Dealt a Crappy Hand
Living with psoriasis19 total reviews
Comment from Donald O. Cassidy
Spiritual Echo, your on-going ordeal with this skin disease both inspires me and puts me to shame. My annual bouts of itchy dry skin are only token compared to yours. You've educated me on this terrible affliction and brutal rejection by some of the public. My other handicaps--complete loss of hearing, poor eyesight and a form of aDHD pale into mediocrity compared to yours.
I do think my small afflictions render me more sympathetic to other people with similar hardships. In a deeper way, I think your screen name is well-chosen. Suffering often fosters outstanding character, and you're an example. On FanStory feedback, I've noted all along that you encourage me by special insight. Your comments on my postings indicate you ahve spiritual discernment.
You name Steve Hawkins. I've read a book featuring his story. Though he was a skeptic and never identified with Christianity--as far as i know--nevertheless he had insight from suffering.
You well deserve the six stars.
Don
reply by the author on 26-Feb-2014
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Spiritual Echo, your on-going ordeal with this skin disease both inspires me and puts me to shame. My annual bouts of itchy dry skin are only token compared to yours. You've educated me on this terrible affliction and brutal rejection by some of the public. My other handicaps--complete loss of hearing, poor eyesight and a form of aDHD pale into mediocrity compared to yours.
I do think my small afflictions render me more sympathetic to other people with similar hardships. In a deeper way, I think your screen name is well-chosen. Suffering often fosters outstanding character, and you're an example. On FanStory feedback, I've noted all along that you encourage me by special insight. Your comments on my postings indicate you ahve spiritual discernment.
You name Steve Hawkins. I've read a book featuring his story. Though he was a skeptic and never identified with Christianity--as far as i know--nevertheless he had insight from suffering.
You well deserve the six stars.
Don
Comment Written 26-Feb-2014
reply by the author on 26-Feb-2014
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I happened to be in the position of entertaining a petite 'Barbie Doll' woman very beautiful, but feigned weakness and had the men dancing around her like flies, running, providing and more. It irritated me to no end. I spoke to one man whom I knew very well asking him it was that he could fall for act. As he explained it, it was fun, the illusion that the men were knights and she was a damsel. when I asked, why not me, he answered very seriously. He told me that there were only so many people worthy of the universe's challenge and I was the lucky one, not the bimbo, with perfect flesh. "She won't learn a thing, or give a damn. Think of yourself as a hand-picked vessel of discovery. You are blessed."
My response, though not verbal, blessed be damned, but it came to me over time, nothing ever came easy, that I sure as hell hope there's something after this so I can appreciate the crap I've been through.
But as you know, living with your own challenges, we do play the cards we're dealt.
Thank you for your very kind words and the all the dazzling stars.
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I appreciate your reply, Spiritual echo. It's all the more ironic that in my lack of familiarity in voting for the contest entries, I hit a wrong block. Your entry was my choice. I wish I could change the mess I made. Don
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What mess would that be?
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If you meant that you intended to vote for my entry and hit the wrong box, that's not a mess, that's a boo-boo. But, let me say that i voted for spitfire. She's likely to won and not just because of her challenge. Her writing was excellent and along with the information, she also let us into her world. now, ideally, of course, I'd like to win, second choice a tie with mine, but regarless, these contests keep us writing. Don't give it a second thought.
Comment from Barbara Anne
What a truly inspirational story. The light at the end of the tunnel isn't always a train coming in the opposite direction and by taking the chance given the writer has shown that there is hope. After menopause I developed Rosacea which takes some balancing with soaps etc, but nothing so scary as this. I am very humbled.
reply by the author on 26-Feb-2014
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What a truly inspirational story. The light at the end of the tunnel isn't always a train coming in the opposite direction and by taking the chance given the writer has shown that there is hope. After menopause I developed Rosacea which takes some balancing with soaps etc, but nothing so scary as this. I am very humbled.
Comment Written 26-Feb-2014
reply by the author on 26-Feb-2014
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I feel the same when friends face cancer and other life altering disease, but there is no competition, we deal with the cards we are dealt and the world is becoming far more enlightened and tolerant. Thanks for the read and feedback.
