Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 CATHY I WANT TO LET ALL OF YOU KNOW HOW SPECIAL YOU ARE TO ME. I HAVEN'T TOLD RICHARD YET. (LOL) WILL TELL HIM TOMORROW. WILL LET YOU KNOW HIS REACTION. IT'S NOTHING LIKE A GOOD LOOOOVVVEEE STORY. (LOL) TAKE CARE RENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 In a message dated 09/01/1999 9:26:34 PM Eastern Daylight Time, RTI2264@... writes: > ECISION. I > NOW KNOW FOR SURE THAT SOMEONE CAN LOVE YOU FOR YOU. > > I DO WANT TO THANKYOU, FOR HELPING ME, W/MY DECISION. THOUGHT I WOULD JUST > TELL YOU. > > MAY GOD CONTINUE TO ALLOW YOU TO GIVE ANSWERS W/O YOUR KNOWLEDGE. (LOL LOL > LOL) > > LOVE YOU > AND THANKS Rene what a great letter and congratulations on your decision I am sire you made a very happy and lucky man. You spoke volumns when you said about your initial dx and the people you knew with it. Essenta\ially the same happened to me. other Luppies I had met at the doctor office or in a support group were so ill with systemic failures of one sort or another. All I could do was thank God it wasn't me. I knew I had it bad but they made me realize then that I wasn't as bad as a lot of others. YEs together we will fight the fight and try to unturn any and all info on this disease, I know whenever I see anything even remotely promising I research it and have my cousin who is a nurse research it as well through work. Some day we will have a GOOD treatment regime that will work to give us back a life quality Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 Hi : Sorry to hear your having a flare and in so much pain. If it is really bad the pain med MS Coton is really helpful to alot of people without severly doping them up. It is time released also. May be difficult to get docs to write for this but it may be worth a shot since you have to have quality of life. I have read that Colchicine is a med that can help with RP especially with the ear flare ups. Have you asked your doc about this. It doesn't contain any steroids (at least I don't think so). Also Dapsone is a form of steriod which I have read that also helps. Thought I'd throw this out there for you to see it these might be options. Your in my prayers. Hang in there, we are all pulling for you!! Take Care, Idigflower@... wrote: > From: Idigflower@... > > In a message dated 9/1/99 7:41:42 AM Central Daylight Time, RTI2264@... > writes: > > << Keep praying and remember God does not put more on us than we can bare >> > > Rene, You Got To Be Kidding, Right? ( we must have two different gods) My > god is testing the hell out of me right about now! > > My Problem is I am allergic to just > about all the Immunosupprerives (Metho-Sores, Arava-Rash and Sores, > Imuran-not to sure its working now). I will not stop looking for the " Magic " > answer on how to stop or at least slow this down, I MUST GET OFF this Pred, I > kno black and blue from the Prednisone now and now have platelet probs from it > and not to mention also my esphagua yeast infection, boy was that a blast > (felt like heart attacks) . I know this sounds nuts but I will go from cost > to cost, country to country if I have to at this point, to find something > that will help me (Drug) or at least something to get me off the Prednisone. > People have e-mailed me telling me I have to deal with some pain and some > disappointments (from our group), well let it be known I do not have to be > this miserable and in so much pain, I feel like a bird is pecking my inner > ears out, it is the worst imaginable pain I have ever known, enough to push a > person over the edge, this has gone on to far to still be like this, I need > to find additional help and I WILL! and when I do I will share. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 Hi Rene: So happy to hear of your decision. seems terrific and willing to stand by your side. It is truly a blessing to find someone to suppport and love you with illness! > E AND IF NOBODY ELSE LOVES ME, BUT GOD, SO BE IT. YOU > REALLY HELP ME, AND WHEN YOU TOLD US ABOUT YOUR LOVING HUSBAND I STARTED > THINKING ABOUT RICHARD. WHETHER I SHOULD MARRY HIM OR NOT. (RICHARD HAS ALSO > TOLD ME I WAS PRETTY, I KNOW I'M NOT, BUT HE THINKS SO.) I HAVE DECIDED THAT > I WILL MARRY HIM. YOU AND THIS GROUP, HAS HELP ME COME TO THIS DECISION. I > NOW KNOW FOR SURE THAT SOMEONE CAN LOVE YOU FOR YOU. > > I DO WANT TO THANKYOU, FOR HELPING ME, W/MY DECISION. THOUGHT I WOULD JUST > TELL YOU. > > MAY GOD CONTINUE TO ALLOW YOU TO GIVE ANSWERS W/O YOUR KNOWLEDGE. (LOL LOL > LOL) > > LOVE YOU > AND THANKS > > RENE > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 In a message dated 9/1/99 8:26:38 PM Central Daylight Time, RTI2264@... writes: << RENE >> Rene, again thanks for the support, how old are your children now? and do we know if our children will get this or can they pass it on to their children? If anyone knows this let the group know please. Rene, I wish we lived near eachother! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 In a message dated 9/1/99 9:29:53 PM Central Daylight Time, RTI2264@... writes: << . I HAVEN'T TOLD RICHARD YET. (LOL) WILL TELL HIM TOMORROW. WILL LET YOU KNOW HIS REACTION. IT'S NOTHING LIKE A GOOD LOOOOVVVEEE STORY. (LOL) TAKE CARE RENE >> Hi Rene, I wanna hear about it too! Can we all come to the wedding? lol Love ya! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 how many of us walk the house most of the night? Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 I have an address Web site one for something for the bed under my other screen name it is highly recommended and I already personally know two people with it I will send out the addy for you to check They say it is better than a feather bed and an egg crate thinggy Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 In a message dated 09/03/1999 3:01:17 AM Eastern Daylight Time, Lu1953@... writes: > What a wonderful idea.....go for it!!!!! do you realize of all the RP's that > would beg for a pillow like that when they are having the horrible ear pain. > > GO FOR IT! I'll buy your first one! lol I am the second taker then. Hey thinking of that though why not buy a foam form the size of the pillow you want and cut out a hole? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 09/04/1999 8:11:16 AM Eastern Daylight Time, Lu1953@... writes: > I do, I lay down awhile, back up walk to the kitchen, eat. walk back > to bed, 30 minutes and I am at it again...just restless > tell the truth is this the most terrible way you can think of to spend the night when everyone else is sleeping? It drives me wild/ I can't vacuum because of the noise, not that I really would Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 09/04/1999 8:13:43 AM Eastern Daylight Time, Lu1953@... writes: > well I want to know about it too! I hate my bed.....lol > LU I have an air mattrerss on my bed that constantly moves the air around. it is always plugged into the pump and it helps but if this thing wasn't so expensive I would have it next week. I just now checked the site out and it sounds terrific and my friends swear by it but the price Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 09/04/1999 8:14:55 AM Eastern Daylight Time, Lu1953@... writes: > GO FOR IT! I'll buy your first one! lol > I am the second taker then. Hey thinking of that though why not buy a foam > form the size of the pillow you want and cut out a hole? > >> > well somebody go for it! I think you would have a market for it. > ok wasn't it you that startd this conversation? what are you gonna do go for it or not? Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 09/04/1999 12:59:25 PM Eastern Daylight Time, Idigflower@... writes: > K LU, I'll make you one, and you can give your opinion on it if it works. > Send me your addrs and last name, so I can send it, I have to finish mine > 1st > so it will be about a week or 2. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 9/4/99 6:18:24 PM Central Daylight Time, AngieCATW1@... writes: << I can't vacuum because of the noise, not that I really would >> LOL I don't think that would be my pick of things to do either. lol and talking on the microphone would wake my hubby up its too close to our bedroom. I need to figure out something about that....????? lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 9/4/99 7:14:10 PM Central Daylight Time, AngieCATW1@... writes: << hey what about me? >> You are 1st On The List! I made 3 tonight! Wahoooooo, I have to figure out a cover for them? any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 In a message dated 9/5/99 1:54:57 AM Central Daylight Time, Idigflower@... writes: << Wahoooooo, I have to figure out a cover for them? any ideas? >> Something soft that feels good... you need to patent them... I bet you could sell them like crazy to all these wonderful RP patients. Hey, I can think of other uses for a pillow with a hole in it! lol I won't go there... lol Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 09/05/1999 2:55:01 AM Eastern Daylight Time, Idigflower@... writes: << You are 1st On The List! I made 3 tonight! Wahoooooo, I have to figure out a cover for them? any ideas? >> something soft like satin perhaps. Glad you are doing this cause I think I may find it very useful. My left ear wants to flare but I am saying oh no you won't and increased my pred but I think this time the ear may win out. How did you make them and what did it cost? ] Do you sew? Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 09/05/1999 3:01:11 AM Eastern Daylight Time, Lu1953@... writes: << I can think of other uses for a pillow with a hole in it! lol I won't go there... lol Lu >> hey Lu lets not go THERE! but boy can the imagination run wild. and nasty Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 9/5/99 6:09:05 PM Central Daylight Time, AngieCATW1@... writes: << How did you make them and what did it cost? ] Do you sew? Angie >> Yes I sew, I have my Great Grandmas Sewing Maching (1911) Singer~I use. the Down was the expensive thin, per Pillow $9.00, the Materieal was cheap $ 1.30 My 1 st 3 turnerd out GREAT! you know the sewing takes my mind off of things LOL, I think I will make more, but not to many people with " RP " lol to sell them to. I will send it in a few days, DO NOT SEND $. its a gift for all your help and support you give to me, god knows, I call you enough for info LO> Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 9/5/1999 4:33:31 PM Pacific Daylight Time, Idigflower@... writes: << I wont even tell you what my husband said when I showed him the finished product, But you would have laughed, lets put it this way, I have been to sick lately, so just imagine what he said! LOL (2nd best thing) >> Maybe I should get one of those pillows for " " . LOL Also sounds like your possible market may extend way beyond just the RP group. I dont think this is the appropriate time for suggestions about what to cover this pillow in. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 05September1999 6:30:00 pm Central Daylight Time, Idigflower@... writes: << I think I will make more >> Hi , How much I want (need) one - my left ear feels like it is going to flare. God , I hope not! Thanks, Mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 9/5/99 7:09:04 PM Central Daylight Time, ME2630@... writes: << How much I want (need) one - my left ear feels like it is going to flare. God , I hope not! Thanks, Mimi >> I dont want to charge you guys LOL, But it cost me $11.00, due to the DOWN (Goose) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 9/5/99 6:33:40 PM Central Daylight Time, Idigflower@... writes: << < I can think of other uses for a pillow with a hole in it! lol I won't go there... lol Lu >> hey Lu lets not go THERE! but boy can the imagination run wild. and nasty Angie >> I wont even tell you what my husband said when I showed him the finished product, But you would have laughed, lets put it this way, I have been to sick lately, so just imagine what he said! LOL (2nd best thing) >> ROFLMAO and still laughing ! Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 In a message dated 9/5/99 6:52:34 PM Central Daylight Time, Rlr1999@... writes: << Maybe I should get one of those pillows for " " . LOL Also sounds like your possible market may extend way beyond just the RP group. I dont think this is the appropriate time for suggestions about what to cover this pillow in. Roy >> I have not laughed this hard since the zuchinni. LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 1999 Report Share Posted September 6, 1999 In a message dated 9/6/99 12:05:50 AM Central Daylight Time, Rlr1999@... writes: < Our tomotoes are doing great also. Have a bunch of them. oh man, I wish I had some, I love tomatoes fresh from the garden. Roy, I am going to have to send you those cooking sites. Lu >> Quote Link to comment Share on other sites More sharing options...
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