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Posts Tagged ‘disability’

It’s been so long since I posted here and felt that some sort of update was in store. I’ve been on short term disability (STD) since January 1st. I must be on STD for six months straight in order to move to long term disability (LTD). My workplace has been wonderfully supportive and has great benefits to aid in this process. All benefits remained in place during this time. Not working has been a real blessing in terms lowering stress levels and helping with rest. While being a tough decision, it was clearly the right decision. I walked away from a lifelong career of teaching that was very rewarding and was what I was made to do. Long term disability starts July 1 at which time I will officially be separated from my employer and will receive paychecks from the LTD insurance company and benefits through COBRA. I will continue to engage in some consulting work to supplement my income.

In the midst of the work transitions, a 7th joint surgery occurred a couple of weeks back. This was on my left shoulder and was basically a repeat of the surgery done on my right shoulder in January. The AC joint was damaged by RA to the point where there was no cartilage and bone was rubbing on bone. The surgeon cut off the end of the collar bone and shaved the shoulder bone to clean up bone spurs. The rotator cuff was in good shape on the left shoulder unlike the right side. Arthroscopic surgery is the way to go as the healing goes much quicker and pain is much less. The shoulder remains quite stiff and I can’t use it much for the next couple of months. However, the right shoulder is causing me more discomfort and that is because the surgeon repaired the rotator cuff which takes a long time to heal.

I haven’t been on any RA treatments since last December. I’ve run the gamut of most available RA treatments and it’s evident that they either haven’t worked or the side effects including migraines, GI issues, and infections were unbearable for me. I can say that not taking meds allowed me to avoid fighting the side effects – this has been pleasant. But the RA disease process has picked up during this period. Joint swelling, pain, and fatigue are on the rise and I know that this can bring more damage from the RA processes. I see my rheumatologist next week and we’ll develop a plan for the future.

In the midst of the craziness, we are moving from Seattle to San Luis Obispo County, CA this summer. This decision was primarily based on our desire to help some friends start a new church in the city of San Luis Obispo near Cal Poly State University. One of our Associate Pastors at our home church in Seattle will be leading the church and there is a team of people going along to help. The new church is called Vista Church. Some people wonder why we would do such a move but this is how churches get started – they are planted by people. Not only will we be able to help with the new church, but the move to the Central California coast will allow me to enjoy sunny and warmer weather and hopefully this will make my body feel better. Our house already sold in a couple of days (the market is nuts in Seattle) and we are currently looking for a house in Cali.

Transitions are a part of life. It’s much easier to sit back in your cozy chair and avoid changes. But getting on the roller coaster and enjoying the ride instead of fighting it makes the journey much more enjoyable. I’ve learned to trust that God will take care of you no matter what transitions life brings.

 

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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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As noted in another post, I seem to have a refractory case of rheumatoid arthritis and have even been labeled as such by my rheumatologist. I’ve been on 16 different RA medications (see list bel0w) since being diagnosed in early 2009 (see https://rheumatoidarthritis.net/living/already-shot/). Some of these medications were taken in combination with one another. For example, methotrexate and Humira. All of these medications failed for a variety of reasons.

The latest drug on the heap of failed drugs is Kineret. I started injections starting Feb 7 after finally getting over a thrush infection which required two different anti-fungals to control. Within a day I started getting migraines and nausea. The migraines were present every day and increased in intensity to the point where I ended up taking migraine abortive medicines multiple times to knock them down. This happened after only having two significant migraine episodes the entire month of January. The nausea was primarily in the lower abdomen, got bad the second day, and increased to the point where it was waking me up in the middle of the night. I was not able to function well during the day. One evening I experienced sharp pains in the lower abdomen and also had some diarrhea periodically . Upon waking one morning, I just couldn’t stomach (pun intended) the thought of injecting Kineret and dealing with the migraines and nausea anymore. I contacted my rheumatologist and asked what to do. She stated, “I agree with stopping Kineret – thanks for trying. Let me chat with my partners to see what they think. There are several new drugs out for psoriatic arthritis that may have early data for RA too.

It’s hard to fathom untreated RA as the impact can be debilitating and disabling so treatment is needed. As my rheumatologist mentioned at the last appointment and in the recent message, it may be time to try something experimental and off label which would require insurance approval. Perhaps it’s time to investigate clinical trials as there are a host of drugs being tested for RA.

