Category Archives: RAD

Breaking You — Music Mondays

Over the last year and a half or so I have fallen in love with the music of singer/songwriter Audrey Assad. I own both of her albums and listen to them often. Yet the other night I was struck in a new way by one of her songs that I was very familiar with. The song is called Breaking You and it is from her second album, Heart.

What struck me about it is that it is the perfect song for those who are living with RAD. I honestly don’t know how I’ve never made the connection before, but it resonates with me in a new way because of how closely it portrays the pain, emotional stress, and realities of those who live with invisible autoimmune diseases. For those of you who don’t know what that’s like, I hope you are able to empathize as you listen to the song. For those of you who do know, I hope you find comfort in this song. Audrey concludes the song beautifully. That our hope lies not in our health or in our situation, but rather in Christ alone. That one of the great promises for those who suffer is that Christ also suffered for us and knows what we are going through. But most importantly, that because He suffered He has provided a way for us to spend eternity with Him with no suffering!

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, (2 Corinthians 4:16-17 ESV)

You’ve been let down, it’s true
Your pain is so easy to see
You’re haunted by your history
And it feels like you’ve got no escape

Your life left you high and dry
You used to be sure of yourself
But then your whole world went to hell
And tomorrow looks just like today

So you lie on your bed and you 
Won’t let the morning come in
And you hide in your room, 
Feeling that fear and it’s killing you
Don’t you know that it’s killing me too?
‘Cause your heartbreak is breaking you

I miss the light in your eyes
The home that I’d found in your arms
Right now you don’t know who you are
But I won’t give up on you

But you lie on your bed and you 
Won’t let the morning come in
And you hide in your room, 
Feeling that fear and it’s killing you
Don’t you know that it’s killing me too?
‘Cause your heartbreak is breaking you

And you’ve lost your fire
And your flame’s gone out and you’re down on your knees
‘Cause your life is not what you thought it would be

Lift up your head
Help is on the way
And it won’t pass you by
You just got to reach out a hand
And lift up your eyes
Love is on the way
And it won’t pass you by
You just got to reach out your hands
And lift up your head
Because love is on His way
He won’t pass you by
You just got to reach out your hands 

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Filed under Blessings, God, Music, RAD, Rheum

Stepping Into The Unknown

Last Wednesday Kim and I went in to see her rheumatologist for her regular scheduled appointment. We brought our list. And now we need some help from our Rheum community.

2012-12-19 08.58.29

In October, Kim got a very bad case of the shingles and since then she has been on a downward spiral with her RAD. Because of the shingles, she had to stop taking her Humira for about 8 weeks. When she was able to go back on the Humira, she took two doses and then had a herpetic outbreak in her mouth which meant that she had to stop the Humira again. This time she stopped for a couple of weeks before she was able to go back on it. The results of course of her not being on the Humira is that she is doing significantly worse. However, while we see a noticeable difference when Kim is not on the Humira, the disease is still progressing even with all of her medications including her Humira. As Kelly stated in this post from last week, since Kim was diagnosed a little over a year ago I have watched her “be able to do less every month than the month before“. The last few months have been very rough on Kim and so we put together our list of concerns and questions as we went to the rheumatologist’s appointment.

In the last few months Kim has gone from having daily pain mostly in just her hands and her back to her now having constant pain in her hands, wrists, back, neck, knees, hips, and feet. She also has the occasional pain in her ankles and elbows. Her hand pain is so severe that simply writing a check will cause her hand to cramp up in pain for minutes after. The other night I was outside and she peeled a half dozen kiwis for the kids. Doing so causes her left pinkie finger to spasm and stick straight out as far left as it can. It also took her about 20 minutes to peel the kiwi, but she got it done! Her back pain has been incredible and has caused her to max out on all of her pain medications that she can take. Even with all of her medications, she is never free from pain. It is always there though it may be diminished slightly. Her hips and knees pain has gotten excruciating. Laying flat in bed and crossing her ankles places too much pressure on her hips and knees and has become impossible. Simply shaving her legs has become a painful and almost impossible task. She drove home last week and was unable to use the cruise control because of the road conditions. Twenty minutes of driving left her hobbling like an old lady because simply pressing on the gas pedal caused pain in her feet, knees, and hips. The base of her thumbs were still sore the following day from gripping the steering wheel. Also, as her joint pain and apparent disease activity has increased, her breathing has worsened which makes us wonder what is going on with her lung disease. These are just a few of the things we wanted to talk about at her appointment.

