dahlia in my garden: Rio Fuego in Coleus leaves

Saturday, March 2, 2013

Shocked & Awestruck: Pain Patients Blocked from Meds

I am totally and utterly shocked. Yesterday I had to contact six different pharmacies to get my medication - and I was beginning to worry I wouldn’t find which would fill my prescription. Though I’ve heard horror stories from pain patients around the country, I was completely unaware of how bad things have gotten for pain patients in my state. Let me explain:

Our insurance was switched (again) with only 15 days notice as of the first of February. I had to find a new internist and get my pain medication refilled before the end of the month. I spent two weeks trying to find a plan-approved doctor who was accepting patients. At last, I finally found one I felt could be a good match for me. I went to the appointment, established my relationship with the new doctor, and got my Rx scrip.

I have to step back a moment and talk about my past healthcare. I was born into HMO coverage where I remained a member for 40+ years. When my genetic disease and chronic pain manifested in my late 20’s, I never had any difficulty getting my pain medication. The first time my insurance switched, I began using a mail order pharmacy and again, I had no problems with ordering and receiving my medication. Starting out on this newest insurance, I called to find out what pharmacies were on my plan, made a list, and decided where to go. I never expected to have an issue. 

I was completely wrong. 

The next day I dashed over to the closest retail pharmacy on the list. I waited my turn, handed over my scrip, and was told they were out of my pills. I asked them if they could order it. 

I was told by the pharmacist, “We only receive a certain amount of opioid medications each quarter because the DEA keeps tight control. When we are out, then we are out.” 

I asked what day they would be restocked and I would come back. He told me he wasn’t allowed to give out that information. I asked him what a patient with a legitimate prescription, who will go through with withdrawal without their medication, should do? 

In a dismissive tone he said, “Try another store.”

I called or visited six different retail pharmacies in an effort to find one who had my pills in stock. Each time the answer was the same. “We are currently out. I do not know when we will have more. I am sorry.”

As a pain patient who has never once abused her medication, never given even one pill to a family member, who keeps her painkillers secure in a safe, who follows her pain management treatment plan faithfully, and has never given any of her doctors a reason to doubt her veracity... I ended up having to zig-zag across my metro-area becoming more and more anxious. After several hours and two more calls to my insurance to try to find another option, I finally got lucky. After first being told they couldn’t fill the whole prescription, on second look, the full amount was found.

© Ray22 | Dreamstime Stock Photos & Stock Free Images

I’m a chronic pain sufferer who is trying to do the best I can. In the primary onset of my genetic illness it was so painful that I became depressed, stopped eating and became anorexic, and my existence was limited to being curled in the fetal position in my recliner. Being put on my pain medication by the National Institutes of Health Palliative Care Team gave me back a chance to have a life. Although my husband was at first upset about me being on an opioid medication, after three days of watching me and seeing how my whole demeanor changed, he said, “It’s like having my real wife back again.”  I’m now in the swimming pool seven mornings a week doing my deep water exercises, I’m also doing intensive physical therapy two days a week with the therapist and every day at on my own at home, as well as paying out of pocket for acupuncture. I am doing everything I can to manage my pain, not relying just on painkillers. You can read about how I manage my pain and consider ideas for your own care by clicking here: Pain Management: Strive for the right mix of elements.

I’m definitely not alone in this. A friend of mine’s son was working underneath a car when it fell on him. He was rescued and rushed to the hospital. When he was discharged from the hospital with many broken bones, he was on opioid medication, and they planned to stop at store to fill the prescription on their way home. Like me, they could not find a retail pharmacy with his pills available. My friend had to drive 20 miles, hopping from store to store, to find one with his meds.

Can you imagine anyone coming out of the hospital and having to go through withdrawal? After surgery? With terminal cancer? How can anyone setting policy: DEA, FDA, politicians, or whoever, think that having a set amount of medication provided to each retail pharmacy is going to solve any kind of addiction/overdose problems in society? What would they say if it was their mother recovering from a mastectomy or their son suffering third-degree burns from a work-related accident?

Why are all pain patients viewed with suspicion, lumped in with addicts and criminals? It’s awful to hear about people who overdose, however, making a sweeping decision that opioids are “bad” and then blocking them from thousands of patients who use them legitimately, safely, and with great success is only going to make the situation worse. Where is the compassion for us? 

