March 2002      


 

masthead

 

 

  1. Announcement
  2. What's Online at CSSA
  3. Contests
  4. The Fine Print
 



 

1.  Announcement
 

We're sorry to advise that this will be the next-to-last issue of The Syndrome Sentinel e-Newsletter.  Those of us involved in its publication and that of the previous printed version have tried to bring you the latest information and research on 'invisible' illnesses for close to six years.  We thought we'd be able to publish the simpler email version without pushing ourselves too hard, but we were wrong.   Those six years have taken their toll on us, and we've collectively decided that we would be better served by focusing instead on having more fun and pleasure in our own lives. 

We have no regrets about our time spent helping others navigate the choppy waters of living with these illnesses; we know we've been successful.  The reward of helping one person at a time can't be taken lightly.  We encourage you to make your voices heard, lend support to others, and do whatever you are able to keep the advocacy fire burning.  Thousands of voices together have significantly more power than each voice alone.

CSSA's website will continue to exist for those who find us.  It has many resources which won't become outdated.  There are also a significant number of links to other sites which have a wealth of current information.  Our partner, The Fibromyalgia Community, has a dynamic website and weekly news update which, although primarily focused on FMS, provide information, research and resources on other 'invisible' illnesses.

I've been encouraged by some changes observed over the last six years.  Awareness of these 'invisible' illnesses has grown, as has legitimacy.  It's been a slow process, but the tortoise wins the race.  Each of us who speaks to others extends that awareness and legitimacy exponentially.  Talk with your friends, challenge those in the medical profession who cling to the notion that 'it's all in our heads', and above all, don't give up hope or the fight.  There have been many before us and there will be those after us let's do our part while it's our time.

Those of us involved with CSSA won't stop fighting we'll simply be doing it in a less visible way.

Our best to you all, and may the force be with you!

 

3.  What's Online At CSSA
 

books

Books, videos and reviews on 'invisible' disorders.  As an Amazon.com affiliate, your purchase will help CSSA and its partners remain online.

Bedroom Talk with Kelly, a great place for information, questions and answers on how to successfully maintain your intimate relationships while living with a chronic illness.

The CSSA Pamphlet which is intended to be distributed or placed in public locations for those who may be unaware of these chronic illnesses or may not have internet access. The pamphlet is available at CSSA's website and may be downloaded with Adobe Reader in its actual format. It can be copied for distribution as long as it remains intact and in its entirety.  Place them in your local area (libraries, doctors' offices, hospitals, pharmacies, churches, etc.) to further spread awareness.

Back issues of The Syndrome Sentinel.  In most respects, the information contained in these issues is timeless, based on the current state of research. The cause(s) of these 'invisible' illnesses is still unknown, and there is still no cure.

Patient Resources, which is set up specifically for patients needs! There you'll find Information about Medications by Devin Starlanyl, info on a site run by doctors with FMS, a downloadable pamphlet from MCS Health & Environment, links to online support groups and a host of other valuable resources.

Articles of Interest on a wide range of topics.

Links to CIND Overlapping Illnesses, Fibromyalgia Syndrome, Chronic Myofascial Pain, Gulf War Syndrome, Multiple Chemical Sensitivities Syndrome/Chemical Illness/Environmental Illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Related Illnesses, Chronic Pain, Complementary/Alternative, Additional Resources, Disability, Spiritual Support websites.

We would like to acknowledge and express our thanks to the people or organizations who have so generously supported our efforts since 1997.
 

please donate

Your donation of any amount will help CSSA and its partners Awareness Efforts.  Click here to make a donation through PayPal.

 

Support the efforts of CSSA and its partners by purchasing your everyday health, personal care and home care products and popular holiday gift items through our WatkinsOnline Store, where you'll find something for everyone!


 

6. Contests


The Essay Contest

We received several good entries for the Essay contest.  Vote for your favorite now!  Send an email to Essay with the entry number of your favorite.  Please vote only once.  ;-D  The winner will be announced on April 10th.

The First Place Winner will receive a $35.00 Watkins Gift Certificate!  Second and Third Place Winners will receive The Fibromyalgia Chef, by Mark Pellegrino, MD, which was graciously donated by Anadem Publishing. 

 



Entry No. 1

What I have learned that helps with motivation and my attitude is to just get started on something no matter how small of a task, whether it is turning a doorknob in severe pain, or making the bed up, or holding a shampoo bottle, or just putting one leg into the car and then the other leg into the car, by just starting the action and then putting my mind somewhere above the pain and exhaustion, for just a moment, until I get through the motions of what I must do in life.

I could not survive if I had not developed this mindset and new attitude by myself, with no pain management training, with no support group, and no emotional support.