Comment from nelliesellie
I love the story. You were dealt worse than the dead mans hand. It is a disability that everyone sees. It is judged before you are. People fear it. They do not try to over come their fears. The skin covers every inch of the body. No part is safe. You went on because you felt you had no choice. But you did have a choice on what you did with your life. You chose to live as normal life as you could. For that you can be proud. Great work. Good luck with the contest.
reply by the author on 26-Feb-2014
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I love the story. You were dealt worse than the dead mans hand. It is a disability that everyone sees. It is judged before you are. People fear it. They do not try to over come their fears. The skin covers every inch of the body. No part is safe. You went on because you felt you had no choice. But you did have a choice on what you did with your life. You chose to live as normal life as you could. For that you can be proud. Great work. Good luck with the contest.
Comment Written 26-Feb-2014
reply by the author on 26-Feb-2014
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Thank you. Those are very kind words of encouragement.
Comment from country ranch writer
TRY REMOVING ALL YEAST PRODUCTS FROM YOUR LIFE STYLE ALL TOGETHER, NO BREADS COOKIES OR ANYTHING MADE WITH ANY KIND OF YEAST PRODUCTS AT ALL. THIS DISEASE IS DEBILITATING. MY NEPHEW HAD IT AND THE DOCTOR SAID IT WAS FROM YEAST, CONSUMING YEAST IS A DEADLY ALLERGY.
reply by the author on 26-Feb-2014
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TRY REMOVING ALL YEAST PRODUCTS FROM YOUR LIFE STYLE ALL TOGETHER, NO BREADS COOKIES OR ANYTHING MADE WITH ANY KIND OF YEAST PRODUCTS AT ALL. THIS DISEASE IS DEBILITATING. MY NEPHEW HAD IT AND THE DOCTOR SAID IT WAS FROM YEAST, CONSUMING YEAST IS A DEADLY ALLERGY.
Comment Written 26-Feb-2014
reply by the author on 26-Feb-2014
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Gluten plays havoc with many people. Thanks for the kind thoughts and the review.
Comment from Carole Rosa
Ingrid, Wow. What an amazing story. I had a young neighbor who had psoriasis much like yours. She had a nice figure, long black hair and had a beautiful face. She was covered with tattoos. She had tattoos penned over the psoriasis to hide it. She too, did treatments and creams and nothing helped her. She felted much like you described.
My eight year old grandson just started to have rashes that has now turned into psoriasis according to the doctor. I noticed that you did mention STRESS and I do believe that stress is a factor too. Your life has been stressful from the stories that you have written, so I do believe that. I'm so happy for you that you have this positive outlook now. This is a wonderful story and good luck in the contest. There are so many sad stories in the lives of authors. Smiles to you and hugs. Carole
reply by the author on 30-Jan-2014
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Ingrid, Wow. What an amazing story. I had a young neighbor who had psoriasis much like yours. She had a nice figure, long black hair and had a beautiful face. She was covered with tattoos. She had tattoos penned over the psoriasis to hide it. She too, did treatments and creams and nothing helped her. She felted much like you described.
My eight year old grandson just started to have rashes that has now turned into psoriasis according to the doctor. I noticed that you did mention STRESS and I do believe that stress is a factor too. Your life has been stressful from the stories that you have written, so I do believe that. I'm so happy for you that you have this positive outlook now. This is a wonderful story and good luck in the contest. There are so many sad stories in the lives of authors. Smiles to you and hugs. Carole
Comment Written 30-Jan-2014
reply by the author on 30-Jan-2014
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Thanks. Be wary of infections, especially strep for your grandson and get immediate antibiotics as infection can be a HUGE trigger for an outbreak. thanks for reading.
Comment from reconciled
hi Ingtid....-smile-....amazing....I went through this....listen to this...she started getting this...rash....on her feet and hands....blisters...peeling .....so we started the doctor thing....went to several...first...I left something in the car....and rode the elevator back up with doctor who...was on the phone apologizing for running late......anyway...the walls are so thin...you can hear...him talking to the parenciants in the other rooms....same shpeel....not and switched and or but...anyway, went a couple more...did uv treatment things...having to sign a wavor...and dish out a hundred bucks a pop....twice a week....not working....a year...not working...up each night poping these blisters and cleaning them with rubbing alcohol....would help...it not spread. we ...were getting worried....one day...I was watching television....and this commercial came on for lamasil......for some reason...I went got some....started putting that on....cleared it up.....twelve dollar tube.......after a year of worry and a couple grand..........very sorry you suffer from this....I know its frightening at times....they don't really know how to cure it....is what I gathered....try that twelve dollar tube.....alright love you Michael
reply by the author on 27-Jan-2014
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hi Ingtid....-smile-....amazing....I went through this....listen to this...she started getting this...rash....on her feet and hands....blisters...peeling .....so we started the doctor thing....went to several...first...I left something in the car....and rode the elevator back up with doctor who...was on the phone apologizing for running late......anyway...the walls are so thin...you can hear...him talking to the parenciants in the other rooms....same shpeel....not and switched and or but...anyway, went a couple more...did uv treatment things...having to sign a wavor...and dish out a hundred bucks a pop....twice a week....not working....a year...not working...up each night poping these blisters and cleaning them with rubbing alcohol....would help...it not spread. we ...were getting worried....one day...I was watching television....and this commercial came on for lamasil......for some reason...I went got some....started putting that on....cleared it up.....twelve dollar tube.......after a year of worry and a couple grand..........very sorry you suffer from this....I know its frightening at times....they don't really know how to cure it....is what I gathered....try that twelve dollar tube.....alright love you Michael
Comment Written 27-Jan-2014
reply by the author on 27-Jan-2014
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You're very sweet my friend. Are you practising haibun?
By the way, rubbing alcohol is like rubbing kerosene on a raw wound. It's unlikely you had psoriasis, but many ailments appear the same way. Unless it was a dermatologist, I'd question the diagnosis,but it could be pustule psoriasis...if anything got rid of it and it hasn't come back, who care what worked, the main thing is it worked.
I can't use anything because of the terms and conditions, but right now I don't need anything...party time!
Hey, how about two of your poems in the poem of the month. I've never seen any one appear with two works in the same competition. Bravo.
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ha....naw just run out of words....um...no...no...we went to three dermatolagists...one supposed to be the best in the woodlands....all said it was...I'm the one who kept saying...never seen psoriasis like this....a man I worked for had it...red patches....yea, that's what they said...truth is I didn't believe them...that's why I was still looking for solution subconsciously....ya know watching tv....I took her to three different doctors...what...? they were assuring myself and her we were doing all we could....yatayatayata....rubbing alcohol is cure all....I swear by it....-wink- ...yea, that was something....I never really thought they cared for me.....obviously my one hundred and so "fans" are vacationing at present...perhaps they'll arrive tomorrow....held breath hup......haha....alright you....well I pray whatever it is...works for you....I really didn't feel like the doctors we seen had handle on things.....very frustrating guessing game of sorts. love-
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haven't voted...i'll read them all tomorrow.
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theres a whole bunch of good ones...I was...I was just being a smartass...it wont make much difference at this point....ahh just happy to be nominated......TWICE.....lol
Comment from Phyllis Stewart
Ingrid, your case is much worse than mine ever was. It was on my feet, butt and up my torso, but never as far as breasts and never on my arms or head. So I guess I was lucky to have it limited.
I, too, tried the UV light treatment, but it left me too tanned and only helped about 30% and then it stopped helping at all. That was my first choice. The second was Enbrel, the weekly injections. I was reluctant, but I agreed to try it.
Glad I did. It works so well that there is no itching and only a very few spots of some scaling.. essentially cured. I had to stop taking it for two years when my hubby was out of work, cuz he lost his health insurance with the job, and we didn't have 1800 bucks per month for the four syringes. Now I have the drug again since he has good medical ins again, but who knows who long that will last when obamacare kicks in for us next year? Guess I'll wait and see.
I know the pain and itching will come back without the Enbrel. I would never use Remicade, the one that requires a hospital or clinic visit to administer, since it makes your hair fall out like chemotherapy. But the Enbrel is great... no side effects that I know of. I wonder.. was THAT the drug in your medical experiment?
reply by the author on 25-Jan-2014
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Ingrid, your case is much worse than mine ever was. It was on my feet, butt and up my torso, but never as far as breasts and never on my arms or head. So I guess I was lucky to have it limited.
I, too, tried the UV light treatment, but it left me too tanned and only helped about 30% and then it stopped helping at all. That was my first choice. The second was Enbrel, the weekly injections. I was reluctant, but I agreed to try it.
Glad I did. It works so well that there is no itching and only a very few spots of some scaling.. essentially cured. I had to stop taking it for two years when my hubby was out of work, cuz he lost his health insurance with the job, and we didn't have 1800 bucks per month for the four syringes. Now I have the drug again since he has good medical ins again, but who knows who long that will last when obamacare kicks in for us next year? Guess I'll wait and see.
