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[MakinIT]

I haven't talked in a while, have been on just snooping around...but didn't want to yap for yapping sakes. I've had to process this new little piece of information I received on Monday and am just frustrated about because only 2 weeks ago, I finally had the AHA that put me over the top and made me accept my IC, my inability to work, and the fact that i could rise above it and be happy.

I had an injury to my neck when I was a child. it has worsened over time but I just figured "eh, maybe I'll have to get a surgery like my husbands to correct a bad disc" My arm was going numb and weakening, My head is so weak it hurts to hold up and my ability to do simple things...(say, scrub up a stain on the floor), I have to rest during a 30 sec task. Anyway, I had an MRI done. Turns out to be severe arthritis, with spurs on my C-2 through C-5 with C-4 being the worst. Then it moves down into my back. T-2 thru T-4. I'm just starting to learn to play the guitar ( a life long dream....figured I was going to do stuff I always wanted to do) It hurts to put my arm over the body of the guitar now:( and, of course, I'm still dealing with pelvic issues which have worsened since I fell on our familie's camping trip.

I'm in so much pain now, all over my body, (Fibro, IC, Arthritis, Sjorens, allergies) I just want it to be gone. Why, when I finally stopped fighting this and have accepted and started to be happy, thus my family happy, has my pain been ratched up so high? These are Rhetorical but I feel like the rug has been pulled....I don't have the energy to make dinner yet I have 6 people waiting for a meal...and one is a vegetarian;(I've told her she's gonna start getting alot of melted cheese sandwhiches.) Laundry is always a fight, my husband went wacko at midnight last week and went on a cleaning binge (his scary ones) He was freaking out, asking what "we people did all day". For the first time I just got in his face and said "we" (meaning me) attempted to clean up his crap all the time, do all the household chores, ect. When I mentioned that Kelsey was leaving wrappers and food all over the house and outside he said "so all of this is Kelsey's fault?" I lost it..He was doing an institute with teachers that week so his papers and books and packets were everywhere. We have been trained not to touch anything so since his stuff went EVERYWHERE it was kinda hard to keep clean. But I said "kelsey models after you and you never put away your dirty dishes, your laundry, wrappers, nothing...And I notice you can't find much of a mess in the kitchen? Caitlin and I just did a top to bottom scrub down 4 days ago." (Like soffets to grout in tiles) That arguement occurred when I still was ok in the pain dept in my neck. It hurt but I could manage. Now I'm really messed up and don't know how I'll do. I don't know how to explain to husband...I mean make him understand. He views this all as an "obligation" not a loving thing to take of a person he promised to love and care for. Even if we divorced he would make sure I was never out of medication or hungry or whatever. I'm an obligation. But he views this as a horrible weakness on my part, my sicknesses. Even though not my fault.:( :( When do I get to be happy? I was happy for a few days....

Oh well, asi es la vida....

[hdb1982]

When my hubby was giving me the " you use this disease as a crutch" lecture I simply said that's fine, lets go get a nail, jam it into the head of you penis all the way into your bladder. Then we'll have sex, run the sweeper and get on our hands and knees and scub the floor. If you can do all of those things with such horrible pain than you are right. I am using this as a crutch and I will kiss your a## and be the wife I am "supposed" to be without any complaints. Sond like a deal? He hung his head in retreat and left the room. He never again griped about chores not being done. Maybe not the most sensative approach but that's just me.

[GriffsMommy]

Oh wow, that's horrible. Is there anything they can do for your arm and neck? I don't know anything about that stuff but it sounds horribly painful! I can't imagine having to deal with that pain with all the other pain you have on a daily basis. I swear to god if I felt that bad and my husband complained about the house not being clean I think I would use what energy I had to pop him one. However, my husband doesn't usually do that. My step kids are teenagers and they do the majority of the cleaning now. Actually as I type my step son just set the table for dinner and husked the corn on the cob. My hubby understands that I just can't do everything on my own and if I tried I would be no use to him in other ways that he would want if you get my drift. He understands that the kids make a large percentage of the mess and he makes them help clean it up. I honestly don't know what I would do about the, but if your husband wouldn't be willing to make them do this kind of stuff w/o you there helping them then that won't work. I hope that you can do something to get this pain under control, and not just so you can make dinner for everybody but so that you can live some kind of life. :grouphug:

