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New to the board, but not this site

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Radene Marie	New to the board, but not this site	Lead	[-]
Posts: 27 (12/02/05 15:49:19) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Tags : None Even though I just joined this BB, this site has been SUCH a blessing to me for the past 2 years. My name is Radene and I'm a 39 year old American Indian woman from Southern California. I was diagnosed (can you believe it?) with ARC and Intractable Pain Disease almost 2 years ago. It all began on March 16, 2000. I was an airborne reporter for a news station in Los Angeles when our aircraft got SLAMMED with a microburst of clear air turbulence . It was the worst I'd ever been in and it nalied my spine big time! L3, L4 were weakened and damaged, L5 was split completely in half; whiplash, concussion, all the fun stuff from being knocked about in a metal can . All that detail to sum it up with this: 2 spinal surgeries, 2 discograms, one spinal puncture with SF leak and subsequent blood patch. 12 epidural injections, facet blocks, nerve blocks, etc. adding up to 79 total needle sticks in my neck and spine. That brings us to the hellish world of ARC and Intractable pain that we all share. I am really looking forward to speaking with others who know what it's like to feel as if an electric company took up residence under your skin -- and sweating in 40 degree weather-- and not being able to recall what you felt like before all the pain. I want to know, beyond the shadow of a doubt, that I'm not alone in this... so that's why I'm here. You all seem so kind. I know that posts are pretty old, but I'm hoping a few of you are still around. Thanks for reading this far. God bless you all and Merry Christmas and Happy holidays to everyone as well. I asked God for an angel to help me, and a dog came and sat by my side. -- Radene Marie Cook
tribblepuppy	Re: New to the board, but not this site	#1	[-]
Posts: 484 (01/26/06 18:26:26) ezOP Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hello Radene, I, too, am a resident of So. Cal (Palm Springs area), and I am glad that you think that this board is a good place to be. Unfortunately, my health has kept me away for far too long, and now I want to be able to get people to come back and participate, and help others that come here. I certainly can relate to the symptoms you describe, and I know that they can be overwhelming at times. But rest assured that there is someone that made a pst here that could help you in some way. I have been reading the past posts that I have missed, and have replied to a few, and it still amazes me that some people can get from one day to the next being in the condition they are in. Please continue to visit here when you can, and help if you can, or ask for help if you need it. That is why we are here. Best wishes, Tribblepuppy B-)
Radene Marie	Yeah!! I'm so glad you're here!!!!!	#2	[-]
Posts: 27 (02/09/06 17:13:36) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	This is so great! I was very glad to get your responses -- I'm just sorry it took me so long to respond. But it was for good reasons: my husband and I and an advocacy group I'm in were working with the California Medical Board and their Pain Management Laws Task Force making the pain statuets MUCH more user friendly for all pain patients ESPECIALLY those of us with intractable pain. WOO HOO!! I was so thankful to know that this BB was still open. I had tried COFWA twice before but they never responded. The thought of actually being able to talk with people who understand and can maybe give a hint or two. Thank God! For instance: Does your skin react with the Allodynia symptoms? I know mine does MADLY! My sheets all have to be sateen (brushed cotton) now, and all my clothes soft or smooth and cool( silk, or thin satin, etc.). Just some other symptoms I wanted to check. I'm going to go back through the other posts since you mentioned it. That sounds like a great idea. Again, this is my first BB so thatnk you for your patience and your hints in getting all I can out of it. I hope to talk with you soon. thanks and God Bless.
