Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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.

Link to comment
Share on other sites

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
happygirl Collaborator

haven't received a PM or email yet

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
happygirl Collaborator

got it...thank you. xoxo

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

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!!

Link to comment
Share on other sites
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?

Link to comment
Share on other sites
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....

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
mouse Enthusiast

bump

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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"?

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
mouse Enthusiast

bump

Link to comment
Share on other sites
Guest nini

bump for a great cause

Link to comment
Share on other sites
Mtndog Collaborator

And I BUMP you again! :P

Link to comment
Share on other sites
2Boys4Me Enthusiast

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

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
mouse Enthusiast

bump

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,091
    • Most Online (within 30 mins)
      7,748

    Grammar B
    Newest Member
    Grammar B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...