dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, January 31, 2012

Tuesday-Newsday #49

Time for Tuesday-Newsday! I hope you find helpful information among the articles I posted today. Don’t miss the very passionate and thoughtful blog post by Annie of TraumaDolls titled, “Dangerous Panic Indeed: Why the Media is To Blame for Prescription Drug Abuse Hysteria.”

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





*PATIENT NEWS




*MULTIPLE SCLEROSIS





*CANCER





*MILITARY VETERANS & CHRONIC PAIN - PTSD






*STUDY SEEKING RSD/CRPS PATIENTS

The Reflex Sympathetic Dystrophy Syndrome Association has launched an Internet-based study entitled: Long-term Health Effects of CRPS. Anyone with the diagnosis of CRPS Types I and II can participate. Here’s where to get started: Go to Survey
For questions or more info, contact the RSDSA Office toll free: 877-662-7737 or email: info@rsds.org  


*CHRONIC PAIN and SOCIETY
by Annie at TraumaDolls

Saturday, January 28, 2012

Health Insurance Switch: Where Will it Lead Me?

This week has been a very tough one. Through a series of errors and miscommunications, I found out I was going to have to switch health  insurance coverage at the end of the month - which was only ten days away!

I’ve been with the same HMO since I was born. I’m not so much loyal to them because of the incredible quality of service they provide, but because how I have things set up. I have an incredible internist I deeply respect who is quick to respond and always willing to let me try a treatment or get a referral. I have a medication regimen that has been working well for me (there are always flare-ups which upset the balance of things, but not so often as in the past).

I’m scared and a little freaked out. How am I going to find another doctor who is even half as good as my current internist? What will I do if that new doctor will not agree to prescribe the pain medications I am on, or not let me stick with all the other meds I feel are working for me? What if I don’t feel trust or feel comfortable with him/her? How do I pick a new doctor from a list when I am leaving such a great relationship with the one I’ve got now?

Not only am I contemplating those questions, but I only have ten days to try to gather all the health records I need from two different hospitals so I can give them to whichever new doctor I choose in order to get my next prescription refills on time. No physician is going to give me meds without seeing the appropriate records. It’s confusing figuring out where to go, which forms to fill out, deciding how many years back I need from my records, what x-rays and other scans, and then figure out how much it will cost and how long it will take to get it all together.  

On top of all this, in December my pain specialist who had treated me for eleven years with monthly acupuncture, fantastic support, and medical guidance accepted a position at Dartmouth University. I was in such shock; she knew my body better than I did. For a brief moment, I considered following her across the country to New Hampshire. How was I going to manage my pain without her monthly care?

All this is making my head spin. I have to keep telling myself to take a deep breath and try to focus on something positive in this scary situation. Could this be a ‘Godwink’ in disguise? (You can read about what a Godwink is here: Follow the ‘ Winks’ along your Life’s Path

Maybe this crazy situation is leading me to a better place that I would not have chosen to go on my own. Is this the right door opening to a new direction in treatment of my chronic pain? I have to hold on to the hope that the answer is ‘yes’  and that there is a great doctor waiting to take on the challenge of treating me.

All I can do is continue along this path and see where it leads. 
To be continued... wish me luck!

Tuesday, January 24, 2012

Tuesday-Newsday #48

The news subjects today are Chronic Pain, Rx News, and Osteoarthritis. The final category is Chronic Pain & Relationships and the piece by Bruce Campbell is titled, "Lack of Support: ‘My Family Doesn't Understand.’" Although it focuses on people who live with CFIDS & Fibromyalgia, the article can definitely be helpful for those with other chronic painful conditions.

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




My Pain Diary: Chronic Pain Management v1.982 for iPhone Now Available The latest version of 'My Pain Diary: Chronic Pain Management' (MPD) is now available for iPhone and iPod Touch. Created and actively maintained by a RSD/CRPS patient, MPD is an iPhone app that empowers patients of chronic pain and illness to document, track, report, and manage their condition.



*Rx NEWS








*OSTEOARTHRITIS









*CHRONIC PAIN & RELATIONSHIPS

by Bruce Campbell of CFIDS & Fibromyalgia Self-Help

Saturday, January 21, 2012

Quest for Diagnosis 3: Exploring the Mysterious

My husband always thinks I’m crazy for how much I enjoy watching medical television shows. I don’t mean ‘Grey’s Anatomy’ and ‘House’; I’m into the shows about medicine which reveal real footage inside an emergency room or follow what goes on in a maternity ward. He thinks with all my medical problems that I should be sick of anything to do with medicine.

I love real medical shows. I learn so much by watching them. I find it challenging to try to guess what’s wrong with the patient and figure out what treatment is needed. I’m also inspired by doctors rising to the occasion and patients fighting to survive and beating the odds. When I’ve been going through a rough patch with regard to my own medical issues, watching a patient who never gives up inspires me and renews the resolve to not let my painful genetic disease win.

