Lung involvement in rheumatoid arthritis

[orchidcass77]

Please join us on Facebook we are gathering those who have lung involvement in their rheumatoid disease and share any valid information we can find.

facebook.com/rheumatoid.lung/

[oldtimer]

Can't you do that on here? I don't want to join facebook (having had problems with it) and I'm sure there are others like me who don't use it?

[orchidcass77 in reply to oldtimer]

That's fine hun I'm not forcing anyone to join Facebook, I've had my periods of hating the thing too, I can also be found on my "autoimmune me" Pinterest page and on Google+ just trying to gather people who may feel very isolated and afraid in the face of a diagnosis many seem to know little about.

[medway-lady]

For what purpose ?.

[orchidcass77 in reply to medway-lady]

Because I have this manifestation of the disease too and I felt so alone like no one could understand what I was going through, it started out as an attempt at blogging what was happening to me, but now I think it's more of a community with lots of people from all walks of life going through the same scary process. It's now a place where I post any relevant studies on the subject and helpful information. In all honesty I put this here to reach out to those who may want to join. It's not me enforcing it or being pushy and I'm not trying to sell anything, just gather people in a similar situation and for support. Is that not ok?

[medway-lady in reply to orchidcass77]

Yes its great as so many times it seems to me to be a selling thing. i.e. buy Aloe Vera it'll change your life. So nw I know I'll look it up. x I had clots in both lungs and its an RA risk but fortunately rare.

[orchidcass77 in reply to medway-lady]

Yes it's one of the many pulmonary manifestations of rheumatoid arthritis, it sucks hun. I know what you mean about the selling, even now it's been curbed somewhat, I'm getting emails from people telling me to change my diet and take supplements that I already do take. I often feel badgered on these forums so I don't come on very often but was wanting to get word out to anyone who may find it helpful. Look forward to seeing you there x

[Hobnobbing]

There are lots of really good support groups on Facebook. They are there for whoever wants to join them. Very useful if you have a very rare condition and no one near you who shares it.

[orchidcass77 in reply to Hobnobbing]

It was one of the first things I did to look for a support group, I felt so lost after coming out of hospital and all I found about RA-ILD was petrifying, at first I thought "oh my there are no groups cos we all die so soon after diagnosis, in gathering others like me I've spoken to people who have well surpassed the average survival rate, there is one who has got onto lung transplant list and one who is recovering well from transplant, there were many people like me feeling alone. But there wasn't one single support group I could find for such a specific and rare manifestation. Well now there is and I just wanted everyone to know there is somewhere to go. I'm definitely finding it a great help and feel very little morbidity on the subject now. I really hope the other members are also finding it great to speak to others the same x

[JackyL]

Hi . Is there an alternative email address to reply to as I'm not on Facebook now. I have had RA for 27 years and 4 years ago I had lung cancer. I have never smoked or lived with a smoker and I'm convinced the cancer was linked to the immune suppressant drugs I was on. Thanks Jacky

[orchidcass77 in reply to JackyL]

Hello Jacky I believe you may be right hun, glad you are still battling on through all that. You can also find many of my informative posts on Google+ as Cassandra Bird [e-mail] and I have communities related to rheumatoid arthritis, rheumatoid arthritis interstitial lung disease and several others. I also regularly post on the same subjects over on Pinterest, again as Cassandra Bird my board "autoimmune me" has thousands of tidbits of information. Hope this helps, feel free to get in touch. X

[HallJackie123]

I take it there is no way of contributing to this without Facebook.

[orchidcass77 in reply to HallJackie123]

Yes you can find me on Google+ or Pinterest. I'm on here too and always happy to hear from anyone, I'm also on my Ra team and all those good places too. I wasnt eager to be on Facebook myself it just seems the easiest way to reach the most people. At first it seemed I was the only one but as it's grown I realise I'm definitely not alone and many ra patients have these manifestations or are concerned about them. I'm thinking of starting a web page blog but it's a lot of work on top of all my medical appointments, if there is enough interest I will consider it