Insiders View of a Support Group

This post is composed of comments from members of a private support group I have been a member of since before Google was a search engine. It's valuable to have support, and it's great to be able to increase your social support network online. The hardest part is finding a group of people who are compatible.

Julie's comment

I found this Group by accident.  I was searching for something else and a little box came up on the right hand side of the page advertising the RA Yahoo Group.  I read a little about it and decided to join. I lingered around for awhile reading the messages and then started sending messages and questions.

I am not one to join any kind of support group, but this group was so interesting to me.  It was nice to find others that suffered with the same auto-immune disease and who really understood everything.  Each of you have contributed to my education of this disease and just listened to my whining - giving good advice.  Others think they understand this disease, but they really don't. The only people who really understand are people who also have an auto-immune disease.

Thanks to each of you who have contributed.  Everyone on this group is so very nice and I thoroughly enjoy knowing you online.  I just wish we could all meet one another in person.  This group is also a special place for me.  Thanks for letting me be a part of this group and thanks again to Penny and Annette for overseeing everything.  And - Thanks to all of the members for being so supportive - not only about RA - but, about everything.  
Penny, the group "owner"

I’m glad I invested in this group too, it’s such a special place for me and you all are like family. I do enjoy our time together each day so much and as you said I’ve also learned a huge amount. I guess there are many things that the doctors either don’t have the time to explain or many things that they simply have no idea about because they don’t live it. And to think when I first joined here, I really didn’t think I needed a support group. How wrong can you be?!  

Roze

I am happy you found this group too.  I have learned so much from you and always appreciate your sharing.  I think our group is unique.
Maggie

I have to say I love this group a lot. I am not in any other group. Don't need to be as everyone here is just the best and I have learned a lot from this group.

I would be lost without all the support I get from everyone here. I class them as my second family  xx.uk 

Grammy 
I'm with you Maggie.   This is my only group as well.   Just feel like I'm always behind lately since shuffling kids more often

Our Doctors
Roze
My idea was to make a list of things that docs could share with their patients that we had to learn from each other, and/or things that would make our lives a little easier without having to go through trial and error.

Penny
We were talking about the things that we’ve learnt from being in this group, versus what our doctors have taught us. I said to Roze I wasn’t sure if the reason for the lack of info from the doctors was due to lack of time, or lack of living with RA themselves.
Polly

I think they know what the "words" mean but they don't know what the "experience" is.  For example, I don't think my pulmonologist (as good as he is) really appreciates what it is like for me to have the lung conditions and RA running around my body and the Fibromyalgia kicking in some pain here and some pain there. They seem to live out of their textbooks and we live out of our life's experience.

Benefits
Maggie

I discovered from all of you, for example, that I was not lazy.  In the beginning, because so many treat you like if you'd just do a little exercise you would be all well again, and you all taught me that my experience was real and you validated that.  I think validation is the best medicine. 

Grover

Penny

Me too Maggie and I’m not lazy either. I do have a group of girlfriends online, we all met in a chatting mums group when I first went online about 15 yrs ago, and many of us have now met in real life when we had a meet up in Dublin. We trust each other implicitly like a group of sisters and have seen each other through a myriad of trials and tribulations and through a ‘lot’ of laughs. They are like family and so is everyone in this group to me.

Maggie

Like you I don't tell my husband half of the things I worry about. He has enough on his plate.
Penny

That’s a good valid point, sharing things here takes some of the burden off our partners I’m sure of that. 
Roze
That is a considerable benefit to not have to share with husbands when you can share with us.  Good point Julie

Penny 

Well I have one idea right away Annette, and that was thanks to you. You mentioned the silver ring splint company to us, and that led onto me not only getting my own splints made, but in being referred to an OT, something my rheumy (not one of the ones I’ve had over the years), had ever mentioned despite me already having finger deformities. These things should be discussed early on in my opinion and not after the damage has already been done. Prevention is always better than cure

Silver ring splint from Digisplint.com above and on my finger at left




Red

Having support is a good thing... I knew I needed it and feel blessed I have all of you here... Even if I don't post as often as I should...

Splints are not Glamorous

When I was first diagnosed I saw an occupational therapist who recommended that I wear resting splints at night so that my hands and wrists would feel better in the morning.  They are quite effective for that and I have worn them for 25 years - of course they need to be replaced every few years.  To deal with the fact that plastic can make you feel very warm, even with small ventilation holes in it, I cut up cotton socks to wear as liners.  I posted these pictures of the resting splints that I use for my hands and wrists at night in my online support group.

This is the comment I got from Judy after she saw the pictures.

"Your hand/wrist splints look very much like mine.  I don't have to wear them much anymore.  I used to wear them every night.  One night, my arms got stuck together with the Velcro on each splint.  I had to have Jim help me get them separated.

I can put them all on and look like I am ready for Halloween. You should see a box in my closet - I have about every kind of splint you can think of in the box plus ace bandages.  I have all kinds of ankle wraps.  I used to go out of the house looking like some kind of a mummy with all of my wraps, splints, etc."

So that really brings home the glamour, or lack thereof, of taking care of yourself.

For my fingers I have found a more stylish and very effective alternative. Silver ring splints keep your finger joints in a good position and look like up to date and unusual jewelry. The most frequent use for them is to correct a swan neck deformity (love the RA vocabulary). I can show you a very obvious example of that, and will, but be aware that with more effective drugs and treatment you don't see fingers like this so often anymore.

So you see here the finger without the splint and then with it. Showing these pictures almost feels like stripping. Unless I am demonstrating textbook examples for medical professionals my fingers are very seldom front and center

The silver ring splints can be used for other hand problems as well (like EDS for example) and can make joints more functional.

                                                                          digisplint.com

I have read clinical studies that say that results of using splints are inconclusive. There are a few reasons for that lack of consensus. One is that people find them uncomfortable or ugly so they don't continue wearing them and leave the trial.  In my opinion the other reason is that those who run the studies would have to follow the people for many  more years than their funding would last to be able to see a difference, and would have trouble finding a control group who would agree to participate and not use anything.

We're all so individual with our autoimmune diseases.

                                                                     CafePress.com

I have more splints but not more pictures, so I will follow up with more in the future. I'm like Judy. A whole box of splints under the bed.  As they wear out. I don't throw them out, just in case.