The Shifting Sand of Living with Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

The Shifting Sand of Living with Rheumatoid Arthritis

Living with Rheumatoid Arthritis  is constantly shifting sand

living with rheumatoid arthritisThe other day, I took my kids to the beach. Well, they kinda take me now, really. I just drive.

It’s always good for a perspective boost. Look out at that horizon and realize that your problems are small – and that the world is a beautiful gift to us. Maybe it even makes us more aware of a Creator who is powerful like the waves which can’t be controlled.

These are good things. But this time, it was something less subtle that spoke to me. It was the way the ground kept disappearing beneath my feet while I stood at the shore.

We were trying to scoop up handfuls of wet sand to find shells. The waves made it hard to stand up to begin with. But, on top of that, they kept carrying away the sand beneath my feet. Hey, wait! Where am I supposed to stand?

It’s a lot like living with Rheumatoid Arthritis

It keeps taking away the place where you are used to standing. And you are left with the holes. If you don’t do something immediately, you will fall right into that beautiful ocean. You have to actually pick up each foot and replace it on the new ground.

My four year old is still figuring this all out. So he does go down, of course. Onto his backside.

When Rheumatoid Arthritis takes away ground, we are left tottering until we find a new place to stand. We have to literally adjust. Life is like that for every one – the need to adjust. It’s just that with Rheumatoid Arthritis, it’s more like trying to stand on the shoreline: you have to adjust again as soon as you are stabilized.

So, you adjust… and adjust… and adjust… and adjust…

How long can you stand there on the shifting sand? After a while, it was too much. I was exhausted and gave up my spot to shell hunters with healthier knees. Of course, the Rheumatoid Arthritis will not do me the courtesy of letting me walk away. So, there has to be another remedy.

As RA continues to remove and change the landscape beneath us, we must find ways to adjust repeatedly. We learn that is our reality now. For survival, we adjust: We change our medications. We look for a new doctor. We replace the doorknobs. We learn to ask for help. We learn ways to treat a new symptom…

We adjust…and adjust… and adjust…

It’s never stagnant or dull. We are not stuck in the status quo. We are always on our toes—except for when we fall on our behinds.

At least there is a great view of the horizon from the shoreline.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

25 thoughts on “The Shifting Sand of Living with Rheumatoid Arthritis

  • June 5, 2009 at 8:35 pm
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    That was brilliant. Loved the metaphor with the shifting sand.

    And the photo is lovely, too. I miss the ocean…

    Reply
  • June 5, 2009 at 8:58 pm
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    Well said RA Warrior…we adjust for sure. I love this post.

    Reply
  • June 6, 2009 at 10:20 am
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    Lene,
    Coming from you, that means a lot. Thanks!

    Reply
  • June 6, 2009 at 10:23 am
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    Harmony,
    Thank you. All of us together – we shall be heard. ;D

    Reply
  • March 7, 2010 at 3:59 pm
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    Beautiful. This speaks volumes to me. You put into words exactly how I feel with this ever changing disease. Next time someone ask me about RA, I will refer them to this page.
    Thank you.
    Cindy Souza

    Reply
  • March 28, 2010 at 9:36 am
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    Kelly, once again, thank you for all your insight and your gift of sharing yourself with others. It is such a blessing and so refreshing to read anything you post. You are one phenomenal woman and I am amazed at your tenacity to keep on keeping on with such pain.
    Wishing for you good things,
    D

    Reply
    • March 28, 2010 at 1:41 pm
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      Denise, That’s so nice – folks will think that you are my sister or something… O:-)

      Honestly, thank you for taking time to comment. That does help me keep on.

      Reply
  • July 16, 2010 at 11:14 am
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    Thank you for taking ugly and turning it inside out. Your words of knowledge and inspiration are a blessing. I thank God for leading me to you. Mere words cannot express the impact you have made in the lives of others, because you share, because you care. Thank you

    Reply
    • July 16, 2010 at 11:21 am
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      Wow, thank you Robyn. What a nice way to start my day! :heart:

