The War on Opioids Becomes Personal

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My BFF and fellow blogger Wren has just posted a very personal account on how the now-radical war on opioids can affect the patient — in this case her: https://rheumatoidarthritis.net/living/the-war-on-opioids-comes-home/

The following is the comment I left on the article and I invite you to read both her article and peruse the Academy of Pain Management Physicians’ position papers. Anyone with a chronic painful condition will be directly impacted by the FDA’s new initiatives. We will be the victims.

A major part of this situation is that the FDA and professional organizations are enforcing this war on opioids through pressure on the physicians who prescribe the drugs. While physicians were once patient advocates for pain medication, they are now in the position of potentially protecting their professional licenses by only prescribing the drugs for severe circumstances such as post-surgical and cancer pain. Your strategy of seeing a pain-management physician is a good one. The American Academy of Pain Management Physicians (which is a strong voice of sanity in this seemingly one-sided discussion) has a number of position papers that invite reason and compassion as well as the appropriate prescription of opioids. They can be found here: http://www.painmed.org/press/position-statements/

 

 

Insurance Companies, Privacy and Boundaries

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I wrote about this subject a while back when I discovered my insurance company had listed all my lab/test results for the two-year period I had been covered with them on their website where I could refer to them. https://carlascorner.wordpress.com/2011/04/13/privacy-what-privacy/ And I also assume that the several thousand people who do customer service work for the insurance company could see them as well. I questioned (as I still do) the insurance company’s right to the information (and when/where I gave it to them) and certainly their right to publish it in such an open forum.

Let me just say that I am and will eternally grateful for insurance companies. Without them, my health and quality of life, which is dependent upon affordable health care, would be in a far different state than it is today. I further highly respect their fiscal responsibility to try to control health care costs. But I tend to think the boundary line needs to be drawn at approving procedures and medications, not being privy to personal test results. Or giving medical advice (which is the doctor’s job).

This has pissed me off come up again because I just received a letter from my current insurance company. It’s actually entitled a “Care Consideration” that’s an alert about something that might be improved. In this instance, they’re recommending that I get a Hepatitis B vaccination. I’m not exactly sure why they think this — they didn’t say. I suspect that it’s because one of my liver enzyme tests is slightly elevated and has been for some time. Between being a bit overweight (which translates into fat in the liver) and taking some very strong RA drugs that can affect the liver, you can pretty much anticipate things to be a lot more out of whack than they are. My gastroenterologist, my rheumatologist, and my primary care physician (PCP) have all weighed in on my liver enzymes and I’m monitored with lab work every four weeks. NONE of my doctors have said a word about getting the Hepatitis B vaccine. So where does the friggin’ insurance company come off giving me medical advice?

And then I kind of laughed because I immediately wondered if they would even cover it, even though they recommended it.

As it turns out I have an appointment with my PCP next week for the medical clearance for my upcoming ankle surgery. Being the good patient I am, I am taking the “Care Consideration” letter along with me. The discussion will no doubt cause my blood pressure numbers to go through the roof. I wonder what my insurance company will say about that?

I hope whatever care consideration there are in your life bring you a smile. Thanks for checking in.

Same Drug, Same Procedure, Different Cost

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Insurance companies have different rules for covering drugs depending on whether you get them from a pharmacy and administer them yourself, whether you receive them at a doctor’s office, or whether they’re administered in a hospital or similar health facility. My recent experience cost me an extra $120 just by walking across the street. Read more here: https://rheumatoidarthritis.net/living/same-drug-different-cost/

Awareness of an Invisible Disease

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May is Arthritis Awareness Month. Usually starting in April I get inquiries from various groups asking my help in raising awareness of RA and other arthritic conditions. I don’t mind helping out a good cause, but I tend to point out (rather obviously, I think) that people who read my blog are already aware of arthritis. We don’t need reminding. In fact, what most of us want is to become UNAWARE of arthritis. We want all the pain, stiffness, fatigue and other symptoms and especially medical bills to just disappear so we are completely unaware that we’ve ever had the disease.

(This reminds me of the story of Johnny Cash when he played Folsom Prison. He was told not to sing any songs that reminded the men that they were in prison. His wry reply was along the lines of, “Why? Do you think they’ve forgotten?”)

