I am new in this sight and a little afraid I have never done this sharing before.
I have RA finally diagnosed a year or so ago. It is progressng rapidly. I was in a clinical study for orencia and methotrexate. They tooke me out of the study because my liver counts were sky high.
I just finished my second injection on enbrel. I still have to take the medication to the dr office because they havent had the time to teach me how to do this myself
I am really discouraged. I want to feel better and thus far including the clinical trial I dont see a difference it only gets worse.
I feel like I am not a good wife...or mother. My husband is supportive as he can be and My adult children are too.
Its just that I dont like to depend on anyone ....
Sure hope things turn around soon.
ThanksDear Kathi, I'm sorry to hear that you're having such a hard time. I feel for you. I hope you start to get some relief too. I have the same feelings as you do....feeling as though I'm not a good wife/mother, etc. It is hard to have to let go of some of the things I used to be able to do. Also hard to let go of some of the expectations of how I thought life "should be". There is still beauty amidst the storms my dear....don't lose sight of that. Keep your eye out for the rainbow. Love and gentle hugs, J Hi Kathy, unfortunately RA is a battle and a half, it is a long hard road with lots of challenges, especially trying to find the right medication, I wish someone would have told me when I got diagnosed that it is common to be unable to tolerate a lot of the drugs and therefore a constant battle trying new ones all the time and getting different side effects and frustrated with everything. I hope you find something that suits you very soon, but don't be alarmed if you take a while to work it out with your DRs, it has been 6 years for me and I have tried every DMARD and am unable to tolerate any of them due to allergies or hypersensitivities. So I guess I am saying, hang in there, get a good support network, above all a good GP and Rheumy if possible.
Your family sound like they are coping with it, unfortunately, it is us who suffer all the guilt trips etc, what with being unable to do the things we used to do. Try and get some community help as I now receive 1.5 hours per week of domestic help from Blue care which really helps my hubby as he does not have to do the floors or the shower and toilet. Don't be afraid to ask for help, I get so depressed at times and that is perfectly normal and by coming to these boards you can see that the way you are feeling is very normal and you won't feel quite so alone. Best of luck, hope this has helped a little, Janie.
Hi Kathi,
Just keep reading and posting and you will see that we all hate this disease! I've had it for over 20 years and I'm still trying to find the right drugs, the right dosages, the right adaptive equipment, etc. At least you can have hope that your doctors can limit the damage done to your body. They have so many more options now.
Good luck and keep us informed
Kathy
Kathi, Hang in there and keep trying the drug combinations to find something that works for you. It's so hard to go from being so independent and being the one that everyone relies on to needing help. Your husband will adjust as you do. It's hard for family to see you in pain and also hard for them to change their expectations of you. But they'll be there for you. Ask for help when you need it and do what you can for them when you can. Good luck! Kathi, We all hate this disease but I think it can get better with the right meds and we learn to adapt. RA teaches patience. Wishing you and ME patience.I was in tears yesterday with my daughter who is temporarily staying with me. The problem is that it is so hard and so humilating to go through the disability process. You have to fill out all these forms and prove how really sick you are which is most discouraging, but really I don't want to prove this. I would rather live in dreamland and pretend I'm not so sick. But you have to put it down in writing and get the doctors to do so again and again. It feels like putting nails in your own coffin.
Anyway, my daugther was spending her money on stuff she didn't really need which she is apt to do. And, I'm counting every penny just hoping I can make it through this nightmare. I had to explain to her why I was upset because I wasn't really being fair.
She sat me down and told me that I need to tell her the truth about my situation and that she has my back and she will help me any way that she can because that is what I've always done for her.
It is really hard when we start to lose the ability to do things we used to take for granted. But you just can't, can't feel guilty about it. It isn't our fault. We are not lazy. We are sick.
I agree that they don't warn you at all what you are getting into. I think that's unfair. But I think the doctors just want to be optimistic about our outcomes. So many people do respond to the meds and go on with their lives reasonably well.
It is those of us who are the exception, whether we experience unresponsiveness to the meds or extremely aggressiveness of RA in our individual systems, that really struggle.
But you have to keep trying to find a solution. Throw the guilt away though. This disease has no bearing on the quality of your parenting or your worth as a human being. RA cannot hold love prisoner even when you can't walk, move, feel like screaming in pain. Love can still rise above it. Hang on to that in all your relationships. It has wonderful, irreplaceable value.
Deanna, What a wonderful response. It is true - I think it makes us love even deeper because we have to slow down and pay attention to the ones we love.I have compensated in many ways for things that I can't do any longer. When you have Ra many things in life are a tradeoff. When I can't do something any longer I find something new and different to learn and do. Because I lost the ability to take long hikes I was able to learn a new language. Because I lost the ability to make beautiful beaded necklaces I was able to substitute larger beads and now make beautiful, large and bold pieces of jewelry. Life with RA is about substituting and balance in your life.
Stan and I are closer now than ever. Work doesn't come between us any longer. Neither one of us are stressed because of high stress jobs.
I've maintained good relationships with my friends and my son. My grandchildren are lovely and helpful. You are who you are, a loving woman not just a woman with RA.
I've gained 50 lbs., can't wear a bikini, my skin is no longer my skin. PA has attacked my toenails, my hair is different, my knees are swollen, my ankles don't exist any longer, but I'm still that focused, spirited, loving woman that I was before RA, maybe even more so now. RA has taught me many lessons.