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

It Can Always Be Worse

henny

By henny
in Introduce Yourself / Share Stuff

Recommended Posts

henny Explorer
henny
Posted

I have had a few drama-queen moments of self-pity over the past few months with my illness and then adjusting to the gluten-free lifestyle.

Today I sit before you, ashamed and devastated.

One of my best friends came down with Guillain-Barre Syndrome last week.

A week later and he is completely paralyzed and cannot feel anything except pins and needles. And it's getting worse. He has no sense of taste, cannot swallow or talk. His mind is still completely sharp, but he is essentially a brain in a jar.

We are all taking turns at his hospital bedside, waiting for him to lose the ability to draw breath and require a ventilator. Hopefully that won't happen, but there is still 1 or 2 weeks to go before the disease hits bottom and plateus for a few weeks...then slow reversal is expected.

He is 32 years old and normally full of life. Now it will be months before he can walk again, perhaps years before he regains full control of his body - if recovery is indeed complete.

Hug your families and friends, and always remember that things could always be worse. I will never feel sorry for myself again.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

We all have our trials. Some seem to have more than their share. I hope your friend's youth and strength can carry him through this tough time. Dear friends like yourself can help hold him up and offer than strength.

Hugs to you, your friends, your friend and his family. Don't loose HOPE!

flourgirl Apprentice
flourgirl
Posted

Hey Henny.....so sorry to hear about your friend. I've known someone who had this, too. It's a terrible thing. Good news is she did get much better and has gone on with life. You are right about one thing.....you never have to look very far to find someone much, much worse off.

Even knowing this I still have those moments....petty little pity parties. I allow it to go on for a very short time and then get on. We are fortunate to have something for which we can control and improve. Hope all goes well with your friend. I'll keep you in my prayers.

henny Explorer
henny
Posted
  • Author
We all have our trials. Some seem to have more than their share. I hope your friend's youth and strength can carry him through this tough time. Dear friends like yourself can help hold him up and offer than strength.

Hugs to you, your friends, your friend and his family. Don't loose HOPE!

Thanks and you are right! Even in this case it could be worse - a full recovery is 70% likely, and an almost-full recovery is more like 90 - 95% likely. Pretty great odds compared to many things.

It's going to be an endurance event, but it can have profound and beautiful scenery along the way.

Thanks for the hugs...I'll be sure to pass it on!

henny Explorer
henny
Posted
  • Author

What is interesting to me about this experience with my friend (and another friend who lost his battle with Pancreatic cancer a couple years back) is how it resonates with past events and feelings I have had.

My husband is a longtime sufferer of Crohn's disease. Over the years we have had years of extreme pain and disability, emergency surgeries, long recoveries and many setbacks. The isolation and stress of those times was just unbearable.

Now when dealing with tragedy among friends and family, all those past hurts come flooding back - leading me to feel much more upset than I think I should.

Does that make sense to anyone? I am not sure how to quash that effect - it amplifies things and seems counterproductive.

Any advice on coping/quieting the past would be greatly appreciated!

Lisa Mentor
Lisa
Posted

I am not sure how to quash that effect - it amplifies things and seems counterproductive.

You can't, but it will make to good times all that much better. (those good times aren't free, you know. You earn them ;) )

henny Explorer
henny
Posted
  • Author

aww drat!

:P

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
Now when dealing with tragedy among friends and family, all those past hurts come flooding back - leading me to feel much more upset than I think I should.

I used to use an expression with my best friend who was coping with ovarian cancer: "It's not how hard you fall, it's how high you bounce."

It does seem that, like a tennis ball, we keep losing some of our ability to bounce back the more we have to deal with. I am personally noting that I don't bounce as well as I used to, but keep trying to find that little bit of extra elasticity to give me a bit more spring. Hugs to you and I hope you and your friend can bounce back.

ShayFL Enthusiast
ShayFL
Posted

Sorry to hear about your friend. But most recover from GB and he is young and healthy and should do well.

One of my DH colleagues lost her husband last night. 46. Yes....it can always be MUCH WORSE than not being able to grab a slice of pizza from Pizza Hut!!!!

henny Explorer
henny
Posted
  • Author

awww....sorry for your loss! :(

jerseyangel Proficient
jerseyangel
Posted

Henny--my best wishes for a full and smooth recovery for your friend. :)

curlyfries Contributor
curlyfries
Posted
Now when dealing with tragedy among friends and family, all those past hurts come flooding back - leading me to feel much more upset than I think I should.

