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People Who "bailed" When You Were Sick/crippled With Pain?


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#16 IrishHeart

 
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Posted 17 June 2011 - 12:52 PM

[KWYLEE quote name
Hub says "Sorry, babe, but people don't love ya when you're down and out" (he is more of a realist, perhaps)...but I don't want to believe that people are that shallow.


I agree with your husband but with a couple words extra: WEAK, FEARFUL people don't love ya when you're down and out. Seems like some humans are afraid for whatever reason to approach you when you are ill or in difficult circumstances, (with the exception of the one whose approach is to stop speaking to you because you weren't well - not sure what to make of that ridiculousness) - But the others perhaps just don't know what they'll say, or are afraid you'll ask them for something, or here's the biggest thing: perhaps they just don't want to have to face that this could mean the same for them, since it appears they're in your family.

In any event, as hard as it may be right now, I'd let it go - turn the page and move on. You did the right thing by planting the seed, by speaking up and letting them know something important that may help them in the future.
[/quote]


Thanks, hon--and I did try, for sure. Whatever they do with the info is up to them.
I also appreciate that you raise a good point about human nature--the "there but for the grace of God go I" thinking. I can imagine the "Whew! It's not ME that is in that agonizing pain" thought bubble over their heads. :blink:

True empathy is a gift. Not everyone has it. Some of us possess it innately and those of us who have suffered become masters of it. ;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#17 IrishHeart

 
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Posted 17 June 2011 - 12:54 PM

I know I wouldn't do that to somebody :o

Me neither, kiddo!!!--maybe that's why I feel so stunned .. :(
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#18 IrishHeart

 
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Posted 17 June 2011 - 12:56 PM

My heart goes out to you..as I have been there too lost family and friends ...but I had to change my thought to it is their loss!! None of my family took it serious and have all chosen not to get tested even though they all have symptoms even my one niece has struggled since birth...she is soooo obvious celiac...but again oh well after yrs of trying to help them I have to just help myself and my kids now ...I know it hurts and it will always hurt...family should never turn their back.....But we here can be your family.... :D Big hugs.....



Thanks dear GFgirl! Really appreciate the hugs and the wise and compassionate words! ;)
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#19 IrishHeart

 
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Posted 17 June 2011 - 12:59 PM

Irish, our husbands must be brothers! Mine dotes on me as well. The last 3 1/2 years have been very difficult living with chronic pain. I went through guilty feelings of holding my husband back from doing things he loves and so on. We had to cancel so many plans because I did (and still do) live according to how my back was/is that particular day. Plus my husband works about 70-80 hours per week at a highly stressful job. Sometimes when he comes home he must do the laundry, cook and clean because I have not been able to do it myself (when I have all kinds of time on my hands). I remember asking him awhile ago whether he loved me any less because of it and he lifted up my chin and said, "I love you now more than ever. I admire your steadfastness and perseverance so do not ever think I could love you any less." It really stood out in my mind because I have felt like half a person at times and at my young age a hindrance. Now that I am in a better place I realize that I give, too, and do what I can. My husband is my rock and constantly edifies me and reassures me that I am so valuable (and I know that I am!).

My family is the same. They all rally around me and are so supportive of all my health issues. My Mom calls me daily to see how I am. When we get together everyone is absolutely stringent on CC, gluten-free food and so on, even keeping labels of things to ensure there is no gluten. Most of my friends are the same, too, but there are admittedly a few people I am very surprised that have not contacted me in about two years. I realize people have their lives but at times I feel left out because of my diet/pain restrictions. In fact, a "friend" had a baby and I did not even know about it until two weeks after the fact! I could have been checking up on her more than I did, too, but still.

Some people do "get" it; most do not. It seems like those without health problems have no concept of pain and can be downright heartless. Those who have suffered seem to be far more empathetic and sympathetic. Pain has really taught me a lot, too. I have always been compassionate (to a fault at times) but am now more so than ever. Now when I stop at a busy intersection and see a woman shuffling across the street I do not wonder whether she has been drinking but feel bad because she may be in pain. Maybe she has just been glutened! I see things differently.

