tiredofdoctors

Having had multiple canines, I find that the talent of being able to train them is a gift from God and extremely rare! Certainly NOT run of the mill, but yet, doesn't that make her VERY special??!! Also, a financial wizard in the family is a great gift! I think it's true -- each child has different talents (and different quirks ), and you need to love and appreciate each individually.

I sense that both of you share my philosophy of not confusing your kids' lives with your own! Like I said, I'm highly supportive of them, encourage them, have bought more instruments than I'd care to admit (we tend to be musical), but I'm strictly behind the scenes. When they were in high school, there were these moms who were there EVERY day. They kissed-up to the directors like you wouldn't believe. This one mom was convinced that her daughter was THE BEST singer ever produced. And boy, did she let EVERYONE know it. I got so tired of hearing it. I kept thinking, do you not have anything that you can do? Long story short, when my daughter got into (by audition) a state program that her daughter didn't, she let the entire school know how outraged she was. She went so far as to tell them that her daughter was a much better vocalist than Ashley, and she didn't know HOW she managed to get in. (Like I have so many influential contacts --that's just it -- I didn't go to the school, etc., and I am basically a peon!). It was rediculous! Again, though, my evil twin did get some sick pleasure from her frustration It was nice to see the big suck-up so frustrated

Oh well, need to reminisce (sp?) a little more . . . . . Ahhhhh . . .. .Talk to you soon!

Dear Claire, I hate to say it because it sounds unreal that I'm stating this about you NOT having celiac disease, but I am so sorry. I was hoping that this whole thing would have been gluten intolerance --- period --- and you could be assured that no further progression would happen as long as you were gluten-free. I can't imagine what you're feeling right now. I'm hoping that you can get some further testing done and get some real answers. This whole thing is frustrating, at best, yet participating in a study at NIH, to me, brings of the promise of answers -- finally. To then have the cards tossed up in the air, again, must have been awful. From what I know about you from here, I know that you won't give up, so I'm not even going to tell you to do that! Just know that, even over the internet, you're not alone, and we're all praying for and supporting you. Take care of yourself . . . . Lynne

Hey guys -- the good news with the gazebo thing is that it is already decorated -- really nicely! (These people have kind of weird standards -- it's O.K. to have a pond that is really grose -- but the gazebo has to be extraordinary -- winter is lavishly Christmas-y, and spring/summer is professionally landscaped) I think I may have a Santa & Pets Day.

Jen -- your cookie exchange sounds fantastic!!! It has got to be just so much fun. I loved the idea about telling stories about the cookies -- especially the one about your grandmother. I'm really sentimental about things like that, and I think it makes for a really "heartfelt" experience for everyone. My daughter is 19 -- she's a sophomore in college. She's a Speech Language Pathology major, but is minoring in vocal music performance (hopes to treat vocalists after graduation). She auditioned for the "stellar" performance group (called the Chorale) and made it last year, met a really NICE guy who sings in it, and is SOOOOOOO in love. It wouldn't surprise me if they got married next summer. (The reason I put "stellar" in like that is that, unlike a LOT of moms that I've come across in the music realm -- my son plays jazz saxophone(btw, he's 23) -- I'm not a "show mom". Don't get me wrong -- I'm very proud of their talents, and go to all of their performances, but their talents are just what they can do -- it's not who they are -- and I think a lot of moms can get that confused. I've met a few who are way too into it, maybe living through their kids, and they're kind of obnoxious! Sorry to anyone who reads this who is like that. No offense meant, but I just think that it's not my life, it's theirs.)

Boy, did I get off the subject! At any rate, both kids love to cook so I think it would be a really good experience for all of us.

Okay, now I AM bragging -- guess what my son asked the other night? He asked me to come up with a list of ingredients which I can have / can't have (I told him I'd make some copies of lists in my books), and he wants to start experimenting with recipes to come up with gluten-free foods for me! He is an exceptional cook (doesn't bake much, but can really cook) -- and I can't WAIT! Isn't that neat, though, that he wants to do that? He said it really quietly -- we had a birthday again, and I couldn't have either the cake nor the ice cream, and he felt awful -- and he said that he wants me to be able to enjoy really good food that's not going to poison me. I'm pretty happy about that!

