I’m Losing My Grip

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I am losing my grip. I don’t mean my grip on reality (although that’s a possibility). I mean the physical grip in my hands.

When I was diagnosed, there was a notation on my chart that the diagnosis included some aspects of ankylosing spondylitis which generally affects the spine and larger joints. This is no doubt true. Within a month of diagnosis, I had a hip replacement followed within six months by a shoulder replacement and subsequently by a knee replacement and two spinal fusions. I was definitely not following the “usual” progression of RA which often initially attacks the smaller joints in the hands and feet.

That appears to be changing.

Read the rest of the article at RheumatoidArthritis.net.

Navigating the RA/Workplace Tightrope


According to the CDC, an estimated 62% of adults with arthritis are younger than 65 years old[i], which means that the majority of people who are living with arthritis (including RA) are in their prime working years. Achieving a work/life balance is hard enough, but it becomes exponentially more complex when you layer on an unpredictable chronic condition that may require a great deal of time to manage symptoms and treatment.

My work life started early with babysitting and waitress jobs as a teen. It morphed into a great career that was challenging and rewarding but often required 70+ hours a week and frequent travel. While I know many people with RA who successfully work full time while managing busy lives and families, the balance in my life shifted eight years ago when I was diagnosed with RA. Frequent fatigue, flares, multiple joint-replacement surgeries and recovery periods and resistance to treatment plans all conspired against my ability to sustain my fast-paced career.

While the RA/workplace balance is indeed a tightrope, I found it can be navigated with the three-pronged approach of the support from your rheumatologist, your employer and your community.

The first key component for me in navigating this tightrope is a good rheumatologist. Clearly discussing your career with your rheumatologist will help you set and meet realistic goals, especially in these important areas:

  • Creating a treatment plan together for optimal disease control that also meets your work restrictions. For example, is an occasional infusion more convenient for you than more-frequent injections of a biologic medication? Some treatments may require time off from work which is something to consider.
  • Providing professional guidance on workload. Your rheumatologist is an excellent resource to help determine if workplace stress is a factor in your disease activity and can help you make decisions about your employment to improve your health. This might mean seeking a less-demanding position or even changing from a full-time to a part-time position.
  • Supporting a decision to leave the workplace due health reasons. Because of the great treatment options now available as well as aggressively treating RA at an earlier stage, many people can enjoy long careers. However, should you need to leave the workplace to concentrate on your health and manage your RA as I did recently, your rheumatologist will be critical in documenting this for extended leave requests or disability claims.

The second crucial part of the equation is, of course, your employer. As reported in a New York Times article[ii], laws protecting people with a chronic illness “are thin and somewhat vague.” In addition, you have to be aware of—and comply with—your employer’s specific policies on attendance and sick leave. While some people choose not to disclose they have a chronic illness, at some point you may need to ask for accommodations, so it’s best to have an understanding of the laws and policies that apply to you. At my last job I was in the enviable position that the Human Resources Director also had RA so she had a first-hand understanding of my situation.

Your employee manual should detail company policy. Two important laws that affect the situation are the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA). Both apply to companies of a certain size (the ADA to companies with 15 or more employees and the FMLA to 50 or more employees), but smaller companies may adopt some of these guidelines as well.

  • The ADA provides certain protections from discrimination against people with disabilities and the framework for accommodation in the workplace. Getting your personal RA situation defined as a disability can be a challenging endeavor. However, my experience is that if you ask for a reasonable accommodation because of an illness, your employer will try to work with you. The key here is to be reasonable. If you need to come in half an hour late because you have a physical therapy appointment, your employer will be more inclined to work with you if you offer to stay late to make up the missed time.
  • Generally the FMLA provides for 12 weeks of unpaid leave due to your illness or if you need to care for an ill loved one. Company policy may require you to use up any paid leave prior to applying for FMLA.

For various reasons, I made the decision not to disclose the full extent of my RA condition until I left the workforce. Until that time, I dealt with the situation on an as-needed basis – such as, “I need to have knee replacement surgery.” Your decision is also a personal one and should be made based on all the factors that affect you. I can only say that from my experience that being as honest as you can with your employer may help pay dividends.

As a disclaimer, this is not legal advice. This is general information that I’ve learned from personal experience. You should discuss your situation with a legal professional if you have any questions.

The final piece of the puzzle is one that sometimes gets overlooked, and that’s community. Connecting with people who have faced similar challenges can be very empowering. It can lead to valuable sources of credible information and resources that you need to navigate balancing work and living with RA. I encourage you to build your own community and “go-to” resources to help you on your journey. One of my favorite sources is JointDecisions.com because it is specific to understanding and managing RA from the patients’ viewpoint. It’s an important resource I use.

Your rheumatologist, your employer, and your community – all are essential components to finding that critical RA/workplace balance. You should use all of them to your best advantage.

This post is sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions.

[i]       http://www.cdc.gov/arthritis/data_statistics/arthritis-related-stats.htm

[ii]       http://www.nytimes.com/2009/06/20/health/20patient.html?_r=0

I Am So Tired of Fatigue

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Fatigue seems to be an integral part of RA. Read more in my article on RheumatoidArthritis.net:

 

I Am So Tired of Fatigue

In a Word …

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So, pop quiz. Describe your RA in one word. (And please feel free to share your word with the rest of us in the “comments” section below.)

At various times since my diagnosis eight years ago, I’ve been asked to describe or explain or discuss RA a number of times. This latest one-word question was asked as part of RheumatoidArthritis.net’s 2016 RA in America Survey. (If you haven’t taken it, I encourage you to take a few minutes to do so. Links to this year’s survey and the results of last year’s are on their site.)

My word: Relentless.

I’ve used a lot of words to describe my RA, some of them with four letters. And maybe this is just how I’m feeling at the moment. But honestly, I am really, really tired of having RA and its relentless attack.

I go on vacation; RA comes with me. I try to sleep at night; RA wakes me up. I try to get stuff done in the day; RA interrupts. I’m feeling really good; RA decides to flare.

Prior to RA, everything was temporary. Got a cold? Wait a week. Have an infection? Take some antibiotics. Sprain an ankle? Take it easy for a few days. That’s because prior to RA everything would eventually go away.

I think when you’re told that you have a chronic, incurable disease, your mind goes back to prior experience, or at least mine did. And that experience included colds, infections, and sprains that eventually cleared up. I had this image of joint pain popping up a couple of times a year (maybe) then leaving me alone the rest of the time.

I do okay most of the time, but I’ve learned to live with — or perhaps “live around” — RA. I know to move slowly in the morning because everything is going to be stiff and painful for a while (generally until I have a hot shower). I wear comfortable shoes and try to eat right and take my meds and show up to have labs done every four weeks. RA and I have become uncomfortable roommates.

Even on those days where I’m feeling pretty good, I can tell I’m losing ground. I can’t grip as well or as for as long as I used to, even a few months ago. Standing (or for that matter, sitting) for long periods is out of the question. Kind of like a new grey hair or a new “smile line” around my eyes, it seems like I find more evidence of RA’s relentless pursuit every day.

But I also have other words for RA. Words like “hopeful” because there are so many more new treatments on the horizon, and there is so much more education and information and, especially, patient empowerment than ever before.

So share your word (PG13-rated, please). And thanks for checking in.

 

 

Why Being Older Can Complicate Treatment for RA

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I read an interesting article the other day concerning the challenges that rheumatologists have treating an aging population. The topic actually surprised me because even though inflammatory diseases can affect people of all ages, the incidence of RA increases with age. Per the CDC the incidence for people 18 to 34 years old is only 8.7 per 100,000 vs. 89 per 100,000 for people 65 to 74 (more than 10 times as great). It would seem, then, that older people would be the primary patient population in a rheumatologist’s office and therefore, there would be a great deal known about treating this particular age group.

Read the rest of this article at RheumatoidArthritis.net here.

Healthline Honors Me Again

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This month marks my (count ’em) eighth year of writing this blog. Eight years of 2016_badge_list_v2_badge-rheumatoidarthritisdocumenting treatment plans, surgeries, frustrations, insurance and disability fights, and (yes!) victories. The blog started as a personal journal to document my journey with RA and to keep friends and family up to date with my progress, so I am always amazed to find out other people actually read it and even more astonished when it receives recognition. Healthline.com, which provides a wealth of incredible information, has honored me again (fifth year in a row!) as one of the best rheumatoid arthritis blogs of 2016.

Fortunately I am in good company as Healthline has selected some of the best of the best RA bloggers and health advocates to include in this year’s list. I’m proud to say that many of them are personal friends of mine and to them I offer a well-deserved, “Congratulations!”. I invite you to visit the entire list and if you aren’t acquainted with these talented people and their blogs, that you take a minute to do so. It will be time well spent. See the full list here.

Miscommunications Between Doctors and Patients

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As a member of Joint Decisions, I’m excited to tell you about a Facebook Chat they’re having tomorrow evening, 7/21 at 7 pm Eastern. It’s entitled, “Seeing Eye to Eye: Remedying RA Miscommunications Between Doctors and Patients,” and features Dr. Ellen Field. To join the Facebook chat, visit the Joint Decisions page at the designated time and respond to chat questions by sharing your thoughts in the post’s Comment section. Hope you can attend!

Joint Decisions Facebook Chat 7.21

  • Want to stay up to date on all things #JointDecisions? Sign up for their emails po.st/E28voF
  • Don’t miss another #JointDecisions event—visit their website for a full list of upcoming chats: po.st/DuDXzl
  • Lots of great #JointDecisions events coming up. Don’t miss them! po.st/DuDXzl

 

Dealing with Drug Side Effects

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Drugs can have unintended consequences. We want them to do the good stuff to fix the problem we’re having but unfortunately, they usually come along with things we don’t like. I’ve been on several drugs since my RA diagnosis eight years ago, so I’ve seen my share. The good news is that I’ve found that many of these side effects are temporary as your body gets used to taking a new drug and they will often fade completely or be less bothersome over time. Here are some of the more common side effects and how I’ve dealt with them: (read more at RheumatoidArthritis.net)

 

 

Killing Each Other Isn’t the Answer


By all accounts, the protest was peaceful. Both the officers there to assure order and the people involved in the march commented that it was peaceful. Based on video footage, there were people of all races in the crowd.

Then the shots rang out and a dozen people were hit, five of them fatally.

The officers that were shot were not involved in the incidents in Minnesota and Baton Rouge this week. They were there to help ensure the protesters right to Freedom of Speech. Why kill those who are ensuring your freedom?

I do not know what the answer to race relations in our country is. I have grown up in diverse populations all my life and have had friends of all races, religions, and sexual orientations. I have found both good people and idiots in all walks of life. I tend to look at the individual person so it’s hard for me to fathom those who categorically dismiss whole populations because of a difference of skin tone, or how they pray, or who they love.

But the one thing that I do know is that killing each other is not the way to bring us together.

And while the recent high-profile deaths of African Americans by white police officers are seen by many as unwarranted, the killing of Dallas police officers last night was a deliberate act of terror. There is a difference. But the fact is, both need to stop, and more open discussion needs to happen.

My heart breaks for the victims and their families as well as for my city and my country. We are better than this.