What's Wrong with Healthcare: Getting a Pain Pill Prescription Filled

You want me to fill your prescription?!?   

This series of posts has been a long time in the making.  This year marks 10 years since I started my not-so-new life with daily, disabling chronic pain and fatigue.  I have a multitude of mixed feelings about this milestone, as does my hubby and everyone else who knows and loves me.


As I mulled over my situation yesterday, I realized that, among other things:

1. the current health care system can't fix me or make me even a little bit better
2. I am not happy with much of the "health care" I receive
3. the health care system doesn't know how to care for people with chronic illnesses
4. my initial assessment that health care reform wasn't going to effect me was WRONG
5. I believe there are things my health care providers could be doing for me, but the culture within the health care system often prevents them from providing me with care to relieve my pain, symptoms and stress from chronic illness

Which brings me to Rant #1.

Can You Fill My Prescription?

After years of living with pain and struggling when my pain flares up, I found a pain medicine physician who believe in palliative care, i.e care to relieve my pain, symptoms and stress from chronic illness.  She prescribes narcotic pain medication for me.

I got my second prescription for morphine in mid-January 2014.  I took it to the pharmacy where I got my first prescription filled. When I presented my prescription at the drop-off window, I was told that 1) they didn't have the medication in stock and 2) I needed to check back with them at the beginning of February to see if they get it back in stock.

Really?  I have to wait 2 weeks to get my prescription filled.  And you won't even do me the courtesy of calling me to let me know when you have it? That's not great health care.

Let's Try This Again.... 

So then I get the flu.  And I get busy with a bunch of other doctor's appointments.  I wasn't so low on my pain medication that I needed it right away, but I didn't forget about getting the prescription either.  So it's February and I'm at the pharmacy picking up another prescription, and I remember to ask if my pain medication is in stock.  The pharmacy tech tells me yes, but then I realize that I forgot to bring my prescription!  Ugh.

So some more time passes before I finally find myself back at the pharmacy.  And this time I have my prescription in hand.  Yay me!  I present my prescription again, and again I am told it is out of stock.

Well this time I won't take that for an answer.  I ask the pharmacy tech to order it for me.  She tells me they will "try" -- no guarantees -- and I need to call them or come back on April 2nd to see if the medication has come in.

Really? Again?  This is b***s***.

The Reasons Why My Prescription CAN'T Be Filled

So I talk to the pharmacist.  He tells me:

1) they don't keep this in stock because it's a lower dose than what most patients are prescribed
2) they have problems getting this dosage from their supplier
3) they are the 4th busiest location for this chain and their store has problems keeping this dosage of morphine in stock because of the volume of business they do

Blah, blah blah.  Wait, did he just tell me if I was taking a larger dose of morphine he could fill my prescription???

Then I asked if he could call another location to see if they have the medication in stock.  The pharmacist refuses, stating that 1) other locations won't give him that information over the phone and 2) another location would find it suspicious if he called them asking for this information.

W.....T......F!

It's Complaint Time

Here is the thing.  Right by the drop-off counter is a Notice to Consumers poster from the California State Board of Pharmacy.  The poster says:

"This pharmacy must provide any medicine or device legally prescribed for
you, unless:

• It is not covered by your insurance;
• You are unable to pay the cost of a copayment;
• The pharmacist determines doing so would be against the law or potentially harmful to health.

If a medicine or device is not immediately available, the pharmacy will work with you to help you get your medicine or device in a timely manner."

So when I get home, I head over to California State Board of Pharmacy website and I file an online complaint.

I also head to the chain pharmacy's website and fill out an online complaint there too, letting them know I filed a complaint with the Pharmacy Board as well.

So Will I Ever Get This Prescription Filled? 

Really needing to get my pain medication ASAP, I call another location.  I know this chain's policy is NOT to tell callers if they have narcotic medications in stock because they are afraid of being robbed.  So I start by giving my name and phone number so they can look me up in the system.  Then I ask if the medication is in stock, letting them know I tried to fill my prescription at another location and was unsuccessful. 

I get lucky.  A very nice man puts me on hold, checks, comes back on the line and tells me they have it.  But I guess I won't know for sure until I get my hubby to take me there tonight.

I think there is something really wrong with healthcare if it takes this much time, energy and effort to get a pain medication prescription filled.

My Favorite Smart Phone Health App #NHBPM

Do you often ask yourself, "Did I take my last dose of X?"  Well then, this is the app for you!

The main function of the Med Helper app is to help you create a schedule for all the medications and supplements you take on a regular basis, whether that's daily, weekly, monthly or something in-between. Then, when it's time to take your medicine, you can set an alarm to remind you.

Plus this app can also track medications you take as needed.

If you put in the time and effort, you can even have this app track your inventory of medications and let you know when you need to order refills. How cool is that?

There are also menus for noting your vital signs (like pulse, blood glucose and pain level), notes about your health care and contact information for your doctors and pharmacies.  You can also schedule and keep track of your medical appointments and create multiple user profiles (for yourself, your spouse, your kids, etc.)

There is a comprehensive reporting menu which has the ability to export all the information you entered as spreadsheets attached to an email or saved to programs like Evernote.  At some point the folks at Med Helper say they will be adding a cloud backup feature and I would gladly pay for the Pro version to use it.

There is some work involved to get started, so be prepared because it will take some time to enter in all your prescriptions, especially if you are taking multiple medications. But once they are in there, you are good to go.  Plus if you stop a medication, there is no need to delete it, which is helpful if you ever need to start taking it again in the future.

I tried several similar app before I found Med Helper and I think this is by far the best one.  It is a pretty comprehensive app, but after using it for a while I do have some suggestions for making it even bettert:

• add a sync function to the Android contact and calendar for the doctor and pharmacy contact information and appointment scheduling
• allow the user to create a medication schedule based on the time of day (morning, noon, evening, etc.) instead of specific times (8 am, 12 PM, 7PM)

I was so impressed that I rated Med Helper 5 stars on my review at Google Play.

Quick App Facts

Med Helper

available for Android and iOS

requires Android 2.1 and up

rated 4.3 out of 5 on Google Play

downloads: between 50K and 100K in the last 30 days on Google Play

current version: 2.5 1 1

last updated: 9/11/2012

price: Lite free
           Pro $3.99
website: http://medhelperapp.com/

Screenshots (click to enlarge)




From the Google Play website:

Description

Prescription and Pill reminder. Full featured with logging and data export.  Your healthcare assistant.

