Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

For Lynne - Tiredofdoctors

mouse

By mouse
in Introduce Yourself / Share Stuff

Recommended Posts

Mtndog Collaborator
Mtndog
Posted

Sorry Armetta- Bump again. My bad. I sent Rachel a copy of my letter too.

I want to do something for our Lynne in the meantime. I'm really worried about her.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 112
  • Created
  • Last Reply
mouse Enthusiast
mouse
Posted
  • Author

bump

2Boys4Me Enthusiast
2Boys4Me
Posted

Armetta,

I'd like to help you out, but I don't really know much about Lynne other than the great advice and great sense of humour and optimism she displays on the boards despite her poor health. How can I help? Is a brief note about how her humour and optimism shines through enough?

Turtle Enthusiast
Turtle
Posted
Armetta,

I'd like to help you out, but I don't really know much about Lynne other than the great advice and great sense of humour and optimism she displays on the boards despite her poor health. How can I help? Is a brief note about how her humour and optimism shines through enough?

That is perfect!!! Just write a brief note about everything you described above and get it to Armetta!!

2Boys4Me Enthusiast
2Boys4Me
Posted

Armetta, I just pm'd you. I hope it's good enough.

Lisa Mentor
Lisa
Posted

Hay everyone:

I'm trying to help Armetta and she has sent me some awesome letters. I do not have all of them, but I will to compile the cover letter. A task that I am not sure I am up for........but will ask for your help.

When you submit a letter to her, please add your name, address and contact phone #'s if you feel comfortable doing this. I expect that all letter will need to be verified by the "crew". (If you don't feel good doing that, you can use your "user name on Celiac.com").

I think all submits, Metta, would like to list their names in support of Lynne. :D:D

Thanks, Lisa

Is that correct Mouse? :)

Hay everyone:

I'm trying to help Armetta and she has sent me some awesome letters. I do not have all of them, but I will to compile the cover letter. A task that I am not sure I am up for........but will ask for your help.

When you submit a letter to her, please add your name, address and contact phone #'s if you feel comfortable doing this. I expect that all letter will need to be verified by the "crew". (If you don't feel good doing that, you can use your "user name on Celiac.com").

I think all submits, Metta, would like to list their names in support of Lynne. :D:D

Thanks, Lisa

Is that correct Mouse? :)

Better yet, send as an attachment in printable copy, so we don't have to retype it. By the way, I don't understand computers and they don't understand me. :blink:

mouse Enthusiast
mouse
Posted
  • Author

thanks linda for the great note. it is perfect as you covered some things others have not.

lisa, that is correct. i will be putting everyones name on the bottom of the cover sheet as we are all nominating lynne. those that have not sent me addresses, phone numbers, etc. if we get to second base, they will have my contact number and i will get it to them. some of you already did that.

but in all future letters, please do as lisa suggests

also angel_jd1, you did not sign your letter at all. if you still have it, could you add your name, etc. and resend.

anybody who did not put address and phone number down, if you would to email or pm me, that would be great as i think we are going to get to home plate on this - thanks to all of you.

lisa and i will be doing the cover letter - with her doing the typing - he he. i don't think they want to receive a letter all in lower case.

thanks everyone and lets keep this ball rolling.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mouse Enthusiast
mouse
Posted
  • Author

i received this email from lynne. she saw the doctor and the fall was bad, but not the worse that was feared.

Okay, so here's the update:

Went in for my Fall "Brake" check-up -- Ha! -- and the results are pretty much what I had expected.

All of the disc bulges and herniations have increased in size; two of them have herniated to the point that they are pressing into the "thecal sac" pretty much, but NOT occluding it.

The L5 nerve is still encroaching on the L4 nerve root, only worse, and there is a tear in the annulus of the disc at L5.

I've also developed an "hemangioma" ("gioma" meaning growth, "Heman" meaning blood vessels) one one of the vertebrae. Evidently that is from repeated blows to it.

Still have the bruise from when I was talking to you and fell!! What, two, two and a half weeks ago? It measures 9 inches by 4 1/2 inches now. Can you imagine how big it was then?????!!!!! That was a pretty bad one, I guess.

All in all, though, I dodged another bullet! Given the new diagnosis of the Ehler's Danlos, it would make sense that all the popping that my back does (every time I move in bed, whatever), could cause a whopping facet syndrome. Also, the doctor increased my Lyrica to three times per day, and I hadn't been taking it prior to seeing the doctor. Hence, the HORRIBLE "pins and needles" pain in my feet. The doctor said that I could / should see a neurosurgeon about the tear, but I'm just not interested in surgery. Why do you see a surgeon? To have SURGERY. No thanks. I've been cut on enough. When it gets worse (they don't heal), I'll start having epidural blocks to reduce the inflammation. Won't have any surgery until it blows out completely! I have already lost critical reflexes because of the Celiac (won't go into detail -- VERY embarrassing), so there's not a WHOLE lot more a herniated disc can do. Seriously.

