WE'RE ON A ROLL!!!
(Note: Geocities will be experiencing "down time" from late Friday, May 17th thru early Sunday, May 19th. During that time, this site will not be available for viewing. Please check back Monday.)
I had told you a most of what happens with Sandra and CCNL and this week I want to tell you a little bit about the others and some of what they do to make the chat and messageboard happen and some of the other processes.
Jean (AKA Young Johnny) has the responsibilites, and I want to make this very clear that she does NOT have crohns but does it because she has compassion for us after seeing all that I had gone thru for 9 years, of helping me keep the message board clear of past birthdays, posting medical information either by request from me in the MAIN forum, or in the medical forum if it is not of immediate interest. She also maintains the original cheat sheet, which she does not send out or respond to requests to send out. In my absence, she will send out the invitations to the chats (which I hear are better than mine ;) so that everyone who does not go to the board, hears about the chats in an email. She was one of the founding members of the group and has helped support and continues to give great ideas on chats, people and advice. Jean also edits and posts the chat logs. This group could not function without her.
Robin - (AKA Robin :) came into the chatroom one night while surfing the net and has given us the messageboard, and the webpage where tons of information is kept and added periodically. Without her logging the chats that we have I would be back to handwriting notes and sending them out the next day. Robin has saved me tons of time so I can work on your requests to get information to you. For her tireless efforts we will have information continually at our fingertips.
Tom - (AKA Tomas and a number of other namees) also a founding member, who continually writes to CCFA to update their links and to include ours, has gotten us on various different sites so that others may find us. Does research on other boards so that we may include their issues in our chat discussions, works with people's requests for information, keeps me up to date on various people so that we can support them if need be. He posts all our chat notices on all the boards; in his absence Jean also does this. He helps steer, as does Sandra, Jean and myself the group direction so that we can meet as many needs as possible. He also researches articles for posting on the more technical of terms for the messageboard. He is an invaluable asset to this group.
Carol - (AKA VIBC) she recently joined our grroup by creating and sending to each selected Chatter of the Month, a wonderful certificate fit to hang on your wall or bathroom depending on where you spend most of your time. We welcome her and are very sorry that now that she is part of the process she is no longer eligible for CCOM.
Sandra,
Tom and myself are the selection committee for ChronniesChatter of the Month,
with Jean sometimes making suggestions. Sometimes this is my decision, and
sometimes a group decision. This month making all of you CCOM was my
decision.
I
moderate the chats when I am not sick, or have a limb broken ;), I send out the
chat notices, answer and support inquiries on the board, help get chronnies
together that have the same needs and I don't have the answers, correspond with
about 80 people per week, send out to the rest of the group which now numbers
201, who do not come to the chats or email us or post on the board - a note
asking how they are, if there is something that we can do for them or if they
need something that is not being addressed. For everyone who has moderated
a chat, or taken someone under his or her wing, I thank you. I could not
do this without the chatters. I send Sandra notices of who needs what
card, which she sends out in ChronnieChat's name and that means all 203 of us.
I also send out personal cards when the person does not want anyone else to
know. I delete items from the message board that have been answered, send
out bio's to all of the chatters, forward the mail to people who have just have
bio's sent out, arrange the polls which are moved after one week, two if they
are active to the polling place. I help people find things on the message
board and direct them to where they can find past information in the chat log.
I send out letters sometimes weekly on things of interest to you. I also
ask people to send things about themselves to be included in the newsletter for
our "catching up with" and Sandra has now trusted me to cut and paste
everything (well almost) into CCNL now so that is why the newsletter might be
late sometimes.
I know I am leaving people and what they do out, but we will acknowledge you. We do this together and run like a squeaky machine, trying our best to get information to you along with unconditional support, respect in the chatroom, fun chats, important topics and things you need or want to hear about. Many, Many thanks to our contributing authors!
I also want to mention we also are still welcoming crohns tips - and please read out tips on our newsletter site, at http://www.geocities.com/chronnieschatter/crohns_tips.htm.
Since it has been a year since the inception of CCNL - past newsletters are dropping off, so if you get the chance go see what we have done in the past and how far we have come. – Debbie
Razzle and endometriosis - Part 2 –
(Read part 1 in our 15 April issue: http://www.geocities.com/chronnieschatter/april15.htm )
What Treatment Options are Available?
Hormone therapy, pain relief, and surgery are the most common treatments. Alternative techniques may also help some women. No one treatment proves more effective than another for every case of Endometriosis. Drug therapies including the pain relievers such as Ibuprophen, Naproxen or Acetaminophen may reduce the severity of the pain and may be the only treatment needed in mild cases. Prescription hormone therapies include oral contraceptives, testosterone derivatives, and GnRH Agonists (inhibits the pituitary hormone involved in the stimulation of estrogen). Surgery to remove the uterine cells from the abdomen or other locations may result in relief for some women, but many of these cases of ‘remission’ are only temporary. Alternative approaches include dietary changes, stress reduction (yoga, meditation, exercise, massage therapy, etc.), acupuncture, acupressure, natural progesterone cream, supplements (soy, vitamins, etc.), and Chinese herbs.
Can Endometriosis be Cured?
There is currently no known cure for Endometriosis, although many women find dramatic improvement in their symptoms after surgical or certain hormonal treatments. Others find tremendous help from dietary or other lifestyle modifications, or from other non-traditional health care therapies.
What are the Long-Term Effects of Endometriosis?
Endometriosis may seem to get worse with time, but is not known to cause cancer or be fatal. Some treatments may involve severe side effects, some of which are irreversible. Therefore, it is critical to have a good treatment plan (that has been created under the guidance of your doctor) in place as soon as possible after diagnosis.
Is there any Connection between Endometriosis and other autoimmune diseases (such as Crohn's Disease, Lupus, etc.)?
There appears to be an increased incidence of Endometriosis in those with other autoimmune diseases (such as Crohn's, Lupus, etc.), however the specific connection has not yet been discovered.
Where Can I Find More Information?
Facts About Endometriosis - A good fact-sheet from the National Institutes of Child Health and Human Development, a branch of the National Institutes of Health.
Endometriosis.doc - An excellent overview of Endometriosiis.
Endometriosis.org - Provides information and support for those with Endometriosis.
The Endometriosis Association - Gives an overview of symptoms and treatment options.
Endometriosis Research Center - Overview of Endometriosis, including a more detailed symptom list.
Center For Endometriosis Care - Lots of information about Endometriosis.
Easing Endometriosis - An article about Endometriosis from MSNBC.
Jennifer's Endometriosis Facts Page - A good overview of Endometriosis.
Anti-TNF drug helps Endometriosis - An interesting article on what could potentially be a non-hormone treatment for Endometriosis.
Dr. Christiane Northrup - A well known Gynecologist and author, who has some good advice in her books for women diagnosed with Endometriosis.
Endometriosis - Dr. Andrew Weil's thoughtful answer tto one person's question.
Endometriosis 2 - Dr. Andrew Weil's answer to another person's question.
Adenomyosis - Good information from the Center for Endometriosis Care.
Adenomyosis disease profile - Information from Women's Diagnostic Cyber.
Presurgical Diagnosis of Diffuse Adenomyosis - Excellent article from obgyn.net's EAGO Newsletter.
Jennifer's Adenomyosis Page - A good overview of information about Adenomyosis.
Support Groups:
Endoviduality - A new Endometriosis support organizattion.
ERC ListServ - Operated by the Endometriosis Research Center.
Adenomyosis - A small but nurturing Adenomyosis suppport group.
Catching up with:
Ellie AKA fishnut01
As you already know, my name is Ellie and I have an ileostomy due to Ulcerative Colitis. At least I hope it was UC and not CD. When I was discharged from the hospital they tried to tag me with the CD diagnosis, but I made them change it back to UC as no one told me I actually had CD. I was scheduled for a reversal but I had severe complications with the rectum and I had the rectum removed instead.
I
feel much better since the surgeries, however I am having a terrible time with
steroid withdrawal. I still take prednisone and because of that, I'm also
diabetic and have high blood pressure that is treated with Accupril.
Arthritis is a major factor in my life now due to this disease and the long-term
use of Prednisone. I have not been able to stop taking prednisone for
about 12 to 15 years. The Endocrinologist has told me that I will need to
take it forever! I carry a syringe and a vial of Hydrocortisone to be
administered in the event of any serious stress to my body such as an accident
or "breaking a leg" for example! The instructions are on my Medi-Alert
bracelet.
