Listening to CFIDS: Guest Comments/1

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Sue, How wonderful of you to make the digital postcard available to to everyone. I've enjoyed receiving each one and have now sent them to all my PWC family in "WECAN". Your site is excellent and we all are most grateful to you and all the other dear souls who endeavored to bring it to us. God Bless us all and Happy Holidays to everyone. Love and gentle hugs, Sandy
Sandra Ponce <SandraPonce@worldnet.att.net>
St. Augustine, Fl USA - Content-type: text/plain Sun Dec 15 12:13:08 EST 1996

What a great service to us PWC's. Thank you!!!! I would like to order wallet cards. Can you tell me how to do so? Thanks
Farraday <farraday@ix.netcom.com>
USA - Content-type: text/plain Wed Nov 20 01:03:19 EST 1996

It is noon and if I am very lucky I may be able to get up the energy to get dressed soon. I have had CFIDS for over ten years. Also FM with it.The pain I endure is constant. Just once I would like to be able to sleep anentire night through and wake up and feel like I have gotten some sleep. Every once in awile I have a day without pain and it is such a blessing! This disease is so much more than fatique. It gets tiring hearing people say "oh yes, I get tired too. I must have it." If they only realized the suffering. I am not as bad as some and feel ill most of the time. I am very fortunate to have supportive family. I also am able to work part-time out of my home and can still take short walks for exercise on good days. I feel blessed despite this insidious illness.
Lynn
PA USA - Content-type: text/plain Fri Nov 15 11:40:27 EST 1996

Have had cfids since 1992 and have been struggeling along since then what a bummer but you live day to day stress is a killer would love to hear back from others
Joe Sustek PWC <jsustek@citrus.infi.net>
Floral City, Fl USA - Content-type: text/plain Mon Nov 11 07:14:31 EST 1996

Thanks so much for this page, I feel like I am not alone and crazy. My heart felt blessings to all who feel like I do everyday. I am more sick and tired of people commenting rudely than I am of CIFDS. sincerly Sheila Kivi
Sheila Kivi <fssrk3@aurora>
North Pole, AK USA - Content-type: text/plain Mon Oct 28 23:01:47 EST 1996

On a better day there will be more words from me, but all the same it is good to have been here.
jennifer <jennifer@sentient.co.uk>
UK - Content-type: text/plain Mon Oct 28 11:03:20 EST 1996

Hi. I'm a 27 year old female just diagnosed with CFIDS/ME. Just read everything on this page. You all make me feel like I am NOT alone in this fight. My life feels as if it's changing without my control. Anyone else in Kentucky?????
Kymber <tfi@cris.com>
Lexington, KY USA - Content-type: text/plain Wed Oct 23 11:21:30 EDT 1996

Eva, thank you so very much for your articles, I can relate to them at least 90% and am grateful to you for that reason. I am 48yrs old, photographer(not recently), have published articles, play nonsense games and so on. I have not been diagnosed yet but at least I now know that I'm not unique. It's unbelieveable how similar we are. Have been down with this dd since jan '96, but reading and listening realize that it probably started much earlier. Again thank you and would like to help in any capacity possible. Hugs and sunshine on your shoulders always. Sandy
Sandy Burnett <sburnett@flash.net>
Kaufman, TX USA - Content-type: text/plain Mon Oct 14 19:29:29 EDT 1996

Check out the CFIDS in ALASKA article at: http://www.alaskana.com/press
Kathleen Houghton <gandk@alaska.net>
Anchorage, AK USA - Content-type: text/plain Mon Oct 14 13:40:47 EDT 1996

URGENT NEED FOR CLASS ACTION CONTACTS.Need to hear from Persons w/CFIDS,MCS &/or FMS who have experienced problems w/ disability or health coverage from AETNA &/or CIGNA insurance companies. I have the support of my doctors & believe that if we join together in Class Action suit, we can make a difference. Please send contact info, brief description to E.Haynes, P.O.B. 2305, Durham,NC 27705 or E-Mail BSmith505@aol.com
E.Haynes <BSmith505@aol.com>
Durham, NC USA - Content-type: text/plain Fri Sep 27 12:20:57 EDT 1996

Add my thanks for this great site, Sue. I recognize a few names here from the CFS-L that I subscribe to. It's so great to find others in our situation. I'd love to contribute to "Voices", and look forward to upcoming information and friendly visits! 80)
Nadine Goranson <ntg@indra.com>
Longmont, CO USA - Content-type: text/plain Wed Sep 25 04:52:08 EDT 1996

This page is a great resource. I have a very close friend that has CFIDS and I'm trying my best, as a PWH (person with health) to spread the word on how devastating this can be. I will recommend this website to my other friends who are trying to figure out what they can do, too. Thanks! :-)
Erin Wilson <MissEwon@aol.com>
San Diego, CA USA - Content-type: text/plain Tue Sep 17 04:13:49 EDT 1996

