Talk Cancer

Question:

Well I have been silent for a very long time but since I am now able to contact my son who is in the military with my new screen name I can put an end to the disgusting use that this area has been utilized for.  "JAIME"  you have been clever enough not to include any of your venemous messages on the AOL Bulletin Board.  AOL has been able to identify you but cannot do anything at this point due to your statements being in uncontrolled areas.  I am not who you think I am and this area has been reduced once again to maybe three people e-mailing each other discussing issues that have long since been eliminated. Unfortunately the treatment of scleroderma is nowhere closer to a cure then it was fifty years ago.  Some medications can make us more comfortable but that is all.  The medical community including the News Letter from the newly merged organization even admits to this.  The attacks on anyone who submit a view that does not go along with Sherry Messick or Amie’s is  not accepted.  So you can have this site to waste and as is already quite obvious there are no new patients even submitting questions.  This illness has taken more then your bodies.  If all you have to do in life is e-mail all day long go for it.  I have been able to block you permanently and AOL will eventually catch you in a slip up .  I will continue along with others to report your harrassment and if that is all you have in life enjoy.  As for the antibiotic therapy is that all that you have to discuss????????  I guess so.  The medical community is in the midst of now attempting to save the lives of the people who have almost died from not receiving proper care to slow progression.  This is stated in some very important articles written by the foremost specialists.  For those it appeared to help you are in denial and scleroderma has a natural way of plateauing and then burning out in many diffuse cases.  So please to all who are changing treatments and doctors because of all this "cult" like nonsense. Get to a well known specialist and get the proper medical care.  As stated by "Ed"  if there is no mycoplasma present the treatment is not truly indicated. The tests were rediculous and D-penn which has halted progression and is still believed to do so by the leading specialists has been halted by many patients and these will be the ones to develope late internal involvement.  Check for yourselves.   I NOW RETURN THIS AREA TO THE THREE WHO HAVE MADE ILLNESS NOT A PROBLEM BUT A LIFESTYLE.     LIZA

Response:

> >IT IS JUST A MATTER OF TIME BEFORE YOU ATTACK THE ROAD > > BACK FOUNDATION AND YOUR "RESPECT" FOR MERRI GOES DOWN THE TUBES. > Who’s Merri?

She was referring to my discussion on antibiotics with SocJog. SocJog’s real name is Merri. — Love and Hugs to all Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com Living with Lupus & Fighting with fibromyalgia http://ps.superb.net/smessick/survive "We are all Beacons Of Light for Each Other " Oprah Winfrey

Response:

> I NOW RETURN THIS AREA TO THE THREE WHO HAVE MADE ILLNESS NOT A >PROBLEM BUT A LIFESTYLE.

Because several people post regularly doesn’t mean that their illness is their lifestyle. I think this shows that their lifestyle have become a way of supporting others any way they can. They care enough to make a regular and supportive contribution. They also use this time to vent or share so they can cope personally. Perhaps they have access to information that others wish and would benefit from reading. If this has become my lifestyle well I am very proud of that fact because I have learned so much while living this lifestyle and it has made me a more loving and caring person. This lifestyle if that is what I am living is the best thing that could have ever happened to me. Not only have I made many friends I have learned many coping mechanisms and I deal with my disease (or problem as you referred to it) with renewed hope and inspiration. > The attacks on anyone who submit a view that > does not go along with Sherry Messick or Amie’s is  not accepted.

I am sorry you gather that assumption since it is evident that Merri and I do not agree on several things but I didn’t see anyone speak against her for not "going along with me" Amie and I do not set the standards here. We participate often because we feel we have something to say. Anyone can have that same feeling and participate if they wish. Life would be very boring if everyone agreed with me so I don’t want that. — Love and Hugs to all Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com Living with Lupus & Fighting with fibromyalgia http://ps.superb.net/smessick/survive "We are all Beacons Of Light for Each Other " Oprah Winfrey

Response:

> It boggles the mind why anyone would hang around a website that she/he does not > like and finds fault with.   > It’s like watching a TV program day after day and complaining about it and not > changing the channel.  I guess some people just like to gripe and complain > instead of moving on or changing the channel. > There is more out there Liza.  Or are you one who will watch the same thing day > in day out and you don’t like the program ???  