A few acquaintances may see me in out and about and say, "Wow! You look good today. Your back must be better." Often I am in so much pain and do not show it and yet I do not want to take ten minutes to explain that whole chronic pain thing. One woman I know goes horseback riding frequently and she says she is shocked I cannot do more than I do as "...we have the same kind of pain...". She wonders how I can possibly go on a trip to Europe when I cannot even attend a BBQ. I get that BUT she does not understand that I must pick and choose what to do on that particular day. I must prioritize especially if I have an appointment or cooking class the next day. Know what I mean?

So, I hold on tight to those who do support and love me unconditionally. My core group really matter and are a good example of what love and compassion should be. My Mom has cried many tears while holding me and hurts so deeply for me. That is true love and I am incredibly and amazingly blessed to have her, my family and my precious husband whom I adore to bits. :)

Hold fast to that amazing husband of yours. Be assured of his love and commitment towards you. Hope you experience joy in that sweet heart of yours today!!


Dear Love2--Most of what you say about your feelings regarding hubby mirrors mine. I felt I was "ruining' his life. He is 10 years older than I am and retired and we planned on traveling. Everything came to a screeching halt. One day, ill out of my head, I tearfully told him he could divorce me; I would understand. I didn't want him saddled with a sick wife. My big bear of a sweetheart said quietly-- "Don't ever say such a thing like that again--you're my girl. We'll get through this together." I could cry at the sweetness of that memory. He is my rock --I always say that too! :) I feel bad about the things we have missed, but he doesn't care. All he cares about is me getting well. (and I am slowly but steadily :) )
My struggle has been inexplicable; I was so ill and in excruciating joint/muscle and burning nerve pain, 24/7, unable to sleep, lie down, walk, sit...out of my mind with cognitive dysfunction, insomnia and anxiety and every day was hell. He has picked me up off the bathroom floor when I was so spent from bouts in there and held cold compresses on my head to soothe the migraines. he has done it all-- dressed me, massaged me, and bathed me. My poor Mum didn't know what to do for me--she lives 4 hours away and could only cry with me over the phone. I'm the STRONG one in the family! They all lean on me--and I'm the baby of the family. I took care of her and my Dad for years when he was ill and dying...then, this HIT me. Just a nightmare. I lost nearly 4 years of my life. No drugs help me. I just live with it. And yes, if it were not for my guy, I would have gone mad. He says I saved my own life. I say I did it because of him. He has reassured me every single day and evening that we would figure this out-as I searched for an answer. He does not understand anyone bailing on a loved one.
We are beyond fortunate to have these men as our best friends/lovers, yes?! yes ;)

Thank you for your reassuring and touching reply. You're pretty amazing--I admire your courage --you are a warrior princess indeed. :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#20 IrishHeart

 
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Posted 17 June 2011 - 01:08 PM

I went through something similiar except that in my case I wasn't able to keep sending cards and attending things. I hardly knew what day it was sometimes. It was a big eye opener for me when people I had known for over 10 years (I'm 31 so that is a large chunk of my adult life) stopped calling me or asking how I was doing. Even worse, was one time when I was undergoing neurological testing while my husband had to go out of town for work. I was not supposed to drive under doctors orders because of unexplained seizures. The appointment had taken months to get and if I canceled it would have been another 6 months before they could get me in. I asked several people that had been there in the past for a ride to the dr. These were not people working full time--they were mostly part time, retired or students that had flexible schedules. The person that agreed to take me ended up being someone I had only known a few months. My long time friends had bailed and didn't even return my call or call later to ask how the tests went. It really hurt for a long time. But I have moved on and I'm trying to make new friends now. A lot of the people that are my newer friends have also had/have chronic illnesses and they can relate. Most of them I probably would not have become so close to if it were not for my own illness. I did reach out again to a few people that bailed when I was at my worst. Some of them came back into my life and at least one apologized to me saying she had no idea I was that serious. Many people don't realize it because we don't always look sick. And in your case if you still kept up with most of the correspondence while sick then your friends had no sign that anythign was wrong. Of course in my case droppign everythign I found out most people just took it as a sign that I didn't care because I didn't remmember their birthday. My own mother really hurt me by giving me a "birthday calendar" and several packs of birthday cards so I wouldn't forget or have an excuse for not sending them. I broke down in tears over that because I had been so sick I couldn't get out of bed most days, didn't know what day it was because I was losign my memory, and and she was chiding me about not sending cards instead of asking me if anything was wrong.


