Posted in Uncategorized, tagged changes, Curveball, disability, fatigue, God, hope, RA, rheumatoid arthritis, treatment, work on September 6, 2013|
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We make plans for our lives, get used to the regular patterns that develop, and act as though nothing will ever change…then RA throws a curve ball. My RA symptoms have not been under control for sometime now, it’s clear that yet another treatment strategy is going to be required, and the treatment options are getting few and far between. Since RA is getting the best of me lately, something had to give and this past week it became clear after much thought and advice seeking that I could not maintain the same level of work that I have engaged in for so many years (I’m a college professor). I finally approached my boss and told him the situation and asked to be relieved of a large portion of my administrative duties which took up the bulk of my time and energies and instead focus primarily on teaching. He was very understanding, made the adjustments, and handled it with such great grace including even taking on some of the responsibilities himself. Such a change brought about a slew of mixed emotions going from relief to sadness that such changes were even required as I enjoy what I do. To add to the internal emotions, this change necessitated informing many people which of course brought concern and questioning. A huge curve ball was just thrown my direction.
During times like this it’s natural for many questions to arise such as…
- Will I be able to continue working in the future or will disability be required?
- Will RA ever get under control?
- Will more effective treatments or even a cure be developed in my lifetime?
- Since I seem to have failed so many treatments, what if I don’t respond to any of the few remaining choices?
But then I realized that life can’t be lived by asking a bunch of “what if” questions. Focusing on such things only leads to stress and turmoil.
In baseball, curve balls present one of the most difficult challenges. Many a fine player can’t make it to the major leagues because of one problem – they can’t hit a curve ball. Give them a typical fastball and they’ll smash it for hits all day long. But once they begin to face higher level pitchers who deliver a nasty curve ball, their hitting goes downhill fast. Former major league baseball player Doug Glanville wrote an interesting article published in the New York Times about hitting curve balls and how it relates to life struggles including his father’s chronic illness. He stated,
“What I found was that your approach doesn’t have to be any different from the one you use when dealing with — indulge me for a second — any other curveball life throws at you. We spend so much time cruising along, looking to hit the straight and dependable fastball, that the audacity of something different can cause us to forget any and every tactic that once gave us comfort and success.”
As he described his dealings with his father’s illness, he intimated that he had to roll with the changes and adjust as needed.
“I had to learn to approach this one with no bat and with a blindfold on. This I accomplished by trying to focus on the few things I could control about getting my father healthier. I did what I could, and left the rest to forces bigger than myself. Even though I didn’t hit a home run on this Olson-esque curveball, at least — by recognizing that it was outside my power to do much else — I didn’t, in a sense, chase a bad pitch.”
Glanville deftly noted that hitting a curve ball requires reaction and adjustment. You can’t keep approaching things the same all of the time and he suggests taking the crazy pitch in stride. This is excellent advice and I must learn to adjust, believe that that things will be fine, and trust that God sees the bigger picture.
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When suffering with a chronic illness like RA, it’s easy to loose hope and get discouraged. This is especially true when suffering with a particularly bad flare for an extended time or when medications don’t seem to be working like they should. Such has been the case for me for the past few months. At times like these it’s critical to reach deep and outside of yourself for hope. For me that meant attending a church retreat this weekend. There were plenty of reasons not to go…the long drive there, fighting the cold and damp weather, sleeping in a different place, hauling all of the supplies and medications, the change in food, the non-stop schedule of sessions and events, etc. But I knew that I needed to attend because it would be there that my closest friends could show care and that I could focus on what was important. During the last session of the retreat a friend came over to pray for me. It was wonderful as he prayed about the things that had been weighing on me…strength for pressing on, finding hope in God, that I would respond to the medications, even for healing. At about the time he was done praying, our worship leader began playing a song called “Sovereign” by Chris Tomlin. The lyrics talk about God being there in both the calm and storm, the dark and the dawn, and that in whatever comes, we can trust Him. These were timely words and a flood of emotions poured out. For the first time in weeks I was able to let go of all the weights and concerns about RA symptoms and medications. Yea, I still feel physically rough and I don’t know what lies ahead. But I know that I can hang onto hope and trust God.
A friend once asked how I could live with all of the pain and fatigue from RA. He said that he couldn’t handle it. Sometimes it is hard to handle but the good thing is that with a chronic disease, it doesn’t all come at once. And the experiences make you stronger, causing you to dig deeper, and learning to foster hope in something bigger than yourself.
Photo of the Cascade Mountains near Snoqualmie Falls, WA.
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About a year ago, in the midst of a bad RA flare and medications that weren’t working, a friend in his late 20s asked how I was doing. I proceeded to tell him about the pain and fatigue that were plaguing me. He got a perplexed look on his face and stated that he couldn’t understand how I could live like that. He avowed that he would not be able to handle it. I found this intriguing because at the time, I had lived with the pain so long and it never dawned on me that I couldn’t handle it. Sure, there were tough times, but it seemed to just become part of my life. I realized that my friend’s response was really based on his lack of experience with suffering. His life was relatively stress-free and he never experienced any major type of suffering. Of no fault of his, he simply lacked perspective.
According to research on life events, personal illness makes the list as one of the major contributors of stress (its rank depends on the currency of the research). [i] [ii] My young friend saw my RA as too stressful. He was seeing it from an acute, one time perspective. Chronic health issues like rheumatoid arthritis are different than acute ones in that they happen over time causing the person to make slow adjustments in perceptions. So how was it that I didn’t perceive my struggles with RA the same way as my young friend? A recent conversation with another friend more experienced with life in general, and various kinds of suffering specifically, reminded me of a verse from the New Testament.
