Johnson & Johnson RA Warrior YouTube Video
Inside story of a new YouTube video about RA Warrior
A few weeks ago, a Johnson & Johnson video team visited our house. See my sons spoofing with the big video camera? The things that captivate teenagers, right?
Anyway, it was hard to explain to the Johnson & Johnson folks why it was difficult to have visitors or cameras in my house (or yard) after six and a half years of un-pausing RA. I didn’t bother explaining why I felt so awkward, but just focused on the message for the 5 hours they were here.
However, I have a feeling many of you will understand how I felt. I was grateful that the kids worked hard to vacuum away the cobwebs, but most things are just not the way you would find them if I got even a little break from the RA. I like to think I’d paint my front door and hang a new wreath the very first day… but that should probably come after a day of running around at the beach.
What was tough about the J&J RA Warrior YouTube video
Would you humor me and let me share about just one part? In my back yard, near the swing set, a large green and white contraption makes an appearance (at minute 1:45). Do you know what that is? Every year for Christmas, I would make gifts. This is a homemade tomato tower that I made several years ago out of PVC and canvas. I bought a power saw and a special blade to cut the PVC and included those as another part of the gift to my husband. The fabric is thick outdoor upholstery canvas so I had to buy an attachment for my sewing machine to work with it. Florida summers are too hot for tomatoes, but winters are great. And it’s best if you can keep the tomatoes away from the ground where the sand is full of nematodes. (Smaller versions of a tomato tower can be bought on lots of websites now.)
It worked great to grow yummy tomatoes upside down, but after several years, the tomato tower is barely a shadow of its former wonderment. And to strangers who see the RA Warrior video on the Johnson & Johnson YouTube site in the future, it just looks like a random piece of garbage behind a house.
I know I’m not the only one – that many people with RA don’t have guests over very often because they aren’t able to make things “right.” It’s part of how people with RA can get cut off socially because it’s so hard to go out and even harder to have others in. Only my dearest friends visit me anymore. And now I hope that includes all of you.
Recommended reading
- Men and Rheumatoid Arthritis: Video PSA
- Video Blog: Two Essentials with a Rheumatoid Arthritis Diagnosis
- Mayo Clinic Video Interview: Patients at ACR Scientific Meeting
- Video: Rheumatoid Patient Foundation Gives RA Patients a Voice
Hi Kelly,
Wonderful video with lots of information. I just Love the website and RA Warrior, I direct lots of people there for information on Rheumatoid.
Not been around much as I’ve been doing so much at home I often don’t have the energy left to do much on the laptop. Our PC is another things that has gone due to the Rheumatoid. Along with my garden chickens. But we all need to keep fighting!!
Thank you so much for all you do.
Jakki, in Sherwood Forest England.
The worst for me is that I still think I can do those things. Our house needs to be painted, and I find myself telling my husband “of course we can paint the house ourselves, I painted my old house all by myself and even built scaffolds out of ladders and boards!” But the reality will be that if we do start this out, my husband will bear the brunt of all the work, and the little that I do to help will make me pay.
Oh thank you thank you thank you. My husband just said to me “honey maybe we need to hire a maid. You just can’t keep up anymore. “. Well I cried, of course. I try. I really do. But I look around, ashamed of what used to make me proud. So thank you for showing that it’s not just me. It may seem small to some people, but knowing you aren’t alone… Oh my gosh. It’s wonderful to know. It’s comforting to be amongst others with a lot of the same troubles.
Thanks!
I so understand how you feel about your home. I used to be a perfectionist inside and out. I could do just about anything. Now I watch the show “Hoarders” just to make myself feel better! If I have a good day and do cleaning or yardwork, I pay for it the next several days w/ extreme pain everywhere. I continue praying for a cure, so we can all have our old lives back!
Trust me, Princess McAwesome, you WILL get visited, bigtime, anytime I’m in the area.
And trust me, I’m way past you in “not ready for prime time visitors” in MY house. 🙂
You’re my hero. Keep it up.
Oh dear Kelly you always make it easier for me to understand that I am not the only one who has pretty much lost my old life. I once layed a block patio in my yard , wheelbarrowing loads of sand and blocks and knowing the aches and pains were from good hard work. Taking pride in my very clean home, and hanging my laundry out before going to work in the morning. Now there are too many days that I look at the dust and feel helpless or try to do a little and just get disgusted cause working through the pain only make everything worse. But I have faith that the Lord wants me right here at this place and time, and I should be grateful for the good days. ( that are few and far between). Thank you dear for doing what you do. You have become a trusted friend to me and i can truly appreciate everyday because of you.
Great video! It was enlightening to see you going through your daily life. My response to med was very good. When I have a “flare” like I am now, I begin to worry that I won’t be able to continue working as a jeweler. I don’t suffer with pain everyday, as you do. It was inspirational to see you carry on and to see your kids take such good care of you.
