Tag Archives: RAD

Koinonia — Community

Community:a group of people with a common characteristic or interest living together within a larger society : a body of persons of common and especially professional interests scattered through a larger society – from Merriam-Webster online dictionary.

Community, a word with many varied meanings. The residents of a certain town or village are referenced as living within a community. A group of professionals at large like doctors are referred to as being in the medical community. In it’s most general sense it simply means a collective group of individuals no matter how varied their interests. Yet the word community can mean so much more as well.

Our English word community comes from the Latin word communitatem which simply means fellowship or shared relations and feelings. But if we look at the Greek equivalent to the word community we find the word koinoniaKoinonia is a term used frequently in the New Testament to describe the relationship between the early followers of Jesus Christ. In it’s simplest definition it means sharing a common life. Recently, the word community has taken on a deeper meaning for me.

Most of you know that Kim was diagnosed in October of 2012 with rheumatoid disease (RD). Kim is an RN and works in the Ambulatory Care department at our local hospital. One of the jobs that she does is administer various shots, medications, and transfusions; drugs for rabies, cancer treatments, etc. Lately she has been handling some of the transfusions and treatments for other patients with RD. This has given her the opportunity to relate to them on a very personal level as she shares with them that she too has RD. Last fall she was taking care of a lady that was diagnosed with RD three years ago. The woman had not responded well to treatments and was seeing Kim for one of the more aggressive RD infusion treatments. When Kim told this woman that she too had RD the woman became quite emotional. Kim was the first person this lady had ever met who also had RD. For three years she had suffered silently with RD without ever talking to another person who had the disease. She had never interacted with anyone online and did not know about the large Rheum community and information available to her on the internet. Kim gladly shared with her some of the various options that were available to her.

For us, the Rheum community is extremely important. In late December of last year I wrote a blog post asking for help from the Rheum community as we faced some serious treatment roadblocks with Kim’s RD. The Rheum community responded by viewing that post over 600 times and providing dozens of comments with incredibly helpful information and encouragement. And this was when everything started to take on a new meaning for me. As we interact, email, read one another’s blogs, and encourage one another with funny Rheum tweets, we are building a real community. This isn’t a Latin word meaning of community that says we are merely sharing feelings. No, this is koinonia, a sharing of common life. Men and women, singles and married, Christians and atheists holding each other up as we travel the same road. 

And now we are asking for others to join the Rheum community. For those who do not have rheumatoid disease to come and share our common life, our koinonia. On February 2, 2013, we will participate in the first annual Rheumatoid Awareness Day. We are asking for you to join us as we raise awareness for rheumatoid disease. Through increased awareness we hope to fund further research, educate others, and dismiss the wrong perceptions that people have about rheumatoid disease. We want to stop rheumatoid disease from being so silent and invisible that patients suffer alone for three years. We want to work towards a cure and we need your help.

Official Press Release

How You Can Help

Why February 2, Groundhog Day?

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Filed under RD, Rheum

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