Thank You, Lara Spencer

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Lara Spencer is a well-known television personality. Among other things, she covers pop news and entertainment for the highly rated Good Morning America show and hosts the reality show Flea Market Flip.

An athletically trim, bubbly person, last Thursday Lara announced on national television that she would be undergoing hip replacement surgery at the young age of 47. She had the surgery over the weekend and I hope that her procedure and recovery are as wildly successful as mine were. (The first words out of my mouth after my hip replacement surgery were, “This feels so much better.”)

Near the end of the seven-minute segment (about minute 6 — see below), Lara spent some time talking about how all-consuming chronic pain can be. How pain can take over your life and how it affects you mentally, physically, and emotionally.

Thank you, @LaraSpencer.

It seems that the only time we hear about famous people and pain is when they’ve checked into a rehab facility because they’ve abused opioid drugs. Having a high-profile individual like Lara Spencer talking about the realities of chronic pain in such a public forum is amazing. It brings the incredible suffering caused by chronic pain to the forefront and makes it harder for legislators to undermine its devastating effects. (Thereby passing legislation that denies much-needed medication to those that desperately need it.)

The thing about famous people is that they are, in fact, people. Statistically, they should suffer chronic pain just like the rest of us. I understand that they work to have a “perfect” persona. But if we could get more brave, famous people like Lara Spencer to speak about chronic pain, perhaps we could reverse the travesty of the current environment that makes ongoing pain medication an endangered species.

Thank you, Lara Spencer. Sincerest wishes for a full recovery from someone who has been through it.

Thanks for checking in.

The segment can also be seen here.

 

 

What About the Patient in Pain?

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Meet CARA. CARA stands for the Comprehensive Addiction and Recovery Act which was overwhelmingly passed by Congress then signed into law by President Obama in mid-July. The legislation is designed to empower both medical professionals and law enforcement officials with more tools to help drug addicts. There is, predictably, a lot of discussion about this act (particularly in an election year), not the least of which is how the now-approved programs will be funded. But what concerns many of those in this country who suffer from a chronic disease is that it appears to focus on those who abuse drugs with little regard to those with a legitimate need for pain relief.

Read the rest of this article at: https://rheumatoidarthritis.net/living/what-about-the-patient-in-pain/

For Me, I’m Doing Okay

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If you have a chronic illness, you learn to hate that innocuous question, “How are you?” I have found myself caught between smiling and saying “fine” and biting both my tongue and the urge to dump TMI about how I really feel. Now when friends ask, I’m more likely to respond, “For me, I’m doing okay.” Anyone who knows me knows that there is ALWAYS something going on, but if I’m at least on an even keel and dealing with things, I’m doing okay.

That’s pretty much where I am at the moment. In fact, I had lunch with some friends over the weekend. As we commiserated with each other about the current challenges in our lives, one of the remarked to me, “Who would have ever guessed you’d be the normal one?”

But that’s pretty much where I am. Life has been good lately:

  • My recuperation from gastroc contracture surgery has been remarkable. I’ve been released from physical therapy a full two weeks early and I only have one final, follow-up appointment in about a month with my surgeon before he discharges me completely. I can tell I have a bit of stretching and strength building left to go but I really am doing great.
  • Very unexpectedly my Social Security disability claim got approved so I am now receiving full benefits. I (1) didn’t expect it to be approved at all and (2) didn’t expect it to be approved this soon. The last time I checked, they told me I should get a determination by the end of October and that might just be a notice of review extension.
  • I haven’t been feeling like my RA has been well-controlled lately. I had my regular rheumatology appointment this past week and my rheumy made some minor tweaks to my treatment program. Interestingly, to help combat the severe fatigue I’ve been feeling, she reduced my methotrexate dosage. I’ve been on a high level and one of the side effects can be fatigue. Then she added in Mobic/meloxicam which is an NSAID to help control pain as well as inflammation. She correctly pointed out that I have osteoarthritis as well as RA and I’ve done well on meloxicam in the past. I just started this new plan so it’s too early to know whether these changes will work. However, the old situation wasn’t working so I have hope.

So, yes. Compared to a “normal” person, I’m not great, but for me, I’m doing okay.

I hope you are, too. Thanks for checking in.

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 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.

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