RA and the OMGs

This is hard.

You’ve started a new biologic. A “miracle drug,” as it’s sometimes referred to. It’s been about six weeks since you started it—not long enough for most biologics to show their effects, beneficial or otherwise, but in some patients, this one has “worked” this early.

For you, not so much. In fact, at this moment, you’re in real pain. Your hands have serious headaches—no! —migraines. Your right ankle stabs and screeches as if you sprained it—you didn’t—with each step you take. A moment ago, as you sat down on the loo—such a normal, everyday movement—your left hip gave you a vicious jab deep down in your groin. And now, as you sit watching evening television, that hip is grumbling softly at you in a low monotone that could turn into a screech at any moment.

Or not. Because that’s how the rheuma-dragon rolls.

Be calm, you tell yourself. None of this means that the new biologic isn’t working, or that it won’t work, for that matter. It doesn’t mean that the other drugs you take for your rheumatoid disease aren’t working, either. If you weren’t taking them—and the new one, too—maybe you’d feel a whole lot worse than you do right now. And man, you don’t want that.

But … well. You don’t want to feel this way, either. You’re in pain. Your rheumatologist tells you the best way to treat that pain is to treat the underlying disease that’s causing it. Well, duh. That’s what you’re doing.

But you’re just so freaking tired of it. You want to be strong and keep on “fighting” for yourself and perhaps for others (your family? Friends? Co-workers or colleagues? Teammates?) because, well, what choice do you have, really? You can’t just quit.

For many of us who cope with RD, this is one of those really, really tough moments: the ones where, for a while, all you can feel is bleak. You start each new treatment with a fresh surge of hope, dredged up from some deep, seemingly inexhaustible supply. Maybe, you think, this will be the treatment that’ll finally help you fight that malicious old dragon back into his cave. Maybe this will be the one that’ll help you brick up the entrance to the cave so he can’t get out—maybe forever! Maybe this is the “miracle” drug that will give you your old life back.

But for now, it just isn’t working. Your hands, shoulder, ankle and maybe even your hip all say so, and you have no choice but to listen.

So now what? How do you cope with the disappointment again? How do you avoid the darkness that looms in your future? And that’s just the physical darkness—the pain, the fatigue, the fevers, the co-morbidities that tend to crop up over time with RD. What about that other darkness, the one that settles down over your soul like a dense fog at the realization that there seems to be no effective treatment for you? No relief?

I was there, recently.

Now, I think of myself as an optimist. I’m always looking for the sunny side, for the little kernel of good deep down in the bad. My glass of silly clichés is half-full, not half-empty. But there are times when all my inner glad-handling just doesn’t shake off the sads or the fears or the OMG-what-ifs.

And that’s when I force myself to listen to all that good advice there is out there about how to deal with The Sads. Instead of staying indoors, I make myself go outside. I make myself go breathe some fresh air. Maybe I grab Mom and we go to a favorite store for a little shopping therapy, the kind where actually buying anything isn’t the point. It’s just a way to get outside of myself for a while, a trek with nothing more in mind than to ooh-and-ahhh at the pretty things. Then it’s lunch at a cheerful, busy restaurant where there are people talking, laughing, and smiling, because that stuff is contagious.

The other day, she had an early doctor’s appointment, so afterward we went to breakfast at an inexpensive diner-type restaurant. The woman who waited on us was absolutely the smilingest, nicest, laughing-est and most pleasant person I’ve encountered in well, years. Hers was a hard job. She’s not rolling in dough. And yet her attitude and her manner were simply stellar. That woman made my day—maybe even my month. The year’s not over yet, but she may have made that for me, too. I can still see her sparkling eyes and huge smile in my mind’s eye, and she makes me want to pass that kindness on.

Another thing I try when The Hopelessness hits? I take a look at my diet. Like far too many of my fellow Americans, I tend to eat way too much junk food. I absolutely love crunchy, salty, cheesy snacks. I prefer sandwiches to salads. And since my hands, wrists, ankles, and feet are usually giving me the what-for, spending time in the kitchen preparing and cooking nutritious meals often gets put aside for frozen dinners or foods that I can prepare quickly from boxes and cans.

Yep, it’s a good excuse, but it is still an excuse. I can do better. I know it because I have. Cooking a chicken breast on my small, indoor grill takes almost no time and cleans up easily. I can get brown rice in microwaveable packets. Salads come in bags these days, and there’s almost nothing simpler than steaming veggies. You can even buy them in steaming bags for the microwave, now. I’ve learned how to use seasonings to make simple foods taste sublime. It’s only a matter of doing it.

And when I’m eating right—staying away from processed foods, making veggies the main part of my meals, sticking to whole grains and lean meats and healthy fats—I really do feel better, both physically and mentally. They’re tightly intertwined, after all.

