My name is Tina. I was diagnosed with Lupus, Fibromyalgia, have 3 herniated disks in my back and neck, and have osteoarthritis. Surprised when I went to the doctor a couple of months ago, and she said i have mixed connective tissue disease, which is a combo of lupus, myositis, RA, and scleroderma. I am already taking a large amount of meds, and now we have added methotrexate (10mg once a week), followed the next day by taking two Leucovor. The metho makes me feel really bad for a couple of days after taking it, even with the Leucovor. Seems like the pain will never go away. Fought for SS Disability for almost four years, and finally it came thru. I live with my boyfriend of 8 years, he's not very understanding about all of this. When he is in an 'amorous' mood and I'm not, he gets really upset and stays mad for a couple of days, which doesn't help my stress level, or my feelings for that matter. He just doesn't get it. I always prided myself on having a really clean house, now it's all I can do to get a few things done a week. It's all very depressing and I feel like I'm on eggshells around the BF. I'm glad to have found this site, as I said, I'm new to RA, and have seen what wonderful support people are to each other. It's like having a safe haven to say how you really feel.
Hi Tina =)
I totally understand about being frusterated with keeping up with housework. I've been a stay at home mom for 11 years now, since my oldest child was born, so keeping a clean house has always been what I prided myself on. It was my "job." 11 years and 4 kids later, I feel like RA has taken over my life. Don't get me wrong, I do have good days. It just seems like I have way more bad days than good days. Like today... it's almost 6pm and I'm still in my bathrobe, and I am absolutely and completely exhausted. My almost 2-yr old is like a tornado on wheels around here... and I feel like I rely way too much on my older boys (ages 11,9, and 9) to pick up the slack with the housework. My hubby, like your bf, seems to be in an "armorous" mood every single day lol. One thing though, he is good about understanding when I am in just too much pain, or if I am just too dang tired. It sounds like your boyfriend needs some educating on this disease. Have you printed out information about RA for him? I saw a sharepost on here not too long ago... where the woman with RA said that she accidentally left this webpage up, and her hubby began reading some of the shareposts. It really enlightened him, and he apologized to his wife for not really understanding what she went through every single day. Maybe your boyfriend should do a little reading on myracentral.com? If he continues to not be very sympathetic or understanding... you may want to consider distancing yourself a bit. Stress is a huge factor with RA and flareups.
No matter how things go, one thing is for sure, this is the best place to come for understanding, friendship, and support. Welcome! If you ever need to talk or vent, feel free to send me a message. I always welcome new friendships!
God Bless,
Suzi
Hi Suzi,
Thanks so much for responding to my post. I can't imagine having kids the ages yours are and dealing with this disease. My children are all grown - 28, 26 and 22. They live in a different state than I do, so I only get to see them a couple of times a year. Same with my Mom, so I don't have a very good support system in place. My biggest supporter was my sister, and we lost her in May. She called me nearly every day, and boy do I miss those phone calls!
I try to keep a positive attitude most of the time, but sometimes it's hard to. The new meds my rheumy put me on a few weeks ago make me feel lousy for a few days. I am currently taking methotrexate (four 2.5mg once weekly) and leucovor the following day (two-5mg). One of my biggest problems is that I don't sleep well at night at all, so I wake up feeling like I've been run over by a truck. I usually have two, maybe three days where I actually can get a few things done, then it's time to take it all over again.
One thing I have to give my BF credit for, he never complains about the house. As long as I can get the laundry done, and I can throw something together for dinner, he's okay. But there have been times when he's said many hurtful things, and some things are just impossible to get out of your mind. I have thought many times about going to Georgia to be with my (83-year old) mother; she's having a few health problems and my only other sister lives in Houston. The only reason I haven't gone is because I love my rheumy. She is so wonderful to me, and we finally feel, after almost five years, that we are making some progress in my diagnosis, so I hate to leave right now.
You have a pain-free day (if only!). Thanks again, it's nice to have someone to talk to who understands.
Best wishes,
Tina