Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi everyone! I came here looking for advice & support as I don't have a support system at home. Instead I get criticized for taking the meds. I currently take methotrexate injection( makes me ill for days), arava & will be starting orencia infusions next week. I've tried enbrel it gave me a bad shot reaction. I feel like no one around me understands. They're real quick to label me as lazy & complain I tell them I hurt or don't feel good. I've tried to get them to read info on ra but I don't think they have. I feel very alone on this journey. They think I'm just poisoning myself with the meds. I do feel better without them but I know I'm the long term they do good. I'm a stay at home mom since I couldn't hold a job due to being sick all the time. My biggest supporter is my 9 year old I'd be lost without him. Does anyone have any advice on how to make them understand?
Perhaps there's a support group in your area that would be helpful. Our local newspaper runs a list of support groups for various causes once every month or so, with contact info and meeting times. Your doctor's office staff may have some suggestions.
Does your doctor know that the methotrexate is making you feel ill for days? There might be other options for you.
But back to the support system: you refer to 'they', so it sounds like you're getting crap from more than one person in your life. Is there one in that group who might be more likely to understand? Would you be able to focus your education efforts on the most sympathetic one in the bunch (after your wonderful son!)? Maybe ask that person to meet you for coffee, then sit down and say "Hey, I'm struggling with this, and I know I haven't done the best job of explaining it to everyone in the family"..........
(note: that part about 'haven't done the best job' is not necessarily true, but a bit of deflection at this point is always a good idea)
............ "and I'd like your advice about how I can restart the conversation and do a better job communicating"........
(note: the person's advice may be crap, but people just LOVE to be asked for advice)
..........."because I thought you'd be a good advocate for me, so I can focus on managing this disease and getting better".......
(note: WE, on this group, already know you're doing everything you can to get better. But skeptical unsupportive relatives sometimes need to hear those words and be reassured.)
You can of course tweak that imaginary conversation to meet your own needs, and i'm sure some others here can help with the script, too.
You mention that you've provided reading materials. What about taking one person with you to an appointment? Could that work for you? Possibly seeing other patients in the waiting room, listening to the kinds of questions your doctor asks, and just absorbing the professional and caring atmosphere of the office would make your disease seem more 'real' to them. Your reasoning to them could be that you want another set of ears at the appointment so you're sure you're understanding everything your doctor says. People do that, it wouldn't seem like a big deal to the doctor.
You mentioned being a stay at home mom (which IS a job, of course!) because you're not well enough to work. I get that, and totally support your decision. But sometimes having some income helps with your feeling of self-worth and independence, and sometimes that translates to other people treating you with more respect. Is there something that you might be able to do from home to generate some income? Understand that I'm not suggesting that you're slacking at all - I think anyone dealing with RA and raising a young child gets a special medal for amazingness - but it might help you out a bit.
And lastly, Keatonsmm, vent all you want to here. We get it. Hugs and love to you.
it's your RA - like a second job or another child. it's your chronic diagnosis til death. Don't look for their approval - you self approve.
it's crazy making to try and convince anyone isn't it?. Do you have best buds? whomever holds you up, elevate those relationships. I realize a little different with an immediate family. don't go to the fountain for approval. put your self approval out in front of you. make them deal with the fact that you own your self care.
look for disability counseling through your medical health insurance. I have a disability counselor. He's freakin' awesome.
Think about volunteering in your area of skill set, anywhere, anytime you can fit in given your current state of RA. Show off your brains when your joints will not work.
some folks just don't do well with mtx, period, and that's between you and your rheumatologist. I have gone off and on mtx - and you are on the dmard twin of mtx arava. I had orencia for two years. One year by self injection and one year by infusions. the orencia infusion is a freakin' cakewalk. it takes like 20 minutes to go in your arm. you will barely sit down before you are standing up. the pre infuse questions take more time than the infusion. I found the orencia weekly injections easier than all the rigamarole of going in for the infusion BUT my rheumatologist feels like the formulary for each (infusion versus injection) is different in their efficaciousness so she had me do the infusion a year the injection a year. congrats for starting orencia!
your clan is denying your present reality. when you try to shoot the shit with people who try to tell you they know what is best for you that feels like nuts doesn't it? I would not do it. I am thinking find the best friend that knows what your reality is because she has MS or diabetes or some other chronic thing herself. I would not keep knocking on the door of those who don't get it.
I am the one on the list that has a best friend that has RA. yup. I met her this way. I used RA warrior then the find a local support group. I went to the meeting. Everyone was a freakin' bore and whining OVER each other but her. We sought each other out. Our friendship is irreplaceable. She can finish my RA words and mine, her's. Try RA warrior also. If that fails - think about starting a Meet up. My buddy and I were going to do that also. I even asked my rheumatologist if I could use her office space after hours conference room! If you look on meet up - widen it to "auto immune" rather than just RA in case nothing comes up on the search.
Glad you are here.
