tiredofdoctors

Yeah, I know . . . I told my husband (as we were loading bags of manure in our trunk) .. "I cannot believe that we are paying for cow $#*%!!!!" Was wondering if I should do anything to our privacy fences if I put the raised beds on the perimeter of the yard -- is there anyway to protect them from rotting? I don't want to destroy the fences for the sake of our garden -- although it might make good compost Speaking of which, I really had rotten luck this year growing my earthworms. I set the whole thing up the way I was supposed to, but the earthworms kept dying. I ended up just using the compost . . . Anybody know anything about earthworm farms????

I think that physician education is the answer. I know from experience that physicians don't want to be told ANYTHING, but if the information is proposed in the form of a question, then they think it's their idea. (very passive-aggressive, but works a lot of the time). I take in the information that I have gathered, I make sure that it is from a reliable source, is appropriate, and often highlight just the two sentences that they want to see. Then I ask if they would consider . . . . . it often works. A couple of times, it has sparked conversation with regard to the same illness/ disease process, and then they are even more receptive. I know that most of the time physicians don't like educated patients because they don't want to appear less knowledgeable than them, but in the right scenario, educating physicians is sometimes even easy.

Man -- in one day there is so much good information!! Patti -- you're not butting in -- welcome aboard! I would love to see a picture of your raised beds. Okay guys, need input -- I'm thinking of doing raised beds around the perimeter of our yard -- long, but fairly narrow (two to three feet) for my vegetables. Yes, No??? If so, any suggestions with how to set it up? It's the first time I've tried a raised bed for anything, but have to do SOMETHING to increase the size of my garden without expanding my current space. Any and all advice is more than welcome . . . .

Jackie -- thank you for the compliment -- I tried to convey (rage), anger, disappointment, but in a way which would be accepted rather than just glossed over. Unfortunately, to date I have not received a reply from either the publisher nor the agent. I will give them approximately three additional days, then ask them as to why they have chosen to ignore my e-mail. Will keep you updated . . . Lynne

I think, as patients, we strive to educate our physicians as best we can. I take in valid, appropriate information to my physician -- pulled from the internet -- medline or pubmed -- and often insist that he read it while I'm in the room. I have my list of questions prepared prior to my visit -- to any physician I see. I also think that, simply from our outcomes, they learn as well. My neurologist has learned from my experience -- he now has two patients with the same condition as I do -- but he was able to diagnose them MUCH earlier in their disease process, and long before they were at the disability level that I am.

That being said, it does NOT mean that they are the all-knowing, perfect practitioners that they think they are. They are FREQUENTLY wrong, and they are incredibly reluctant to admit that, or their ignorance with regard to disease processes. THAT is where the frustration lies the most. It is when they refuse to accept valid information or to notice outcomes that they become quite frankly, ignorant asses.

As a health care practitioner, I can tell you that I have had more than one argument with physicians. It did not make me popular with the physicians, but it was the best that I did for my patients. I have been screamed at, put in "my place", threatened and publicly humiliated, but it was all when I presented the physicians with valid, appropriate information. The threat of that is just too much for them -- how dare someone call attention to the fact that they were -- "WRONG??????" -- it just doesn't happen in their minds. When I told my sister's neurosurgeon that she was strong willed, he said "Well, evidently, it runs in the family . . . " I just said, "Well, evidently, my reputation precedes me." He knew, though, that I was going to watch him like a hawk. Thank goodness, he isn't too threatened by that, so she and he have a very good relationship.

