I've been living with RA since January 2001, was 19 at the time and was in my second semester of first year university when it was diagnosed. It was extremely difficult to accept in the beginning stages of the disease since I was constantly in pain until the meds started to kick in. I am slowly becoming more and more accepting of it as time goes on I guess. I did not want to be treated differently than anybody else so I only told a few very close friends. I never used RA as an excuse for anything even during exams. I've tried to show that I can still do everything that anyone without the disease would achieve. How have your attitudes been on this issue?
Two summers ago I went off all my meds to try a Homeopathic treatment (which failed miserbly by the way) and since then have not been as well as I was before I went off all my meds. I am not married, but in a relationship that could lead to marriage... How difficult has it been for your spouse to fully understand your condition especially during flare ups? I suppose it would depend on your individual situation but i'm generally speaking. There's a difference between seeing someone everyday and living with someone everday, you know what i mean?
I'm 28 and was dx'ed when I was 7. Unfortunately, RA caused me many changes and I had to use it as a reason for explaining why I couldn't take gym class or do other things. I've been married 10 years now. My husband knew going in that while I was considered in remission at that time, I still had problems becasue of past damage. He also knew that it could come back and that I may never be able to do everything I'd like. I got lucky, blessed, however you wish to look at it. My hubby is the most understanding man in the world. He never once made me feel guilty about not working (I feel guilty but he isn't the cause). He's never made me feel bad about asking for help around the house. Like a normal man, I do have to ask him repeatedly to get things done. He has been more accepting of this than I am. He also recognizes when I am at my limit before I do. I think it's just that I try to push it and he knows when I shouldn't push. He doesn't totally baby me though. He pushes when I need a push. All in all, marriage is work but we've worked hard together to keep close and able to live entertwined lives affected by RA.
Jabebi,
I like you additude. Mine has been much like yours. I've lived with this disease for the past 11 years...and honestly only the ones closest to me know I have it. I've always been like you...I don't want people to think I'm the "sickly" type. I don't like to use it as an excuse...but at times I have to retreat into the security of my own home and give myself time to regroup.
5 months ago I married for the second time. I was hesitant to begin this relationship in the beginning because it is difficult to deal with relationships; especially when the person you're with doesn't understand what's wrong. I pushed my now husband away for a long time. When I finally did tell him that I had RA he did all sorts of research on his own to try and understand the illness better. My heart just melted. I slowly but surely let him into my life and now know that there are men out there that will love and care for us and not consider it a hardship. He's everything to me and I charish the relationship we have. He understands it all; from the fatigue to the pain I feel the second I wake up...and often while at rest as well.
You are right. There is a difference once you start living together...but my best advice would be to help him understand every aspect of what you face. Don't constantly complain...but be honest about what your feeling. Only you will know if it's right for you; but having a partner in life that is loving and supportive is so very important in our situation. You won't be able to be the kind of "housewife and mother" that some men picute for themselves...and as long as he understands this from the beginning there will be less problems later. It's very, very difficult to manage small children, housework, a husband and this dreaded disease all at the same time. The support of a loving partner is so important.
Thank you so much for sharing that with me guys! I'm so glad that I have found some people who share similar struggles and frustrations as I do regarding RA. It's just not the same discussing issues such as this one with someone who doesn't have RA because no matter how hard they try, they will not fully understand. Thanks again.
Hi Jalebi. I've got to jump in here regarding your question about marriage & RA... I've been married for 21 years, and for all but the last 5 months, I've done pretty much EVERYTHING around the house. My husband works really LONG hours in addition to having a bad back & bad knees, and I've worked off & on. Even when I've worked full time it was never as many hours as he did. Therefore, I've never really expected him to help out with household chores. We have 2 kids, ages 17 & 10. I have made the mistake of doing pretty much everything for them too. That was OK until I developed RA. Now it's kind of a crisis (especially for me!) For you, however, you can START right off the bat in your marriage sharing the household responsibilities. That'll be MUCH easier than trying to change 21-year-old habits! Not being able to keep up with the housework (I do work outside the home also) and not being able to get much help from my husband and kids has been one of the most frustrating things about having RA. They just don't get it. I would encourage you to consider the way your fiance was raised... did his mom do everything around the house? Did his parents have "traditional" male/female roles? That often leads them to expect that their wife will do the same (even in these modern times!) How self-sufficient is he? How considerate is he of your feelings and your needs now? Does he understand what RA is all about? When we take those vows "in sickness and in health" we usually assume it'll be "in health." It's a bummer when it doesn't work out that way! And it's hard to predict how we're going to react to hardships if we haven't had any yet! It's good that you're thinking about all of this now and not later! You'll figure it out. Good luck.
Hi, I'm Juliah and have recently been diagnosed with RA. I was also diagnosed with congestive heart failure when my son was born 7 years ago. I continue to work part-time, as my health/energy allows and have decided not to go on disability, though I do qualify with the heart condition. I am fairly open about my conditions, when appropriate. For instance....I am honest when someone asks me to chair a PTA committee and I chose to let them know of my limitations (I end up in the hospital several times a year). I love to volunteer at my son's school, but I don't take on more than I can handle and by letting others know of my condition, I am letting them know I am not going to be very reliable as far as consistently attending meetings, etc. By this, they don't get the impression that I am a "slacker". I also stood up in front of my chuch when asked by the Pastor. I told the congregation of my heart condition and how I felt closer to Jesus b/c of my struggles. I ended up meeting many women in my church with health struggles who had no one to turn to. One of the women I met is now one of my closest friends. Another confided in me that she, too, has congestive heart failure. We have bonded over the past 6 months and shared so much with each other. Janet is a dear soul to me, and sadly is in the care of Hospice and is near death. I feel so grateful to have met Janet and she has taught me SO much about life and death. I would never have met her without sharing my health situation.
