My friend and fellow blogger, Wren, has written an excellent, factual article about this important topic. Please find it here:
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
•Chronic lower respiratory diseases: 149,205
•Accidents (unintentional injuries): 130,557
•Stroke (cerebrovascular diseases): 128,978
•Alzheimer’s disease: 84,767
•Influenza and Pneumonia: 56,979
•Nephritis, nephrotic syndrome, and nephrosis: 47,112
•Intentional self-harm (suicide): 41,149
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
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.
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.
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.
Thought I’d update you with other adventures that haven’t (yet) turned out well, one of 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.
Okay: Here’s the full disclosure. This is not about rheumatoid arthritis. It contains way TMI about a personal subject. This is me whining. This is your chance to tune out now ….
If you’ve been paying attention (always a dangerous assumption), you’ve no doubt guessed that I went in for my annual mammogram this morning. My usual routine is breeze in, breeze out, get the “no-problem” results in the mail in about a week.
Got there. Got checked in. Got changed into the cute little pink gown. Settled in with the six-month-old magazines. Slightly past the appointment time, a nice technician called me back and we went through all the standard questions. As we got ready to get down to business, I opened my mouth. (When am I going to learn to stop doing that?)
I have a history of fibrocystic disease. It’s a fairly common, benign condition and mine seems to come and go depending on how much caffeine I’ve had in my life. Since my caffeine consumption had crept up (I now have time to enjoy a cup of coffee in the morning), I wasn’t surprised to find a swath of ropy feeling tissue on the left side where I’ve had fibrocystic lumps in the past. I had found it in the interval between the day I had made the appointment and the actual appointment time. I mentioned this development and my fibrocystic history to the technician, pointing to the area and told her we just needed to be sure we got that area well covered in the images.
Her eyes went wide. Her hands flew to her cheeks. She starts shaking her head. (I’m not kidding.) What I thought was a total overreaction.
She says to me, “I’m sorry, but we can’t do your screening mammogram. At the moment you tell me you have found something suspicious, we have to go to a diagnostic exam and we have to have an order from your doctor.”
I protest. Can’t we just do the screening exam and see what shows up and then if it’s warranted, go to the next steps?
So I’ve already been there about 45 minutes and I’ve got a lunch date, and I am so completely not worried about this situation, that I push a little harder. She presses on (my tender) breast and says she can feel the lump. Fine. So then I asked if we could call the doctor’s office and see if they would send over an order while I was still there and not have to come back another time. (Did I mention that I have wonderful doctors?)
And that’s what happened.
I’m not going to describe the process. If you’re a woman, you already know and if you’re a guy, you really don’t want to know. Let’s just say that they added an extra, really ouchie part at the end.
Afterward she left me in the exam room to go talk to the radiologist. She said if he saw anything, they would need to do a sonogram. A (very short) few minutes later, she’s back asking me to go with her. As we’re walking, she tells me that she’s taking me to see Vicky who will do my sonogram.
So I tell Vicky “yadda-yadda fibrocystic disease … yadda-yadda no big deal … etc.” She agrees it’s probably nothing based on my history and we both politely agree better safe than sorry. Then she starts working her sonogram magic and pointing to the screen showing me what she’s seeing in the area in question. You know those satellite pictures they show of hurricanes where’s all this swirly stuff with a big dark hole in the middle? That’s what it looked like. The big dark hole is what she’s seeing that she says looks “a bit unusual”.
So she captures a series of images and then says to me, “I’m going to go speak to the radiologist and see what he says. Just so you know, he’s very conservative and he may want to do a needle aspiration on this just to be on the safe side. I’m not saying he will, but just so you know that he might.”
I’ve been around enough medical techs who know what they’re doing that when they warn you that something MIGHT happen, you can bet money and take it to the bank. And this lady had been doing breast sonography for almost 20 years.
So sure enough she comes back in trailing the radiologist with her. Love the radiologist. He is reassuring. He is funny. He discusses what he’s seeing. Apparently “simple cysts” are fluid-filled and look solid black and are no issue. Mine, not so much. It has a cloudy center. (I accuse my breast of not trying hard enough …) He wants to do an aspiration — which is where they draw fluid out with a needle to see if they can reduce the cyst in size. If they can’t, they will do a needle biopsy to check for cancerous cells.
I get dressed, meet with the scheduling nurse and schedule the aspiration for a week from today. I have to be off some of my meds for at least five days before they can do it. It’s not a big deal. No prep. I can have breakfast. I can drive myself to and from the procedure. I do have to be careful lifting things for a few days afterward, so my husband has to do the laundry next weekend. It’s almost worth it just for that.
The problem I have at the moment is that I simply CANNOT remember whether he said what he suspects I have is probably a “complicated cyst” or a “complex cyst”. I didn’t know enough to pay that much attention. But when I got home and start asking Dr. Internet, I find that complicated cysts aren’t that big of a deal whereas complex cysts have a much, much higher malignancy rate. I’m almost 100% certain he said “complicated” but now I have that nagging doubt in the back of my mind.
So that’s my (mis)adventures for today. I’m still pretty convinced that it’s nothing and I have no problem with being safe (rather than sorry). It just wasn’t how I expected my day to turn out.
I hope that however your day turns out, it’s neither complicated or complex. Thanks for checking in and listening to me whine.🙂
Those of you who follow my blog know that I’m a supporter of Creaky Joints and the associated Joint Decisions and Arthritis Power initiatives. I have (belatedly) run across a news release from them entitled, “New Study Confirms Arthritis Patients’ Ability to be More Integral Contributors to Clinical Practice Guideline Development.” I’m not going to recite the findings of the study here, but the release (and the study) is certainly worth a read. Importantly, the study stated “that patients developed nearly the same recommendations as physician-dominated panels for questions where there was evidence warranting moderate to high confidence.” Normally treatment recommendation guidelines are determined by panels that, if not completely comprised of physicians, only have one or two patient advocates. This study clearly demonstrates that patients are well suited to participate in developing treatment guidelines.
For (some or maybe many) physicians, this concept is unsettling. I suppose it’s like a driver telling a highly trained auto technician how to diagnose and fix a catalytic converter. But while the technician is the expert in repairing cars, the driver is actually the expert in knowing how the car performs.
The same is true in the doctor-patient relationship. The doctor is certainly the expert in the clinical aspects of a treatment. However, the patient is the expert in knowing how they feel as well as which treatments are palatable enough that they will actually comply with them. Only the patient knows, for example, if they’re suffering enough to undertake the additional risks of moving from a DMARD to a biologic in order to find relief.
Having this voice, in my opinion, is critical in defining treatment guidelines that affect, not the doctor, but the patient.
And while some patients prefer to simply follow their doctor’s advice (and there is nothing wrong with this), I prefer being an active participant in my health care.
I hate having RA. But I love living in a time where patients voices are not only heard, they’re starting to be sought. There are many ways to participate. If you want a place to start, click on the Creaky Joints, Joint Decisions, and Arthritis Power links above.
Thanks for checking in.
This blog was just honored by ChronicPainDisorders.com by being named a best Arthritis Blog for 2016. Again, I am in awesome company with other blogs that I also consider some of the best of the best. (I am WAY flattered but I’m starting to wonder if I shouldn’t just quit while I’m ahead and take all this attention and run …. Just kidding.)
Please check out the site and join me in congratulating all the other wonderful bloggers who were also on the list. Click on the link below the “badge” to check it out.