Rheumatoid Arthritis Support Group

I've had RA for 33 years now. It started at 13, went into remission until 29. I was very lucky for that, but the last 15 years, it has come back with a vengence. I'm only 46 and already fully diabled. My father has RA also and seems to be my only family that truly understands what I;m going through. I have 4 kids(13-25) and they try to help but more often then not, they end up making me feel worse. In the last 3 years, my RA meds side effects have caused other illnesses: ulceractive colitis and COPD. I've had to be put on anti-depressants also. I have always been strong and a fighter but in the past 2 years I have deteriated so much I just want to give up. i won't because of what it would do to my children. I have a wonderful doctor and but I have no true support system. I had a boyfriend who broke up with me because he "just couldn't deal with my problems". I just need people to talk to who knows what this disease does to us. My goal is to find compassion and understanding from non-judgmental people.

Hi Debbs, you'll achieve your goal here. Everyone's caring and understanding and noone's critical. I've raised my boys alone and since their preteens I have never felt good just never knew what was wrong. Docs couldn't find anything in tests so hey, I must be crazy right? Everybody around me was always trying to DX me and getting help was impossible. I've had so many statements made to me about what may be wrong and what I should or shouldn't be eating or doing, if I had listened I'd have been in a plastic bubble. That changed the last 3 years as I got worse and it's true when it's said "you find out who your friends are". Dating and husbands are issues that keep coming back here. Takes a special person to try and understand this.

Sorry you have dealt with it for so long.

So glad you found us. Welcome.

Hugs, Donna

Debbs, you certainly DID come to the right place! And we're glad you've joined us. We all know the feeling of the lack of support and understanding. People just don't get it if they don't have RA. They say, "oh yeah, I get achy too." ACHY! HA!

My husband has no empathy regarding this disease, and you'll see that as a common thread... Some have wonderful spouses, and they are fortunate, but it seems that more than not spouses and significant others just don't understand it. They cant be bothered, inconvenienced, and certainly don't want to listen to any complaints of pain or exhaustion.

Depression is also very common among people with chronic illness and pain, and many people end up on antidepressants. It's not a bad thing, an there's nothing wrong with it. It's just the way life is! Constantly being beaten down gets to a person after a while, along with the constant pain, exhaustion, frustration, loss of what used to be,loss of independence,taking medicines that no one wants to take etc... Who wouldn't be depressed?

So, come here whenever you feel like it. We don't require a good mood to be here! You can vent, cry, tell a joke, share a recipe, ask a question, or do whatever makes you comfortable. We don't judge. We don't tell you to suck it up and get over it. And we don't say ,"BUT YOU DON'T LOOK SICK!"

I think you'll like it here.... welcome aboard

Thank you for making me feel welcome. I don't have a husband or significant other so I handle thingss on my own. I have been on full disability for 5 years now and I'm still lost. I miss working, having co-workers and just having my independence so much. It gave me a sense of self-worth that I no longer have. I used to be a strong self sufficient woman. I just get tired of people expecting more then I'm capable of doing or even getting upset if I ask for some company once in a while. I know it could be worse and I'm on a ppitty pot right now but if only others could walk a mile in my shoes then maybe they show compassion and understanding. Thanks again for your response.

debb

Thank you Donna for your kind words. I've raised my 4 kids basically on my own and many times I still have to explain to them why some days just suck for me. They try and help but I can see resentment or disappointment when I'm unable to do my regular mom duties. I joke about my deformed hands and feet and then later cry in my room when the pain becomes unbearable. I've spent so many years covering up my misery but I'm just not that good at it anymore.

Thank you for making me feel human and normal for my condition.

It takes it's toll on our emotions at times, that's for sure. Nobody in my family history has had RA. Nothing AI for that matter except my dad - Alzheimers. Then 2 months ago my sis 5 yr's older then me got DX'd with Lupus (still waiting on a definite). So noone in my family understands what I deal with. I get alot of "yeah my knee hurts sometimes too" and even got "I have it in just my right shoulder". I've learned to just let it go. You can't explain the pain of RA joint pain at it's worst to someone who has never felt it. I'm bad for secluding myself when the flares are bad. It is a lonely disease and why these groups are so helpful.

Hugs, donna

Remember.... "its like having an ice pick jammed into your joints".. that one makes most people really wince.... lol

Debbs, not being able to be there for your kids is really difficult. I know that feeling too. You can only do so much. Everyone has some kind of limitations in life, whether physical, financial, emotional, etc... so I just look at it that way. I no longer try to be SuperMom. Its not as if they arent being cared for adequately and properly, its just that you cant do the over and above stuff all the time.

Ive learned to prioritize things with them, and things that arent so important... like attending every single birthday party for their schoolmates, or doing every little thing the PTA sends around... and even those I take shortcuts. If they need cookies, I hit the grocery store. I dont have time or energy to bake all evening after working all day, making dinner etc. If they dont like them, they dont have to eat them! lol I grew up in a household where we didnt have much money and I survived without any major scarring, so I figured Im already doing more for my kids than was done for me so they'll be just fine. You just show them love, support, and participate when you're able.

Hi debbs and welcome to our family. We are here for you whenever you need us so make yourself at home and let us give you any support you may need. These people are the best

Connie

Karen, the icepick is a good quick description. For the ones that have asked me and really want to know I tell them it feels like acid poured into all the small joints and they're being munched away.

Hi Debbs: No one here in this group in is judge-mental nor will they comment poorly on anything You may say/ write except me. Generally I'm usually angry about something and need to tell members exactly what they need to do. Just kidding !!! Welcome, ! ! ! I'm the guy who rambles on about stuff i have no idea about and usually can't remember what I'm writing about and nothing i say makes any sense BUT I mean well and when i wrote about being angry I wasn't kidding RA really ticks me off. Joining us is one of the best things you could have done, support, advice, reading crazy crap that I write will help you survive the crazy world of having RA. Your newest old fossil friend of a Dog Shepherd Trainer