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It Can Always Be Worse

henny

By henny
in Introduce Yourself / Share Stuff

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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.

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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

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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.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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