      Reply
  • July 31, 2010 at 10:52 am
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    I am 63 years old. I was diagnosed with RA on December 22, 2006. At the outset, I was put on prednisone [short term] and then began the methotrexate/enbrel regimen. On April 24, 2009 I was diagnosed with anal carcinoma. I received chemo and radiation treatment and have recently celebrated a year of being cancer free. SINCE methotrexate and enbrel suppress the immune system, it is my belief and that of my oncologist that these drugs did not cause the cancer but took away my body’s ability to fight the cancer cells. And we all have cancer in our bodies. Thanks to a strong immune system, good diet, exercise, overall healthy lifestyle.
    Now I am taking plaquenil and sulfasalazine. I took myself off the small dose of prednisone that my rheumatologist prescribed once I was finished with the cancer treatment. {During that period, my RA was gone due to the strong drugs they gave me to fight the cancer]. My husband have adopted a vegan diet, very healthy. I am now into my third day of an elimination diet..I want to find out if wheat or corn trigger my RA flares. My hands, right ankle, neck and left shoulder are the areas of pain, stiffness, and discomfort. My rheumatologist prescribed a gel called Voltaran which I occasionally rub on the sore areas. I even have a jar of emu cream as well. MY hope is that the diet changes will reduce inflamation and put the RA into remission. I am glad to be off the prednisone as it made me edgy, hungry, depressed [I think depressed] and caused my skin to become very thin. I also take flax seed oil daily. I am very very skeptical about the RA drugs because of their many serious side effects. I’m so glad to have this web site. I am definitely looking for hopeful, promising alternatives.

    Reply
    • July 31, 2010 at 2:22 pm
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      Hi Fran,
      Yes, that is what prednisone does to a lot of people. I hope you’ll do well enough to go without it. Good luck with your treatment / regimen.

      Reply
  • September 26, 2010 at 12:43 pm
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    Kelly,

    We just returned from our first ever family vacation (and my first real vacation with RA), so your analogy about the beach really speaks to me.

    My husband and I chose to take our 2-year-old daughter to Disney World. We opted for the convenience of a Disney resort (Coronado Springs) and got a great deal with the off-season package.

    I packed like any mom preparing for vacation (with a few exceptions… braces, extra pain meds… etc.) And, away we went. Here’s what I learned (and will add into my “adjustments” for vacationing next time):

    1. When you check in to the resort, ASK them for a room that’s closer to amenities (such as restaurants, bus stop, front desk). I made the mistake of not mentioning it and they gave us a room clear on the opposite side of the lagoon. After a few hours at the park walking around, there was it was darn near impossible to make it back to our room from the bus stop, let alone get all the way back to the main building to eat.

    2. Plan to use an assistive device at least one level higher than you typically use. For example, if you normally use a cane to get around, reserve a wheel chair at the park… use a wheel chair? maybe it’s a good idea to trade up for a few days for a scooter.

    I rate my RA on the mild-moderate side of things and typically can get enough rest between “adventures” — so a brace or two is usually enough for me. But this trip had a LOT of walking and not enough resting. I really wish I had taken a cane to help out!

    3. Be CAREFUL about the hotel pool. It was my daughter’s first time EVER in a pool, so I probably got a little carried away showing her that it’s OK to put your head under water. I blame that little activity (along with my not-so-hot immune system) for the flu bug that I brought home as my Disney souvenir.

    Lesson learned… no head under water and shower IMMEDIATELY after you get out of the pool.

    It was still a great vacation and I wouldn’t trade it… even with the RA.

    Reply
    • September 26, 2010 at 1:11 pm
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      Karla, Thanks for those fabulous tips! I’m going to link to your comment on the travel tips post. 😀
      I’m so glad you got to go to on a vacation. I wish I’d known you were at Disney. I went out there a couple weeks ago to meet another warrior-friend.

      Reply
    • February 18, 2014 at 11:47 pm
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      Karla,
      As a Disney nut, I have opted to keep my visits to Disneyland as part of my life and have gone to Walt Disney World a couple of times. Your tips are perfect – I have used them myself. When I booked the rooms at WDW, I made sure to tell them that while I wouldn’t really need a handicapped access room, one closer to the main building would help a lot. They were happy to help however they could.
      I am finding that recovering from my Disney breaks is taking a little longer than it used to. I will not give the trips up because pain or no pain, I love being there. I refuse to let happiness slip through my hands. 😉

      Reply
  • September 26, 2010 at 1:16 pm
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    Loved your analogy of the shifting sand and RA. Yes, it changes, sometimes by the hour, and we need to remember that there are improvements as well as worsenings. Also that compensation is the name of the game, and never say “can’t” till you’ve tried every possible alternative way to do something.

    Reply
  • June 10, 2011 at 2:43 pm
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    Kelly your post made me cry. You so eloquently describe life with rheumatoid arthritis. You hit the nail on the head. Thank you.