The rheumatologist looked at the sheet that we gave him for less then five seconds. He talked with us a little bit and then did his physical examination of Kim’s joints. When he was finished he concluded that she has no noticeable swelling. We both looked at him like he was crazy. Kim’s fingers are swollen, stiff, and every one of them is noticeably crooked, but in his examination he said that the joints didn’t feel “squishy” so he doesn’t think there is inflammation. Also, he said that since her SED rate was low that he doesn’t see her RAD as being very active. I pushed back because Kim has never had a SED rate higher than an eight even when — in his examinations — she was visibly swollen. He then said that he believed that she was in pain, but that he was confused since Kim didn’t “fit the textbooks” for rheumatoid arthritis. I managed to keep my cool. He also said, “When I saw you a few months ago you were in remission and now you’re worse then you were at your diagnosis a year ago.” Yes, she’s worse than she was a year ago. No, she has never been in remission. Not by the old standards and not by the new standards put out by the ACR last year.

We asked for an MRI of Kim’s hands and her back. He agreed to do the MRI of the hand, but he continues to think that the back pain is unrelated to her RAD. It very well may be, but the links between back involvement and RAD are many and he is choosing to ignore this issue. However, he did refer her to pain clinic and the doctor there will order an MRI of her back so Kim will still get what she needs.

The rheumatologist then went on to say that he doesn’t think the reason that Kim is doing poorly is completely related to her RAD. His theory is that since she was diagnosed last fall and it is now late fall/early winter that this is simply a seasonal thing. That she has some undiagnosed, unknown “pain syndrome” that flares in the fall. He admitted that he was completely puzzled and wasn’t sure what to do. His orders however were that Kim should stop taking her MTX completely “as it doesn’t seem to be doing anything, and the side effect risks are too great to stay on it.” He wants her to stay on the Humira even though she has had two infectious outbreaks (shingles, herpetic sores) that were likely caused by her Humira. He wants to see her again in two months after she has been to pain clinic and if she’s not improving or is worsening then he would suggest that she get a second rheumatologist opinion.

So here are our questions for the Rheum community;

  • Should she stop taking the MTX?
  • If she does stop taking it what affect will that likely have on her lung disease that is caused by her RAD? (We are waiting to hear back from her pulmonologist before she stops taking it.)
  • Should we be looking at another TNF inhibitor or another biologic since she has had two infections on the Humira?
  • Since Humira and MTX work best taken together, why stop the MTX and not the Humira?
  • Any suggestions on how to further approach discussing back pain and neck pain with a rheumatologist?
  • Kim’s constant tendon cramping in her feet and hands and the numbness in her toes, RAD or something else?

We would appreciate any feedback. As always, we are extremely grateful for the love, support, and prayers from our family and our friends.

Update: Here is the follow up to this post. Losing

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Filed under Humira, Questions, RAD

Thank You and The Winners

How do you start to say thank you when your heart is overwhelmed with gratitude? We set a goal of raising $1,500 for the Rheumatoid Patient Foundation and we didn’t just make our goal, we far exceeded it by raising a total of $1,700!!!

Therefore . . . . .

  • To family, friends, Rheum-mates, and strangers I don’t even know who donated . . .
  • To those who shared our Wish on Facebook . . .
  • To those who Tweeted and re-Tweeted our wish again and again . . .
  • To those who took the time to link to our wish in a blog post . . .
  • To those who came along side us and promoted and supported this Wish as if it was yours . . .

. . . . . a huge, genuine, heartfelt Thank You!!!

Before we get to the winners, I want to look at some of the numbers behind our Wish.

  • 38 total donors.
  • 16 messages of love and encouragement left on our Wish page. I couldn’t keep track of similar messages on Twitter and Facebook.
  • This blog post was viewed 276 times in the last 7 days!
  • The same blog post was shared on Facebook 88 times and on Twitter 46 times in the last week!
  • The same post was viewed in 8 different countries around the world.
  • $1,700 raised for the Rheumatoid Patient Foundation!

Lastly, by far the hardest part about doing this Wish was the self-promotion. I loath asking people for stuff that benefits me or something for me personally. That was hard. I didn’t like bombarding my Facebook and Twitter feeds with requests of “give” and “share”. I know many of you feel the same way. So thank you for allowing us to “blow up” the feeds over the last few weeks and thank you for taking the time to share it on your own feeds even if you felt uncomfortable doing it.

Let’s talk about the prizes. Below are the names of the winners. For the boxes, the first name chosen will get first choice, second name gets second choice, etc. I will be contacting all winners privately. Should a prize go unclaimed or if I cannot reach a prize winner, I will select another winner and they will move to the bottom of the list. I have set a 48 hour time limit for the winners to contact me about claiming their prize. Same rules will apply for the kitchen gift set.

And now without further ado, the winner’s list . . . drum roll please.

The winners of the boxes are:

  • Brex Wollin Jr.
  • Janet Graham
  • Sarah Fitch

Two of the first three winners did not claim their prizes so I picked two new winners.

The winner of the kitchen gift set is:

  • Sandy Schelthelm

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Filed under Contest, Cooking, RAD