I had a bad night last night and my husband made me feel like he'd be better off if I was dead. He has to do so much which I understand, appreciate and thank him for constantly. Thank you for taking the trash out, thank you for getting the laundry out of the dryer, etc. Last night I said "sorry you had to cook again." and he replied "I'm used to it" very sarcastically. I didn't get emotional or mad but I said "is that fair to make me feel worse when I'm already apologizing and feel bad?" He said "I just get tired of doing everything."
So I feel like if I wasn't around he would have to do it all anyway but at least he'd have more money. Don't worry I'm not suicidal or anything I just feel extra useless because there is even less I can do now that I'm seven weeks from delivery. My husband is normally very compassionate and understanding and I do think he was just exhausted.
So anyway I've been feeling sick of hearing myself apologize to the world all the damn time. So I decided today send out an e-mail to all my family and friends about how things are for me and that I'm not apologizing anymore for it. Maybe it will help some of you deal with the people in your life.
My Last Sorry
Hi Family and Friends,
I hope you are all well, happy, safe and enjoying summer. I have 7 weeks to go to baby. We still don't know the sex. I will be having a c-section so you may not hear from me for awhile after delivery. But I am being optimistic about it as everyone I know who's had one recently did great. Everything is generally fine here with a few life problems that you just have to deal with. Andrew is growing into an adorable little boy and is good company for me while I'm housebound all the time. Not the same as adult conversation but at least I'm not alone all the time.
Over the last two years I have spent a large amount of time apologizing for everything I can't do right now and beating myself up for getting sick two years ago and not being the same CAN DO person I always. I'm sorry for not writing more, I'm sorry I can't go places and do things, I'm sorry I can't seem to get better, I'm sorry I disappoint everybody, I'm sorry I'm not able to participate in life more. My life went overnight from being able to do what I want most of the time in spite of having lupus and fibromyalgia, to having a giant list of CANT. I spend most of my time alone or with a toddler which is the same as being alone. I have to stop saying sorry and stop explaining myself to everyone because I can't take the burden of it anymore.
This is the last time I will speak to anyone about my illness unless asked. If I am asked "how I'm doing?" I will tell you that I am having a great day, good day or bad day. If I say bad day that means I'm be ridden. I have been explaining myself to others since is I was a teenager and I'm tired. Lupus and fibromylagia are mysteries to lots of people. Also our American society does nothing to prepare us to deal with death or sickness. As my family and friends what you can do if you wish is take a moment to read this really long letter as it will be the last attempt I make at educating the people who care about me. I am making an effort to educate you about what I deal with every day so I can let it go and stop worrying that people don't understand and just think I'm lazy or don't want to work anymore. People with my conditions are treated terribly by family, friends, doctors, strangers in public and employers because the world is ignorant and doesn't care to learn.
This is my last sorry. If you decide to trash this and not read it that's fine, this is about me getting past this and moving on. So here's the deal.
I have lupus and fibromyalgia. I have had lupus since 17 and fibro since 22. My lupus has been in remission according to the doctors since before Andrew was born. That's why we got pregnant in the first place (both times) because I was in remission and it couldn't hurt the baby. After Andrew, the bad epidural and the two surgeries, my fibro became disabling. I used to just be sore and tired and could deal with it and still work, play, live. I didn't even know before this happened that it could get this bad. Now I know. I get excited when I can do the dishes, or read magazine and understand it or drive to run an errand.
My doctor has declared to Social Security Disability that I can only sit/stand for 2 hours in an eight hour day with a break every 30 minutes to lie down or walk. Also I have to go the bathroom about every 15 minutes because of the butt surgeries. She states that I have 25% and 10% use of my hands and arms during an eight hour day. I can stoop 20% and crouch 5 % in an eight hour day. She also states that I am not a malingerer (which means faker) and my condition is not emotional and that I can't handle any stress. The following is a list of symptoms that I have which are from fibro which two of you have seen because you cared to ask. I got it for the doctor to use in tracking how I'm doing, I deleted all that don't apply and pasted it here. It's long but I can't help that. I hate talking about all this.
Thank you for listening, thank you for caring and thank you for letting me stop apologizing anymore. Now that I have made the effort to educate anyone I care about I can let it go. My typing timer has gone off so I'm done for the day.