I am a PWC also have FMS. I am an RN & have been disabled with CFIDS since 8/92. This is the first time I have visit
Barbara Seay <SEABARBC@aol.com>
USA - Content-type: text/plain Wed Sep 11 22:15:09 EDT 1996

I was diagnosed with CFS in 89', but I'm sure I had it about three years before that. I have read every book and every piece of information I could get my hands on, on the subject of CFS. Just the other day one of my co-workers said "Oh yes, I've heard of CFS, it's a kind of depression.". I said "no.". Then he says "You get tierd all the time.". I said "sort of". I found that it is easier to have some litature handy to hand them so that they may understand a little better. This disease is so sorely understood, it is easy to fall into a depression. You must keep pushing, keep fighting the good fight. I am still working and my employer does know about my illness. They have been very understanding so far, and I thank God everyday for that. But I have to miss so many days, I am very paranoid about being fierd and then having to try and fight for disability. I don't have the energy for that. One more thing I thank God for everyday is my husband. To me he is the most wonderful and understanding person in the world. It makes it alot easier to have someone close to you who understands and believes you! Times were rough for us at first, but then we became adjusted to a different lifestyle. He partly understands because when he was growing up dyslexia was poorly understood and he suffered the downfall of that disease. I have yet to overcome the guily feelings of holding him back, but I try to let him do his own thing once in a while, that way I can rest! Please feel free to E-Mail me, I have made one very good friend w/CFS at AOL and she has been an inspiration. Keep looking toward tomorrow no matter what the doctor predicts.
Kim Hairrell-Coo <mpcoo@aol.com>
Houston, Tx USA - Content-type: text/plain Tue Sep 10 14:03:25 EDT 1996

I don't know if I have CFS or not, but here's my story: In past years, I have often put in 80-hour weeks as an engineering consultant, getting things working for my clients. I also enjoyed going to "dawn dances", contra- dancing all night (i.e., I had lots of energy). Last fall, after telling a client I would have a proposal ready by Wednesday (it was a Monday), I felt ill and decided to take a nap. I woke up on Thursday, groggy and wondering what happenned! I was vaguely aware of it having been rainy that week, but not much else. I called the client to say I was sick and fell back asleep. When I woke up Friday, I felt a pain in my leg and thought I must've bumped it on the corner of the bed. I suddenly had a very intense craving for bananas! I got up, undressed, and into the shower and suddenly noticed my leg was *decayed*, almost looking like a third degree burn! After I got dressed, I went to the hospital (stopping at the supermarket to get bananas!). The folks at the hospital immediately put me on a stretcher and hooked up iv bags of potassium (hence the banana craving?), glucose, and antibiotics and saline solution. I was in the hospital for the next four days, unable to get up. (Apparently, I had the infamous "flesh-eating bacteria" in my leg!) After I got better, I tried to get back to work. But, when I went to meet with the client, I started babbling incoherently and totally forgot the subject matter that I was supposed to be the expert on! (Fortunately, the client knew me from before I got sick; I still lost the contract though, because they needed the work done immediately, and I wasn't able to do it.) I since got better (now I can think just fine), but I still tire easily. In April, my leg started swelling up again, and I was put on the same antibiotics again (Cephalexin). When I finished the round of antibiotics, I started having heart palpatations and vomiting a lot, but those symptoms then went away. At the end of June, I had a chance to do another project with the aforementioned client, that had to be done in one week. I had most of it done, when I started to get a lot of infections. I "spaced-out" again and suddenly found it was 10 days later! (I once again missed a deadline!) I am feeling better now, but I still don't have the energy I used to. Could I have CFS as a side effect of whatever caused that leg infection? What caught my eye regarding CFS is a web page that said CFS is often caused by the immune system overreacting after fighting a major infection. This could be true in my case. If someone has some insight on this, feel free to email me.
Thomas Giventer <giventer@lightlink.com>
Ithaca, NY USA - Content-type: text/plain Tue Sep 10 01:15:21 EDT 1996

I am a PWC also have FMS. I am an RN & have been disabled with CFIDS since 8/92. This is the first time I have visited this site and I am happy to see that there is a site for CFIDS & PWC's! I hope that very soon we will at least get the recognition from the medical community, government, media and general public that we have been denied for over a decade. And I pray that they will find the cause and a cure for this devastating disease. It has destroyed too many lives and continues to do so. Thank you, Barbara
Barbara Seay <SEABARBC@aol.com>
USA - Content-type: text/plain Fri Aug 30 14:19:22 EDT 1996