MedHelper tracks medication, treatment and appointment schedules and stores information for accurate prescription inventory, gentle reminders and an ongoing exportable log. Taking the right medication at the right time is essential to your personal healthcare. Never miss a dose again.

Features:

-Multiple profiles for family healthcare coordination.
-Alarm reminder with snooze.
-Log of past doses.
-Track multiple prescriptions and inventory.
-Track vitals.
-Record Healthcare team’s contact information and appointments.
-Record Pharmacy information and prescription notes (refills available, etc.)
-Flexible scheduling.
-Exportable reports.

Overview:

Med Helper is designed to require minimal input. For simple situations it can be configured in a couple of minutes. Use it to track prescriptions, refills, medications, doctors, pharmacies and relevant personal info such as allergies.

Notifications alert you when it's time to take medication allowing you to record the specific dosage, snooze the reminder or skip the dosage entirely. Can also be used to track dosages for take as needed medication to help stay within the recommended hourly limits.

Why Aren't There Any New Fibromyalgia Drugs in 2012? #NHBPM

So I was wondering just the other day why I haven't seen any commercials for new fibromyalgia drugs in a while.

A few years ago I thought we were on a roll.  After all, between 2007 and 2009 there were 3 drugs FDA approved for fibromyalgia: Lyrica, Cymbalta and Savella.

What got me thinking about this topic?   A visit with my new internal medicine doctor last week.  I handed her my "therapy tracker" spreadsheet, an impressive list of 42 different medications, from non-steroidal anti-inflammatories to psychotropics, that I've tried over the past 8 years to treat my fibromyalgia symptoms.  Sadly, the majority of these drugs have failed to help me manage my chronic fatigue, chronic pain and chronic sleep problems.

I asked my doctor to take a look at my list and see if there was anything new or different that I hadn't tried yet.  She said she would review the list but wasn't optimistic there was anything left to try.

Coincidentally, I saw new medications mentioned in the October newsletter from the National Fibromyalgia and Chronic Pain Association (NFMCPA) later in the week.  As you might recall, the NFMCPA is the group that took over the patient care responsibilities from the National Fibromyalgia Association (NFA) back in March of 2011.  According to the article, there are only 2 promising drugs in clinical trials: Effirma or flupertine and TNX-102, a sublingual tablet form of Flexeril or cyclobenzaprine. You can read more about them here.

They didn't mention an upcoming clinical trial that came to my attention this past summer.  Dr. William Pridgen in Alabama, while treating patients for a herpes simplex I virus related stomach disorder, discovered the anti-viral cocktail used improved fibromyalgia symptoms too. According to an article over at the ProHealth website, a phase II clinical trial is being planned for February 2013 to test the efficacy of this treatment in a larger group of patients with fibromyalgia.

Needless to say, I'm concerned those of us with fibromyalgia are lacking a highly-visible, nationally recognized and respected non-profit organization fighting for our needs. A clear example is the fact that National Fibromyalgia Day dropped off the National Health Observance calendar in 2011.  The NFA used to serve as the contact organization for this awareness day.

Pondering the state of fibromyalgia advocacy on the national stage got me asking questions that I probably will never get the answers to, like:

• Is it a coincidence that the NFA's heyday corresponds to the same time period during which the FDA approved the first 3 drugs for fibromyalgia? 
• What role did the NFA have in the development, FDA approval and marketing of the first three fibromyalgia drugs?
• Did the demise of the NFA adversely affect new fibromyalgia drug development?

Wow did I get off topic.  So much for my trip down memory lane.

Leaving the past behind, I'd really like to know more about the current state of fibromyalgia research and drug development.  I'm curious enough about this topic to considering making this my own personal research project, that is if I can't find another reputable source already doing this.

What do you think?  What impact did the end of the National Fibromyalgia Association (NFA) have on our fibromyalgia community?  Why do you think we haven't had any new FDA approved drugs for fibromyalgia in the last 3 years?  What do you think needs to be done to get this important issue addressed with medical researchers and pharmaceutical companies?  Please share your thoughts with me in a comment below.

Are You on a Schedule or Just Going with the Flow?

Welcome to another edition of the Question of the Week.

As you may already know, I started Hepatitis C treatment this past Thursday.  That means I am now on a very strict schedule when it comes to taking the 12 pills a day and the one shot a week that comprise the treatment.  And this new emphasis on being "on time" presents a big new challenge for me too!

You see, I am by nature a "go with the flow" kind of gal. I have never been big on detailed schedules or planning my waking time out hour by hour.  Sure, I have used these tools when I was working and when activities I was involved with demanded them.  But left to my own devices, I preferred to be more spontaneous and less clock and calendar driven.

Just ask my husband.  Since we have been together (way before I was disabled) he's been constantly frustrated by my tardiness and my "let's do this now" and "let's do that now" approach to life.

That doesn't mean I don't plan ahead.  In fact, I probably do more planning now that I ever have before because managing chronic illness well demands it.  It's just that my plans often get implemented when the time is right and my body is willing and able, since my level of functioning changes every day.

But now my life is ruled by a clock.  Every 8 hours I must take my medications with 20 gram of fat.  I have a little wiggle room, a window between 7 and 9 hours, but I'm trying hard to stay on time.  That's because I know myself.  If I start pushing my medication time back, I'm going to mess up one day and breach the 7 to 9 hour window, which might be all this darn Hep C virus needs to mutate and become immune to the treatment.

Talk about pressure.

Because I knew this in advance and planned for it, buying tools like a pill box and timer and preparing myself mentally, this hasn't been too bad.  At 4 days in and 80 days to go, I think I am off to a good start.  I just need to stay vigilant...

That said, I know some people with chronic illness who do really well with a detailed daily schedule.  For them, it is an important way the manage their limited energy and get the most out of life. I can't say I understand how it works so well for them; perhaps this is why I have not been able to replicate their success for myself.

But who knows?  Maybe my new pill routine will teach me a lesson about the power of scheduling I overlooked or missed the first several times around...

So what works best for you?  Does your chronic illness respond better to a daily schedule?  Or do you find flexibility is a more important management tool?  Either way, I want to hear what you have to say, so leave me a comment here or over on the Oh My Aches and Pains! Facebook page.

Want to make a BIG difference
by doing something super quick and easy?  

Support me during the 168 164 days
of my Hepatitis C treatment!  

Learn how here.

Related articles

• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)
• Hepatitis C: The Facts (ohmyachesandpains.info)
• Can You Help Me Get Through Hep C Treatment? (ohmyachesandpains.info)

Me & Hep C: Sorting Through My Feelings as Treatment Is About to Begin

I picked up my Hepatitis C medications from the pharmacy Wednesday night.  When I got home, I inspected them, read the drug monographs enclosed with them and found a place to store them for the next seven days while I wait to begin treatment.

As I put them away, it felt weird to finally have my medications "in hand" and not be starting treatment right away.  All that struggle to get them and for now two sit in my hall closet and one in my refrigerator.

It just doesn't seem quite right...

It was then I realized that this was a watershed moment.  I was in the space between talking about doing Hepatitis C treatment and actually doing it.  It was then that the emotions flooded in:

Feelings	Thoughts
anger	I already had cancer...did I really need Hepatitis C too?!?
annoyance	I have my medications but I have to wait a week to start taking them?  Aargh!  I just want get going before I change my mind and chicken out!
anxiety	What have I gotten myself into?  Am I in over my head?
concern	I know this will be hard for me, but how hard will this be for my husband who has a front row seat to this craziness?
courage & determination	I can do hard things!  I can beat Hepatitis C!  I am going to Fight Like a Girl and win!
fear	Will this work?  How bad will it be? Do I have what it takes to endure this?
gratitude	Thank goodness I have insurance that covers this treatment and a supportive husband and friends who will help me get through it.
hope	If I can do this and if the treatment works, this might improve my overall health status for the better.  And that would be all kinds of AWESOME!
resolve	I am doing this.  I am going to stick it out no matter what.  I will succeed.
overwhelm	Two pills every 8 hours and three pills every 12 hours that must be taken on-time or the treatment might not work.  Can I be this perfect?
worry	Side effects--which ones will I get? can my medical team handle them? will they derail my treatment? how will my level of functioning be impacted?

There is a lot going on inside my head and my heart right now.

So my plan is to feel these feelings and trust in the knowledge that, if I don't resist, they will sort themselves out during this final week of waiting. Plus if I feel overwhelmed, I can distract myself.  There are still plenty of things I want to do before I begin treatment.

Ultimately, the act of starting treatment will silence the doubtful emotions and allow me to take the leap of faith required to plunge myself into this treatment. 

In the meantime, on Thursday I purchased a mega pill organizer able to accommodate the blister pacts of Incivek and filled it with the first week of my medications.  Then I broke out the label maker and labeled the box with my daily medication schedule: 6 am, 2 PM, 10PM and midnight.  I also marked Friday as my Pegasys injection day.

While I worked, I observed that my pills are pretty shades pink (ribavirin) and purple (Incivek.)  Then a funny thing happened.  I began to feel grateful for these new "girl power" pills that are going to help my body do quite an extraordinary thing--beat Hep C!

I can't wait to get started...

Related articles

• Hepatitis C: The Facts (ohmyachesandpains.info)
• Book Review: Free from Hepatitis C by Lucinda Porter, RN (ohmyachesandpains.info)

The Health Care Games People Play: What Should I Do?

It's been a long week.  I attended a plethora of doctors' appointments this week so could be ready to start Hepatitis C treatment.  My week included painful procedures Monday and Tuesday and ending with frustration on Thursday when I learned the new neurologist I saw wasn't a good fit for my needs.  Right now I am tired, grumpy and beyond annoyed.

So take what I am about to say with a grain of salt.  Oh, and I have purposely not named names to shield myself from any venting fallout.

A Really Slow Process

One of the things that is really bugging me right now is how long it is taking to get my Hepatitis C treatment drugs.  I saw my hepatologist on January 10th and I learned from the support staff (see below) that he didn't write the prescriptions until January 20th.  Then it took my call on January 24th to finally get the prescriptions faxed to the pharmacy. 

Unbeknownst to me, my primary insurance information got deleted from the hospital computer system, so my prescriptions got sent to a private specialty pharmacy that bills Medicare, my secondary insurance.  I'm not sure how that happened, since I verify that information every single time I come in to see my doctor.  

Getting the Ball Rolling

As I mentioned above, I called two week after seeing my doctor since no one had contacted me like the doctor said they would.  During my first conversation with support staff, I got a "song and dance" about how it takes 2 to 3 weeks to get things going.  It was after that lecture that we got to the business of checking on the status of my prescriptions and discovered the deletion of my primary insurance information.  I then went on to inform the staff of the details of my prescription benefit coverage, which is a separate entity from my primary health insurance.

I thought we ended the discussion with the staff person saying my prescriptions would be re-routed to my prescription insurance's specialty pharmacy.

Confusion Ensues

A day or two later I got a call from the private specialty pharmacy saying that they couldn't find my Medicare drug coverage.  So I called them back telling them that Medicare wasn't my drug coverage and that I had private prescription insurance.  I told them the prescriptions were sent to them in error and were being re-routed to my prescription insurance's specialty pharmacy.  Then this past Tuesday, the private specialty pharmacy called me again wanting my private prescription insurance information.  I called them back once again explaining that the prescriptions were sent to them in error and asking them to please forward them to my prescription insurance's specialty pharmacy.

I then called the support staff at my doctor's office since I was getting the distinct feeling that things were not happening the way they were supposed to be.

Doing Things Their Way

Sure enough, the staff did not send my prescriptions to my prescription insurance's specialty pharmacy.  No, I was told that working with my prescription insurance was a "nightmare" and they would rather use this private specialty pharmacy than deal with my prescription insurance directly.  When I told them I called my prescription insurance and was told the Hepatitis C medications would only be covered if they came from their specialty pharmacy, I was told that I was given incorrect information.

Yeah, O.K., whatever.  I'm not going to argue.  I figured that their private specialty pharmacy would be told the same thing when they called my prescription insurance.  No sense in belaboring the point when it was clear the staff was persistent in doing things their way and perceived my phone calls as "getting more involved than I needed to be." 