One of my favorite shows is ‘Mystery Diagnosis’. The episodes feature people who are dealing with baffling medical conditions which can go undiagnosed for years. Their lives are taken over and sometimes threatened by these mysteries maladies, their sanity is questioned and their relationships strained. Part of the show’s description says:

“In each personal story, the patients, doctors and everyone involved discover the importance of being vigilant. They learn that medicine is often more of an art than a science, and that the journey to diagnosis can be a twisted path full of many surprises... Time passes and the daily struggle continues. And then one day, because of a patient's relentless pursuit of an accurate and final diagnosis (or the determined efforts of their family or a forward-thinking doctor) the puzzle is solved and an accurate diagnosis given."

The people featured on Mystery Diagnosis are all ages, from all walks of life, dealing with problems ranging from the common to the very rare. It runs on two different networks, Discovery Fit & Health and Oprah Winfrey Network. It has aired for many seasons and is currently in reruns. Check the TV listings in your area for both those channels. If you go to the Mystery Diagnosis home page, there are videos you can watch from show. 

Even if you can’t find your medical condition on the list or you watch the show and never find another person with symptoms similar to yours, I think this show is well worth watching. You never know what you might learn that could aid you in finding your own diagnosis. Never give up!

Diagnosis Series:
-Quest for Diagnosis: Tips to Navigate the Maze
-Quest for Diagnosis 2: When You Can’t Find Any Answers

Tuesday, January 17, 2012

Tuesday-Newsday #47

It’s Tuesday-Newsday but there’s an ALERT for those who live in California. AB 369, the Fail First bill, comes up for a vote this week and your help is desperately needed . PLEASE: it won’t take you more than about 15 minutes to add your voice in the battle to pass a law that will prevent suffering and potentially save lives.

If you live in another state, don’t skip reading about Fail First. Your state could be dealing with the same issue. In the Fail First section below you’ll find a map showing where legislation is pending. If your state has no protection against Fail First, you may want to get busy and lead the charge!

Our other news subjects today are: Rx News and Patient News. The last item is a post by Sue Falkner-Wood called ‘Finding the Heart to Live With Chronic Pain.’

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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*Rx NEWS






*PATIENT NEWS





*COPING WITH PAIN

by Sue Falkner-Wood 


 FAIL FIRST   
~WHAT IS IT &  WHY DO WE WANT TO STOP IT ? *~

Fail First (also known as step therapy) is when an insurer requires that other therapies must be tried and must fail before a patient can obtain the medicine originally prescribed by their doctor. This protocol is used as a cost-saving measure, but in the long run it can actually increase costs because creating a delay in care can increase resistance to treatment or cause other health complications. Some patients are required to try up to five different medications or treatments before receiving the medication they were supposed to get in the beginning. Delaying or denying access to treatment steals time and quality of life from patients, could permanently worsen their conditions, could create serious new health crises, and potentially result in premature deaths. 

To learn more about why we must get legislation passed in each state, read my previous blog post:  We must stop ‘Fail First’!

There’s also an excellent news video on how this terrible policy affects pain patients. Please take a moment to watch: Paying for Pain 

To see the status of Fail First in your own home state see the Legislation Map.


~* ALERT FOR CALIFORNIANS to SUPPORT AB 369 *~

California bill AB 369 prohibits a health plan from requiring a pain patient to try and fail on more than two medications before allowing the patient to have the pain medication prescribed by their doctor. This bill also allows a doctor to determine the duration of any step therapy or fail first protocol.

On Thursday, January 19th the CA Assembly Appropriations Committee will vote on AB 369. We want to them to approve it and send it to the State Senate - and we need YOU to get involved today!

Here’s what I did: Go to the American Pain Foundation page HERE which gives you a form to fill in. When you add your info and...

Saturday, January 14, 2012

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

[ If you missed the first part of this piece, click here: Quest for Diagnosis: 7 Tips to Navigate the Maze ]

Searching for a diagnosis can take weeks or months. For some, it can take years of frustration. Last week while doing my physical therapy in the YMCA swimming pool, I met a man living with an unknown illness. After years of seeing doctors, he was resigned to not ever having the answer and not sure he’d continue to try. He didn’t know what else to do.

