Hope for Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Hope for Rheumatoid Arthritis

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Ghost stories and hopelessness

There is an old North American tale of friends sitting by the campfire. Telling ghost stories at twilight made them jumpy. They became anxious as a faint humming sound grew closer and louder. Screams of horror about bites of a wild beast turned to embarrassment when the campers realized they were only being swarmed by mosquitoes. Hoping to foil the mosquitoes, the friends put out their fire, huddling as complete darkness fell. Imagine their dismay when the mosquitoes came back with flashlights!

In case you didn’t guess, the second attack was fireflies!

Fading hope for Rheumatoid Arthritis

Hopefulness wouldn’t help with the itching, but it might help your nerves at times like that.

Here we sit, my friends, around the campfire. We’ve told some stories. We hear our share of humming. Most of us are scratching. Are you ever tempted to put out the campfire & huddle in the darkness?

Sometimes it seems like everything goes wrong at once. RA can bring a swarm of trouble. I’ve watched strong hopeful warriors be brought low by this disease. I’m no different.

Holding on when hope for Rheumatoid Arthritis (& underwear) is running low

Lots of things are running low. Roo runs out of underwear since I can’t get the laundry done. Don’t worry, we bought more. I’ve run out of hands to hold the phone with or fingers to type with.  Oh the elbows with the phone! There are no more parts of me left to help me stand up when my knees or my hips need help. I’ve run out of shoes I can get on. I’m thinking I’m also running out of options for treating this RA. I’m hoping not to run out of hope.

One of my very first blogs was about hope for Rheumatoid Arthritis. I realize how valuable it is. Noticing my hope tank running low, I remembered what I wrote: Hope is not just something you can have, it’s something you can do.

There’s this old song by Out of the Gray that says, “All I can hold on to is Your hold on me.” I used to tell my little ones to hold on tight when we crossed a busy street, but really – Do you think I would’ve ever let go of them? Those kids are teens now and we bought the new Tobymac album together this week. We found a familiar message in the song Hold On:

Wake up to the morning light
wipe away the lonely nights
let a brand new day wash over you,
Wanna see you smile again
show some love to your crazy friends
wipe your tears away
those days are through
If you move just a little bit closer
you can put your head on my shoulder
Yeah, yeah
So baby hold on
just another day or two
I can see the clouds are
moving faster now
and the sun is breaking through
If you can hold on, to the one that’s holding you
there is nothing that can
stop this crazy love
from breaking through
Wake up to the rising sun
thank the Lord for the
things He’s done
lift your eyes up to the
hope that’s ever true
Wanna see you smiling girl
you’re a light in this jaded world
wipe away those tears
this one’s for you
[Chorus]
And the stars are up there
shining for you
oh, the Father does adore you
His love will never change
And you and I
we were born to follow
the hope that will lead us to tomorrow
and no one can take it away
[Chorus]

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Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 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 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 fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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33 thoughts on “Hope for Rheumatoid Arthritis

  • June 18, 2010 at 7:57 am
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    Wow, Kelly, God is so amazing! Today I woke feeling that hopelessness-just plain tired of dealing, you know. Then you post this article and I am again reminded that my Heavenly Father hasn’t left me and hanging on to me and so there is hope. Thank you so much for your ministry. I pray you have a good day. I know is doesn’t help the pain go away but please know you have brought sunshine and hope back into my day. Thank you so much.

    Reply
    • June 18, 2010 at 8:03 am
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      Kristi, that is so awesome that God encouraged you & you took time to tell me! Passing on the courage. Here’s a funny: My eyes are failing fast. When I first read your comment, I saw the word misery where it says ministry. It was like it said: Thanks for sharing your misery. I laughed out loud. Have good day knowing even if you let go, He’s got you. :rainbow:

      Reply
  • June 18, 2010 at 9:40 am
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    Kelly, what a really really nice post. Thanks for reminding me that we can’t give up hope, even on the really bad days. You are the best and always find the right words.

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  • June 18, 2010 at 11:02 am
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    Thanks Kelly for the reminder. I can’t help but be reminded about your posting last summer about Robert E Lee’s mother and wife. Our lives are so much more different than theirs. Even the most seriously effected patients still enjoy the comfort of AC, and newly developed medicines. Hopefully someday, folks will look back even at our life time and ponder the changes and improvements over the years. Yes hope is a wonderful thing and keeps us going evey day!

