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 Our Content
    eNewsletter
    Donate

Get your affairs in order


bartfull

Recommended Posts

bartfull Rising Star

Hmm...my affairs in order. OK. Alan on Sunday, Bob on Monday, Steve on Tuesday...Oh, not those affairs. :lol:

OK, now that I've softened things with a lame joke, the doctor really did say that. Turns out I have terminal cancer. Lymph. "Very advanced". They say they can't cure me but they might (MIGHT) be able to prolong my life.

No thanks. There's a reason they tear a bandage off fast instead of going slowly. Fast might hurt but only for a second. Slowly hurts for a long time. And as far as I'm concerned they wouldn't just be prolonging my life but they'd be prolonging my suffering. I'm just going to let things follow their course. I've got pain meds, I've got a ton of loving friends who will do anything they can to help me. I'll get Hospice in later when the time comes. It's all good.

Jarrett is going to take over the shop for me and even though it's just ego, it's nice to know the thing I started will carry on after I'm gone. Bonnie is my best friend who brought me and Patches together and she has promised she'll find him yet another good home.

And I'm happier and more at peace than I've been in a long time. No more wondering. And when I leave here I'll be going home to God. What could be better?

There really are much worse things than a diagnosis of terminal cancer. There was a guy who used to come by on his motorized chair and talk to me sometimes. His fingers were so twisted with arthritis he couldn't get in or out of bed, he couldn't dress himself, cook, or even blow his nose without help or extreme pain. And he went on like that for YEARS. Nope, what I've got is so much easier.

Anyway, you know how sometimes people disappear from an internet forum and you wonder what ever happened to them? Well I didn't want you to wonder about me. And I want to thank everybody here for the good advice and the many friendships I've developed. I may chime in again if I think I can be of help to someone, but for the most part I'm going to lay low. You don't need a blow-by-blow account of my progress and I won't burden you with it.

So yeah, thanks and great big (((((HUGS))))) to you all. :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

((((((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))

You will be missed. You have been a great help to many. Sorry you got such news.

Link to comment
Share on other sites
kareng Grand Master

Oh!  Barty!  I am so sorry!  I will miss you.  I loved to think of you in your store.  You always sounded so happy there.  I had hoped to stop in some time. 

 

thank you for letting us know

Link to comment
Share on other sites
GottaSki Mentor

Karen lit the super silly signal....I'm thankful she did.

So very sorry to read this news.

You sound at peace which shows what a remarkable person you are....you will be missed by those you've helped as well as those whom have shared time with you... in the real world or through our keyboards.

Many hugs for all your days left on this rock...and when it's time to go, please send one up to Shroomie for me : )

Ad Astra Dear Bartie.

 

 

Link to comment
Share on other sites
icelandgirl Proficient

I'm so very sad to hear this.  You will be greatly missed.  You've been a wonderful source of comfort and inspiration to many...myself included.  Thank you for everything you've done for us all.  I'm crying typing this....so hard to hear.  I do hope you continue to chime in...your wisdom is invaluable. 

Love and (((((((((((hugs)))))))))))

Link to comment
Share on other sites
notme Experienced

o, barty, what can i say :((((((((  i am so sad :((((((((((  won't you at least try treatment :(((((  my daughter's boyfriend was dx/d  w/lymphoma stage 4 and that was 5 years ago and he is fine.......  :/  they are doing magical things with meds/treatments lots of new stuff ???

Link to comment
Share on other sites
squirmingitch Veteran

Dear Barty,

Dear Barty, dear Barty, dear Barty, dear Barty. I love you. I will remember you. Whenever I think of you, I think of you in your store, happy, with lovely music filling the air, or at home with Patches in your lap and you feeding him from a spoon. I will always think of you these ways.

You will go to your reward from your beloved Black Hills and you will go home and you will be with your dearest husband again.

Godspeed friend!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi Bartfull,  just popped over to say I wish you peace.  I remember you as such a positive presence on this board.  

Link to comment
Share on other sites
Irene Joanne Explorer

Oh I'm so sorry to hear that! In the short time I've been on this site- I've been so grateful for your help! I've learned a lot from reading some of your old posts too! 

Thankyou for the time and effort you've given here? God bless! 

Link to comment
Share on other sites
Lisa Mentor

Bartfull, I have always admired your attitude and even more so now.  I hope you are surrounded by family, great friends and enjoy every day to your fullest.

Link to comment
Share on other sites
GFinDC Veteran

I am sorry to hear that Bartfull.  But there is definitely a better place to be than here.  I said a prayer for you in Jesus name.  I hope you enjoy your time remaining here.  It's been great having you around the forum helping us out.

Link to comment
Share on other sites
Gemini Experienced

I cannot imagine this forum without our bartfull.   :( You are such an integral part and always dispensed the very best advice. I always admired your attitude regarding the challenges that were thrown at you and am so grateful for all the great posts you made. Your acceptance and peace are amazing and to be admired. God Bless you and know how loved you are here. You are one special soul.

Link to comment
Share on other sites
manasota Explorer

Bartfull,

I agree with and fully endorse your choices in how you plan to navigate the end of your life.  Smart woman.  That said, I will really miss your words and energy on this site.  Even though I've only been here for a short time, your news made me cry.

I hope I have as much notice as you when my death comes.  I want to avoid (as much as possible) the medical system when it's my time to die.  I worked in a hospital and saw many people who were not as fortunate.

I wish you peace, independence, and freedom from pain while you navigate the end of what has obviously been a wonderful life.  You have won the most wonderful gift--the love of so many people.

I send my love to you also.

Beverly

 

Link to comment
Share on other sites
IrishHeart Veteran

Dear A.