Love, Andrea
Here I attached Copper's List of symptoms modified to reflect mine.
You owe no one an explanation as to how you feel or anything else. When someone asks how I am doing I just say okay, if you tell them how you feel they just roll their eyes anyhow, like here we go again. that is why these boards are so great, people here, go through the same things and have compassion.
I never thank my husband for doing anything for me,I use too but he says there is no need to say thanks, it is his house too and his laundry so he feels since he retired he should help. I am grateful for that, we need to have support in our families. I do what I can when I can and forget the rest. My low back is better now I have terrible pain in the ribs in under the boob and up into the shoulder, just wish this would go away and stay away.
Your Bud, Linda
__________________
pa235
Fibromyalgia
Myofascal pain syndrome
Costochondritis
Arthritis, cervical and thorastic
Hello Taurus3
I am sorry to hear that your husband is being like this but if you want to not hear anything from him like that then sweetie don't apologize for being pregnant and having health problems on top of it . Saying your sorry isn't or shouldn't be something you have to say at this point and time in your life, I really do hope that for your sake he was maybe just having a bad night like we all do with orr without fibro.
I hope everything goes well for you with your delivery and your fibro and lupus boy you really have a mixture there to deal with. Here's to it will soon be over you will have a lovely new baby and hopefully a happy husband is will be back to his old self again. Wishing you lots of luck and all the happiness that you deserve as well as a speedy recovery from your soon to me c section.
Hugs Franny
I also get tired of apologizing for things out of my control. My wife works all day and I'm 'house-husband', which works out fine because she'd rather go out with her associates all day and leave the cooking, cleaning, laundry, etc. for me. Now I know how women have felt for years.
I get a government disability pension and some other money, so although there is no money crunch sometimes she has to pick up some of the slack for me--mainly driving me to doctor's appointments and/or the pharmacy. Sometimes she says she's 'sick of it' or won't do it anymore, but usually her mood is pretty good about it. I also apologize, but said to her the other day:
'So again I apologize. You must be sick of that, too'.
All went OK, but now she has a cold and you'd think she was on her deathbed. She's one of those people who never gets sick. She's still wondering why she had to recently put her Mom in a nursing home.
Denial, denial, denial......
I hope your husband goes back to his understanding self. My spouse has bouts of sarcasm, but it doesn't last. I usually rally real quickly.
As much as family can sometimes hurt us, I still try to see their side. We must seem like alien beings to those blessed with good health. I just wish they'd try to see our side sometimes.
As much as family can sometimes hurt us, I still try to see their side. We must seem like alien beings to those blessed with good health. I just wish they'd try to see our side sometimes.
I also think denial has a lot to do with why they don't understand...if you don't acknowledge the problem, you don't have to deal.....what elephant???????
Barb
Good for you!!! I bet you feel so much better now just to not worry about what "to say." I feel better just reading it I think you are a wonderful person, you always support "everyone" here, including me. I understand how you feel about your husbands attitude. You know Andy, my 22 year old daughter can be the same way. She has little to no patience with my condition. (Even though she believes it's all in my head.) I am divorced and didn't come down with fibro until after my divorce. I haven't been in a relationship over the past 2 years mainly because I don't have the energy to "convince" or "educate" someone about this condition. If that don't "feel it", they don't understand it. We have enough to do just taking care of ourselves and on top of that....we wake to a daily "sorry" "not feeling well" "sorry I'm not feeling well" "sorry I'm tired" "sorry for not being able to make it to the family gathering" "yes it was really that bad, how I felt that is and why I couldn't come" "well yes I was able to go to the store the next day, I was feeling a bit better" "no I'm not "cured" now because I went to the store.........well you get it, they got it and you go girl!!!!!!!!!!!!
It is not easy being sick when no one around you can see something that tells them you are sick.I never gave up trying to get well and i did get well after eleven years of suffering just like you.I am seeing others get well after getting the bacteria infections in there teeth and gums cleaned up.Do not bother asking your doctor if your teeth could be makeing you sick because they hate dentist and will never admit it could be happening.Only a dentist that knows what he is doing can help you to find out if your teeth are the cause of your FMS. Terry
Hi Andy,
boy you really hit home with me on the family issue. As of last week my Mother was in town, she is dieing from throat cancer which has turned into lung and lymph node cancer. She says that the doc has not given her an amount of time left yet. I have never seen so many family members jump for the chance to visit with her. They all love her of course and we all see each other once a year, (thats enough for me) but this is getting sort of ridiculous now. I think Mom is enjoying too. The thing is, I don't jump cause I know she will be out of pain forever and that sounds great to me. no, I'm not thinking suicide, not at all, just that I'll be glad for my turn so I can finally be out of pain too.