Right on Wendy and especially when the complaints only seem to come when the newsgroup is flourishing. It is almost like she can’t stand to see it do well so she comes here to sabatage. I just don’t get it either. — Love and Hugs to all Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com Living with Lupus & Fighting with fibromyalgia http://ps.superb.net/smessick/survive "We are all Beacons Of Light for Each Other " Oprah Winfrey

Response:

- Hide quoted text — Show quoted text ->>Because several people post regularly doesn’t mean that their illness is >>their lifestyle. >THERE IS A FLOW IN THIS AREA THAT  IS PROOF THAT YOU SHERRY AND ANOTHER SPEND >ALL DAY ONLINE.  WHAT ABOUT YOUR FAMILIES.  SHARING AND HELPING IS ONE THING >BUT  ALL DAY EVERYDAY  COME NOW.  PLUS YOU HAVE NOT ADDED ANYTHING NEW IN >OVER >TWO YEARS.  NOT YOUR FAULT BUT THERE IS NOTHING NEW AND THE MEDICAL INFO YOU >PRESENT IS A DANGER AS IT IS NOT BASED ON ANY MEDICAL ARTICLES OR DATA.  SO >WHAT IS THE POINT?  AND NO I AM NOT MIA ETC.  BUT I HAVE CHECKED DEJA NEWS >AND >DO AGREE WITH ALOT SHE HAS SAID.  IT IS  OBVIOUS THAT YOU ARE THREATENED BY >HER >KNOWLEDGE AND OPINIONS.  IT IS JUST A MATTER OF TIME BEFORE YOU ATTACK THE >ROAD >BACK FOUNDATION AND YOUR "RESPECT" FOR MERRI GOES DOWN THE TUBES.  SO GET >OFFLINE FOR AWHILE AND ALLOW SOME OTHER PATIENTS TO EXPRESS THEMSELVES.  MANY >HAVE LEFT AND SOUGHT SUPPORT ON THE ARTHRITIS NG AND THE FIBRO NG DUE TO THE >ATTACKS THAT ARISE IN THE SCLERODERMA SITES.  BTW  ISN’T IT TIME FOR YOU TO >CLARIFY YOUR CONDITION.  NEW PATIENTS ARE TERRIFIED WHEN ALL THEY HEAR FROM >YOU >IS "CHEMO"  IT IS A RARE SCLERODERMA PATIENT THAT EVER REQUIRES THIS EXTREME >A >TREATMENT.  SO PLEASE BEFORE SOMEONE IS HURT STOP WITH ALL MEDICAL >INFORMATION >UNLESS YOU CAN THOROUGHLY BACK  UP WITH SOME MEDICAL REPORTS THAT WE ALL CAN >ACCESS. >LIZA

Liza, Why do you care if things are repeated? Yawn… Just go to another SD group on the internet where you will be happy. It boggles the mind why anyone would hang around a website that she/he does not like and finds fault with.   It’s like watching a TV program day after day and complaining about it and not changing the channel.  I guess some people just like to gripe and complain instead of moving on or changing the channel. There is more out there Liza.  Or are you one who will watch the same thing day in day out and you don’t like the program ???   Just boggles the mind it does.   And, by the way, just exactly why do you care who stays on line all day?  Trust me ,YOU ARE NOT MY KEEPER (thank God).  You should tend to your own family and not be so concerned about those who do or do not spend time on the computer. Wendy

Response:

In a response message Jaimes responded to a poster regarding the below statement. > >The medical community is in the > > midst of now attempting to save the lives of the people who have almost died > > from not receiving proper care to slow progression.  This is stated in some > > very important articles written by the foremost specialists. > Article names? Dates? Authors? Where published?