Most of us are caught in the dichotomy of wishing people understood our disease better and going to great lengths to keep it invisible to other people. It’s a tough balance.

I do what most of us do. I show up when I’d rather lie down.

Invisibility is important to many people for lots of reasons. But awareness is crucial for a lot of important reasons, too.

I don’t necessarily want to repeat myself fully here, but in honor of Arthritis Awareness Month, I invite you to read a favorite post of my entitled, “Being (In)visible” at RheumatoidArthritis.net. https://rheumatoidarthritis.net/living/invisible/

Thanks for checking in.

25 Pounds (and Counting)

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I use this blog to whine a lot, so I thought I would also use it to brag a bit. Over the weekend, I crossed the 25-pound weight loss mark. While I still have a way to go, this is the least I’ve weighed since 2004.

Based on the gradual weight loss I’ve experienced, I expect it will take the rest of the year for me to get down to my goal weight. But I didn’t put all this weight on overnight, so I know I’m not taking it off overnight either.

When I hit the 20-lb mark at the end of March, I did a post at RheumatoidArthritis.net that talked about the decision and the process. If you’re interested, you can read it here: https://rheumatoidarthritis.net/living/weighty-matters/.

Thanks for let me brag on myself and thanks for checking in.

Gastrocnemius Contracture Surgery with PRP Injection

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Quite a mouthful, huh? My left calf muscle is contracted which prevents my foot from flexing correctly which means I don’t walk correctly and also have pain in the calf and ankle.

You can read a more detailed discussion of the procedure here, but basically the surgeon makes small incisions in the Achilles tendon which then heals in a lengthened state. As part of the surgery, I’m having a platelet rich plasma (PRP) injection into the tendon. This kind of therapy has been shown to benefit healing in tendon injuries and repairs. They will spin down some of my blood, extract the platelets from it, mix them with some of my plasma and inject this into the tendon.

Then it’s a few weeks in a boot and six weeks of physical therapy and hopefully we’ll have solved another problem.🙂

I’ve done the steroid injections, the physical therapy, wearing a split to sleep in at night, putting a lift in my shoe, stretching exercises and every other conservative treatment that might work with little to no result.

I’ve got about a month to get ready for the surgery which is scheduled close to the end of June. Of course, having RA, I have to coordinate my treatments and medications to make sure I don’t cause healing or infection issues.

There’s no way to really determine what causes this. It’s probably more related to wearing 3″ heels for decades than anything to do with RA. But RA certainly doesn’t make things easier.

I want to thank Kim for her detailed posts at http://si-instability.com/my-endoscopic-gastroc-soleus-recession-surgery/ which gave me some great first-person insights as to what to expect during surgery and recovery. Finding this kind of information written by patients helped me when I was first diagnosed and went through hip replacement surgery and inspired me to start this blog in the hope of paying it forward.

I hope whatever surprises your calendar holds are happy ones! Thanks for checking in.

(Not) Communicating with your Rheumatologist

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I used to have a sign on my desk that said something along the lines of,

“I know you believe you understand what you think I said, but I’m not sure you’re aware that what you heard is not what I meant.”

Being a professional communicator for the majority of my career, I can tell you that it’s both about putting out the right message AND making sure that your audience hears and understands it. It’s amazing how a conversation between two people can be understood so completely differently by the people having the conversation. This happens between spouses, boss and employees, and certainly parents and teenagers.

IMHO, miscommunication is never more critical, however, than between doctor and patient. The amount of this miscommunication to me is astounding.

Earlier this week Pfizer issued a news release about the results of their latest findings through its global RA NarRAtive survey that assessed the quality of physician-patient communication and its relationship to RA disease management. The survey involved more than 1,700 rheumatologist in 15 countries and demonstrated disconnects between patients and physicians across multiple aspects of RA disease management.

