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My battle with RA unofficially began with a first autoimmune system in 2004 and officially with a diagnosis in 2009. Since then it’s been an ongoing battle with symptoms, multiple joint surgeries, and trying every treatment available to modern medicine. But for now the disease won forcing me to stop working. I’ve been on short-term disability since January 1st and starting July 1st, I will begin long-term disability (LTD). My rheumatologist and I have talked about this over the past couple of years and it finally came to the point that I just couldn’t keep up with work.

I am fortunate to have an employer that takes out a LTD insurance policy for each employee. The cost of this policy is quite low per person but the benefit is a real blessing when it is needed. There are very few employees who need to access this benefit and in fact, I was the first case for my human resources case manager. The process for applying involved starting with short-term disability (STD) and having my rheumatologist complete Family Leave and Medical Act (FLMA) paperwork. STD is covered by my employer, initially lasts for 3 months at full pay and benefits, and can be extended for another 3 months at 60% pay and full benefits. During the STD, paperwork for LTD was processed and include multiple forms and having all medical records sent to the case manager. Once all the paperwork was in, a decision came rather quickly to approve LTD.

One requirement for LTD was being off work for at least 180 days. That is accomplished with STD. The benefit for LTD includes 60% of my base salary plus continued employer contributions to my retirement account. I will eventually apply for Social Security Disability Insurance (SSDI) and the LTD insurance provider uses legal staff to help in the application process. Once SSDI is approved, any benefit given will be used to offset that portion of my income benefit from LTD guaranteeing that I’ll be insured of receiving the 60% of base salary. I’ll be able to use COBRA to continue health, dental, and vision for up to 29 months and once SSDI is approved, I can move to Medicare and supplemental insurance. The LTD is for 24 months and if I remain unable to work, the classification will change to “disabled” and the benefits remain the same. My LTD insurance provider has a return to work incentive whereby I can engage in part time work up to 40% of my base salary essentially providing me with 100% of my salary before disability. If SSDI is approved, the return to work incentive becomes much more complicated but I’ll cross that road when I get there.

This process brought about a whole host of feelings from relief of the stress of work to facing the unknown. Upon diagnosis, one of the first thoughts that came to mind was the notion of being disabled someday. That day has arrived for me. But I’m so thankful for supportive family and friends and an employer that really cares about us and had the forethought to provide LTD insurance.

The good news is that with the advent of biologic medicines, the rates of RA-induced disability are lower than in previous times. However, there remain a large proportion of RA patients who end up unable to work and are at the mercy of SSDI alone. This puts undo hardship on those who suffer from the debilitating effects of RA.

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5444096544_b0128da571We 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…

  1. Will I be able to continue working in the future or will disability be required?
  2. Will RA ever get under control?
  3. Will more effective treatments or even a cure be developed in my lifetime?
  4. 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.

Creative Commons Licsense Photo Credit: http://www.flickr.com/photos/24742305@N00/5444096544/in/photolist-9i5qew-8EWHyq-9GYQJR-dcnBPu-bPfjH4-bAkF6G-bPfjN6-edZuvj-edTNwR-edZqrw-edTEuB-edZq9w-edZdkW-edTAXZ-edTB4e-edZoxJ-edTNSH-edZmLQ-edTGZK-edZs7u-edZtiw-edTAJ8-edTABP-edZcBm-edTDE2-edZhSC-edZkA1-bKbbLZ-8tBFn6-8tEGSS-8tEH5Y-8tEGL7-8tEGPs-8tEGY9-bAkFbU-bPfjCH-bAkEX3-bAkLfb-bPfpWD-bPfq1K-bAkLaC-bPftY8-d93Pub-8ZQwbt-fFSUGL-8NbhAQ-8N8cLK-7KUCM6-8imU5w-ds18Ns-8U4bff

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Life and work doesn’t seem to slow down and take notice of RA. It’s been a couple of weeks where keeping the head above water is a struggle. Two major reports due, teaching a class of smart graduate students, and preparing for a research presentation are causing my head to spin, work 12 plus hour days, and RA to raise its ugly head. While life goes on, RA doesn’t seem to take notice and give you a break. In fact, just the opposite happens. During times like this, the mental and physical stretching causes RA symptoms to multiply with more joint pain, increased fatigue, and lower sleep quality. Why can’t RA play nice!?

Focusing on the light at the end of the tunnel brings some hope coupled with the fact that my research presentation is in Florida next week…think sunshine, pools, good food, and palm trees. Of course, traveling across 3 time zones and staying in a new place brings it’s own set of RA-induced issues. Sometimes I wonder how or if this sort of increase in work pressure, even if it is not long term, can be maintained while battling RA. At least my RA treatments seem to be working to some degree for now and I have symptom checker medicines for pain and inflammation. I just have to keep from getting stretched too thin that I snap!

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Creative Commons Photo Credit: http://www.flickr.com/photos/dno1967b/7753069168/

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According to the World Health Organization,

“Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.” http://www.who.int/topics/disabilities/en/

In the almost 4 years since being diagnosed and treated for RA, it has become increasingly evident that I can’t engage in the same level of physical and mental activity as in the past. Yes, the natural aging processes play into this as I can tell that at age 51, I’m not the same person when I was 25. But the effects of RA have sped up that process. Up until about 4-5 years ago, I regularly worked out in a gym and went jogging several times a week. After RA wrecked havoc on my ankles and achilles tendons, that level of activity is no longer possible. It’s a good day when I can take a 20-30 minute walk on a flat surface. The ability to do yard work has slowly diminished. My sons mow the grass now and I wonder who will do it once they all go away to college. Stamina levels are much diminished. Simple activities tire me out. My wife is always reminding me to take it easy and slow down.

The butt kicking fatigue caused by RA is a constant struggle not only physically but also mentally. As a type A personality with a work ethic grounded in strong German and Irish farming stock, I had a level of efficiency and drive to outwork most. Those days are gone and although I’d like to think otherwise, I just don’t have the same level of productivity.

Living in the beautiful Pacific Northwest of the United States, one of my favorite activities has been salmon and trout fishing. There’s nothing like the thrill of hooking a large salmon, reeling it in, and landing it in the net. They are elusive fish, with a short season while they are returning to spawn, and the regulations are designed to protect the fish. Many try but few reach success when trying to catch these prized fish which make for amazing table fare. Because of that, I’m not about to let RA stop me from fishing. The Coho salmon season is right now and my friend with a boat keeps asking me to go knowing that I have sinus surgery scheduled next week. The picture is of an 8 pound coho I caught last week. And I’m off to go again today. But I pay a price for these trips and have to rest afterwards. During the trip, I sometimes need help handling all of the equipment. I just can’t let RA stop me!

While hating to admit it, RA has caused a level of disability affecting physical and mental activity. But as long as I can, I will keep pushing and remain active while learning how to say no and rest when needed.

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