Even though CFIDS is a SON OF A **#@@ it does occationally have it amusing moments. Like the other day I went to spray some bug spray on a single roach who had invaded my apartment. To my amusement after spraying him I noted the roach's hair appeared to be now held in place. Because I had sprayed him with hair spray by mistake. So now this roach has natural-looking and easy to manage hair with hold that lasts. As a wise person once said "isn't that a hoot." Let me know if anyone else has funny stories we can all laugh about related to our mutual hobby called CFIDS. Finally to all chartered CFIDS club members lets not forget to show all the new CFIDS participants our secret hand-shake and give them our club's secret password.
Jim <gman@flinthills.com>
KS USA - Content-type: text/plain Thu Aug 29 02:05:53 EDT 1996

I have just completed a wonderful article written about CFIDS that the local daily newspaper is going to print this week.(8-28) If anyone is interested in a copy for editing to your area please e-mail me and send your fax number. I will fax it to you ASAP. Most sincerely, Kathleen Houghton CFIDS Network of Alaska gandk@alaska.net
Kathleen Houghton <gandk@alaska.net>
USA - Content-type: text/plain Sun Aug 25 21:00:47 EDT 1996

I just finished reading Eva Shaderowfsky's stories. I cried as I read them because I could have written them. I have been suffering with CFIDS for some time now. I would like Eva to know that the work she is doing is very important and that I will listen.
Tracy Foltz <tracy@net-gate.com>
Mantua, NJ USA -

Thanks for putting together a gathering place for us lost souls. PatB SL for Compuserve's CIFORUM, support area for PWCs
PatB <patpm@erols.com>
Rockville, md USA -

When in what you think is remission & stress hits--does this ever go away or is it that you are managing it until stress hits hard?
JustBluJan <JustBluJan@aol.com>
USA -

hello, I don't live in the USA, but overhere we have the same difficulties, I don't understand what's wrong with me, why can't I do the things I used to. So how can I make others understand what's wrong with me ?? I've disabilities since 1989, get tired real soon, sleep a lot and still not feeling well. I've problems with almost everything I do, WHY ??? In the Netherlands we suppose to have good social securitys, but not for people with CFIDS. Any-one can say they've CFIDS, so the government doesn't accept this illness yet. Just keep on going to seek publicity, maybe one day they'll find the solution for us. greetings, Truus Zomer, The Netherlands
Truus Zomer <H.ZOMER@GWW.NL>
EERBEEK, THE NETHERLANDS -

Thank you Sue, and to all who have shared their stories! :) Only when alot of noise is made will the "authorities" listen and do something positive about cfids.God bless those who suffer from this hellacious illness, the caregivers who provide their undying love even in the worst of times, and our healthy friends who take action on our behalf! With healing white light, Heidi Anne
Heidi Anne <clduerr@deltanet.com>
Huntington Beach, CA USA -

It's about time people started putting the reality of CFS/ME there! My thoughts about CFS: I want to go to bed and wake up to find a whole different world. I don't want to tilt at windmills; I want to build them. I don't want to hide from the sun; I want to worship it. I don't want to live in this coffin, "little box with the top nailed down"; I want to sleep under the stars and run through fields. This is not the life I choose. This is a sick, sick joke and I see no humor in it--this is CFS/ME. Now, we are getting together to get the message across. YES! I applaud you.
Paula Frighetti <willow@azstarnet.com>
Tucson, AZ USA -

Brava, Sue! I've been struggling with this monster called CFIDS for five years now, and even though I have been lucky and am not as impaired as most who get hit with this, I know that I am perhaps 80% of where I was before I got sick on a good day. There are too many people who shrug this off...chuckle under their breath about "Yuppie Flu"...so the message of the reality of this disease needs to get out. I'm not freakin' malingering! I'm not just tired! I'm not doing this to get attention! Or as someone I met on FidoNet once put it: "I don't look sick, and you don't look stupid." Pardon my rant, but obviously this means a lot to me.
Michelle Klein-Hass <mhass703@loop.com>
Van Nuys, CA USA -

Sue, this is a fantastic site. Brava, Brava. And applause to the creative PWCs who have made contributions. I'll be here soon ... Mary
Mary Schweitzer <Schweit2@ix.netcom.com>
Wilmington, DE USA -

Thanks, Sue, for all your help! We PWCs have good ideas sometimes, but we lack the energy to implement them. It's good to have good friends like you! 8-) Mary Dee Harris, host, AOL CFIDS Support Group
Mary Dee Harris <mdharris@aol.com>
Washington, DC USA -

Welcome, everybody!! I'm glad you visited our site. Please come back soon, because we'll be adding new material as we go. And do add a comment here--add your voice!
Sue, the Editor <SueBD@aol.com>
USA -

[ Table of Contents | Action Page | Finding Support Online | Message Boards ]

Add your supportive, encouraging, affirming comments, to our Message Boards!

Add your supportive, encouraging,
affirming comments, to our Message Boards!