sharralin
10-28-2006, 07:16 PM
Dear Friends, Wow! This is Cherie in Hawaii. It's been such a long time. We had a total computer crash way back. When we finally got back on line, I couldn't find the site again. Last week, desperate, I gave it another shot and here it is! And here you guys are! Nancy, how are your doggies? I have one now, Porky, he is a little love and has added so much to my life. Bob, in Maryland, boy have I missed you and your always up-to-date-info and wickedly funny writing! Nikki, Tracy, everybody, I am so, so happy to find you again. Great Big Thanks to John Lester! The site is so great! Fantastic new features! What a wonderful job!
Well, the desperation part. Last October I got the flu, despite the flu shot (wrong shot). My doc had warned me that the flu could really lay me low, and brother, did it! I was sick as a dog thru December, then got an ear infection that went nuts in May. It was the first ear infection of my life and naturally, it's on my TN side. There is only one ear doc on this island and he did absolutely nothing for me. Except vacuum the junk out of the ear, asking if my doc had me on antibiotics and telling me to keep it dry. The ear drum has ruptured several times and now there are more holes than drum. After eight months of antibiotics that did nothing except give me the mother of all systemic yeast infections, I asked for a culture of the ear. He said, "Oh sure, we can do that. There's certainly plenty of pus." Turns out I have an MRSA staph infection, resistant to antibiotics. I have trouble with sulfa drugs but in the end went ahead and took one. I have Kytril for nausea anyway, $50 a pill, of which I take 3 a day. It is usually used for chemo patients at two pills a day. The nausea is from the gastric bypass I had nine years ago. What a mistake that was. You know, just about everything wrong with me and now it's a long, long list; can be traced back to the wisdom tooth extraction I had in 1984 when I was only 28 years old. (I'm 51 now) That began the TN. Nine years ago I had gained 150 pounds, really! from Depakote and whatever else. I kept begging my neuro to change the meds and he always told me I had a choice, live with the pain or live with the weight. Well about the time I hit 300 lbs. my gastric reflux was so bad that my esophagus had bleeding ulcers, I had to sleep sitting up, and even then was blowing bits of broccoli out of my sinuses the next morning. I had to have hiatal hernia repair which was going to have me sliced wide open. So I had the brilliant idea --Well, hey, if I'm going to be cut open that much I might as well have a gastric bypass at the same time. What this is is actually surgically induced malnutrition. Most people end up gaining the weight back anyway, but are still malnourished because they remove the first section of small intestine which is where your Nutrients are absorbed. Further down the fat and calories are absorbed but the vitamins and minerals are not. What happens is that patients go home on a 300 calorie a day diet, or less, and of course they lose weight. Eventually, you begin to eat more. Once you hit nine hundred calories, which normally is a starvation diet, too bad for you. Your metabolism is changed and those cells grab on to every single calorie and won't let it go and boom, you are gaining again. Unless you get so sick that you can't eat or very little anything gets absorbed. Then you can stay thin. I am at my goal weight, oh boy. But let me tell ya, 130 lbs. of excess skin and flab does not look the same as my 130 pounds of muscle and tight skin when I was young! I look like a haggard old crone. Everywhere I go people give me the senior discount without even asking. My 21 yr. old son lives with me and when we go out, I get comments about what a wonderful grandson I have, to take me shopping, and do I live with him? Here the term Auntie is a term of respect for older ladies. It is proper for children and young adults to call me auntie, but when the thirty and forty year olds do it, it's because they think I am in my seventies. At first it was a bit disconcerting, but island culture really values old people and everyone is so nice and so helpful that I just gratefully accept it now, and have learned to relax and enjoy it. Old ladies can get away with a lot!