[tigger_gal]

:pray:

[MakinIT]

Just had a real nasty fight with my husband. Am very very disappointed and hurt. He went up to a family friend's who has property in the Columbia gorge and watched a Fire and played guitar/music...ect...and he knows I love that stuff. He said, and I quote " you can't hack it, you're too tired, and no one wants to hear your life story..", I don't talk about myself anymore. I've become quite reclusive and sick of myself. I don't want to deal with other people and their "sympathies". I'm sick of it. He ****** me off and hurt me so bad I just cried and cried and cried, and then I followed him and told him he was leaving me traped in this house so he could out with his brother for no damn reason whatsoever. I guess after I left, Caitlin just lit into him. So, I'm tired, my eyes hurt, and I'm sick. I don't need this ****. I feel like some embarrasing piece of crap he doesn't want to be seen.

[christinaw]

So sorry - I've been where you are with my own husband . . . it took a long time to get through the resentment that he had deep down for my illness. Men don't talk about their feelings, they just want to "fix it". Women are just wired differently than men - not bad on either part, just different. I am sure that he feels helpless to help you and mourns the loss of his "old" wife and your life together. It is tough for them to get through, too, just as for you. I know how hard it is to stay home 24/7 and miss out on life. Especially when the rest of your family wants to go and feels good to enjoy being there. It was hard for me to accept that sometimes I just have to stay home but let them go without me. I always felt left out and alone when that happened. But, over time I began to use that time to rest, read, I took up scrapbooking, or take a bath, or just sleep - without feeling guilty for napping because no one else is home. I had to accept me for me before I could expect my husband to do so. It is hard, but it is your new life. It can become enjoyable once you weigh the things you can enjoy against the things you can't do anymore, and then find ways to fill in the gaps. You can do it - just take things day by day, hour by hour. Enjoy what you can on good days, and give yourself permission to rest on the bad days.
I am so sorry for your pain. Are you doing anything besides meds to help?
Sending hugs your way - and praying for you. Keep the faith!

[Berkshire Road]

OMG, Tracey, how much more can possibly happen to you? I am so sorry to hear about all this. You've probably got a viscious loop going now -- stress makes pain worse, pain makes stress harder to deal with, therefore stress builds up and makes pain worse... I don't know how you break it. Maybe a solo vacation would do you some good, would something like that be possible?

I too can understand how you feel about your relationship with your husband. Sometimes I think he sees me as just another burden in his life. Years ago, he said to me, "You will always be 25 to me." Now I don't think he can even see vestiges of the 25 year old in me. But we're working hard, in counseling and on our own.

I also know just what you mean when you say, you've finally reached acceptance, and now you're dealing with yet another problem. I felt like I had pretty much walked through the fires, knew where I was in life and accepted it, and was starting to build a different life around these new limitation. Then out of nowhere, my fibromyalgia which has always been very mild, kicks in and has me aching in every joint and muscle in my body. Some days I look up at the sky and ask, "Is this a punishment, or a test?"

Please, 'yap' away anytime. That's what we're here for. You are NOT alone.

[MakinIT]