Finally, I look at my sleep patterns. Pain can sure keep me from sleeping. Worry about pain and about my future cause insomnia. If I drink too much coffee, or eat too late in the evening, I probably won’t sleep well. So, I do what I can to change those things when The Miseries come. Sometimes I can’t do much about my pain, but I can control how I react to it. Instead of worrying about it, I can choose to simply feel it, doing all I can to stay in the here and now in my mind, rather than way out in a future that hasn’t even happened yet—and which I have no control over, anyway. I’ll forego that last cup of coffee after dinner and have a cup of decaffeinated green tea, instead. I’ll eat my evening meal as early as I can—and refuse to snack later. I know from experience that these things can help me sleep better when it’s time to turn in.

Finally, we can ask for help when life with RD just gets us down. We can talk to our primary care physicians or our rheumatologists. We can ask for different or better medications, or referrals to other specialists who might be able to help. We can ask for help from a mental health specialist, too. Sometimes, we simply need a non-judgmental, detached someone to talk to, someone whose actual job is to listen and try to help.

My new “miracle” drug still isn’t working, but my outlook is better right now. Some of that is just because I’m the kind of person who doesn’t stay down long. But a lot of it is because I took steps to shake myself out of it, too. I didn’t like it much, and I tried to talk myself out of it. But hey—it worked.

What do you do to help yourself cope when life gets tough? I’d love to hear from you in comments below.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (18)
  • Connie Rifenburg
    2 years ago

    OMG! I just left a similar post on another topic from Kelly Mack. Your words are so much better than the way mine came out, but we are saying the same thing basically. I’ve lost my “umph”

    So, I just hadn’t read far enough to find this topic when I bled out my woes. Now I can read what others do and maybe, just maybe, find that smile that has been lost for a while.

    thanks for writing this post Wren. I’m not so alone as I was.

    Connie

  • Wren moderator author
    2 years ago

    Hi, Connie!
    I’m delighted that this post helped you rediscover your smile and not feel so alone. RD is tough to cope with, and it’s good to know that others understand and empathize. I know it helps me, all the time.
    Thank YOU for taking the time to comment, here and on Kelly’s article. I so appreciate it, and hope to hear from you again soon. 🙂

  • Richard Faust moderator
    2 years ago

    Hi Connie, so glad that Wren’s article resonated with you. I actually just finished writing a reply to your message to Kelly. Never feel bad about coming here to vent/”bleed out your woes.” If you can’t come to the community for that then we would be failing. Like I said in the previous comment, the “RA Burnout” is completely understandable. Great to see that you a feeling a little better today. Best, Richard (RheumatoidArthritis.net Team)

    P.S. I’ll make sure Kelly sees your post.

  • cannonsplash
    2 years ago

    Wren, this is so Me. Been on a new biologic since September. It just doesn’t seem to be working but has worked for so many of my docs patients. He swears it’s going to work. I gotta give it more time and in the meantime I live my silent agony and try to go thru my days with a smile on my face. Thanks for helping me feel like I’m not alone.

  • suann
    2 years ago

    Hang in to see if the bio drugs work, when I first started the bio drugs it was 3 to 4 months before I seen a difference, I did the bio meds for several years before they stopped working, don’t give up, not all body’s are the same and nothing works in a timely manner as you have seen.. I can’t wait to hear your story a few months from now..

  • Wren moderator author
    2 years ago

    Hi, cannonsplash,
    I’m so glad you stopped by and read my post, and even more glad you commented. It’s hard to be alone with the pain of RD. I do so understand how you’re feeling about the new biologic: hopeful it will work, and fearful that it won’t. I do believe that staying positive and hopeful helps, though, to cope with the pain and chase away the fears. Being mindful helps.
    Thank you so much for your comment. I hope your new biologic will work just as well as your doctor thinks it will. Stop by again and let me know how you’re doing, OK? 🙂

  • Richard Faust moderator
    2 years ago

    Hi cannonsplash. Thought you might be interested in this article on switching RA medications: https://rheumatoidarthritis.net/living/switching-ra-medicines-dont-wait-long-try-many/.

    Sometimes it can take a while for medication to work, but if not – there are more options available and more coming. Best to you and keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    2 years ago

    Thank you for sharing cannonsplash. Glad this resonated with you and reminded you that you are not alone in this. Sending positive thoughts your way for some relief soon. We appreciate you being part of our community! Kelly, Rheumatoidarthritis.net Team Member

  • scd2287
    2 years ago

    Hi Wren!
    Thanks for another upbeat post! I’m another glass half full person ;-).

    I’mean newish to RA but have struggled with chronic lung disease for years and the RA is rapidly advancing.

    I have always gone to music and media (I love mysteries and fantasy) when I’m feeling overwhelmed or struggling to get one foot in front of the other. A little escapism.

    Other than that, it is as you do, I get out as much as I can. Go to the YMCA, take my dogs for a run, play with my son.

    I’m able to work for now, and I find that going to work and taking care of other people’s problems makes me forget my own.