Prescriptions from the Barrio?

I decided I wanted to learn more about this private specialty pharmacy the staff is so in love with.  So I Googled the number they called me from and the first link was to their website--which was down.  So I went back to Google to search the other name the staff used for the pharmacy and this is what I found on Google maps: 

My prescriptions are coming from "Rx Farmacia"?
Where is the front door?
And is that crime scene tape on the street in front of the pharmacy? 

Is it just me, or does it seem ________ (insert an adjective here) that a big university medical center rated "Best in the West" is sending my prescriptions for Hepatitis C treatment here?  And O.K., so I shouldn't judge a book by it's cover, but I certainly find it odd that this book's title is in Spanish.

What Should I Do?

In all seriousness, I feel incredibly uncomfortable with my medications coming from here.  I mean, I have seen other private specialty pharmacies and none of them looked like this.  I am praying the my prescription insurance gave me the right information and will deny coverage because I admit the look of this pharmacy conveys the messages "counterfeit medications," "money laundering" and "fly by night."

I mean, I hate to admit this, but based on appearances I trust my prescription insurance's specialty pharmacy way more than this place.  Plus I did some more research and discovered that my prescription insurance's specialty pharmacy can have my medications delivered to my local chain pharmacy location.  The pharmacy pictured above is in East Los Angeles, which is nowhere near where I live or could get to on my own.  So they have to ship my medications and I have to wait around to receive them so I can get them into the refrigerator ASAP.


This all begs the question: if you were in my shoes, what in the world would you do???

I can't wait to read your answers...

ADDENDUM: 6:01 am--After I posted this, I called my prescription insurance's specialty pharmacy and I am happy to report that they received my prescriptions for Hepatitis C treatment.  Not sure if they came from the private specialty pharmacy or the doctor's office; either way I don't care!  I am so pleased with this outcome!  I am now eagerly awaiting a call from Brittany who will facilitate the process.  Because I am worried about the "nightmare" comment (see above), the first thing I am going to do is ask Brittany to call me every time they need something from my doctor's office so I can keep in top of them.

Book Review: Free from Hepatitis C by Lucinda Porter, RN

If you're like me and you're living with chronic Hepatitis C infection, you may be sitting on the fence when it comes to moving forward with treatment.

After all, undergoing treatment is no small thing, especially if you've been diagnosed with genotype 1 of the virus.

Conventional treatment requires a commitment of no less than 48 weeks with pegylated interferon and ribavirin. Then there are the numerous side effects, ranging from mild to moderate, that for some people can be a really big problem. Factor in the cost, the disruption to daily life and the possibility of needing to take sick time away from work and other important commitments, and choosing to move forward with treatment might not seem like such a good idea.

After all, the odds are in our favor that we will die from something other than Hepatitis C if we choose to do nothing.

But with the Federal Drug Administration (FDA) approval of two new direct acting antiviral (DAA) medications this past May, Hepatitis C treatment is starting to look a whole lot different. Some of the benefits include treatment time being cut in half to a much more manageable 24 weeks. Plus doctors have new tools to tailor treatment to each individual patient. These new treatments also come with the risk that the virus could become resistant to the medicine if it is not taken properly, as well as some new medication side effects.

It's a lot to wrap your mind around, all in the pursuit of getting a sustained virologic response (SVR.)  Thankfully, we have help navigating this brave new world from Lucinda Porter's newly released book Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C.

I finished reading her book over the weekend and I highly recommend it to people living with Hepatitis C and their caregivers. Ms. Porter's book reads like a warm and caring pep talk. Her words were exactly what I needed to hear at this moment, as I find myself anticipating the start of my own Hepatitis C treatment at the beginning of 2012. She helped me put into perspective my choice to move forward and allowed me to let go of my fears and anxieties about making it through treatment.

In addition to providing basic information about Hepatitis C infection and an overview of the new treatment regiment that now includes DAAs, the main focus of the book is solid advice about how to successfully approach treatment. It covers topics like managing physical and psychological side effects, following your drug protocol and talking to your medical provider about treatment. It also provides strategies for managing your work life, personal life and finding the support you need to bolster you through treatment. There is even an entire chapter devoted to what to do when your Hepatitis C treatment is over, information I hadn't encountered before but I am so grateful to have now.

Lucinda Porter, RN

As a nurse who has helped patients get through treatment, as well as being a person who lives with Hepatitis C herself and has gone through treatment, Ms. Porter's book is filled with encouraging stories and helpful insights that make this more than just a health reference book. She helps the reader see Hepatitis C treatment as a journey that can help heal body, mind and spirit. She truly believes that the experience has numerous benefits besides just obtaining a SVR, a.k.a. a cure.  After reading her book, I agree.

This book will be my companion through my own Hepatitis C treatment. With so much good advice, I can see myself referring back to this book time and again to answer specific questions, review coping strategies and gently remind myself of why making the choice to treat my Hepatitis C is both important and worthwhile.

The experience of reading this book also helped me get back in touch with my appreciation for nurses. During my cancer treatment, it was the nurses that took care of me when I was in the hospital that really helped me get through my treatments. I have found that same kind of support fills the pages of Ms. Porter's book.

Get a copy for yourself at Amazon.com.

I want to thank Lucinda Porter and Anthony Pomes at SquareOne Publishers for providing me with a copy of Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C to read and review here at Oh My Aches and Pains!

An Easier Way to Take Your Medicine

by LittleMan

Taking medications can be a big part of managing your chronic illnesses.  In fact, for some illnesses, medications are the only treatment option.

In addition, many of us are very sensitive when it comes to medications.  Starting off with a regular dose of any drug can mean big side effects and little benefit.

That's why I have several pill cutters in my home, so I can "start low and go slow," gradually increasing the dosage of any medication I am given to try. But let's face it...cutting a pill into fourths or eighths is really hard to do.  Plus there are some medications that should not be cut--especially those that are long-acting and specially-coated to dissolve slowly.

That's where your pharmacist comes in, only not the one at your local chain drug store.  You need to find yourself a compounding pharmacist.

What Is Compounding?

In the old days, every pharmacist was a compounding pharmacist.  They took the medication you needed and created the prescription your doctor wrote, tailoring it to your specific needs.

Today, it might be much harder to find a compounding pharmacist, but it's not impossible.  Plus the benefits of compounding make looking for a compounding pharmacist worth the effort:

• They can make medications in almost any dosage strength
• They can turn a pill into a liquid or transdermal gel for people who can't swallow pills
• They can create allergen-free medication, such as ones without gluten or colored dyes
• They can add flavor to liquid drugs, usually so that medications are more palatable

While the days of filling a specialized prescription might be over, you can see that compounding remains a good choice for those of us who need a better medication solution than what comes out of a pill bottle.

My Recent Compounding Experience

I recently asked to be prescribed the diabetes medication metformin.

Now I have tried this medication before in 500 mg pill form and immediately had side-effects to it; severe nausea prompted me to stop taking it.  Since my last encounter with metformin, I've done some research and discovered that it might help decrease my Hepatitis C viral load (which at last check was 24,000.000.) That made metformin looked like a good two-for-one choice to treat my diabetes and control my chronic Hepatitis C infection.

Desperately wanting this to work for me, I convinced my doctor to write a prescription for a compounded metformin liquid.  She agreed, instructing my compounding pharmacist to create a 20mg per ml metformin liquid solution using the immediate release tablets.  (The extended release XR or ER could not be used.)  My instructions were to start at a very low dose, 50 mg twice and day, and work my way up to 500 mg twice a day.

I am happy to report that not only have I achieve this goal over a span of eight weeks, I am now taking the 500mg metformin pills twice a day with no severe side effects.  My diabetes is under much better control and I am very curious to see what my next Hep C viral load count reveals.

Could Compounding Help You Too?

Only your doctor and pharmacist can determine if this is right for you.  But it does help to understand what compounding is and educate your doctor about this option if they are unfamiliar with it.  It also helps to talk to a compounding pharmacist to see if your medications can be compounded.

October is American Pharmacists Month

The informational content of this article is intended

to convey general educational information 

and should not be relied upon as a substitute 

for professional healthcare advice.

Question of the Week: How Do You Handle Procedure Anxiety?

Image by kurichan* via FlickrSo I am having surgery on Wednesday, this Wednesday, August 31st.  And I'd be lying if I didn't say that the thought of having surgery is freaking me out.

Thankfully, when I first decided to schedule carpal tunnel surgery, a friend of mine helped me get focused on thinking about the benefits of having surgery instead of everything else.  So for the past few weeks, whenever I've felt my mind wandering to those other things, I just reminded myself, "This might just get rid of that that numbness and tingling that constantly plagued your hands."

But as I get closer, I find it's not working as well. What am I most worried about?  The whole sedation thing during the procedure and PAIN afterwards.

Since I have sleep apnea, being rendered unconscious can be a tricky thing.  Thankfully my surgery is taking place in an operating room and I will be under the supervision of an anesthesiologist.  I am hoping that same level of care follows me to recovery; I'm counting on them to have some measures in place to counteract the sleep apnea if it becomes a problem as the sedative wears off.  I don't have to stay overnight in the hospital, so when I get home I can use my CPAP while I sleep things off.

PAIN is a whole other story.  I already have a prescription for a pain killer filled, but the narcotic I have been prescribed can cause my drive to breathe to be suppressed.  Wait, let me rephrase that: narcotics cause everyone's drive to breathe to be suppressed.  I have no idea if I will be given pain meds in recovery, so I am having my husband take and hold onto my prescription during my surgery.  That way, I can take something as soon as I get to see him.

Despite all my planning and positive self-talk, I can still feel anxiety creeping into my consciousness...

So I want to know from you, what things do you do when you have a procedure or surgery coming up to quell your anxiety?

Please share your tips and strategies with me so I can try them out.  I promise to report back on the ones that help me.  Just leave me a comment here or head over the the Oh My Aches and Pains! Facebook page and post a note on the wall.

Oh, and wish me good luck too!

Thoughts About Where We Are on Fibromylagia Awareness Day 2011

I recently Googled "Why do we have awareness days?" and got page after page of search results on all kinds of different awareness days.

One person said they had a calendar that featured at least one awareness event for each day of the year. Now that seems like quite a lot of causes to keep track of every year. Another person suggested that an awareness day should be: a day of action...that will focus on grass-roots activism organized by local activists. I'm not exactly sure what that means, but that sounds like a lot of action.

Truth is, besides writing this post, I'm not sure what I am supposed to be doing today on Fibromyalgia Awareness Day 2011.

With three FDA approved drugs and a whole series of drug company commercial talking about fibromyalgia, I have to question whether we need a day to make everyone aware that fibromylagia exists. Yeah, I know the point of those commercials was to sell drugs, but I think they also increased awareness and legitimized fibromyalgia. Which I guess lends credibility to the saying, "All publicity is good publicity."

Because of these drug discoveries, it seems inconceivable to me that someone in the medical profession would deny the existence of fibromylagia when there are three drugs they can prescribe to attempt to treat it.

While three drugs are a start, these drugs aren't a cure. More research and development is needed to uncover more treatments. I've read that only 30% of people living with fibromyalgia response positively to the medications used to treat it. Clearly there is more work to be done in this area.

Pinpointing what triggers fibromyalgia would help treatments advance too, not to mention lead to prevention strategies so that no one else needed to suffer daily chronic pain and fatigue.

Plus I know there is more education that needs to happen about what fibromyalgia truly is. There is emerging evidence that fibromyalgia is a brain disorder. That is why drugs like Lyrica, Cymbalta and Savella, which have an effect on the brain and nervous system, seem to help some people with fibromyalgia. Which makes me wonder if the treatment of fibromyalgia will eventually transition from rheumatologists to neurologists.

By the way, knowing that fibromyalgia is a brain disorder helps us understand why it is so difficult to treat. I've heard medical professionals say that neurological conditions present some of the biggest challenges in medicine today. Having spent time at the neurology clinic, both for myself and with my dad who had Alzheimer's disease, I have first-hand knowledge of this fact. The brain remains the last unconquered frontier in medicine. Not only is it still unclear all the things the brain does, there currently are no treatments for restoring brain function to normal once it has been altered or destroyed by illness or disease.

So I think that fibromyalgia awareness today is less about shouting "This illness is real!" and more about educating people that there is still a long way to go to successfully treat this syndrome. It is about continuing to put pressure on all the entities that fund and conduct research on fibromyalgia to keep pursuing with their efforts. I guess this also means that our cause must find a way to wrangle more resources to fund these efforts so that they produce greater results. This seems like quite a formidable task, given that there are at least 364 other worthy causes filling the calendar each and every year vying for the same limited pot of resources to make a difference for their causes too.

Which leads me to my final thought: Fibromyalgia Awareness Day is about hope. Hope that in some research lab somewhere there is a happy accident that results in the discovery of new knowledge and/or new treatments that foster better outcomes for people living with fibromyalgia today. Until that happens, I hope that someone uncovers something honest and real that can truly increase the quality of our lives while we are waiting for our medical miracle. Ultimately, I hope that people with fibromyalgia can one day regain their fullest potential, enjoy life completely and leave chronic illness behind.

I think today I am going to allow myself to daydream about that day in the future when Fibromyalgia Awareness Day is no longer on the calendar.

I'll be back tomorrow with my weekly Mission 2011 post.

Question of the Week: Side Effects--When Is Enough, Enough?

Image by Chapendra via Flickr
It seems like I've been a little bit off my game lately and I finally figured out why last weekend. Since March 17 I've been trying a new medication, one that the neurologist I saw at Mayo Clinic Arizona highly recommended. Unfortunately for me, this medication has been giving me a lot of side effects over the past several weeks.

Too Much, Too Soon

This new medication is the beta-blocker Inderal. Having been on Coreg CR, a different kind of beta-blocker, for the last 3 1/2 years, I honestly didn't think that switching to a different beta-blocker was going to be problematic. So, after I got the prescription filled, I started right away with the 10 mg dose twice today.

Boy was that a mistake.

Within a few days, I developed shortness of breath and swelling of the ankles. I consulted the written information I was given with my prescription and discovered that these were some of the severe side effects. Of course I made this discovery over the weekend when my doctor was not available, so I decided since I had only been on the medication for three days that I should stop it.

Start Low and Go Slow

When I was finally able to connect with my doctor the following Monday, he suggested restarting the medication at a lower dose with the goal of gradually working my way up to the 10 mg dose. Since the tablets were scored, he suggested breaking them in half and starting with a 5 mg dose twice a day. Feeling a little gun shy after my crash and burn experience, I decided to start at a quarter pill twice a day, which is equivalent to 2.5 mg.

I touched base with my doctor a week later, at which time I let him know I was doing okay on 2.5 mg twice a day without side effects, but wasn't sure if that low dose was really addressing my dysautonomia symptoms. He encouraged me to try increasing the dosage up to 5 mg twice a day. So I decided to give it a try.

After about four days on the 5 mg dose I started having side effects again. This time, I developed severe dry mouth, some shortness of breath and persistent diarrhea. Once again, I realized what was going on over the weekend when I was unable to reach my doctor. So once again I decided to stop the medication until I could speak to someone in my doctor's office.

Third Time's the Charm?

I spoke with the nurse in the doctor's office last Monday who informed me that the doctor was out of town. Since she wanted to consult the doctor before changing my medication, she asked me to go back down to the 2.5 mg dose twice a day until she could do so.

To be honest I was hoping she would change the prescription so I could try something different since it seemed to me that Inderal was not a good fit. But I've been a good patient and stuck with the quarter pill twice a day all this past week.

Hopefully I will hear from the doctor today about he would like me to do moving forward.

So When Is Enough, Enough?

In contemplating my own situation, I'm curious to know how you deal with side effects. Do you stick with a medication your doctor wants you to take even if you're having a lot of side effects? Or do you give it a certain amount of time and then let your doctor know you can't tolerate the medication and don't want to take it anymore?

Please share with us your strategy in approaching this subject as well as your experiences by leaving a comment here or heading over to the Oh My Aches and Pains! Facebook page to join the conversation there.

Question of the Week: Got Side Effects?

Image by tamahaji via Flickr
I got another rude reminder of how challenging and risky fibromyalgia treatment can be. Over the weekend a friend wound up in the hospital due to side effects from the drug Savella.

About a year ago I discovered that Savella causes high blood pressure in about 20% of the people who take it. Given I already have some weirdness with my heart courtesy of dysautonomia, like an elevated pulse and wonky blood pressure, my neurologist and I decided to pass on trying this particular drug.

My friend obviously decided to try it when her doctor suggested it. I learned from her posts on Facebook that she experienced a resting heart rate of 120, which prompted an admission to the hospital for cardiac monitoring.

Last year, another friend who lives with chronic fatigue and fibromyalgia experienced serotonin syndrome from the combination of her medications and had to be weaned off them. It was a painful and traumatic experience for her, which I know is huge understatement for how scary and disruptive this experience was for her.

Even I have landed in the Emergency Room because of medication side effects. Seems that the prescription sleep aid Lunesta went from being helpful to keeping me up all night over the course of a few years. I went to the ER when I felt agitated after taking it the last and final time because I was concerned this was a serious adverse reaction. After being given several different medications to treat the side effects, I was finally able to go home and fall sleep some 5 hours after taking it...

Which brings me to some truths about the whole subject of taking medications to treat fibromyalgia symptoms:

• Experts currently estimate that medications only help 30 to 40% of people living with fibromyalgia
• Only three medications are FDA approved for treating fibromyalgia: Lyrica, Cymbalta and Savella
  
• Finding medications that will work for you can involve a lot of trial-and-error and patience
  
• Many medications used to treat fibromyalgia symptoms are prescribed off-label, meaning that these medications are not specifically FDA approved for use in patients with fibromyalgia
  
• Fibromyalgia can make people even more sensitive to medications, which may translate into more side effects and/or the need for smaller than normal doses
• Even when you find a medication that proves helpful, it may become less effective over time
• Most medications are only studied in short-term trials, which means there is a lack of information about which medications work best for fibromyalgia in the long haul
  

I can't begin to tell you how disappointed I am that there aren't better treatment options for fibromyalgia. I also have lost count of the number of medications I have tried without success, most discontinued by my doctors due to intolerable side effects. Which makes me extremely cautious about trying any new medication. I'm definitely "once bitten, twice shy."

