on the good days we make up for lost time from the "other" days. We have endless dreams for the future. . . we intend to fulfill as many as possible.
Wow, what a difference a few short years can make! I've gone from being an independent, employed, healthy, single mother who lived all her life in Maine USA to being a somewhat insecure, unemployed, chronically ill, married lady who resides "down under" in the land of "Oz." It sure has been a bumpy ride, but I wouldn't have missed it for the world. For all the things I've had to give up, I have gained so very much. I have my fantastic husband who is forever caring, understanding, and supportive. I have an amazing new country to explore when I am well enough. I have two faithful little mini-dachshunds who bring many smiles and much comfort to my life. And I have this Website and all the wonderful people from many countries whom I've met since I began this endeavor just a year ago. Despite the discomforts I am content in a way I never thought possible.
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 told that I have 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.
Despite the challenges involved in coping with daily chronic pain, Rob and I have been able to realize a number of our dreams. We have visited the stunning Blue Mountains where I climbed down to one of the Three Sisters pinnacles. We have mingled with kangaroos. And we have walked the fantastic beaches that line the coast, collecting shells and wading in the warm Pacific Ocean. We have yet to visit the hot, fly infested Outback and view koalas in the wild not far from here and take a camel ride along a nearby beach. We continue to live one day at a time, changing what we can, accepting what we must. We are together, we are happy, and we have many dreams yet to fulfill. . .
Time has a way of disappearing in large chunks these days. It's difficult to believe that it's fast approaching the second anniversary of this Web site. The past year has been difficult, but filled with more adventures and changes in our lives.
First of all, my sarcoidosis does not seem to be very active at the moment, and that is very good news. However, I am not so fortunate with my fibromyalgia, and that has become a significant challenge. It gives new meaning to the well-known prayer, "God, give me the courage to change the things I can, the serenity to accept the things I cannot change, and the wisdom to know the difference." This simple little prayer quite succinctly expresses the foundation of the daily battle to maintain one's quality of life with fibromyalgia. Fortunately, I now have a primary care doctor and a fibromyalgia doctor who are totally supportive of me. Together with my truly wonderful Aussie hubby, these doctors allow me to believe in myself and what I feel. I truly believe that a strong support system of medical practitioners and family is of vital importance in maintaining quality of life with diseases such as sarcoidosis and fibromyalgia.
Last December, when it became apparent that my mother's health was failing and Rob still was unable to find employment in his own country of Australia, we decided that it was important to return to the States. We made our plans, and had a few final Aussie adventures. Despite my discomfort and fatigue, I was able to fulfill my desire to take a camel ride along the beach and dunes of the Australian coast. We also drove to the edge of the Outback, so I could see the red soil and flat, open vistas that are a major part of the thousands of square miles of Outback in the center of the Australian continent. Unfortunately, I never had the opportunity to see the elusive koala in its natural habitat, but many Aussies have never done that either.
Rob, Rose (my wonderful canine sidekick), and I made the long, tiring trip back to Maine in March. Rob was quickly initiated into the rite of shoveling snow. He had only seen snow once in his life and had never before seen it falling from the sky, so it was quite an experience for him. I made the mistake of letting him go outside to shovel the path/drive without explaining how it should be done. Imagine someone who has absolutely no concept of winter and snow trying to do such a thing. The result was quite humorous. When I went outside, I found a 6-inch wide trail from the bottom of the steps to the car door, nothing more. Needless to say, I then explained the finer points of snow shoveling to my poor little "Aussie icicle."
In a few weeks we expect to be moving to our new home in the woods on an island off the coast of Maine. It is connected to the mainland by bridge and has a population around 1,000. Our home is on two wooded acres with the most wonderful gray, moss-covered ledge behind it. I already have my bird feeders ready and am dreaming about the flowers and shrubs I want to plant. We will have a large deck facing the woods where I expect to spend much of my time in good weather.
Last year I promised to add a page to this site about fibromyalgia. It seems that many individuals with sarcoidosis are also diagnosed with this little understood condition, and many others may have it without knowing, because their medical practitioners have not bothered to tell them about it or the possibility of their developing it secondary to their sarcoidosis. Therefore, I feel it is very important to provide such information to you and have finally been able to fulfill my promise. The new Fibromyalgia Connection section contains an informational page and a resources page.
My second promise was to tell you about my experience in gaining Social Security Disability benefits. The most significant aspect of my case is that despite the more than 15 months that elapsed between my initial application for benefits and the arrival of my first benefits check, I was never denied benefits. Also of importance is the fact that I never used an attorney to assist me.
This will soon be a section of interest to family care-givers. It is a cautionary tale about care-giver burn-out, in particular, a spouse who tried to "do it all" on his own, i.e. job, care-giving, and managing household. I will have this update online as soon as I get the rest of the Website up and running.
My Social Security Disability Tale
August 1998 - October 1999
When I married in May 1998, my husband and I decided we would live in his country of Australia for a few years, so he could be closer to his young children (mine were grown). Thus, after the wedding I returned to Maine to pack up my life and initiate the paperwork for my permanent visa to Australia. Despite the fact that I still hadn?t fully recovered from what I thought was ?burnout? from too much work and stress in my life, I did not expect to encounter any problems with my physical exam. It was quite a shock when the chest x-ray showed abnormalities that were eventually diagnosed as sarcoidosis.
