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Old 06-13-2008, 07:04 AM   #1
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Do you have your families support when it comes to the health boards

I have been wondering about this for awhile. Do you all have your families support & understanding when it comes to using the health boards?
My husband was abit leary at first but now he actually takes an interest at times. He knows this is a very personnel thing for me & never invades my space so to speak. I am surprised at times how he really respects opinions that are offered to me. I am so appreciative of that & realize everyone may not be so lucky. As I said it took him abit, had a hard time with the fact I was talking to strangers. I believe he realizes the support is heaven sent & really apprecaites that.
I was just wondering how other families feel about it. Sammy

 
Old 06-13-2008, 07:53 AM   #2
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Re: Do you have your families support when it comes to the health boards

Hey Sammy,

Good topic!

My Mom sometimes will say to be careful because she does not want to to hear everyone else's experiences and then think I will have the same. Other than that she thinks it is a good thing, and has commented that she does not hear as much from me sometimes and then asks what I am doing to get through. I tell her that I love my on-line support group.
My 12 step sponsor thinks it is awesome that I have a good support group here. She thinks it is good because I am interacting with others who truly understand the affects of chronic pain.
Generally speaking both my family and friends that know I have the on-line support feel that is helps me a lot and that I should continue to do so.

My doctors, PM, Neuro, the Pain Psych. all think it is great as well. They all have actually encouraged it. But they to warn to beware of those who feel they are "docs".

On many many occasions i have told family and the Docs that the on-line support I go to there are no people who are like that. I just tell them we are here to support one another. We don't paly doctor!
Like I said everyone thinks it is a great source of support for me.

Thanks
Chrissy

 
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Old 06-13-2008, 09:25 AM   #3
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Re: Do you have your families support when it comes to the health boards

My husband is extremely supportive. As a cper or as anyone with any illness or disease it is so important to have that outside support. Lets face it our spouses and family do not always get it. Last night, when I had a breakdown and started sobbing my hubby sat there and just hugged me and said how sorry he was. That is not what I was looking for.....I needed for someone to really understand what it is like to have pain each and every day. You all get that and for that I am thankful. Don't get me wrong that hug was nice.

This board is extremely safe since there is not exchange of personal information between users. This makes my hubby feel more secure about the t ime I spend on healthboards.

 
Old 06-13-2008, 10:05 AM   #4
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Re: Do you have your families support when it comes to the health boards

Aww I wonder how many of us say to our loved ones " you just don't understand", although we know they love us, we still feel isolated or alone, trapped in CP that we have no way of describing to others. I have to force myself out of bed some mornings, have refused to stay in bed, wont do any good for the pain anyway. My husband tries. I have been going down hill lately & it scares him. Bless him he waits to see how I am before leaving or calls. He worries I wont be able to use my arms or hands. I go on this board as I wait for the meds to kick in & he leaves me to it. He knows that is my daily support, my push to start my day. He has come along way. Little by little he is getting to know you all. Lets see he will ask what is Marcia's opinion on certain things, to cute! How chrissy is because she was one of the first I spoke to, he knows Pepper is so good hearted & welcomes everyone. He kept up on the whole "Crazy doctor that made (who was is now,,,) go for treatment" he was even givng his opinion & so on... Most of all he knows referrs to you all as my friends.
Never thought he would ever do that. Yet he gives me my privacy, always. At first he did not like it, but oh how his opinion has changed. I need him to understand how important you all are to me & he does. Sammy

 
Old 06-13-2008, 10:05 AM   #5
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Re: Do you have your families support when it comes to the health boards

My hubby and sons are very supportive, My husband has used other areas of health boards himself and so understands how great it is to have peer support.

2 of my doctors have known about you all, and gave me their support, and one even asked for the addy to give a patient in CP who was having a hard time adjusting, Of course I have no idea if that person ever came here to us, but I hope so!

About people who think they are doctors, the mods are great at weeding those kind of posts, but it doesnt hurt to be reminded every once in a while that everyone who posts here does so as a peer only, no ones advice is any more than their opinion, or what has worked for them. To me the emotional support of knowing there are other people out there who really GET it, and understand what constant pain is like for us, is much more important than any medical advice, although I have gotten great tips here, and I know much more about medications than I ever would have if not for you all!

I think about our members every day, wonder how this one or that one is doing, when I have an appointment or am nervous, I think about all of you being there with me in spirit and it really helps, I have been much more assertive and proactive about my medical care since coming to this board, and my life has improved because of it.