  • Wren moderator author
    2 years ago

    Hey, scd2287! I’m delighted to meet another optimist! It sounds like you’ve got some great ways to push your RD pain into the background, or at least keep it on the periphery of your life instead of front and center, where it wants to be. Good for you!
    Here’s hoping that your RD will soon be under control and your pain levels lowered. Thank you so much for stopping in and commenting. I’d love to hear from you again! 🙂

  • Richard Faust moderator
    2 years ago

    Hi scd2287. Glad you are finding ways to stay busy and upbeat. Thought you might be interested in this article from one of our contributors about how RA may change your life, but doesn’t have to change the ability to be happy: https://rheumatoidarthritis.net/living/happiness-everything/. Best, Richard (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    2 years ago

    Glad to hear that you are finding ways to cope and live life scd2287. You are not alone here! Thank you for sharing your positive outlook and being part of our community! Kelly, Rheumatoidarthritis.net Team Member

  • kylongarmer
    2 years ago

    Thank you so much Wren. All I can say is I needed to read this today as I was so afraid my infusions weren’t working anymore but a medrol pack has gotten me over the hump. I paint to take my mind away. I’ve put grips around my brushes to help my hands.

  • Wren moderator author
    2 years ago

    Hi, 1j40k62!
    Mind if I just call you “Friend?” I’m so glad this post made you feel a bit better today! And I’m glad the Medrol pack helped you get through the hardest part of the latest flare. That stuff is miraculous, too, isn’t it?
    And you’re a fellow artist! Bravo! I also use grips to fatten the handles of my brushes and pencils. too–they make them much easier and less painful to grasp.
    Living with this disease takes practice and, I’ve found, daily doses of courage. Thank you so much for taking the time to share yours with all of us! 😀

  • Cassandra Bird
    2 years ago

    Hey Wren, I’ll be sharing all your posts as I find them so on the mark 🙂 I’m so sorry you are struggling with the meds. That initial hope and positive determination that maybe this will be the drug that gives us our lives back soon starts waning as we realise it probably won’t. I’ve found my journey with RA has definitely been a process, at first we just want to get treated and get back to living but as the years move on and the disease progresses and the list of failed medication grows, eventually we have to grieve the loss of the past us and embrace a new future living with RA. I also like to write when I’m struggling emotionally. I also like making homemade bath and body products, the usage helps with my own suffering and I feel confident about the ingredients not being toxic, took a while to find out the things I’m now able to do, I haven’t gone out socially for three years, except medical appointments. I should try to get out more but I’m currently on no RA drugs at all. I’m starting methotrexate (I must be cRAzy cos I’m allergic to it and got fibrosis of the lungs last time!) Next Monday so that I can get funding to start rituximab infusion, it’s my last option, so I’m holding onto hope for it, I don’t have any other choice. I thought I wouldn’t be willing to take any of the drugs anymore as I’ve got a long list of problems with each try, but leaving the rheumadragon untamed for the last five months has totally destroyed that resolve. I pray it starts helping you soon hun! The story of the waitress was lovely, you know when I was healthy enough to work and mix in the world a lot of people would say that about me, I always came with smiles laughter and lots of love for everyone. RA has made me a very different person and the majority of people quit being interested as soon as I changed, being lonely didn’t help. I try to be the old me and not complain so much now. It’s funny cos then people think I’m doing fine and not in pain at all!lol at least they ask though xx

  • Wren moderator author
    2 years ago

    Hi, Cassandra Bird!
    It’s so nice to hear from someone so kind and empathetic! I’m glad you find my posts helpful, and I hope that you’ll keep reading other authors throughout the site. Everyone has a terrific attitude and each writer offers a unique perspective about RD and how they cope with it.
    I hope the MTX is kind to you and that you’ll be able to start your biologic soon. Keep hoping! These drugs really are miraculaous. And do keep looking for the positive gifts each day. Your smile and your laughter are precious gifts all by themselves, even when they’re tempered by RD pain and fatigue.
    Thank you so much for stopping by and for taking time out of your day to comment. I appreciate it so much, and I’m looking forward to hearing from you again soon. Let me know how you’re doing, OK? 🙂

  • Lawrence 'rick' Phillips
    2 years ago

    Wren, I suspect you would do pretty much what I do. I write. It looks like you did as well.

    I believe that tests out to devised that help us foretell the likely future of treatment interventions. I visited with z company last year that has a test for three biologic medications that does foretell if one of the three are likely to work. While it works well, the test is not widely adopted as yet. I believe that in addition to making new medications, each manufacturer should be obligated to produce such a test. Yeah, I know it will never happen, but darn if I were in the insurance industry I would require the test before I approved one of the three medications. It seems like a natural extension of fail first.

    (after all, I suspect insurance companies hate paying for new medications that are likely to fail, no matter the expense).

  • Wren moderator author
    2 years ago

    Hi, Lawrence “rick” Phillips,
    Yep, us writers have a method to our madness. RD causing pain that’s getting in the way? Sit down at the keyboard and “fall into the page.” It helps me not only to distract myself from pain, but also to express my thoughts and, sometimes, my frustrations.
    I love the concept of a test to discover which of several drugs will work for each individual patient. Like you, I think insurance companies would love it, too. No more wasted drugs, wasted time, or–holybegonias!–wasted money. And no more hopeless disappointment for patients when the miracle drug fails to perform as promised.
    It’s always great to hear from you, Rick! Thanks for taking the time to comment. 🙂

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