If you want access to the private forum... - Sybermoms Parenting Forum
Adults with Chronic Conditions A forum for adults who suffer from a chronic illness or condition to receive support.

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post #1 of 88 (permalink) Old 11-17-2004, 03:44 PM Thread Starter
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If you want access to the private forum...

... you must have at least 400 posts in public forums. PM forum moderators Boo and Tigerlilly or forum admin Pudin for access.

If you don't meet the criteria for private forum entrance, you can still ask questions and seek support here in the public area. Don't be bashful; just speak up and let us know why you're here! It's a great group in the CC forum, and there's always room for more.

Last edited by Tigerlilly; 05-18-2005 at 11:11 AM.
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post #2 of 88 (permalink) Old 02-03-2005, 10:56 AM
 
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admittance to this forum so I can whine, please..

chronic asthmatic here, been one year and 3 months to try and figure out a treatment plan, but have had no success..
Please allow me and my combivent in.
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post #3 of 88 (permalink) Old 03-03-2005, 12:02 PM
Dark Lady Jada
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Tigerlilly, what if we have been here 2 months but can't afford the membership? Cause I can't PM you Click here to enlarge
post #4 of 88 (permalink) Old 03-08-2005, 07:15 AM Thread Starter
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You'd post here. Click here to enlarge Check back periodically over the next couple of days to see if you've been added.
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post #5 of 88 (permalink) Old 04-16-2005, 03:20 PM
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Guess I'll just do my time and wait then. Click here to enlarge

I have a chronic condition which is currently incurable with today's technology. It's called Thorasic Outlet Syndrome. In nature, it is very like Carpal Tunnel Syndrome, except that it affects the Thorasic Nerve instead of the Carpal Nerve. For anyone experienced with Carpal Tunnel, the easiest explanation is that I have it all the way up my arm, into my spine.

It's cause is the reason it's inoperable. I have extreme "tendon laxity," which is a fancy way to say I am double jointed and more flexible than Gumby. In short, my tendons give so much, my joints don't stay in place. This has caused "multi directional instability" in my right shoulder, meaning it flops around at willl, dislocating constantly.

Which irritates the nerve (TOS), cartilige (arthritis) and bursa (bursitis.) The standard cure would be to shorten the tendons, but because of the laxity, they would only lengthen again. Repeated surgery to shorten them again would cause scar tissue build up, defeating the purpose.

See you on the other side in a couple of months, 350 posts and $15!! (I hope!)
post #6 of 88 (permalink) Old 04-22-2005, 09:55 PM
remedios
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I'm brand new here so it will be a while before I'm eligible for the private forum but I thought I'd go ahead and introduce myself anyway.

I was diagnosed with lupus (SLE) and secondary fibromyalgia syndrome almost 2 years ago. I also have sleep apnea and chronic migraines. I was a reasonably healthy person until I was 28 years old and then I suddenly embarked on this medical odyssey of frequent trips to the ER, hospitalizations, trips to specialists, tons of medications with all kinds of side effects and massive disruptions of my career and family life. My personal experience with chronic illness has caused me to rethink my future career plans and I am currently returning to grad school to pursue a degree in clinical psychology with the hope of working with people who are dealing with the psychological aspects of chronic illness (I've yet to completely flesh out how I'm going to manage this when I can't even get my own ass out of bed half the time but I'll cross that bridge when I come to it!). Anyway, I take part in a couple of pretty good lupus forums but I figure the more support the better so I'll be happy to join you guys when I've put in my time.
post #7 of 88 (permalink) Old 04-23-2005, 10:59 PM
Webwriter
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Guess we'll wait it out together Remedios!

Pleasure to meet you. What an interesting take you have on life! I think it's really neat that when faced with changing your life around you decided to take such a positive direction with it. I know I could have REALLY used just that kind of support/advice/cousel when I was diagnosed. Kudos to you!
post #8 of 88 (permalink) Old 05-10-2005, 06:36 PM
mommapollock
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I too am a newbie who will have to wait it out. I have Crohns disease and two kids and a husband who keep asking if I can eat that, did the dr say it was ok. Happy to have found you all though
post #9 of 88 (permalink) Old 05-13-2005, 06:31 PM
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Welcome!
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post #10 of 88 (permalink) Old 05-13-2005, 11:17 PM
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Can I get access? I don't post a lot but I have been at sybermoms for a while. I have fibromyalgia and disc problem in my spine. I am missing one disc completely and 2 others are in really bad shape and I will require more surgery in the future. I had a spinal fusion done in 1996 that has left me with nerve damage on my whole right side which leaves me in a lot of pain and I have chronic migraines because of it. I also have a bit of arthritis but that seems to be the least of my concerns right now.
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post #11 of 88 (permalink) Old 05-20-2005, 09:31 AM
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Click here to enlarge I pm'd Pudin and she said that she was adding me a few days ago, but I'm not in. Can I please have access?

I have had hives every day for almost two years now. It is "chronic" in the sense that I have to live with it everyday and it gets frustrating and really sucky.
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post #12 of 88 (permalink) Old 05-20-2005, 03:19 PM Thread Starter
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Lyerin, admins are the ones who go into the system and physically add users to the forum. We mods just send them pms and bug the shit out of them until they do it. Click here to enlarge

Give her a few more days before you think she's forgotten. Remember, the admins are mothers, wives, partners, employees, business owners, etc. and they all have real life stuff to deal with in addition to Sybermoms responsibilities. Sometimes it can be a few days before one of them has time to sit down and catch up on things like forum additions.

If you're not in by Monday or Tuesday, PM me and I'll poke Pudin with a stick. There's no sense in more than one of us risking our lives, and I'll take the hit since I'm the mod. Click here to enlarge
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post #13 of 88 (permalink) Old 05-23-2005, 09:26 AM
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Click here to enlarge Tigerlilly! I know what you mean about the admins having lives!

I wouldn't have posted anything except that in her PM, Pudin said she was adding me "right now" and I'm still not in as of today. I'm sure it was either my misunderstanding of how it works, or perhaps some glitch prevented me from being added.

I'll keep you posted as to whether or not I'm in.

Hives were Click here to enlarge this weekend and are not much better today. Especially the ones on my shoulder blades - of course right where I can't reach. Click here to enlarge
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post #14 of 88 (permalink) Old 05-23-2005, 09:54 AM
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Sorry about the hives. Click here to enlarge I'm happy to take the hit as mod too. Click here to enlarge My porch is too clean anyway.
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post #15 of 88 (permalink) Old 08-13-2005, 05:01 PM
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Finally I have made it to 400 posts, off to PM a mod to get in... I have fibromyalgia, asthma etc
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post #16 of 88 (permalink) Old 08-13-2005, 08:03 PM
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Did you pm Tigerlilly, or do you still need help?
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post #17 of 88 (permalink) Old 08-30-2005, 10:00 PM
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Send a message via Yahoo to Ms.Mayhem
Could I be added please? I am going through so much and I could really use some support. Thank you.
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post #18 of 88 (permalink) Old 09-01-2005, 09:23 PM
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I'm working on it for you, Mayhem.
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post #19 of 88 (permalink) Old 10-03-2005, 02:39 PM
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I have interstitial cystitis, which is a bladder condition.

I don't hae enough posts yet but will be cool with posting in here for a bit.
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post #20 of 88 (permalink) Old 11-02-2005, 03:14 PM
ellapea
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Hi I used to be member here before the computer died. So 18months on I got a new one, my old user name was either krissp or krissie I think. I have crohns disease and crohns related arthritis amongst other things. I did have the post count on my old name and wonder if I could be admitted to the forum. thanks
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