The Day I Couldn't Make My Daughter a Salad
It was early Monday morning, and the request was simple. "Mom, instead of a sandwich today, can you make me a salad?" My 18 year old daughter would only be here a few more short months before heading to college, so I am cherishing every moment. But, I could not make her a salad. I couldn't cut up the veggies she wanted. I asked instead if she could buy one at school, cringing at the idea of how gross those must be, when I had lots of fresh produce. Of course she obliged, but after she left, my tears flowed. My fingers are worse than they've ever felt. My knuckles have never experienced this level of pain. I have "officially" failed Humira and now Enbrel, and am going to try Orencia. I got Humira induced pustular psoriasis, so I'm leary of biologics, but I'm complex and don't have a lot of choices. Later that day, I'm sitting in carpool, waiting to get my son in tenth grade. I'm looking through the Orencia booklet, all the new patient material. I'm waiting on insurance, so I have not yet started it. I notice a note at the bottom that says actors are used to portray the people in the ads, not actual users of the medication. I sat there and actually laughed, out loud. Yes, LOL. The rugged man in his flannel shirt in the kitchen....the woman in perfect makeup and matching clothes curled up with a book in her cute chair...I don't know about other patients with moderate to severe RA, but this is not a picture of what I look like daily. It would be much more effective for me if I opened their pamphlet and saw a woman wrapped up in her quilt crying, holding her wrists...or a woman propped up in bed icing her legs because of her pain, wearing yoga pants or even pajamas (gasp!) because I think it would be refreshing. That's what moderate to severe RA looks like to me. That's what I do nearly every day. What about you? How do you cope? How do you look? Why don't these companies use real people? I am forever puzzled, but not losing hope. I will let my laugher carry me on, it truly is the best medicine.
Right now, what RA tips would most be helpful for you?