Unfortunately you can’t always blame your joint pain on RA. I am (un)lucky enough to be blessed with both RA and osteoarthritis (OA). Read more in my article on RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/oa/
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/
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.
It can be scary to think about changing your treatment plan. In my most-recent article for rheumatoidarthritis.net, I provide some food for thought and discussion about deciding when it’s time to make changes. https://rheumatoidarthritis.net/living/when-is-it-time-for-a-new-treatment-plan/
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).
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.
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/
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.
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:
Sometimes you read something and you just want to say, “Well, duh!” because you think it’s so completely obvious you wonder why it’s making headlines in the first place.
The headline of an article I read recently is, “Persistent RA Activity Predicts Major Surgery — Researchers stress importance of securing low disease activity”. To an RA patient, achieving low disease activity (or even remission) seems not only obvious, but the Holy Grail of treatment objectives. It’s almost unbelievable that anyone would think otherwise. And if RA isn’t controlled, a logical outcome can be major joint surgery. So why does it take a major study to state the obvious?
There are some very significant reasons for this.
Read the rest of this article here: https://rheumatoidarthritis.net/living/well-duh-obvious-studies-important/
I just returned from a wonderful trip to the United Kingdom that included both England and Scotland. I’ll post more about those adventures and meeting up with the great Pollyanna Penguin in a later post.
As much as I think the UK and the US are similar, I am simultaneously surprised and delighted by the differences. Some of the things are subtle and you don’t notice them at first. Eventually I realized that I hadn’t seen a single television commercial for any prescription medications at all. (I am assuming that has a lot to do with nationalized medicine.) Then I realized that I seldom even saw commercials for over-the-counter drugs. But there was one that really caught my eye, and that was for Syndol, which is a pain-relief tablet that contains 8 mg. of codeine. Yes, codeine. That close cousin to hydrocodone that Healthline.com reports is abused more than any other drug in the United States. In 2014, the FDA expanded regulations on codeine products and nearly all require prescriptions today.
To satisfy myself, I went to the local Boots (a popular British pharmacy chain) and purchased a small box of the product. It was about $5 US for 10 tablets. It contains 500 mg. of paracetamol (the UK equivalent of acetaminophen or Tylenol), along with 8 mg. of codeine and 30 mg. of caffeine to help the drug work faster. Interestingly enough, the medication was recently reformulated – not to adjust the codeine levels, but to remove doxylamine. Doxylamine is an antihistamine and a sedative that is readily available in the US in such products as Nyquil and Unisom.
Okay, so codeine is not as strong as hydrocodone, but while it is an effective pain medicine, it is also an addictive opioid. I thought at first that the UK was not as concerned about the war on drugs in general and opioids specifically as the US, but a search of headlines proved that was incorrect. According to BBC, more than 3,300 people died in the UK from drug poisoning in 2014. But of these, the vast majority — two-thirds — (2,248) were from illegal drugs (including heroin and methadone). Of the remaining one-third related to legal and/or prescribed drugs, only 136 were related to codeine. (Tramadol accounted for 248 cases and diazepam, i.e. Valium, was linked to 258.)
I think what strikes me the most is that even with (or perhaps because of) the restrictive national health system in the UK, people who require pain medication are given easy access to not only basic pain medications (such as Tylenol and aspirin) but also more robust medications (including opioids) and the abuse rate from these medications is amazingly low. Syndol is just one example. I also found Voltarol gel over the counter, which is effectively the same as Voltaren gel for which I have to have a prescription in the US.
My point in all this (if there is a point), is that drug regulation needs to not only control drug distribution, but it must play a key role in helping ensure that people who need drugs, including pain medication, have reasonable access to them. Perhaps by looking at other countries’ experience and examples, such as that of our UK allies, we can help achieve that balance.
I hope today is a pain-free day for you. Thanks for checking in.