My hubby and I are trying to talk about limits and capabilities. As you know, they change! 
I don't wanna be a complainer! How do I communicate the frequent changes, (we have 2 toddlers, so we must work together) without giving constant pain-o-meter updates?
I'm thinking of giving it a positive twist such as:
Instead of, "I can't do the dishes tonight, I'm hurting too much"
Maybe I'll say, "Honey, I can pull the stool up to the sink, rinse the dishes while you put them in the dishwasher."
But, my poor husband! He'd probably be like, "Why would you want to sit on a stool to do the dishes?"
Then we'd be back to the point where I'd have to say, "Because I feel like a 80 year old women who was beat down by a gang of thugs at the grocery store today!!!!" 
Ooops- that'd probably be a negative way of putting it, wouldn't it?! 
Wouldn't you just love to be one of those trooper women they talk about? "Bless her heart! She had RA for 30 years and no one ever heard her utter a complaining word."
How do you get help if you don't pipe up?
Well, being the smart-a** that I am, when my husband asks and I answer "perfect," he knows I am anything BUT "perfect!"
Sometimes, when I'm headed back to the bed, I tell him "I'll be at the spa for a while." And if something needs doing and I can't, I say "Hey hun, I'm gonna let you sweep the door step." And at the end of a day when the most I accomplished was to soak in the tub because I could barely move, I'll say "Boy, that was a great bath. Took me all day to get it ready!" Silly things, but yeah...I think the positive spin in of great value, especially with something chronic like RA.
Oh...and I just remembered. I read a pain scale online somewhere, not your usual "1 to 10, with one being the best and 10 being the worst;" I don't remember exactly, but what I took away from it was that a higher pain rating corresponded to how much the pain distracted you. So I started saying "a little distracted" or "I need a distraction."
ANYTHING to keep from moaning and groaning!!
Tessa,
I've been enjoying your comments and everyones actually. Really helps. Keeps me from asking too many questions since most of you all have similar situations etc.
Thank you again.
My problem that really scares me to the point of panic, is what happens when you are in a flare and it's so bad that you can't move? What if you don't have anyone to help you? I have a husband who I believe is partially NPD which is Narcisistic Personality Disorder. This isn't a good thing with a wife that has RA among other problems. NPD people want all the attention and have a very hard time showing affection, giving support etc. unless it will bring a gain their way. Everything has to be for them. So far, I ask for very little help from my spouse, but rely on my 15 year old son. He won't be with me forever (unfortunately)
When I ask my hubby to do something for me, it's almost like he absolutely hates that I asked him to do something. I don't know, I'm very scared of what my future holds. 
I don't know if you're a Christian or not, but, "I"ve never seen the righteous forsaken nor his seed begging bread." Psm 37:25
God always makes a way, I've seen it time and time again. Even non-believers graciously, unknowingly often receive miracles when they are in need.
I think in this situation, it's particularly important to stay positive and leave a happy feeling to all those who visit you. You don't want to drive help away. When your hubby helps you, lay the compliments on thick. Stroking his ego will make helping you a rewarding experience for him.
Also, you never know what kind of girl your son will bring home. He seems to be compassionate, I'm sure he'll attract a compassionate woman. Your son and future daughter-in-law may be your lifeline. They would probably be much kinder caregivers than your husband, too. And they will have the youth to help you.
Another option is volunteering at a local shelter or church during the good times. Other volunteers are naturally caring people. When you get down, you will have a support system from outside of the home.
Another possiblity is that you may get better, not worse. Getting better will also allow you to form more profitable relationships for your future. No one wants to live alone with someone who is stuck on himself.
Try to look on the bright side of the future. Negativity will only bring you down. I'm not trying to say I'm immune to negative thoughts or moments, I'm just trying to help you think positive. I'll need you to remind me to look up on some days, too!
