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I Want Some E-mail friends!

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Kym24	I Want Some E-mail friends!	Lead	[-]
Posts: 23 (06/07/06 02:51:44) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Tags : None HI All, I have been going through the bad 'A' and im on a downhill slide at the moment and feeling a little alone. I have a great husband and 4 year old girl. I live in Margaret River Australia. I was hoping that there are some australians out there that are also going through this. I want to talk to anyone about anything. I am just about house bound and finding talking to people face to face hard. I am also on the look out for new drugs that could help as my doctor really doesn't know much about the 'A'. But at least he had an open mind to suggest it. My e-mail is rassimons@yahoo.com.au. Hope to be chatting soon. Kym Simons
RevSerenity	Re: I Want Some E-mail friends!	#1	[-]
Posts: 189 (06/07/06 08:56:48) Moderator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Kym, I'm not in Australia, but am willing to be an e-mail friend, and even an IM friend. In fact, anyone that wants can add me to IM. That is the way I prefer to "talk" with others. It's almost like having a phone conversation. My mother can't understand why I prefer to phone or IM others, instead of writing letters and e-mail, but I like the immediate response. If anyone would like to add me to their IM, MSN is serenity_acorna@hotmail.com, YIM is acorna_serenity, and AIM is RevSerenity. I don't use the AIM much, but still have it available for some things. Yes, I know this is a public forum, and this information shouldn't be out there for just any idiot to find, but I don't mind. After dating a private investigator, I know that any information about a person can be found without any more given than a nickname. Serenity
jan	Re: I Want Some E-mail friends!	#2	[-]
Posts: 14 (06/09/06 14:21:07) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi Kym, I am in Toledo, Ohio and have been following this board for about a month. Haven't posted much since the love of my life was diagnosed with prostate, bladder and uretheral cancer the first part of May. On the 25th he had a 6 hour surgery to remove all of the above. He has a Urostomy now and recovery is slow but he is coming along. Got Oral Thrush from all of the antibiotics and after 9 days of ice chips finally got some food in the Hospital but it tasted like "cardboard". I finally figured out that his taste buds were inflamed! Two days of meds and he is starting to taste again. I was diagnosed with AA about a year ago. Surgeon cut into the dura during laminectomy in 8/2004. He did a fusion on 12/13/04 and on 12/23/04 had emergency surgery for a large blood clot. Have some typical and some of the more rare symptoms but the worst is the nerve pain in my legs. My private e-mail is janpratt@bex.net. Feel free to e-mail anytime. Hope to hear from you soon. Jan
Radene Marie	Re: I Want Some E-mail friends!	#3	[-]
Posts: 27 (06/10/06 11:16:02) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi there Kym! AGAIN, not in Australia, but I would love to be an e-mail buddy! I'm in Southern California, USA and have had ARC or "AA" for four years now. They broke through my dura while doing the second Discogram and I had to get a blood patch - the "Miracle Grow" of Arachnoiditis. Two spinal Surgeries after that and the fun just keeps going! I have a husband- Doug, Mom - Marj, and Fabulous-O mobility dog - Raja that all live with me. I'm an artist and writer -- my husband built me this really cool rolling bed desk that lets me do all of my stuff lying down YEAH! my email is mrsrmc@aol.com and my website is www.cook.myexpose.com . Stop by the web site if you'd like to see my stuff and read a piece of the book I'm writing -- or if you just wanna relieve boardom!! Have you been to Dr. Sarah Smith's website on Arachnoiditis? I think it's "ASAMS" or something like that... it's a really good site. I hope to hear from you soon! Oh and Jan, I'm very glad your husband is home! Please tell him my family says HI and God bless him and his recovery! I asked God for an angel to help me, and a dog came and sat by my side. -- Radene Marie Cook
Kym24	Re: I Want Some E-mail friends!	#4	[-]
Posts: 23 (07/04/06 04:08:48) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi, Thanks for answering and i am sorry i have not got back to you all. But i will be getting in contact very soon. I came to the site today looking for a little pick me up as when I went to my doctor to get him to write a letter saying that he is sure there was no other way that it happened but the epidural. Now im off again to have a CT and see 2 Neuro Surgans. I am being treated for 'A' yet why is my doctor stalling. he is a great man. And he was the one that said that this could be it and looked it up and everything and said yes it looks like u have 'A'. Anyone else going though this. I'm really down at the moment because tomorrow is the day for the CT, im scared. Thanks all once again and i will be e-mailing u soon Thanks Kym
jan	Re: I Want Some E-mail friends!	#5	[-]
Posts: 14 (07/05/06 17:33:26) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi Kym, This may be a duplicate. Somehow I hit the wrong key and lost my first try! What you are experiencing with your Dr. is not unusual. Most of us have been there. Drs. are reluctant to place "blame" on surgeries or procedures because it reflects back to the Dr. you performed them. I worked for Drs. for 25 years and know the game well.! At least he is treating you for A and not sweeping it under the proverbal rug. My Pain Mgmt. Dr. kept referring to Fibromyalgia with any knew symptoms I told him about. On the other hand, my PCP actually uses A as my diagnosis! I have decided to have my PCP manage my pain meds. She is really excited about it and loves it when I bring her info on A. Hang in there you may never get a direct answer but you never know! I read your other e-mail too. Your parents sure have a lot going on. My brother is rather quiet about my health problems but my sister-in-law tells me that sometimes he breaks down in front of her. Just remember, you have all of us and you are not alone. Stay in touch. Jan
aussieredback6	Re: I Want Some E-mail friends!	#6	[-]
Posts: 1 (08/02/06 18:04:30) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi Kym, and everyone else out there in CIAA land, I too live in Australia Kym with at least 80,000 other Aussies (Aussie Govt figures) that suffer from this 'man-made' disease. I am so sorry Kym we meet this way and as I am sure all others here would also tell you that 'you are now no longer alone'. Kym, I was heavily involved with the A fight (1993 to 2004) not only at a personal level (as a sufferer but professionally (10 years Worldwide Research in 107 countries, (see link at bottom) Im in the health field myself, like Sarah whom Im in contact with and have been for at least the past 12 years) however, when I finished my research and for 'many' other reasons decided to stop being directly involved, but enough of that Kym, if you wish to make contact please do so. I closing, remember Kym for most (not all, but around 94%) of Arachnoiditis sufferers, a 'too toxic chemical dye' was the cause, and to expose oneself to more chemicals (unproven 'related' drugs) when one now is hypersensitive to all chemicals (including specific Additives in the foods that we now buy (14 to date)) will make you worse. These chemicals and food additives only inflames the pain by increasing inflammation of nerves the nerve endings, tendons and related muscle tissue, so be careful Kym what you take for most medications only cause us more grief. For many CIAA sufferers, a specific range of meds and natural subs have reduced their pain especially neuropathic. (The burning pain and stiffness of the muscles etc) Well I hope to hear from you Kym take care. God Bless, Derek www.theissue.com.au/www_r...020102.pdf

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