tiredofdoctors

Pish-Posh . . . . SCIENCE????? Not on Saturday in Rachelville. Only fun and games . . . and altoids, of course

Now that you have a potential man for her, you may be reinstated!!!!!

Yeah, but once the word gets out how talented us Rachelvillettes are with our Altoids, pretty soon there will be population explosion and for every one woman, there will be 20 men......

Does that mean I will have to give a step by step demonstration on the proper technique?

Granted, we Rachelvillettes are TALENTED . . . but step-by-step demonstration on the proper technique got us in to WAY too much trouble a few months ago . . . . .

And I have the STRAIGHT husband . . . . it's LISA'S husband who isn't as straight as he used to be . . . .

Oh, what have I done? Next time I'll know better than to open my big mouth about something so simple as a breath freshener.

You said it, NOT me . . . I simply CAPITALIZED on it!!!!!!!

Hugs to you, Andrea,

Lynne

Karen -- I am laughing so hard I can't BREATHE!!! Dave is simply shaking his head . . . .

In case y'all don't know . . . I'm in a wheelchair . . . hence, "piston on wheels". Good thing I ordered new batteries for the wheels two weeks ago!!!!!!! May have to order new brakes, too!!!!!

Karen, you are the BEST

Okay, here it is, as related to my by my neurologist(s):

Perkinje cells, which are the primary component of the Cerebellum, rely on gliosis for their metabolism. Because of that, they have a protein which is remarkably similar to Gliadin in their RNA. When your body begins the autoimmune process, and continues to include Antigliadin antibodies, they begin to mistake the proteins on the Perkinje cells for Gliadin . . . thereby destroying them. Because they are destroyed somewhat randomly, it causes numerous "short-circuits" in the entire neurological system -- as the cerebellum controls virtually EVERY bodily process.

Additionally, the retina contains a proportionally large amount of Perkinje cells -- which may cause the person with high Antigliadin antibody levels to begin to develop night blindness and/or color blindness.

Having all of these, I believe that this is the truth. Because they thought that I had MS, I, too have endured spinal taps, MRI's which are too numerous to count, multiple EMG's -- although it's funny -- my neuropathy is so bad that I don't feel anything during the tests -- I guess that's an upside to having no feeling in your lower legs(?). I have autonomic dysfunction presently . . . which includes decreased intestinal motility (think: impaction every 7-10 days), no sweating . . . but the fluid stays in my body, so I have ankles the size of calves -- maybe even thighs, some days because my brain doesn't tell my vessels to bring it BACK UP to my lymphatic system, blood pressure that can go from 90/ they can't get a diastolic # --even the MD -- to 165/105 within a course of 15 minutes, without compensation in my heart rate, and what they thought were panic attacks . . . . which we now know is my heart rate skyrocketing for no apparent reason. When this becomes a permanent condition, and I don't have days that things are somewhat "normal" (aka, I actually sweat), then they will call it Autonomic Failure. All of this because the Perkinje cells in my cerebellum were destroyed by gluten -- and the antibodies were undetected for WAY too long . . . .

Such is life, and I go on from here . . . but if I can speak at any functions, write any articles to submit to journals for publication, whatever it takes to get the word out, I will. Without waxing philosophic, I DO believe there is a reason for this happening to me. I am working at finding out what that reason is. One, for sure, is that I am VERY secure in my marriage. My husband could have bolted at any time. I even OFFERED to divorce him so that he wouldn't be the "bad guy" . . . and he said the most loving, kind things that I have ever heard. So, I know that, we're in this -- together -- for the long-haul. There are other things that I must learn, and am pondering that on a daily basis. I don't like this disease -- in fact, I hate it -- but I refuse to let it take the enjoyment out of my life. (Sorry to get philosophical -- I seem to be doing that more & more these days . . . didn't mean to inflict it on you guys)

Hugs to you,

Lynne

Madame President: I feel the need to clarify a few items.

1) I make ONE MISTAKE, and all He** breaks out . . . granted it was a HUGE mistake -- that will teach me not to stroll through Rachelville BEFORE I've taken my concerta. Obviously, I need to concentrate and read, not SCAN . . . . and will NOT make that mistake again. My poor, dear, wrongly accused of being gay husband. . . . Do you know how many Altoids nights I'm gonna have to go through to repay him for that????? May as well nickname me "hummingbird"

2) I was not the first one to introduce the T-shirt idea . . . . if you scroll back, oh, say, 50 posts(maybe more), you will find that SOMEONE said that we could have T-shirts that said something to the effect of Someone . . . . . and all I got was this t-shirt. THAT ALONE would constitute ADVERTISING for Rachelville . . . and would get CNN interested. MY shirt simply stated that I did not want anyone who wasn't a resident to bother me. I'm saving my altoids for the Rachelville MEN. Did we all hear that . . . Hunky, Burly MEN -- Not women -- although my husband may have a little difficulty with me "spreading the love", so to speak.