Does that make sense to anyone? I am not sure how to quash that effect - it amplifies things and seems counterproductive.

Any advice on coping/quieting the past would be greatly appreciated!

I know exactly what you mean, but I think those feelings are a good thing......it's all in how you look at it. I think it has made me a much more compassionate person. Even though I don't like the fact that I am a much more emotional person than I used to be, I think it has caused me to be more sympathetic and able to relate more to what others are going through. Even though I am more emotional, I feel, in actuality, that I am stronger for having been there.

JNBunnie1 Community Regular
JNBunnie1
Posted
I know exactly what you mean, but I think those feelings are a good thing......it's all in how you look at it. I think it has made me a much more compassionate person. Even though I don't like the fact that I am a much more emotional person than I used to be, I think it has caused me to be more sympathetic and able to relate more to what others are going through. Even though I am more emotional, I feel, in actuality, that I am stronger for having been there.

BIG ditto.

henny Explorer
henny
Posted
  • Author

You guys are the greatest!

HUGS

henny Explorer
henny
Posted
  • Author

ugh....he's continuing to lose ground with this syndrome.

today he lost swallowing, blinking, and speaking. he's on oxygen but not yet a vent. pneumonia has set in.

hope this plateus soon...my heart is bursting.

mushroom Proficient
mushroom
Posted

Gosh, I am so sorry for you and your friend. I send prayers your way that he can pull through this. He is young and strong; be hopeful.

henny Explorer
henny
Posted
  • Author

week 3

he's now on a ventilator. worst part about it is they cannot sedate him because the GBS is affecting his blood pressure and they don't want to risk making that worse. so he's awake and aware, with a feeding tube in his nose and a vent tube down his throat. his eyes are taped shut because the paralysis does not allow him to blink or close them on his own. he's completely paralyzed and cannot feel anything except right around his collarbones and the top of his head. he's awake, blind, and in enormous discomfort.

he has pneumonia, tachycardia, unstable blood pressure, and his sats are getting worse. he's in ICU so we're unable to see him much at this point.

the whole 'it can always be worse' mantra is no longer working to calm me.

I also got glutened at the hospital cafeteria (who knew that shredded cheese sometimes has gluten?) so my mood is blacker than all get-out, so sorry for whining here...it feels good to vent though.

please give up some prayers/good vibes for my friend....he sure could use a break right about now.

Morrisun Newbie
Morrisun
Posted

This makes me so sad. I will keep your friend in my prayers.

ShayFL Enthusiast
ShayFL
Posted

Praying now....so sorry for you and your friend. How awful. :(

henny Explorer
henny
Posted
  • Author

thanks guys

and Shay, I'm praying for your brother as well :) prayers all around

henny Explorer
henny
Posted
  • Author

week 4 and still deteriorating. This puts him in the 90th percentile for severity.

tests are showing severe axonal damage and high likelihood of permanent damage - it will take at least 6 months to see how much disability is permanent.

please pray for him...and pray double for his fantastic wife.

ravenwoodglass Mentor
ravenwoodglass
Posted
week 4 and still deteriorating. This puts him in the 90th percentile for severity.

tests are showing severe axonal damage and high likelihood of permanent damage - it will take at least 6 months to see how much disability is permanent.

please pray for him...and pray double for his fantastic wife.

Still praying for all of you. I hope he turns around soon. Don't lose hope the doctors prepare us for the worst but the worst doesn't always happen.

Archived

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

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


  • Member Statistics

    • Total Members
      131,613
    • Most Online (within 30 mins)
      7,748
    RainSunCombo
    Newest Member
    RainSunCombo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • itsdunerie
      Potential celiac need advice

      By itsdunerie · Posted

      Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat  poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again.  Why ingest poison for a month to have some doctor say Hey, All you Have To Do Is Never Eat poison Again.. 
    • itsdunerie
      Potential celiac need advice

      By itsdunerie · Posted

      Poop head, sorry, but I accidentally posted and can't figure out how to continue my post. My long winded post was going to tell you that after I figu
    • itsdunerie
      Potential celiac need advice

      By itsdunerie · Posted

      15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y
    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
×
×
  • 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.