And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. Romans 5: 2b-5
Rejoice in our sufferings? This sounds crazy! I would never ask for suffering and would not wish it on anyone. However, I’ve come to learn that constant suffering with a chronic illness such as RA can lead to a level of perseverance, character building, and eventually hope. Anyone who suffers with a chronic illness learns to persevere and cope. It’s a survival mechanism. Over time, this builds one’s character. I’m always amazed at the patience and wisdom of those who experienced suffering. It’s like they have a quiet understanding…a secret of sorts. Think of a terminally ill person or someone who experienced the horrors of war first hand. And finally, there’s hope. Even in the midst of seemingly hopeless situations where RA pain and fatigue are constant, there’s always hope of a better day, new treatments, and no more suffering. Sure, I want RA to go away. But for the time being, I can be thankful for the perspective-giving lessons of suffering with a chronic illness.
Photo credit: Creative Commons License http://www.flickr.com/photos/dexxus/
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Last Friday I was up at 5:00 a.m. so I could drive over an hour to get set up for, and then facilitate, an all day teacher training session. One of the topics of the day was states of matter…solid, liquid, and gas. At 5:00 a.m., RA made me feel quite stiff and it took a while to get going. Solid was a good description for my state of matter at that time. Within a few hours, the hustle and bustle of getting ready for the day, combined with the adrenaline of preparing to present to a group of people, plus a triple shot hazelnut latte really got me going. Gas would be a good description of my state of matter at that point. By the end of the day, after being on my feet all day and being in a constant state of being “on”, my state of matter changed into liquid…I felt like a puddle spreading out on the floor. But I couldn’t head home for any rest. That evening I drove to a retreat center where I met my wife and other leaders from our church for a two day retreat. Over the next 26 hours, the puddle failed to solidify and the prednisone pills were pulled out (I keep them handy but try to avoid using them). It’s taken a few days to reach a better state of equilibrium. But even though my body was constantly changing states of matter over the past few days, I again was reminded how wholly dependent I am on the steadiness of the Creator of my body and soul.
Photo Credit: http://www.flickr.com/photos/qf8/
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Posted in Uncategorized, tagged activities, exercise, faith, family, fatigue, friends, God, hope, medical systems, pain, RA, rheumatoid arthritis on October 21, 2009|
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Two workers were busy installing new gutters and gutter covers on my house today. Autumn and Winter in the Pacific Northwest means that more air comes off the ocean bringing with it moisture. Much of that moisture falls to the ground on the Westside of the Cascade Mountains (rain shadow effect). Our home is actually somewhat protected from the Olympic Mountains across Puget Sound, but about 40-45 inches of precipitation falls annually. Only 10 miles east of us, the rainfall increases to 90 or more inches a year as the Olympic Mountain rain shadow is not as much in effect and the air moves up in altitude. The rain usually comes slowly but it is critical that houses have good gutter systems to collect and divert the water away in order to avoid damage. Thus, good gutters are vital.
Once Autumn arrives, the sounds of leaf blowers can be heard almost every day. More often than not, those blowers are on a roof being used to clean gutters in order to maintain flow. That was my weekly routine for the past five years. But that practice was interrupted by a visit from rheumatoid arthritis. Don’t get me wrong, I’m thrilled to not have to clean gutters anymore. But hiring a professional gutter installer brings home the point that RA has changed my life. Here’s a partial list of some activities that have changed over the past year since RA decided to kick it up a notch.
- Lawn mowing and gardening
- Snow skiing
- Long walks with the dog
- Visiting the recreation center
- Missing evening events because of fatigue
- Stopping short that awesome Hawaiian snorkel tour
- Learning how to navigate medical systems
- Cutting back on service activities
Sometimes RA brings changes in small increments…droplets. Sometimes the change is more rapid…deluges. RA patients must have good gutter systems to capture the changes and channel it away. Such systems include family, friends, others who are experiencing RA, good doctors, and most importantly, faith and hope in God. My gutter today came in the form of a handwritten card from a family who thanked me for all I had done at church over the past few years. They knew I was in pain and was cutting back on my activities. And the father of this family offered to clean out my gutters a few weeks back. That note, coupled with the offer to crawl on my roof, helped me stay “warm and dry” today.
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Posted in Uncategorized, tagged diet, enbrel, energy, fatigue, God, joint, milk, rheumatoid arthritis, stiffness, swelling on July 9, 2009|
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I’ve been feeling so good lately that I actually went outside and worked in the garden today (see photos below to prove it). I cut low hanging tree branches, weeded four beds, and edged four beds with the spade. Granted, I only worked a couple of hours (not all at once) and did not shovel mulch (my wife did that). But it felt so awesome to garden once again. I paced myself and knew when to stop. I hope I don’t pay for it tomorrow.
In addition to the physical work, I accomplished so much work for my job in the past two days. I even found myself up at midnight last night pluggin’ away on the computer.
It feels like my medicine, Enbrel, is really working. I’ve had almost “normal” levels of energy. While I’m still feeling stiffness, pain, and swelling in a variety of joints, it’s not to the point of inactivity. So far, so good. I’ve not taken prednisone steroids in a long time.
I’ve also been reading a lot about the role of certain foods in rheumatoid arthritis. The evidence is mixed but there may be a link between food sensitivities and some arthritis symptoms. I”m not sure where that will lead but for now I’m trying to cut out all dairy…so hard because I love milk, cheese, and ice cream. But I’ve grown to enjoy vanilla soy milk from Costco (except in lattes).
I thank God for such a wonderful set of days!
A weeded and edged garden bed.
A pile of branches that I cut. I’ll have to haul them tomorrow.
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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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