Sweetie, I had the same kind of days-- complete brain dysfunction when I thought "I am losing my freakin mind". Just to clarify--THEY ALL KNEW WHAT WAS WRONG BECAUSE I TOLD THEM THE TRUTH! That's what makes this so difficult. Total bizarre-world. I held onto my sanity by trying to do as many things "normally" as possible. How I did it--is beyond me. I would walk into the kitchen and "forget" how to cook. I messed up the checkbook. I couldn't do any of the things I loved--including read. I used to read 3 books at a time. It was horrible and I feel for you. I felt like I HAD to continue to do all these things because people depended on me. I wish they were as reliable as I am--and I did it all with serious neurological issues. They know what happened to me; they just choose to ignore it.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 IrishHeart

 
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Posted 17 June 2011 - 01:13 PM

Ya know when they'll "get it?" When something devastating happens to them. That's when the clueless realize that they weren't there for their friend and they'll feel terrible.


.. NOT that I'd want anything bad to happen to anyone!! But it's THEN that they'll realize!


You may be right, hon. And you know who will be there for them?...me. I'm a dope. :rolleyes:
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 GlutenFreeManna

 
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Posted 17 June 2011 - 01:51 PM

Sweetie, I had the same kind of days-- complete brain dysfunction when I thought "I am losing my freakin mind". Just to clarify--THEY ALL KNEW WHAT WAS WRONG BECAUSE I TOLD THEM THE TRUTH! That's what makes this so difficult. Total bizarre-world. I held onto my sanity by trying to do as many things "normally" as possible. How I did it--is beyond me. I would walk into the kitchen and "forget" how to cook. I messed up the checkbook. I couldn't do any of the things I loved--including read. I used to read 3 books at a time. It was horrible and I feel for you. I felt like I HAD to continue to do all these things because people depended on me. I wish they were as reliable as I am--and I did it all with serious neurological issues. They know what happened to me; they just choose to ignore it.


Oh, absolutely. I told my friends what was going on with me too. I asked my church and sunday school class to pray for me week after week. And for months when I couldn't make it to church anymore my husband went and told them what was going on. But that doesn't mean they really KNEW what what going on. People that are healthy or have never had that type of thing happen to them have no idea. They are not there living it with you. They are too wrapped up in their own lives most of the time too. My mom knew I had been sick but she lives in a different state 500 miles away. She wasn't there in my life to see what it was like everyday. She didn't understand that I had lost my ability to read forcing me to drop out of grad school (she knew I had to take a leave of absence but didn't understand or didn't think i was really that bad).

Anyway I absolutely feel where you are coming from and know what you mean. I probably would have kept goign to thigns and trying to participate too if I had not been having the seizures. I used to be the one everyone could always depend on to volunteer or to help organize things. It was one of the character qualities that my husband says made him fall in love with me. Bless his heart. He never thought that he would be my caretaker. He loved that I was strong and independent and loved helping others. He stayed by my side however and took me to all the drs appointments and advocated for me when I thoguht I must just be losing my mind, just like your husband did. I'm so glad to hear from reading your post and a few others in this thread that there are some good spouses out there that stuck by their mates when it was the hardest. That's what marriage is all about IMO. That's true love. This struggle has made our lives hard but it's made our marriage stronger. I try to look at the good in every situation. I've lost a lot of friends but I've grown closer to my husband and learned a new compassion for those hurting that I would not have had if I hadn't been through what I've been through. You have that compassion too Irish Heart! I've seen it in your posts here. You'll have no trouble making new friends and finding your place in life again. :)
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#23 IrishHeart

 
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Posted 17 June 2011 - 01:56 PM

