dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, May 31, 2011

Tuesday-Newsday #14

Today my featured subjects are Rx News, Migraine, and Rheumatoid Arthritis. I’ve also included Pain & Emotions, a newsletter from Jan Sadler of PainSupport UK.

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, meds, etc., in anything I post nor can I guarantee that 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!

Vision Problems from Drug ‘Humira’ Result in Lawsuit Over Optic Nerve Damage (drug treatment for Rheumatoid Arthritis and Crohn’s Disease)
PainSupport Newsletter by Jan Sadler: Pain & Emotions

Saturday, May 28, 2011

Don’t Isolate Yourself

This week, I bought a new pet. Well... not really a pet, but that’s how I think of him. I decided to expand my group of carnivorous plants and I bought my first Venus Flytrap. I love carnivorous plants. They are so exotic and unusual, each one so marvelously different in how it manages to catch prey and survive.*

My new flytrap is quite young and small. My husband and I named him ‘Fang’ as I consider him to be male. Fang can catch flies and other similar insects in the open ‘traps’ which top each of his stems. There’s only one problem; it’s been so chilly that I’ve been having to keep Fang mostly indoors. All his prey is outside (and I intend that they stay out of my apartment!) so he has had nothing to eat since I bought him. 

I’ve been trying to find bugs for him. I dug into some of my plant pots and my hubby even scratched around in the dirt near my pond. Nothing! How can it be that when you need some bugs you can’t find any? I may have to go to our local pet store and buy some crickets just so Fang can have a meal and get the nutrients he needs to start growing.

In the middle of this dilemma, I began to think of Fang as someone with chronic pain / illness. If he was living in the wild, he’d be in a marshy swamp exposed to the elements and unable to help himself. He couldn’t reach his food; he could only open his traps and hope to entice the prey to come. He could not ask for help or rely on a neighboring plant. He couldn’t pick up and move to a better environment. He would be at the mercy of his surroundings. He’d be truly stuck. Isolated.
Venus Flytraps

When I was in the worst part of my depression, anorexia, and chronic pain I isolated myself from the world. I allowed myself to get stuck in the swamp of my dark and hopeless feelings and I did not leave the house (I hardly left my recliner - I’m surprised I didn’t have to have it surgically removed from my derriere!). I didn’t interact with people if I could help it. I mired myself in an unhealthy isolation. I allowed myself to become like Fang, holding open my hands wishing for help and a better life, but not pushing myself into a place where I could actually reach what I needed.

Of course, I eventually did get the help and my life is completely different now. Even so, I do on occasion catch myself getting into isolation mode, wishing for something better but not putting in any effort to achieve it, just sitting there and shunning the world, feeling like it requires too much energy.

We all feel that way sometimes. The trick is to recognize when you are starting to isolate yourself and not allow it to last too long. Most importantly, if you are having a depressive episode or a bad symptom flare-up, see your doctor. However, if you just find yourself wanting to close off and hide away from the world, think about Fang and don’t let yourself get isolated:

~Ask for help... or just a little attention from your loved ones to feed your lonely soul

~Be willing to accept help. You’ll have the chance to return it to that person someday.

~Pull yourself out of your ‘swamp’ and force yourself out of the house: to a movie, to have coffee with a friend, for a walk with your neighbor - make yourself spend a little time with another person every day. Don’t let yourself be alone all the time.

~Find a purpose: get a head start on Christmas gifts and knit a scarf for your Mom, volunteer at the local shelter to pet the cats or walk the dogs, take up a cause like fighting Fail First, 'adopt' a grandma or grandpa at your local nursing home and brighten their life with visits, get your friends together and start a book or recipe club, etc...  Find something that feeds your soul and gives you the motivation to get up out of bed every day. Pushing yourself to work toward a positive goal gives a feeling a satisfaction that even eating chocolate cannot beat (did I just say that? yeah, it’s true, believe it or not!)

Poor Fang. Even though I can protect him from the weather, I cannot make bugs fly into his reach. Thankfully, he does not need a voice to ask for help because I am here to provide for him until conditions improve.

Now, off to buy some crickets at the pet store...

*If you are interested in carnivorous plants check out California Carnivores. It’s a fantastic nursery for these amazing plants & a great deal of fun to visit, too! You can take a virtual tour of the nursery on the website. And if you decide you want a carnivore, they ship live plants right to your door.

Tuesday, May 24, 2011

Tuesday-Newsday #13

Today my featured subjects are Pain News, Female Pain Conditions, and Osteoarthritis. The last category, Living with Chronic Illness/Pain our way - not how others say we should, features a great piece by Lisa Copen on how we need to focus on what works for us and not allow others to judge us or tell us how to live.