Kelly,
We really appreciate your participation and hope we did all we could to make you feel comfortable. It was a learning experience for us too, and I’m very happy that you’re sharing this with your community.
Rob
jnjhealth
I don’t feel like I’m the only one with this problem now. Thank You!
I am so glad to read and know that someone (and there seem to be many more) feels as I do. It is so hard to not be able to get that cobweb out of that high corner…and not be able to get the cat toys out from under the couch!
And I know exactly how Eliza feels. We finally hired someone to paint our house. With me not able and my husband too busy (even tho retired!), I knew the only way to get it done would be to hire it out.
Thank you for this website.
Kelly, there’s something about you and your candid sincerity that is so comforting to us warriors. I got choked up reading this piece (and for the record, I didn’t notice the tomato tower when you first posted the vid, but I’ll go back to see, tee hee!) I used to be Superwoman, and now if I do some laundry or cook dinner, my sweet husband calls me a dynamo…he means well, but seriously? Am I that sedentary that a mere household chore brings such gratitude? I love him for his undying support, but yes, we are a shadow of what we used to be physically, however, we know oh so much more about life, which makes us a gem to our loved ones. Kelly, thanks for being our gem!
thank you Linda. That is well said. And makes me feel better too.
BRAVO KELLY!!! Standing ‘O’ for doing such a wonderful job on this video showing a glimpse into life with RAD!
After almost 3 years I too have learned what I can and can’t do…or I pay for it! I struggle with this many times a day, after all, 3 years ago I was riding mid-level Dressage, training a young horse, gardening, canning, giving talks to garden clubs/etc about herbs, entertaining big time (like pig roasts for 150 ppl)…well, you all know…
I’m learning to be happy just being able to groom my horses and maybe walk around on top of one (with help from hubby to groom and tack up), to gardening with LOTS of help cause I cannot squat or kneel down anymore, and entertaining? Well, only very good friends who understand and help and VERY CASUAL!
Your video should be made as required watching for all (sort of like everyone who is testing for a drivers license should have to drive with a trailer..but thats another pet peeve of mine..LOL) Thank you SO MUCH for all you do, for opening your home and life for others to see what this invisable disease does to us. And please come and visit ME any time you are in Virginia:)
You are so gifted in giving encouragement to others! Even if your stucco days are behind you, you are Ms. Remarkably Awesome Superwoman. God bless you for helping so many. Loved getting a glimpse of all of you!! You are all my heroes.
Kelly is our hero. For everyone who suffers from RA she speaks out! Thank you Johnson and Johnson for a wonderful, informative video about her. And KELLY…your home is beautiful and you should never apologize for what you are unable to do thanks to this mean disease. You are amazing, and what you do is helping thousands of other RA patients. Keep up the great work!
IT really seems you were born to be the adovcate that you are. I’m guessing one you never dreamed of or wanted to be. but I’m so gratetful for all you do Kelly. This site is like an oasis for me. I totaly relate to having people in your home. It’s a great bone of contention for me. I had a suprise visit from the town inspector recently and was mortified. I just kept telling myself there has to be houses worse than mine that he’s been in. But I must say, your home is gorgeous and looks spotless. DO you have help besides your children to clean your home? DId your children just auotmaticaly start to help in the home? Or did you sit down and tell them you needed their help and give a chore list? My mistake as a mother was to do everything for my kids all the time. I was a stay at home mom and loved doing it. Now, they look at me when I ask someone to do the dishes likeI just told a joke or insulted them. So there they sit till I feel good enough to do them or do them in pain. And I won’t ask my husband to clean because he is working him self to death. Up at 4am and home if we’re lucky by 7pm. My blue collar hunk. I hate to punish my kids because I have this damn disease. I have to get angry to get them moving and I hate it. SO, was there a meeting, if you will, with your children on this subject? BTW you look so pretty in the video!
My home is exactly the same: filled with life, love, and lots of dust bunnies! I have a rule that when you come visit me, you get welcomed and loved but not a clean home. It drives some of my neat-freak friends and family nuts but it is all I can do to keep up with the other stuff that I actually enjoy in life rather than keeping a cleaner home. My husband does the vacuuming, and if that means he doesn’t pull out the couch, or get the baseboards and cobwebs, so be it. I’d rather have an extra hour of activity with my son than a spotless home. Thanks for having us in to your nest:) RA is a blessing to me! It has really allowed me to cut to the chase, and discover what is really important to me. I thank RA everyday, because what the heck else can I do?
thanks Venya. And your answer about how RA has “blessed” you will fit perfectly into a fun little excercise I have planned on the blog next too!
Wonderful video, Kelly! It was really nice to visit you and your family. And everything looked fine (but then I call my diningroom table a “horizontal filing area”…)
Kelly, all I can say is that your dust bunnies should go on having fun uninterrupted because you have a bigger job to do, and it is much more important and far reaching than wiping dust away! You are an RAD advocate, and your website and info have boosted the knowledge and spirits of so many in need of what you put together. So, just keep on doing what you’re doing so effectively! I remember reading something somewhere about a mom saying that she wants her kids to remember the smiles they had with her, not the amount of dust she removed from their home! Someone else I know said other neighbors wouldn’t let their kids play on their lush, green grass, and so the kids all went elsewhere where the other mom said, “I ‘m raising kids, not green grass!” Words of wisdom for all!