    Reply
  • June 18, 2010 at 11:37 am
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    I LOVE, LOVE, LOVE TOBYMAC, I LISTEN TO HIS TONIGHT ALBUM ALL THE TIME, IT DOES GIVE ME HOPE, ALSO IF YOU WANT, THERE ARE 3 OTHER REALLY GOOD INSPIRATIONAL ALBUMS I LOVE, “KARI JOBE”–“2009”, “SANCTUS REAL”–“PEICES OF A REAL HEART”, “WONDER”–“AMONG THE THIRSTY”. THESE CD’S ARE GREAT CHRISTIAN CD’S! I LOVE THEM, LISTEN TO THEM EVERY DAY! hOPE EVERYONE HAS A GREAT WEEK AND SOFFT HUGS TO YOU!

    Reply
    • June 18, 2010 at 11:56 am
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      Thanks for the suggestions! I’m going to ck out the ones I don’t already have. Even my 5 yr old is a huge Tobymac fan! Toby is so creative.

      Reply
  • June 18, 2010 at 12:05 pm
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    My hopes are not always realized, but I always hope.

    Keep hoping Kelly and Warrior fans. :airplane:

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  • June 18, 2010 at 12:49 pm
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    I’m a little short on hope today. Last visit to doctor, the x-rays show erosion in my left hand so she is starting me on Enbrel. After confusing process of approving through my insurance, the package of shots arrived today. I’m scared. Not just about giving myself a shot, but about maybe being allergic, or of it not working and me being crippled.
    VBS is this week and I am the crafts director. It has been very hard to do the crafts each night and I’m worried I won’t be able to next year.
    Next week we fly out to Seattle area to visit my husbands’ family. They are all very active people that like to hike and do all kinds of outside stuff. This is my first visit since the RA. I’m so different from 2 years ago.
    Sorry, I guess I’m having a pitty party today. It upsets my husband for me to talk about this stuff so I try to put on a brave front with him. I know all of you understand and I just needed someone to talk to. Thank you.

    Reply
    • June 18, 2010 at 1:14 pm
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      Becky, I’m so glad you spoke up! Those fears are all familiar to us. I wish I could be there in person to reassure you. :heart: :heart:
      The medicine will probably be a great help to you. I personally am allergic to Enbrel and it still did not hurt me! It is the most common Biologic & very few people react badly to it.
      I know about the in-laws too. Can you find a post on this site w/ a bunch of comments from others who are experiencing the same as you and EMail it to them? Maybe even send them another one in a couple of days. That will prepare them some. People have told me that helps. If you need a suggestion of a post, I can help you find some.
      Becky, this does NOT sound like pity at all. These are all real issues that we are dealing with. Let me know how to help & I’ll be glad to do what I can.
      Are you taking methotrexate? That is one of the best ways to prevent your body from making antibodies against the Enbrel (gradually becoming “allergic” ) .

      Reply
      • June 19, 2010 at 8:05 am
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        Thank you Kelly. Yes, I do take methotrexate and diclofanac. I’m taking the shot this morning. That’s a good idea about sending the in-laws some of these posts on here. Thank you also for the songs. They really help.

        Reply
  • June 18, 2010 at 3:35 pm
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    The song lyrics say “you’re a light in this jaded world”. That is you, Kelly and the fellow RA warriors. Thanks for the encouraging and well-timed words. I don’t know how I would face each day without Christian music and your website. Today I am trying to make a decision about treating osteoporosis on top of the RA. That is another controversial decision. I feel the osteoporosis is a result of 12 years without a diagnosis and I pray my family physician will at least acknowledge that rather than blame other things when I meet with her. Thanks for all you do.

    Reply
    • June 18, 2010 at 4:08 pm
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      Kay, I’m sorry there’s one more thing. I have not begun that treatment either. My gp said he’d give me one year w/out it & that was last year. Do you think yours will not acknowledge RA did this to you because she was she should have helped you find a dx sooner? Listening to another Tobymac tune right now. Got you the link. That whole album is full of words of hope.

      Reply
      • June 18, 2010 at 5:28 pm
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        Thanks for the link-another great song. I had heard it but not to listen carefully to the lyrics. I don’t know if my gp thinks she let me down or still doesn’t believe there is such a thing as sero-negative. Given the opportunity I intend to ask her. When I told her how much MTX is helping me she asked if my husband thought I was doing better as if my word wasn’t enough. Just one of those things we deal with in being misunderstood. That is one of the many reasons I love your site-being understood.

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        • June 18, 2010 at 6:09 pm
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          Kay, shaking my head w/you as I know exactly what you mean. have a good weekend.

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  • June 19, 2010 at 11:40 pm
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    Hi Kelly
    It’s my first time posting a response on your site. This post is like God’s timing. I’m a fellow RAer and I go through most of what you and the others go through; today is one of my most challenging days and I am so grateful for your encouraging words. Please keep on doing what you do. There are so many persons you are touching the way most of us can’t. May God bless you always.