That attitude, strongly above others, is the reasons that patients have such poor relationships with their physicians. And, that is why we have this fantastic forum in which we can rant and rave and tell each other how much we HATE the people on whom we must rely and trust to have our better interest in their hands. It is cold comfort, but comfort nonetheless, to know that other people have had the same awful experiences that we have had. It doesn't take away the humiliation we feel during our visit, the smallness which we feel when we are subjected to being ignored or discounted, but it DOES give us a place to vent, express our feelings with other people who have experienced the same, and do this without being judged. Sometimes, we can give each other a different perspective as to how we perceive what the physician said, sometimes we can just commiserate and let the person know that they're not alone. But, this is NOT the place for judgement. That is what I like the most about this forum, and I would be very disappointed if that changed.

yep . . . it was a great thing to hear for my cravings, but not for my hips! Also, M&M's are gluten-free, too -- but only the plain, peanut or almond

That is fascinating about the tonsoliths. I have neurologic damage from gluten -- I am celiac negative, but have had (in the past) a "highly" elevated anti-gliadin antibody level. I had a barium swallow, followed by a video swallow with a speech-language pathologist which showed marked slowed transit in the upper cervical segments of my esophagus. I have been told now that this is due to the slowly progressive neurological damage that was happening until I became gluten-free.

What a great family heirloom -- in addition to some special pieces thrown in. I love the idea of the antique aprons, too. I was lucky enough to inherit the tablecloths from my grandmother that no one wanted -- because they were "antique-looking" and not new! (Not that the cousins didn't take ALL the expensive antique furniture!!) I can't wait to see your runner -- it is going to be beautiful

Hey, me, too -- maybe we should start a new thread!

Claire -- thank you so much for those references. I'm going to send them to my neuro. I'm sure that there are a lot more of us who appreciate all your input, as well. I really appreciate you. .. . Lynne

As you can tell from my name, I'm a doctor-basher, myself! I guess my frustration lies two-fold: 1) I'm a physical therapist, and I used to own my own practice. I got so TIRED of listening and then diagnosing patients whose doctors didn't give a rat's hiney as to what they were saying, then yelling a ME when I had the nerve to tell the patient something different (my cousin was told she had rotator cuff tendonitis -- it ended up that she had two discs in her neck so herniated that she required immediate surgery -- the pain in her shoulder was referred, NOT due to tendonitis) then I would be told that I'm not allowed to "diagnose" -- and have to defend that, in our practice act, we are allowed to provide a "physical therapy diagnosis" -- those stories could go on and on and 2) as a patient, I am so tired of being shrugged off because the doctor couldn't figure out that antigliadin antibodies, in some patients with NO CELIAC, destroy the brain and retinas. I'm so tired of hearing that its PTSD. I have had that much traumatic stress to warrant that diagnosis. I was told that I had no specific gait pattern (other than I walk like a drunk and fall) and Johns Hopkins went so far as to falsify the results of the tests. Pretty scary stuff, huh?

I talked with a doctor who said that a study was done on the listening skills of physicians. It was an "on-site" type of study. It said that, on the average, a physician listens to a patient for seven seconds before interrupting them. SEVEN SECONDS! Perhaps that's because they double-book each 15 minute segment, banking on someone cancelling or not showing. Then, when all the patients show up, the physicians don't have time to examine you, much less listen to you. It's appalling.

Okay, I guess I'm finished doctor bashing! Sorry for going on and on.

BTW: I read the whole thread!

According to Tootsie Roll Industries, all their products are made gluten-free. (If you start reading the manufacturers, they make a lot of good stuff!)

Elisabet -- don't know yet about paste, but I'll check my recipes!

Jen -- the antique reupholstering hammer is WAY COOL But I don't think I'd use it at this point -- it's probably sturdier than anything made these days, but what a GREAT antique! BTW: For the dark grease on the stitching -- Dawn liquid. Its gluten-free, and they used it during the Exxon Valdez to de-grease the birds that were contaminated. The hankie runner sounds beautiful. I agree with Shirley -- can you send a digital picture? I can relate to Maggie's antics -- Destiny does the same thing. Anything I'm working on, I have to move her off of prior to continuing! If I'm tall kneeling while I'm doing something, she sits on top of my calves! I go to sit back down, and I almost sit on her!

Shirley -- a Celiac party sounds heavenly to me, at this point. I can't find any celiacs in this area -- evidently we have a really BAD support group. I don't have it in me to start a support group, but I would like to have a Celiac get-together -- I think it would be great to be able to eat everything that's at the party!

