Looking Over Our Shoulders


I wasn’t sure what to title this post, but it’s prompted by the terrible terrorist attack in Brussels yesterday. The fact that my husband and I are scheduled to be in Brussels in a few weeks on vacation didn’t help the “Oh, my God!” feeling the scenes from Brussels evoked.

It seems like many things in life, our vigilance/worry about today’s terrorist environment ebbs and flows. An attack, be it the World Trade Center with thousands of casualties or Brussels with many fewer, galvanizes us and makes us more diligent — for a while. Then life, at least in the U.S., goes on and we get distracted with work and family and holidays and daily life which doesn’t include being blown up by suicide bombers. And the threat of terrorism gets banished to a remote corner of our consciousness (again).

As I live in Dallas, yesterday, interspersed with television coverage from Brussels, were interviews from DFW Airport — one of the nation’s busiest airports and therefore no doubt a prime target. I also reminded myself that I live within a close radius of George W. and Laura Bush. (His neighborhood is much more posh than mine, but close by, nonetheless.) I also travel frequently to Las Vegas and regularly to European capitals as well as other major U.S. cities including Washington, D.C. My chances of being involved in a terrorist incident are greater than the average bear’s. (But hopefully not as great as my nephew who was attending a meeting on 9/11 at the World Trade Center Marriott hotel and barely escaped literally with just the clothes on his back. I worked in investor relations at the time and knew hundreds of people who didn’t make it.)

The news coming out of Brussels was bad enough, but it was certainly exacerbated by all the rhetoric coming out of our presidential candidates. I would almost the candidates say nothing than have them open their mouths and confirm the fact that they don’t have a clue on how to address the situation.

I don’t know the answer or probably even how to effect one if I did know. I have a few (what I think are good) ideas. They don’t include wholesale condemnation of a religious group or ethnic population. They do include more diligence and a more aggressive stance as well as greater participation by other countries.

But on a personal level, we have to be more individually diligent. For me, I need to relook at my priorities when it comes to travel and other activities. I had someone ask me today whether we were going to keep our reservations to Brussels (which is a day trip out of a longer vacation). The answer is, I don’t know. Like New York after 9/11, Brussels is going to be the safest place in Europe for a while. I just don’t know if I want to come face-to-face with the aftermath of the attacks.

I hope that you were not personally affected by the Brussels situation. If you were, I am sorry. And I am sorry for anyone who thinks that blowing up defenseless, innocent bystanders is the answer to anything. It’s simply an act of cowardice.

Thanks for checking in.

Keeping on Track with Those (Pesky) Resolutions

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Stress is bad for you and really bad if you have a chronic disease. Interestingly, the link between stress and failed resolutions is pretty strong. The folks at Mango Health asked me to provide some tips for keeping on track with resolutions. With spring being a perfect time for renewing those resolutions you made at the first of the year, I hope these will help you out. The article can be found on the Mango Health site and on their Facebook page:

Mango Health: http://blog.mangohealth.com/post/141435151460/sticking-with-goals-5-dos-and-donts

Facebook: https://www.facebook.com/mangohealth/?fref=nf

CDC’s Voluntary Guidelines for Prescribing Opiods

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RheumatoidArthritis.net has posted an article with a link concerning the CDC’s new voluntary guidelines for prescribing opiods. I encourage you to review it here: https://rheumatoidarthritis.net/news/cdc-releases-guidelines-for-prescribing-opioids-for-chronic-pain/comment-page-1/#comment-9800.

Below is the comment I left in response to this article. This is a very polarizing subject with many perspectives. I encourage you to make your voice heard in the conversation.

I can only think of people who, like my brother, suffer from intense pain to the point of immobility. He is confined to a wheelchair and, being alone, is dependent on the kindness of friends to drive him many miles to see his doctors. Depriving him of the only medication that brings him any relief or making it even more difficult to obtain is cruel and unusual punishment.

I can only imagine the pain of the 28,000 people who died in 2014 due to opiods. However, these guidelines offer no assurance of addressing these statistics while they have every indication of impeding those who desperately need the drugs.

I do not want to diminish the terrible toll of the 28,000 deaths, but when numbers are used to make a statement, I think it is important to put them in context. Below are the cause-of-death statistics for 2014 from the CDC’s website. http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm Opiod-related deaths don’t make the list. In the interest of saving the most lives with the limited resources afforded the CDC, perhaps they should concentrate their efforts on one of these causes that claimed the lives hundreds of thousands of Americans in 2014.

•Heart disease: 611,105
•Cancer: 584,881
•Chronic lower respiratory diseases: 149,205
•Accidents (unintentional injuries): 130,557
•Stroke (cerebrovascular diseases): 128,978
•Alzheimer’s disease: 84,767
•Diabetes: 75,578
•Influenza and Pneumonia: 56,979
•Nephritis, nephrotic syndrome, and nephrosis: 47,112
•Intentional self-harm (suicide): 41,149

FDA Meets Today on Opioid Drugs

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I just learned that the FDA’s Science Board will be meeting today to discuss a wide range of opioid drug topics (8 to 5 Eastern). The meeting is webcast. While most of us don’t have the time or patience to attend the full meeting (which has already started by the time I got this posted), the link below also provides access to the background materials being provided to the meeting. This meeting has the potential to greatly influence current and future FDA actions concerning opioid drug and pain medication research, production, and prescribing guidelines. For those of you interested, I encourage you to acquaint yourself with this meeting and access the materials provided:  http://www.fda.gov/AdvisoryCommittees/Calendar/ucm487034.htm

Living Well with RA

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Okay, so I’m late in bringing this to your attention, but wanted to be sure you didn’t miss Healthline’s article on tips to living well with RA found here: http://www.healthline.com/health/ra-stories#2.