Going to go back to bed -- have my cold medicine now! My luck to get the flu on top of everything. It's Karen's fault. She gave it to me through the phone. Even she thinks so!

mouse Enthusiast
mouse
Posted
  • Author

bump

Turtle Enthusiast
Turtle
Posted

When you talk to Lynne again, let her know we're thinking of her and wishing her to feel better soon!

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Oh my gosh. I don't know what to say. Thank you SO much, EVERYONE. I have read this thread, and just sat here crying.

I held back telling all the things this stupid disease has caused, because I didn't want to place my burdens on anyone, and I didn't want to scare any newbies that would read it. Also, everyone is struggling so hard with their own manifestations of this disease -- some are fighting SO hard -- that I thought I needed more to be supportive than disclosing. Somehow, I think maybe I need to apologize for that. I had my "Susie Sun Sparkles" mode on, and simply shut out the part of me that is struggling. That has been my "MO" for a lifetime. When you don't hear from me, you know things are bad. I have a friend who, if I haven't talked with her, will say, "What's wrong? What happened? I haven't heard from you in three weeks." I just go into my cave :ph34r: so that I won't burden anyone else with what's happening. I think it stems from my dad's family -- they all wanted EVERYONE to know EVERYTHING that was wrong with them. I really didn't like it. I decided early on that I wasn't going to be like that. I guess I went overboard, huh?

I can't thank you enough. I just don't have the words to say how grateful I am and how overwhelmed that you guys would do this. I often tell newbies that they will never find a better group of people anywhere -- boy, am I right. :D

You are all amazing. I can't fathom that, with all you are all struggling with, that you would take time out to do this for us. I am so blessed. I have had the best people sent to me. I used to believe in coincidences -- I've kind of ruled that concept out. I think that people are sent to us for a reason, sometimes to learn a valuable lesson, sometimes to be able to help them, but this? This is beyond what anyone could ever believe or expect, much less ASK for. Thank you from the bottom of my heart.

Dave and I are filling out the papers (rough drafts) today, in fact, have already started making our revisions. I can't imagine having a home that would be accessible! Wouldn't that be GREAT????!!!! I could cook again like I used to (I have so many gluten-free recipes I want to try). I could take a BATH whenever I wanted to. Although Karen sent me -- VERY early on -- a handrail that has been a lifesaver. Literally. I was getting ready to fall backward, grabbed the rail, and was able to not hit my head on the tub or wall. Isn't it AMAZING that she would sent that to me? She barely KNEW me and yet, she sent it from CANADA, no less. When I think of the possibilities that having an accessible house would have, I get shivers! I could SCRAPBOOK again! I have my Cricut machine that I haven't even gotten to USE! I could make the wreaths, door trees, centerpieces again that I used to donate for the Festival of Trees and Lights for Kosair Children's Hospital -- they would get BIG BUCKS on my stuff -- go figure! I would love to have a room that is handicapped accessible -- that is big enough that I could have people who are handicapped come in and we could all scrapbook. The stores around here just don't think about that kind of stuff. It would be so NEAT! I could make my jewelry again -- I used to donate that to charities, too. I still have the findings, the semi-precious stones --- would that be AWESOME or WHAT? I could have kids come in with their parents -- I have so many kid craft things. They could just come in and have FUN! There would be ROOM for them! The possibilities are endless. There would be so much I could do to help other people who are struggling -- if only for a couple of hours, make their lives a little more fun, a little more light. I HAVE all the stuff! Goodness knows I'm a hoarder.

Also, I could make Dave's life easier. He works so long and so hard at his job. They have had some real changes in the past two years -- a lot of them very good -- but he was promoted to a management position and there are some real up-sides; the down-sides, though, are that he has a LOT of pressure placed on him to make sure his staff is on-task and he is working much longer hours. Then, he has to come home, arrange for SOME kind of dinner, do the laundry (he gives me the baskets and I fold!), wash the dishes (we don't have a dishwasher), take care of the cars, my wheelchair, the maintenance of the house (I used to be the handywoman of the house) and the outside of the house as well. Then, we go through the mail . . . can't tell you how much medical we just wince at when it comes in. And yet, he does it all without complaining. He tells me that I contribute to this home simply by living here. Can you believe that? He is so amazing. I would love to be able to take all that off his hands. For him to be able to come home again to a meal that I've cooked -- especially his favorites -- Oh my Gosh! He would be SO happy! I would love for him to be able to do the things that he likes to do -- but doesn't have TIME to do now. I would love to make his life better. That would be the greatest gift of all.

I know that I rambled on (and on and on), but I am so EXCITED about the idea of this! Oh the possibilities . . .