Laura,
I think it is awful that you have no support from your hubby, also that you depend on your 15 year old son, not fair to him ( I know I have one the same age). Your hubby needs to be shown what exactly it is like when you are bad. Bring him to the Rheumy the next time your go. Ask your Dr. in advance to tell him what it is like. Maybe if he hears it from a professional he might be more supportive.
If things don't improve. You would seriously have to consider if this man is actually damaging your health. The stress of living with someone like that can't be good for you or your son or your condition. I hope he wakes up and starts to understand that this disease can make your relationship stronger.
Hope things work out for you.
Oh girl. Unfortunatley, I am able to related to being married to an NPD, as my first husband probably coined the phrase in the first place! I've been remarried about 3.5 years, but I was with my first husband for over 15.
I experienced about 12 years ago what I know consider my first RA flare, but at the time we couldn't figure out what the heck was going on. The response from him compared to the response from my current Mr. Wonderful are amazing in their differences. And the effect is has on me and my physical and mental health are stunning.
Somehow or other, those dang NPDers have a way of resisting change (in themselves) and making us feel guilty for destroying their perfect little place in the world. If they know how bad we feel, we stir up their anger. If we don't let them know, they proceed as if nothing is really wrong. So, because we are sick, we prefer no anger/resentment. It's just too hard to be firm, it's way too difficult to use this as a learning experience for them, and we just give up and suffer and try to make things as normal as possible for them.
Well...excuse me, but WTH??? WE are SICK...they should be trying to help US feel better, not us protect their perfect little world!! The thing that got me...and I have a Master's in Psychology---which I say only to bring the point home that their 'game' works, no matter what you know!!---is how crazy he made me feel!! I doubted my illness, I thought 'maybe it's in my head' and I pushed on and made myself sicker! But he felt better, so it was all good in his world.
My (unsolicited!) advise is to get in YOUR head, make sure you are confident, you are confident in yourself, your doctor. Then play hardball. "I'm sorry, I just can't do that." And believe it. And follow through. Take your kid out of the picture and in doing so, demand husband step up to the plate. That sounds scary, I'm sure, because I feel very vulnerable too, even with Mr. Wonderful and my supportive grown kids. But even they have had to learn my limitations and my needs.
Unfortunatley, doing this may put your NPDer in a spin-out. Stay calm, stay resolute. And do what YOU can to take care of yourself.
Write anytime if you want!
tess
Rissa, Thank you and yes I am a Christian and am very involved in my church, Ladies Group, etc. Please don't think I'm a pessimistic, or negative person. I'm really not, I think I'm just having a pity party with myself. I don't complain to anyone other than my mom who also suffers with OsteoArthritis and this site. I've been very blessed in finding RACentral. I don't complain to my husband or son at all. My son is just very close to me and also very sensitive to my feelings. He notices if I am walking slowly or holding my hands of even if I'm just down. He's very in tune to me. I wish my hubby were even half as in tune as he is. I also rely on my prayer, (however I have never added myself to a prayer list at my church) and my Christ, but I also remember the story of Job.
Thank you and I promise to get off my pity pot.
Laura
Thank you Mary, I definately plan to have him attend my next appt. So far, my mom always goes, but I'm hoping that he will go. I've asked him to go to this site and read some of the info. I've even printed off some info, but I don't think he reads them.
Thanks again for your comments.
Have a great day!
Oh, don't feel bad about having to vent a bit. I think we all do at times! We are women and we love to communicate. We feel a need to voice what we feel. You're not bothering me one bit. Actually, I doesn't bug me when someone complains- especially when- as in your case- it's a legitimate complaint. I was just encouraging you not to get stuck there. Mr Depression will be happy to move in with you- and he's hard to get moved out! But, it sounds like you're not stuck there.
Good for you, girl! You're blessed with a great son and friends at church. I'm sure God will provide everything you need!
I'm sure you'll read entries in here where I want to whine a bit. I really really want to be strong, but sometimes I also am a little girl inside and I WANT MY MOMMY! WAAHHH
!!!
