RA & Relationships: Finding Hope In Online RA Support Communities

11/27/12 11:33am

This is a very helpful article. Ironically, sometimes the unpredictability of RA, when you happen to be BETTER than you expect to be, you can feel like others may be thinking "so there really wasn't so much to that, was there?"

I really like V and Miscelle pointing to how we can and must educate those whom we know and meet. How would they know otherwise, unless they have themselves had a family member (and "got it") or themselves with the disease.

I had my grandmother to remember ... when i first got diagnosed, I remember thinking - Oh my gosh - now I understand why she just sat on the sofa and smiled at all us kids. Painful smile, but she really did make it clear she enjoyed us. But, as far back as I can remember, she never once did anything with us. She and my grandfather would have our family over for holiday dinners, or we would have them over. I never thought about it growing up, it was just the way it was.... my other grandmother, who was a widow, would have each grandchild stay overnight, play canasta, make dinner, do diishes, watch Perry Mason on TV, sleep, and then do art with her on Saturday morning. She brought wonderful chocolate cakes with walnuts on top for birthdays and holidays. . . that was just the way SHE was.

I'm in a really strange position right now. For the moment, all my inflammation has disappeared (SED = 21) and I'm off all RA drugs. I'm still in pain from other things that were buried while I was on those drugs. And there is even less I can do about that pain - just my usual 1/4 to 1/2 dose Percocet I actually need MORE of that now). I'm guessing that once again, in March or April, it will ROAR back as it did last spring, and I will be SO back on (or newly on a new drug), it won't even be funny. My muscles are still weak and seem to be atrophying, I have new pain in my left ankle and pain worsening in my left lower back down to my knee... Guess that's my current "New Normal"....?! But I'm learning to take it one day at a time in a new sense. My rheumy is concerned that something else might be going on and so far I've had a chest xray (negative), urinalysis (negative), blood tests (negative), and last night I was at the sleep lab (results to be available in about 10 days). I think the concern is that sometimes when RA seems to disappear, it's because some other time bomb (infection or cancer) is rearing up. Will let you know...

But - back to B, THANK YOU for all your help, and your ability to articulate the ins and outs of relationships. I feel VERY LUCKY to have found this site, and to have friends here. And even when I go away for a while - you all are there when i return!

V, Health Guide

11/27/12 2:53pm

Hello, Sweet Lady!

I'm glad you liked the article. And you are part of our family, whether you are here every day or just once in a while!

May I ask why you are off all your RA meds? I read you said your rheumy wanted to make sure nothing else was going on. Will you go back on your meds once he is satisifed? I am just worried about RA coming back with a vengeance and knocking you on your backside.

Orencia has lowered my SED rate to normal range, but my rheumy doesn't want me to stop Orencia. But...I am sero negative, so she doesn't go much by my blood tests anyway.

Not trying to be nosey...honest! Just concerned.

Hugs,

V

Ellen Galo

11/28/12 8:49am

Hi V,

I stopped Enbrel because I had to, it would make me seriously depressed until it wore off. I met with the doc and decided on Orencia. He knows the RA usually roars back within 2 months. He is in the process of getting the pre-authorization. That's the main reason I haven't started anything.

But my body is weird - last winter I only did 4 shots over 3 months. If I did more, I would start to get a sinus infection. And there is really no sign of inflammation right now, just the damage I have plus osteoarthritis. So I may want to hold off until there are signs it is needed. Otherwise, I'm heading for a serious infection. I think what happens is that when I (as usual) lose energy during the fall and beginning of winter, the RA also loses energy (after all, it's my body fighting my body....). I would end up on antibiotics for infection and have to go off the med for 2 weeks. Then if I started up again, it would happen all over again - so it just didn't make sense to keep doing that.

I have not gotten word that the Orencia is approved, and when I talked with my PCP, we agreed that if I don't need it right now, it might be best to hold off until it seemed appropriate. I certainly want to have it there when I'm ready!

I have always been a quick responder to meds, so I have to be ready to switch gears in both directions! (sittin' on the fence, always)

V, Health Guide

11/28/12 10:16am

Ellen, your posts make me smile. You are a bright woman w/a very active mind. Just a quick note about Orencia...and it is a good one! I don't feel like I am always on the verge of a sinus infection with Orencia. When I was on Humira, it was a constant battle to keep my sinuses in check! Hope it works well for you, too.

V

Ellen Galo

11/28/12 10:39am

It was your mention of that the helped me decide on Orencia!

Thanks

Ellen

Debra

11/27/12 2:12pm

Thank you for the reminder. I need to spend more time on the site helping others, instead of just reading the posts I get through e-mail.

V, Health Guide

11/27/12 2:56pm

Hi Debra,

It really does help us when we help others, and there are so many people who need encouragement. We need to support each other, because there is so much misunderstanding and lack of support form the general public.

Hugs,

V

Amanda price

11/27/12 3:58pm

I've meet Vanessa in chat rooms, she is a very loving supportive person, along with Kathleen. Kathleen i've known longer. I'm in uk and we have same hurdles. I know without these in my life I would be very lost, scared and lonely. I was a hairstylist and managed a group of salons. So I went from meeting 50+ people aday to just my family. Whom think they get it, but can easily forget till I remind them. I started to become a hermit. In on line support groups, you can scream and shout, laugh, even laugh at our mishaps. It's a escape from feeling alone. With people whom fully understand your emotions. I for one would be lost with out my on line ra pals. We need to educate people, it's not an old persons disease. Great job Vanessa. Xxxxxx

V, Health Guide

11/27/12 5:51pm

Awwwww. Thank you, Amanda. You have been through more than most. So happy you are getting support from people who understand and care.

Hugs to you, sweet lady,

V

Brad, Health Guide

11/27/12 11:22pm

Hi V,

This post really hit home with me. I think this really is a big factor in how many people dxd with moderate-severe RA end up with depression as well. This post sounds just like me. I was DXd, had to retire within months, and within another month or so all of my work "friends" were gone. I did, after some thought, finally realize the fact that these work friends were never really friends in the first place. Just people I worked with and got along good with. When you took the work factor out, it just fell apart. Same thing happened with some social friends, BUT other people who were mere acquaintences suddenly popped up and became TRUE friends that understand where I am in life and support me. I too really enjoy the support groups online and have made many great friends through them. Its nice to be somewhere where most everyone "gets it". Thanks for a great post V!

Brad

V, Health Guide

11/27/12 11:33pm

You and I had pretty much the same experience with "friends", Brad. One good thing about having RA...you learn who and what is really important in your life very quickly. You are a great support group member, by the way. You are funny and caring and knowledgeable. Thank you for all you do for all of us with autoimmune diseases, Brad. As the kids say, "You rock!"

Hugs,

V

Lene Andersen, Health Guide

11/28/12 12:45pm

I once heard alarming statistics about the impact a spouse getting a disability had on marriages. They said that if a man got a disability, 50% of marriages ended in divorce (at the time, slightly more than the general divorce rate). If the woman got the disability, over 90% of marriages ended in divorce.

Chronic illness and/or disability are hard on relationships. Shifting roles, lack of understanding and just the slog of living with health challenges. it's a really difficult process and teaches you who your real friends are. I've had people stick around that I didn't expect and I've lost friendships with people I thought would be with me through anything.

V, Health Guide

11/28/12 3:05pm

Hi, Lene,

That is the amazing part to me. People I thought would stick by me, including family, are not the ones sticking by me. I have made some new, true friends, though. My DH is wonderful. I am so blessed in that department.

V

Carrie Beth Brown, Health Guide

11/28/12 5:53pm

Great post Vanessa and its true, every word of it and its really sad. I am continually amazed and disheartened by how many people who say they are real friends forget about you when times get tough or you are sick. I've got ONE true friend and her husband locally, but the rest have forgotten I exist or send a "hope you are doing well email" every 6 months with no reply or answer beyond. I have better and truer friends that I have never met on Facebook and support groups and forums that are there for me more than my friends. I am grateful to have a wonderful, loving husband who cares and understands about how sick I am and I don't know what I would do without him. Most of my family lives in other states and could care less about me, just My Mom is local and is the only one supportive and understanding of these diseases and how sick and fatigued I am all the time. Our neighbors knew that not only was I sick and forced into full time disability and my husband has been out of work for over 18 months, but not ONE of them offered a hand or help with the lawn, brought over any food or offered a gesture of friendship. It was more fun for them to report our missed lawn care or weed problems due to lack of money and having a partial disabled husband as well, to our HOA and have us get sent "nasty grams" because we weren't 100% up to code. One day, my husband pulled the car about an inch onto the corner of the grass by accident because he was trying to leave enough room on the other side for me to get out and into a wheelchair. Someone reported us for parking on the grass. No joke. people can be down right mean when they don't understand something and don't even try to. It gives me a lot less faith in the human race, that's for sure. It's really a sad reality to know how many people are out there suffering from illness, pain and depression and have no one to comfort them or help them or just make them smile. I'm grateful for the blessing I have in my husband, mom, best friend and online friends. They keep me going when I'm at the end of my rope. But it is still painful to be so alienated from social activities and outings because of my disability and illness. And if there is ANYONE out there reading this who needs a friend, someone to talk to, just send me a message... I'd be happy to be your online friend too. :)

V, Health Guide

11/28/12 6:54pm

Hello, Carrie Beth,

You said it all, sweetie. There are some cruel people in this world. But there are some good ones, too. The friends we meet after our diagnosis generally turn out to be true friends. Unfortunately, most of hte friends we had before we were dx tend to be "fair-weather" friends.

So sorry to hear the people in your HOA are so uncaring. I don't know how they sleep at night. Yet another sign that we need to educate the public about AI diseases and the effects they have on people's lives.

I love reading your articles. You are so diligent about educating others, Carrie Beth. You help a lot of us through your efforts.

In addition to that, you can be so funny! I count you among my friends, and am thankful to have you in my life.

Hugs,

V

wonderwoman

11/29/12 11:37am

So true V, well said.

I have found through my son being diagnosed with severe disability and now with my own decreasing abilities, that true friends are rare indeed, a lot of the time because they don't know how to help or what to say, and also unfortunately because people can be very self centred.

learning to recognise who is a RA friendly friend takes a while and of course, no one really gets it unless they have had it themselves.

But we all have each other

V, Health Guide

11/29/12 1:28pm

I love that phrase you used...........RA friendly............good term, Wonderwoman!

I think some people just don't know how to handle any type of disability or illness at all, some are too busy to slow down and and "notice", and some are too self-centered to be bothered.

One "gift" I have been given by RA is that I have slowed down because I had to slow down. I take more time for the important things in life now. I have met some really great people by slowing down myself.

Hugs,

V

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