I know the pain and itching will come back without the Enbrel. I would never use Remicade, the one that requires a hospital or clinic visit to administer, since it makes your hair fall out like chemotherapy. But the Enbrel is great... no side effects that I know of. I wonder.. was THAT the drug in your medical experiment?
Comment Written 25-Jan-2014
reply by the author on 25-Jan-2014
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As I'm sure you can ascertain, I was beyond desperate and would have let them shoot anything into my veins. This current injection is ten years ahead of anything on the market today--at least that far off being available. There are something around 800 people globally in this study. It's a real bitch of a disease, isn't it?
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Yes, I've only had it for 15 years but you've had it most of your life. You'd think they could find a cure with so many sufferers. I'm glad to hear the new drug works well. Enbrel works for me, but it's good to know there is something else out there that's even better. Glad you got to use it!
Comment from GWinterwin
This is a very good story about a very sad situation. When I read stories like yours, I really realized how thankful I should be and not take anything for granted. I admire you for being shown enough to tell your story in the reality of it. That bless you my friend all I can say is, I believe I am more thankful now for my health.
reply by the author on 25-Jan-2014
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This is a very good story about a very sad situation. When I read stories like yours, I really realized how thankful I should be and not take anything for granted. I admire you for being shown enough to tell your story in the reality of it. That bless you my friend all I can say is, I believe I am more thankful now for my health.
Comment Written 25-Jan-2014
reply by the author on 25-Jan-2014
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Thanks for reading and yes, those that are healthy have a lot to be thankful for.
Comment from maggieadams
Thanks, Ingrid, for sharing this affliction so comprehensively. My ex had psoriasis, but not to that extent, but I remember some of the effects you describe like sunburned hands and cracked feet. He used an old-fashioned sun lamp. Sounds like you did everything under the sun to fight this disease. I am happy for you that you had a chance to get into a study and that it is working.
reply by the author on 25-Jan-2014
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Thanks, Ingrid, for sharing this affliction so comprehensively. My ex had psoriasis, but not to that extent, but I remember some of the effects you describe like sunburned hands and cracked feet. He used an old-fashioned sun lamp. Sounds like you did everything under the sun to fight this disease. I am happy for you that you had a chance to get into a study and that it is working.
Comment Written 25-Jan-2014
reply by the author on 25-Jan-2014
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I'm pretty lucky to have finally come to a place to find some reprieve. thanks/
Comment from debskatz
Hi SE,
It seems as though we've talked about your psoriasis before. I was diagnosed with it a couple of years ago. In the last few months, however, it's gotten crazy on me. I want to scratch my head, ears, elbows, back, butt, stomach, legs and knees off! It certainly wasn't fun reading about how bad yours has gotten at times. I pray mine will never be that bad, or I might really find a cliff to jump off of.
I know what you mean by simply dealing with the hand you're dealt. Heck, that's all you can do.
I'm so thrilled you've finally found something that has put you in remission, hopefully for good. I finally started a bimonthly shot nearly two weeks ago. So far, all I notice is it's drying up my skin. Well, we'll see.
Take care & thanks for sharing with us. I certainly appreciate it!
smiles,
deb
reply by the author on 25-Jan-2014
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Hi SE,
It seems as though we've talked about your psoriasis before. I was diagnosed with it a couple of years ago. In the last few months, however, it's gotten crazy on me. I want to scratch my head, ears, elbows, back, butt, stomach, legs and knees off! It certainly wasn't fun reading about how bad yours has gotten at times. I pray mine will never be that bad, or I might really find a cliff to jump off of.
I know what you mean by simply dealing with the hand you're dealt. Heck, that's all you can do.
I'm so thrilled you've finally found something that has put you in remission, hopefully for good. I finally started a bimonthly shot nearly two weeks ago. So far, all I notice is it's drying up my skin. Well, we'll see.
Take care & thanks for sharing with us. I certainly appreciate it!
smiles,
deb
Comment Written 24-Jan-2014
reply by the author on 25-Jan-2014
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I'm sure you know a great deal about this issue, but antihistimines can help with the itching. PM me if you need any home remedies to help survive, but the best case scenario I can offer is get thee to the Caribbean and put thine chair in the ocean and suck up the waves and sun.
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LOL!! Don't I WISH!!!
Oh, btw, love the "connect the dots" with the hunk! You're a trip!! LOL!
:)