I do not bring up my health without cause, nor do I complain to anyone. I do not feel sorry for myself and I do not elicit sympathy. I know that there are those who struggle with things MUCH worse than congestive heart failure and RA. I think of the many children I have met with cancer, burn victims, etc. I thank the Lord every day for my life and would not trade my health conditions for anyone else's. The people I have met, the things I have learned (foremost trusting fully in Jesus) are things I would not trade for anything.
I am not ashamed of my illness and I do not feel "weak" or "sickly". On the contrary. I feel strong in a way I never felt before becoming sick. I hope and pray that others don't view me as the "sickly type", but rather one who has endured difficult health problems and who takes every single breath as a blessing.
I see no shame in sharing my health condition. I think that it has helped me to reach out to others, who I would have had no idea were suffering (in silence). There are no awards given out for martyrs who suffer alone. We need friends. I do not know what I would do without the love and support of my women friends.
I don't try to live my life as though I am in perfect health. I am not. But, there are many things I can do and I do them. I don't use my health conditions as "an excuse" to get out of doing things I simply don't want to do. But...I AM honest when someone asks me to do something I know will make me feel worse.
I talked with another mom last night at my son's baseball game and she told me that she has fibromyalgia/CFS. I was able to connect with her b/c I understand the fatigue, etc that she is going through. I didn't think any less of her for sharing that with me. It showed me that we have common ground and I have a new friendship out of it. I know that we can lift each other up when times are down and the rest of the time, we can both rejoice in the fact we're both having good days :)
I'm not criticizing those of you who keep your disease entirely to yourselves. I'm just sharing the way I handle things and how blessed I feel for doing so :)
Love and hugs to you all, Juliah
Cris
I am 47 have been diagnosed with ra for 5yrs and with oa and pa for a yr. I have had some very difficult times, but my husband has been right there for for me through thick or thin. I am a very active person, I work outside the home, I have 5 perenial beds that I take care of, 200 hundred rose bushes, I do embroidery, floral arragments, and mnay other crafts. last year was the first year I had difficulty working in the garden, my husband and daughter pitched in and was just so wonderful!!!!! My job is very physically demanding, I work 3rd shift stocking and working a recieiving area so that I can be home during the day with my daughter. I have good days and I have bad days, I have learned to do what I can and don't sweat the little stuff. If you care very much for this person, that you want to spend the rest of your life with, then let them know what is going on. Educate them as to what ra is and what could happen, there are excellent books at the library that you can get for them to read, or go to Barnes and Noble and pick up a couple there, they have some excellent books that you can purchase to keep at home for reference. Remember the wedding vow say "through sickness and in health" if they want to be with you they will understand and will be there for you. good luck and please let us know what happens. I will be cheering for you!!!
I'm new on here, but I can relate to your struggles...especially with fatigue. My wife fought fatigue for years. It really is hard on you, seeing your wife so tired and physically drained...all the time. Then a friend recommended a brand of multivitamin we'd never heard of. We were so desperate, we would have tried ANYTHING!! So, we tried it. We were astounded when within a week her energy level and consequently her spirits, were back to normal! Well, that's our little experience with fatigue, and thank goodness it's over. God bless you all, and keep up your spirits!
Jason
Jason;
I don't know if you are trying to advertise or what, but please understand that multivitamns are nice to take to help with keeping a good diet ,in no way, though, is it going to relieve ra or the fatigue that is associated with it.
Hi Meme,
No, I'm not an Ad-monger! I haven't placed any ads, nor do I intend to do so. I do however feel strongly about supplementation, because I've seen it help many people. I'm curious, are you an arthritis or fatigue sufferer? If so, have you tried supplementation? You seem to speak as an authority on the subject so I'm curious as to your results with supplements. Thanks, and keep up the good work.
Jason
Jason; I have ra pa and oa besides hypothyroidism that should answer your question.Hi meme,
Actually, my main question was...what supplements have you tried? With what results?
Thanks,
Jason
i am on a multi vitamin, fish oil, gloucosamine, and b complex. My meds are ultram and naxporin for pain. mtx and enbrel for ra and pa and pamelor when I need it to sleep and synthroid I try to keep pills down to a minimum because even with a full stomach they can make me sick, Synthroid is taken on an empty stomach though. i try to keep a very balance diet and eat fish at least twice a week and keep red meat down to once a week. Lots of veggies and fruit and fiber due to slow metabolism. Lots of water to help flush my system after the meds. I forgot I also hwear pain patches on the palm of my ahnds when the pain is very bad.Have you tried an antioxidant supplement? It sounds like you are taking some good ones...maybe add some grapeseed extract, about 300mg per day. Fish oil can be up to 4000mg daily, and glucosamine should be about 2000mg daily. Lots of times we need higher levels than what we think...just an idea.I am not interested in taking anymore supplements, like I said I am keeping pills down to a minimum. Thank you.