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 thought 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.

My (Mis)Adventures with Mammography

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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?

Apparently not.

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.

Uh-oh.

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.”

Uh-oh.

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.

Fine.

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.🙂

When to see the Doctor

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With RA it seems like there is always something going on: pain, swelling, even the occasional fever. So how do you sort out what’s “normal” and when you need to see a doctor (outside your normal checkups)?

First of all, just let me say that in case of any doubt, seek medical attention immediately. This includes severe things like profuse bleeding, vomiting, symptoms of heart attack or other life-threatening signs.

But beyond those things that are clearly emergencies, I use a series of “check-boxes” to decide if something is outside the norm enough to warrant a doctor visit.

Read the rest of the post here: https://rheumatoidarthritis.net/living/when-to-see-the-doctor/

Doctor holding stethoscope

What if it were Wheelchairs

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Today I read a MedPageToday.com article about experts responding to the new FDA Opiod Action Plan. I won’t take the time to paraphrase the article which contains links to the agency’s statement as well as other insights, but you can access it here: http://www.medpagetoday.com/PainManagement/PainManagement/56178?xid=nl_mpt_DHE_2016-02-13&eun=g999342d0r.

Coincidentally I read an article in this morning’s The Dallas Morning News about the widening lifespan gap between the rich and poor. http://www.dallasnews.com/lifestyles/headlines/20160212-life-span-gap-continues-to-widen-between-rich-and-poor.ece While factors like wealthier people smoke less and are less obese were mentioned, the article also stated, “More recently, the prescription-drug epidemic has ravaged poor white communities …”

If you do a Google search, you can find pages of links to discussions about drug abuse and addiction but very few about the actual number of people who are in great pain and who depend on prescription pain relief just to make it through the day. As Time magazine reported in January 2013 after the FDA announced its last revamp of opioid drug regulations (http://healthland.time.com/2013/01/31/fda-action-on-vicodin-may-mean-more-pain-not-less-addiction-or-overdose/), those regulations may result in more pain but not decreased addiction or overdose. Certainly that round of regulations placed considerable barriers for people with legitimate need for these drugs in their chronic battles against pain. However, it does not appear that the regulations made any impact on the number of people who were abusing them. If anything, abuse has continued to rise.

And yes, there is abuse. Unfortunately, there is abuse of all kinds in our society. There is abuse by corporate executives who raid the corporate till, by politicians who take bribes, charities that misspend trusted funds, alcoholics that drink the rent money, teachers that have sex with underage students. The list goes on and on and on. But we don’t comprehensively condemn all executives or charities or politicians or even alcoholics.

Prescription opioid drugs are a tool that makes many people’s daily lives livable – just like a wheelchair does for many people. Just as wheelchairs make people mobile, pain medications are the vehicle that enable people to actually participate in life. So I wondered: what if we substituted the word “wheelchairs” for “drugs” in the conversation.

While I read about many politicians ranting about opioid drug use, I can’t see the same rhetoric coming out of their mouths if the topic were wheelchairs. Instead, I believe there would be a more reasonable discussion about targeting wheelchair abuse rather than making wholesale changes to policies that could condemn deserving people to a life of immobility. Can you hear a politician saying that we should require a patient to go to their doctor every month to make sure they’re still disabled enough to use their wheelchair for thirty more days? It’s a bit ridiculous, but no more ridiculous than thinking that chronic pain caused by an incurable condition like RA or MS or fibromyalgia will magically disappear.

And I have to wonder, just in general, WHY? Perhaps, unlike drug cartels who import illegal drugs into the country or home-grown meth dealers with bathtub chemistry sets, opioid pain relievers in this country are manufactured and/or distributed by American pharmaceutical companies that are already among the most highly regulated businesses in the world. Unlike pouring millions of dollars into the war against drugs, it takes very little effort to tighten the screws a little bit more on an industry you already have under your thumb.

But the fact of the matter is, pain is torture. It always has been. From the medieval torture dungeons and the Spanish Inquisition through potentially illegal activities at Guantanamo Bay, torture/pain is what we use to punish people. By placing barriers and restrictions that inhibit patients in pain from receiving needed medication, we wind up potentially sentencing millions of innocent people to torture. These types of sanctions, as history has already demonstrated, do not impact illegal use, but they do punish people who are already suffering.

In researching some of these facts, I found very few balanced articles or sites that support patients’ rights in this area. One of them is http://www.uspainfoundation.org/. I am not recommending that you join any particular organization. What I am recommending is that one way or the other you make your voice heard.

Wishing you a pain-free day. Thanks for checking in.

When Insurance Companies Play Doctor

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Let me just state right up front that I am exceptionally grateful for insurance companies and for the fact that I can afford fairly good health insurance that puts a great medical team and some very expensive drugs within my financial reach. I know that it’s an incredibly difficult business, particularly with the shifting landscape of recent health insurance legislation. It has to be a very tricky balance of containing costs while meeting their fiduciary responsibility to those who are insured.

I get it.

All that aside, it makes me a bit crazy when it appears that insurance companies cross the line and actually start practicing medicine.

Read the rest of this post here: https://rheumatoidarthritis.net/living/when-insurance-companies-play-doctor/