ajmcgill	Re: Yeah!! I'm so glad you're here!!!!!	#3	[-]
Posts: 3 (02/24/06 13:57:00) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	I'm glad you're here although it's too bad you have ARC. I was diagnosed in December so I"m still learning about this. Hope you will reply, it would be great to talk to someone. Anne M You can't pray a lie. Mark Twain
Radene Marie	Re: Yeah!! I'm so glad you're here!!!!!	#4	[-]
Posts: 27 (02/25/06 08:54:01) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Dear Anne, I'm sorry you have ARC, too, but --selfishly -- I'll be so glad to have someone to talk with. So . So... how did you get ARC? (if that's ok to ask). Is it lumbar? I know what you mean about just beginning to learn about the symptoms. It amazes me how much is affected in our bodies that you would typically not associate with a spine injury/disease. This site, the one from Ausralia and The book, "Adhesive Arachnoiditis: The silent Epidenic" are all really helpful. BUT, I know for me that I can read data all day long but it means SO MUCH MORE to me to hear (read) from fellow patients that the same things that are happening to me are really happening to them. That kind of validation to me will be wonderful!!. How about you? I'm so glad to have a buddy here and I look forward to reading your next post. Talk to you soon!! I asked God for an angel to help me, and a dog came and sat by my side. -- Radene Marie Cook
RevSerenity	Re: Yeah!! I'm so glad you're here!!!!!	#5	[-]
Posts: 189 (03/28/06 21:54:05) Moderator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Yeah, the feeling that you are placed in a roaring fire, and even a breeze hitting it makes you want to scream, the "electric wires that are uninsulated" along all the major, and some of the minor nerve pathways, the muscle spasms that can literally throw you out of a chair, and all the wondering of what will happen next. Those can be so frustrating. Especially when you have a doctor in the ER that asks what might be wrong at home that you feel you need drugs to handle it. I actually had to write to the ER CoS and let him know how I was treated, and that I didn't appreciate it. He actually took the time to contact my PCP and then to call me and apologise, and placed a note on my file there that if I came in, I was to be treated without question. I try not to use the ER, but sometimes this gets to be too much, and I need something more than what I have at home. Just knowing that there are others that have those same symptoms, and can commiserate, helps. And the advice from those who have gone through all the different procedures, and can say what has helped and what hasn't, is so helpful. Shall we all give a standing ovation to Tribble for his Trouble? Oh gee, I'm thinking Star Trek now. Better go, before my mind really wanders. Serenity
Radene Marie	Re: Yeah!! I'm so glad you're here!!!!!	#6	[-]
Posts: 27 (03/29/06 02:33:47) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Well Stated, RevSerenity! I am so proud of you that you reported what happened with that ER doc....and I am very glad he called and apologised. THAT is so rare. I realize that ER doc's must see a great deal of drug seeking but SERIOUSLY How many drug seekers can have such accurate information about their disease and it's effects -- do they ever stop to think about that?! NoOOOOoo! Oh well, different topic: I had a new MRI and CT Scan done yesterday and today I was able to get a copy of both on a CD! It's all digital now so if anyone has a new test coming up, ask if you can have a copy. That's all I did was ask on the off chance it could happen and I got the disk for free. Ok, I guess it's time to go but I had to say hello, it's so nice to meet you, thank you for having wonderful things to add here and I too add a THANK YOU to tribbleP for these rockin' smiley's! G'night I asked God for an angel to help me, and a dog came and sat by my side. -- Radene Marie Cook
tribblepuppy	Re: Yeah!! I'm so glad you're here!!!!!	#7	[-]
Posts: 484 (03/31/06 17:00:05) ezOP Administrator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Serenity, So sorry about what hqappened in the ER with you. That happened to me once when I had a kidney stone attack. I was in the ER for over 3 hours, screaming in pain and throwing up all over the place because the Dr. thought I was just there for the drugs. Well.... DUH!!! Of course I wanted drugs! Anything to relieve the pain. Finally, my (now-exwife) came in to the ER from work and got in the face of everyone there insisting that I was not "faking" it. I finally got a shot of demerol and was sent home. Thank God the stone passed the next day. Needless to say, I was writing letters to everyone connected to the hospital, including my government officals. Never got an appology, though. Now I know what it is like for a woman giving child birth. Radene, thanks for the tip of getting scans on CD/DVD for personal use. Sure would beat carrying around a stack of films. Tribblepuppy BTW, tribble is from Star Trek, and is the name of my little female Yorkie.
Unregistered(d)	ARACHNOIDITIS	#8	[-]
Posts: 0 (08/19/06 23:31:35) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Does anybody know a Doc. in seattle Wa. that deals with this stuf. I been to so many Doc. that I can't keep track.It would be nice to get a good nights sleep for a change.I am luky my wife has been with me and helped with thing for the last 20yrs.. I do'nt know want I would have done wiuthout here.But it still is hard to dell with a lot the time.

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