You've always been one of my favorite people on here. I admire your courage, humor, and great faith. I have always pictured you enjoying your guitar shop, your kitty, and your home because you always told me how much they gave you pleasure. You've been an inspiration to me and to so many others on here during the last few years and you've helped more people than you may ever realize. That's your gift.

It doesn't surprise me that you're facing this final challenge with the same grace that you've handled everything else thrown in your path. My first response last night when Karen told me your news was "well F you, celiac, quit  taking our peeps!" (because you know I shoot from the hip) but as I read your words this morning one more time, I can see that you've already decided to handle this last challenge with the same "Barty attitude" that I admire so much. 

You're a true warrior princess and I agree with Gemini: You are one special soul and I am so glad our paths crossed. 

xoxo

G. 

Link to comment
Share on other sites
cyclinglady Grand Master

Bartful, 

Like Scarett O'Hara, I decided to "Think about it tomorrow." in the hopes that I could write a response that would best describe my feelings and thoughts. Well, a few days have passed and it is not getting any easier!  

I respect your decision regarding your healthcare and  I am so sorry that this is happening to you.  You will be missed here as you offered such common-sense advice.  

It is funny, but on the day you posted, my newly-retired neighbor approached me about OLLI which is a group of learners at our local university.  He plays guitar in a garage rock band but wanted to learn classical guitar.  I offered to take him to campus to enroll in our classical guitar class.  Ron and I talked about our love of music and that you are never to old to learn!   I play my flute in an Orchestra and concert band with the members who are as old as 92 (yep, Deseree sits on her walker to maintain the beat on her bass drum!).   But I digresss......what I am trying to say is that you will live on in our memories and hearts each time we pick up our instruments, pet our furry friends or read another label to make sure it does not contain gluten (I will always recall your ice cream experience).  

Love and hugs!  

Link to comment
Share on other sites
SLLRunner Enthusiast

Bartfull, I am fairly new here, but I am at a loss for words. You are an incredibly brave person. I send love, light, and many hugs your way.

Link to comment
Share on other sites
cristiana Veteran

Bartfull

Thank you for all the help and encouragement that you have given so many people on this site.  

God bless you.

xxxxxx

Link to comment
Share on other sites
  • 3 weeks later...
LookingforAnswers15 Enthusiast

Dear Bartfull, 

I can't even find words to describe how sorry I am to hear this. I am at a loss for words. Thank you for all the support that you gave to me and others on this forum. God bless you. Hugs.

Link to comment
Share on other sites
StephanieL Enthusiast

Thank you so much for all you have contributed and all the people you have helped. 

Know you are in my thoughts!

Link to comment
Share on other sites
  • 2 months later...
squirmingitch Veteran

Our dearest Bartful - Alison - went to her heavenly rest on May 21, 2016. She was 61.

She was so much more than statistics. She was kind, generous, loving, giving and understanding. She gave everything of herself and never asked for anything for herself. 

Rest in peace dear Alison.

Link to comment
Share on other sites
ravenwoodglass Mentor

Thank you for letting us know this sad news.  She was always ready to lend a kind ear and comfort to those here that needed it. She has been and will continue to be missed.

Link to comment
Share on other sites
icelandgirl Proficient

Thank you so much for letting us know.  ((((((Hugs))))))

Alison has been on my mind a lot lately.  It's amazing how much you can miss someone you've never met...but she was an exceptional person who had a positive impact on everyone.  She was kind and wise...I'll always miss her presence.

I am thankful that she is no longer in pain and that she is now with her beloved husband and parents.

Link to comment
Share on other sites
cristiana Veteran

A brave, kind lady.  She helped so many people.

Link to comment
Share on other sites
jerseyangel Proficient

May she rest in peace.

Link to comment
Share on other sites
manasota Explorer

Thank you so much for letting us know.   Bartfull's calming optimistic peace will be missed.

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
      125,809
    • Most Online (within 30 mins)
      7,748

    Mls
    Newest Member
    Mls
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      It will not undo all of the healing.  If it did, diagnosis of celiac disease would be much easier!  To have enough damage to see on an endoscopy requires several weeks of gluten ingestion. 
    • Jean Shifrin
      HI, I am new to this and am still in 'repair' mode, which I know will take time. But I'm wondering if anyone knows what happens if you ingest gluten after you have made a lot of progress in repairing your villi. Does anyone know if you just have a short-term issue? Or does an accidental ingestion of gluten derail all the work you've done and set you back to square one? Thanks.
    • Scott Adams
      Hydrolyzed wheat is wheat protein that has been broken down into smaller components through a chemical or enzymatic process called hydrolysis. This ingredient can be found in various products, including cosmetics, personal care items, and some food products. For people with celiac disease, hydrolyzed wheat is generally not safe to consume because it still contains gluten proteins, even in its broken-down form. Though hydrolysis reduces the size of these proteins, it doesn’t fully remove the components that trigger an autoimmune response in people with celiac disease. In food products, hydrolyzed wheat protein still poses a risk and should be avoided. With regard to the McDonald's French fries, the total amount of hydrolyzed wheat in the flavoring is small, and the amount that ends up in an order of fries is even smaller, and likely below 20ppm. McDonald’s states that the fries are gluten-free by ingredient and free from cross-contact with gluten-containing foods in their dedicated fryers. Third-party tests and statements by McDonald's confirm gluten levels are below the FDA threshold for gluten-free labeling (20 parts per million or less). So, while McDonald’s USA fries may be gluten-free based on testing, some people with celiac disease still approach them cautiously due to the past concerns and individual sensitivities.
    • trents
      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
    • Scott Adams
      There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.
×
×
  • Create New...