I suggested he not give up, that there *are* other ways to try. My last post mentioned the organization In Need Of Diagnosis (INOD), whose mission is to provide help and support for individuals distressed by disorders that have eluded medical diagnosis and to promote medical protocols that will make it possible to get an accurate diagnosis more quickly. There’s a short video news story about INOD you can watch HERE. The executive director, Marianne Genetti, says in this article:

“Medical schools teach aspiring physicians, "If you hear hoof beats, think horses, not zebras". But there are zebras. They are the rare disorders. In the United States, a rare disorder is one which afflicts less than 200,000 people. The number of recognized rare disorders has recently increased from 6500 to over 7000. Though each of those disorders may be rare, rare disorders as a whole are becoming more common.... A primary care physician who has a patient with a complex, undiagnosed disorder, will refer that patient to specialists. Specialists are now specializing within specialties... So each specialist provides only a small piece of the puzzle. There is no one now in the medical system who has the time, or the expertise, or who is charged with the responsibility of putting together, the pieces of a complex diagnostic puzzle. It is like a symphony orchestra with no conductor... For those with a rare disorder, it can take years, a lifetime, or death, to obtain an accurate diagnosis.”  

Another place to go for help in getting a diagnosis when you haven’t been able to get any answers is the Undiagnosed Diseases Program (UDP) at the National Institutes of Health (NIH). Their website says they are currently accepting applications, but be warned: only a very small number of patients are chosen to come. The goal of the program is to provide answers to patients with mysterious conditions that have long eluded diagnosis and to advance medical knowledge. I recently posted two articles about UDP on a Tuesday-Newsday and you can read them here #1 and #2. On the UDP website there is a link to a page with information you also might find helpful titled, Learning About An Undiagnosed Condition in an Adult.’

One more way to get help for your symptoms and possibly work toward a diagnosis is to join a Clinical Trial. I’ve been in a few myself and have written about my experiences in a post titled, Clinical Trials - Could they help you?, which also includes information on how you can find a trial on your own. If you want assistance, NIH also offers really great guidance. You can contact the NIH Clinical Center and talk to a specialist who can help find a trial to match your needs.

I hope the person I met at the pool last week will continue seeking a diagnosis, perhaps using one of options listed above. Living with a chronic painful illness is hard enough when you know what it is, what your likely prognosis will be, and what treatments to try. Not knowing your diagnosis brings a whole new set up issues. Please hang on to hope and keep trying! 


Diagnosis Series Continues:
-Quest for Diagnosis 3: Exploring the Mysterious

Monday, January 9, 2012

Tuesday-Newsday #46

[I'm posting a day early because of the drug recall & warning]


Tuesday-Newsday time! Today we look at stories from these subjects: ALERT: Drug Recall & FDA Warning Pain Rx, Chronic Pain & Meditation, Migraines/Headaches, and Lyme Disease. The last item is a really interesting blog post by Selena at the site OhMyAchesandPains: “My Illness Picture: Thoughts and Impressions On What It Says About Me.”

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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* ALERT: DRUG RECALL & FDA WARNING *

Novartis issued a recall of Excedrin, Bufferin, NoDoz and Gas-X citing concerns that some bottles contain tablets of other medications which could result in consumers taking the incorrect product and receiving a higher or lower strength than intended or receiving an unintended ingredient. This could potentially result in overdose, interaction with other medications a consumer may be taking, or an allergic reaction. Novartis reported this in a statement posted on the FDA website

The recalled lots include select bottle sizes of Excedrin and NoDoz with expiration dates of Dec. 20, 2014, or earlier and some bottle sizes of Bufferin and Gas-X with expiration dates of Dec. 20, 2013, or earlier.  Complete information about the recall and how to get refunds is on the Novartis website. 


FDA officials warn that some of Novartis' over-the-counter pills may have accidentally been packaged with prescription painkillers made at the same facility: Percocet, Endocet, Opana and Zydone. The painkillers are NOT being recalled because they are essential medications for many patients and the risks of stray pills are low.

FDA inspectors are currently inspecting the plant and uncovered a manufacturing problem that could allow pills to become stuck in the machinery and carry over to the packaging of other products. 

There is concern about a shortage of these painkillers in coming weeks due to the shutdown of the facility. Novartis voluntarily halted production at the plant last month. For more information, click the title to read full article.


*PAIN Rx




*CHRONIC PAIN and MEDITATION





*MIGRAINES / HEADACHES



Help With Those “Migraine Resolutions”: Keeping resolutions can be challenging. Here are some resources from Migraine.com to help you stick to some of the most common “migraine resolutions” for 2012.


*LYME DISEASE




*A CHRONIC PERSPECTIVE

by Selena at OhMyAchesandPain

Saturday, January 7, 2012

Quest for Diagnosis: 7 Tips to Navigate the Maze

Fighting a daily battle with pain and chronic illness symptoms takes a lot of energy and fortitude - but how do you handle all the unknowns if you are undiagnosed or believe you are misdiagnosed?

When my illness first appeared and literally toppled me with pain and disability, I began a nearly year long odyssey for a diagnosis. My HMO had me bouncing from specialist to specialist like a ping pong ball in a haphazard search for answers. As I limped to each doctor with my newly acquired cane, struggling with unrelieved pain and overwhelmed with fear, I felt like I wasn’t being heard at all. 

