Tuesday-Newsday #53

It’s time for Tuesday-Newsday! The featured blog post this week is “10 Things I Want You to Know About Working While Living with Chronic Illness” by Rosalind Joffe of The Chronic Illness Career Coach. 

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. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

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*CHRONIC PAIN

New 'barcode' tool lets doctors evaluate chronic pain quickly and objectively

To tame chronic pain, erase brain’s memory

PAIN Rx

Short-Acting Opioids May Have Less Impact on Testosterone

CBT Rehab Tackles Chronic Pain, Drug Abuse At Same Time

PATIENT NEWS

Medical I.D.’s vs. Tattoos: A small number of Americans are getting medical tattoos as a permanent way to give rescuers important details about their medical conditions, instead of wearing an I.D. bracelet.

Virtual Reality Used to Treat Real World Ills

MIGRAINES

Migraines linked to depression in women

OnabotulinumtoxinA for Chronic Migraine: Latest Evidence

Study Links Colic in Infants to Migraines in Moms: Mothers with chronic headache condition more than twice as likely to have babies who cry excessively

Online Program Can Ease Migraine Pain

BACK PAIN

More than 40% of individuals presenting with axial spine pain also may meet fibromyalgia criteria

Pilates may be as good as regular exercise for low back pain

New Treatment for Chronic Pain after Spinal Cord Injury

Epidural Steroid Injections Do Not Benefit Spine Patients

New Technique Improves on Results of Spinal Cord Stimulation for Back Pain

*WORKING WHEN YOU HAVE CHRONIC PAIN

Working: 10 THINGS I Want You to Know About Working While Living with Chronic Illness

by Rosalind Joffe of The Chronic Illness Career Coach

One Year Anniversary: Revisiting My Best Posts

A year ago I decided to start a blog to help others with chronic pain. I didn’t know if physically I could keep it up or if anyone would read it. Here we are now, I’ve created more than 100 blog posts and I’m continuing on! My goal has been to help just one person in their struggle to live with chronic pain - and I think I have done that. My goal for my second year is to double my Followers and get more comments each week. Please spread the word to those in pain about Nip Pain in the Bud!

To those of you who support my blog: Thank you!  I’d love to hear from you when you feel moved by or helped by anything I write. I sure hope a year from now I’ll still be going strong!

Now, I’m going to share my favorite posts from my first year. If you missed reading them the first time, these are the ones you definitely shouldn't miss. They are full of vital information to benefit your health, to assist you in managing your pain, and to help you cope with all the struggles chronic pain/illness can bring. You may even want to bookmark some of them to save the links for future use. Thanks again for your support! 

~* MEDICATIONS *~

I’ve written several very important blog posts about Medication Safety and being an informed patient. Here are the ones I think should be required reading for your whole family, whether they have chronic pain/illness or they are healthy:

*Medication Safety: Check & double-check to save your life (part one)

*Medication Safety: Prevent Drug Interactions (part two)

*Medication Safety: A Clean Sweep (part three)

*Protect Yourself from Your Own Medications

*Be An Educated Patient: Understanding Your Meds

~* PAIN MANAGEMENT *~

Of course, I’ve written a lot about chronic pain in the past year. These are the three I felt have the most helpful information:

*Preparing to Meet With a New Pain Doctor

*Pain Management: Strive for the right mix of elements

*Pain Crisis Plan: your handy weed-killer

~* SEEKING A DIAGNOSIS *~

It’s so hard when you have no diagnosis, trying to find the right treatment and manage your pain. Here are the best posts I wrote on how to seek a diagnosis:

*Quest for Diagnosis: 7 Tips to Navigate the Maze

*Quest for Diagnosis 2: When You Can’t Find Any Answers

*Clinical Trials - Could they help you?

~* MY PERSONAL STORY *~

I’ve shared a lot about my own personal struggles with chronic pain and illness in the past year, including some of my own journal writings and poetry. I hope by reading these posts, anyone who is going through the same issues will take heart, and see by own example that you can get through the hard times by holding on to hope with all your might:

*Taking a Swing at Life’s Unexpected Curveballs

*Faith Renewed by More than Coincidence

*Recovery: My poem of hope

*Turning the Kaleidoscope to Set Your Phoenix Free

*Letting Truth, not Fear, Guide Your Perspective

~* OTHER POSTS I WANT TO SHARE *~

There were so many blog posts for me to choose from, but I just can't share them all. These last few I just couldn't leave out!:

*Resistance to change: What is holding you back?