Well, poor, pitiful almost-bald Destiny is staring at my computer with laser beam eyes -- I think she wants me to let her sleep. I would love to, also, if my joints would behave and stop hurting so badly that they wake me up! Talk to you guys soon . . . . Lynne

For those who have talked me on the subject of ataxia, I have posted a new topic dealing with the results of my genetic test - Kimball Labs.  Look for title Ironic.  Claire

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Hi Claire -- can't find the post "Ironic" -- does it take awhile for them to appear? I am really interested in your findings. I hope you got some answers. Correct that -- I hope you got some definitive answers and not any vague information that can happen. My opthmalogist says that pathologists' national flower is "hedge". Will keep looking . . . talk to you soon . . . .Lynne

Love the changes to your party name! I kept thinking, "What is a stitch and jerk party"? . . . .Will take a digital picture of poor little destiny -- who is staying under the electric blanket in order to keep from shivering continuously -- to show you how pitiful she really looks. She still isn't happy with me! Jen -- how did you start your cookie exchange? My daughter and I think it's a really neat idea, but don't quite know how to start it, what to tell people (how much, etc.), who supplies boxes, etc. . . .would love to know how you set yours up. Wouldn't it be fun to do a pets with Santa like Shirley does? I think that's great. In my parent's neighborhood, they have a little gazebo that they do kid pics with Santa -- I'm wondering if I can get someone to dress up and "borrow" the gazebo to do pet pics! Wouldn't be the same as at home, but right now our house is in NO SHAPE to entertain (even pets!) Well, better go -- Destiny is giving me a dirty look because my laptop is in her way! Talk to you guys soon . . . . Lynne

Open Original Shared Link

I was trained in a pilot program for OT/PT. I came to that as an undocumented Recreation Therapist - long story there. The Occupation and PhysicalTherapy training has a lot of overlap so this was a wonderful concept- one well received in the Rehab community. However there was a lot of politics in the national organizations that ultimatelysabotaged the whole idea. Most of us just had to chose a way to go. I stayed with OT and eventually wandered back into Recreation Therapy - mostly for senior citizens and severely handicapped younger people.  I got my Masters after that and then worked in a private organization that did training workshops - Relaxation Techniques, Grief Counseling etc. We worked mostly in hospital with Blood Pressure Clinics and also did a lot of inservice training for nurses and other professionals - police etc.  Funding dried up and I left health care and went into a high tech company as Administrator of a Training Dept.  Claire

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Hey Claire -- I hope you received my response to your questions -- I feel really awful about my answer, because I didn't understand that you guys COMBINED PT/OT. I thought you meant that it was the same argument that we have here. I I have offended you, I am really sorry. I re-read my response, and it was my misreading the article. (One of the dangers of reading at night when I'm off Ritalin -- my brain jumps from A to E to M . . . ) I apologize if I have in any way insulted you -- I think you are so intelligent and have been such a help to me in so many ways.

Jen -- thanks for the link -- I'm sending it to my friend, hopefully getting some airtime (other than the bird flu -- hot topic here)! Talk to you soon . . . Lynne

I have found that my ADHD meds are much more effective now that I've been gluten-free (or semi-gluten free, considering my meds and my make-up contained gluten) My concentration is much better, my voice modulation is CERTAINLY better, and my memory seems to be better as well. Looking forward to when gluten is entirely out of my life to see what happens.

Your poor babies! I'll bet the cat was glad when the dog dug it out of the snow! We had our first cold snap here -- no frost yet, though. Unfortuntely, I tried to groom our little teacup poodle myself. Must not have had enough Klonopin on board, and my tremor kicked in. I had to shave her (almost) bald. I told my husband that she has a Halloween costume -- she's a Mexican Hairless! I have preemie "Onesies" that I put on her during the winter, so at least she won't be cold! (just had to cut an opening for the tail!) She is NOT, however, very happy with me.