Thanks for both of your replies: Christinaw, we've discussed this and I know this is the issue and I've taken it to account...both the wanting to fix and the messing his life up as well...that was kind of the big breakthrough I had this summer. I felt much happier and we actually began to become a family and we talked. But then this issue with this arthritis....you know...I just want to be held untll I can cry and get it out of my system. Instead, I'm faced with a robotic man who looks at me and pushes me away with his stare. he then turns and leaves. I have no outlet, I have no place to put this pain (emotional). Then he pulls this kind of crap, knowing how I feel about these activities, and he leaves me out. That would have lifted my spirit so high. I love sitting around campfires, listening to guitar playing and singing. I just want some peace in my life. I've been a good person, I don't believe in fate though so I don't supposed it's rational for me to expect a tit for tat...But dammit.....I'm gettting along with my younger daughter, and no one believes me, except my younger daughter. My older daughter could see I was I was agony stuck in traffic the other day...both my IC and my back...we were supposed to stop and get her some makeup although she had enough to get her through the night. She finally says "mom,we can skip the stop" I said "thanks, honey" Then she proceeds to bawl and talk about how crappy her life is (she's 17 1/2...doesn't work, we still buy her **** b/cause her dad doesn't think she should have to worry) she flung her stuff to the floor and said "why is my family so messed up?" (I had just spent 200 bucks in school stuff on her, 100 of which were 2 expensive Vic. Sec. Bras we can never get in her size!!! And we still weren't done.) I just looked at her, my face was white from pain , and asked her "so, you want to stop?" "well, yes" I told her too bad, I couldn't, my arms were going numb. She cried the rest of the way home. I will say, her dad chewed her out for her behavior in the car. I didn't go complaining, he came in asked, and I just gave a sketchy outline.

I just plain hurt. If I try to wrap my arms around a load of laundry, I feel my back make a sickening "crunch" like I've stepped on doritos's, and I can feel stuff moving around in there before I get a final Ka-klunk. Then. I don't want to stand because it will hurt like hell. I've always had a surplus of Oxy cotin..This month will be a stretch.

Thanks.

[sandymarie]

I do hope you get to feeling better. If it helps at all know that you do not at all deserve being mistreated for being sick. You seem to be a good person and we love you on this board. If your husband isn't happy with your housework and the way you do it. Tell him to hire a maid so everyone can be happy. You are his helpmate not his doormat. I can say this bc I have been there. I still don't have a maid and never have, but we are human not robots. We spoil them, and make monsters and then they don't think we can get sick b/c it might put somone else in thehouse out. Well let them clean up after themselves. Each one cleans after his or herself and then the house will stay clean. I found that I have to cook in a crock pot and if I cook it is something that is easy. Let them eat dry beans for a while and you rest. I saw a joke a while back about a man that made a wish that he could take his wife's place for just one day and she could do his job. Anyhow he worked all day in the house, did all the things that his wife normally did, cooked breakfast, lunch. and dinner. he ran errands all the errrands, washe the clothed, bathed the children and bathed the pets. Besides he cleaned the house top to bottom and at the end of the day he ask God to let him go back to being himself b/c he could not handle all the things his wife had to do. God in turn said. I would be glad to help you but there is one problem, Last night you got pregnant, so you will have to continue for at least nine more months. It goes without saying he was very sad.LOL I wish I had the joke, I cannot do it justice, but you get my drift. They don't get it that we are the maid, babysitter. nurse, doctor, accountant, laundry women, sex partners, cooks and errand runners. It is just tooo much on you. It does hurt. We all want to have friends and have a social life also. I know you are tired, please make them let up on you. If they don't understand, be proud of yourself and make you happy with some things you want for you. You are worth fighting for yourself. My prayers and thoughts are with you. Hang in. It has to get better. Keep your faith that God is on your side. You did not choose to be sick.

IC SISTER

JJ:grouphug:

[long journey]

My life partner is a woman. There is no way that anyone who doesn't have IC can truly understand, and yes she gets frustrated, ect. but I am so glad that I don't have to deal with the female/male communication issues... my nephew (14) lives with us and they have both really stepped in to help. Sometimes they get tired of it... but we really try to work together. Sometimes the volume of the conversation gets high. I do miss some of my nephew's events and we all don't go to do the many things that we used to. I've been very open to them about what this feels like. I hope I am helping to raise a more sensitive guy than what is the norm these days. He is popular with the girls, and I think the fact that he is conversational, nuturing yet still a true "nasty" little teenager (whew those socks). They've been good about letting me do things that I can, when I can and doing it when they cannot. It's taken a lot of educating them on my part.. not leaving everything everywhere all the time, rinsing dishes, picking up after the dog and such. My brother has given me some insight into how to teach some men (like him) what this IC is about and I think the nail up the penis is a perfect analogy. I tell my "home" family what each procedure is, graphically, so there is no question what my path is. My code for other people, when they ask how I am doing, is "lets have a happy conversation" If your husband will read, online or in print... try to get something in front of him about what you're dealing with. My nephew has become a decent cook, my partner has taken on tasks that she hates (grocery shopping, house cleaning) and it really helps.

