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

It Can Always Be Worse


henny

Recommended Posts

henny Explorer

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

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

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
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

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

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

aww drat!

:P


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
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

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

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

jerseyangel Proficient

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

curlyfries Contributor
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
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

You guys are the greatest!

HUGS

henny Explorer

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

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

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

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

ShayFL Enthusiast

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

henny Explorer

thanks guys

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

henny Explorer

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
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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

    2. - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

    3. - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

    4. - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors

    5. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test uncertainty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,276
    • Most Online (within 30 mins)
      7,748

    Deanna Kelly
    Newest Member
    Deanna Kelly
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
×
×
  • Create New...