Hoping to have a night with sleep tonight. The rheumatologist gave me new NSAIDS for my hips -- hoping it will help tonight. Going to try to go to bed now! Talk to you guys soon . . . . Lynne

When you find out for sure, I'll write, too . . . Lynne

From what my endocrinologist told me, PCOS is typically a result of hyperinsulinemia -- the excess insulin affects particular organs, the ovaries being a biggie. I have PCOS -- have had it for years. The bigger picture, however, is that hyperinsulinemia is the precursor to Type II Diabetes -- it indicates that your body's cells are becoming resistant to insulin, therefore your pancreas is increasing the production of insulin . . . . . . and the circle continues. May want to see an encocrinologist just to be on the safe side. Lynne

Okay, I feel somewhat better I was thinking -- does your ROOF cave in each year from the weight?!? I will say, however, that our "big snow" of '95 presented as 24" in a 5 day period! With regard to my evil twin -- I take ritalin to keep her mouth shut! Unfortunately, I learned at 39 that I've had ADHD my whole life. It SURE explains those report cards I always thought that "neighborly" meant that I was a good neighbor. I didn't know that it meant I couldn't keep my mouth shut! As an adult, it was an even greater problem. When I was in a crowd, if a group of people were talking and I had a thought about the subject, I knew I had to say what I was thinking, or else it would be gone! So I interrupted people --a LOT In addition, telling your boss to "bite me", then when he asks "what did you say", you say "read my lips -- B I T E M E" -- let's just say it's not real conducive to keeping your job I think the meds are the "stop button" that God forgot to install from my brain to my mouth. My son loves when the ritalin wears off -- he says it's the old mom whose back. He think's its funny when I blurt out what I'm thinking. I'm pretty much happier with the idea of "Ready, Aim, Fire", vs. "Ready, Fire, Aim", myself But, when the "stinker" in me (aka my evil twin) is ready to come out, not having ritalin in my system is ideal! At any rate, better go -- the regular me is going shopping with my husband! Talk to you soon . . . Lynne

I really like this idea! I like the emphasis on Gluten-Free awareness -- I am VERY sympathetic to celiacs, but I am only gluten intolerant -- I have gluten ataxia. (Did I just say ONLY gluten intolerant?????) At any rate, I think that it's important to have Celiac awareness month, because it is a much larger problem than most people think (or don't think is the actual problem). We need to get the word out. Can you guys direct me to a website where I can get some statistical information? My next door neighbor and friend is a reporter for the local news here -- now that Breast Cancer has had its race for the cure walk/run, they're dry for health news right now. If I can present statistics (fairly soon), there's a good chance they'll run it.

I can't get back to the former messages without losing what I've written so far (I'm hating my computer right now), but whoever does the promotional items, you're bound to be creative! I think you should take the ball & run with it. Depending upon cost (& our resources -- sick people are poor!) I'll buy as many as I can and pass them on to local health food stores, etc. In fact, I'm wondering if chains, such as Whole Foods Market and Wild Oats would start carrying them -- it certainly would help to promote the fact that they have gluten-free products if they were at the cash registers. Non-celiacs would pass the info onto their celiac friends -- and maybe even start to become a little more informed. AAAAAAHHHHHHH! (that's the chorus singing the angelic sound) For that matter, even Kroger co. Our Kroger has a LOT of gluten-free products in their health foods section. I think this is a really good idea.

