You’re Not Lost and Michael Bublé Video
“You are not alone.”
I don’t think I can put into words what I want to say. Fortunately, this song Lost sung by Michael Bublé already did.
God is good and things come at the right time, like this song that I listened to all weekend. And like the way “the light comes pouring through many of you” in this community. What a difference it has made to me and many others to know “you are not alone.”
“It can tear your soul apart.”
Pain can tear us apart. But that’s not the worst part. It’s seeing what happens as a result.
The pain is invisible. So it’s underestimated. Usually undertreated. It leaves people feeling like they are alone since “nobody knows.” Some things tearing at my soul the last few days:
- I’ve heard from people whose spouses mock them for their pain. If you have a supportive spouse or family, just imagine your life without that. Imagine if the relationship were destructive instead.
- A mother of a little one with JRA says teachers don’t understand about how holding a pencil hurts. And how being in constant pain affects her. Several parents have told me their kids live with the same constant pain I feel.
- In the rheum chat yesterday, a patient said that a pain management doctor is not accessible in her healthcare system because she has inflammatory arthritis. Pain management is not available with that diagnosis. Disease treatment itself is supposed to be sufficient. Doctors I’ve met act as if that were the case. They don’t know.
“We’ll get lost together. Until the light comes pouring through.”
Together, we have the opposite. Somebody does know. When we have one another, it’s like someone else has walked limped in our shoes. We’re not lost.
Like all the different people in the video who were alone in their pain until they wandered into the hallway, we might wander onto Google or Facebook. Social media is like that hallway – only online. Coming into the hallway, we are no longer alone. “You are not alone. And I am there with you. And we’ll get lost together. Until the light comes pouring through.”
I need to dedicate this blog to Amanda who showed me this video and my dear friend Barb who introduced me to Michael Bublé and to my dear friend Leslie who helps me so much by standing by me, trying to understand all that has happened to her friend who got RA.
Note:
- Link to the transcript from the rheum chat on Twitter yesterday.
- Have you subscribed to our YouTube channel yet? Watching our videos improves their search rank!
Recommended reading:
- Prednisone Side Effects
- Rheumatoid Arthritis Doctors’ Interviews
- Traveling with Chronic Illness/RA Part 2: 20 Helpful Tips
Excerpts from Lost
‘Cause you are not alone
I’m always there with you
And we’ll get lost together
Until the light comes pouring through
It’s when you feel like you’re done
And the darkness has won
Babe, you’re not lost
When your world’s crashing down
And you can’t bear the cross
I said, babe, you’re not lost
Life can show no mercy
It can tear your soul apart
It can make you feel like you’ve gone crazy but you’re not
Things have seemed to change…
‘Cause you are not alone
And I am there with you
And we’ll get lost together
Until the light comes pouring through
It’s when you feel like you’re done
And the darkness has won
Babe, you’re not lost
And the world’s crashing down
And you cannot bear the cross
I said, baby, you’re not lost
Thanks Kelly,
Beautiful!
Kelly ur gonna make me cry so early in the morning! lol I do feel alone…so alone..except when im on your site! Thanks for that by the way! I feel like im with my sisters when im here and they all know without a word being said…im so gratefull..to have this! God Bless You!
Thanks for the reminder that God is good and that I am not alone. I really had a hard time dealing with that this past weekend. I hope you have a wonderful week and I pray that your pain is less. Love ya so much for all the hard work and encouragement you give.
Kristi
Thank you very much Kelly, I am blessed with a very supportive spouse. However my disease has affected her immensely…she is depressed, and anxious for the days ahead. We are fighting these battles together though, & have done so for the last 33 years..I can’t imagine it any other way. My prayers and thoughts are with those that would mock any disease. I look forward to our Sunday “hallway gatherings”, and am proud to support the #rheum community. Thanks again!
Love it. Thanks for sharing, Kelly.
Thanks Kelly. I feel so blessed to have all of you!