In past blog posts, I’ve talked about my fears that California could end up like Florida (read this and this), Washington (read here and here), and New York (read this) where legitimate pain patients are struggling to get access to their pain medications or to even find a doctor who will prescribe for them. 

If you are a chronic pain patient who has had a similar experience to mine, you definitely need to read this article: Is the War on Pain Patients a Human Rights Violation?

What am I going to do next month? Am I going to have to end up driving 20, 30, or 50 miles to get my prescribed medication? Maybe I can try the mail-order option under this new insurance, but now I’m worried about it, too. And as we all know, stress and worry amp up our pain levels like nothing else.

Tuesday, February 26, 2013

Tuesday-Newsday #102


Time for Tuesday-Newsday! The Featured Blog Post this week is,Attitude is half the battle when you’re sick,” by Elaine Waples for www.kevinmd.com

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below. 

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*MENINGITIS OUTBREAK NEWS 





*CHRONIC PAIN NEWS







*OSTEOPOROSIS

But the panel's recommendations apply to specific dosages and patients















*MULTIPLE SCLEROSIS















*PHANTOM LIMB PAIN




*LUPUS









*FEATURED BLOG POST

by Elaine Waples for www.kevinmd.com

Saturday, February 23, 2013

Dialing Up Your Future Healthcare


It’s amazing how far technology has come in the last fifty years - even more stunning is how fast it has been moving forward in just the last five. One device which has become ubiquitous in our society could be the true future of our healthcare: the smartphone. 

The simplest way we use our phones for more than calling is through all the great applications available to us. According to this article, “There are over 10,000 health apps in the iTunes app store, the number of Americans using smartphones for health information grew from 61 million to 75 million this year, and 88% of doctors would like patients to monitor their health at home.” Many people use apps for weight loss or fitness goals, but there others that give us, particularly as patients with chronic pain/illness, a chance to report in the moment when we are having pain, what it feels like, how and where it’s affecting us, and much more. The chronic pain management app I use is called Manage My Pain. It takes down my description of all those things, organizes any notes I’ve made, analyzes my responses to create graphs and stats, and makes it super easy to print out a complete report for my doctor. Having all this detailed information is particularly useful in determining how your treatment plan is working or whether it needs to be altered.

An app like mine can reveal so many specific details as opposed to the patient who vaguely tells the doctor their pain level is an “eleven and it hurts all the time”. There are also apps designed for particular conditions like migraines, arthritis, and diabetes as well as ones that focus entirely on chronic pain. (*See below for a few apps you can download to your smartphone to help manage your pain).


I’m not the only one who thinks this is a great option for tracking and treating pain. Just this week I discovered a study, Chronic Pain Sufferers Can Benefit from Smartphone Apps. This study divided 140 women into two groups, one with smartphones and one without. Researchers say the smartphone group reported less pain than the control group that didn’t use a smartphone app. Click on the name to read more about the results.

Before I move on, there is a free app I found which I want to feature: MediSafe Project. Taking your medication as prescribed and on schedule is vitally important for all patients. However, for some, like diabetics and heart patients, it can be a matter of life and death. A missed or delayed dose could have dire circumstances. An app called MediSafe Project was designed as the first-ever cloud-synced pillbox app that not only reminds you when it’s time to take your medication, but also sends your family, friends and caretakers alerts if you miss a dose, leveraging the power of your support system to keep you healthier. It’s a free app for iPhone and Android. I think this sounds like a great option, and I suggest you might want to make a note of it. Who knows if you, or a loved one, may have need of just such a helpful app in the future?

Technology keeps marching ahead, and though apps are fantastic, our smartphones are becoming even more useful for our health. Cardiologist Eric Topol, chief academic officer of Scripps Health, believes “the smart phone will be the hub of the future of medicine. And it will be your health-medical dashboard.” 

In an in-depth interview with NBC news, Dr. Topol talks about how wireless medicine via smartphone will make our healthcare better and cheaper. During the interview, he shows how his modified iphone makes it possible for him to take an instant cardiogram of a patient and do a portable ultrasound. Says Topol, 
     “You can take the phone and make a lab on a chip. You can do blood tests, saliva tests, urine tests, all kinds of things... through your phone. This is a powerful device.” 
I highly recommend that you watch this entire interview. It is mind-boggling to see just how much he can do with a smartphone and to hear him talk about what’s to come is incredible.

Two years ago, I started having issues with my heart. I wore a heart monitor for a week, but the problem I was having didn’t happen while I was wearing the monitor. I then had to wear a holter monitor for a whole month in order to make it possible to catch my heart acting up. It was uncomfortable, inconvenient, and expensive. Evident through Dr. Topol’s demonstration, I could have my smartphone handy and simply pull it out to record any episode when my heart rhythm was off and not have to be hooked up to a monitor all the time. I could then transmit the information instantly and if there was any life-threatening issue my doctor would be able to tell me what to do. That immediate connection to a medical professional proves, according to Dr. Topol, technology does not get in the way of the doctor/patient relationship. It may involve being face-to-face less often since a lot of office visits would be unnecessary by doing the screenings and tests remotely, saving money, time, and making diagnosis much more immediate. But he says it would be more intimate and bonded because the results of the tests are shared between doctor and patient in real time. 

I have to admit, I certainly look forward to this type of medicine with individualized screenings, remote testing, and instant connection. I never want to have to wear a heart monitor for a month again! Watching Dr. Topol talk about how wireless medicine is going to change our healthcare system really excites me. Who knows how much more technology will advance in another five years?

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*Chronic Pain Applications plus one other app you might find useful

There are certainly more than three apps out there for chronic pain, but these are the ones I have heard good things about from other users besides the one I use myself. I also included one emergency app which sounds like a good idea for those of us with very serious medical conditions; it goes a few steps farther than a medical alert bracelet, though I always recommend having one of those no matter what. Consider using one of these apps to help improve your life by better managing your chronic pain:

~Manage My Pain (the one that I use)
This app has helped thousands of people better understand their symptoms and provide evidence of their pain for their doctors, insurance companies, or government agencies. It is the most effective pain management app to record, track, analyze, & share your pain. Manage My Pain is the only app that synchronizes your information in the cloud and across all your devices. Create and view your records anywhere, anytime, and from any device, while resting easy that your information will never be lost.

This app helps people with chronic pain conditions make daily health and wellness choices, so they can manage their pain smarter. From back pain to migraines, the app lets you record daily pain levels, export your pain history to PDF and email it to your doctor. You can also select doctor-approved goals from five lifestyle categories related to your pain condition(s): Food, Rest, Exercise, Mood, and Treatments, view ‘bite-sized’ tips matched with your goals and organized into the same five lifestyle categories, and read hundreds of articles, videos, slideshows and quizzes on pain management related to your condition.  Free.

Developed by a chronic pain patient and used by thousands to track chronic health conditions such as: Fibromyalgia , Headaches, Migraines, Back Pain, Rsd, Rheumatoid Arthritis, Osteoarthritis, Interstitial Cystitis, Herniated Disks, Endometriosis, Peripheral Neuropathy, Lupus, Ankylosing Spondylitis and dozens of others. All with one app! It provides you with a tool that is easy to use, empowering, and effective at tracking and recording your chronic pain, pain types, pain triggers, remedies, etc.

This app is a vital tool for unexpected situations and the easiest way to aggregate all of your most critical information. Store your blood type, allergies, medications, any notes, and emergency contacts — if your phone is found on you, emergency technicians will be able to view your vital stats in a heartbeat. A personalized large tile increases visibility on your start screen, while a personalized lock screen displays emergency contacts even if your phone is locked. Emergency Kit outperforms standard ICE (in case of emergency) kits because of the assortment of tools and educational information also included. Turn your phone into an SOS light beacon, send out an emergency text message or email with your GPS coordinates, or learn how to treat different injuries. Emergency Kit offers an added layer of preparedness for unpredictable situations.

Tuesday, February 19, 2013

Tuesday-Newsday #101


Time for Tuesday-Newsday! The Featured Blog Post this week is, 38 Questions to Ask Your Surgeon Before Having Back Surgery,” by Stephanie Burke for Spine-Health.com. Although this article is written specifically for those who have spinal issues, the information provided could be helpful to patients who are facing any type of surgery. 

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below. 

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*MENINGITIS OUTBREAK NEWS 

Current Count: 704 Cases, 46 Deaths, Joint Infections 32
(these numbers were not updated this week because of the holiday)




*MEDICATION NEWS

Researchers are calling for diclofenac to be removed from national essential medicines lists and to have its global marketing authorizations revoked.

Vioxx and Diclofenac: Why Are Two Heart Risky Pain Drugs Viewed Differently?