There have been times when I wanted to go to sleep and never wake up, due to the exhaustion, the pain from the chronic fatigue immune dysfunction.

I know that we must find a way to survive and this is the way that I do it. 

My hope is that my faith stands strong forever, as it has in the deepest, darkest minutes with this illness, and that I can help other cfids sufferers, in exchanging ideas and helping them to not give up on life.

Sometimes we think we have not positively influenced someone in this life and when we least expect to hear that we have touched someone, we learn that we have helped another human, by giving them courage, love, compassion or medical knowledge about CFIDS.

This attitude of just keeping on with each moment and having hope that I have helped another person to live longer with any support I can give to them, makes life richer for me.

 


Entry No. 2

Taming the Shadow

I did not slide gracefully into ME/CFS. Between one day and the next, I lost everything that I believed defined who I was: job, cycling, travelling, active social life, memory. The first months were bearable, filled with doctors appointments, tests, phone calls, cards and emails from concerned family, friends and workmates. Through fevers, laboured breathing, deadweight fatigue, brain fog and dizziness, I spent my limited energy reassuring others that I was ok, just suffering a temporary setback. It was about nine months into the illness that I realized this wasn't going to go away anytime soon, not by willpower and certainly not by anything that my doctor prescribed.

None of my physical suffering created as much pain for me as guilt. It hung around me like a shadow, eating away at my self-esteem. I felt guilt over deserting my job, that I could no longer share bike rides with my husband or travel to our favourite getaways, that I had to drop nearly all social activities, even phone calls, and the worst - that I had succumbed to an illness surrounded by controversy, with a name that no one could agree on. It was guilt that pushed me to try harder and set inflexible schedules, leading to one relapse after another. After months of this behaviour and no signs of improvement, I was losing hope of ever feeling well again.

While watching a television program on lupus one day, I listened to a patient describe how on her worst days, all she could do is breathe in and breathe out and it helped her get through the pain. After trying so many remedies that either made me sicker or poorer, this gentle approach appealed to me. I would lie on my bed, focusing on my breathing, in and out. My mind would start to race, thinking of all the things in my life I had screwed up by getting sick; I didn't fight it, I just concentrated on my breath. As simple as that. Very slowly, through these moments of calm, I started to come to terms with my life as it was; not a life on hold but a life in progress. This was my reality and I had to accept it if I was going to heal emotionally. I couldn't control what was happening to my physical body, nor was I responsible for anyone else's anger or frustration over my situation.

My physical symptoms haven't improved greatly, but I'm a little more accepting of my body's limits. I still have moments of despair and feel the tug of guilt nibbling away in the background, but it hangs around less and I don't react with the same intensity as before. I'm committed more than ever to being the person I want to be, with or without a disability and most days, I like what I see.


Entry No. 3

Because of brain fog, I was locking my keys inside my car. As the car chimed at me, I'd lock the door and close it. It was only when I returned to the car that I'd see the keys hanging in the ignition. This happened twice within three months. Although I temporarily solved my problem by calling AAA, I was only allowed four free service calls within a 12-month period. Besides, I usually had to wait almost two hours to get into my car after I found a pay phone. Something had to change!

First, I made sure that my clothes had at least two pockets, one on the left side and one on the right. Next, I had two sets of duplicate keys made for my house and car. The set that went into my left pocket became my backup keys. The keys in my right pocket were the ones I usually used. Of course I still had a large group of keys that lived in my fanny pack.

I gradually have added keys to the primary keys in my right pocket. For example, it's more convenient to have my post office box key in my right pocket.

I still lock my keys inside my car, but I haven't had to call the AAA. I've eliminated wasted time, reduced my stress, and increased my safety. Not bad for spending a few dollars for keys.


Entry No. 4

Letting Go of Work

As a successful career woman in the telecommunications industry for over 20 years, one of the most difficult tasks I faced in dealing with CFIDS and my subsequent early retirement was learning to let go of work. Since I have been unable to have children - actually, I postponed this due to my career until it was too late - much of my identity and sense of worth was tied up in what I did for a living. I resisted giving up full-time work, returning after three medical leaves until finally I took a fall while on a business trip, herniating a disk. I was unable to walk for awhile, and during this time, with the support of several good doctors, I decided to apply for Social Security Disability Income, which I was awarded on the first try. I've been officially "retired" since September of 2000; I'm now 43 years old.

