Hi momto3! I can read your frustration with this whole RA thing, especially with kids. I have young kids,too, but my kids are only 4 (I have twin girls). They don't recognize limitations, but they don't have very high expectations to begin with because of their age. That being said, in the past they have gotten very distressed when I'm flaring and not doing terribly much. I've simply found other things to do with them, e.g., reading, watching movies. When I'm feeling good, I try to do all the things I can't do with them when I'm bad. Sometimes I do wonder, though, that if this AI thing continues, and I progress, what will it be like when my girls are older? One thing that distresses me is that, on occasion, my girls will mimic me! Meaning, they will limp and complain that their hips hurt. One time, we ended up taking one to the pediatrician because she limped for a week?! There was nothing wrong with her hip, or leg, or knee, etc...I try to keep this in mind when I'm hurting and I monitor the way I walk and behave in front of them. It's a fine line,though. I don't want to mislead them; if I feel bad and physically can't do something, I'm not going to lie to them just to save face. This is what my mother did my whole life, and it didn't do me or my siblings any favors.
My husband also hates whatever is going on with me, but he is always supportive. I feel very blessed to have such a supportive husband. His best friend's wife is struggling with a lupus dx, and he (husband's best friend) refuses to acknowledge that anything is wrong with his wife. He calls her a hypochondriac because her bloodwork doesn't support a lupus dx. I see this, and I thank God that I'm not in a situation like that! Neveretheless, my limitations do affect my relationship with my spouse and we have discussed this at times. I think just talking about it helps tremendously; it lets my husband know that I don't feel my limitations are permanent, and I just need him to be supportive when the limitations arise. My RA/UCTD has taught me to be vulnerable and to depend on my husband more than I've ever depended on anyone other than my mother; this is a very important lesson, as I was raised to be very independent. But this doesn't mean that there aren't times my husband doesn't need to depend on me as well. My disease has made our relationship stronger in ways that nothing else could.
With respect to wrapping gifts? I hear you, but wrapping gifts has never been a particular talent of mine (no patience and I couldn't cut a straight line if my life depended on it) so I don't sweat it. My wrapped gifts always look like a 6-year-old did it--but I wrap better than my husband, so there. If my hands won't cooperate, gift bags are a wonderful invention.
Actually, your example of gift wrapping reminds me of a wonderful show of love and affection one family showed to the mother. The mother was undergoing chemotherapy for cancer and lost her hair. She had 4-year-old twins, one boy and one girl. When she lost her hair, her daughter was ok with it, but her son became very scared of her and wouldn't go to her anymore. Of course, this broke the mother's heart. One day, the father decided to do something about it--he, as well as both kids, went to a barber shop and shaved their heads. then went out and bought funny hats for everyone. The kids loved it, and the young boy was no longer scared of his mother.
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan