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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My wife and daughter were watching the 1985 movie “Anne of Green Gables” the other night when a set of dialogue caught my attention. The adopted Anne faces one trial after another and has a knack for the melodramatic. After one traumatic event, the following was said…
Anne Shirley: Can’t you even imagine you’re in the depths of despair?
Marilla Cuthbert: No I cannot. To despair is to turn your back on God.
It’s quite easy to sink into a pool of despair when fighting a chronic disease like RA. Constant fatigue that beats you down into the couch, joint pain that won’t go away, a never ending litany of new symptoms, side effects from drugs, secondary symptoms, doctor visits, a regimen of treatments, health insurance, missed work, misunderstanding by those around you, and the list goes on. But Marilla’s advice rings true. There’s always hope and the fact that God is there brings comfort and peace.
Right now would be a prime time for me to sink into despair. I face an extensive sinus surgery tomorrow and the recovery will not be pleasant. The chronic sinus infections were caused in part by being immunocompromised by RA drugs Orencia and Arava. During the decision making process, I learned about the procedure, recovery, and potential complications. I probably watched too many YouTube videos showing the surgery. But then I ran across some patient testimonial videos and everyone of them said how glad they had the surgery and what a difference it made in their quality of life. This gave hope with a dream of being symptom free in the sinuses.
The symptoms of RA compounded with the symptoms of chronic sinus infections have not been easy. It is easy to despair at times like this. But I don’t want to take the easy route because it doesn’t lead to anything productive. I can’t turn my back on hope and God.
The surgery is scheduled for tomorrow morning. Monthly Orencia infusions continued on schedule although I was instructed to stop Arava right before the surgery and into the first week of recovery in order to my immune system a better shot at fighting infection. I’ll provide regular updates during the recovery time.
Photo credit: http://commons.wikimedia.org/wiki/File:Green_Gables_(NHSC_chart).jpg
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Posted in Uncategorized, tagged achilles tendon, ankles, antibody, biologicals, bone erosion, diagnosis, enbrel, fatigue, hope, leflunomide, rheumatoid arthritis, rheumatologist, TNF blocker on June 6, 2012|
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I’ve been absent from this blog for almost 1 ½ years, I decided to jump back and start writing again. And much has transpired since the last post. After stringing it out as long as possible, I had my third ankle surgery in late November 2011. The orthopedic surgeon cleaned up bone erosion on the top side of the heel bone, removed a bone spur poking into my Achilles tendon, removed a bursa sac, and repaired mores tears in the Achilles tendon. Tissues samples were sent to pathology and the lab results noted bone erosion and inflammation caused by rheumatoid arthritis.
Stopping Humira injections in early November 2011 was necessitated by the pending ankle surgery but also by the fact that it just wasn’t helping that much anymore. In addition, a 3 cm swollen lymph node in my armpit needed to be checked out. Short story – saw a great oncologist and after many blood tests, an ultrasound, and a CT scan with iodine contrast, everything came back negative with no lymphoma! One interesting blood test result was that I had a positive Rheumatoid Factor test for the first time. I was finally seropositive and felt like I was no longer the seronegative stepchild of RA. Although I know that upwards of 30% of folk don’t have positive RA blood tests.
I was started on Orcenia infusions in January 2012. I was done with TNF blockers after using Enbrel, Cimzia, and Humira. After insurance approval, I had three loading doses every two weeks before moving to a regular schedule of once a month. Having a nurse administered infusion at a clinic was a new experience compared to self-injections of Enbrel and Humira. It was a rough few months but I began to get back some energy and have less joint pain and stiffness.
By this point, I decided to pursue a new rheumatologist. I had been with my original rheumatologist from the beginning and he made the initial diagnosis. But over time I began to realize that it was time for a change. I sought out a new rheumy by asking around, checking out published lists of top doctors in the region, and looking at patient reviews online. A choice was made and an appointment with a new rheumy scheduled. As an added advantage, her clinic just relocated to a brand new, clean, and cheery building. I had all medical records sent to her.
The first appointment was a pleasant experience from the beginning with smiling staff, caring nurses, and the fact that I didn’t have to wait. The first thing the doctor told me was that she spent considerable time reading all of my medical records. That was a refreshing to know – she already had an idea about my case before I arrived. She then asked me to tell my story in my own words. Given my history, my new rheumy suspects that I may have a combination of RA and ankylosing spondylitis – an autoimmune condition which commonly affects ankles, hips, and backs. She joked that I would be a good subject for genetic testing! We discussed how Orencia was working and she felt like I would benefit from the addition of a disease modifying drug (DMARD). Since methotrexate and I didn’t have a good relationship a few years ago, she wanted to try leflunomide (Arava). In fact, she suspects that one reason that TNF blockers stopped working was that I wasn’t on combination therapy resulting in the building up of antibodies to Enbrel and Humira. I appreciated her optimism about being able to help and compassion about my experiences.
New adventures lie ahead with a new doctor, new medicines, and new possible side effects. But hope springs eternal just like the sun finally coming out in Seattle.
Photo taken by my daughter on a sunny day in Puget Sound.
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Posted in Uncategorized, tagged chronic, hope on September 6, 2010|
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Cover of Dan in Real Life
There are a set of movies that whenever the chance presents itself, all other things will stop in order to watch them. For various reasons, these movies simply grab my attention and I can watch them over and over again. They run the gamut of drama, comedy, and action and include Shawshank Redemption, Ferris Bueller’s Day Off, North by Northwest, Parenthood, and the newest one – Dan in Real Life.
On a lazy Saturday morning, I found myself watching Dan in Real Life again. Dan is raising three daughters by himself after the death of his wife. He’s struggling with his life and unclear future when a turn of events leads him to meet a woman with whom he falls in love. Things come together and he finds meaning again. Towards the end of the movie, he makes a profound statement, “Instead of telling our young people to plan ahead, we should tell them to plan to be surprised.”
Sure, RA causes changes in life plans…we deal with changes in physical capabilities, mental stamina, finances, energy levels, even damaged bodies. But life in general causes these kinds of changes. We can plan all we want, but “surprises” will come our way. I think what Dan is saying is that we shouldn’t be surprised by the surprises life brings. We should plan as if they are inevitable. Life is not so much what happens to us, but our reaction to it. In midst of exile which brought much pain and suffering, God told the Jewish people, “For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)
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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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