06 - Sandra a.k.a. organist925
07 - Sayte a.k.a. Bump
13 - Rochelle a.k.a. Tori
23 - Marilee a.k.a. emtee
23 - Tom a.k.a. TakTOM
26 - Melissa a.k.a. tjulsey76
29 - Val a.k.a. Munchkin (we'll celebrate oon the 28th, K? LOL)
Because we respect the privacy of our friends we do not give out e-mail addresses unless specifically asked to do so. Please stop by our message board to post your birthday wishes! And a note to you birthday people! Don't forget to check the message board to get all your well-wishes soon - birthday posts are removed after one month in order to conserve space!
I am very disappointed to hear during most of our chats or doing posts on the board how many of us are still in pain. It is approximately 95 percent in pain. And most people do not feel that their pain meds (mine included this month) are effective. The only good news is Terry's who are working so effectively that he has been busy living his life and I think that is great and what we all deserve. We are sending out the pain management forms to those of you who requested it and sent me your snail mail addy. I hope that these forms and some dialogue with your doctor or whoever will help you get the relief that you deserve. - Debbie
Working with Crohn’s from Kathy a.k.a. vogkat
I wanted to write this to offer some support to all of you. Not only those who still manage to work full time or part time, but to those of you who are not able to work. I would be lost without gainful employment – you see, I’m a workaholic of sorts. In addition to working full time, I also work part time from home. For me, not being able to work would create additional stress and havoc in my life. I assume it would also cause a fixation on my illness; not to mention the loss of financial independence, lowering of my self-esteem and a fear of dependence on a shaky state medical assistance program.
It’s not easy to get up and go to work everyday. Here’s how I’ve managed to cope:
I wake up (usually after a restless night’s sleep) an hour earlier than I should. This allows me time to go through the morning diarrhea ritual without it interfering with a commute to work. I do not eat at work since any digestion seems to trigger more diarrhea or cramping. If I’m hungry at lunch I try to make it home. Or any safe place where I can eat and take care of business before it’s time to go back. And, a co-worker who asks me to have lunch is a touchy subject. I try to be polite but always have something planned. My diet restrictions are very obvious and most often I prefer not to go into the details of why I eat like I do. Not to mention the pills I take during that time – it’s just easier to keep that part of my life to myself. It’s one of the ways I cope.
Crohn's disease and ulcerative colitis don't just affect us physically; they often take an emotional toll as well. When symptoms are severe, life may revolve around a constant need to run to the bathroom. In some cases, we may barely be able to leave the house. And, when you do, you might worry about an accident, and this anxiety only makes symptoms worse. I find that making light of the situation – with humor – helps a great deal. When I’ve been having a lot of problems, I usually carry spare clothes or at least under garments or pantyhose. Sort of like a security blanket that only I know is available.
One of the best ways to feel more in control is to find out as much about your disease as you can. Having spent the first decade or so with this disease without information available, I speak from experience. Knowledge and understanding eliminate fear and stress over what is happening. For me, working has also given me a sense of control. I can afford medicines without scrimping elsewhere (like food or clothing). We all know how expensive this disease can be, even with health insurance. I’ve always been up-front with employers with regards to insurance. That’s something that does scare me … you can’t help but worry that you are “costing” money and will be let go. But, I feel fortunate that I’ve been able to move about through different jobs, switching insurance companies as I go, without any long-term repercussions. My paper trail for my entire working life has said “pre-existing condition” but I have been quite fortunate to always stay employed in whatever job I choose.
But, I rarely miss work. No matter how horrid I feel in the mornings or how little sleep I have had, I force myself to get up, get in the shower and get dressed. I use less sick time than healthy people. Most of this comes from a fear of “those times,” you know, when things get really ugly. They do happen and I would prefer to be active and available until those days come. When I’m scheduled for a scope or other test, I prefer to take vacation time. That way it’s no ones business but mine. I schedule doctor visits around lunch if possible or early or late in the day.