3) Tic-Tacs will NEVER do . . . although their previous jingle was "Put a Tic-Tac in your mouth and get a BANG out of life" . . . . enough said

I think I am finished; however, should I find any additional discrepancies, I will contact you immediately. Thank you for your time and consideration . . . . I remain, Sincerely, Town Physical Therapist and resident expert in Foot in Mouth disease

OOPS!!!!! Thought the cops were women!!!!! My bad . . . Okay -- no Gay in him --- trust me on this one

So, now that we have THAT straightened out . . . no pun intended . . . . on to the next problem:

I think that we need to have a "gaited" community, possibly. OR, we could have an official Rachelville tour guide -- and tours are only conducted ONE WEEKEND per month . . . so that our lives are not interrupted. THEN, on that weekend, we could all wear our official t-shirts proudly. And they would NOT be for sale to anyone who is not a member of R'ville. Those people would have to get the previously stated, "Someone I love visited Rachelville and all I got was this t-shirt" . . . . . that would keep in check!!!!!

Hey -- my husband is a Naval Architect -- and all around good guy (Catholic, too . . . could help defend the poor Catholics who are getting attacked on another thread . . . he, and the geese). At ANY rate, he could DESIGN any ships, etc. which are needed in R'ville . . . his name is Dave. He is also VERY good at telling people EXACTLY what he thinks about their opinions -- that they are best kept to themselves as far as he is concerned, because he doesn't care . . . when someone is causing "difficulty" . . . He would, however, become distracted (without admitting it) by the beautiful cops!!!!! We could use him . . . he's a keeper!

And, BTW: I want an OFFICIAL Rachelville T-shirt . . . one that says, "Rachelville: Don't hassle me, I'm a local" and has the Official Rachelville Trophy proudly displayed . . . .

Sadly, some of it just comes because I have a genetic predisposition to being a smart-aleck!!!! It's on BOTH chromosomes . . . . proven scientifically (almost). Sorry for the aside . . . . . Lynne

Hi Shirley --

I have a "spider-web" looking thing on one of my plants. HOWEVER, none of the catapillars are on that plant, nor near that tent. They haven't congregated, and they are pretty content just staying on one little part of a plant.

I looked up tent catapillars (found out -- we call them "bagworms" here -- that was why I didn't recognize that!) and those are NOT what I have. If you have an e-mail address posted on your bio, I'll send you a picture of the little guys. The tent catapillars we have here have little fuzzies on their underbelly . . . these don't, and they don't have the coloring that we usually see. I can remember my dad torching the tents when I was a kid . . . thanks for a GREAT memory . . . I had forgotten that!!!

So, you had to mention the raspberries and whipped cream, eh? Thank you very NOT!!!!! Actually, thank you very MUCH. I'm salivating just thinking about it . . . and remembering someone very dear to me in my childhood. I called her "Mammaw" -- she was my next door neighbor. As a skinny little kid (hard for me to believe now . . . ), she was intent on putting some pounds on me! Her cobblers, combined with matching ice cream each summer night, are some of the best memories I have of my childhood . . . I can remember, after supper, playing outside, then hearing my name called . . . pretty softly . . . but I always heard it! I'd go over, and she and her daughter's family (she lived with them -- I called them Aunt Louise and Uncle Ben) would be on the back porch, and Uncle Ben would be churning the ice cream. They were my family, as well. Mammaw even made a gingerbread easter village for me one year . . . because she made them for her other grandchildren -- and I was one of them, as well. Oh my, great memories . . . . .

Hoping you have a great weekend . . . snuggle Sheba (again) for me! (Also, forgot -- I have the BEST picture of Destiny to send you . . . she fell asleep in her Panda Puffs . . . she woke up after I had finished posting, and had one stuck -- to the top of her nose!!!)

Hugs and Hugs to you,

Lynne

Dear Bernice,

After reading your posts, and having been involved in a couple, I have come to the conclusion -- right or wrong -- that somewhere, or sometime in your life, you must have been horribly hurt by someone or something. When I read your posts, all I can read is pain. It makes my heart hurt for you. Whatever has happened in your life to cause you such pain, I wish had never happened, and am so sorry that it did.

In my experience, the people who cloak their messages in "honesty" or "humor" (I am guilty of that), are often the ones who are in the most pain. I read your posts and know that, if it were me that were posting those messages, I would be using humor -- making all laugh -- in hopes someone would recognize that I am actually hurting so badly.

