Probably a few Facebook pages that deal with RA and everything is very helpful. Talking to others who have the condition is very insightful and just makes me feel good in the sense that other people have it, but bad that they have it. At least we have a common core of discussions and stuff like that, and treatments and stuff, open forum, not censored and stuff by the pharmaceutical company is when we are writing things and stuff like that.

It’s the silliest thing, but for me, it’s Pinterest. You can find a lot of blogs, you can find boards, you can find even meme’s and just to make you laugh. The other resources that I do use is my rheumatologist team, and online support group and people just talk. People share what they’re going through, even they shared tips of things that have worked for them, but those two are the ones that I use almost every day.

My best resource, I’m just going to have to say, is my doctor. I’ve been on websites, I searched the different apps and the different groups, and I just haven’t found much of that to be extremely helpful. And when I go into my doctor and I have a question about anything going on that I wouldn’t think is about rheumatoid arthritis, and it will be. She’ll tell me how it’s connected to that and how if we do this, it will make it better. And so she is my absolute number one resource, and I’ve looked at all those other things and really haven’t found anything else to be very helpful.

I do use the web to research medicines. I also look up my lab results. The Mayo Clinic is a good one that I use. I am also part of a Facebook support group for rheumatoid arthritis, and the people there understand, and they might have been through similar experiences with side effects from the drugs. So, they’ve been very helpful to talk to.

The resources I found most helpful are the Arthritis Foundation and their website and their communications, their emails, their magazines, and the events they have such as the Jingle Bell Walk which raises awareness of rheumatoid arthritis, and also the Advocacy Summit. I also find brochures at the rheumatologist’s office helpful and I take them home to read them and find out if there’s any new information or how research is going or what new medications are available.

I usually use WebMD or it’s many resources. I just type in what I’m feeling or what I want to know, so whatever pops up. I just usually browse all of them, but I do like WebMD.

I have found a lot of use using the patient portal for my doctor’s office. I have also found that Facebook groups for rheumatoid arthritis have been helpful, because I can speak with people that understand and go through similar things that I do on a daily basis.

I’m on several RA Facebook pages that are helpful. Just mainly, you’ll get an a-ha moment every now and then reading somebody that’s going through the same thing. WebMD and Mayo clinic, they have good information. I really haven’t found any apps from my phone that I like. None of them really have worked very well for me.

I think first and foremost, one of my biggest resources is my rheumatologist. I have a great relationship with them, so if I read something about arthritis, I oftentimes bring it up to them just to get their direct feedback on it. Next is I’ve gotten very involved with The Arthritis Foundation. They do have a lot of information, but it’s nice to be more so around people that understand what you’re going through, and sometimes it puts what you’re feeling into perspective when you see other people. And it’s just nice to be able to talk and kind of share your frustrations and your happy days and all of that with another group. I’ve gone to a few support groups there. I’m involved in a couple of their events and helping recruit and fundraise for that. So that’s been very good and beneficial for me. And then I mentioned before, but I did create my own Instagram, and it’s specifically separate from my personal one. It’s just to talk about arthritis. And so I have quite a few followers on there and that’s been great because when I’m going through something tough or just feeling down, the amount of people that comment or message you and just say they’ve gone through the same thing and it’s going to be okay or how can we help you, it’s just been a great community. And it’s been really great because when I got diagnosed, I didn’t know anybody my age that had it, so it was a way to connect with other people across the world that are similar to me and they’re younger and are dealing with this disease.

Arthritis Foundation has been a really good resource for people like me who have RA, especially when I was younger, my mom made sure that I was really involved with the Arthritis Foundation because they had individuals who were part of it like me, who were kids who had RA and having and knowing other people my age who were dealing with the same things as me was really important to help me come to terms with the fact that this is my life, that this is something that I can’t change, that I’m going to have to deal with for the rest of my life. The best thing for me is to manage that as best I can and to have that support. I don’t really have any specific websites or apps that have helped me, but the organization and just that camaraderie support groups helps.

I use Google search a lot or WebMD to look at statistics of new medications that been newly approved from the FDA that, if there’s lots of testing results of it is with the placebos and the patient interaction, the side effects, and newer medications. Something that may alleviate more of the pain and symptoms that I feel. So I do a lot of research on older medications like herbal medicine, roots, teas and things to see if there’s something I can change in my diet, if there’s certain foods that cause this to flare up, are there certain foods that I can eat to help prevent it. My primary doctor is very good at not pushing too much medication, but will give me something to increase it little by little. My dermatologist is great to make adjustments to my psoriasis medications because it also works as a rheumatoid arthritis medicine, medication for the psoriatic arthritis, as well. So I used both of those. And if there’s a newer medication, I’ll say, “Well, what do you think about this?” I have a very good open communication with my doctor about what medications. And I look at a lot of different websites. I’ve looked at other patients with rheumatoid arthritis, if they’ve said, well, this or that helps, if they said CBD oil helps, then I would try it because I don’t know if it doesn’t work until I try it and I’m open to trying anything.

I would say the biggest resource I have found that’s helped me is support groups on Facebook. They are very, very helpful and of course, everybody on there has the disease and so they understand what each other’s going through and give very helpful advice.

I don’t really think I have any resources. I think, for the most part, my doctor is my resource. As far as online stuff, almost everything is done based on a specific drug or a drug company. I feel like, for me, my resource is myself and my doctor. I can find ways to do things easier that make my life easier. Gadgets for opening jars or being able to get something that I can’t reach or asking for help when I need something carried, because I can’t physically do that. Online or any of that, I just don’t don’t get involved in most of that stuff.

Well, my primary illness is sarcoidosis, which is classified as a rare disease. And as such, there’s not a whole lot of information available about it, but there is one organization, the Foundation for Sarcoidosis Research that is the world’s leading nonprofit that’s working towards a cure for the disease as well as support and resources for those afflicted by it. Their website is just chock full of information, guidance, help, tips, physician and facility referral and a list of knowledgeable doctors in clinics. So, that’s been a great help. In addition, there is an online community hosted by Inspire.com that is specific to my illness. And I actually am a mentor and moderator of the sarcoidosis forum. And there are a bunch of people out there that feel the same as I do. And while I don’t take pleasure out of others having the same pain I do, I do take a measure of solace that I am not alone and in fighting this disease and there’s others out there and we band together every day to lift each other up.

My favorite resources is The Rheumatoid Arthritis Warrior. It’s run by a woman named Kelly. I stumbled across it a couple of years ago and I found her to be very informative and compassionate and straightforward with information about rheumatoid disease and how to handle it. I’ve also used something for shoes, a resource for women who have arthritis whose feet are in bad shape and there’s a website called Barking Dogs. I use that to research what kind of shoes I could wear that would help me get through my day. So those are my two best resources that I can use. Both websites have been invaluable.

There are two apps, Creaky Joints and Pain Scale, which my rheumatology nurses thought was great, but I don’t think my rheumatologist has looked at, but it’s great for tracking symptoms and being able to have a clear picture of what was going on because you can print out what’s going on that month or what’s been going on since your last visit. And also the Creaky Joint line community has been really great because other people with autoimmune disorders like rheumatoid arthritis and lupus, and there’s a lot of support and information and understanding and they’ve been really helpful and really great.