It's an invisible disease sometimes, but we see you.
depot
There is obviously more to your relationship that a few sentences shared here can tell us, but I'm thinking that the kids' father is maybe not the best person to accompany you to these appointments. We are all guinea pigs in a sense, because RA isn't a disease where one answer works for anyone. That doesn't make your rheumatologist a nut job, it makes her honest. And if Kids-Dad read up on this, he'd know that. So let's think about who else you could draft to be in your corner. Which person in this clan has some influence over the others? If you can get the alpha on your side, you're halfway there, as far as family support.
Depot's said it perfectly: this RA is yours. And the approval you need so badly starts with you. You know in your heart, and in your achy body, that this is a real thing. So if an uninformed person thinks it's imaginary, well, that's their problem. You KNOW. Move on. Create a new clan, find your real tribe. It might not be people who are biologically related to you at all. Think about your friend with lupus: on your good days, you can carry her groceries in from the car (or whatever) and vice versa. You can lift each other up in so many ways. that's more 'family' than shared DNA.
Keatonsmm, you have a big heart, and you want the people in your family to love and support you. It's only natural to want that. But maybe they just can't. Maybe their hearts aren't as big as yours. Focus on your health and surround yourself with people who get it. If there aren't any support groups, maybe you can start one. It doesn't need to be a big deal. Ask your doctor if you can put up a sign in the office, and maybe put one up at a grocery store or pharmacy, advertising a meet-and-greet at a local coffee shop some morning for anyone who's dealing with an autoimmune disease who needs to talk. For all you know, you've got someone around the corner from you in the same boat who's also searching for support. Take your friend with lupus and go to the coffee shop a little early that day. If no one comes, the two of you can have a nice quiet morning to yourselves,a nd you try again later. If one person comes........you're on your way.
All those great support groups that are out there were started by someone just like you or me. You don't have to have all the answers before you start one.
I don't know why this disease is so hard to understand! My husband was 10 years before he decided maybe I wasn't lazy and being a malingerer, after he talked with the orthopedic surgeon before and after my foot reconstruction surgery. That made it real for him. About the 5 th year I had RA, I was on mthx, and it was not enough, but better than nothing. Hubby had put down rocks around my raised garden beds, with tar paper underneath. The weeds were enormous, I couldn't pull them out. I had begged him to put down black plastic and mulch from day 1.
My son and his future wife were staying for the summer, working between university years. They volunteered to help with pulling out all the rocks, and putting down the black plastic and mulch. But he insisted I pick rocks, too! I was afraid it wouldn't get done, so I worked for three days. I had massive flares in my thumbs, and when I took a bathroom break, I would sit in my room and cry my eyes out the pain was so bad. At the end of those three days, I had huge bunions in my thumbs. Today, my thumbs are so bad I often cannot use them, even with thumb caps to protect them. My rheumatologist wants me to have them rebuilt, but until I totally lose function, that is not happening. (I've had one bad experience with foot reconstruction, and I am convinced that for me, reconstruction surgery will make things worse rather than better!)
The point being, my husband had no clue how bad I was, despite seeing me so flared I could barely walk. He has apologized a million times, and regrets it immensely. I should have just said "no" and saved my thumbs, but I really didn't understand how badly and quickly joints can deform if you use them if they are flared.
Now, if I am having a bad day, he gets it, and doesn't complain about supper not being made, dishes not done, etc. (The poor man cannot cook! LOL) But it took a long time! I also had my daughter for support the early years. She was 10 and dressing me, and helping me brush my hair and personal grooming. I had no one else, and I was not on any meds, because I was improperly diagnosed.
I worried how she would turn out, having to not just parent me, but treat me like a baby. She is a social worker, married to a doctor, and has never had a problem. Sometimes, giving a child real and big responsibilities is better than just "letting them be kids!" Actually, all our children had a lot of responsibilities in the home, but she had the most, being much younger, and her 3 older brothers having moved out when I got sick. So, keep loving your 9 year old, and he will grow up to be a more compassionate and caring person, I believe.
I had a cousin who had RA from the time she was 1 1/2 and has terrible deformities. She gave me a lot of support, and got me in a real life RA support group. But the group folded after 30 years, because no one wanted to do the work of planning, fund raising etc. But still, for a few years, I got to see real people with RA. But it is not the same as having a spouse who understands, because you see them every day.
My thought is you need to let your husband see your xrays, and how your joints are deforming. No one can really understand the pain, of course, but sometimes seeing damage is a wake up call for people who don't understand RA.
I am also on mthx, Arava and Orencia. However, it is not nearly enough. I can't take a full dose of mthx, because of liver issues, which I think would make some difference. I had quite a few good years, with various med combos. I accomplished a lot, and I cling to that, when the pain gets bad. I really hope this works for you. I never had issues with mthx making me sick, except for maybe the first 6 weeks the first time. I had a break of 7 years, and went back on. My rheumatologist said it was going to be starting over. The first week I was sick the first day. The second shot, I was sick about an hour, then I have been fine ever since. I do hope your body adapts to the shot.
Welcome to the group, but sorry you have RA.
I do hope you find a way to reach him, sooner, rather than later. As for that weight, I always gain enormous amounts on prednisone. If you want some stored fat, I would be happy to give it to you! LOL Just trying to make light of a very serious RA problem!