Hugs, Fabby

 
Old 06-13-2008, 10:42 AM   #6
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Re: Do you have your families support when it comes to the health boards

My only family living with me doesn't like it when I spend too much time on the computer. He doesn't understand any part of it. The only thing he knows is his treats are in the closet near my desk. Sometimes I think he knows when my pain is way up but other times he is only worried about himself. Like when is supper or when is walk time. I'll tell ya these Jack Russell Terriers are something else!
Fred

 
Old 06-13-2008, 10:55 AM   #7
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Re: Do you have your families support when it comes to the health boards

you all are making me cry -- i guess I am emotional today.....sniff, sniff

Steve, would your wife have a problem I told ya I loved you?

I don't think I would like my hubby reading my threads. Not that I am keeping anything from him but I feel like I can really say how I am feeling and no one will make judgement.

 
Old 06-13-2008, 11:21 AM   #8
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Re: Do you have your families support when it comes to the health boards



Cute thread. I've been on 3 support boards but not for PM. My husband is fine with it.

 
Old 06-13-2008, 12:18 PM   #9
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Re: Do you have your families support when it comes to the health boards

This is a good topic. I have been so greatful for everyone here, and this site has helped me with my battle with chronic pain and the lonliness of the day. I am 31, and have stayed at home with our 2 boys, they are 5 and 2 1/2 now. My official battle started September 04, 2007, and as I got sick my marriage seemed to go downhill. I am not sure why it did, has anybody noticed that too?

I joined here in January, I think, and I can't explain to anybody how helpful it was. It was dead of winter here in Maine, I was going to the doctors every week, going through appeals with insurance companies, my pain was not under control, my husband was going through a change in life as far as religion and his life, and I did not have any friends. My husband was aware of me being on here, and me having some friends to chat with, and I never was on here when he was around. It was usually in the morning, and afternoon, when he was at work. My husband did not agree with my doctor's choices of pain control, and my husband was calling me an addict. It was horrible and so many people here helped me get through that time. My husband might not grasped the pain I have everyday, and he gets upsets that I cannot keep up with the house, and keep it neat, organized, and tidy. I have some days that are not good, other days that are not so bad, and every once in awhile a good day where my pain is under control, and my husband is nice, kind, loving, and supportive. I love those days and they keep me going, even if they are 1 out of 14, that one day keeps me going right now, hoping that it will get better. I did not plan to get sick and have major facial pain, and fibromyalgia and major body pain. It was way too much.

Then things blew up. My husband I guess got bored at work, and went on here, and printed out everyone of my posts. He has been a big advocate for keeping everything that happens to ourselves, keeping your dirty laundy here, not telling anybody anything, and I had let some of that out, and asked for advice here. My husband was mad, and threatened to use what I had written against me in divorce, like my talking about medication, saying I had lied about him (which I swore on my mothers grave, I had told the truth), he was going to take what I had written to his pastor, and then he said he had 2 doctors willing to testify that I was overmedicated, doctors I had never seen, and then through the divorce, he would go for full custody, and have to tell the boys why he had to take them away from their addict mother. I am their mother and I take care of them 99.9 % of the time, yes, my husband supports us financially, but I take care of our boys,and I try my best to take care of our house. I take my medication responsibly, and if anything I undermedicate, and am in pain a lot. I do like to sleep and try to get 8-9 hours a night, it is hard, my husband works 3 nights a week, and has a different sleep schedule, he goes to sleep when we get up, and gets up from nap when we are going to bed. We do not have much time together, and golf just started, so he golfs 3-4 times a week.
That was the last really extreme hard time. I was so torn, I knew I had done nothing wrong, and knew I could not do this anymore. I drove by an attorneys office 6 times not knowing what to do. I loved my husband and will stand by him no matter what, but I am battling chronic pain, trying to do my best, it is not enough, and I have let my husband down, Unfortunately, I have gained weight and I feel like a failure to him. I am trying to pull myself up by the bootstraps. We are going through hard times, and I believe we need to get through them together, love each other, support each other, and just know we can do this together.

So for a while I did not dare come on here, he took the computer away for a couple of days, and then made a password, so I could not get on, but then he changed his mind, and I was able to use the laptop. I love being able to talk to other people who are going to the same thing I have or are going through. I do not have many friends, and if I do, I have to be very careful. My husband does not believe in talking about what goes on in our marriage.

For a couple of months, I felt a huge weight had been lifted off my shoudlers when I was able to talk to other people, people I would never know, about health issues. It was nice to let it out, I never had any idea it would hurt my marriage. My husband plays online poker almost everynight, most games starting at 7 or 8 and he plays until 3 or 4 a.m, so I just felt I had found something for me, some people for me to talk to. There are days I do not talk to anybody, and I see my husband 1/2 hour in the morning and 1/2 hour at night, so it can be lonely when you only have a 2 and 4 year old.

I have blabbed and blabbed. I am sorry for the long story, and as I have read through the posts I feel that most people have support for being on here and I am glad, it is such a great place to reach out and talk to people who are going through what you are.

I know that through my battle with this illness and chronic pain this, the Healthboards, have been one of the positive parts of going through it, along with my boys.