Shirley -- THANK YOU -- that sounds like great advice! And it certainly makes sense to me. Lucky cries for 30-45 minutes after Dave leaves to go to work -- he is inconsolable. Dave said that, when I was independently mobile, he would do the same thing with me. He said now, when Dave drops me off for my "independent night", Lucky just paces the house to the front door continuously. Being from two pack dog heritages, it makes absolute sense. Maybe, also, that's why he likes his bed really really deep around him. We'll start with the crate -- and the kong -- today. Thank you. And it's so good hearing from you

Lynne

Don't know ANYTHING about NAET -- I do know, though, that my MD practices kinesiology. Because I'm in the healthcare field, he and I banter about different things. I told him one day that I thought I was

"yeast-y". He said "You know, I think you smell yeast-y" (I said thanks a lot). I told him that it was pseudomonas, though. He said -- that's kind of rare -- I don't think so. He tried three different vials which he wouldn't tell me what they were. My arm dropped with only one -- pseudomonas. The other two were

1) an empty vial and 2) candida. Kind of convinced me.

I'm not a caregiver, but I know for sure that you're not alone, and your feelings are very justified. Sometimes the well is dry. I think that it's alright to let people know sometimes that you're just emotionally tapped out. (Not to mention physically -- I don't see how you do it) I know from experience about the doctor bills. (Review them carefully -- we went from owing $19,000 to one facility to $1,000) The bill collectors can call, they can ask for money, they can threaten, cajole, whatever -- but you can't squeeze blood out of a turnip. You're doing the best you can, and you can tell them that. I think that it's really important that you take care of YOU. Is there someone who can take over for a couple of hours for you just to get out of the house? Maybe go to a bookstore, have a cup of coffee and relax. During that time, however, don't think "Well, I SHOULD be doing . . . . . " Think of it as "I am doing EXACTLY what I need to do to take the best care of my family -- by taking care of me." Just some food for thought. I will keep you in my thoughts and prayers . . . I also think that your family is extremely lucky to have you. . . . I'm sending you {{hugs}} .. . Lynne

Hi Shirley!! It's good to "talk" to you again! Sounds like you've been REALLY busy! If there was any way at all to be up there at a get-together, I'd be there in a heartbeat -- it sounds like FUN!

I don't know what to do with our dog -- he has gotten used to me being home, and when I leave, he is determined that I will be punished. The problem is that he is part Basenji, part Australian Wolf Hound, so he is NOT a winter dog. We can't leave him outside, because he just doesn't tolerate the cold at all, and certainly doesn't have the coat for it. He is definitely a house dog. The funny part is that, prior to my moving in, Dave had another pure-bred Basenji, and they (the dogs) would wrestle rigorously all over the house. It was so bad that they almost knocked over the couch while I was sitting in it! We had to adopt out the Basenji for behavior reasons -- she shredded EVERYTHING of mine. She would pick it out of the hamper and shred it, she got a brand new pair of pants down off the dresser, out of the bag, and shredded them to pieces. She definitely had issues with me! Since she has been gone, Lucky (the mix) has become the quintessential lapdog. He is the biggest mama's baby you have seen! He has stopped the bolting out of the house that he used to do -- now he comes out to the porch, even to the sidewalk -- says hello, then comes inside with me. (I think he learned that from our little poodle -- she is DEFINITELY not a runner -- and I think she modeled that behavior for him) I do know that since I've gotten sick, and I haven't been able to go outside and run with him, he is really unhappy. I used to go outside and run all over the yard. The last time I tried that, I fell and was hurt pretty badly. When I do go out with him, I try to cheer him on, but he won't run -- he just stands beside me wherever I am - even if I try to get him involved. I put a training leash (50') around my waist when I was planting bulbs in the front yard during the fall, thinking that he could safely wander around. I had to sit or crawl, but it was no big deal. He sat RIGHT beside me, and wouldn't leave my side. Any suggestions you can give would be GREATLY appreciated.

