My first suggestion to you would be to go back to your rheumatologist to discuss medication options. It sounds to me as if your RA is not well controlled and you may need to increase your dose, try combinations therapy with another DMARD or prednisone or another medication altogether.  When you're RA is flaring, all bets are off, you get depressed, it starts affecting your relationships, your self-confidence and it's a ticket to misery.  Getting your RA under control will not just protect your joints from permanent damage that will affect your ability later on, but will also protect your self-esteem and your marriage.

As you mentioned, you can't ignore the fact that RA does require you to change how you do things in your marriage. It requires a shift and  adjustment to that shift - like you said, your husband may go out and do active, physical things with friends and the two of you can find more sedentary, quieter things to do together when you can't go out.  The trick is to find things that you enjoy doing together - whether those things are physical or not doesn't really matter. 

Have you considered counseling?  I've gone into counseling several times over my career with RA and found that a therapist who specializes in cognitive therapy was more helpful than the others - cognitive therapy can help you change the way you think about your disease and give you coping mechanisms that you can use for the rest of your life. Couples' counseling may also be a good idea - it will give you a place to talk about your issues with a supportive mediator and help the two of you find ways to cope now before there are problems, which would make it more likely that the two of you can deal effectively with any future problems with out it causing intolerable strain on your marriage.  I wrote a post about relationships last year and them a vehicle of things in that you can use.

Part of you coping well with this is learning to relax and to trust that your husband loves you just the way you are.  It can be really difficult to be the sick partner - it can do a number on your head, on bad days persuading you that you bring nothing to the relationship. Which you know isn't true - your husband doesn't love you because you  play golf, right? But knowing it intellectually is very different from knowing it in your heart. It doesn't help that the rest of the world can sometimes look at the two of you and proclaim your husband a saint for being with the "poor sick woman", imposing their idea of you as bringing nothing to the relationship now that you're sick. Get mad about it or start laughing about it - it helps keep you from buying into that stereotype.  And this is where couples counseling may be a good idea again, as it would help you and your husband talk about what makes your marriage strong, why you are married in the first place, why you love each other -  I bet none of that has anything to do with golf - and hearing it out loud may not only help cement your marriage, making it stronger, but would also help you believe that you are much more than your illness.

Good luck!

Kim

7/23/09 10:48am

Thank you for the support and advice, Lene.  I did start a dose of prednisone that is kicking in after 5 days.  My rheumatologist thinks it is pretty well-controlled, I think because I manage to drag my butt to work and get out in the garden once a week or so.  He tells me to keep gardening, taking Vitamin D, and gave me some Voltaren creme for my knees and ankles.  "See ya in 6 months"

I admit that I have wanted him to say I'm ok on just the plaquenil because then I don't have to try methotrexate.  I am unsure of what is "normal" when your RA is controlled.  Do you still hurt every day, even while cooking, typing, etc.?  I had xrays of my hands last October.  Do you know how often that should be done to check for erosion?

I'll check out the post on relationships.  Yes, loving me because I play golf sounds silly!  Sometimes we need to hear it from someone else, even when it obvious.  I am going to call for a counseling appt. today; I've put it off long enough.

Lene Andersen, Health Guide

7/23/09 12:45pm

In my not-so-humble opinion, "pretty well-controlled" isn't good enough. If you still have active RA, you need more bang for your buck - if your RA is not suppressed, you still risk damage to joints and the goal is to prevent that. For a long time, I had "pretty well-controlled" RA, then a massive flare and then I started to Biologics and began to realize what well-controlled RA really is. I still have pain - my joints are very damaged, so that causes pain and I have fibromyalgia and am a little uncertain what is fibro pain and what is RA damage pain, but I do know that I have hardly any squishy swollen bits anymore. So I guess the answer is that yes, you will still have pain and you will still need to learn how to manage that pain, not only with anti-inflammatories or other kinds of pain medication, but also by working within your limits, getting rest when you need to, exercising (e.g. yoga or tai chi), etc. Effective pain management includes all of these and more that you'll figure out yourself and it can feel like a full-time job at times. However, once you get into a rhythm of what works for you and know what it feels like when your body tell you to stop right now or pay the consequences, it will become second nature

 

One of the most important things about managing RA is managing your energy. I forget if I mentioned this before, but you may want to check out my post on working with RA. You may be able to get accommodations at work so you can do your job in a different way and this will help you conserve energy and be less hard on your body.

 

Good luck! Please let me know how things go?

 

Lene Andersen, Health Guide

7/23/09 12:45pm

sorry - forgot that link to the post about working.  it's here.

Kim

8/ 5/09 12:55pm

Thank you for your not-so-humble opinion, Lene! 

I have the hardest time finding what people refer to as "balance" because the pain and energy-levels are so variable.  I just finished a few projects at home and had my daughter's engagment party (hence, the prednisone).  My husband wants to go to the beach this weekend and honestly I'd like to stay in on the couch and just watch movies and nap.

I re-read the post about working every couple of weeks to remind myself that there are strategies that I am not utilizing yet.  I am afraid to tell my employer.  When I was restricted to part-time so I could do physical therapy for right-sided radiculopathy last year my boss told me that my position is 40-hours and that I would need to figure out how to get it done.  When I asked for help last November she said that I should think about whether I could handle the job (I've done this job for 8 yrs.).  She is very bright and has books about not getting sued by your employees on her bookshelf.  I'm sure what she was saying is "the ADA states that we must provide reasonable accomodation to employees who can still perform essential job tasks".  They don't seem to care if I call in and take personal time, so I have been doing this once every couple of weeks and then working at home for a few hours that day.

I'll keep you posted (no pun intended)!

Lene Andersen, Health Guide

8/16/09 7:23pm

sorry for the delay - I've been unable to achieve that balance thing and have subsequently had stay away from the computer.

 

I would recommend you call the Job Accommodation Network and tell them your story. Likely you should contact the ADA, as well. What your employer is doing is, as far as I can tell, illegal, but of course, it's one thing to say that and quite another to get her to abide by legislation.  She's already managed to intimidate you (and other employees) and that's half the battle.  Be careful, but start talking to people who might be able to help you.