Rheumatoid Arthritis Drug  Duration  Reason for Stoping
Sulphasalazine oral

1 week

Allergic reaction – hives

Methotrexate oral and self-injection

2 years

Triggered migraines

Enbrel self-injection

5 months

Lack of efficacy

Meloxicam (Mobic) oral

3 weeks

Gastritis

Salsalate oral

3 weeks

Gastritis

Cimzia self-injection

5 months

Lack of efficacy

Humira self-injection

1.5 years

Reduced efficacy over time

Orencia infusion

1 year

Reduced efficacy over time

Imuran (azathioprine) oral

5 months

Gastric pain, nausea

Leflunomide (Arava) oral

5 months

Gastric pain, nausea, diarrhea

Actemra (tocilizumab) infusion

5 months

Raised cholesterol and triglycerides

Remicade (Infliximab) infusion

6 months

Triggered migraines

CellCept oral

6 months

Gastric pain, nausea

Rituxan (Rituxamab) infusion

2.5 years

Reduced efficacy over time, recurrent and serious infections

Xeljanz oral

3 months

Triggered migraines, gastric pain

Kineret (Anakinra) self- injection

1 week

Triggered migraines, nausea, diarrhea

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RA Supergirl created petition to the White House to add rheumatoid arthritis to the Social Security Administration’s Compassionate Allowance List (CAL). According to the Social Security Administration’s website, the list is “a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.” Rheumatoid arthritis, which can result in disability, is not currently on the list.

I urge you to sign the petition now and spread the word!

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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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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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A confession is appropriate – I’m a tech junkie. Ever since acquiring an Apple IIe computer in the 1980s, the addiction was cemented. While there were a few bad years for Apple when they fired Steve Jobs, his return brought an amazing period of technology innovations including iPods, iTunes (the largest seller of music), new generation Macs, iPhones, and now iPads. Apple just became the largest tech company in the world surpassing Microsoft and is now the 2nd largest company in the world behind…Exxon/Mobile. Pixar studios (think Toy Story, etc.) is also the brainchild of Steve Jobs. Think what you want about Apple or technology in general, but the world is rapidly changing because of these innovations.

Technology is a key part of my professional and personal life. I can’t live without it. Since RA crept into my life, using computer keyboards and mice is becoming increasingly difficult due to joint stiffness, pain, and joint deformity. Several of my fingers are showing the telltale signs of bending away as joint damage occurs. If I spend too much time typing and manipulating the mouse, my fingers get stiff and painful. This led to investigating Dragon Naturally Speaking speech recognition software. My Human Resources department requested a detailed note from my rheumatologist before they would purchase the software for me.

A friend at work, a real tech junkie, recently acquired an iPad and has been advocating for them. This week, I walked into the local Apple store and asked if they had any iPads in stock. Timing is everything…it was the first day they had some in stock and available without a reservation (Apple sold 2 million iPads in 2 months!). Fifteen minutes later I was out the door with one in hand. My primary goal is professional…I plan to develop some iPad applications for use in teaching and learning environments. But I also wanted to determine if it would provide easier use of technology given my RA symptoms.

After a few days, here is my appraisal…

  • It provides much easier surfing and navigation. A simple touch of the screen allows you to move pages and minimize and maximize with ease. There is no mouse strain on the fingers with the iPad!
  • There is less stress on finger joints typing on the keypad since it is a touch pad. But that will take some time getting used to.
  • There is a free WordPress blogging application for the iPad. Most of this post was written with this app. Final edits were made on my regular computer before publishing. This allows me to compose thoughts for blogs anyplace and anytime.
  • Dragon Dictation is a free application available for the iPad. The application converts speech to text. Below is a note recorded in Dragon Dictation using the iPad…

This is my first try at dragon dictation. My goal is to learn how to use dragons but don’t have to type using the keyboard and a mouse. I guess it’s good take some practice to learn how to use Dragon. But I know there are people with RA to use Dragon a lot.

So my first foray into Dragon wasn’t perfect. But with practice, it may serve as a useful tool.

Who knows what the future holds. But technologies like the iPad may provide technology assistance for those with physical disabilities.

Photo credit: http://www.flickr.com/photos/korosirego/

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