Went to the fabric store today to get my material for my sheers -- I have been watching it for a year now . . . It had been $16 a yard -- DEFINITELY out of my price range -- and it was clearanced, clearanced, clearanced down to 1.20 a yard! I'm pretty happy about that! Now I just have to make the sheers, reupholster the ottoman, reupholster the kitchen chair seats, make the duvet cover & shams for our new bed (including the sheers & cornices for two windows) and plan my parents 50th anniversary party with my sister (June 16) and my daughter's wedding (August 5). No pressure, huh? I have a feeling that my bedroom things will be delayed for quite some time! The front window sheers have to be made because my husband feels that, when the drapes are pulled back, EVEN THOUGH I HAVE a window treatment on each of the individual windows, you can still see in the house, and he is afraid that someone will see that I'm home alone. So, in order to have some semblance of sunlight in our front windows, I'm making these sheers . . . . !!!! He's a little overprotective, but I'd rather him be like that than not care. While we live in a safe neighborhood, about three blocks down from us, there is a rather "seedy" apartment complex. One of the tenants set up a methamphetamine lab in the storage unit beside it about a year ago. It's a shame, really, because we have a nice neighborhood apart from that. Very home-town-ish. In fact, behind us we have a farm! The roosters crow in the morning to wake us up!

Well, I'd better quit babbling -- I have really missed you! Talk to you soon . . . . .Lynne

Oddly, my genetic testing is going to be with regard to this very thing. My grandfather had "parkinsonism" -- a phrase coined by a very old, questionably enlightened family doctor. The funny thing is, however, that my grandfather did not respond to Parkinson's medications, and did not have tremors. Parkinson's disease is a disease primarily of the substantia nigra in the middle of the brain. It secretes dopamine, which helps inhibit muscle contraction. If you didn't have dopamine, your muscles will be in contraction continually -- it is the neurotransmitter which calms them down. My father developed polyneuropathy very early in life -- and has definite gait deviations -- in the abscence of any precipitating factors (i.e. alcoholism (Werneke-Karsakoff's syndrome -- he's not an alcoholic). Neither of them had GI difficulties, and neither had vitamin deficiencies. At age 40, I began developing subtle changes in my joints/ muscles, and by 42 I was in a wheelchair -- no Celiac disease -- Anti-Transglutaminase and Antiendomysial antibodies negative, along with a negative biopsy (4 sites biopsied) in the small intestine. I do, however, have antigliadin antibodies. The neurologist said that my first test was high, the second one was extremely high. My understanding is that these antibodies cross-react with anti-perkinje cell antibodies (if you have them), and work to destroy the cerebellum (largely comprised of perkinje cells) and the retinas (have a large proportion of perkinje cells). Repeated MRI's have shown continued "fanning out" of my cerebellum (meaning that small portions are consistently being destroyed). My neurologist has begun to really research this. He said that the European countries are far advanced in comparison to the US with regard to neurological compromise in celiac and gluten intolerance with regard to the absence of vitamin deficiency. The UK has had one physician in particular who has extensively researched this -- and staunchly defends his position that neurological deficits are not particularly ALWAYS caused by vitamin deficiency in celiacs. Patients like me, who do not have celiac disease but DO have the antigliadin antibodies are giving him more and more credence. Hope this helps . . . . Lynne

I don't think it's pathetic at all. Don't be so hard on yourself. The entire process, in my experience, takes a long time to go through. I still grieve, still get my feelings hurt, still get really angry . . . . The fact that my family doesn't make any accommodations for birthday cake for me (birthdays are a big deal with our family) is extremely hurtful. I cry on the way home after every event. Last year, when I was first diagnosed (gluten ataxia), my docs wanted me to have counselling to help deal with the changes in my life. We discussed the food issue quite a bit. She told me to take my time . . . I just think it's natural for feelings like that to pop up -- sometimes when you least expect it. I probably would have cried over Olive Garden, too . . . Lynne

Welcome, Christine! Have to tell you -- Jen and Shirley are absolutely the Goddesses of information with regard to well, pretty much everything around the home! They have taught me so much -- and it's a really FUN thread!

Jen -- I am really excited about the craft room. The funny thing, though, is that I'm also the one in the house who likes tools, as well! My husband doesn't like to do that type of work around the house -- he'd rather do the laundry, iron, dishes (which I am COMPLETELY O.K. with ) The funny thing is, though, when he does work (on the toilet, the electric, etc.) he's really adept at it! Can't wait for it to be finished, though -- it's going to be really fun!