 
Old 06-13-2008, 03:18 PM   #10
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Re: Do you have your families support when it comes to the health boards

Kass,,,,,,,,,,,,,, you have actually made me speachless............
I am here thinking how annoyed and hurt I would be if someone had gone and printed off all my threads to use it against me..... that is truely an invasion of ones privacy husband or no husband doing it. If post comes in for me with my name on it, my husband never opens it....... post comes in for him I never open it...... (I know its a bill !!). I think you have to respect the privacy of people. Have you considered changing your posting name?

I have never posted anything that I am ashamed or embarrased about, I would consider my posts to reflect the mood I am in that particular day and if I am finding it hard getting through the day I will say it, or what is annoying or hurting me.. etc but I would never expect any family member here to read my posts. My sister knows I go to the healthboard but never asked to see etc.... My husband knows, I am on the laptop alot but never asks to see what I am typing about or I with him.(The only time I mentioned something to him as he happened to be in the room and that was about me thinking the person was talking about their neighbour and it was a bird.) He knows I met a friend that had surgery around the same time as me and I email daily and Instant message, and we phone each other, but he doesnt know which board, but does ask about her.

It was my husband who encouraged me to find a support group to help me deal with my pain, as he said he doesnt know how he can help as he doesnt have answers and he wants to help and feels frustrated that he cant help me with the pain. He had suggested a support group that meets ........ but I was totally against that and having to get their and sit for the duration when you cant sit for long ............. So this board is great and in the comfort of our own home. Sorry for rambling, I am glad that you got your laptop back and you are emailing again.

Round 1

 
Old 06-13-2008, 04:06 PM   #11
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Re: Do you have your families support when it comes to the health boards

Hubby knows i come here real often and says nothing. He is really suppoertive. I say how i am feeling on here and can be honest about how i feel and he is so glad i dont try to explain it all to him when he does not understand, that i can geet feedback from you who do know. I dont know what i would do if he came on here and read mine or printed them its nothing but how i REALLY feel and dont tell him. If we have had anything in marriage i would never say anything.

I love all the support i get here and do love everyone here dearly!!

 
Old 06-13-2008, 04:24 PM   #12
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Re: Do you have your families support when it comes to the health boards

"About people who think they are doctors, the mods are great at weeding those kind of posts, but it doesnt hurt to be reminded every once in a while that everyone who posts here does so as a peer only, no ones advice is any more than their opinion, or what has worked for them. "
-Fabbers

Fabby, I totally agree. I dont have ANY problems with posters saying what has worked for them, but I do have a problem with posters who answer posts giving orders like a doc would, ie: take blah, blah blah, and blah bla...THAT bothers me alot.

Kass, your post broke my heart. Im so glad you have your loving boys, and have gotten back with us, and have found the support you deserve. I have to say that my small son is my biggest support. I hope to see you all of the time~
xoxoxox,
IZZY'SMOM

Last edited by IZZY'SMOM; 06-13-2008 at 04:27 PM.

 
Old 06-13-2008, 04:42 PM   #13
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Re: Do you have your families support when it comes to the health boards

There are so many aspects of this board. Sometimes it calms us, educates us, supports us, makes us realize it could be worse. We share our happiness to., our fears, our hopes. Pretty much all the things that make up friends.
Oh the mistakes I could have made without some of the advice here.
Lets face it this is a tough, tough road & we walk hand & hand very often.
I know alot of us walk in our doctors offices armed with knowledge & perhaps a bit more confidence. We dont have to play doctor, but if opinions are asked for we give them & experiances shared can really help.
Kass I would love to just reach out & hug you & just keep on hugging you. We understand, everyone is different.
Steve we would all be pleased to meet your wife.
Fred my friend you are a hoot. You & your dog, every replace the garden?
My sister has a jack russell & he is aways up to something. You know Fred I so enjoy you. The offer always stands to hit the road.
Pepper you just have a heart of gold my friend.
Everyone here has something that is so unique in personality, you know?
Bless you all, I am really so very appreciative of having you all in my life.
I am glad my husband supports me & understands what this means to me. For me this helps me to be a better person. Sammy

 
Old 06-13-2008, 05:11 PM   #14
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Re: Do you have your families support when it comes to the health boards

I have my family, and I have my pain family. You all are my PM family, ,and I hope you all know it. tThank you to each and every one of you~
Great thread, Sammy~
xoxoxox,
IZZY'SMOM

 
Old 06-13-2008, 07:49 PM   #15
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Re: Do you have your families support when it comes to the health boards

Great thread Sammy - I really did not know that the healthboards might be an issue for some - Kass, my heart goes out to you and any others not getting the support they need from loved ones - however, this is the place to get it, along with a good education in pain mangement Peace Aver

 
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