[IC SARAH-CPP]

I am so sorry you are going through all of this stuff. My husband can be pretty difficult about housework too b/c we are both clean freaks, obsessive compulsive you know, but it gets too hard to keep up on stuff sometimes for me. We got in to it the other day b/c I was sick and he told me I was " getting behind on everything here" Well I was mad so I got up and tried to clean and was so dizzy I nearly passed out! It makes me want to just scream.
I think you have been asked this before, but have the 2 of you considered counseling? If your hubby is open to it, it might be a good idea.
As far as your daughter, I kinda just think it is an age thing. Girls do seem to grow out of it sooner though so maybe she will be okay in a couple years. I constantly apologize to my mom for all the selfish things I did to her when I was younger.
Small consolation though it is, you can always come here to talk with us :) We will be here to listen.
Hang in there hun.
Sarah

[MakinIT]

you all are so sweet and nice with your words of wisdom re: family issues and chores, ect...it goes so much deeper than that though. it is such a reason for him to get angry. It has just made me, I don't know, just royally sick about the entire ordeal...I spend an hour with my shrink today, I told him my husband would never divorce me because he considers me an obligation. and I don't want to be anyone's obligation. However, right now I have todeal with this damn new thing in my neck, I can't deal with his BS and I need the security of Insurance. So, my doc asked what I was going to do, and I said I was going to tolerate him as much as I could until I get my situation undercontrol in my back.

BTW: got my MRI's and report today. Do you know they put them on DVD's now? kinda cool...anyway, had to take my oldest to the GP, my doc who handles my stuff and I told him I had all the info, he wanted to see it, and he 's sending me to a nuero b/c I have a spur coming off my spine. He says they can remove it , but it won't fix the arthritis, just lessen the problem for awhile. Great. I could even see it on my spine...

[mom_in_ma]

It's tough....I've been struggling with this for awhile...trying to come to terms with my life and living it the way I can. Here are some things I've found that have helped:

1. Being really honest about when I'm not feeling well and explaining how I'm really feeling to my dh. It's helped tremendously because I'm not bottling it up inside and then bursting and taking it out on everyone.

2. A really good therapist to help me live with the chronic pain and anxiety. I see him weekly.

3. This is going to sound quite priviledged, but you need to know we are definitely not rolling in cash. But, a good cleaning person! When I finally admitted to dh that I couldn't keep up with my job, being a mother, cleaning the house and being sick, he found a house cleaner the very next day! She comes every two weeks and it's made a big difference.

Of those three...and all are really important to me...the therapist is by far the biggest help in my life these days.

[MakinIT]

he won't do counseling. he talked about it for a while, then I realized it was only to fix me...but that was ok. I thought if I could get him through the door...but he is now grumpy and "too busy" for that stuff.

He's home now, going to bed soon, I'm going to bed because I'm tired..don't know if we'll talk.

Thanks.... Oh I see a therapist bi monthly ....

[sickofmybladder]

Hey I'm a "newbie" but completely understand - I was diagnosed about 3 weeks ago and my symptoms are definately increasing (I've had pain for over 18 months)- and no my husband doesn't understand. I know it's hard - but I told him last night - that I am doing everything in my power to feel better - (i.c. diet, meds, doc appts. etc.) and I'm still working full time - that I don't like having to come home after work every day and grab the heating pad and head to bed anymore than anyone else. I don't know that it sunk in with him - but it put my "weird brain" in a better place -

This is not our fault - we are not seeking attention or trying to be an obligation - and stress does make mine worse - as hard as it is - we have to focus on our health - and just the constant pain is depressing enough - without the pressure from our spouses -

Just do your best to remind yourself of that - that's all I can do at the moment -- I will be thinking of you.

[MakinIT]

he, once again, went to bed on the couch last night. He said it was to watch the eclipse (bull****) he was in a "relaxed" mood so i asked him "are things cool with us?" he laughed and said what? I repeated, and he said it was too late tohave that conversation (it's always too late, too busy, too tired..whatever) so I started to leave but turned back, (he had already pulled his hat over his eyes) and I said " While you lay there pondering the world ask yourself this, why do you find it easy to forgive your brothers (who have done some really crappy things to him) your sister, your friends....but any minor error I make you can never let go of..?" He pulled his hat up, looked at me, puzzled (he is an extremely intelligent man, I think that's his problem with people skills but he gets along with children so well) and he said "I've never really thought that way, but you're right.....I don't know...I will have to think about it" I just walked away from him. He came to bed a few minutes later but we didn't speak. I just pretended I was asleep. See, I think through the grapevine it's gotten back to him that I've *****ed about his moods and treatment toward me over things, and if there is one thing he clings to, it is his public appearance. and he will not want forgive me any complaints. Now...it was ok when I was pregnant and was in preterm labor/severe eclampsia (I begged the doc to let me stay home) and she did during the last week before she would induce me if my baby wouldn't come (which she was trying, on and off) She told my husband I needed 24 observation for the week and had to get steroid shots in my butt every 12 hours at the hospital to boost kelseys breathing ability (she was 6 wks early) On our way home I said "gee, I'm sorry you're going to have miss your weekend with Mike" (his best friend in Eugene, about 100 miles away...we also had a 5 year old) Mike was his best friend get drunk buddy. Roger looked at me like I was insane and said 'what are you talking about?" I'm dropping you off and will be back Sunday night. I told him "did you hear the doctor? I'm not supposed to get outta bed except to pee or go to the hospital every 12 hours for my shot...I'm not allowed to drive" He told me to call my friend who had a 3 day old baby, and another friend with a couple of little boys. Do you know how embarrased I was that I had to do that? My doc called over the weekend, and see if all was ok. I was almost ready to cry. But said nothing. Then when he came home he was ****** he had to take me to the doc for my shots. But that's ok....I can't be forgiven for small venting of frustration. But he pulled this crap all the time. Course, once the kids were born he was awesome to them. How many of you got flowers or a gift when you gave birth, from your husband, Mine didn't say ****.

anyway, gotta go. I'm really just frustrated with him right now, he is not a terrible demon, he is clueless. he honestly doesn't get it. He never has.

Tracey

[IC SARAH-CPP]

It is hard for me to read this stuff without wanting to come over and try out that nail up the pee hole thing on your hubby! I want to say a bunch of stuff I wont b/c you already know how crappy he is being to you.
Have you tried telling him what a bad example he is showing to your daughters? Since he cares about kids so much, maybe that would sink in with him. I dont know. I personally think a trial seperation is a very good idea for you. I know that is easier said than done but it doesnt seem like anything else is getting through to him.
I hope things improve a least a little for you two,
Sarah

[hdb1982]

I too have brought up our daughter as a way to get through to my husband. I'll say " when Katie grows up and marries some jerk who mentally and verbally abuses her what are you going to say when she comes to you crying? You can't get mad at him or her because this is what she grew up seeing so this is what she thinks is okay." So unless you want to see her with someone who treats her like you treat me you
need to change your attitude.

[MakinIT]

Have given that one alot of thought. My dad was an asshole.I swore to marry a man who loved his children, even at sacrific of his wife, b/c the chlldren would get so messed up. I met Roger and he was amazing with children. He was amazed by how we agreed on things and on my beliefs with children. But you are right. My daughters have to see a happy marital relationship. sorta sucks. He is so good to them. He has actually been very very good since I asked the question the other night about forgiveness. He has obviosly thought hard about it and he left me note on my pillow that said "can we start over, you and I, with just a laugh?" It was attached to a bag of popcorn and Young Frankstein...Our hands down favorite comedy. So, my little fund of moving out is growing, if I should need it, b/c he has "shat" on me before , but I am ok with him right now.

Can't type much. arm hurts like hell. I see nuero on weds. I think they are going to scrape my cervical vertabrae from inside my spinal canal. owch. I'm a little more than apprehensive and get sick everytime I think aboutit.

I'll talk soon. sorry to be short.

Tracey