Sitting on the side lines

Thank you for reminding me that silliness is a big part of what keeps a relationship going!  Your post helps me see that my need to plan everything out (yeah, it's all about control) is stressful in the face of RA.  It sounds like a lot more fun to go with the moment and enjoy the time we have together when I'm feeling perky.  Letting go of the planning though is going to take some practice :)

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.

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?

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)!

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.

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

Thank you for letting me know that I'm not alone in my fears.  Hopefully you can try some of these tips to keep your marriage "interesting", too :)

I agree with the others that your RA is probably not entirely under control if you're still experiencing that much pain and energy loss. If you have put off trying the standard DMards like Methotrexate or biologicals, that may be why. 

Of course everyone reacts to the drugs differerently, but in my opionion it is completely reasonable to expect that proper RA management is having no pain or morning stiffness whatsover.  I've been taking 20 mg of Methotrexate for a year now, adjusted my diet to include healthier foods/ juices and within the first few months I was able to achieve this.

My energy is not always 100%, (and I may be on the younger end of the RA spectrum at 31), but I went from aggressive and debilitating pain and stiffness to now being able to do things with my partner again, go snowboarding, nights out dancing and am even back at the gym.  The more you keep active, the more energy you'll maintain- which is greatly helped by knowing that the disease is completely under control to the extent that you can enjoy life without concern of further damage to your joints. 

Your timing is perfect.  I have a 6-mo check in with my rheumatologist on the 18th.  I am goinginto the busy season at work (residency interviews for med students) and have to work overtime, so my off time has been spent recuperating.  I get the sense that $ is driving my treatment (have private insurance).  The risk of not feeling well with methotrexate seems worth being able to have a life!  I'm glad that you are feeling up to snowboarding and dancing; wow, that gives me hope.

Thanks, again.