1 June 2002 Chronnies Chatter Newsletter

Chronnies Chatter Newsletter

1 June 2002

Music playing (for those using IE...sorry Netscape users!) is Great Balls of Fire!!!

Note from Debbie - It always amazes me how one someone we don't know asks for help - so many of you respond. I had tons of replies in my mail this month from people who wanted to speak with Penny, wanted to help someone find a hospital, had suggestions for people whose bio's. they read. It is great to be with such a supportive group of people.

This disease is chronic, demoralizing, isolating, and embarrassing and painful if you let it be. It can rule your life if you let it and so many of the Chronnies people have chosen instead to reach out and live their lives and not let this disease dictate to you or let it run you. You have been examples of living to others who might not have known another way. People are constantly looking for ways to cope with their pain, their personal problems and everyone in the group is always there to show people a
way they have found. We are all alike, yet different the way this disease presents itself. It is a wonderful thing that you do each time you answer an email, or post on the board or correspond with someone you have not met, but reach out to. It is very special to know you and I am grateful that you give your time to the boards and the chat!

Please remember we do not give out email addresses as part of our policy at ChronniesChat, either in the chat or at request, we will however forward or ask the person who wants to correspond with someone if that is ok with them.

Happy Birthday to the month of June Babies -

09 - Caz aka Hippy Hip

09 - Ben aka dude811

14 - Leanne aka sunshine1977ca

24 - Deanna aka antithesis

25 - June aka randolandjune

27 - Chuck aka cmassar

Because we respect the privacy of our friends and we do not appreciate getting “spammed”, 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!

Catching up with Cheryl aka Loyal

Since my last write-up things haven't changed that much. I am still
enjoying remission. I am sure that it is because I take herbs. However,
there is one area where there is a big problem and that is my bones. I
guess my ? thyroid (I can't remember what it's called) is working overtime
because I am not retaining enough calcium and because of this, my body is
taking it from my bones. I take 2000 mg. per day and it still isn't enough.
My doctor is going to try me on some nose spray called Micalcim. She also
sent me to a bone specialist and he wants me to start getting IV calcium.
Unfortunately, I have to go to the hospital once a week and spend about 8
hours there to get it. I can't do it myself at home with my other IV
because they have to supervise this one, for some unknown reason. I'm not
too happy about that, but I'll do whatever it takes to stay healthy and get
rid of this blasted osteoporosis. Also, I go every other month to the
hospital for another IV called Pamidranate. That is also to try to
strengthen my bones. So, with all this, I am hoping that one of these
months, I will be completely healed. However, I thank God every night for
the health that I DO have.

The best thing that has happened to me besides getting my health back is the
birth of my grandchildren. I really enjoy spending as much time with them
as I can. My granddaughter Kerstyn is now six and in grade one; and my
grandson Nicholas was born December 27,2001. They are everything to me!!!

I have finally found an apartment for myself and I hope that I never have to
move again. I absolutely hate moving. I love this place, and if I can get
a subsidy from the government, I will be in Heaven here! It is absolutely
perfect for me. My son has been with me for the past several months because
he was going to college. He finally finished in April. He made the Dean's
honor roll each semester! I am SO proud of him!! I now pray that he gets a
really good job.

To sum it all up, I guess that my tip would be to try not to worry about the
things that don't amount to anything. It's just not worth it. I also truly
believe that herbs have helped me to stay this healthy. Your friendly
neighborhood health-food store has a lot of information for you and a lot of
good nutrition. However, the most important thing is to have a lot of faith
in God. He will always be there with you. Cheryl aka LoyalAlways

CLASS ACTION LAWSUIT BEING CONSIDERED FOR ALL PATIENTS WTIH CHRONIC DISEASES - by Lee Ann

Ok, a while ago, I went on a rant about the lawyers.

I've been thinking about something, and though it may look like I'm just
ranting again, I'm actually serious about this.

Lawsuits are all over the place, and in one of my rants on the board, I made
an observation about one day some wise guy will probably sue the drug
companies for not making anymore new medicines, and taking away the ones we
already have.