    Reply
    • June 20, 2010 at 12:47 am
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      Wow, thanks for responding Miriam. It was a really bad day and your words encourage me too. :yes:

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  • June 20, 2010 at 11:59 pm
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    Many times I run low on hope its your web site thats the encouragement for me. I understand about giving and giving till there isn’t much left, so what r u gonna do for a refill? Need help around the house? Or a shopper? Your right, medical science seems behind our medical need…again. Our bodies maybe losing this fight, but we can still out smart it. We can move forward, I’m sure people 20 years ago didn’t talk about RA like we do now on these web pages, its because of the work you have done, u created a tool for us to connect and its medically sound info. Connecting moves us forward. I know I may not be able to hang on another 20 years but my children and grandchildren will see a cure, we can hope for that! So look at what work u have done & where it will take all of us 20 years from now. Wow now I’m hyped! Thanks Kelly!

    Reply
    • June 21, 2010 at 11:35 am
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      I was so glad to read you message Virginia. I think I’ll print it out for days I need encouragement to keep going. Thank you. 🙂

      Reply
  • June 22, 2010 at 2:41 am
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    My hope tank has been running low the last few days. Thank you for this blog at the perfect time!! Listened to the song and have a new favorite artist on my christian list!!! Thank you Kelly for all you do!!!

    Reply
    • June 22, 2010 at 8:52 am
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      I’m sorry to hear it Jamie. I know you have a lot going on & can’t imagine it all. I’ve been listening to that album non stop – it does help some.

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  • October 24, 2010 at 5:01 pm
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    I think some days hope is all we have left, the days I lose hope is the days Ra is winning the war. I hope to never let Ra take that away from me. :pumpkin:

    Reply
  • October 24, 2010 at 6:07 pm
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    This summer I kept saying, winter will be better. It’s almost winter here and I must of realized last might that it won;t be better. I’m into year three with no relief Desperation just sets in and overwhelms me. This song came just in time. Thanks Kelly.

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    • October 24, 2010 at 8:20 pm
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      Rachel, those seasons / years of no change (except maybe worse) can really get to us eventually. It helps to know we aren’t alone. Listened to this song several times today myself. Hang in there.

      Reply
  • October 24, 2010 at 6:18 pm
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    Thank you for your post Kelly…I definitely short of hope today…some days I am positive and hopeful and other days despairing…Hopefully I will not have too many more days like this…My last visit to my Rheumy was a “There is no inflammation” kind of visit, I got a steroid shot in my hip but no change in my meds and was led to the waiting room door without even a decent exam…. Even though my CRP was abnormal for the first time he basically told me he didn’t see any active disease…I felt so shocked Kelly I was speechless. I was in so much pain this morning, the thought of waiting till December for a new Rheumy seemed overwhelming. Thanks for all you do… ~Susan~

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    • October 24, 2010 at 8:21 pm
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      Susan, I’m so sorry you had to deal w/ a lack of understanding. I hope the shot helps!

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  • October 24, 2010 at 10:16 pm
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    Nikki, I so agree. Those are the days that RA is winning: the days when my “hope” tank is running on empty. It’s so important to me to keep my hope replenished and it has been so helpful to have all the support, from my RAWarrior family, available on a constant basis.

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  • April 23, 2012 at 5:23 pm
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    THANK YOU!!! I really needed this HOPE today!!!

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  • April 23, 2012 at 5:34 pm
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    My Hope is very low at the moment i am so tired of trying to keep going as i live on my own and have know one to talk 2 , have my rheumy app 2 more . Have to go by public transport start at 7 am god knows what time i will get home at. This site is a life saver to me , also the 1 on face book. Thanks Kelly.
    You give us all hope .

    Reply
  • April 23, 2012 at 6:40 pm
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    Dearest Kelly, There are no words to tell you how much I needed to read this article today, and as I only discovered your website in Summer 2011, not even a year ago, I had not read your first blog on “Hope” from 2010 so I got to read that too! I was hospitalized last July/Aug after becoming dehydrated from 3 wks. of diarrhea, diagnosed with colitis per path reports from biopsies during colonoscopy. Have been in horrible flare of of the colitis for 2 wks., been on a 40mg. prednisone burst or 4 days now. Maybe tiny bit better, barely avoiding dehydration, thus ER. Been really down and running low on hope. Seems sometimes I (we) just can’t catch a break.

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  • April 23, 2012 at 9:21 pm
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    I could not tell you how much this post helped me today. I have been in a lot of pain but remembering my favorite old group “Out of the Grey” was so helpful to keeping me up. Nice to know someone else shares some of the same pain and music ! I try to sing with my hoarse voice those songs that remind me there is more to this life then pain and suffering. Somehow I will make it if I just keep hanging on.

    Reply
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