These practices are not just in my work life. I don’t miss church; I keep active in the community and spend time working on my hobbies too. Each of these could easily fall victim to Crohn’s. For me this general attitude started when I was first diagnosed. Partially out of ignorance (since I was so young and really had no idea what Crohn’s was or what it meant) but also because my parents stressed that I was no different than any other kid. I played hard, worked for what I wanted and gave as much as I could to those around me. I often wondered if they had made a big deal over every pain or bout of diarrhea whether I could be as free and independent as I am today.
This is not to say I don’t understand how things can change. They may for me in the future as well. But, for the time being, I am happy to be a working stiff – happy to get up and scrape the ice off of my windows each winter morning before my trek to work. For those of you who also work, keep the faith. It’s not easy but the rewards are great. For those of you who do not or can not, we understand. But, keeping busy is good – maybe by volunteering as a reading mentor or a Big Brother, by getting involved in the community or at a church. By taking care of those less fortunate. I feel good about myself because I am not a victim of Crohn’s. Yes, I happen to have it and it annoys the dickens out of me … but it has not kept me from living.
From Sheila aka sheinfla
On our local news today (Sunday, January 13, 2002) was a 4-minute segment on Chrons (their spelling) Disease. Below is copy of my response to them:
I am so upset by the lack of understanding of Crohns Disease (please note correct spelling!!) on today’s Your Health segment.
Poor Mr. Hartley has no idea what he most probably has in store!
Crohns is an incurable, most often debilitating disease. While a very few may simply go into 'remission' on meds, most suffer greatly both with and without the many surgeries they go through.
You had a great 'ad' for the new intestinal camera, but did your viewers a great disservice. Especially when Mr. Hartley said he was so happy to find out he didn’t need surgery and this was something simple that he could take meds for!
I have lived with Crohns for over 35 years; have had innumerable surgeries to try to control the disease as well as from its related problems.
I belong to and help moderate chat rooms, message boards and support groups and if you would just visit one and see what those with this illness have to say you would apologize to all of us for 'light' tone of the segment and for the lack of information.
Upcoming Event -
Bowl-A-Thon
Jan a.k.a. JCO57
There is going to be a Bowl-a-thon to raise money for CCFA (Crohn's Colitis Foundation of America) on March 24th 2002. A number of my family will be bowling, in hopes of helping to one day find a cure for the disease. However each bowler needs to raise $50 a piece in order to participate. Here's the favor! If any of you would like to help, I would appreciate it very much, for any donation you would be able to make.
Hopefully before too long, this disease will have been cured, or at least treated with more successful medications to ease the symptoms. Thanks for taking the time to read this.
If you want to contribute to this VERY worthy and fun event and need Jan's address to send her a donation or get more of an explanation, please contact Debbie and she will put you in touch with Jan. THANKS!!!
For Resources that deal with Internet addiction, as well as tips on cyber-wellness. Check out:
This site has a lot of good info on depression.
http://hometown.aol.com/amykozy
A smart peek at a wide range of subjects and how they affect women. This one should be used with discretion:
Here's a good website all about Aromatherapy:
Lee Ann a.k.a. gruppy
It is with GREAT Pleasure that Chronnies Chat has named Lee Ann as Chatter of the Month. She is a wonderful, compassionate person posts on the board articles of interest to us all, in addition she has contributed much to the ChronniesChat newsletter with her insurance articles. No matter what the problem with insurance you can count on Lee Ann for good advice that works. She is a most valuable asset to our group, not only with her knowledge, but with her sense of humor.
ChronniesChat would not be the success it is without LeeAnn .She is terrific at chats, and in one-to-one emails. Thank you Lee Ann for all your help and support!
You can read Lee Ann's bio on our message board.
When we criticize another person, it says nothing about that person: it merely says something about our own need to be critical. - Richard Carlson
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