Tag Archives: RD

Netflix, Heat Patches, Family, and Friends

Hello blog. It’s good to see you again!

A new work schedule has kept me away from the keyboard, but an unscheduled day off, a rainy morning, and a blog carnival prompt has me writing.

About a month ago, Kelly asked the question on her blog, “How do you keep the disease from taking over?” It’s a great question and one that I thought of quite a bit when I first read her post. A gentle nudging tweet from her yesterday reminded me to write and participate in her latest blog carnival. So here are a few of the things (a non-inclusive list) that help Kim and our family deal with rheumatoid disease. How do we — our family — keep the disease from taking over?

First off, thank you, thank you, thank you, Netflix. I know it might seem funny, but it’s also very true. I don’t what this would be like for Kim without Netflix streaming. Kim is not a big reader and she doesn’t find a distraction from her pain from browsing the internet either. But streaming TV shows and movies on demand? That is extremely helpful! See there are days that come without warning where Kim literally does not have the energy to leave the bed. Sometimes those days run into multiple consecutive days and that is when Netflix is so helpful. I seriously can’t imagine dealing with RD without it.

Next is blankets, gloves, and Thermacare heat patches. Our kids have always been involved in sports. More specifically, outdoor sports. In Wisconsin. Which means that we can and have left for baseball games when it was 60 degrees outside only to finish the last inning with a temperature of 22. So we know we need to be prepared. We are not willing to let RD dictate to us whether Kim can watch the kids participate in sports or not. Therefore, the back of our van is loaded up with a chair that Kim can sit in for several hours (bleachers are out of the question without an excellent quality bleacher seat), about 6 blankets, gloves, and these lovely heat patches. thermacareKim places one of these heat patches across her shoulders when we know we will be sitting out in a cold game. They help to keep her warm which prevents her from tightening up her neck and shoulder muscles from the cold. That it turn helps to keep her pain levels lower.

Our family also helps us from letting the disease take over. Often, Kim’s RD has her in bed much more than she would like. This is not in any way easy for the woman who would prefer to be busy working, cleaning, and gardening 18 hours every day, but I am seeing the benefits of these forced moments of rest. Almost every night when it’s time for me to go to bed I have to kick one or two or all three of our teen-aged children out of our room. Daily, they lay next to her and talk about their lives and Kim gets to listen and communicate with them. What mother wouldn’t love to have time to talk with children without distractions and life’s busyness interfering? What a tremendous gift that has been given to her because of RD!

Lastly, our friends help in more ways than they realize. Not a week goes by without multiple people asking us how she is feeling. And then they tell us they are praying for us. Words cannot fully express what that means to us. Their concern for our family has done multiple things, but probably nothing that is more important than the binding of our hearts together with theirs through friendship. There is something unspeakably priceless that comes with knowing that someone cares so much for us that they regularly take time out of their day in order to pray for us. It’s one thing to see one’s own hurts and pain and to ask God for help. But to care so deeply for another that their suffering becomes more significant than your own needs speaks volumes. The Psalms tell us to “cast your cares on the Lord”, but our friends have made our cares their own and for that we are deeply grateful.

One other thing our friends do for us is that they give us hope. When we are frustrated by doctor’s visits and poor treatment from medical professionals, our friends are frustrated too. This gives me incredible hope. Why? Because our friends get it. They understand that there are huge issues with how the medical community currently “sees” patients with RD. They share in our disgust when a doctor tells Kim her pain is “subjective”. (More about that in a future post.) But how does our friends “getting it” give me hope? Simple. Because if they understand it, then others can too. And as we continue to educate, fight for awareness, and show people the realities about RD we move another step closer to a cure. Each new person that gains a better understanding of what RD really is helps us take one more step in that direction. And each step helps us all keep the disease from taking over.

This post was written for RA Warrior’s RA Will Not Win blog carnival. Please check out the other great posts written for this carnival at RA Will Not Win.

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Filed under Blessings, Blog Carnival, RD, Rheum

Losing

In December I wrote a lengthy post about Kim’s health and the impasse we had reached with her rheumatologist. We asked for help from the Rheum community and we got it. This is the follow up to that post.

First off, how is Kim doing? Well, she’s better than she was in December, but is still not as good as she has been and is not anywhere near where we would like her to be. We went against her doctor’s orders and continued her on the methotrexate and over the last few weeks we saw some improvement. We attribute this to the Humira and the methotrexate working together like they have in the past. However, we are still not seeing as much improvement as we would like.

We have made the decision to move forward with finding a new rheumatologist. He told us when we saw him in December that he “didn’t know what to do” with Kim’s Rheumatoid Disease (RD). Yes, that is a direct quote. No, that is not acceptable. After my post in December, he sent Kim an email to go over the MRI report that she had done on her hand. Kim’s MRI was negative. Based on the negative MRI and that — in his opinion — the disease was not active and showed no “visible swelling or outward manifestations” he wrote that his only conclusion is that Kim’s joint pain must be “stress, poor sleep, fibromyalgia, or osteoarthritis.” In other words, he was basically saying that Kim’s pain is all in her head. Again, that did not go over well.

But the point of this post is not for me to blast Kim’s doctor. Instead I would like to point out something that only became apparent to me in a conversation Kim and I had the other day. We were discussing moving on to a new rheumatologist and Kim — in reference to her old rheumatologist — said, “It’s too bad. He could have learned so much from having me as a patient.” Now she wasn’t saying that in any egotistical way as if she would be able to impart great amounts of rheumatology knowledge to him. No, she simply meant that he could have learned a tremendous amount simply by having her as a patient. We recognize that Kim has a more severe form of RD than others have. That for those who have a less severe form their treatment is easier to manage. But we also know through our interaction within the Rheum community that the severity of Kim’s RD is not uncommon at all. The fact is that there are many who have it worse than she does. Instead of seeing Kim as a “difficult” patient, we had hoped that he would recognize that for many people with RD Kim’s symptoms are downright ordinary. Unfortunately for him, he missed that.

Because of her rheumatologist’s indifference to her symptoms, his inability to listen, and his unwillingness to explore the full scope of her disease; and his unrealistic holding to textbook definitions and outright denial of real-life evidence of what RD actually looks like, he is the one who is losing out, not us. We will find a new doctor who will work with us and listen, but her old doctor missed an opportunity. A chance to learn what RD looks like in “real life”. An opportunity to be a doctor who recognizes that beyond the disease descriptions there are patients who know more than any textbook because we live with it every day. And that more importantly we are not simply patients, but we are people. If only he could have seen that we were not simply another name on a chart, but that we have real pains and real concerns and genuine fears about our tomorrows with RD. To step beyond the medical hubris and step into the lives of the patients and recognize that we deserve better, then he could have been truly great.

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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