The first rheumatologist said the pain I was reporting didn’t match with my unremarkable x-rays, therefore I must be exaggerating and just learn to live with it. An orthopedist said I could possibly have bone cancer. A second rheumatologist said it could be Lou Gehrig's disease (ALS) which  which my grandmother died from at age 45. An internist believed I had a psychological problem which was manifesting in hypochondria. And it went on and on and on.

From my garden : Dahlia "Citron de Cap" with
background of Dusty Miller and Hypoestes.

Even though I was in so much pain I spent most days curled in the fetal position in my recliner... even though I was feeling desperate and depressed... even though I was so stressed I stopped eating, became anorexic, and lost 50 pounds... even though I told every doctor each of those facts... none of them ever referred me for pain treatment, psych support, or eating disorder counseling. In many of these appointments they hardly made eye contact or even touched me, opting only to read my file and give their opinion without asking me any questions or ordering any tests. I was so lost and scared, I got to a point where I didn’t know where to turn or what to do.

Months later, my parents intervened after seeing how messed up I was. They paid out of pocket to personally take me to Stanford University Hospital. Two weeks later, I had a diagnosis. Looking back now I can see where I made key mistakes. I had no real plan when I went to doctor's appointments and I felt so down and hopeless that I expended no energy toward doing my own research or keeping track of my symptoms. Additionally, I was in a complete physical and emotional crisis; not taking care of myself on any level only made me more miserable and further distracted me from finding a diagnosis.

It's important to remain focused, to keep organized on tracking symptoms and history, and most of all to take care of yourself. For many of us, finding a diagnosis is a long and arduous process. Here are some helpful signs and tips to aid you:

Seven Signs to Look for if You Feel You’ve Been Misdiagnosed
[from Arthritis Today, read full text of the article HERE]

1) Your diagnosis is based exclusively on the results of a blood test.

2) Your doctor has prescribed a treatment, but it isn’t working.

3) You were diagnosed by a physician working outside his or her specialty.

4) A lab test is needed to make a definitive diagnosis, but your doctor never ordered it for you.

5) Your symptoms don’t match your diagnosis.

6) You didn’t get a physical exam.

7) Your doctor didn’t ask enough questions about you.


Seven Tips for Navigating the Maze When Seeking Diagnosis
[taken from an AARP article, read full text HERE

~Keep detailed records: 
Ask for copies of your test results as they come in, keep a patient journal and track your symptoms carefully, take notes at appointments or record them, ask around about your family history and find out if anyone has had similar issues. Be faithful with keeping details because you never know when a small detail could be the key leading to a diagnosis.

~Come prepared to ask the right questions:
Have a list of question ready so you can maximize your time. Some sample questions to jot down: Is there more than one disease that could be causing my symptoms, and how good are the tests for diagnosing this condition? It’s also smart to bring a second person with you, because they’ll hear things differently and may pick up on something you missed.

~Be assertive:
Don’t be afraid to ask for tests or treatment you think might help you, but understand that you may not be be able to get them or they may not be the right thing for you. Check out reputable health sites like the Mayo ClinicNational Institutes of Health (NIH), and HealthFinder.gov

~Be honest:
Share all important information with your doctor such as what supplements you take, if you take illicit drugs/drink alcohol, any alternative therapies you are trying and any other things like, as in my case, untreated anorexia.

~Explore new avenues:
Patient-advocacy organizations such as In Need of Diagnosis  - and others that represent the interests of patients suffering from a particular disease - often try to match patients with the right medical specialist.  

~Trust your gut:
If you don’t believe the diagnosis, get a second opinion or even a third. I *always* recommend seeking a second opinion even if you agree with the doctor, just to make sure you’ve consider all aspects of your symptoms and to get other ideas about treatment options.

~In the absence of a diagnosis, treat your symptoms:
Figure out how to manage your disease through lifestyle changes, medications, physical therapy, or however you can. It may take you a long time to find a diagnosis but life keeps on going forward and you don’t want to be left behind. 

Looking back now, I should have insisted on seeing a pain specialist or getting help for my anorexia instead of waiting for a diagnosis or for a doctor to intervene. I know if I had gotten treatment for those in the beginning, I never would have become so ill and depressed. It’s vitally...  

Tuesday, January 3, 2012

Tuesday-Newsday #45

Today we look at news from these subjects: Chronic Pain, Patient News, and Fibromyalgia.  The final item is Embracing Life. The blog post is “Giving Thanks For The Healing Power Of Gratitude” written by Gabrielle Gawne-Kelnar at TheTherapistWithin.

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

(note from me: I get tremendous relief from dry needling, and I’ve even been treated by the doctor in the article from NIH.)

*PATIENT NEWS

*FIBROMYALGIA 

*EMBRACING LIFE
by Gabrielle Gawne-Kelnar at TheTherapistWithin