I took several steps over my three-year (ongoing) struggle to let go of work. Some things that helped me the most were:

1. Cleaning out my business files and clothes closet (although I kept a few business suits just in case I'm ever able to return to work!);

2. Making a scrapbook in honor of my career, including all my mementos and awards for special accomplishments;

3. Holding a "re-birthday" party when I turned 41 and planned to start part-time work - I asked friends to share their own re-birthing experiences in lieu of gifts, and it was quite moving;

4. Throwing a "retirement party" to celebrate my disability award (although ironically we had to cancel this because I had to have an emergency appendectomy!);

5. Writing about my transition in journals, essays, and poems, several of which I've published;

6. Grieving my losses with my excellent therapist, who I see on a monthly basis;

7. Taking short classes when I am able, in my areas of special interest such as the creative arts, as long as they are low-stress and non-graded (I've done Japanese flower arranging, musical theatre, and creative writing so far); and last but not least,

8. Finding support in areas other than family and work, such as e-groups and local support groups, which help me feel less isolated.

Letting go has gotten easier as time goes by, but it is still hard. I miss working, but I've learned that I have innate value just for who I am rather than what I do for a living.


Essay No. 5

MY LIFE WITH FIBROMYALGIA

Even before being diagnosed with fibromyalgia, I suffered from a lot of pain, discomfort and numbness. I had two major back surgeries to repair degenerative discs--3 upper and 5 lower. One surgery was in January 1999 and the other in July 1999. Then in October 2000 I had carpal tunnel surgery which did not correct the problem. After that I was referred by my orthopedic doctor to a rheumatologist who diagnosed me with fibro. His only answers to me were Elavil and stretching exercises. I was then referred by another fibro sufferer to my physician now. He is wonderful and never stops trying to help. During all of this, my husband was having an affair and left my children and I in September of 2000. This came as a total shock and only added to my stress, depression and thoughts of suicide. We have not divorced mainly because I needed his insurance, and the fact his guilt will not allow him to divorce me. In December of 2001, he lost his job; therefore, I now have no insurance. ! He started a job on February 9, 2002, but the insurance does not take effect for 120 days. In August 2001, my doctor advised me to file for disability. I had worked from the time I was 15 until April of 2000. On January 24, 2002, I received a denial for my disability and now have to appeal that.

Although I still suffer from all the effects of fibro, there are some wonderful things that have happened because of all of my misfortunes. My children and I have always been close, but we have become even closer than I could have ever imagined or hoped for. My children and my best friend, Patti, are my angels here on earth. They give me the encouragement to go on. My daughter and son never seemed to be as close as I would have wanted. My disease has brought them much closer to each other.

I have learned to appreciate what I have much more and have learned to take nothing for granted. My children and I spend quality time together. When I could work, our quality time was very limited. Now, I have much more time for them, and I am enjoying that. With our very limited funds, we have all learned that the luxury items we thought we had to have are now meaningless.

Everyone is now much more willing to lend a hand. The little arguments to get the simple things done around the house are no more. Most of the time, everyone does needed chores without being asked. The caring, sharing and love in our home is wonderful.

When I get confused, forget things (the fibro fog) we laugh together and eventually find a solution to correct my mistakes, find something I have misplaced, etc. We do it together--as a family.

Instead of pondering on the things I can no longer do, I thank God for what I can do and for what I have. On those days that I cannot get up and move around, my children and Patti sit with me. We talk, laugh and learn more about each other all the time.

This disease has made me take a good, hard look at myself and my life--both in the past and the present. I realize my limitations (sure at times I push it too much). I find comfort in knowing that although I may be suffering, I am still alive. My children need me, and I need them. And, together we will get through this. Our love will prevail.



The Puzzle Contest

Only one entry correctly identified all six graphic puzzle pieces and an explanation of what the pieces represent CSSA's logo.   The lucky winner will receive Tired So Tired and the "yeast connection", by William G. Crook, MD. 


Thanks to everyone who participated in the contests!

 

7.  The Fine Print

Health Information Disclaimer

CSSA provides resources for informational purposes. Health information should always be carefully reviewed with your health care provider. CSSA will not be held responsible for misuse of information or any adverse effects of recommendations stated in these resources.

Some resource sites that represent commercial ventures are included because they are also of informational value. CSSA does not recommend the use of any particular company or product.

The views or opinions stated in the resources collected here do not necessarily reflect those of the CSSA or its owner.  CSSA assumes no responsibility for any discrepancies or errors contained in these resources.


Other Legal Stuff

You are receiving this e-newsletter because you have expressed an interest in receiving news updates from CSSA, by specifically signing up for the newsletter from CSSA.

The last communication will be sent on April 10, 2002.

 

 

Support the efforts of CSSA and its partners by purchasing your everyday
health, personal care and home care products and popular holiday gift
items through our WatkinsOnline Store, where you'll find something for
everyone! Make your donations count and enjoy the process! If you
order by telephone, please use CSSA's ID #328108.

 


 

Copyright 2001 The Chronic Syndrome Support Assn., Inc. All rights reserved.
All trademarks are the property of their respective owners.