Talk to you guys soon . . . . Lynne

Hi Shirley -- 8 FEET OF SNOW????? Our city shut down for an entire week one year when we had 24 inches of snow. Seriously. I live in Louisville, KY -- we may get one good snowfall of about 2-3 inches, but that's it. The problem with getting "black ice" is that we will get sleet and/or freezing rain, then the ground is already so cold that it immediately turns to ice. Even when we do get snow, we typically have 2-3 inches of ice beneath it. To make matters worse, Louisvillians can't drive in rain, much less snow. Honest to goodness, if there is a 20% chance or greater of 1" of snow, the grocery stores are packed with the seniors getting milk, bread and eggs. I'm talking lines 14-15 people deep. It's craziness -- but kind of funny. I hate planning on shopping and then hearing that there's possible snow -- those old folks want to get in, get their groceries, and get home before the "blizzard"! They are downright NASTY! They'll ask you in the produce area if you're going to look there long, they'll move your cart, or bump you out of the way -- it is a ZOO! I usually sing "Winter Wonderland" -- it grates on their nerves! Then I walk outside, and if it's snowing, I sing even louder. Either that, or "Let it snow, let it snow, let it snow"!!! Okay, it's not a nice thing to do, and is downright passive/aggressive, but it is REALLY fun! Now that I've disclosed WAY too much about my evil twin, I had better get off here! Talk to you guys soon . . . Lynne

I think having your own farm IS expensive. (and yeah, right, the simple life!)When you consider what you pay out for seeds, equipment, etc., then calculate the amount of time you put into it, it's a LOT cheaper to buy it at the grocery! Somehow, though, it's not the same. Even my little garden -- and I mean LITTLE -- yields veggies and herbs that are just better It's also pretty nice to cut fresh lemongrass to add to tea -- it also cuts down on the amount of sugar I use per pitcher (down to 1/4 cup per 2 quarts). My son is a really good cook -- he comes over, steps outside and kind of overlooks the herbs -- I then ask him -- need more? He smiles .. . . Are your winters brutal? We are sometimes mowing the lawn a week before Christmas! Our worst problem is Black Ice. We don't necessarily get SNOW, but we get an icing. It freezes on the roadways, making them just look dark. OHHHHH WRONGGGGGGG. My car did a 540 degree turn on the expressway one night -- I was just thankful that there was no traffic at the time. The road was fine, and then I hit the black ice -- you fishtail for awhile, but on that mess, there's no recovering -- the funny thing is that in a mile or less, it will be gone. Weird. Well, bedtime is beckoning! Talk to you soon . . . Lynne

Hey Claire -- I did my rehab in a facility which had a recreational therapist; I thought she was indispensable. We have the same PT/OT thing here -- it's a bunch of S**T. I have a good friend who is an OT. There is a lot of overlap, but each brings to the table their unique perspective. She and I see eye to eye on so much -- she works with kids, as did I. What KILLS me is that she managed to parlay a position for me to work with her co-treating -- what a team we would make - I just need to get well and I'm there -- there I go again with the denial. I stongly believe in the aspect of rehab which you chose. I took an enormous amount of psych classes which weren't required, including the psychology & dynamics of death and dying. Without "tooting my own horn", that is what I liked the most about my office; it was calming -- it was decorated, not sterile -- one room had a soft ocean theme, the women's health room had Cassat pictures of mothers & children -- all the fluorescent lights were covered with fabric to soften the room -- I found that in that environment, my patients were not only able to relax, but so many of them were able to grieve, as well -- often very openly -- and often I would grieve with them. It was very conducive to physical recovery. Man, I could have used your talents in my office! That would have been awesome. I think that is what is the most difficult about this disease -- I feel like I've been robbed or assaulted. I know that I made a difference -- and I don't know how to make a difference now. O.K., enough whining!

George: Thank you so much for the info with regard to the genetic testing and for the braintalk forum info. Inasmuchas I am concerned with finding out the absolute cause of this, I am so concerned for my two adult children. (23 & 19). If I test postitive for a genetic predisposition, I want them tested immediately. I don't want them going through this. Regardless, though, I know that I have antigliadin antibodies, and must remain gluten-free for life. At least I've "smartened up" to that extent!

Talk to you guys soon . . . . . Lynne

Thanks for the confirmation -- It's funny, I thought that my "rash" was seasonal --and it is -- because I start using different products in the summer than in the winter!

Thank you guys so much. I did the same thing with regard to my meds -- I don't necessarily trust everything I read. I called the companies . . . also, Abbott Laboratories was by far the most thorough, and told me to call back in 9 months because their newest survey from their suppliers will be completed -- and they want to make sure that my Synthroid has remained gluten-free.