Jaimes I must admit she is right on this one. The problem we have is there are not enough specialist that are trained in this field.  Where I live there is no doctor who is trained to handle SD.  I have yet to run into any Doctor, therapist or any medical profession where I did not have to educate them on what SD was.  That is really sad.  Everytime I go to the doctor I have to double check what he does or says to make sure it will not do more damage than good.  I am hoping that the new doctor at our clinic is better than what I have had, he is from Salt Lake City so there is hope. As to the comments on Minocycline,  as patients we are eager to learn of any new treatments or cures.  I can see getting to a point in the disease that you grab onto anything.  When I worked as a product information manager I had many calls from people who had gone the entire medical route for treatment of cancer who begged me to give them something from the alternative medicine area.  The hardest calls were from the parents whose children were dying.  I don’t know if the herbs and vitamins worked or not.  But the major thing was they were fighting back.  I have always had a saying that I live by "As long as there is life, there is hope".  I am still alive and I am still hoping.  Please do not condemn anyone for fighting back, it is the best medicine they can take. — Best to All Jan http://www.geocities.com/HotSprings/Villa/3892/index.html ICQ# 9123986 —–== Posted via Deja News, The Leader in Internet Discussion ==—– http://www.dejanews.com/rg_mkgrp.xp   Create Your Own Free Member Forum

Response:

>Because several people post regularly doesn’t mean that their illness is >their lifestyle.

THERE IS A FLOW IN THIS AREA THAT  IS PROOF THAT YOU SHERRY AND ANOTHER SPEND ALL DAY ONLINE.  WHAT ABOUT YOUR FAMILIES.  SHARING AND HELPING IS ONE THING BUT  ALL DAY EVERYDAY  COME NOW.  PLUS YOU HAVE NOT ADDED ANYTHING NEW IN OVER TWO YEARS.  NOT YOUR FAULT BUT THERE IS NOTHING NEW AND THE MEDICAL INFO YOU PRESENT IS A DANGER AS IT IS NOT BASED ON ANY MEDICAL ARTICLES OR DATA.  SO WHAT IS THE POINT?  AND NO I AM NOT MIA ETC.  BUT I HAVE CHECKED DEJA NEWS AND DO AGREE WITH ALOT SHE HAS SAID.  IT IS  OBVIOUS THAT YOU ARE THREATENED BY HER KNOWLEDGE AND OPINIONS.  IT IS JUST A MATTER OF TIME BEFORE YOU ATTACK THE ROAD BACK FOUNDATION AND YOUR "RESPECT" FOR MERRI GOES DOWN THE TUBES.  SO GET OFFLINE FOR AWHILE AND ALLOW SOME OTHER PATIENTS TO EXPRESS THEMSELVES.  MANY HAVE LEFT AND SOUGHT SUPPORT ON THE ARTHRITIS NG AND THE FIBRO NG DUE TO THE ATTACKS THAT ARISE IN THE SCLERODERMA SITES.  BTW  ISN’T IT TIME FOR YOU TO CLARIFY YOUR CONDITION.  NEW PATIENTS ARE TERRIFIED WHEN ALL THEY HEAR FROM YOU IS "CHEMO"  IT IS A RARE SCLERODERMA PATIENT THAT EVER REQUIRES THIS EXTREME A TREATMENT.  SO PLEASE BEFORE SOMEONE IS HURT STOP WITH ALL MEDICAL INFORMATION UNLESS YOU CAN THOROUGHLY BACK  UP WITH SOME MEDICAL REPORTS THAT WE ALL CAN ACCESS. LIZA

Response:

>I can put an end to the >disgusting use that this area has been utilized >for.

Thank you for coming to our rescue! Peleeeeze The only disgusting items that have been placed here were put here by you. >I am not who you think I am

Oh I think if we read in the FMS group we can put two and two together quite nicely, thank you very much. How can you as Liza, Mia, MS, Sharyn and all the other aliases 1. Live in the same exact city, all the way down to street and phone number? 2. Have a son that not only has the same name but also is in the Navy serving on the same ship in the same area? 3. Have the same age daughter with the same name? 4. Have the same  grandchild with the same name?. 5. Have the same daughter in law with the same name? 6. Have the same exact diagnosis all the way down to symptoms? 7.Have a husband with the same name?8. Have a husband that works in the same type of business? 9. Make the same exact statements and mispell the same words repeatedly? and last but not least 9. Have the same negative and hateful personality? I believe in coincidences but lets get real here. This is no coincidence. >I NOW RETURN THIS AREA TO THE >THREE WHO HAVE MADE ILLNESS >NOT A PROBLEM BUT A >LIFESTYLE.

Thank you now maybe peace will prevail once again. Oh one more question. Does this goodbye also apply to your other aliases? I hope so because I don’t want to get my hopes up for nothing. Good day and great happiness to everyone. Daizy O

Response: