18 Responses to “Do You Love a Rheumatoid Arthritis Patient?”
Rheumatoid Arthritis Warrior
Bringing information & encouragement to fight RA
Welcome to RA Warrior!
Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Arthritis. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.
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Hi, Love ur site. I am starting a support group at our church here in Springfield Illinois. It will be Christian based. I could use some help getting started. I have a couple months to prepare for it. Could u help? I know u r busy and Im totally in awe of u and what u have done!! I am 52 yrs old and have had ( or should I say I have known)RA since 2004/2005.There are very few resources here for RA folks. Only a very few Dr”s here also that can treat it. I also have a friend thats Daughter just found out last yr that she has LUPUS..She is 15 yrs old. If u have any resources on this disease could u please send them to me so I can forward to her. She is having a very HARD time getting Dr”s here that will treat a child with this problem and the one they have found that does is very fickle with his treatment. Telling her one time that she does have it and then telling her she doesn’t!! Thus changing her meds all the time. Even when they r helping her with the pain etc…. She is desperate for help with this. Thanks so very much for ur time. GOD has given u an awesome calling to help others.I also have that calling, just need ur help getting started. Thanks so much…..Cindy Tomlin…If u need it my phone # is xxx-xxx-xxxx (edited out)
Hi Cindy,
What wonderful news. I’m working on some materials you could use for that.
For now, you could use some of the articles on this site for the newly diagnosed (click on the green flower where it says For the Newly Diagnosed on the sidebar). Also, the RA 101 articles on the top menu have a lot of info. You may quote this site as long as I am given credit for my own ideas.
If you cannot find something specific that you are looking for, you can email me at kelly @ rawarrior.com (without the spaces) and I’ll try to help you find it. Best of luck & blessings on your work. I’d love to hear how it goes.
Thank You so very much!! My family, while they understand that I hurt, seem to think that since I “seem to be having a good day, week etc” that I will want to, feel like or should/have to cook clean or what ever. It gets so frustrating sometimes. It is so hard to explain that while I might not be as stiff, or in as much pain as I was yesterday/last week I am still stiff and I still hurt. Usually I just go ahead and do whatever it is and suffer in silence just to avoid the “disgusted sighs etc”.
Sorry about the “disgusted sighs.”
Do you think you can get them to read something like this?
Thank you so very much for this post. I too try really hard to suffer in silence. I don’t want to be known as a downer, and I want to set a good example for my kids. I want them to know that you MUST fight through anything that is thrown your way. I also am not one to ask for help. My husband works in law enforcement, coaches soccer, and has another side job he does occasionally. So I feel that I need to pull my weight at home, which often means a lot of pain for me at the end of a day. I try so hard not to let my family know that I am hurting, but I catch myself saying “I am so tired” a lot! When I say that, it’s usually my muscles, my brain feels like it just wants to shut off and I am just hurting and done for the day! Yet there is still dinner to be prepared or a sporting event to attend! It’s so hard. Prayer gets me through a difficult day. I do not think my family fully understands what I go through. I am not sure they ever will understand. I am on my second biological drug, as the first one just stopped working it’s magic for me. This second one has never seemed to quite get me to where I feel I need to be. Wondering if one day I will run out of hope and new drugs to try.
God Bless!!
So glad I to have someone who understands, as this is getting harder with each coming year. I just celebrated my 46th birthday this month and am headed to the heart doctor on Friday. I want to be able to really celebrate a birthday, not dread them!! Okay….done whining, I feel better, now im putting on my happy face and going about this beautiful day that I have been gifted!!
Lisa,
My birthday is this month, too. RA has really changed the way I think about age & birthdays. When my birthday comes, I am so happy that I have made it one more year. Truly grateful for every day here to see my kids grow & love them.
Happy Birthday, Lisa
You truly are a RA Warrior………Thank you for addressing this issue with so much helpful information.
Thank you so much! I have just discovered your site and truly look forward to going back through all of your posts, and especially to sharing it with my family.
I’ve had this disease for about 10 years now, with two surgeries behind me (who knows how many more to come!) and have found the internet to be my saving grace. I’m newly venturing into the blogosphere myself and have already “met” some great people. Again, thank you for this site!!
Welcome Stephanie. Nice to meet you.
Kelly – I have been praying about how to communicate my limitations to those with whom I am intimate. Lately, on bad days, I let friends know I am going AWL (absent with leave) and that I will be in touch when I have more energy. With my kids I am trying to be more open about how I feel without being whiny or angry when they don’t get it, because I want them to know that living in honesty and acceptance is important. My husband wants to understand, I trust him in that, but it is hard for him to hear where I hurt.
The other night, as we were lying in bed, I did a full body scan – it is a practice I do from a book called Full Catastrophe Living which helps me to connect with where I am hurting – and I felt led to ask him to do it with me. So he lay there and let himself feel his body and told me the results of his scan. His stomach was a bit nervous. That was it! Then, he asked me to tell him the results of my scan.
Five minutes later (well maybe not but it felt like it) I was through telling him what I felt in my body check in. It was low key, a simple naming and there was total silence from him when I finished. “Is today a bad day?” he asked. “No, about typical for a good day,” I replied. “Thanks for having us do this,” he said. “It helps me to understand how you live.” I think it was a real turning point for us.
I think reading your blog helped me to have the courage to respond to my leading. Thanks for that!
Anj,
Thanks for sharing that. & What you said about honesty with your kids is important. It’s hard to share information that’s “negative” but we need to be able to be real, too.
Cindy, I’m in Springfield IL also! You are right, there aren’t many people, especially younger here, with RA nor the resources to be able to get the support we all need sometimes. I’ve been working with the Arthritis Foundation board here so I’d be more than happy to talk to you about it. Great idea!!!
Cool thats awesome . I had talked to them about the group I was wanting to get up last summer. But I also take care of my 3 yr old Granddaughter 3 days a week and between that and a few FLARES I have had plus illness just didnt get back with them. I know at that time they didnt have anyone here to start or keep up a support group. What I would like to get started is an autoimmune support group. Have Drs and others come in and speak when I can. I know lotsa folks (Children also) that have a variety of different diseases. I have been so slow about getting this started, Im ashamed. But I also know I cannot do this all alone. If you would be interested in helping please let me know. My goal is to get started in a group type setting in a month or so.Please let me know whare u stand on this. Its great that u live in town. I would love to meet with u some time. GOD BLESS….Cindy
Cindy, that would be great, I’d love to meet up with you also. feel free to send me an email. If you are on Facebook I’m there also. Don’t stress over it, there’s nothing to be ashamed for. We all know how it goes
. Beckyr2000@aol.com
Becky, If you decide later after you and Cindy have connected that you want your email deleted from this comment, just let me know. Not sure if it could cause you any spam.
I have to say i’m glad i’m stumbled onto your website…. I found it through a facebook group link & i have spent a good portion of my afternoon browsing… Learning what i can about RA… My boyfriend is yet to be diagnosed but we strongly believe he has RA based on his family history (dad & sister diagnosed) & his symptoms of pain in his hands & feet primarily… He’ll wake sometimes in the morning and he can’t get out of bed they hurt so bad~!! He works in a physically demanding job & it’s soo hard to see him hurt but yet haven nothing to do for him~! The blood test came up negative for the factor so we’re hoping to find a dr who will run more tests on him. It scares me that this could be something else but at the same time i truly believe RA is what he’ll ultimately be diagnosed with. I’m on the search now to find out why people get RA. Not knowing much about it still we are afraid our son will suffer the same pain….
Thank you again for your website…. great information~!!!
Melissa, I really hope he gets “good” news that it’s not RA. You are amazing to be doing this research for a loved one’s suffering.
Did you find the blood test posts? Use the Tags lists at the top of the page to bring up links to every post on that. Really, there is not one test for RA. Did you see the Do I have RA? on the top menu?