Well done, Vi! Reminds me of the lines of the old poem by Ruth Hamilton about the birth of a 5th child: “quiet down cobwebs. dust go to sleep. I’m rocking my baby and babies don’t keep.”
Amen!!
What a wonderful video! I was going to point out bits I really loved, but realize I can’t, the ENTIRE thing was the best!
My kids help me just like yours help you. I think our children will grow up to be empathetic and understanding. Many kids think their parents are invincible, but our kids know how to help us be the best parents we can be by helping out.
awww, thank you!! Yes, that will be the best part of the silver lining of rheum disease for my kids. They are more sensitive to others and know about never giving up.
Oh my gosh! I used to be Martha Steward,Suzy home-maker and HGTV make-over queen all in one. Now I’m embarrassed to have people over. I thought maybe it was just me…but I CAN”T do it all anymore as much as I would like to. When RA first started, I felt like a part of me had been cut out of my personhood. I can hardly hold a paint brush for longer than a few minutes. Forget dusting the intake vents with the vacuum. Not gonna happen!
Oh do I know how you feel! It’s OK. We’re survivors! That’s what counts…well. that’s what I tell myself anyway…
Glad to know I’m not alone! Will have to find other things to take pride in – like being a good listener. 🙂
Hi Kelly,
Wishing you continued success with Rheumatoid Arthritis Warrior and in your effort to raise awareness about the reality of living with RA. It is quite apparent the difference that your blog has made over the years in serving to connect, educate and inspire so many people.
Very best,
Brian
Brian Kenney
Global Immunology & Biotechnology
Pharmaceutical Communication & Public Affairs
Janssen Global Services, LLC
Kelly I hope you realize how much you and this blog impact others with RAD. I can’t imagine not having this blog two years ago when I was diagnosed. Thanks to you and the others on here, I quickly realized I was not alone even in the really odd stuff that went on during flares. There are so many stages of dealing with a chronic disease. This blog helps to shorten that cycle and get on with the business of living with it far more than any doctor can. So much more could be said but I will just say a simple thank you.
The most important thing I felt that I had to do before foot surgery was tidy up the whole house. My wonderful friends promised to visit and those dust bunnies must have gone from your house to my house.
Now someone is on the way and my husband actually reorganized the furniture. It’s just like you said Kelly. It never looks “right” and I have resolved to ignore it. So if y’all come to Toronto come on over.
5 hours is a long time to give up. Great your kids helped
Annette
Kelly, thanks so much for inviting us all into your home! great video.
I so know what you mean about having people over, though. I often ask friends to give me a few days advance notice before a visit so I can clean up. They always say it will be fine, that I do not need to do anything special….but they have no idea, how much is neglected when almost every cleaning chore is difficult and causes a flare of whatever joints I have used. Whether they truly would not notice or care, I do. I often suggest dinner at a restaurant to avoid this, but ideally it is nice to share your home with others. And by the way, your home looks lovely.
Johnson and Johnson just “stopped by”?
Kelly, Thanks for sharing – although I think your house looks just fine! Good in fact! I think your kids must pitch in a lot – just guessing. Mine on the other hand had reached such a state that not only was I ashamed to have anyone over, I couldn’t stand to live in it! I was using all of my energy to hold down my job and take care of my Mom’s needs and there just wasn’t anything left for my house. I finally hired someone this spring to do all my weeding and mulching and hired a cleaning lady! I need to feel comfortable in my own home! It’s a stretch on my budget but it’s important to me. I know how you feel.
I’m in the very beginning of what I know is AR,( still waiting to see rhuemy),After thininng out half of my Raspberry patch yesterday had to take the whole afternoon to recover from pain in hip,back,hand,wrist, and arch of feet. I can’t imagaine what’s to come.
My wife (Michelle) was diagnosed with RA last year and I found you when we figured out what was going on with her. I would like to say thank you for all the info you have in your web site and all the answers I found. Almost every night I look at your site and when I saw you talk, the things you said really touched my heart and wanted to say thank you for all the help you have given me on knowing how to handle my emotions and things I need to know about RA. I wish Michelle could meet you.
Take care and thank you again.
To answer the question. I think your web site is the most informative site in the world and seeing your video really puts a personal touch as I have a family with very young girls. Seeing you makes me feel it is not the end of the world and I hope and pray the medicine she is taking controls the RA internally. Time will tell and your comments will help me push through this.
This made me cry, Kelly. For you. For me. For all of us. I could have written this (without the camera crew, of course. I seldom comment, but I’m so grateful for you and this community. It’s here that I’m understood. Thank you.