*Don’t Isolate Yourself

*Make Your Life a Fantastic Ride!

*"It is better to look good than to feel good" ... say what?

*Absorb Your Environment

*The Traveling Red Dress: Having My “Moment”

Tuesday-Newsday #52

It’s time for Tuesday-Newsday! The featured blog post this week is “Life Redefined: Grieving Forward” by Joanna Isbill from the site DearThyroid.org.

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. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

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*CHRONIC PAIN

US Senate Addresses Chronic Pain in First Hearing

Sexism in Chronic Pain Treatment? Female patients accuse doctors of downplaying their complaints

Report Claims Drug Testing for Painkillers Motivated by Profit

Chronic pain: 1 in 3 suffer, study says

*PAIN Rx

Continuing Methotrexate Shortage Has Many With Rheumatoid Arthritis Concerned

Amid Rx shortages, rules force hospitals to trash scarce drugs

Killer Combinations: You need to be aware of drug interactions, and some may be surprising

part 1    part 2

I wrote a blog post last year on all types of Drug Interactions which you can read here: Medication Safety: Prevent Drug Interactions

Implanted Microchip Might Be Future of Drug Delivery

FDA Clears Implantable Pump for Morphine

Be Aware: New Pain Laws pending across the country that you need to know about

Make your political representatives hear your concerns. Be willing to speak up in an email, call, fax, or sign petitions when the time comes to act before a bad law is passed. Protect your rights!

*FIBROMYALGIA 

Pain Negatively Affects Cognition in Fibromyalgia

Guidance for Fibromyalgia Patients Who Are Having Elective Surgery

Obesity Linked to Worse Fibromyalgia Symptoms

New issue of Fibromyalgia & Chronic Pain Life available

*SICKLE CELL ANEMIA

Cord blood transplant cures Sickle Cell girl

Carbon monoxide-based sickle cell treatment to be tested 

*COPING WITH CHRONIC PAIN

Life Redefined: Grieving Forward

by Joanna Isbill of DearThyroid.org

Critical Medication Shortages & New Laws for Pain Drugs: What Pain Patients *Need* to Know

There’s a lot happening right now in the United States with regard to the medications used by pain patients. It’s important that we are all aware of what’s going on and we know what we can do about it.

~* DRUG CRISIS: THE METHOTREXATE SHORTAGE *~

The supply of injectable Methotrexate, a drug used to treat adults with rheumatoid arthritis and a strain of childhood leukemia, could be running out within weeks. You can read about the critical shortage in an article by the New York Times HERE. 

The FDA says it is cautiously optimistic that fresh supplies of the drug are slated to be released this month, but doctors are worried some patients’ care will be interrupted and compromised.

What can patients with painful rheumatoid arthritis do? Check now with your doctor and find out how much Methotrexate your doctor can access. Ask if there is another biologic you could take. Get talking with your treatment team about what other options you might consider. And if the FDA is right, you may not really have anything to worry about.

WHAT CAN YOU DO IF A DRUG YOU TAKE HITS A CRITICAL SHORTAGE 

What should you do if a medication you rely on for your treatment suddenly is not available? Here’s what the Harvard Health Blog says:

“If your doctor recommends a drug that is in short supply, ask about other medications that might work for you. Your doctor may be able to find something equally tolerable and effective, perhaps in a different class of drug. If there aren’t any alternatives, your doctor, working with a pharmacist, may be able to track down a supply. When a medication is in short supply be especially wary of Internet or faxed advertisements for alternatives (often highly priced and sometimes counterfeit).”

WHAT’S UP WITH ALL THESE DRUG SHORTAGES?

In 2010 there were 178 drug shortages and this year that number is rising above 265 so far. These scarce medications are used for anesthesia, pain, heart treatment, ADHD, central nervous system conditions, infections, and more.

Why is this happening? There are numerous reasons, including an increase in demand, shortages of ingredients, problems with quality control, other manufacturing problems, and the business decision to stop making older drug that aren’t as profitable. 

You can read more about drugs shortages and what the FDA is trying to do about it, by going here:

~How drug shortages happen

~What's Behind Our National Drug Shortages?

~* NEW DRUG LAWS PENDING THAT COULD AFFECT US *~

Since last year, I have been championing all anti-Fail First legislation across the country (if you don’t know about Fail First, click HERE). However, there are many other laws which can more directly affect us as pain patients, as evidenced last year in Washington State - which totally  scares me when I read about it.