You guys are simply the BEST. I can't thank you enough, ever. I am so grateful and so thankful. We'll send this in and see what happens, huh? Maybe they'll bring you guys in so that you can watch them knock down our house! If that was the case, I wouldn't want to go ANYWHERE -- I'd want to stay HERE to be with you!!!!!!! We could have gluten-free-Fest!! We already know that there is SO MUCH room on the build line that hasn't been used -- they could knock this sucker down and build a house that in that I wouldn't FALL all the time! I can't imagine -- a life without BRUISES? (I think the bruise count today is 182)

Thank you so much. You amaze me. And Armetta -- well we all know how amazing she is. I am just so blessed and so grateful that she chose to be my friend. I wish everyone could meet her. She is more unbelievable in person than she is on the forum. She is beautiful, funny, witty -- with a GREAT sarcastic sense of humor sometimes -- especially when she's trying to help drag me out of the shower -- and yet she is so compassionate, so giving and so genuine. What you see is what you get. And what a gift that is. Metta, didn't even know you had started this thread until you told me about it. What can I say to you? There are no words to express what I'm feeling. You are simply the best.

Love and Hugs,

Lynne

Guest nini
Guest nini
Posted

we love you Lynne, you are our rock! {{{{{{{{{{{{{HUGFEST}}}}}}}}}}}}}}}}

CarlaB Enthusiast
CarlaB
Posted

:wub::wub::wub::wub::wub::wub::wub:

And, I'll DEFINATELY be there if you get a new house!!!!

AndreaB Contributor
AndreaB
Posted

Lynne,

We are all here for each other. Thank you for sharing.

It's ok to not be the one who makes the jokes all the time.

:wub:

tiredofdoctors Enthusiast
tiredofdoctors
Posted
And, I'll DEFINATELY be there if you get a new house!!!!

We'll have a gluten-free margarita toast!!!!! Wouldn't that be GREAT??? I would love it if I could see all my friends from the board. How awesome would that be?

Lynne,

We are all here for each other. Thank you for sharing.

It's ok to not be the one who makes the jokes all the time.

:wub:

Andrea,

Thank you. That is a gift. My role and function throughout my life has been to be the peace-maker -- to make everything alright. And I do it through jokes and diversion. Thank you for the gift of not having to do that always.

Love & Hugs,

Lynne

CarlaB Enthusiast
CarlaB
Posted

Lynne, you still have to tell jokes .... but when you're not feeling well, it's your turn to let us cheer you up, it's not time to hide. We ALL get down sometimes! ;) You don't have fair-weather friends here who only want your jokes!

tiredofdoctors Enthusiast
tiredofdoctors
Posted
Lynne, you still have to tell jokes .... but when you're not feeling well, it's your turn to let us cheer you up, it's not time to hide. We ALL get down sometimes! ;) You don't have fair-weather friends here who only want your jokes!

Thanks, Carla. Don't worry, I'll still tell jokes -- it's part of my "being"!!! That, and having trouble simply follow me wherever I go. . . :blink:

But, from now on, if something bad is happening, I'll say so. Not a LOT, mind you -- can't do that -- but a little.

But if they knock this house down???? WOOOOOOOOOOOOHOOOOOOOOOOOO!!! Are we gonna celebrate or what?????!!!!!!!!!

Lisa Mentor
Lisa
Posted

Lynne,

I just got home from work and saw that you are her. I do hope that you are feeling better and in not tooo much pain.

Hang in there. You know, beyond every dark cloud.........there is a rainbow!!!! :) Let's go find one. :D

Lisa

tiredofdoctors Enthusiast
tiredofdoctors
Posted
Lynne,

Hang in there. You know, beyond every dark cloud.........there is a rainbow!!!! :) Let's go find one. :D

Lisa

Hi Lisa -- It's GREAT to talk with you again! I'm up for finding it!

You couldn't have a rainbow if you didn't have the rain!!!! It's been kind of a bad week, (okay, it's been a LOUSY week, but still) I am so blessed. I know that things are going to be fine. There's a plan for me . . . just haven't found it yet. It's like a big treasure hunt!

Love,

Lynne

happygirl Collaborator
happygirl
Posted

Lynne,

Happy to see you. We are all thinking of you and pulling for you. I can sense a rainbow coming!

Love,

Laura

Judyin Philly Enthusiast
Judyin Philly
Posted

Lynne glad to see you posting.

Laura (happy girl) your mom looks so familiar to me and has everytime i see a picture of her.

wasn't she from DC area.

know that couldn't be it tho.

judy

AndreaB Contributor
AndreaB
Posted

bump

Turtle Enthusiast
Turtle
Posted

BUMP

mouse Enthusiast
mouse
Posted
  • Author

i am sick today and no i was not glutened. probably not the flu either, but some ongoing problems that i am seeing a doctor about on tuesday. the awful thing about being sick is we were finally having some friends and their kids to dinner today. i had set the table yesterday and made the rolls and put them in the freezer to bake before dinner. i had to cancel. that is such a bummer.

if anyone has any questions, please PM momma goose (lisa).

if you are sending in a letter, please send it direct to happy girl (laura) as she is a computer expert and is putting everything into the right form. PM her to get her email address.

carla and rachel, i have not received your letter. if you decided not to do it, please let me know. it is really OK if someone does not want to write a letter, because they just don't know what to say.

i am now off to the shower, clean pj's, my teddy bear and back to bed.

AndreaB Contributor
AndreaB
Posted

Armetta,

Hope you bounce back quickly.

Enjoy your soak and nap and I hope you feel refreshed after both.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.