I hope that your life comes to a point where you are able to heal from ANY hurts that have occurrred in it.

With regard to the posts on the forum at large, I think Wayne Dyer, PhD, said it best: "If you have to choose between being right and being kind, choose kind."

Hugs to ALL of you,

Lynne

It's pretty late and I don't know if I've read the entire thread correctly, so I'm sorry if I'm chiming in incorrectly --

lynnacim, I received an entire packet from my dietician about Freeda vitamins. They're gluten-, yeast-, blah blah blah free! I ordered the multivitamins, the CoQ10, and the sublingual B12. They were a little price-y, but not too bad. It's funny, though, and I've mentioned it before . . . they didn't have the strong "vitamin-y" smell that other vitamins I've purchased have. They have a surprisingly MILD smell.

Also, a LOT of Clinique products contain gluten. Bobbie Brown, MAC, Prescriptives, Clinique, L'oreal and Jane are all subsidiaries of Estee Lauder. (I think that's all of them, but I'm not sure . . . would have to look it up) They won't guarantee that their products are gluten-free, because they don't ask for ingredients from their suppliers.

I have a huge list of Neutrogena products that are gluten-free which was forwarded by the company. I HAVE gotten concerned, however, because they said "wheat free" at some point. Red flags went off pretty quickly.

I believe Beverly (BERNESES) said that Lumene products are gluten-free, and are only available at CVS. I tried one of their face lotions, and it felt GREAT -- light, not greasy, and no break-outs.

Bare Escentuals Bare Minerals make-ups are gluten-free, for the most part. Some members have mentioned individual lipsticks that contain gluten. Also, their face lotions contain gluten, as well as their mascaras. Don't know if the gluten molecules can permeate mucous membranes (i.e., inner eyelid, conjunctiva) so I'm not sure if that one is a big concern, unless you rub your eyes a lot . . . .

With regard to a diagnosis . . . if your body FEELS BETTER when you are gluten-free, it speaks volumes. Trust what your body is telling you. Remember, doctors only "practice" medicine . . . .

Shirley, if I was at your house, I would be HUGE!!!!! Sounds yummy!

Congrats (in a hushed voice) on your victory . . . girls rule!

Going to look up tent catapillars, but I'm not liking the tone of what I might find . .. . . . doesn't sound promising, either, I can tell 'ya. So, if you know what to do to get rid of the suckers, albeit pretty, please let me know . . . . because my sage is doing really well this year, and I would LIKE to be able to dry it . . . along with the Cilantro and Parsley, which, evidently, I am very good at growing, because I didn't plant ANYTHING in the "spontaneous garden" this year, and yet, herbs! (Annual herbs, at that)

BTW: Thought you guys would like this one . . . planted my freesia and plumeria . . . one plumeria sprouted, and I THOUGHT I had all this freesia . . . OH NO . . . the freesias are JUST NOW coming up -- these HUGE things I have in the entire area where I had PLANTED the freesia is full of WEEDS!!!!!!! I DEFINITELY have to read up on these things prior to purchase!! The calla lilies that caused the fall two months ago . . . out of 15, 3 emerged. Hmmmmmmf. My green thumb just doesn't have its mojo working this summer! I do, however, have a couple of BEAUTIFUL Sumatra lilies! (thought I'd end this post on an "upside" )

Jen -- I'll "talk" with you tomorrow . . . . .

Shirley -- if you're not exhausted, same to you . . . . give Sheba a snuggle for me!

Hugs to you both,

Lynne

That was funny!!!!! Good luck . . . . I'd still pester the heck out of the GI doc's office! Sometimes, it's just a matter of principal.

I'm glad your mom is Okay, but wouldn't it be nice to have some answers? Don't want to say, "Sorry your mom isn't sick", but I was hopeful that the doctor would have delved into this with a little more zeal. Good luck to you . . . and take care of you . . . . Lynne

Wow . . . I stay away from one thread, and look what I miss . . . .

Everyone has their own personal belief system. Some are remarkably similar, some are remarkably different. Some include God, some don't. Some people are religious, and some are spiritual. When you get down to it, however, we are all individuals, deserving of the benefit of having our belief systems treated with respect. It amazes me how many a war has been started in the name of religion.

If you look at the universe scientifically (no I am NOT a Christian Scientist), after studying WAY too much physics, it almost undoubtedly confirms the existence of a higher power. In the scientific world, everything lends to chaos. Therefore, there seemingly needs to be a higher power that brings it all together . . .

After reading all these pages and all these posts, it appears that there is one common thread that binds everyone here . . . we're all struggling with a disease that is so horribly difficult to manage. Catholic, Lutheran, Episcopalian, Methodist, Hindu, Buddhist -- whatever. This thread is about trying to manage to fit into the lives of the people with whom we have a particularly unfortunate commonality (celiac) a way for them to celebrate their faith and participate in their religion, without having the side-effects from this awful disease. This is not about who is right, who is wrong, who is good, who is bad. This is about helping our friends, acquaintances, maybe even enemies, I don't know . . . find a way to successfully fulfill yet another part of their lives that Celiac has taken away. This disease takes enough of our lives . . . I would like to think that, as adults, we can work together to help some members get a very important part of their lives back -- regardless of what you believe. I have often been accused of being naive, and if that is the case, so be it. I would like to think that, regardless of anyone's belief system, that we would ALL be able to work together to find solutions to enrich the lives of our fellow celiac board members.

I wish you all the success you can find . . . . . . you deserve that so much.

Lynne

Tasha - I am so glad. It is SO frustrating when you can't get past the front desk, then when you DO, you have difficulty with the doctor listening to you with more than half an ear. Please keep me informed about your mom's condition . . . . I'd like to know about her test results, if that's not intrusive.

Well, Vincent, sorry 'bout your luck . . . because, well, I've been quite the "rule abider" these days . . . have kept my hiney out of hot water for oh, about what, three weeks now? A record for me, my dear. A record.

I think I want Shirley's life . . . but I don't know if I'd have the stamina that she has!!!!!

Jen, you're doing better than me . . . I tried hitting golf balls on the driving range with my dad & my son . . . I was TERRIBLE!!! I finally said, "This is a stupid game, anyway." Talk about laughing hysteria . . . .

Shirley -- I tried to crochet once . . . I am so anal-retentive, what was supposed to look like an afghan ended up looking (and feeling) like an outside doormat! It was the most rigid, tightly woven artifact of yarn you have ever seen!

So, do you guys know . . . catapillars that are NOT fuzzy, but are smooth, with yellow and black, maybe some red spots here and there . . . are they BUTTERFLY catapillars or MOTH catapillars? If they're BUTTERFLY -- I'm excited, because we have a bunch of 'em in the spontaneous garden. Moths . . . well, we may have a problem. ALSO . . . I had my first REAL ladybug -- not the brown kind -- an actual RED ladybug with black spots -- I was so excited. Of course, it probably means I have aphids, as well, but what the heck?? It was a REAL ladybug!!!

ROFLMAO!!!!!!!!! It's PERFECT!!!! See, not only are you a Goddess, you're TALENTED, as well!!! Not going there, Karen. NOT going there.

Okay, it's not much, but here's what I know about it:

Marfan's syndrome is a genetic (anomaly?) which produces many different signs and symptoms, and doesn't affect each person the same way. The typical "Marfan" patient is very tall, usually referred to as "lanky", and the hallmark "look" is that their arms are proportionately longer than their body and often their legs.

The syndrome itself produces hypermobility throughout the body -- sometimes not in the MUSCLES as much as in the connective tissue -- ligaments, vessels, things of that nature. They are almost always hypermobile, some can take their hands, clasp them in front, and without releasing them, put them behind their back. With regard to the vessels, they do tend to have more vericosities (this includes hemorrhoids, which are vericosities in the rectum -- okay I said it, rectum), have more heart valve issues, including the tricuspid valve (a little more uncommon than the Mitral valve -- which is pretty common) and most importantly, the Abdominal Aortic valve/vessel - - that has a tendency in some Marfan's patients, to develop an aneurysm. If they suspect Marfan's, usually they will do a trans-esophageal (echocardiogram, I think), to rule out any hint of aneurysm. If caught early, it is very "fixable", and is not of great concern.

Okay . . . that's it. Correct me if I'm wrong . . . everyone else does

I'm envisioning Karen, on an Oscar Meyer float, big bun and all , with a necklace made of mini-Altoid tins connected together . . . and some really ummmm evocative, maybe, costume. I agree with the Ice Cream Man theory, and she could do one of two things . . . wear one of those "Change-maker" things around her waist (too mechanical, maybe), OR, as part of a Rachelville is a Wonderville theme, she could simply toss Altoids out to the crowds (all except the Cinnamon . . . ouch) . . . . She could have a crown, and wear the long white gloves, and wave like parade princesses do . . . . And, should someone become harmed in the mad rush to see the Altoid Goddess on Parade, then I can patch 'em up, and send 'em back out!!! Yeah, THAT'S the ticket!!