This week I got an email alert from the Reflex Sympathetic Dystrophy Association warning me about pending legislation in other states, particularly New Mexico and Florida. If you go to their Action Alert Page there’s a map showing the entire country. When you click on your state it reveals what laws are being voted on which could directly affect your access to pain medication.

Don’t turn a blind eye and think that you’ll always be able to get your meds with no problem. We need to remain vigilant so our rights are protected. When an unfair bill is pending, make sure your voice is heard by your political representatives. Be willing to speak up in an email, call, fax, or sign petitions when the time comes to act before a bad law is passed. 

We all have to stand up as pain patients and be heard!

Tuesday-Newsday #51

It’s time for Tuesday-Newsday! Don’t miss the advice-filled piece, “Travelling a Rocky Road?” by Jan Sadler of the PainSupport Newsletter.

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. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

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*PAIN Rx

Generic Drugs Easing Out-of-Pocket Medical Costs in U.S.

Experts Warn Illicit Drugs Bought Off Internet May Be Poisons: Case report says victims thought they'd ordered amphetamine, but got drug that turned their skin blue

Pain Patch Rejected for HIV Neuropathy

*PATIENT NEWS

Many Doctors May Be Less Than Honest With Their Patients: Survey Finds Some Docs Not Truthful About Patients' Prognoses, Unwilling to Disclose Mistakes for Fear of Lawsuits

TSA Launches Helpline for Travelers with Disabilities and Medical Needs

The Transportation Security Administration (TSA) has launched TSA Cares, a new helpline number designed to assist travelers with disabilities and medical conditions, prior to getting to the airport. Call TSA Cares toll free at 1-855-787-2227 before traveling with questions about screening policies, procedures and what to expect at the security checkpoint. Click the headline to access the website for more info.  

*OSTEOPOROSIS

Heart Failure, Osteoporosis Go 'Hand-in-Hand': Cardiac condition raises the risks of falls and may contribute to bone-density loss

Vitamin D Helps Bone Health Only With Calcium: Report

Some Women Can Go Longer Between Bone Checks: Study

Stopping Bisphosphonates Cuts Risk of Second Thigh Fracture

*MISCELLANEOUS CONDITIONS

DIABETES: Saliva Test Could Replace Blood Testing 

JUVENILE ARTHRITIS: Kids & young adults with it have higher cancer risk

LUPUS: Genes May Give Clues to the Severe Form

LYME DISEASE: Ultimate Map Tracks High Risk Areas

PERIPHERAL NEUROPATHY: Many Docs Use Costly MRIs to Diagnose But Cheaper Tests are Effective, Researchers say

PSORIATIC ARTHRITIC: Early, Aggressive Treatment May Help Reduce Symptoms And Improve Joint Function

TENDON DISORDERS & SOFT TISSUES INJURIES Respond to Combo Treatment

TRIGEMINAL NEURALGIA: Cyberknife Radiation Treatment Successful

*LIVING WITH CHRONIC PAIN

Travelling a Rocky Road?

by Jan Sadler of PainSupport.co.uk

The Traveling Red Dress: Having My “Moment”

We all know the story of the “Sisterhood of the Traveling Pants” - four friends take turns sending a special pair of jeans back and forth, keeping connected as their lives change.

This week as I was searching around the web looking for news and great blog posts to feature, I came across something that completely captured my attention. Jenny Lawson, of The Bloggess, posted a special piece called “The Traveling Red Dress” in which she wrote:

“I want, just once, to wear a bright red, strapless ball gown with no apologies. I want to be shocking, and vivid and wear a dress as intensely amazing as the person I so want to be. And the more I thought about it the more I realized how often we deny ourselves that red dress and all the other capricious, ridiculous, overindulgent and silly things that we desperately want but never let ourselves have because they are simply ‘not sensible’.”

“Things like flying lessons, and ballet shoes, and breaking into spontaneous song, and building a train set, and crawling onto the roof just to see the stars better. Things like cartwheels and learning how to box and painting encouraging words on your body to remind yourself that you’re worth it.”

“And I am worth it.”

Jenny got to wear that special red dress, and posted the photos along with that blog post. She writes that it was everything she thought it would be. And then she got the idea to send the dress on a trek around the country:

“...the red dress will begin a journey traveling from city to city so that other people can wear it and love it and feel as special and vivid and dynamic as they already are. Because sometimes we all need a little red dress to remind us of that. So today, think about what it is you need and were too embarrassed to ask for... Find your red dress. And wear the hell out of it.”

Jenny's words struck a chord with the online community. There’s now a Facebook page for the Traveling Red Dress where women are sharing their stories and are asking for a red dress to be sent to them. Others are donating dresses to the cause and mailing them out wherever they are needed. There are even photographers offering free ‘red dress sessions’ to be a part of whole phenomenon.

When I read about all this, I felt a strong pull to join. Things have been tough for me lately and the idea of being a bit outrageous and fanciful really spoke to me. I realized that I need that boost of spirit a ‘red dress moment’ could bring to me.

Here is my red dress!
I can't wait to wear it for my photo shoot.

About a week ago I posted a desperate request for red dress on the Facebook page. A few days later, completely unplanned, I stopped at a Thrift Store. As I walked to the register with my purchase... there was my fantasy dress! It's not a true red; it's more of a faded brick red in a long, 1930's style - the sort of dress that Ginger Rogers might wear. It's even floor length on me (I’m six feet tall) which is very unusual to find second hand. The best part was it only cost me $10! 

I’m planning right now for my own red dress photo shoot. As I am such a garden-loving person, I want to have flowers be a part of it but it’s not exactly the right time of year to find blooming plants. I’m giving it some thought. I still need to find a photographer and I'm hoping I'll be lucky enough to find one that will donate their time, as have others on the Facebook page. If everything comes together, I hope to have my photo shoot done before the end of March and I promise I’ll post a couple pictures to share my 'red dress moment' with all of you.

Do you need a ‘red dress moment’? You too can join in the legacy of the Traveling Red Dress. Follow the links below to learn all about it, to see beautiful red dress photos, and to be a part of it all. Embrace your self-worth and show it to the world!

~* See all the Traveling Red Dress links & photos *~

~'Traveling Red Dress' Movement Proves Social Media Foundation Is Still People, Empowerment  

~The first Red Dress blog post 

~The 2nd Red Dress blog post  

~The Traveling Red Dress Facebook page 

*UPDATE*: 

See the completion of my Traveling Red Dress Journey -with the final photos- by clicking below:

*Update on My Red Dress Moment...

photo shoot!: *Unveiling My ‘Traveling Red Dress’ Experience

Tuesday-Newsday #50

Today’s Tuesday-Newsday is my 100th Blog Post! I hope I’ve helped inform and inspire everyone who has visited my site!

UPDATE on Fail First for Californians: We did it! Thanks to your help, the anti-Fail First bill has cleared the first hurdle and will now go to the Senate Health Committee, where it will be heard sometime in May. I will let you all know when your support is needed again. If you aren’t familiar with Fail First, go HERE.

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. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

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*CHRONIC PAIN

Massages Scientifically Proven To Help Reduce Pain

Study Finds Good Intentions Ease Pain, Add To Pleasure

Time to Face the Pain: Patients Suffer in Countries With No Pain Care

If you want to help people suffering for lack of pain relief in other countries, sign the MORPHINE MANIFESTO. Your signature will convey to government officials, health care workers, and the pharmaceutical industry that steps must be taken to guarantee the accessibility of immediate release morphine at an affordable cost.

*PATIENT NEWS

Blood Test May Help Diagnose Depression

Patients' Perceptions Of Illness Make A Difference

*FEMALE PAIN CONDITIONS

New European pill works against uterine fibroids

'The Pill' Can Help Ease Period Pain, Study Finds

A new way of identifying which bacteria are causing an attack of cystitis could mean curing the infection faster

New test for endometriosis

Gene mutation discovery sparks hope for effective endometriosis screening

'Top Chef' Host Padma Lakshmi On Dealing With Her Chronic Pain From Endometriosis

*AUTOIMMUNE DISEASES

More Known About Proteins That Cause Autoimmune Diseases: Researchers say 'autoantibodies' can cause lupus, diabetes, arthritis

Pulmonary Embolism Risk High in Autoimmune Diseases

2-Year Study Finds Gardasil Does Not Trigger Autoimmune Conditions After Vaccination

Hidden autoimmune disease often prevents wound healing

Controversial Stem Cell Transplant Helps Woman with Three Rare Autoimmune Diseases

Study Shows How Stress Triggers Immune System: Conflict fires up molecules related to inflammation, researchers report

*MANAGING YOUR CHRONIC PAIN

Healing Your Chronic Pain And Finding Relief (Part 2)

by Gabrielle Gawne-Kelnar of TheTherapistWithin

Preparing to Meet With a New Pain Doctor

(I just realized that this coming Tuesday-Newsday will be my 100th blog post! Wow! I can't believe I will also celebrate my blog's one year anniversary at the end of this month. I'm planning that weekend to share my favorite posts from my first year. Thank you all for supporting my blog!)