Don't Forget: If you live in California, don't forget to add your voice to the fight against 'Fail First' by supporting legislative bill AB 369. The deadline for our letters is Thursday this week. Read my last blog post for all the details.

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, meds, etc., in anything I post nor can I guarantee that 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!

The Mystery of Chronic Pain
Dr. Elliot Krane MD, Director of Pain Management Services at Lucile Packard Children's Hospital at Stanford explains the complex mystery of chronic pain. This short video underlines how pain can transform from a symptom into a disease. View the video HERE
INvisible Project: The goal of the INvisible Project is to create pain awareness through photographs of pain survivors.



Friday, May 20, 2011

Call to Action: Update on the fight against ‘Fail First’ policy Your help needed if you live in CA, CT, or NY

(I'm posting a day early because your help is needed on this important issue right away!)

‘Fail First’, also known as Step Therapy, is an unethical prescription practice used by some health insurance plans. The insurer requires that other treatments must be tried and must fail before the pain patient can get the drug originally prescribed by their doctor. Some individuals are required to try and fail five times before they receive the meds 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. Insurers should not be making medical decisions; it should be between you and your physician!

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

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


~CALIFORNIA: AB 369 moves another step, your support is needed THIS WEEK!
AB 369 prohibits a health plan from requiring a 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.
We passed AB 369 through the Assembly Health Committee on a 13-5 vote on April 26th.  One big hurdle down! This bill, authored by Assembly Member Jared Huffman, will be considered before the Assembly Appropriations Committee on Thursday, May 26th

We need your support letters NOW!! If you would like to assist getting this bill through Assembly Appropiations, we need you to send another signed letter of support. Please make the effort to take just a little time to make your voice heard! This policy could hurt you... or someone you love. We need to stop it! For details on sending a support letter, go here: How You Can Support AB 369

To read a news article about California’s bill, click here: 

~CONNECTICUT: Senate Bill 1083 heads for the final vote!

Last week, Connecticut's Senate Bill 1083, an act concerning health insurance coverage of prescription drugs for pain treatment, moved one-step closer to becoming a law. Passing through the general assembly 40-13, SB 1083 will now head to the floor of the Senate for one final vote. 

This could potentially be a huge win for the pain community, as this bill prevents an insurer from requiring the use of over-the-counter medications when a physician has already determined that such medications would be ineffective.

We need your help to guarantee SB 1083 becomes law by reiterate that step therapy or fail first policies are issues that we as pain survivors live with everyday. Unfortunately, many health insurance companies and some pharmacies have hired lobbyists to fight the passing of this bill and they are working tirelessly to negate our message: every patient deserves access to proper care and treatments that will help them manage their condition. 

To find out more about how to help in Connecticut, click here: 

~NEW YORK: Assembly bill A6049 / Senate bill 5110
On May 10, 2011, the Global Healthy Living Foundation (GHLF) held a successful Advocacy Day, spearheading a coalition of advocacy groups who gathered in Albany and spoke to representatives in favor of Fail First/Step Therapy Reform Bills in the legislature. 

Joining GHLF in their efforts to represent patient interests in the Capitol were representatives from the US Pain Foundation, the American Pain Foundation and ABRUD (American Brotherhood for Disabled and Elderly people). Several organizations wrote letters of support, which were presented to Assemblymembers and Senators, including the American Cancer Society, Dysautonomia Foundation, National Alliance on Mental Illness-New York State Chapter, National Psoriasis Foundation, and New York State Osteopathic Medical Society.

The bill will soon be headed to the Insurance Committees in the NYS Assembly and Senate, and there is still advocacy work to be done in the meantime! Write a letter of support or contact Alexey Salamakha (asalamakha@ghlf.org) to find out other ways to show your support. Read more here about Advocacy Day
~Do you know another state with a ‘Fail First’ bill pending?
If you are fighting ‘Fail First’ in your state and have a bill moving through your legisltature, please send me links and articles so I can highlight your battle and hopefully help you to pass it into law.

Thanks to Fail First Hurts, the Reflex Sympathetic Dystrophy Association, and For Grace for providing the information to write this blog post.

Tuesday, May 17, 2011

Tuesday-Newsday #12

Today my featured subjects are Pain News, Fibromyalgia, Diabetic Neuropathy, and Chronic Illness & Diet

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, meds, etc., in anything I post nor can I guarantee that 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!

See the full survey results HERE 

Saturday, May 14, 2011

Clinical Trials - Could they help you?

Have you ever been curious about clinical trials? Ever wondered if you should try to get into one? I’ve been in a few trials myself and two of them led to extremely positive changes in my life. I’ll tell a little about my experiences further down the page, but let me give you the basics about what clinical trials are...

At first, a trial can seem a little scary and daunting. You might think all trials are difficult and dangerous, but that isn’t true. It can be an excellent way to get treatment when you can’t afford it, a chance to meet doctors who have been studying your medical condition, you may gain access to new research treatments before they are widely available, and of course it’s an opportunity to further scientific knowledge which will help other people - perhaps even a member of your own family.

The FDA is particularly interested in women and minorities being a part of clinical trials. In the past, white men were used as the primary participants. This means some groups, particularly women, African Americans, Hispanics/Latinos, American Indians, Asians, and Pacific Islanders have not always been included. However, drugs and therapies can often work differently for these groups, so the FDA is aiming for more diversity among those enrolled in studies.


*Treatment trials test experimental treatments, new combinations of drugs, or new approaches to surgery or radiation therapy.

*Prevention trials look for better ways to prevent disease in people who have never had the disease or to prevent a disease from returning. These approaches may include medicines, vaccines, vitamins, minerals, or lifestyle changes.

*Diagnostic trials are conducted to find better tests or procedures for diagnosing a particular disease or condition.

*Screening trials test the best way to detect certain diseases or health conditions.

*Quality of Life trials (or Supportive Care trials) explore ways to improve comfort and quality of life for individuals with a chronic illness.


There can be risks to the participants in clinical trials:

~There may be unpleasant, serious or even life-threatening side effects to experimental treatment.

~The treatment may not be effective for the participant.

~The trial may require more of their time and attention than would a non-protocol treatment, including trips to the study site, more treatments, hospital stays or complex dosage requirements.


To help you decide if you want to be in a study, the FDA requires that you be given complete information about the study before you agree to take part. This is known as informed consent. You must be told absolutely everything, including:

~the purpose of the research & how long the study will take

~if the study involves research of an unproven drug or device

~the possible risks or discomforts & the possible benefits of the study

~what other procedures or treatments you might want to consider instead of the treatment being studied

~whether any medical treatments are available if you are hurt, what those treatments are, where they can be found, and who will pay for it

Informed consents must be written out and you must sign it before you can be in the study. Make sure you understand all of it before you agree to be involved. The informed consent form is NOT a contract and you can quit the study at any time, for any reason.

There are a lot more things to know about clinical trials before you join one. Here is an FDA web page which can offer you more insight: Understanding Clinical Trials


I’ve taken part in four different clinical trials, but I’ll talk about the two which most affected my life...

In the emotional struggle dealing with the chronic onset of my genetic disorder, I became anorexic. At that time, my insurance did not offer any treatment for people with eating disorders and I was desperate to get help. I found out about an eating disorder clinical trial at Stanford University which was offering talk-therapy as part of a nine-month study. The catch was, there would be three trial groups. One group would take the antidepressant Prozac and get therapy with a psychologist, the second group would have the therapy but take a placebo (which has no real medication in it but the patient does not know), and the third group which would get neither therapy nor drugs and just be studied as a control group. The trial would provide monthly health screenings with a doctor, regular blood and urine tests, and nutritional counseling. We were also offered a fee.

I was hoping to get placed in the “therapy with no meds” group because I didn’t want to take any medication. However, the free therapy was such a prize that I consented and was randomly placed in one of the first two groups. I didn’t know until after the study was completed that I was actually taking the antidepressant and not the placebo. The trial ended up being extended and twice a year for the next two years I had follow up interviews; one was by phone but the second required a face-to-face meeting and included an additional fee. I agreed to continue; I figured since my illness was taking so much from me that I ought to make a little money off of it!

The second major trial I took part in was at the National Institutes of Health (NIH) in Bethesda, Maryland. After being diagnosed as having a certain type of genetic collagen disorder by Stanford University, I was told NIH was recruiting for a study which would fully evaluate patients with all sorts of diagnostic tests and follow us (and in some cases, our entire families) for 10 years. It was not a drug trial; it was meant to find out about our genes and our long-term prognosis. I was thrilled to be accepted into the trial and equally thrilled to meet doctors who actually knew more about my illness than I did! 

I flew alone to NIH and for a whole week I had tons of tests done, from X-raying every bone in my body, to extreme eye exams I can’t even begin to explain, and other tests you don’t want to hear about! When I left...