Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Kvetching is new to me though. I am had such phlegn in lungs and head for the past three weeks that immediately it brought to mind something like in that category. Now I know bettter! Good word, and I hope you are feeling somewhat better with all the support I see has been written here for you. It is 60 degrees here today with sun. I now we are photosensitive but I am out on the covered porch today, all covered up of course as if it is the dead of winter, and basking in the warmth and knowledge and maybe, perhaps, spring, then summer, will not be too far off. This is a real upper for me. Love, Carol wrote: > From: Carol <carscott@...> > > Hi , > I'm so sorry that you are having such a hard time right now. <warm hug> You > are obviously in the " die-off " stage where we are worse before we get > better. I'm no pro about this stuff and I don't have a lot of " research " > advice for you, but I do want to tell you to not be discouraged!!! I've > been on the AP for 2 1/2 years and I've never seen any real improvement > either. My labs and my joints (I have RA) have just continued along getting > a little worse. It is very easy to get discouraged I know!! But this is > your only hope for a CURE and that's why I chose this path. I think I can > safely say that is why we all have chosen this route.....to possibly be > disease free someday. Ever heard anyone say that? Me either, until I got here. > > I could be taking a lot of different drugs that undoubtedly would make me > FEEL better. My " mainstream " rheumy's latest suggestions have been ARAVA > and lately (very persistantly) he has been pushing ENBREL at me. He says I > will feel so good if I take it I won't even recognize myself! After four > years of complete joint involvement and full blown RA that sounds pretty > good at times. I've already gone the methotrexate, plaquinel, and a lot of > NSAIDs route with him the first 2 1/2 yrs. after diagnosis which did > absolutley nothing either. I hate waking up every morning feeling like dog > doo-doo for years at a time! It's hard, and no one really knows how chronic > pain and a chronic disease effects a person unless they have been there. > But if I had my druthers, I would wish to be cured and not just squelch > the symptoms doing nothing about getting rid of the disease! So hang in > there......it really is a long haul and for some of us it is a much longer > haul than for others. But we have the others here to give us hope and to > keep gently booting us along. :-))) They graciously do that too, and I > think some of them actually like the " booting " part! <smile while I duck > and run>. This group is wonderful both from the aspect of all the > researching some do to pass along to us, along with the sharing of their > experience with meds, foods, diets and helpful little hints. (Not to > mention the very important moral support!!!) Or should I say the life > saving moral support?? <grin> > > So just stick close to the group, close like every day, ask questions, and > yes even Kvetching is not only allowable but invited!! <grin> I love new > words! Never heard that one either! And if you just want to " chat " > in general about anything and everything, join the apchat list. We have fun > over there too with lots of support as well. Hang in there and everyone > says......it'll be worth it, things get better!!!! <Whew! Good thing, > huh?!> <Big Grin> > > HUGS & Prayers coming your way, > Carol > > Take care, > > At 09:43 AM 3/4/00 +0800, Patten wrote: > >From: " Patten " <leslie@...> > > > >Just need to 'kvetch' for a moment. I've been on the AP for 6 months. I > >feel I've aged about 15 years--more achy, weaker, etc. > > > > > >Before I started the AP I had joints bothering me here and there, but my > >general vitality was good. Now my vitality is low. I get tired much more > >easily. > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > 1/975/0/_/532797/_/952200021/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 , Have you tried EFA supplements? You need to make sure you are getting enough essential fatty acids in your diet. I had stomach sensitivity at first and started taking one teaspoon of Aloe Vera GEL before each meal and before any antibiotics and have had no more trouble with my stomach. I added digestive enzymes as well after each meal. Seems to help a great deal . FYI. HTH Carol/Piney/Canada dermatomyositis oct 94 AP jun98 rheumatic Kvetching > From: " Patten " <leslie@...> > > Just need to 'kvetch' for a moment. I've been on the AP for 6 months. I > feel I've aged about 15 years--more achy, weaker, etc. I've had SI (low > back) problems from the arthritis for 11 years that I've kept under pretty > good control for the last 6 or 7 years. But I can't keep my SI from > flaring. It's definitely weaker and stiffer. > > I always had stomach problems on and off. Now it's more on, especially in > conjunction with the morning stiffness, which is worse. I take all the good > supplements--probiotics, garlic, but obviously stomach is very affected by > antibiotics. I'm sure my stomach being more wacky affects my SI. (Is > stomach problems and arthritis connected? I hear it can be.) > > Before I started the AP I had joints bothering me here and there, but my > general vitality was good. Now my vitality is low. I get tired much more > easily. > > I know it's a long term program and I'm committed to sticking with it. It's > really my only hope left. I have tried every possible natural therapy and > even Wyburn-Mason. It just is a hard road, especially when I haven't seen > any positive results yet, even a little, and I feel the drugs are hard on a > system that's never been used to taking them before. > > Thanks for listening guys. Sometimes you just need to kvetch. (for anyone > who doesn't know that word, you just experienced it. It is a good word to > add to anyone's vocabulary.) The support group is great! > > > AP Sept '99. Minocin MWF 200mg. Vioxx 25/day. Garlic 2x/day. Probiotics > 3-4/day. > Synthroid. Collagenase 3/day. > > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2122/0/_/532797/_/952192087/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2000 Report Share Posted March 4, 2000 What you are experiencing as far as the aching, stiffness, weakness and lack of vitality is quite normal. I got progressively worse for over a year after starting the therapy. As for your stomach problems, try taking a good brand of aloe vera. I'd suggest Aloe Master or Coats. Most brands found in health food stores are watered down and do not contain much aloe vera. Take 3 ounces 4 times a day. I'd take the antibiotic 15 minutes before one of the dosages of aloe vera. Aloe Master - 1-800-034-2563 Coats - 1-800-486-2563 Ethel Patten wrote: > > From: " Patten " <leslie@...> > > Just need to 'kvetch' for a moment. I've been on the AP for 6 months. I > feel I've aged about 15 years--more achy, weaker, etc. I've had SI (low > back) problems from the arthritis for 11 years that I've kept under pretty > good control for the last 6 or 7 years. But I can't keep my SI from > flaring. It's definitely weaker and stiffer. > > I always had stomach problems on and off. Now it's more on, especially in > conjunction with the morning stiffness, which is worse. I take all the good > supplements--probiotics, garlic, but obviously stomach is very affected by > antibiotics. I'm sure my stomach being more wacky affects my SI. (Is > stomach problems and arthritis connected? I hear it can be.) > > Before I started the AP I had joints bothering me here and there, but my > general vitality was good. Now my vitality is low. I get tired much more > easily. > > I know it's a long term program and I'm committed to sticking with it. It's > really my only hope left. I have tried every possible natural therapy and > even Wyburn-Mason. It just is a hard road, especially when I haven't seen > any positive results yet, even a little, and I feel the drugs are hard on a > system that's never been used to taking them before. > > Thanks for listening guys. Sometimes you just need to kvetch. (for anyone > who doesn't know that word, you just experienced it. It is a good word to > add to anyone's vocabulary.) The support group is great! > > > AP Sept '99. Minocin MWF 200mg. Vioxx 25/day. Garlic 2x/day. Probiotics > 3-4/day. > Synthroid. Collagenase 3/day. > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2122/0/_/532797/_/952192087/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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