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

Recommended Posts

mouse Enthusiast

the doctor thinks she has more crushed discs from the bad fall last week. she gets an MRI tonight.

this is also a bump.

i can't wait until i can use two hands to type. i hope i don't forget how LOL.


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



Celiac.com Sponsor (A8-M):



  • Replies 112
  • Created
  • Last Reply
happygirl Collaborator

armetta,

I just got home from johns hopkins and had an endo/colonoscopy....hadn't been on in the past two days so I just saw this. will it be ok if i write it this weekend?

Laura

mouse Enthusiast

laura, i just sent you an email. thank you for doing this.

i hope your tests went well and that you are not in too much discomfort.

also turtle, i sent you an email. and i appreciate your effort on behalf of lynne.

happygirl Collaborator

haven't received a PM or email yet

Turtle Enthusiast

No e-mail from you yet on my end either....

My letter is ready....so e-mail me at the e-mail address I PM'd you so I can send the letter to you! Thanks!

happygirl Collaborator

got it...thank you. xoxo

mouse Enthusiast

thanks for letting me know laura that you received it.

turtle did you finally get yours. i am going to bed now, but i will check in the morning to see if you got it.


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



Celiac.com Sponsor (A8-M):



Turtle Enthusiast

YES!!! I got it!!

Everything should be in your e-mail inbox when you check it in the morning!!

Mtndog Collaborator

i am SO in! If you want I can post my letter here to give other people ideas as I've never actually met Lynne in person, but somehow that doesn't seem to matter. :D She's crazy amazing and I shudder ti imagine how fabulous she is in person!

Just checked the website for Extreme Makeover Home Edition (ABC) and what they want to know if you are nominating someone is: What is you family's CURRENT situation and how does it affect your family's home? Why do you need a makeover? What makes you deserving? What makes your situation unique?

Rachel--24 Collaborator
i am SO in! If you want I can post my letter here to give other people ideas as I've never actually met Lynne in person, but somehow that doesn't seem to matter. :D She's crazy amazing and I shudder ti imagine how fabulous she is in person!

Beverly.....I need ideas. I wanna write a letter...I dont know alot about Lynne except that she's very funny, kind and we both love scrapbooking. I need help....

jenvan Collaborator
i am SO in! If you want I can post my letter here to give other people ideas as I've never actually met Lynne in person, but somehow that doesn't seem to matter. :D She's crazy amazing and I shudder ti imagine how fabulous she is in person!

Just checked the website for Extreme Makeover Home Edition (ABC) and what they want to know if you are nominating someone is: What is you family's CURRENT situation and how does it affect your family's home? Why do you need a makeover? What makes you deserving? What makes your situation unique?

She is pretty fab in person :) I'm one of the few lucky ones that gets to hang out with her on occasion!

mouse Enthusiast

thank you beverly for the wonderful email letter. i can open attachments if they are attached priperly - he he. i am such a computer nurd LOL.

rachel, just speak from the heart. most of the people who are sending me letters have not met lynne in person, but only here on the forum or some talk to her on the phone.

i watched one show where a town nominated a family. so on the part of the form that asks who is nominating lynne, everyone's name will go there. then on the cover letter in the signature part will also be everyones name. momma goose is going to help me with the cover letter. i think all of the signatures will be attention grabbing and that is what we need as they get thousands of letters a week. they also do not let you know if they have received the application and video. so, i will use a signature required delivery card. i am also making back up copies of everything in case it gets lost in the mail. if they accept you, it might be up to two months before they call. karen thinks we have a good shot, since celiac is in the news. what i hope is that i can get this in the mail immediately after thanks giving. i want us to be first. dave has forms to fill out and a video to take. then needs to send them to me.

thank you also turtle for a fantastic letter.

and listen everyone, they do not all have to be fantastic. THE IMPORTANT THING IS THAT THE LETTER COMES FROM THE HEART.

mouse Enthusiast

bump

lonewolf Collaborator

I've only PM'd Lynne a couple of times about things on the board, but have always appreciated her positive outlook and encouragement. I'm thinking about writing a short note - would that help?

Do you still need help copying the email into a post? It's really easy and simple to explain.

mouse Enthusiast

somehow or other i deleted lynne's list of all the neuro diagnosious (sp). i had printed it out for the application, but i guess i was over zealous about deleting so many emails. when i feel up to it, i will try and type the main ones in.

and any letter, no matter how short is welcome. could you please do it as a attachment. i thank you on behalf of lynne.

Lisa Mentor
somehow or other i deleted lynne's list of all the neuro diagnosious (sp). i had printed it out for the application, but i guess i was over zealous about deleting so many emails. when i feel up to it, i will try and type the main ones in.

and any letter, no matter how short is welcome. could you please do it as a attachment. i thank you on behalf of lynne.

Try looking for it in your "Trash Folder"?

mouse Enthusiast

lisa, i am such a clean freak, that i empty my trash right after i delete.

here is the list:

gluten ataxia

occulomotor apraxia

word retrieval disorder - caused from the cerebellar damage

peripheral neuropathy - caused from the cerebellar damage

autonomic disfunction - inability to sweat (when goes out into the summer heat, she is literally cooking her muscles and organs) includes sporadicblood pressure changes with extreme lows where the doctor himself cannot get a pressure reading; minimal to no tear production;decreased saliva production; decreased small and large intestine peristalsis; heart rhythm changes; also from the cerebellar damage.

dysphagia - difficulty swallowing - same cause

dysarthria - difficulty talking - starts slurring her speech and the tongue goes into spasticity - same cause

raynaud's pheonomenon

psoriatic arthritis - now being questioned by the geneticist as ankylosing spondylitis

ehler's danlos syndrome

fatty liver disease (she thinks that sounds funny)

polycystic ovary disease

hyperinsulinemia

metabolic syndrome

and then she lists all of the areas that have been damage from her falls. the damage has been permanent.

mouse Enthusiast

bump

Guest nini

bump for a great cause

Mtndog Collaborator

And I BUMP you again! :P

2Boys4Me Enthusiast

Just had to pop in to say: Beverly, what puppy isn't for sale? The picture is you and ?

Mtndog Collaborator
Just had to pop in to say: Beverly, what puppy isn't for sale? The picture is you and ?

My hubby! my last pic was me and Merrick- a dog I befriended in Costa rica and underneath it said "How much is that doggy in the window?" so when I put up my hubby, I cahnaged it cuz he's not for sale. Just being silly! :P

2Boys4Me Enthusiast

Zoom! That went right over my head. :lol: I knew that the last one was you and a dog, and I'd forgotten your tagline. So he's a keeper, eh? Got him trained up just nice.

mouse Enthusiast

please everybody, lets keep this thread on topic. this is very serious and we need to get lynne and dave that extreme makeover for their home.

she sees the doctor today to find out what the MRI says. the last fall was very serious.

she has a bug right now and feels worse then lousy. she sleeps a lot and is taking percocet for the pain from this last fall.

mouse Enthusiast

bump

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.