The dog definitely has unresolved issues -- I think he would DEFINITELY be a candidate for the show "Intervention" I think he's still made that there's estrogen in the house, now -- it used to be just "the guys"! My husband let him get by with a LOT, too! He had another dog, and he used to let them play however. They would run up and down the hallway -- at one point, they both ran into the end room door that was closed They also almost knocked the couch over -- with me in it. Me, having my little 3 lb. poodle just didn't tolerate it when I moved in, and he had to stop. Because of another reason -- the one dog got into a vicious fight with another dog -- we no longer have her. So I'm sure that the dog has serious issues with regard to my moving in!

Christine -- again -- any questions you have, Jen and Shirley are the people to ask! I just kind of "chime in" every now and then if I have a tidbit of information! Welcome!!!!!

Need to clarify -- the first new couch had the back coming off it -- so we had to have a SECOND new couch delivered -- it's here and in -- seems to be O.K. so far, but we'll wait and see! These guys give me the "ick" feeling, though, and the dog DOES NOT like them. They're still wandering around out front -- they should be gone by now. My scare factor if huge now -- three years ago, I was buff -- 12% body fat, and strong -- I could have taken out anyone who tried to hurt me or my family. Now, I can't even stand well by myself -- and I have NO muscular endurance -- so it really gets to me when scary people have to come in when I'm by myself. At any rate, wanted to clarify!

Hey Jen -- Have been getting the house "cleaned up and out" so that I can have my own craft room! Pretty excited about that. We got a new couch and a new bed, so I've been trying to decide what I'm going to do with the family room and bedroom. Our house is pretty small, so I want to try to make it look as big as I can. I never thought that I would be HAPPY that our maniac dog shredded the bed (the only thing that is scary is that he shredded it from my pillow all the way down -- eek) I don't know what his problem is, but it was the second time he had shredded the bed, he had shredded four fitted sheets, one pillow case and one pillow. Evidently he has some repressed anger. I'm not, however, going to pay for a shrink! I made some pretty intricate wreaths for my sisters-in-law for Christmas -- that was fun -- then spent after Christmas looking for bargains for next year -- I'm going to rent a booth at the "Christmas Exposition" here. Have gotten all my "stuff" organized now -- all the papers, etc. Also, have started scanning pictures for my parents 50th wedding anniversary -- my sister has a DVD writer & software, so they're going to take the pix (my scanner has a higher resolution than theirs) and prepare the DVD. Planning on preparing a scrapbook for each of my kids, especially since Ashley is getting married in August -- have a few good ideas for that.

My "neatest" project this Christmas was that I took a shadow box, put a picture of the view outside our room in Cancun when I took the kids years ago, put sand and seashells that I had saved from there in the bottom, but also put in the sunscreen which they laughed at me about -- I wanted to have sparkles, but didn't realize that 15 spf wasn't enough in Cancun -- was burned to a crisp -- but they started calling me "Suzie Sun Sparkles" -- I saved the lotion, and had a small bottle (corked) of it in each. I also put in a larger bottle of "fairy dust" -- it was the dust I scattered in a trail to the place where their tooth fairy money was when I couldn't manage to get the money under their pillow without them waking up, or if I overslept. On the back of the shadowbox, I wrote a note to them that I was sort of passing on the torch, and reminded them that I am now, and will always be, Suzie Sun Sparkles!

Well, the new couch guys are here . . .. need to go

Can't remember if wheat was on my scratch and/or injection tests. I know I had a BUNCH of food allergies -- including soy, so I avoid it. The MD said that I traded my environmental allergies as a child for food allergies as an adult. Will check and get back to you. Don't know if that had any influence on me developing antibodies to gluten.

Great site. Even greater picture! . . . Lynne

I don't have celiac, but have gluten ataxia. My aunt asked, "can't you just eat a LITTLE cake?" (after repeatedly and nicely deferring the cake) My reply was "only if I want to destroy just a LITTLE part of my brain."