Bronco -- I love Sun Tzu -- I was introduced to "him" in 1989! Thanks for the support.

Kaiti -- with regard to hair sprays, etc., how do I know what's safe? Also, I feel kind of stupid , but what is the Delphi list? How do I access it? I've seen it mentioned on a lot of threads, but don't know how to get there.

JerseyAngel -- I'm going to get the Purex tonight -- thanks for the heads up on the Gluten Free Bible, too. I am at heart a skeptic, don't believe everything I read, and your answer confirmed it. -- you, too, Kaiti -- thanks.

nettiebeads -- Thanks -- it's good to know that I will probably always make mistakes -- I am pretty hard on myself, I guess, but I just think I should have known better.

Thank you ALL!

Shirley, that sounds unbelievably peaceful. My husband and I always dream about moving like that. With the electric fence thing -- I can't feel them, either -- I just thought there was something wrong with my nervous system! My brother-in-law is always saying -- WATCH OUT -- I touch them, but nothing happens. Now I want to get a y-shaped willow to see if I can water witch! What a neat gift. I know what the blade you are talking about -- I can't believe that your husband had to mow the whole field with that -- it's exhausting work! My ex-husband's family had a tobacco farm -- "come 'baccer season, we all chipped in -- the kids don't go to school, and we all just go in the fields and cut 'baccer." Yuck. That stuff is NASTY, even when it's not being smoked.

Jen, with regard to the change in income, my brother-in-law said it was quite an adjustment. The income from slaughtering the cows helps, but my sister-in-law does it only so that people can have healthy meat -- she makes very minimal profit from them. One sister-in-law said "With this mad cow disease, you can CAPITALIZE on your meat -- you can get a PREMIUM!!" The other sister-in-law just looked at her quizzickly (sp) and said, "What?" She repeated it, and then got the response "I do this so people can be healthy. Yes I want to make some profit so that we can keep the farm up and buy the things we need, but I don't want to bleed people so that they can be healthy." See what I mean about being incredible? They live very frugally, and they are kind of "earth people" -- they have a washer, but they don't have a dryer -- they have clotheslines outside and inside! Their house is an old farm house -- but the improvements they have made to it are great. They grow a full garden, and they get together with their neighbors from all around and exchange foods for canning and freezing. Their one neighbor makes the greatest hot mustard you have ever eaten! They certainly had an impact on their finances, but they have just taken it in stride and really simplified their lives. They're really happy, too.

I've been reading The Gluten-Free Bible along with all of the labeling threads, and I am so disappointed. I have been glutened the whole time I've been starting this. (I've been gluten-free 3 1/2 weeks+). ALL of my make-up contains gluten, my hair conditioner contains it, and two out of five of my medications contain gluten. I'm going out tonight, buying Bare Escentuals (I used to use it, ironically), Neutrogena hair, face and bath products which are safe (they are e-mailing me their gluten-free list), gluten-free toothpaste and throwing all the other garbage out. I'm soaking all my make-up brushes in gluten-free dishwashing detergent -- they're Bare Escentuals brushes and not cheap, so I'm hoping that this will be O.K. -- we really don't have the resources to buy new ones. I'm throwing out my toothbrush and make-up bag & buying new. I've phoned my doctors' offices -- the name-brand of one my meds is gluten-free, another med, we're going to have to find an alternative. WHAT ELSE HAVE I MISSED?????? What about fabric detergent and/or softener? I feel like such a failure -- and I have really tried hard -- I have stuck to the diet religiously. I feel just awful. Any help anyone can give me, I appreciate it. I REALLY need it.

Just an FYI: I spoke with the representative with Roche (Rausch) Pharmaceuticals -- I take Klonopin for spasticity in my lower extremities. Because we have mandatory "generic", I'm waiting for a response from that company. However, back to my original point : At this time, all pharmaceuticals produced by this company are made with starches which are NOT derived from any gluten-containing ingredients. The rep said that it is a good idea to check when you are prescribed one of their brands, but as of now, ALL are gluten-free. Their Consumer Services number is 800-526-6367, and they are VERY prompt. I left a message last night, and they have already called me this morning.

