Wednesday, September 23, 2015

Life with RA: Like a Bowl of Jelly Bellies

“For everything there is a season … a time to cry and a time to laugh, a time to grieve and a time to dance.” – Ecclesiastes 3:1, 4

I’ll be honest. I had no intention of writing this post. It is day three of #RABlog Week and the prompt is “Explain Your RA.”

It’s not that I don’t want to tell you what it’s like to have rheumatoid arthritis. It’s that it varies so much with everyone, I’ve hesitated to focus on my particular case without adding the same type of disclaimer you see on weight loss program ads: “Results not typical. Actual experience will vary.”

Oh yeah, and the other thing. RA isn’t my whole life. I have a job, a husband and a daughter, and this week, I have a million deadlines. I didn’t want to write today, because I needed to get back to those priorities. But then it hit. What was supposed to be my “high priority” day began this morning with a mini-migraine and an RA flare. So since I’m just sitting on my couch, waiting for my body to cooperate and feel better so that I can get to “work” work, I may as well go ahead and do this.

Read back to my first blog entry in September 2014 and you’ll see how it began. Then pick up again in April 2015, and you’ll read about what it’s been like at its worst, in the aftermath of having shoulder surgery. Both times in my life are when I really didn’t know that RA was the problem. I just hurt and didn’t know why. Those were milestones in my life with RA: First, accepting that I had the disease; and second, accepting that I needed real treatment for it.

Both times were difficult, because they were scary. Research rheumatoid disease, and you’ll find photos of severely deformed hands, stories of people in crippling pain, and drug descriptions that make you seriously wonder if they’re worth the risk, since they all seem to come with warnings about “serious infections” and cancer. I can honestly say that coming to terms with having RA has been one of the most frightening experiences of my life. But it’s also been one of the most faith building.

The truth is, living with RA (for me) is like closing your eyes, putting your hand in a bowl of Jelly Belly jelly beans, picking one out at random, and popping it in your mouth. As anyone who has tried that particular brand of jelly beans will understand, I’m using it as my example for a reason. This isn’t your ordinary brand of jelly beans. You’re not taking your pick of lemon, orange and cherry. Nope. Jelly Belly makes over 50 flavors, from enticing Tangerine to the more unusual Buttered Popcorn. Recently, they introduced a new line that includes Barf, Canned Dog Food, and Stinky Socks. On any given day with RA, you just don't know what you'll get: delicious or disgusting.

Three months ago, prior to getting on my DMARD (Disease Modifying Anti Rheumatic Drug) Plaquenil (which only comes with a warning about potential eye damage), I couldn’t hang up clothes in my closet without searing pain in my shoulder and my knee swelled up so bad that I couldn’t walk across the room.

Last weekend, I went kayaking.

Yesterday, in amongst a full work day, I ran errands, did grocery shopping, brought snacks for my daughter’s Girl Scouts troop, and even ran on a treadmill (first time in six months – yay!).

But then here we are this morning, and I woke up with my fingers stiff and swollen, my head hurting, and a familiar ache in my elbow joints. As my body “warms up” over the next couple of hours, I’ll begin feeling better. But I know that I better take it easy and manage my stress, or the days ahead will be worse. This is a minor flare and I want to keep it that way.

If there’s one thing I can tell you about living with RA, it’s what I can’t live without: God, my family and my community.

Knowing that I have unconditional love from my heavenly Father, even on days when I can’t seem to do anything of earthly value due to my illness, is critical to my wellbeing. He is the source of my spiritual healing and my hope for physical healing as well.

Having that same type of love and support from my family makes the world of difference too. When I get sweet hugs from my daughter and my husband understands when I’m having a rough time - helping out or giving me grace for things left undone – I find the strength to carry on, with a sense of gratitude that makes me want to give more when I’m able.

Last but not least, community is there to remind me that I’m not in this alone. Those who achieve much inspire me to keep pushing through, while those struggling inspire me to write with messages of hope and an encouraging word. My fellow bloggers may share their medical insights, or simply remind me that they too are living this mixed bag of burdens and blessings.

If you struggle with RA or another life altering disease, I hope my story will help you know you’re not alone. If you are healthy, then perhaps this will give you a little insight into others in your life with “invisible illnesses” like RA. For more articles on RA and finding faith in the midst of pain, visit the Spring Sight home page. God bless!

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Life with RA: Like a Bowl of Jelly Bellies originally appeared on Spring Sight blog, by Linda W. Perkins. It is one of a series of posts specifically about Rheumatoid Arthritis, as part of #RABlog Week. 

Get even more encouragement by following me on FacebookPinterest, and Twitter. Many of Spring Sight's posts can also be found each week on #EncourageMeLinkup (Mondays) #IntentionalTuesday #RaRaLinkUp (Tuesdays), and  Testimony Tuesday.


  1. I would like to add a bit to your title. "Life is like a bowl of Bertie Botts Jelly Bellies." You know the Harry Potter kind? With booger and vomit flavors?

    1. Yep, those are definitely included in the mix (see the paragraph on why I specifically chose Jelly Belly jellybeans for reference). But even with all the yucky ones, I try and stay grateful for the good days (or perhaps just moments) that come along. Wishing you gentle hugs and blessings, Nicole!

  2. Oh my goodness vomit flavors? Yuck (of course I have diabetes so jelly beans are not really my taste) LOL

    Linda, what a remarkable blog. I believe RA is the most unpredictable thing I know and I have what is sometimes termed brittle diabetes (meaning blood sugar moves rapidly without rhyme or reason). In reality RA may move a little slower, but I have insulin to correct blood sugar issues. We have nothing comparable as it relates to RA.


    1. Thank you, Rick, and yes, you're right about RA being both unpredictable and uncontrollable. I think that is what's so frustrating about it and other autoimmune disorders. It makes social planning nearly impossible! A solid reason to live one day (or moment) at a time and to savor the good ones as they come! Blessings, Rick, and thanks again for creating #RABlog Week!

  3. As you know, my friend, I've been dealing with RA for nearly 16 years now. The meds lead to cancer and the loss of my left kidney but I'm still here! My mantra has been, "I hurt when I do things and I hurt when I don't do things so I may as well get off my butt and live!" It takes a lot of strength and mental "dueling" to get moving some days but having three kids has definitely been motivation because I don't ever want to miss out on time with them. Nor do I want them to ever feel short-changed so they motivate me often. I also know that MANY others in this world suffer greater than I and that they would HAPPILY trade their affliction for my own. At least RA sufferers do have relatively effective meds to alieve most of our aches and pains. Life with RA can still be beautiful, fulfilling, active, and happy. Faith, family, and mental fortitude have served me well and I know you are blessed with the same.

    1. Great perspective, Leslie. We are blessed to still be able to do so much, despite the hard days. And you're right, sometimes pushing myself to do what I don't feel like can push me into doing something that brings joy to both me and my family. It's worth the effort! Thanks for sharing, sweet friend.