One of the contributors is Amanda John, the author of the blog, All Flared Up (http://allflaredup.wordpress.com) and a new friend I’ve made through Creaky Joints. I love Amanda’s great sense of humor and wonderful southern charm. Just being around her makes lots of things better, so be sure and check out her tips along with the others included in the article.

Hope you have a great day! Thanks for checking in.

Truth is an Elephant

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In the movie, The Counselor, Cameron Diaz’s character is accused of making a “cold” comment. She responds (paraphrased), “It’s the truth. Truth has no temperature.”

While I have a love/hate relationship with that movie, I love the quote. The truth is what the truth is. However, I’ve come to understand that we seldom (if ever) have the whole truth of any situation.

You may be familiar with the story of the blind men and the elephant. The blind man who felt the elephant’s trunk thought elephants were like snakes. The blind man who felt the elephant’s legs though elephants were like trees. The blind man who felt the animal’s ears thought elephants were like fans. And so forth. None of them were wrong, but neither were they all correct either. They just didn’t understand the entire truth of the elephant.

Similarly if a botanist who studies plants, a zoologist who studies animals, and geologist who studies the earth were to visit the same remote island, their findings would be quite different. It’s not that they visited somewhere differently, it’s that their experiences are filtered by their perspectives.

I am feeling like that elephant or that island.

I have been sorting through my medical records relating to my disability claim. I have one doctor who sees me as a hip and knee replacement, another who sees me as a shoulder replacement and rotator cuff surgeries, another who sees me as torn retinas, yet another who sees me as a high blood pressure / high cholesterol patient. Even my (wonderful) rheumatologist sees me through the lens of RA. I have twelve different doctors that I see on at least a semi-regular basis, and they all see me differently based on their specialty and the condition for which they treated me. Even my primary care physician, who has the closest thing to a holistic overview to me as a person, tends to see me as a snapshot or perhaps a transverse slice. They treat me for what I need that day and, while I try to keep them in the loop with what’s going on elsewhere, they only really have glimmers of the rich tapestry of medical attention I get outside their office.

Unfortunately, unlike the elephant or the island, I need to be seen as a whole person with all my warts and titanium. It’s critical to build an understanding of my overall health picture so that (1) my health care providers understand any complicating factors and (2) the disability insurance people get a clearer picture of my capabilities (or lack thereof).

Wish me luck. Sometimes I feel a lot like the blind leading the blind (elephant).

I hope that whatever elephants are in your room today are friendly ones. Thanks for checking in.

More good news!

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Well the other shoe dropped today on my “(Mis) Adventures in Mammography“. I had the follow-up appointment to do the aspiration procedure, possibly followed by a biopsy.

Things didn’t go quite as smoothly this time when I got there as last week. They hadn’t preregistered me or cleared my insurance, so we had to muck about with that for a few minutes. But that was basically all the bad news to be had.

I had the same great, funny, engaging doctor who read my initial sonogram last time, so I was relieved to be working with someone I sort of knew. Other than a bit of stinging, initially when he injected the lidocaine to numb the area, and then a bit more when he started drawing out the fluid, the procedure wasn’t uncomfortable at all.

The doctor was able to completely aspirate the cyst, meaning that it was a “complicated” simple cyst and not a “complex”, potentially malignant situation. As such, we didn’t have to do a biopsy or any other follow up (except perhaps be a bit more diligent about self-exams than I have been). It turned out that I was facing the monitor and could watch the needle go in and the cyst shrink as the fluid was drawn out. It was really pretty cool.

A bandaid later, I was able to dress, leave and have my husband buy me lunch.

In other news, I have my initial meeting with the disability lawyer in a couple of days. I hope this streak of good news continues.

I hope your day is filled with good news as well. Thanks for checking in.

Me and Mango Health

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I told you that I’d have good news soon and that day is today.

I’ve been offered (and accepted) the both pleasure and privilege of writing a series of three articles for the great folks over at Mango Health. A primary focus of theirs is the Mango Health app (www.mangohealth.com) that really helps build healthy habits as well as help you mind your medications. In addition, they have a super blog filled with helpful articles, useful information, and wonderful stories by other people with chronic conditions.

My first article, 5 Helpful Hints for the Chronic Traveler, appears here: http://blog.mangohealth.com/post/139795648256/5-helpful-hints-for-the-chronic-traveler.

I hope you enjoy it as well as all the other thought provocative content on the site.

Disability Disasters

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Thought I’d update you with other adventures that haven’t (yet) turned out well, one Social-Security-Disability-Claim-Deniedof the most important being my disability claim that has been denied. I’m not surprised but this means that I am now going to have to take hours, days, weeks and maybe months to go through the appeal process — all the while without an income.

I told my PCP about the situation and they assured me they would write whatever medical or legalese that needed to be submitted to help support this effort.

My rheumatologist, who actually called the company to find out what they heck they needed to get the claim approved was incensed. When she spoke to the analyst, he explained the form he needed and told her that when they received that, “…she’d be good.” My rheumatologist took this to mean that once they received the form from her, my claim would be approved. My rheumatologist (and her very patient staff) have all pledged their support in getting this claim pushed through.

So I have requested a copy of my entire claim file — not only the medical records and physicians’ statements, but all the insurance company’s analysis and other notes. And I have an appointment with a disability lawyer next week.

I knew this would be trying, but with everything else going on in my life, summoning the energy to go to battle wears me out just thinking about it. But there is such a major difference in income (vs. Social Security disability) that I can’t not move forward.

Sorry to keep whining. I know that all this will work out and I’ll have some good news to report, just not quite at the moment.😦

Thanks for checking in.

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