Ok, so I'm a wise guy; no surprise there. But, I'm not thinking in terms of
going after the drug companies. I want a lawyer who is just a little bit
nuts, and whose client base doesn't involve people suing the drug companies.
Such a lawyer cannot be involved in any of the drug company mass torts, now,
or in the past.

I want this lawyer to sue the other lawyers (you know which ones--they
have ads all over the newspapers and television all the time--they should
have their own channel!) The basis of the lawsuit is this:

I would like to sue the mass-tort guys (aka ambulance chasers) on behalf of
myself and all other individuals who have a chronic disease which may
require strong medicine for long periods of time, if not permanently.
We know these meds are bad for us, but they are given as an alternative
to allowing our disease to be uncontrolled and putting our lives at
immediate risk. We don't enjoy taking them, nor do we enjoy the side
effects. And though I am not on any of them at the present, it is a comfort
to me to know they are available if I do need them.

I am SUFFERING at the thought that if the lawsuits keep up like
they are, those meds might not be there when you and I need them in order to
not DIE!

On that basis, in trying to prevent that disaster, I think a lawsuit
should be filed against the other lawyers whose actions may result in a lack
of access to life-saving treatment. They are, systematically, taking away
the incentive for the drug companies to continue research and development of
the treatments we need, which may cause harm to all of us with Crohn's and
any other chronic disease, in the cessation of studies and development of
new drugs and the withdrawal from the market of existing drugs.

Many of us also have arthritis, secondary to Crohn's disease, and the
arthritis drugs are also being targeted; there are some who are trying to
remove these drugs from the market. Hide and watch: they will start in on
remicade before it's over with. There are already suits in my newspaper
about remicade.

This also applies to diabetics, people with hypertension (high blood
pressure), high cholesterol, depression, severe pain, lung disease, and
any other long-term illness, and now there are ads suing makers of birth
control pills for the increased risk for cervical cancer, which just about
takes the cake. The pill has been around for years, and any of us who have
taken it have read literature, magazine articles, etc, and are fully aware
(unless living in a cave in Afghanistan) of this risk. This mess has to
stop.

If you are interested (and I remind you that this is NOT one of my
pranks) please email me. If you know anyone else who has a chronic disease,
I'd like to invite them to reply, too. All I want is your diagnosis, your
name, and the state you live in. If you want to include anything else,
that's ok, but strictly up to you. This isn't about an invasion of privacy.
It's about standing up for the medicine we need, and the more voices we have
in this, the stronger the message will be.

Depending on the response I get, I will be getting in touch with someone
regarding the logistics of doing this.

Thanks for any input you give,

Lee Ann/gruppy email: lamerritt67@hotmail.com

REMINDERS: We are still taking tips for our webpage on how you cope with crohns disease, please submit them to Debbie - debbie12564@yahoo.com If you are not sure what you can contribute, go to the website and take a look at what
we have. Click here for our Crohn's Tips.

Keep those photo's coming in! Sandra keeps them all updated so we can see
what we look like and what the grandkids look like - make sure to check back
often!

CHATTER OF THE MONTH:

Renee aka mainelady

Congratulations go out to Renee our Chatter of the month - Renee is a tireless Chronnie, a Cheerleader in the chats along with a leader, she is an excellent example of how to live your life with this disease. She has secondary problems, however it does not interfere with her outside activities, which hopefully soon we will be able to show you more pictures of. She works on behalf of other organizations, her latest project singing with her husband on stage. She helps the newcomers with words of advice, tips BIG to all the bartenders and is always there with a kind word, a quick IM asking how YOU are, when you know that she has physical problems of her own. We were hoping that there would be a bio that you could refer to but ALAS there is not, you just have to jump in, as she does and get to know her, as is our privilege to do so. Congratulations Renee and thank you for all you do on behalf of ChronniesChat.

Tom's Recommended Links:

An excellent resource for Crohn's disease contributed by Chelle:

http://www.medicinenet.com/script/main/forum.asp?track=ef&articlekey=332

Here's one for the care of your pets. A virtual animal hospital for pet lovers everywhere.

http://www.thepetcenter.com

If it's got a history, then it's HERE at this site!

http://history.evansville.net/hist_of.html

Food for thought - Life will bring you pain all by itself, your
responsibility is to create joy - Milton Erickson, MD

Our Crohn's Tips

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