I try to look at the good in every situation. I've lost a lot of friends but I've grown closer to my husband and learned a new compassion for those hurting that I would not have had if I hadn't been through what I've been through. You have that compassion too Irish Heart! I've seen it in your posts here. You'll have no trouble making new friends and finding your place in life again. :)



Thanks, honey--and right back at ya! ;) ;)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 RL2011

 
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Posted 17 June 2011 - 02:17 PM

Sorry to hear any of you has experienced disappointment in others. I suggest you do what I do. Don't expect anything from anyone and that way you will not get let down by anyone.
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Richard

#25 IrishHeart

 
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Posted 17 June 2011 - 02:49 PM

Sorry to hear any of you has experienced disappointment in others. I suggest you do what I do. Don't expect anything from anyone and that way you will not get let down by anyone.


Hub has said similar words to me...I did not realize I was "expecting" anything until it was pointed out to me. You are right--that is exactly where the disappointment comes from.
Then again, I am the kind of person who would "be there for someone" NO MATTER WHAT--it was my mistake to think that EVERYONE thinks this way. They just don't.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#26 adab8ca

 
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Posted 17 June 2011 - 03:08 PM

My heart breaks for everyone that has been deserted by their loved ones when they got so sick :(
We also thought I was dying. And I was suicidal. Told my husband to divorce me, I was totally ruining our lives. I was a total mess, lying on the couch after work every day just sobbing in pain. I thought I would definitely be in a wheelchair before last year was over, the nerve pain was SO bad and nothing touched it.
My best friend since I was 14 (I am now 42) said she wanted to come over and visit. I was not up to visitors at all. She insisted, she said we didn't have to talk, she just wanted to be there for me, to hold my hand. I thought that was SO brave of her, she did NOT know what she was walking into but risked it anyway.
The other day I told one of the owners of my company (it is a hubby and wife and I was talking to the wife) that I was feeling so much better and she STARTED TO CRY and came and gave me a hug and said it was the best news she had in a long time. So this horrible experience really made me realize that I am not alone. I am not at all trying to brag, sorry, just that I cannot even imagine not having people try to understand when things are so, so bad. I guess my friends, family, employers are the "blessings" that I didn't realize I had until I really needed it.

Hugs to you all...
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#27 love2travel

 
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Posted 17 June 2011 - 03:19 PM

Dear Love2--Most of what you say about your feelings regarding hubby mirrors mine. I felt I was "ruining' his life. He is 10 years older than I am and retired and we planned on traveling. Everything came to a screeching halt. One day, ill out of my head, I tearfully told him he could divorce me; I would understand. I didn't want him saddled with a sick wife. My big bear of a sweetheart said quietly-- "Don't ever say such a thing like that again--you're my girl. We'll get through this together." I could cry at the sweetness of that memory. He is my rock --I always say that too! :) I feel bad about the things we have missed, but he doesn't care. All he cares about is me getting well. (and I am slowly but steadily :) )
My struggle has been inexplicable; I was so ill and in excruciating joint/muscle and burning nerve pain, 24/7, unable to sleep, lie down, walk, sit...out of my mind with cognitive dysfunction, insomnia and anxiety and every day was hell. He has picked me up off the bathroom floor when I was so spent from bouts in there and held cold compresses on my head to soothe the migraines. he has done it all-- dressed me, massaged me, and bathed me. My poor Mum didn't know what to do for me--she lives 4 hours away and could only cry with me over the phone. I'm the STRONG one in the family! They all lean on me--and I'm the baby of the family. I took care of her and my Dad for years when he was ill and dying...then, this HIT me. Just a nightmare. I lost nearly 4 years of my life. No drugs help me. I just live with it. And yes, if it were not for my guy, I would have gone mad. He says I saved my own life. I say I did it because of him. He has reassured me every single day and evening that we would figure this out-as I searched for an answer. He does not understand anyone bailing on a loved one.
We are beyond fortunate to have these men as our best friends/lovers, yes?! yes ;)

Thank you for your reassuring and touching reply. You're pretty amazing--I admire your courage --you are a warrior princess indeed. :)


