Community

Proverbs 27:17 – As iron sharpens iron, so one person sharpens another.

I’ve been thinking about how important it is to have a strong community when dealing with rheumatoid arthritis. What kinds (notice the plural) of community are needed for those with RA? I attempt to outline a few in this post.

Family and Friends. I’ve heard that people who don’t have family or friends tend to be sicker and live fewer years. This applies to everyone but maybe even more so to those with a chronic illness. Those with whom you are closest can love and care for you unconditionally, see you on a regular basis, and can better understand your condition. And remember, RA also affects the lives of those closest to you. They oftentimes are required to pick up the slack.

The medical communityis critical. Medical staff may include physicians (generalists, rheumatologists, orthopedic surgeons, etc), nurses, physical therapists, lab techs, and others. Those with RA who keep regular doctor appointments and have long term treatment tend to do better and live longer. Sometimes it takes a while to establish strong relationships with medical staff. Finding a good doctor is a struggle for some. But persistence and research can pay off.

Social Networks/Support Groups. While family, friends, and medical professionals are important, only those with RA can fully understand the issues from all angles – they live it. I encourage all with RA to find networks of others with RA who can relate and communicate. Those networks may be local and/or virtual. The Arthritis Foundation offers links to local support networks and activities. While face-to-face interaction is important, it may not be possible for everyone considering the geographic location. The internet provides an excellent venue in a virtual environment. There are many social networks devoted to RA. But I’ve learned that you must be careful when choosing a network. Chronic illness can sometimes bring cynicism and negative attitudes in people. I find that many postings about treatments and medicines are from people with negative experiences. The most positive and supportive network I’ve found thus far is MyRACentral.  Whatever kind of network you find, it is critical to stay connected and fully participate.

So, get out there and get connected!

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Healing

According to Wikipedia ,”Healing, assessed physically, is the process by which the cells in the body regenerate and repair to reduce the size of a damaged or necrotic area.”

I see three sources of healing…medicine, diet/nutrition, and spiritual.

There are days when I can feel dramatically different. On those good days, I still suffer from joint pain and stiffness but it is much less than during bad flares. I attribute most of this to Enbrel because I always feel much better the day I inject the medicine. I can literally feel the healing. In addition to my own case, clinical evidence over 15 plus years shows that Enbrel positively impacts about 70% of RA sufferers.

While I believe that it’s important, it’s much harder to pinpoint the effects of diet and nutrition. I try to be active (this is harder lately), eat well and I supplement with a variety of things such as fish oil, flax seed, and vitamins E and D. I’m sure that these help because they are linked to inflammation reduction and joint health. But I can be quite leery of various claims all over the internet about natural healing of RA. My scientific background causes me to demand clinical evidence. Seattle, where I live, is home to a famous naturopathic training center and clinic. I have yet to go there because of the lack of evidence. But I always leave my options open.

I do believe in spiritual healing for two primary reasons. I read about it in the bible and I’ve seen it happen. There’s also some clinical evidence over the past 20 or so years. I avoid hyped versions of “healing ministries” such as name and claim it, dramatized TV preachers, and the such. But I can cite several instances throughout my life when I’ve seen people be healed through prayer either immediately or over time (e.g. stroke, diabetes, sarcoma tumor). I don’t get too worked up over it or make it the center of my beliefs. Not everyone prayed for gets healed. But it is clear that healing is part of the redemptive nature of Jesus’ work. As in the Lord’s prayer…”your kingdom come, your will be done, on earth as it is in heaven.” I’m pretty sure that there’s no sickness in heaven and Jesus spent considerable time healing people as evidence that God’s kingdom was present. It’s a sign of God’s compassion on people’s suffering. The bottom line is that healing is God’s will.

That leads to my own condition with RA. Being diagnosed in and of itself is a long process that often brings mental anguish. There are often more questions than answers. I can say that I’ve learned to trust God more than just about anyother time during the past 4 years of symptoms and 6 months of diagnosis. I find a great amount of mental peace in my relationship with God and through his words in the bible. Apart from that, I’ve been prayed for numerous times over the past few months by a variety of friends from church. I can’t directly say that anything has happened but I still have hope. I know that God’s kingdom will come on earth as it is in heaven.  I may be healed through medicine, diet, prayer, or a combination. Healing may come now, later in life, or when I go to be with him. It doesn’t trip me up either way…I’ll take it anyway I can get it!

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Response to a Butt Kickin’

Yesterday was one of the days when RA reared it’s ugly head and kicked my butt hard. On my scale of 1-5, I was at a 1. I haven’t had one of those kind of days in quite a while since starting on Enbrel. But instead of belly aching and describing all of the bad aspects of the day, I decided to think more about my response.

When feeling so bad, it’s very easy to sink into a low state of mind and to worry about all of the things you can’t do. All my life I’ve been a type A personality who goes, goes, goes. I’ve always known that I need to slow down and take it easy. One thing I notice when feeling bad is that I must slow down. I’m actually finding that a real blessing. In bad flare-up days, deciding to rest and take it easy is the best thing mentally and physically.

The beautiful part of yesterday is that on several occasions, I found myself looking beyond for strength. “I lift my eyes to the hills-where does my help come from? My help comes from the Lord” Ps 121:1. By choosing to not sink into my pain and instead turn my attention upward, God showed up in amazing ways to comfort and give me rest. I admit, it’s not easy doing this, but I’m learning!

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What To Say When They Ask “How Are You Doing?”

As I continue down this path of living with rheumatoid arthritis, I find myself regularly pondering how to respond to friends and family when they ask “How are you doing?”. RA is a weird thing because it comes and goes at will. Of course, my wife knows without any questioning or verbal information from me. She can see the signs. But others don’t live with me everyday, or have a thorough knowledge of RA, so it’s much harder for them to understand. Therefore, I thought of creating a scale of 1-5.

5 – Yea! I don’t even remember I have RA. (I honestly can’t remember the last time I felt this way but hope it happens in the future)

4 – Having a good day. I can live pretty life pretty much normally. Be productive at work, cook dinner, garden a little, walk the dog, perhaps exercise. Maybe feel a few reminders in those ole joints and experience some loss of energy but have a kick in my step. I’ve had some of these since starting on Enbrel.

3 – I know I have RA. These days I will have joints speak clearly to me reminding me of stiffness and pain. It slows me down and I’m not able to accomplish everything I want. Usually morning and evening are the hardest. But I can feel good about being somewhat productive. Can get by without a nap. These seem to be the most common with me lately.

2 – Bad Day. I hurt and I’m stiff all day. Energy level is low. Walking up and down the stairs is not fun. Every task is difficult. Naps are required. Prednisone steroid is necessary. I must scale back my to-do list.

1 – Horrible. Fatigue is kickin’ my butt, laying around most of the day, every joint is swollen and stiff, feel like nothing helps, am worthless for anything productive, simple tasks are impossible, feel most guilty and worthless. Fortunately, I haven’t had many of these in a while (thanks to Enbrel)!

But the system above is probably more for me than for explaining to others. I’m thinking a quick thumbs up, thumbs sideways, and thumbs down as a quick response.

At the least, I want my friends and family to ask and I don’t want to mislead them by giving the standard “I’m fine” response. I want to be honest yet succinct. I’d be curious to hear how others respond.

Andrew

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