Patients who take Vicodin and other painkillers containing hydrocodone will not be able to get them refilled starting Saturday unless they go to their doctor for a new prescription








*CHRONIC PAIN NEWS




Although apologetic for disappointing fans and unable to continue performing (let alone just walk), with humor she gives her wheelchair a name



*PATIENT NEWS










*FOOT PAIN





*PEDIATRIC PAIN











*FEATURED BLOG POST

Although this article is aimed at those with spinal issues, the information could be helpful to people with other conditions who are facing any kind of surgery:

by Stephanie Burke for Spine-Health.com

Tuesday, February 12, 2013

Tuesday-Newsday #100

Note: Sorry for the slightly late post. I have returned from my trip and am getting back into the swing of things.


Wow! This is my 100th post of Tuesday-Newsday! When I started this blog I never thought I'd make it this far. I hope you are finding the information & ideas on my blog educational and occasionally inspiring. Another landmark is coming up soon for me as well: my blog will celebrate its two-year anniversary on February 26th. I hope I can continue to maintain this blog far into the future and provide hope & help to many more people. I love to hear from those who read my blog, so if you feel inclined, please leave a comment.

The Featured Blog Post this week is, “How to Take the High Road (When Your Doctor is Mean)” by Lisa Copen of RestMinistries.com

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below. 

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*MENINGITIS OUTBREAK NEWS 








*CHRONIC PAIN NEWS







*MEDICATION NEWS












*PATIENT NEWS









*AUTOIMMUNE DISEASES








*NECK PAIN






*FEATURED BLOG POST

by Lisa Copen of RestMinistries.com

Friday, February 1, 2013

ALERT: Tell the FDA How Your Life Will Be Impacted by Restrictive Rx Changes


A week ago an FDA panel voted to tighten restrictions on pain medications containing Hydrocodone, making the rules for getting it the same as for morphine and oxycodone. This includes medications such as Vicodin, Lortab and Norco. The FDA is also being lobbied by a physicians’ group to severely cap access to opioid medications (including a set maximum daily dose) for patients with chronic non-cancer pain. 

[For more details about these two important issues, see the email from the National Fibromyalgia & Chronic Pain Association (NFMCPA) linked HERE]

The FDA will be meeting this coming Monday, February 4 with regard to these matters. It is *vital* that you share your concerns and personal stories; they need to hear directly from people who are in chronic pain. They need to understand how the specific restrictions being considered will impact the quality of your daily life.

To make your voice heard before any decisions are made, please act quickly. Go to this PAGE and click on bar in the upper right hand corner that says “Comment Now!” Follow the instructions when you reach the new page and provide your story. Be as specific as possible as to how these proposed changes would impact you. Please take the time to do this, even if you only write a couple of paragraphs. 

I believe we all have the right to expect that what our doctor thinks is best for us should be allowed, and politicians and negative press should not dictate our medical care. We should not be allowed to suffer because there are addicts and criminals who abuse medications - we are not the cause of it nor will they stop if we are cut off from our legitimate prescriptions. It is unfair, unethical, and cruel to tell us that even though there are medications which can improve our lives and alleviate our pain, we are not allowed to have them.

PLEASE read the specifics about the FDA issues to be discussed at that meeting next week, and then tell them your story. 

The NFMCPA also requests that you send a copy of your story to them at info@fmcpaware.org to help combine our efforts with theirs.

We, as chronic pain patients, must now more than ever stand together.

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Articles & editorials you should read on these FDA issues:



(from the Los Angeles Times)

Tuesday, January 29, 2013

Tuesday-Newsday #99


NOTE: I will be out of town for more than a week, so my blog will not be active in that time. I’m sorry to say it includes at least one Tuesday-Newsday. If I'm feeling good and my pain is under control when I return from my trip, I will do my best to post again by 2/12. Take care!


Time for Tuesday-Newsday! The Featured Blog Post this week is, “Talking to Our Spouse About Our Illness: How Much is Too Much?” by Lisa Copen of RestMinistries.com

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below. 

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*MENINGITIS OUTBREAK NEWS








*MEDICATION NEWS












*ALL ARTHRITIS







*RHEUMATOID ARTHRITIS

see Facebook page for the campaign












*OSTEOARTHRITIS












*JUVENILE ARTHRITIS (JRA / SJIA)







*FEATURED BLOG POST

by Lisa Copen of RestMinistries.com