Since I had already been unable to work for more than a year at that point, the diagnosis of a chronic condition made me wonder if I would ever again feel well enough to do so. Therefore, I felt I should investigate the reasonableness of filing for Social Security Disability benefits for whatever period I had been/might be unfit for work. I made initial inquiries and decided to complete the basic paperwork before leaving for Australia in July 1999. In August 1999, I sent off the the more detailed forms and medical practitioner information to the International Operations Division of Social Security in Baltimore MD. Since I was not living in the U.S., my file reverted to them, and over the next 14 months the ongoing excuse for my case's inactivity was the overwhelming number of cases that office handled.
From August 1998 to February 1999 I heard nothing at all from the SSA despite my efforts to obtain a contact number or contact person who could tell me about my case. I eventually was told to contact the Office of Veteran's Affairs in the Philippines (no, I'm not a vet, and no, I don't have a clue why this is what I was told to do). The only "help" I received there was that their eventual inquiries to the SSA in Baltimore evidently brought to someone's attention that my case had been "mislaid" for seven months (yes, someone actually admitted to me that they didn't know where my file had been during that period).
Knowing how totally frustrated I had become at the lack of information and assistance provided by the OVA in the Philippines, my older son suggested I contact my U.S. Senator's office for help. Dan is in the Air Force and stationed at Andrews AFB outside Washington DC. His brother-in-law is an assistant to Senator Olympia Snowe in her Washington office, so they often saw each other and had been talking about my frustrations. I initially contacted my son's brother-in-law, and he directed me to a person in the senator's Portland ME office. Around that time, because of my calls to the OVA in the Philippines, I also started getting some communications from the SSA. They weren't very helpful, but at least I now had a name and address where I could direct my communications, and I had someone in Senator Snowe's office making noises, too.
In June 1999 I was finally diagnosed with fibromyalgia as well as the sarcoidosis. Once I was able to get the documentation together and write another long statement of my own about my daily activities (or lack thereof), August had rolled around once again. I sent off all the new paperwork to add to the original sarcoidosis documentation and waited some more. It was beginning to look like I would be facing an appeal of my case, which would be terribly complicated because of my international residence. I had no idea how I would deal with appeal hearings or how I could retain an attorney to represent my interests.
October arrived with no indication that my case was even close to being resolved. In fact, I actually received another letter from the head of the international operations office of SSA saying that it still might be some time before a decision could be made, but that they were making every effort to expedite the matter (ha!). Then the unbelievable occurred.
In mid-October a brown government-type envelope arrived in the mail. It contained a check for my October Social Security Disability benefit. Around that time another envelope arrived containing a Medicare card, and after that a check arrived for all my retroactive benefits (from February 1997 minus the five-month waiting period). There was no letter and no other information in any of the envelopes, so I wasn't sure it was really true that I'd been approved. I didn't dare cash the first check until Senator Snowe's office was able to confirm that I had, indeed, been approved for benefits. It wasn't until some months and several inquiries later that I was able to obtain the approval letter, and I've only recently been able to obtain informational materials that were supposed to be included with the initial check and Medicare card.
Now, you ask, why did I suddenly become approved for disability benefits after all the foot-dragging? That's a really good question, and one my husband and I have discussed at length. Our only conclusion is that the diagnosis of the fibromyalgia (which is an approved disease for SSA Disability, while sarcoidosis still is not) was the deciding factor. There was just about enough time for the documentation to arrive and be fully processed before I started receiving benefits.
And how is it, you ask, that I was able to accomplish this feat of approval without appeal? I can only suggest that my constant perseverance and the help of Senator Snowe's office prevailed. I obtained careful documentation from all my doctors, I asked Rob to write a letter about my condition from his perspective, and I wrote two long letters myself about my condition and daily activities. I made sure that everything was as detailed as possible, and tried to respond to any SSA requests as promptly as possible, even if it was just to say that I couldn't provide the requested materials for a certain period of time.
I have one further observation that I hope all of you will consider if you apply for Social Security Disability benefits. If you hire an attorney to help you (as most literature suggests is THE THING TO DO), he (she) will be paid a percentage of the retroactive benefits you eventually receive. The longer the wait, the more he will get. (Note: I just recently found a source that states there is an eventual cap on the amount an attorney can claim, but it did not state how high the cap has been set.) And if the case has to be appealed, there will be an even longer wait with more potential retroactive benefit money accruing. It would definitely be in the best interests of an attorney to drag out the case as long as possible with as little of his own time put into it as possible. Soooo, be sure to obtain in writing exactly what services your prospective attorney will perform for you and the exact fees/percentage he will charge. Then carefully weigh all your options before deciding to hire any attorney. It could be a very lengthy and costly decision.
For further information, visit the Social Security Web site's, "Social Security Disability Information" page and a very helpful page on the CFIDS/ME Website, "Applying for Social Security Disability Insurance (SSDI)". Both Web pages provide links to a substantial amount of non disease-specific information.
Sarcoid Connection Origins
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 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.
And finally, I am establishing a list of individuals who wish to communicate with others having sarcoidosis and initiating a chat area that can be accessed from my Web Page. Be sure to check my home page for the link and the best times to chat. If you visit my page in its early stages, you will need to contact me by e-mail to receive much of the information I have compiled about sarcoidosis, support, and caring. I am hoping to have more pages on the Website very soon. I look forward to hearing from you about questions, concerns, suggestions, etc. I want very much for this to become a group effort, so input is always appreciated. Thank you and take care.
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, that 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."
Compiled by Chris Townsend, Sarcoid Connection