Sorry, I do digress. (Are you starting to remember me now?) Okay, ear infection: Now I have a cholecysteatoma in the back of my ear. It is a cyst or tumor, generally benign. But they need to be surgically removed to prevent it from going into your brain, cuz when that happens, you die. Well, my concern is the pain. The thing is growing and I am in agony. Went to my doc yesterday and begged him to up my pain meds. He did, and also gave me a scrip for Lyrica. Neurontin never really helped me, I hope the Lyrica will. Also, I am taking Namenda, have you guys seen the article on it in a recent TN (endthepainnow.com?)? I really can't tell if it is helping. The pain in my ear is so overwhelming that my usual phantom toothaches seem minor. Finally, I got a referral to a good ear doc in Honolulu. Scratch good, make that great! He did more for me in one day than the guy here did in eight months. I had a CT scan that showed it, and he has his own audiologist right there and she tested my hearing in that ear. This was a few weeks ago and at that point I still had some hearing left in that ear. Too bad if I lose the hearing, and of course, there's always the possibility that the surgery can make the TN worse. My regular doc said that in his opinion my TN cannot get worse, that it is as bad as it is possible to be. But one thing I have learned: no matter how much pain you are in, it can ALWAYS get worse. Oh, slight snag; none of the ear surgeons in Honolulu take Medicaid. Except that one guy has just left a group practice and is going out on his own and he has applied for Medicaid certification. Dr. D. (the GREAT ear doc) tells me this guy is really the best. So it's just a waiting game now. Do any of you have experience with ear infections with TN, especially ear surgery? Sorry for the long post, I have another long story but will save that for another day! I so hope that all of you have been doing really well and having lots of good days. Bless you all for being here! And bless John Lester for his selfless dedication and hard work! Love and healing to you all,
cherie (sharralin)
Well, the desperation part. Last October I got the flu, despite the flu shot (wrong shot). My doc had warned me that the flu could really lay me low, and brother, did it! I was sick as a dog thru December, then got an ear infection that went nuts in May. It was the first ear infection of my life and naturally, it's on my TN side. There is only one ear doc on this island and he did absolutely nothing for me. Except vacuum the junk out of the ear, asking if my doc had me on antibiotics and telling me to keep it dry. The ear drum has ruptured several times and now there are more holes than drum. After eight months of antibiotics that did nothing except give me the mother of all systemic yeast infections, I asked for a culture of the ear. He said, "Oh sure, we can do that. There's certainly plenty of pus." Turns out I have an MRSA staph infection, resistant to antibiotics. I have trouble with sulfa drugs but in the end went ahead and took one. I have Kytril for nausea anyway, $50 a pill, of which I take 3 a day. It is usually used for chemo patients at two pills a day. The nausea is from the gastric bypass I had nine years ago. What a mistake that was. You know, just about everything wrong with me and now it's a long, long list; can be traced back to the wisdom tooth extraction I had in 1984 when I was only 28 years old. (I'm 51 now) That began the TN. Nine years ago I had gained 150 pounds, really! from Depakote and whatever else. I kept begging my neuro to change the meds and he always told me I had a choice, live with the pain or live with the weight. Well about the time I hit 300 lbs. my gastric reflux was so bad that my esophagus had bleeding ulcers, I had to sleep sitting up, and even then was blowing bits of broccoli out of my sinuses the next morning. I had to have hiatal hernia repair which was going to have me sliced wide open. So I had the brilliant idea --Well, hey, if I'm going to be cut open that much I might as well have a gastric bypass at the same time. What this is is actually surgically induced malnutrition. Most people end up gaining the weight back anyway, but are still malnourished because they remove the first section of small intestine which is where your Nutrients are absorbed. Further down the fat and calories are absorbed but the vitamins and minerals are not. What happens is that patients go home on a 300 calorie a day diet, or less, and of course they lose weight. Eventually, you begin to eat more. Once you hit nine hundred calories, which normally is a starvation diet, too bad for you. Your metabolism is changed and those cells grab on to every single calorie and won't let it go and boom, you are gaining again. Unless you get so sick that you can't eat or very little anything gets absorbed. Then you can stay thin. I am at my goal weight, oh boy. But let me tell ya, 130 lbs. of excess skin and flab does not look the same as my 130 pounds of muscle and tight skin when I was young! I look like a haggard old crone. Everywhere I go people give me the senior discount without even asking. My 21 yr. old son lives with me and when we go out, I get comments about what a wonderful grandson I have, to take me shopping, and do I live with him? Here the term Auntie is a term of respect for older ladies. It is proper for children and young adults to call me auntie, but when the thirty and forty year olds do it, it's because they think I am in my seventies. At first it was a bit disconcerting, but island culture really values old people and everyone is so nice and so helpful that I just gratefully accept it now, and have learned to relax and enjoy it. Old ladies can get away with a lot!
Sorry, I do digress. (Are you starting to remember me now?) Okay, ear infection: Now I have a cholecysteatoma in the back of my ear. It is a cyst or tumor, generally benign. But they need to be surgically removed to prevent it from going into your brain, cuz when that happens, you die. Well, my concern is the pain. The thing is growing and I am in agony. Went to my doc yesterday and begged him to up my pain meds. He did, and also gave me a scrip for Lyrica. Neurontin never really helped me, I hope the Lyrica will. Also, I am taking Namenda, have you guys seen the article on it in a recent TN (endthepainnow.com?)? I really can't tell if it is helping. The pain in my ear is so overwhelming that my usual phantom toothaches seem minor. Finally, I got a referral to a good ear doc in Honolulu. Scratch good, make that great! He did more for me in one day than the guy here did in eight months. I had a CT scan that showed it, and he has his own audiologist right there and she tested my hearing in that ear. This was a few weeks ago and at that point I still had some hearing left in that ear. Too bad if I lose the hearing, and of course, there's always the possibility that the surgery can make the TN worse. My regular doc said that in his opinion my TN cannot get worse, that it is as bad as it is possible to be. But one thing I have learned: no matter how much pain you are in, it can ALWAYS get worse. Oh, slight snag; none of the ear surgeons in Honolulu take Medicaid. Except that one guy has just left a group practice and is going out on his own and he has applied for Medicaid certification. Dr. D. (the GREAT ear doc) tells me this guy is really the best. So it's just a waiting game now. Do any of you have experience with ear infections with TN, especially ear surgery? Sorry for the long post, I have another long story but will save that for another day! I so hope that all of you have been doing really well and having lots of good days. Bless you all for being here! And bless John Lester for his selfless dedication and hard work! Love and healing to you all,
cherie (sharralin)