I guess my not jumping so much is the gossip now in the fam. I did drive 500 miles to visit her and 500 miles back three times this summer. None of them did that but they seem to forget that. I don't argue anymore. My family seems to think that this is all in my head as most of you have heard from someone by now. I have a sister that is a physical therapist too, she says she'll give me a half massage but she has to charge me......I'll pass. I'm trying to avoid people that make me feel inferior when I'm around them and that includes family too. I've explained to them in a similar way that you did but some of them said they never got my email. I sent it again but felt like I was whining. I have one sister and my Father that keep in touch with me but none of the others call or email either. I've lost friends over this too. The good thing is that I don't let it bother me anymore. I'm happy doing what I do and my husband never does a thing. Him getting the laundry out of the dryer would make me faint! LOL! I've asked for a massage just on my feet maybe and the look he had on his face was awful so I don't ask anymore and he doesn't offer. I know it is hard for our spouses to help so much, it is alot of pressure but nothing compared to what we live with daily and nightly. Oh how I wish for a fibro virtual reality thing. You know the things that they put on and they feel and see what we do? In 3D?
You have alot to deal with Andy and you have the right to ask for help and saying thank you is supposed to be a nice thing isn't it? Maybe hubby needs a good nights sleep. You said he is usually so helpful most of the time so he probably just had a long day. I hope he feels better today.
You know what helps me at times like that is that I just keep telling myself that it is temporary and things will pass. Maybe that will help you a bit, only a few more days and a new situation and less weight to carry around. I hope you have a happy healthy baby and very soon too.
Rest up while you can, two will keep you running!!!
Hi Terry,
I'd like to talk to you about the dentist theory some more. [ removed ] I'm having dental trouble and have had since 1993 when I was diagnosed. Hey at this point I'd give just about anything a try anyway.
TIA,
Maryliz
Last edited by moderator2; 07-21-2004 at 08:33 PM.
Reason: Use this board anonymously, only - no emails.
I'm happy to report I'm feeling better in all ways. I still haven't really talked out the issue with my hasband yet but we're at least speaking and civil and happy. I figured out last night part of why it made me so mad and hurt was that he said "do everything." That minimizes any contribution I make and it's just not true. Even at this stage I still do plenty. If I didn't our house would not be spotless and affairs would not be in order. I can't do heavy housework but I pick up after a toddler all day (I use my toes if I can't bend over..lol) and feed us twice. I do the laundry almost always except for the shuffling it around sometimes. And I do watch our son all day and keep him from harm and teach him how to walk, talk, read, write, paint, have good manners, potty.
I'm happy to report that so far the feedback from people I sent the e-mail to has been very positive and surprisingly heartfelt. Also I feel great now that I made a commitment to stop being sorry. I haven't said it once and when I think it I stop myself. I even went to tell someone else I was sorry for their problem but I changed to a different word. Also my friends and family seem to be in shock over just how crappy things have been for me because it's much more impactful in writing. Thank God Almighty I'm Free At Last.
Thank you to all of you for your support and kind words. This board helps me so much. I know I have all your well wishes and you know you have mine. As Barb said I always try to see the other side of things as well. Everybody gets tired sometimes and my husband has a big burden somtimes. But as Linda said it's his laundry, house, mess and stomach too which is the attitude most of the time. As a matter of fact I think thanking him too much may be part of the problem. If I don't make a big deal out of every little thing he does maybe he won't either.
Wishin - a special thank for what you said. It makes me feel good to know that in my own way I can help people. It makes all the bad stuff worth going through.
Terry - I respect your opinion about the teeth and know that in some cases it helps people which is wonderful. As we've all mentioned before fibro has many different causes. I can assure you, again, as I have in the past posts, my teeth have been checked several times, I have no dental issues. But if it helps other people that's great.