So I can't help but wonder what your experiences have been with medication side effects and if they have affected your willingness to try a new medication when you doctor suggests one.

Share your thoughts and advice on this subject here or over on the OMA&P! Facebook page. I am curious to hear what you have to say and look forward to reading all your comments.

Death by Donut & Other Side Effects Your Doctor Forgot to Mention

Image via Wikipedia
If you have chronic illness like I do, chances are pretty good that you take several medications.

When faced with new prescription, I always mention my current medications to make sure there are no drug interactions. I ask my doctor about the pros and cons, which usually includes a discussion of side effects. I go through the same drill with my pharmacist when I take the prescription to be filled and make sure I read the literature that comes with a new medication to triple check.

So when I went to see my diabetes doctor on Tuesday, I mentioned to her that I am more episodes of nausea and vomiting since I start Victoza, the once-a-day GLP-1 agonist that I wrote about in my post Ode to My Cereal Bowl. I told her the latest episode was on Sunday morning, two days before my appointment.

"So what did you eat Saturday night?" she asked.

"I had a turkey burger and fries," hoping that I wasn't going to get busted.

"That's probably it," she said. "It was probably the fat in your meal that caused the problem. GLP agonists can cause problems when you eat too much fat in a meal. Next time, when you have the occasional burger and fries, just take less of the Victoza and you should be fine."

Seriously? I am causing this to myself based on my food choices and lack of understanding on how a GLP agonist works?

Well, apparently being told this didn't really sink in, because I ate a Kripsy Kreme donut yesterday.

In my (feeble) defense, it was the last one in the box and I rarely eat donuts. But my hubby wanted some a few days ago and I didn't want to feel left out, so I got a couple too. The cake ones didn't seem to bother me, but this fried one was a different story. The good news is that this 'experiment' proved the point that I cannot eat something so high in fat when I take a full dose of Victoza. The bad news is that I felt lousy all day long.

All day long I kept asking myself, 'I wonder if anyone has actually died right after eating a Krispy Kreme donut?'

Then I realized that on top of the turkey burger and fries I had Saturday night, I came home and had one of those $@&*! donuts for dessert.

Yeah, no more fried donuts for me.


PS I did a quick Google search and only found one mention of problems eating high fat meals when taking Victoza. It was a comment left by someone over at the diabetes website tudiabetes.org

Question of the Week: How Do You Connect to Others?

Image by gin_able via Flickr
I got together with a few of my friends yesterday.

We talked about our pets, new shoes and recent travels. The conversation got lively when the subject turned to the medications we take for our chronic conditions. That lead to a straw poll on TV commercials for fibromyalgia medications. The consensus: they advertise magical cures that don't happen in real life and all of us who have tried these medications want our money back.

After that, the conversation turned to reading books and how chronic illness makes even this simple task more difficult. Seems fibro-fog symptoms like short term memory problems mean a lot of reading the same page over and over again. I shared that since I now need reading glasses, it's made it more difficult for me to read. Someone suggested books on tape, which sounds like a good solution.

Eventually, the chat dwindled and we all went back to different pursuits, like watching TV, fixing dinner and getting ready for bed.

So how did I connect with my friends with chronic illness last night? By signing onto Twitter of course.

You see, when I first became chronically ill and disabled, I wanted to join an in-person support group. I wanted to meet face-to-face with other people going through what I was dealing with to give and receive support. It was a good idea, but after an exhaustive search, I couldn't find any groups. It seems getting together in person is a tall order for people living with chronic illness...

Then my friend Cyndie introduced me to the world of social media as part of our blogging challenge back in May 2009. Initially, I used social media to get the word out about my blog and share my posts. But then I started to discover how to connect with other people in meaningful ways by leave comments and sending tweets.

So my question this week is How do you connect with other people? Have you been fortunate to find in-person support? Do you use social media and, if so, where do you go online to connect? To participate, leave a comment here or head over to the Oh My Aches and Pains! Facebook page to join the discussion.

And thanks for taking the time to connect with me through my blog.

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A Reader Asks: What medication do you find works for you?

Image via WikipediaA reader asks:

what medication do you find works for you? i hav bn to see my rumotologist today, last time i saw her was 2004! i was told that they now think that fibro sufferes may be missing vitamin d, so i hav had a blood tst to find out, il let you know when i do

Dear Reader:

Unfortunately, I have not found any of the medications currently use for fibromyalgia helpful. Most gave me too many side-effects and needed to be discontinued. Finding something to help may mean a lot of trial-and-error on your and your doctor's part. It can be a frustrating and time/money-consuming process...

For flare-ups (i.e. short-term use), I have found prescription non-steroidal anti-inflammatory drugs (NSAIDs) helped. Long term, these medications were too hard on my stomach to be helpful.

Prescription Lidoderm patches and prescription topical NSAID gels/patches have also helped me. The problem with these is that they can only be applied to 1-2 places on your body at a time.

Here is some information on the prescription mediations currently being used for fibromyalgia: http://bit.ly/9MGrMs.

I tested Vitamin D deficient several years ago and take o 1,000 IU of ver-the-counter Vitamin D a day. Raising my vitamin D levels did not improve my fibromyalgia symptoms.

Thank you for your question! I hope that information helps. Feel free to ask another question any time. :-)

Ask me anything

Just Questions: Things I Don't Understand

Image via Wikipedia
Welcome to another edition of just questions. Sometimes I find it's the questions that I am pondering that provide the greatest insight into where I am currently. So I guess creating this post is metaphorically akin to opening up my brain and checking out what is rattling around inside.

So here are the questions I am currently pondering:

1. Why do my dogs always want to lick my feet?
2. Why don't people spay and neuter their pets?
3. How come having problems swallowing has to be one of my symptoms of fibromyalgia?
4. How come when I have coughing spells after said swallowing problems, a nerve shock wave travels down my arms, into my hands and causes increased pain, numbness and tingling for several hours afterward?
5. Why is it so bad to use a benzodiazepine every night to help one fall asleep?
   
6. How come my doctors aren't prescribing the same medications that my friends with chronic illnesses are getting?
7. How come I am still wanting a prescription to be the answer to my chronic illness problems?
   