It reminds me of my homebirth- which was one of the most beautiful experiences of my life. I had a bit of a breakdown moment where I wanted my doctor and an epidural. After I cried it out, and my hubby stood firm, (He knew I didn't really want that!) I pushed on (literally!) to have my beautiful baby girl. And really, it wasn't hard at all! I had a very quick, easy birth with her. I just needed a whiney breakdown moment.
I really don't want to be whiney, but maybe I need to be whiney sometimes?
Laura,
I feel for you, I really really do, I am going through a divorce right now because my husband is the same way, and you are the FIRST person who has given a name and face to his, what I used to call, jerkiness. I even got him a shirt one day that had a huge chined guy with a twinkling smile, and the caption said "WORLD'S #1 @$$HOLE" without the signs of course...
But yeah I would be in tears trying to get clothes cleaned for us and our two kids (agrs 3 and 4) and when the house wasn't perfect and dinner done, like how it was BEFORE the pain, he would look at me disgusted and be like "what did you DO all day?!?" jerk!
I would look up things to print off the net that would explain what it is like to have it to your "loved ones" and... nothing.... it had nothing to do with him. Then he would ghet a tooth ache or something and cry and whine and say I am there for yu when YOU'RE hurting and you do NOTHING for me.... so I know what it is like to be utterly alone and have no help. do remember sitting there on the couch once, (when I get a bad flare up, I DO panic, I get BAD panick attacks and freeze up, and if i do not get carried out into a car and brought to the ER I just have to sit like that. There is nothing I can do about it. SO like I said I feel for you, it is worse to be alone and yet have someone around you all the time, than to be actually completely alone, so I made it that way ;-) I just cannot wait until i can get to the mind frame of tessie...
Laura,
I feel for you, I really really do, I am going through a divorce right now because my husband is the same way, and you are the FIRST person who has given a name and face to his, what I used to call, jerkiness. I even got him a shirt one day that had a huge chined guy with a twinkling smile, and the caption said "WORLD'S #1 @$$HOLE" without the signs of course...
But yeah I would be in tears trying to get clothes cleaned for us and our two kids (agrs 3 and 4) and when the house wasn't perfect and dinner done, like how it was BEFORE the pain, he would look at me disgusted and be like "what did you DO all day?!?" jerk!
I would look up things to print off the net that would explain what it is like to have it to your "loved ones" and... nothing.... it had nothing to do with him. Then he would ghet a tooth ache or something and cry and whine and say I am there for yu when YOU'RE hurting and you do NOTHING for me.... so I know what it is like to be utterly alone and have no help. do remember sitting there on the couch once, (when I get a bad flare up, I DO panic, I get BAD panick attacks and freeze up, and if i do not get carried out into a car and brought to the ER I just have to sit like that. There is nothing I can do about it. SO like I said I feel for you, it is worse to be alone and yet have someone around you all the time, than to be actually completely alone, so I made it that way ;-) I just cannot wait until i can get to the mind frame of tessie...
The Probaway Pain Scale helps describe how the pain affects your ability to complete daily tasks.
Tessa
I am a newly wed (2 years) and in the same boat with the husband with the it's all about me personality. He owns his own company and makes excuses for everything... He is too tired, he does not have enough time, too busy, back hurts ect.... He seems so complacent all the time. I feel helpless when I have to take care of all of the housekeeping duties after work... I feel completely helpless and some times mistreated since he does not respond or sympathize with me.... he doesn't understand the nature of almost constant soreness pain or discomfort of some magnatude everyday pain...and then there are the flare ups
He makes me feel like my only choice is to shut up about it and deal and there is nothing anyone can do for me... If he would just understand how far a little thoughtfulness or compassion would go... when you said you feel like a 80 yr. old I realized that you understand me to a tee... I am 25 not 80. I too am scared about what this may mean for my future. I am terrified of having kids one day because then I will be alone and have to take care of them on top of my day to day struggles and difficulties. For the record I would luv the opportunity to chat with someone who understands. I would enjoy the chance to chat with someone who has RA I have yet to do so with or to anyone... thank you for your post