So it’s official... I am now enrolled in a different health insurance coverage. I haven’t yet gotten possession of all my health records from my old HMO so I’ve put off choosing a new doctor(s) until I have what I need.

However, it’s important that I don’t just sit on my hands and wait. There are a lot of things I can do to help make a smooth transition to a new doc with just a little work. This week I’ll focus on one aspect: preparing to discuss my pain. 

I’ve been looking around the web seeing what I can find to aid me in accurately conveying the level of pain in my life. I’ve found a lot of great options which you may also find useful.

QUALITIES TO LOOK FOR IN A PROVIDER

Make sure you find a healthcare provider with whom you feel comfortable. He/she should:

• Know about chronic pain and how to treat it.

• Believe your report of pain.

• Listen carefully to your concerns.

• Ask you questions and perform diagnostic tests to help identify the problem.

• Encourage you to ask questions.

• Be comfortable when you disagree.

• Be willing to speak to your family or friends if you are not feeling well.

• Work with you to develop a pain management plan that helps reduce your pain and sets realistic goals.

• Provide detailed information about risks and benefits of each pain treatment option that is recommended.

• Tell you when he or she does not know something about your pain problem or treatment


PREPARING FOR YOUR APPOINTMENT

If you go into the appointment with your pain doctor with all your records and a plan, you will have the best chance of feeling "heard" and be set up for successful treatment. Here's a link to help you with that: ~Getting the Best Out of Medical Consultations

~* TOOLS TO HELP TRACK YOUR PAIN *~

PAIN LOGS

If you aren’t already, you should be tracking your pain on a daily basis. If you have pain all the time like I do, I just write down the episodes that are above my normal daily pain level to show how it differs during the day. Here are two pain log forms you can print out and use, or you can search online for log you prefer, or even draw up your own that is specific to your issues.
Log 1     Log 2     

When you are tracking your pain, it can also be beneficial to use the 
L-O-C-A-T-E-S  Scale from the APF:

L:  Location of the pain and whether it travels to other body parts.

O:  Other associated symptoms such as nausea, numbness, or weakness.

C:  Character of the pain, whether it's throbbing, sharp, dull, or burning.

A:  Aggravating and alleviating factors. What makes the pain better or worse?

T:  Timing of the pain, how long it lasts, is it constant or intermittent?

E:  Environment where the pain occurs, for example, while working or at home.

S:  Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

PAIN APPS

I’m not a techie person, but I can’t deny that being able to track your pain instantly wherever you are on your phone is a great thing. With a quick search, I found a few pain apps online; I cannot recommend any of these personally so definitely do a little research and check their reviews. My husband put the first one on my Android phone and I’m hoping I can learn to use and get comfortable with it. If you are using a pain app you think is great, please write about it in the comments section below. 

~Manage My Pain Lite

~My Pain Diary

~Pain Care

PAIN ASSESSMENT & INTERVIEW

It’s been such a long time since I’ve seen a new pain doctor (11 years!) I can’t recall exactly what questions I might be asked and what descriptions and history are the most important for me to include. To that end, I found two forms to help me prepare, so I can be concise and accurate. You can check them out here: 

~Pain Inventory

~Comfort Assessment

All these links and information are certainly helping me to prepare for meeting the new pain doctor I’ll be choosing soon. I hope you’ve also found valuable resources, and don't forget your rights...

~* PAIN  CARE  BILL  OF  RIGHTS *~

As a Person With Pain, You Have a Right To:

• Have your report of pain taken seriously and be treated with dignity and respect by doctors, nurses, pharmacists, social workers, physician assistants and other healthcare professionals.

• Have your pain thoroughly assessed and promptly treated.

• Participate actively in decisions about how to manage your pain.

• Be informed and know your options; talk with your healthcare provider about your pain – possible cause(s), treatment options and the benefits, risks and cost of each choice.

• Have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.

• Be referred to a pain specialist if your pain persists.

• Get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose.