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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

People Who "bailed" When You Were Sick/crippled With Pain?
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53 posts in this topic

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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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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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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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!

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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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"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."

OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.

You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!

Hugs hugs hugs and calming, cooling nerves...

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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. :(

Diane, I think if you can educate the in-laws in a "fun way" somehow it may make it easier. Have them to YOUR place for a few delicious gluten-free meals and let them see for themselves it's "real food". I tell my family--hey, I am not a leper, you know!! and they laugh. :lol: Diffuses the fear and confusion a bit.

And PS...from Maine to Florida--that's going to be great come next winter!! Lucky girl!! :)

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"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."

OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.

You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!

Hugs hugs hugs and calming, cooling nerves...

thank you, thank you! --for sharing this because I felt the same way. My sister said "We need Dr. HOUSE!! someone has to help you!" I felt like I was being "poisoned" --like someone in a really bad mystery movie. We left no stone unturned.... yet, it came down to me. And a lot of research--on this site too! Go figure.

My nerve pain is calming down,although the doc says that could take years (ugh) and my muscle recovery is slow. I never lose focus--on my FUTURE, not the past. Thanks again, Ada!!

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Diane, I think if you can educate the in-laws in a "fun way" somehow it may make it easier. Have them to YOUR place for a few delicious gluten-free meals and let them see for themselves it's "real food". I tell my family--hey, I am not a leper, you know!! and they laugh. :lol: Diffuses the fear and confusion a bit.

And PS...from Maine to Florida--that's going to be great come next winter!! Lucky girl!! :)

Yeah, I can't wait to say good riddance to winter. And maybe having a Whole Foods Market closer than 3 1/2 hours! B)

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Yeah, I can't wait to say good riddance to winter. And maybe having a Whole Foods Market closer than 3 1/2 hours! B)

LUCKY!! I don't know which one would be more exciting for me...LOL LOL Best wishes!!

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The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.

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The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.

Aw hon, if people left-- it would not have been because YOU drove them away. This isn't our fault that we got sick, although sometimes, I have felt "guilty" that I was unable to do what I used to do. I know that's silly, yet it was what I felt. I don't feel that way anymore.

I have always been a "giver" as someone in the thread has mentioned--but I did it because I LIKED to do those things for others! I do feel my empathetic side is maybe "over-the-top" and perhaps I go overboard with "feeling" what others feel and trying to help. I didn't think that was a "bad" trait, though. I thought everyone was that way. :rolleyes: (nope)

You are so wise!! Depend on yourself.

Thanks for your thoughts! ;)

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I slept on it last night--all your thoughts --and you guys are very wise.

I always thought I was pretty independent but when I was ill, I found I was looking for comfort and validation. I agree--it would have been nice if the people I thought were my best friends had asked once and awhile "How are you? Can I come see you?" anything....and when I sent email health updates, I got silence.

One told me, "Don't send anymore unless there's something new. I don't have time to read long updates only to learn that nothing has changed." :o

That just about broke my heart!

I did get a lot of "I'll keep you in my prayers" a lot...which is very sweet and appreciated, but not the same as a loving hug or reassuring presence.

Maybe I have to adopt my hub and Richard's approach...stop expecting things and then there will be no disappointment.

I have learned a great deal from being quite ill---I am a survivor. I am strong. I am a fighter. I am a tough cookie :lol: I have faced hard times in the past and came out the other side...and I'll do it again.(and now, I know who I can trust B) ) These are good things to learn about yourself.

Thank you all so much for your thoughts!! It gave me perspective and a reassurance that I'll be fine --in spite of the disappointment. Love you guys!

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I slept on it last night--all your thoughts --and you guys are very wise.

I always thought I was pretty independent but when I was ill, I found I was looking for comfort and validation. I agree--it would have been nice if the people I thought were my best friends had asked once and awhile "How are you? Can I come see you?" anything....and when I sent email health updates, I got silence.

One told me, "Don't send anymore unless there's something new. I don't have time to read long updates only to learn that nothing has changed." :o

That just about broke my heart!

I did get a lot of "I'll keep you in my prayers" a lot...which is very sweet and appreciated, but not the same as a loving hug or reassuring presence.

Maybe I have to adopt my hub and Richard's approach...stop expecting things and then there will be no disappointment.

I have learned a great deal from being quite ill---I am a survivor. I am strong. I am a fighter. I am a tough cookie :lol: I have faced hard times in the past and came out the other side...and I'll do it again.(and now, I know who I can trust B) ) These are good things to learn about yourself.

Thank you all so much for your thoughts!! It gave me perspective and a reassurance that I'll be fine --in spite of the disappointment. Love you guys!

You are awesome! And inspirational. We love you too! :)

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You are awesome! And inspirational. We love you too! :)

and humbled, now,too..gee whiz, wow....thanks Diane...XXOO

Hey...how's the lobstah in buttah up theya?? (I think I told you this..I grew up in Bahston) :lol:

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Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

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I comppletely understand... I have been ruled out as the outkast and biggest complainer in the family and I always feel like they don't want me around bc of my special food needs. My so called "best friends" ditched me to live there own lives and not care once to check on me. It makes me feel like I am not good enough and they make me believe I am just a hypochondriac but i know the pains and feelings I am going through. People are just ignorant anf writing them off is the best thing to do bc what is more important is YOUR HEALTH!!

~Celia

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Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

:lol: :lol: :lol:

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I comppletely understand... I have been ruled out as the outkast and biggest complainer in the family and I always feel like they don't want me around bc of my special food needs. My so called "best friends" ditched me to live there own lives and not care once to check on me. It makes me feel like I am not good enough and they make me believe I am just a hypochondriac but i know the pains and feelings I am going through. People are just ignorant anf writing them off is the best thing to do bc what is more important is YOUR HEALTH!!

~Celia

You are no hypochondriac!! Sorry anyone treats you that way. We all know this thing is for real, hon. I wish you lived next door, you could come here for dinner and hang with me!! :)

When anyone says "you are making things" up? you say.."Really? What is my motive?" It's not like you're a little kid trying to ditch school, for pete's sake....that will shut them up.

Ignore those who doubt. In time, you will be well and you can say "I told you so!"

And if they are family, chances are, their health will take a dive and you'll look like a genius.... ;)

Celia..I see you are a "newbie"...if you need any help, please ask. :)

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Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

I can still eat Lobster & buttah! I can't eat sticky, mushy white bread! :D

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I can still eat Lobster & buttah! I can't eat sticky, mushy white bread! :D

amen to that sister....Hooray for lobstah and buttah!!...curses :angry: on sticky white bread :lol: :lol: :lol:

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and humbled, now,too..gee whiz, wow....thanks Diane...XXOO

Hey...how's the lobstah in buttah up theya?? (I think I told you this..I grew up in Bahston) :lol:

I am a heathen.....I grew up on the coast of Maine and hate lobster. :lol: How about those Bruins?!

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The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.

Well said, bigbird.

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IrishHeart -

I can relate to what you have said here. I've had a similar experience with my family. They don't want to hear about it and don't want to deal with it so now I'm not invited to family get together's because of that 'gluten thing again' :angry: . My immediate family is good (my sons) and my Mother tries but she is stuck in her own little world. I have friends that while they don't understand completely they are trying and that makes me thankful.

I think that those that walk away have other issues that we can't begin to see until something happens. You seem to be a strong woman as I am but even us strong one's can be hurt by other peoples actions... Hang in there

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I am a heathen.....I grew up on the coast of Maine and hate lobster. :lol: How about those Bruins?!

Joy and celebration---it's been awhile since the last Stanley Cup!! ;)

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