Irish, your husband is a precious, precious man. I applaud his gentleness and kindness. It is a good reflection on your wonderful personality! I SO can relate to understanding if he would decide to get divorced - I went through that phase, too. The toll it was taking on my husband was huge - he had sleepless nights as well. It was not easy for him to drive all the way home from work a couple of times a day just to get me up and to the bathroom - many days were too painful to do it on my own. After pressing him on the issue once, he admitted that he grieved what we no longer were able to do but he was quick to point out that it was not me - it was the circumstances that we could not control. His main goal, however, was (and is) to get me well. My dear husband tells me almost daily how fascinating I am and how he is mesmerized by my many interests and hangs onto my words with rapt attention. It is wonderful to know without question I am so deeply loved through sickness and in health. Irish, you are so right that we have these men by our sides! I am exceedingly and abundantly glad.

One good thing that has come out of the pain (there are several, actually) is that I have learned so much more about life in general. I have been forced to take the time to reflect on myself, others, health and learning things. I feel somehow wiser. It is likely I would not have gleaned such a major interest in ancient history or geography and so on. Now I feel like a walking dictionary! :D Just from reading, reading and reading some more.

Irish, both of you are an amazing example of how to cope with/manage things that are beyond your control. It must hurt your husband dreadfully to know that the one he loves above all else has gone through soooooo much. I had tears in my eyes as I read what you wrote about your relationship. It is amazing that in these situations relationships either seem to shatter or become even better than before.

It's so weird but I, too, am the strong one in my family. My Mom (my dad died of cancer) and siblings feel I hold the family together (perhaps partly because I was with Mom during his sickness and death as I am the oldest in the family). I gather my strength from my faith and my husband and family but sometimes I have had enough of being strong and allow others to help. If a friend asks if she can bring something by, I am more than happy for her to do that. A few years ago I would have been too proud (silly, I know). The funny thing is, sometimes I put on a front when I am out in public (I don't like discussing my health with others except here!!) but otherwise it is not and that amazes me. What you see is what you get.

Trials build character and perseverance, that is for certain. That does not mean it is easy; of course it is not. But it can be amazing to have gone through such difficulties and able to experience true happiness and joy. Priorities are clearer. Now I feel better equipped to help other people who struggle. It is a miracle, actually. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#28 IrishHeart

 
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Posted 17 June 2011 - 03:23 PM

My heart breaks for everyone that has been deserted by their loved ones when they got so sick :(
We also thought I was dying. And I was suicidal. Told my husband to divorce me, I was totally ruining our lives. I was a total mess, lying on the couch after work every day just sobbing in pain. I thought I would definitely be in a wheelchair before last year was over, the nerve pain was SO bad and nothing touched it.
My best friend since I was 14 (I am now 42) said she wanted to come over and visit. I was not up to visitors at all. She insisted, she said we didn't have to talk, she just wanted to be there for me, to hold my hand. I thought that was SO brave of her, she did NOT know what she was walking into but risked it anyway.
The other day I told one of the owners of my company (it is a hubby and wife and I was talking to the wife) that I was feeling so much better and she STARTED TO CRY and came and gave me a hug and said it was the best news she had in a long time. So this horrible experience really made me realize that I am not alone. I am not at all trying to brag, sorry, just that I cannot even imagine not having people try to understand when things are so, so bad. I guess my friends, family, employers are the "blessings" that I didn't realize I had until I really needed it.

Hugs to you all...


I appreciate your kind words, Ada :) ---and I know your struggle was a lot like mine. (damn burning nerve pain!acck!) I am glad your best friend was there for you. My two best friends live 1300 and 2900 miles away--skype to the rescue! :) My Mum, sister--4 hours away, so it was tough for me. They wanted to be here but it wasn't possible.

I should make it clear that I do have other supportive people besides hubby, I was never truly alone, but that the few who I thought were my closest "peeps" all these years were not supportive at all. The ones who love me "best" I have learned-- are unfortunately, many, many miles away.

When I get well, I can always recruit new ones, I am thinking. Hey, I'm a lot of fun... :P :lol:
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 IrishHeart

 
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Posted 17 June 2011 - 03:41 PM

Irish, your husband is a precious, precious man. I applaud his gentleness and kindness. It is a good reflection on your wonderful personality! I SO can relate to understanding if he would decide to get divorced - I went through that phase, too. The toll it was taking on my husband was huge - he had sleepless nights as well. It was not easy for him to drive all the way home from work a couple of times a day just to get me up and to the bathroom - many days were too painful to do it on my own. After pressing him on the issue once, he admitted that he grieved what we no longer were able to do but he was quick to point out that it was not me - it was the circumstances that we could not control. His main goal, however, was (and is) to get me well. My dear husband tells me almost daily how fascinating I am and how he is mesmerized by my many interests and hangs onto my words with rapt attention. It is wonderful to know without question I am so deeply loved through sickness and in health. Irish, you are so right that we have these men by our sides! I am exceedingly and abundantly glad.

One good thing that has come out of the pain (there are several, actually) is that I have learned so much more about life in general. I have been forced to take the time to reflect on myself, others, health and learning things. I feel somehow wiser. It is likely I would not have gleaned such a major interest in ancient history or geography and so on. Now I feel like a walking dictionary! :D Just from reading, reading and reading some more.

Irish, both of you are an amazing example of how to cope with/manage things that are beyond your control. It must hurt your husband dreadfully to know that the one he loves above all else has gone through soooooo much. I had tears in my eyes as I read what you wrote about your relationship. It is amazing that in these situations relationships either seem to shatter or become even better than before.

It's so weird but I, too, am the strong one in my family. My Mom (my dad died of cancer) and siblings feel I hold the family together (perhaps partly because I was with Mom during his sickness and death as I am the oldest in the family). I gather my strength from my faith and my husband and family but sometimes I have had enough of being strong and allow others to help. If a friend asks if she can bring something by, I am more than happy for her to do that. A few years ago I would have been too proud (silly, I know). The funny thing is, sometimes I put on a front when I am out in public (I don't like discussing my health with others except here!!) but otherwise it is not and that amazes me. What you see is what you get.

Trials build character and perseverance, that is for certain. That does not mean it is easy; of course it is not. But it can be amazing to have gone through such difficulties and able to experience true happiness and joy. Priorities are clearer. Now I feel better equipped to help other people who struggle. It is a miracle, actually. :)



Okay, now you made me cry!

Adversity reveals true character, indeed! ;)

I could write a book (and I think I will--I have kept a journal this entire time and all my research notes) about what it took for us to deal with this "thing" that happened. (not just me--all of you valiant people on here!) I kept telling him I did not believe all the "misdiagnoses" --all the doctors who said I would have to live with the pain and illness--get a "scooter" to get around. huh?? No way! You don't go from being an active, vibrant person to a sick, emaciated mess of pain for no good reason!! I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me.

I diagnosed myself, by the way and had it confirmed finally through gene testing and a doctor who said "OMG! that's it!" Something in me said hold tight and keep fighting, but it was looking into those gorgeous deep blues he has every morning that gave me the strength to just keep going every day.

We were only married 10 years when this struck me down. But I am on my way back up. You are right--if we can survive this, we can survive anything. :)

That sweetheart even went gluten-free with me--at his insistence--and makes our bread.

Someday, I may be able to look at all of this horror with more "philosophical" eyes-- as you do now--but for now, it is still too raw and painful and I'm just not "There" yet. In time, in time. :)
Thanks again!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#30 Diane-in-FL

 
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Posted 17 June 2011 - 04:14 PM

I too have a very supportive husband. He has been fantastic. He loves to cook and has taken it upon himself to experiment with lots of different recipes. I haven't had anybody actually "bail" on me, but I don't have much family left here anyway. Some friends seem not really interested when I mention success with a recipe or something, so I've stopped talking about it. I think when we move to Florida later this year there might be some challenges. My husband's brother and his wife will want us to go out with them a lot and have holidays at their place and I hope they will understand my issues. I don't want to be a bother, but don't want to turn into a hermit either. :(
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