Also, where is the Braintalk forum? I would love to take a look -- I've already learned so much from this, it would be nice to see a site which is strictly neuro. Also, Claire, what type of rehab professional are you? I feel the same way -- I was the practitioner, now I'm the patient. (I used to MEASURE people for wheelchairs -- now I'm in one)

Hey guys -- what optimum timing! I just received a call notifying me of a cancellation in the rheumatologist's office where my neuro doc referred me, so they're bringing me in early. I've seen him before, so he will order any and all lab work with little convincing. He's a great guy. If you would, could you please list the genetic tests for which I should ask? I've had Anti-Gliadin (IGg, IGa), Anti-Transglutaminase, Antiendomysial, and the whole rheumatology antibody work-up. The only genetic testing I've had so far is HLA B-27. Since you guys are very knowledgeable, I've also had Hashimoto's thyroiditis (had to have my thyroid removed it was an "ingrown" goiter vs. "outgrown"). Don't know if there are any ties with that and my gluten sensitivity. Don't get me wrong, I'm concerned about me, but my biggest concern at this point is that I have two kids, 23 and 19, and if this is a genetic disorder, I WANT THEM TESTED IMMEDIATELY. Any help you can give me, I really appreciate.

CeliacMe: Good Job! We only have Outback here, but it's inspiring to know that you've made these companies make positive changes for their consumers. I'm not great at "taking a stand", but I think you've changed my mind! Keep up the GREAT work, and I'll see if I can get up enough courage to start in there with you!

Yeah, my sister-in-law is pretty incredible. My brother-in-law is the same. He used to work for the Environmental Protection Agency, but lost his job when the Reagan administration discontinued his entire department. He has master's degrees in geology and chemistry, I believe, and she has a masters in Environmental Science. After the entire department was disbanded, they really didn't know what to do. They decided to move to the country, raise a farm, and he would teach high school Chemistry. They're just amazing people. My sister-in-law was the one who taught me how to compost, and we have been laughing about my foibles (sp?) with the worm farming. It's good, though, because she keeps me motivated - my gardens are chemical-free because of her (with the exception of talcum powder and cayenne pepper!) Wouldn't it be great to live like that?? With regard to the divining rod, I guess sometimes the old ways are the best ways. Who knew????? (except my sister-in-law)

Wow! What great experiences! My aunt had a farm in a more rural area of Ky -- they had baby piglets. The momma was not really happy that they removed a couple of them for me to hold. Boy, are they cute, though!

My brother-in-law & sister-in-law have a farm in West Virginia. They raise cattle (beef), goats and chickens. My son explained their farm to my neurologist, and he told me that their beef was the only meat he wanted me eating! My sister-in-law is brilliant. She told her husband that she was going to drill for a spring and create a well. He got REALLY nervous, and told her that it was more than she thought it was going to be, that it could potentially take months to tap into a productive spring, and they couldn't afford to have the equipment on-site that long. She got an old-timer to come out with a divining rod. He found one site, but said it wasn't strong. He found a second site, said "dig here". The equipment was on the site one day, they drilled a spring that produced 50 gallons per minute! The water is something like 99.89% pure. My brother-in-law laid pipe and rigged a system to irrigate 5 pastures. The cattle are grass fed and rotated every other day. They receive only the antibiotics they NEED, and get NO hormones! It is the best beef you've ever tasted, and its pure. (They also don't use chemicals on any of their vegetation). My sister-in-law makes me laugh. She doesn't like chemicals of any kind, so she found chickens which lay colored eggs. No kidding. That way she doesn't have to dye them at Easter They are pink-ish, rose, teal and light green. It cracks me up. (no pun intended)

It sounds like you guys had a GREAT time while your kids were growing up, and now are having a different kind of great time enjoying the land. That is so neat. Whenever you feel like reminiscing or updating farm goings-on, feel free to post -- I love hearing about things like this! Lynne