I didn’t watch the video yet, but wanted to comment that the pain clinic near me won’t treat RA and fibro either. Rheumy (current one) won’t give narcotics, says if you’re in pain, you’re not in control. Yet she checks me out, says labs are normal and I’m “stable”. Welllllll, WTH about my pain????? I’m so frazzled – sick of docs not caring…. 🙁
Marie, the pain doc I see for my back doesn’t want to hear about RA either. Wrong! Stable? the labs are stable – not the patient. Big difference.
I’m crying but in a good way. Hugs to everyone today who feels alone in their pain and in dealing with this disease. We aren’t. Ever.
Kelly, I am a RA warrior in Japan. I started my blog and please visit.
http://thitomi.wordpress.com/2010/12/08/my-rheumatoid-arthritis/
I want to exchange imformation about RA. I use ACTEMRA.
Do I need to get a permission to use link of ACTEMURA?
You may use any link from my site as long as the link and author’s name stays intact. Congratulations on your blog.
Kelly,
Once again,you hit the nail on the head about pain. Pain is a lonely phenomenon. Not that we don’t communicate our pain, sometimes we can, sometimes we can’t and sometimes we are tired of trying. I even get tired of hearing myself say it!
People around me know that I have something that keeps me from doing activities, they never really listened to begin with, probably because they heard “arthritis” and figured out they already knew the problem, since so many people have arthritis.
Today I was given a beautiful gift, at first I was mad, my friend gave me a book on DRINKING WATER AS A CURE FOR MY PROBLEMS!!!! I am sure most of us have had people tell us the list of quick fix natural cures, I have heard a lifetimes worth of them. However, through the day I started thinking about this person, the fact that she thought of ME when reading about water, the grand purifier water, she wanted to share her new found knowledge with me. For that very reason I am blessed,it was a gift, blessed with a friend who thinks about me, thinks about the issues I face and cares. Hers to my friend who cares and gave me a book about water, cheers!
Now comes the prayer, God, please make water purify my body as it purifies my soul.
They all mean well, people don’t understand much about thise disease, as well as half of us don’t understand about this nasty disease. Thank you Kelly, you are someone I look up to. An amazing woman!
Janette
What a beautiful song. I have a loving and supportive spouse and have just been diagnosed in the past 2 years. I feel so guilty about how much our lives have changed because of this disease. I try to stay positive but it is difficult. This brightened my day. Thank you so much.
You make me want to go play it Betty. But I cry every time I do. ♥
Thank you for tweeting this link. In the week since I’ve joined I have felt so much support and just seeing that there are others that do/feel/struggle with the same issues as I do has just opened my heart and truly eased this burden I’ve been silently carrying for so long. Thank you.
I am all alone. The only emotional support I had in my life (my mother) told me I am exhausting and that I obsess over my illnesses. How do you explain to someone that it’s not an obsession but just your body constantly reminding you how screwed up it is? I don’t know what to do.
Leslie, I’m sorry your mom is tired of your RA. I’ll be you’re even more tired of it. I know we all wish we could find the back door to get away from this disease – even for a few minutes. You’re probably doing your best to stay positive, but it’s good to get it off your chest now and then with those who get it, too.
I hope you have a good doc and he/she can guide you in how to deal with your mother and others who are insensitive and rude to you. It helps to learn how to set limits on people who are inconsiderate and hurtful. Sometimes it begins with telling them how it feels to have them say these things and to not even take the time to understand the issues your body has. Don’t let them diminish your feelings of worth. I will say a pray for you right now.
Alice
Thank for helping me to not feel so alone… my husband is great to me and I am very blessed. A there are a few songs that help me through painful moments… Mercy Me “Hurt and the Healer” and Laura Storys “Blessings”. Thanks for letting me share 🙂
I love Michael Buble’s singing. What a great song. At one time or another I think everyone has felt alone. I am blessed with an online group that shares their experience with this disease with me. It has taught me about the disease and helps me live with the ups and downs of it. It has brought me to this site. Wonderful work. Keep it up, and, thanks! Alice
I have on Methotrexate for two months, and late October I came down with some flu-like virus (despite having had a flu shot) that has resulted with Pneumonia and a round antibiotics; I’m still sick, not over it. I have NEVER been this sick and for so long. This has caused me much concern re. continuing the Methotrexate. Two days ago I resumed taking 1.25 mg prednisone.