    Reply
  • August 9, 2013 at 4:42 am
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    hello,
    i am new to this site but it is 3 a.m. here and I need help. I am almost suicidal at this point. I am a single mother of 2 who has worked 2 jobs since I was 19 years old. I was diagnosed with R.A. 3 years ago. Just this past July I finally gave in and quit work at the drop of a hat. My doctors visit was as bad as a death sentence and if it wasn’t my pain was. I clearly wasn’t thinking with my head but with the pain. I have no job now so I have no income but have recently applied for welfare. I have also applied for SSDI. I was told that could take up to 90 days. I feel like a loser because I am sick and I have chosen to quit my job without any income backing us up. How could I do such a stupid thing. We are going to be homeless and without a car at the end of the month. Does anyone know of resource centers that can financially help me and my family while we are awaiting SSDI approval? I start infusions next month and so I need an apartment that has no stairs and s turn hooks for doorknobs. My RA is very “Severe” as my doctor would say. I can’t quit crying so I am sure the stress is not helping my RA. I am so lost and so scared and feel like such a failure that I have RA. Please help.

    Reply
    • August 9, 2013 at 4:48 pm
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      Rebecca, I don’t know where you live, but here n Fl the family and children services have lists of clinics, food banks etc.. that they give out. we have several local churches that offer help with utilities, food even prescriptions. my doctors office even offers a program for free or reduced billing. Ask, Ask, Ask, and do research online. With 2 kids you should qualify for Medicaid. We have a lab called Pro Lab, that gives low cost lab work to uninsured and underinsured. I’ve even applied at the local hospital for reduced cost. My situation is similar to yours, but have no kids at home. Last year when I realized that something was wrong, my body was failing me, I was hopeless, now I see light at the end of the tunnel. Please don’t let this horrible disease ruin you. Research what your community offers, forget pride, do what you must to get treatment to care for your kids. Check with your doctor and drug companies, they have programs, that are free.

      Reply
    • September 5, 2013 at 2:02 pm
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      Hi Rebecca, I just read you note and I know this is a bit late but, SSDI does have an emergency option. If you are homeless or in imminent danger of being homeless, they will fast track your application. It can sometimes take two weeks. Try it and also ask your MDs office if they know of any relief sites. You did the right thing, many of us push and push ourselves until we just hit a wall. It is so hard to say ” I can’t work like this.” And it is hard when you feel like you are letting the family down but, you aren’t, you are making sure you will be there for them. It is better to use what little energy you have on your children and not be drained totally by work. Please don’t beat yourself up, we do tend to not be nice to ourselves. Rest,treat yourself as you would your most loved friend and take care.

      Reply
  • August 9, 2013 at 4:55 pm
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    Kelly, Thanks once again, that was so well said. I am learning to adjust…and adjust….and adjust. I pray that friends and family around me have the love and patience to bear with me during this time. They too have had to adjust. Now if the price of shoes would go down as my ugly swollen feet struggle with the adjustments LOL

    Reply
  • February 5, 2014 at 7:49 am
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    This post was so accurately aligned to how I am feeling today! I walk my dogs on the beach and it is becoming increasingly difficult to do it on my own which makes me sad. I must dust the sand off and keep trying. who knows we may get a cure soon!

    Reply
  • April 18, 2014 at 8:59 pm
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    I have never read something so beautifully written and appropriate for my time. I have looked at your blog for awhile and decided it was time to take a look again. Myfirst year of treatment for RA has been a failure. I can no longer longer tolerate Meth, infusions of Remicade brought no relief and am in alot of pain. Adjustments are exhausting!

    Reply
  • April 18, 2014 at 11:32 pm
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    Just diagnosed this week after suffering for 20 years! I have been glued to this website since I found it. So much more informative and personal than the “medical only” articles but absolutely reliable and accurate.

    Reply
  • January 4, 2015 at 5:54 am
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    Reading Kelly’s list of things she’d like to be able to do made me decide to write down my fear and longing. Now that I’m retired I have been looking forward to traveling more. But the RA is getting worse. Not only is my walking ability clumsy and off balance, I’m exhausted after walking just a little ways and that I have to do w/my wheels. It’s a rollator, a walker w/4 wheels and a seat. Mine is red and my daughter made a red/black seat cover for it. I love it because it at least gets me mobile on level ground for a short distance. I have also developed familial tremors, mostly in my hands, but writing, carrying a plate or cup of coffee is a disaster in the making! I don’t whine about these drawbacks because all I have to do is thing of a wounded warrior and my self-pity vanishes. But I am wistful for the things I can no longer do and the trips I will probably never take. I have a cottage on a small lake in upstate New York. It was built in 1925 and has been my summer refuge since I was a child. But it is all stairs and I can no longer do that. I want to go to Italy w/my son and his children to fulfill a promise I made to my mother. She asked me to scatter some of her ashes on my fathers grave. He is buried in an American military cemetary in nettuno, Italy. My son keeps saying I’ll get stronger and will still be able to go, but I am sceptical. I promised my grandson a trip when he graduated high school. That was in june2013. He wants to go to Greece but we both know that’s a long shot now. Where’s that good fairy w/her magic wand?

    Reply

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