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.

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Comments

View Comments (5)
  • Mariah Z. Leach moderator
    4 years ago

    Hi Stephanie ~ As an RA mama myself I totally understand what you are going through (though my kiddos are a lot younger than yours). It can be so hard when our condition affects someone other than ourselves – especially our kids. I have a special place in my heart for the RA mamas out there, so please remember that you are not alone and we are here to support you!
    ~Mariah~

  • Samantha Searle
    4 years ago

    Hi,
    It’s incredibly frustrating,I fully understand what you’re saying! I remember one time I was trying and failing at trying to put my trainers on..many things have been seen flying around my house because of sheer frustration…
    Can you not buy veg and salad already chopped up? I know I do..everything,cheese..veg..I buy chopped apples,and drink my other portions of fruit..pineapple,orange etc..still stuck when peeling a banana though..
    None of the above does not mean in any way shape or form that you’ve failed as a mum,wife or human being..

  • Kellie
    4 years ago

    I am so sorry. I can’t yet imagine how horrible that must be. I have only had RA for 7 years and can still do most things, although I think I do some I shouldn’t. I live in fear of the day that I can’t make that salad. As a mom, I completely understand what you are talking about. I hope your new medication will help. Good luck to you.

  • Carolyn Haney
    4 years ago

    That is something that upsets me very much is not being able to cook for my husband and young son like I used to.My son is in first grade and I try to make his lunches fun and healthy but when my legs are aching and my right shoulder is aching and throbbing it’s so heartbreaking to tell him I can’t and have to see the disappointment on his face is
    enough to dissolve me to tears. He deserves better, But he takes it in stride and never complains. And I hate these diseases for robbing me of that joy,.

  • Stephanie Walsh author
    4 years ago

    I hear you, sweet ladies. We can just daily try our best. It’s taken me 6 years to really know my limits well, and it’s still hard. I love making my kids lunches, so it was just a whole new feeling to have a new limit, as you well know! Enjoy time with your dear families. 🙂 Stephanie

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