What’s weird is that both physicians and patients agree that better communication means better disease management, yet significant gaps exist. I invite you to read the release and learn more about the RA NarRAtive via the links above, but here is an infographic that summarizes many of the important findings:

RA NarRAtive

Jack and Carla’s Great UK Trip of 2016

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We’ve officially been back from the UK for two weeks and now that my time zones are finally back in sync, I thought I ought to post about the trip. First of all it was a great vacation but it took a lot out of us physically. My husband and I are finally at the point that this is probably the last big European vacation we’ll take. (We have a small trip scheduled for Thanksgiving, but would probably cancel that if it wasn’t so costly to do so.) After this, I think you’ll find us staying on this side of the pond and laying on the beach.

London

London

We flew over on our 20th wedding anniversary. Our first stop was London where we basically took a two-night breather before heading on to Edinburgh, Scotland. Last year we went directly through London on to Florence, Italy and it almost did us in. We learned that lesson well. This year, we built in some strategic “rest” days throughout the trip.

After the initial “landing” in London, we took the train up to Edinburgh. Travel by train is so much easier than dealing with airports and planes and it gave us the opportunity to see some of the UK countryside that we hadn’t visited before.

The weather was great and once we got out of the London area into the countryside, the landscape

UK Countryside

UK Countryside

was dotted with sheep. There were mother ewes, still fat in their winter covering of wool, along with scores of frolicking baby lambs. The land got more hilly the further north we traveled.

 

In Edinburgh, we stayed in a newly developed area called the Quarter Mile. Along with our hotel, it is filled with restaurants and shops and is close to both the University and one of the major parks in the city. Close by is Greyfriar’s Kirk, where Greyfriar’s Bobby is buried.

Edinburgh is fairly compact and even though we were close to easy bus routes, it was also only a 20-minute walk to the center of town which is filled with amazing history and culture.

Greyfriars with the Edinburgh castle in the background.

Greyfriars with the Edinburgh castle in the background.

 

Edinburgh is amazingly hilly and steep. We planned more than one excursion based on whether we were going uphill or downhill. The wonderful, hardy Scots didn’t seem to have any problems negotiating the terrain, but we old, fat Americans huffed and puffed our way through our visit.

Stairs are a common site in Edinburgh

Stairs are a common site in Edinburgh

 

Midway through our stay in Edinburgh, we took the train to Glasgow for the day. You don’t notice it so much in Edinburgh, but once outside the area, you realize that Scotland really is a different country. Signs, like this one at a train station, start showing up in the native language. I don’t completely understand the differences between Gaelic, Scottish, and Celtic, so I won’t try to explain. If you live there, you understand.🙂

Differences in Language

Differences in Language

After five days in Edinburgh, we flew back to London for the rest of our vacation.

We stayed in the wonderful St. Ermin’s hotel where we stayed last year. It’s convenient to everything and the hotel and staff are lovely.

The "Bee Hotel" at St. Ermin's

The “Bee Hotel” at St. Ermin’s

To us, London is a lot like coming home. We ate at some of our favorite restaurants and visited some of our favorite sites. We took in a couple of photography exhibitions — one at the Natural History Museum and one at the Somerset House on the Strand.

Olympic Village, London

Olympic Village, London

The real highlight of the trip, was getting to meet the great Pollyanna Penguin. Polly, an RA advocate in the UK, has chronicled this meeting much better than I could do here. We took a train up to Norwich, a town close to her, and she met us for lunch and a walk through the market. It’s amazing how much we have in common across the pond, but how different things are due to National Healthcare vs. health insurance.

If there were any disappointments, it was that we didn’t make the day trip to Brussels we had planned. Brussels is only a two-hour train trip from London, but due to the recent terrorist attacks, we opted to skip that trip. It was a good thing because I took the day as a “rest” day, which I badly needed. There were days on the trip where I walked almost six miles. My joints aren’t used to that kind of activity and I was really feeling the extra stress even with my traveling companions, prednisone and Voltaren gel.

It was a wonderful, wonderful two-week trip. If it’s going to be our last to the UK, then it was a great one to go out on. And while it was filled with enjoyment and adventures, it was also a real wake-up call about the state of my RA. While I make it through my day-to-day life, I seem to have gone from “absolutely will” to “probably not” when considering many of the more strenuous things I used to do. All that being said, I’m glad I got to do them when I was able.

I hope whatever adventures you’ve had in your life have been amazing. Thanks for checking in.