8. Why isn't the Hepatitis C cause getting the funding, support and attention it deserves for things like public education, testing and treatment?
9. Why doesn't the American public know that more people have Hepatitis C than HIV infection?
   
10. Why isn't there a bigger push to get antiviral Hepatitis C drugs out of clinical trials and into the pharmacy faster?

What are some of the questions you find yourself asking lately? Why not share one or more here by leaving a comment?

One Sentence--A Sign of Change?

I hate watching commercials on TV for fibromylagia drugs. For starters, none of the women in the ads look like they have fibromyalgia. Plus, do you see all the things these women are doing? The latest one is working (standing up no less) in a bakery, while others have been giving a lecture in front of college students, spending all day touring New Orleans on foot with her husband and the final one was seen gardening, handwriting in her journal and creating art in her studio, all in one day. Let's see, could I do those things? No, no, no to the first three and handwriting is definitely out too. I can do some gardening and art and crafts, but not on the same day. Definitely not arts and crafts like painting that require a lot of fine motor skills over extended periods of time. So I can do two (modified) things out of the six things. That TV portrayed level of activity is not a great representation of my life with fibromyalgia.

These commercials also give the impression that these drugs can produce marked improvements in functioning, almost to the point where someone with fibromyalgia could return to their normal, pre-fibro life. I wouldn't know, because none of these drugs helped me. They only gave me side-effects. Other people I know with fibromyalgia aren't achieving this level of improvement while they are on these medications. I can only conclude that since there is a whole spectrum of severity of fibromyalgia symptoms, perhaps these women on TV started with less severe symptoms.

After months and months of seeing these ads, I almost always tune them out when I hear them. That is until I heard something the other day that caught my attention. I heard just one sentence:

Fibromyalgia is thought to be the result of overactive nerves that cause chronic widespread pain.

This statement is not news to me, but to hear it in a TV commercial? Granted, the medication advertised works on nerves, which is probably why this statement is included. But is it possible that these TV commercials will educate anyone who watches them about the true cause of fibromyalgia pain?

According to the National Fibromyalgia Research Foundation:

While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of Fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.

Translated, this is science-speak for: fibromyalgia is a neurological disorder in which pain signals from the body are amplified by the brain, causing the sufferer to live with chronic, wide-spread body pain from head to toe. So if you say to me, "Selena, your fibromyalgia is all in your brain." I'd reply, "Why yes it is. It's a centrally mediated chronic pain syndrome."

Because fibromyalgia is a centrally mediated chronic pain syndrome, every drug manufacturer on the planet will try and see if their drugs that work on the brain and brain chemistry will work to relieve some fibromyalgia pain. This includes drugs for pain, epilepsy, depression and other mental health disorders. Touting these kinds of drugs for fibromyalgia pain may give some the impression that people living with fibromyalgia are depressed or have mental disorders, but it is clear from the research that mental disorders do not cause fibromyalgia.

I am hopeful that if researchers and doctors continue to follow this line of inquiry and treatment they will stumble across some real and powerful treatments for fibromyalgia. That said, my optimism is tempered by the fact medical science still doesn't know everything there is to know about the human brain and neurological disorders can be some of the most debilitating and difficult to treat conditions. So in the meantime, I will continue to employ the self-help techniques I have learned to manage my symptoms and maintain a modicum of quality of life until the science and medicine of fibromyalgia catches up to me.

But still, I wonder if that one sentence is a sign of change in the perception of fibromyalgia as a medical condition. Perhaps instead of arguing about whether or not fibromyalgia exists, there can be scholarly debate about which area of the brain is responsible for fibromyalgia symptoms. I, for one, would welcome such a change, even if it comes as a result from watching fibromyalgia drug commercials on TV.

What do you think of fibromyalgia commercials? I'd love to hear what you think, so please leave me a comment.

Xyrem: How Does This Make Sense?

Image by caseywest via Flickr

O.K. so the bloom is off the rose. I switched back to my OTC cough syrup because, after two nights with the Robitussion-AC, I was starting to feel a little loopy. My liver, filled with the HCV virus, doesn't like certain medications and has a hard time getting things out of my system.

Oh well...

But that brings me to the thought I had as I was wrapped up my post from yesterday. My last comment was that I wished that my doctors were as worried about me getting a good night's sleep as they were about getting me addicted to controlled substances because maybe I'd be in a different place right now. As I wrote this, I remembered what my sleep specialist does want to give me...

Ever heard of the date-rape drug GHB? Guess what? It is also called the prescription drug Xyrem and it is being prescribed to people with fibromyalgia to help them sleep. Here is the deal, as I have learned from other persons living with fibromyalgia who have taken the drug and one of my doctors who is adamantly opposed to any of her patients taking it:

• If you take Xyrem, you need to be in bed and ready to go to sleep, because within minutes of taking it, your body will be paralyzed.
• If you get out of bed, you risk falling and injuring yourself.
• You risk having an "accident" in bed (so maybe an adult diaper is in order.)
• I personally know someone who took this medication and did not fall asleep. Instead, she lay in bed paralyzed for 4 hours, unable to move, completely awake.
• You take this medication in two nightly doses, about 4 hours apart (i.e. it only lasts for 4 hours.)
• There are side effects like nausea, although the prevailing prescribing wisdom is to have the patient take a large enough dose that they just sleep through the side effects.

After the sleep specialist first suggested this drug, I expressed my concerns to my husband about what would happen if there was an emergency in the middle of the night and I was laying in bed paralyzed from Xyrem. After all, earthquakes happen at all hours of the day and night, not to mention house fires and other crazy things. How do you call for help or get out the door (or window as the case may be) when you are unable to move?

My husband said to me, "They must only give this drug to someone who lives with another person, since you are paralyzed for 4 hours after you take it."

"No, " I replied, "I met someone who was single who was given the drug."

How does this make any sense? Give me a benzodiazepine PLEASE before you start prescribing this kind of madness. I mean, come on. Sure, Xyrem might not be habit-forming, but who in their right mind willingly submits to taking this medication?

I cannot do it. I have too many problems as it is with medication side-effects; I cannot fathom the torture it would be to lay helpless for 4 hours unable to do anything about them. I have images of Jim Morrison's final hour in my head.

I am desperate for a night of lovely, deep, restorative sleep ... but I haven't lost my mind just yet.

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