Maryliz - I appreciate your kind words and just wanted to say I know this situation with your Mom is a tough one. And I can understand the feeling of wanting your pain to be over. I'm sure we all can. My heart goes out to you with your Mom's illness. There are so many emotions involved when a loved one is dying. It sound slike you're doing a good job of caring for yourself and just leeting yourself feel however you feel.
To Me You are all Angels. I am so blessed to have found this site. I do have a problem that I hope you can help me with somehow, even if it is simply feedback or support that I desperatly need.
A few months ago my Daughter decided to wipe me out of her life. She posted on all my friends sites ViA xanga, Emails on my email list that she had from me having multiple people listed on an email, and told them that I was a malingerer and a hypochondriac that I am not sick and NEVER was. She said I am simply a Drug Addict that uses the guise of being sick to get more drugs. She told them I am schitzophrenic and psychotic and dangerous to be in contact with. She has denied me access to her email her sites and that of my Grandaughters too. I am not allowed to call or write or visit. She says when my Grandson is old enough she will tell him about his Drug Addict, white trash, Psycho Grandmother and leave it like that. All this because I had trouble keeping a scheduled time that she made, to visit her, and have had to cancel due to a flare. From that she had the nerve to have my Grandaughter write me an email using virtually the same things she said and more like "I used to sit at the window waiting for you to come and you never did." Things like that. I wonder why my Daughter never told her why and that anytime I could not make it I would cancel with enough time for her to tell my Grandaughter that I couldn't make it, as if she allowed my Grandaughter to go through that pain to simply make her hate me more.
Then 3 months ago I got a surprise of my life. The Son I had to give up for adoption at birth (I was 17 in the 60's and they didn't allow you to keep your baby out of wedlock then) and I, found each other. I was Estatic! He has 3 Children that adore me. My Son has the same problems I have so his wife and children are familiar with the disease and I am not put down nor cursed at and called names from them. It is as though God knew what was going to happen and sent me my Son back to take some of the pain away from of losing my Daughter and Grandchildren.
Lately I have been having trouble with my Fiance. He believes that since the MD changed my meds that I should be able to go back to doing everything I was doing before I went down with this disease. I have been bedridden for over 2 years now and it will take more than a couple weeks on new meds to get back to even near the level I was at before I went down(if I even can ever get that good). Even with the pain meds I have flares that last anywhere from 1 week to 3-6 months. He cannot understand that.
A couple weeks ago I was feeling good so I went and started doing the house cleaning he has refused to do since I went down like vacuuming, mopping, cleaning the tub and the whole bathroom,(the toilet was literally growing with what looked like moss...only it was red and green.UGH!) and I went down bad the same day and have been down since. I forced myself to go to the grocers with him last week and had to ride the disabled cart and it took all I had to get out of the car and back into bed afterward. He simply refuses to do anything anymore around the house and I still have over 3 years of boxes and stuff filling the living room floor., along with his stuff there too. And my bedroom...I was in the middle of going through 12 bags of clothes(I have stuff in all sizes because I change from week to week due to water gain or something) to give away and see what to keep that were sent from AZ where I lived for 8 years,along with stuff from being here for the past 7 years and they are in a big pile in front of the closet and Is still cannot even lift my arms enough to be able to go through them. You can barely walk through my room, not that it is big to begin with LOL! He has the big Bedroom, and it is piled high with all his junk, clothes computers that are dead and computer parts...and he yells at me for my clothes.
He does not cook, so I very rarely get to eat anymore. He says his mind is like any other mans mind and not set up to learn how to cook because it is a womans job ...Pffft! He says he can live on Peanut and honey sandwiches and does! I am allergic to peanuts. He eats lunch out everyday, but gets mad if I ask him to pick me up some Skippers fish....
I am at my wits end. My Daughter has caused me to lose friends....and even tried to get my SON to tell me to go to hell, but what she did not know was he has the same problems and told her a thing or two.
I am stuck in a house with a man that is ALWAYS in a bad mood. So bad that his energy is caustic, if ya know what I mean. I do not think I have seen him smile more than 8 times since I have known him. He wears a scowl all the time and it makes me want to cry.
I am now going down again and the fevers are starting and I have to stay in bed again. I have not eaten in 5 days. 5 days ago I took an extra pain pill and made a batch of breaded boneless pork chops (25 of them) and couldnt even eat any of them afterward. Had to go right to bed. Was so exhausted and in so much pain. Well, he had them for 5 days and never did he even bother to ask if I wanted one. So I just do not eat. It has gotten to the point that I am not even hungry anymore anyway so I am glad for that.
I do not know how I am going to live like this nor do I know what to say to him to make him realize how hurt I am, and how sick I am. I thought he understood that the pain pills do not necessarilly mean I will be up and running around. (Well I though I would too though and I can't)
All my plants are dying because I cannot get up to water them all. even my outside garden, I cannot get him to water it. And I have to see and know all my years of work getting the garden in and going is dying. I try to give the inide plants my bottled water because I cannot lift the water can anymore and it just keeps them alive. I cant do it as much as they need though,
I am so exhausted from typing now that I have to stop and go to bed, I am dripping sweat and nauseous..Till next time...
"Above All Do No HArm"....Divine Love and Healing Light to You All...kovena/Jessica
Oh Jessica I don't know what to say. I am the daughter of a 60's teen Mom and I know she had to fight very hard to keep me. Everybody wanted me. So I am happy for you that your son came into your life and can understand your illness.
You have such an enormous burden of ignorance leading to cruelty in your life. I don't know where to start. You probably already mentioned this at some point but do you mind if I ask your age. Your fiance sounds like a big lazy bohunk. I'm seriously worried about you not eating and doing stuff to hurt yourself every time you feel a little better. One thing I've learned over my last two housebound years is that the better I take care of myself, the less I hurt and more I can do. I'm not running marathons or anything but I have some quality of life. Malnutrition causes so many of our symptoms or exacerbates them. Even if you have to get cases of Soy Protein Shakes or something it's worth it. I did the shakes for about six months and then after I got a little better I could feed myself better.
I wish I knew a magic answer for you. It sounds like in your case it would be pointless to even try writing a letter to your fiance because I don't think he would get it any better. Are you financially dependant on him?
Oh and I understand the clothes thing. I have sizes from 12 to 20. Sometimes I'll take a new medication or something and gain 20 pounds in one week. It happened right before my wedding. We thought we were gonna need the jaws of life to get me out of my dress once we finally got it zipped. But no worry, someone knocked me over the post reception after party and the zipper broke on the dance floor. So me and my friends formed a conga line with one infront and one behind to hold the dress up.
The thing with your daughter is a tough one. My Mom has fibro and four years ago a psychiatrist started giving her some experimental drugs for schitzo and bipolar and psychosis. The drugs affected her very badly and between the disorientation of fibro and the drugs, she acted wierder and wierder. I actually did have to block her e-mail for awhile and told her we needed to speak rather than write because her writing became nasty, mean and wierd. Then her behavior got really strange. But I didn't give up on her. I found out how many drugs she was taking (prescriptions) and forced her to go to her PCP with a list because I thought the shrink was gonna kill her. She's all better now and we have a great relationship again.
My point is that although your daughter sounds really extreme, sometimes we sound different in writing or on the phone than in person. If she understood your condition better maybe she could bring the kids to see you if you aren't well. They can climb in bed with Grama and watch a movie. But I'm not sure how to get her there if she's decided that you are just an addict.
I wish I could be more help. I feel so badly for you. Hang in there and try to focus on your son and his family.
Thank You for the Heartfelt response. I have not done anything or written any weird posts to my Daughter, and never needed to see a Psychiatrist. I have been on pain meds now for at least 9 years starting at Codiene and working my way up to the morphine now. My Daughter is a hateful person and one of the biggest reasons she hates me is because when I had cancer in the early 70s I had to ask her Father to take care of her and he would not do it unless I gave him custody of her. Then it took me nearly 10 years to finally get her back and by then she was a teenager. She claims he abused her, and told her it was all because of me and that I did not want her anymore because she was no good. Oh, I am 52 at this time. I had cancer when I was 25 and 26, Uterine, cervical and bladder. I never really got better. I did get rid of the cancer but the chemo seemed to make me so sick I never recuperated from it so I have been sick for many years. My Daughters Father told her I was making it all up about Cancer and being sick, that I was a hypochondriac and sick in the head, and a Drug addict and she believed him.
Yes I am dependant on Ross. I was never able to keep a job for any period of time due to being sick all the time and in the 70s and 80s there was no such thing as fibro so the Mds never could put a name to what I had. I recieve 550 dollars a month for SSDI because of my work history and that would not even pay for a place to live, let alone all the other needs like elec and things.
My Daughter is very vindictive and has told me she is ashamed of me and would not from the very beginning allow me to even meet her friends or Husband or husbands folks. I was not allowed to her Wedding. She calls me white trash and because her friends and her husbands families are all rich I do not fit into her category of people she associates with.(She actually said that!!)
I have done my best in this world and can do no more. I recently lost my singing opportunity due to the MDs at the hospital, I loved to sing and even made a Casette and was going to further that career until the Hosp trip.(I sang Blues and really was very good, really.) I went there with a migraine and the MD said I had to have blood drawn and they wanted to put an IV in before they would help me and because of chemo in the 70s my veins are all sclerosed and no veins to be found so he decided to put in a central line. (If my regular MD was available I would have gotten a shot and sent home and migraine would be gone) So they tried to get the line in the left side of my neck and I felt a POP and blood came rushing out my mouth and nose, they quickly tried the other side and same thing...then they tried to intubate me while I was totally awake...everytime they put the tube in my throat it blocked what little air I could get and I freaked, my lungs filled with blood and my heart stopped. The next thing I remember I woke up on life support and it was 3 days later. They did not know if I would wake up. I had been in a coma. Them trying to force the intubation tube down my throat ruined my vocal chords. During all this, Ross called my Daughter because they did not know if I would live and he wanted her to come see me for maybe the last time..her remark to him was "whatever" and she hung up. She never came. Haven't heard from her since. But I never did anything to make her think I was psychotic. She uses that to tell her friends for lack of anything else to use, as to why I am never around or why she never talks about me. She uses abuse and addction to get sympathy from all her "People".
Ross is the way I told you in last post, in a way I blame myself. I cannot go to bed with him for more than my medical reasons. He realy disgusts me at times. He never bathes and his teeth are always filled with food and junk. I counted 3 1/2 weeks one time before I told him to go brush them. His skin is oily but dry flakes all over it and in his mustach and beard. I used to wash his clothes with mine but got so disgusted by the poop in his underwear I stopped. He changes them maybe every 2-3 weeks. I bought him 8 pairs this Christmas and he has used 3 pairs of them so far.I threw all his old yellow and brown stained ones away. Even though he is the spitting image of Abraham Lincon, with Severe Acne scars, he would still be handsome if he would bathe or wash his greasy hair sometimes. When he does bathe he will not shower and all the dead skin cells are stuck in his beard and hair as soon as he comes out of the bathroom. I have asked him to PLEASE Shower and told him why but he says he likes a bath and thats that. It just makes me shudder the thought of being intimate with him, add that to his attitude and scowl all the time, and his hateful energy and it makes it impossible for me to ever be intimate with him. He used to steal my meds when I was on oxycodone, and even when I was on the Fentanyl Patch I would find some missing. I have tried to hide them but somehow he finds them. But now that I am so bedridden I am always in my bedroom where the meds are and he does not get a chance. Although he is the one who picks them up from the pharmacy for me I only found one MSIR missing since I started on the Morphine sulphate and MSIR. I take that back...can't believe I forgot LOL! I found a morphine sulphate 60mgs missing too last week. I can't say anything about any of it because he gets very hateful and swears I had to have taken them and not known. So I have no recourse for that.
I pay 350 in rent every month and some for elec usually 35 water 35 and telephone bills that I make.(I call my Son in PA and my Mom in NY) It leaves me all together with about 125 to live on for cat food and necessary things. He eats off my food stamps(he has a card to get my food because I am bedriden, but I don't eat so he buys his food) and still we get shut off notices for the elec and tele and water too. He makes 2400 a month at work but the morgage is 890 and his new truck is 499 a month so I sometimes wonder where the rest of the money goes. Maybe he goes to a place to pay for sex. I don't care as long as the bills get paid and I do not have to get close to him. I BEG him to do repairs on the house and he will not. It is falling apart. The grass does not get cut till it is 2 feet high. When I was doing halfway better a few years ago I dug the place out front and made a Beautiful garden which he refuses to water and it makes me cry to see it all die like it is. We had 24 Rhodendrum bushes, only 4 are still alive due to no water. I honestly do not have not only the energy, but cannot hold or lift anything over a pound so I cannot even pull the hose out there to do it. I cannot stand up for more than 2 minutes without my back cramping up and causing me to go down. I am at a loss for what to do.
I do not know if I answered all your questions or not, but I cannot see your post now so I will end here and if there is more you asked me I will follow up with a quick reply. This house is so filthy now because I cannot clean it.I did what I could but could not ,move firniture to vacuum. The vacuum he owns is so heavy and old you have to go back and forth on the same spot at least 10 times to get any dirt up. So I cannot do that again. I go so sick from trying to clean the last time I am not willing to do it again.
I have tried with discretion to tell Ross about his skin flaking and teeth dirty and other stuff but he is oblivious to what I say. Would you ever get into a bed with someone if there were poop streaks all over it? Thats how his sheets are and I have bought him new ones but he uses the old ones for months at a time. the last time he cleaned them was before last Christmas. I will not let him use my pillow cases because all his are dark grey from oil from his hair and they smell so bad. Enough, I am feeling so guilty talking about this but I had to let it out and I thank you all for putting up with my griping. I am sorry for taking up so much space complainig.
"Above All Do No Harm"....kovena
Jessica, your story brought tears to my eyes, I feel so bad for you, here I am complaining about pain and you have pain and all this hardship in your life. Made me think of the saying that I cried because I had no shoes until I saw the man who had no feet.
Please take care of yourself, you are a strong person, I can tell that by reading your post. You CAN make it on your own. When you are able to be up and around, keep moving as much as possible, you know our muscles can go in to atrophy, but rest on the very bad days. make sure you eat, it is important to your well being.
I am so happy that your son and dil are in your life and the grandchildren. Your daUghter has to learn to grow up, she does not know what the future holds for her.
Wishing you the very best, Linda
LOOK TOWARD THE SUN AND THE SHADOWS WILL ALKWAYS FALL BEHIND YOU!
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pa235
Fibromyalgia
Myofascal pain syndrome
Costochondritis
Arthritis, cervical and thorastic
Don't feel guilty for talking about what you've aobviously been carrying around for along time. I am so saddenned about your daughter. I have a friend whose youngest daughter went to live with her father after he manipulated and lied to her. So she now believes her Mom is a horrible person.
I guess the only thing you can do is let her go. I know it's hard with the grand kids. But they will be old enough to make up their own mind eventually. So they might come back to you. I know $550 seems like not enough to survive on but if big dirty greasy stinky bohunkwasn't around you might qualify for more benefits. I don't know what state you live in and they all have different rules. But between hud housing, food stamps, medicare, in-home house keepers you just might be able to go it alone. OR if your relationship with your new family develops they could get a monthly stipend for helping to take care of you if you roomed with them.
I know it's all a lot to engineer but gosh what you're living with sounds horrible. My Mom gets about thatmuch per month and because she is on food stamps as well and HUD housing she has a person who comes in 4 hours one day a week to do the shopping and heavy cleaning. At times she has had someone three times per week when she needed morehelp bathing, etc. She is only 49, will be 50 on my new baby's birthday. The in-home help is all paid for by the state program that runs it. Oh and many areas have free taxi rides, etc. for people who can't drive for whatever reason.
You are a young woman still and could have a better life. Just some things to think about. I know when my mountain of crap is facing me at times it has been hard to see any solutions without input from others. So please don't think I'm being pushy. If you feel safer staying with stinky smelly man I understand.
I always thank him for doing things for me, like remembering to get stuff from the store...because a lot of the time he does not remember...or forgets the most important thing, or gets a totally different thing...sheesh..I feel so bad having spoken about him like that but how much can I hold inside. I have never told anyone else and because we are anonymous on here I feel safe to let it out. Why would a person do that to himself? Even on my worse days I get into the bathroom and do a washrag bath. I couldn't stand myself with that kind of stink on me. Have you ever seen that commercial for clorox bleach where than guy goes to jump into his bed and stops in mid air when the commentator says "how do you know your bed is really clean" and it shows all this roiling gunk on the bed....I laughed my heart out when I first saw that...thats how mr stinkys sheets must be LMAO. It was really good for a heck of a laugh! He looked at me when it was on and was wondering why I was laughing so hard that I had tears in my eyes. I told him it just hit me funny!