I
have been taking Vioxx and it really seems to be helping with the joint pains
however my blood pressure has jumped up and I have heard about the Vioxx warning
on TV, so I'm going to stop taking it! I also have a thyroid problem with
nontoxic multi nodular growths and I take Synthroid to shut down thyroid
production so that the nodules will not have anything to give them nourishment
and they stay suppressed. Lately I have had some additional stressful
events that have occurred and since my immune system is so suppressed at the
moment I am taking Neurontin to quell the pain from degenerative disc disease in
both my neck and lower back. I am also taking a muscle relaxant (Skelaxin)
to relieve the spasms that cause my hands and arm's to "lock up"
during sleep. Sometimes I take a sleeping pill when these other meds don't
work and thing's get really bad.
I love to play golf and lately I have not been able to do so because of my various problems. I continue to try and find that one day on the golf course brings two days of doing nothing because of joint pain. I love to go fishing and here on the eastern end of Long Island we do a lot of it. Again, one day of fishing brings two days of pain. But, I refuse to give up either the fishing or the golf. I worked hard for 32 years and I'm determined to enjoy retirement, even if it kills me!
Florida was terrific and we did buy a condo in Ft Myers. Nothing very fancy, but it's on a golf course and we get to play because we are owners! While down in Florida I witnessed a crime in action (robbery) and I had to ID the crooks down a dark road late at night. Boy was I scared! My husband was back in NY at the time. I spent the rest of the time there afraid that the crooks were coming back to "get me" as they knew where I lived. The next day a friend and I were "flashed" by a nut! We thought he was just going to take a pee, but he was really flashing us!!!! Then, after my husband returned, another nut case got nasty with my husband and I over a parking spot. He used the "F" word so many times in one paragraph my head was spinning! He threatened us so we had to call the cop's on him!!! All this was happening while I tried to buy and close on a condo in 2 weeks time!!! Lot's of stress and then the ride home for three days. By the time I got back home to New York I was ready for the "nut house" myself.
That's what's new in my life!!! I actually feel lucky as thing's could be so much worse. We have all learned so much from the stress, the pain and the adversity that this disease has caused each one of us. We are stronger and more empowered. I know I appreciate all the little thing's in life so much more, especially the friends like you that care so much to help anyone who need's a helping hand. My life has changed forever due to this disease and I think many times that it is changed for all the right reasons!
Please remember September 11th and may God Bless America and all of my CD buddies.
Tom's Recommended Links:
If it's about history, or HAS a history, it's at this site!!!
http://history.evansville.net/hist_of.html
Here's a site I LOVE, especially after going through my divorce this year. It's the International Society for the Promotion of Cruelty to Attorneys :
Check out the secret messages in a $20.00 bill. It's pretty cool, but since I'm so poor this month I don't have a $20 bill to try it!!
http://www.linkydinky.com/20billsecrets.shtml
Some Humor!
This one's from Sheila aka sheinfla
A man suffered a serious heart attack and had open heart bypass surgery. He awakened from the surgery to find himself in the care of nuns at a Catholic hospital. As he was recovering, a nun asked him questions regarding how he was going to pay for services. He was asked if he had health insurance. He replied in a raspy voice, "No health insurance." The nun asked if he had money in the bank. He replied, "No money in the bank." The nun asked, "Do you have a relative who could help you?" He said, "I only have a spinster sister who is a nun."
The nun got a little perturbed and announced loudly, "Nuns are not spinsters! Nuns are married to God." The patient replied, "Send the bill to my brother-in-law.”
Black Eyes and A Golf Club –
A man staggers into an emergency room with two black eyes and a golf club wrapped tightly around his throat.
Naturally the doctor asks him what happened. "Well, it was like this," said the man. "I was having a quiet round of golf with my wife when she sliced her ball into a pasture of cows.
"We went to look for it and while I was rooting around, I noticed one of the cows had something white at its rear end.
"I walked over and lifted up the tail and sure enough, there was my wife's golf ball...stuck right in the middle of the cow's butt. That's when I made my mistake."
"What did you do?" asks the doctor.
"Well, I lifted the tail and yelled to my wife, 'Hey, this looks like yours!'"
Quote of the Week:
‘The most important thing is to be happy, to enjoy your life…it's all that matters'
- Audrey Hepburn, 1907-1993
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