I was wondering if I could feel some things out with you..about my meds. I started on 60mgs MS CONTIN on the 8th of this month. I also had the MSIR to take for breakthrough. He did not give me enough MSIR to last until my next appt, in fact he gave me 30 of them. I am in such bad pain again without them. Should I ask him to up the dosage of the MS Contin or for more MSIR. When I was on the patch 75 mch of fentanyl he would only allow me 30 oxycodone.(one dose a day for breakthrough) I think he is thinking that all I SHOULD have is one breakthrough a day and will not give me more than enough for 1 dose a day. How do I convince him I need more than that and that the MS Contin stops working in 4 hours. It does not last 6! I am terrorfied that he will not give me enough to get through the next month either. My MD is the type that you cannot talk to unless you have an appt and I see him on the 29th.(His nurses are so useless, its as if they are the MDs and they try to tell me what I need and what I dont...does anyone else find this?) I am in agony right now because the MScontin does not last on its own and certainally not for 6 hours. I need advice on how to talk to this Doctor. I am so afraid to lose what I am given but if it does not work enough to allow me to even get out of bed what good is it? Is 75 mch of fentanyl comprable to 60 mgs MS contin? Are there larger doses I can take? Or better yet a larger dose of the MSIR so if he only give me enough for 1 a day I can at least cut it in half and have enough for 2 a day. I could just cry for the fact that I get so close to finding something for relief and then I can't get the MD to give me enough of what I need to work. It makes me want to scream...so close and yet so far.... Does anyone know what dosages the stuff comes in? Thank you in advance for any help you can give me.
"Above all Do no Harm" Love and Healing Light to All.....kovena
I'm very new to the meds side of fibro. Only took anti-deps at different intervals for the first ten years I had it. I just started getting codeine and soma about a year ago.
So I really don't know that much about the patches and stuff. I'm sure someone else does though.
As for how to talk to the doctor, it's so frustrating. Do you find that you have an easier time expressing yourself in writing rather than speaking? Maybe if you write a short note just like you did above stating why you feel you need more and hand it to him at your appointment that might help. I get nervous when I have to ask doctors for anything and I trip over my tongue. Explain to him that with the brain fog and pain you have hard time getting your point across so would he please read it and respond.
Nurses can be very pushy sometimes, heck even office staff have tried to diagnose or medicate me. I've finally gotten to the point where if I have to call in for some reason, I flat out tell them the reason for my call is none of their damn business since they aren't my doctor.
Good luck on the 29th and I wish I could be more help.
One more thing..I did have one bad reaction to my letter but it was expected from the person it came from. She took it very personally. Of course she is one of the people who lives ten minutes away from me but can't bother to come see me since I can't drive. So I think her own guilt made her take it personally.
But everyone else has responded very kindly and with great support and encouragement. And I haven't apologized for one damn thing this week.
WTG! You NEVER have to apologize! But I find myself doing just that at times too so it's easier to said than done LOL! Today I said to Ross, "Why do you make it seem like you always expect an apology from me for being sick??" He had no answer to that so maybe he thought about it.!
Good Night and Love to All...kovena
I think you are a wonderful person, you always support "everyone" here, including me. I understand how you feel about your husbands attitude. You know Andy, my 22 year old daughter can be the same way. She has little to no patience with my condition. (Even though she believes it's all in my head.) I am divorced and didn't come down with fibro until after my divorce. I haven't been in a relationship over the past 2 years mainly because I don't have the energy to "convince" or "educate" someone about this condition. If that don't "feel it", they don't understand it. We have enough to do just taking care of ourselves and on top of that....we wake to a daily "sorry" "not feeling well" "sorry I'm not feeling well" "sorry I'm tired" "sorry for not being able to make it to the family gathering" "yes it was really that bad, how I felt that is and why I couldn't come" "well yes I was able to go to the store the next day, I was feeling a bit better" "no I'm not "cured" now because I went to the store.........well you get it, they got it and you go girl!!!!!!!!!!!!
Re: My Last Sorry or The List 
Re: My Last Sorry or The List 
Re: My Last Sorry or The List 
