I just got an interesting letter from The National Fibromyalgia Association:

On Tuesday, March 16, the National Fibromyalgia Association – along with members of the California NeuroAlliance – will be in Sacramento to meet with state lawmakers about proposed legislation that ensures continuation of care for prescription drug coverage.

The Continuity of Care for Prescription Drug Coverage bill (AB 2170), authored by Bonnie Lowenthal (D-Long Beach), prevents health plans and health insurance regulated by the Department of Managed Health Care and the Department of Insurance from increasing enrollees’ out-of-pocket costs for prescription drugs between annual enrollment periods.  This legislation is vital to ensure continuity of care and protect consumers with fibromyalgia and other chronic illnesses from unplanned out-of-pocket costs for necessary prescription medications.

Make your voice heard!

As a California resident, you have a story that is of immediate relevance to the lawmakers we will be meeting with on March 16.  We are looking for stories from people living with fibromyalgia about any unexpected increases in out-of-pocket costs for prescription drugs.

A few key points to consider in your response:

• When did the cost increase occur? Was it during the contract year, between annual enrollment periods, or upon plan renewal?
• How much was the out-of-pocket increase?  Did it double or triple?
• If the increase occurred between open enrollment periods, how did you find out about it? Did the insurance company notify you, or did you find out when you refilled your prescription at the pharmacy?

Please keep all personal stories to a maximum of two pages.  All entries should be submitted to Rachael Kronzek at the National Fibromyalgia Association via e-mail (rkronzek@fmaware.org) or fax (714-921-6920).  If you have any questions or need any assistance, contact Rachael Kronzek at the e-mail provided above or by phone at (714)-921-0150.

So if you happen to be a California resident and have had an increase in prescription costs…nows your chance to tell them about it.

My big beef is with Xyrem. I, like the majority of people with fibromyalgia, don’t sleep well at night. I have three (four on a bad night) different drugs I take at night to go to sleep. (Oops, make that five because I’ve been trying “edible” marijuana too…without a whole lot of success, but mostly because I’m too chicken to eat much.) I’d really like to try Xyrem but my insurance company would rather not pay for it if all the other drugs work most of the time. Xyrem is really expensive so if the insurance company isn’t covering it and I can’t afford it, then I’m not taking it.

So no, I don’t have any unusual out of pocket expenses because I can’t afford to have out of pocket expenses. I’ll stick with the generics that the work. Mostly. And I guess the marijuana counts as an out of pocket expense. Once I figure out how that works maybe it’ll be useful. Too bad I can’t write that off as a medical expense, eh?

So the gang all got together and came up with a plan…let’s put on a show! Kidding.

Actually “the gang”  started with a forum for women with chronic “Invisible Illnesses” called Chronic Babe. (Chronic Babe is the brain child of Jenni Prokopy.) The one thing we all have in common is invisible illnesses like Diabetes, Crohn’s Disease and other digestive illnesses, Chronic Fatigue Syndrome, Fibromyalgia, Migraines, Sjogren’s Syndrome, Multiple Sclerosis, Depression, Insomnia, Anxiety…you get the idea? We’re the people that get that awful comment “But you don’t look sick!”

Chronic Babe is one of the few places those of us with chronic invisible illnesses can can talk about our lives as they are and be understood. That’s a precious gift. And who knew there’d be quite a few of us blogger types who wanted share our stories? So we, using the theme of “what do you want people to know?” created posts that we’re sharing here.

So instead of putting on a show (was that a really lame introduction or what?), we created our own carnival to introduce ourselves, to each other and to the rest of the world.

These are in no particular order…but each is a fascinating read.

Katie at Overflowing Brain explains “The Invisible Rules“ of invisible illness

Ashley at Lymenaide provides an in-depth picture of Lyme Disease in “What Everyone Should Know About Lyme Disease“. Lyme is Often referred to as the great imitator, Lyme disease is rarely properly diagnosed at the onset of infection. The illness is commonly misdiagnosed as; Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS) which is often referred to as “Lou Gehrig’s Disease, Chronic Fatigue Syndrome (CFS), Autism, Attention Deficit Hyperactivity Disorder (ADHD), Lupus, Parkinson’s Disease and many other chronic illness and syndromes.

Diana Lee at Somebody Heal Me When Diana Lee started having chronic migraines in 2003, she thought she’d find the right treatment and get back to her life as planned. She thought she’d be engrossed in a successful career that she’d worked hard for and starting a family at this time in her life. But she’s not and doesn’t know if she’ll ever be able to have these things because of  health problems. She is “Grieving My Old Dreams”

Annie at It’s Time To Get Over How Fragile You Are talks about freedom fantasies in “See You Later Illness, I’m Off to Dream Land“

KD at Making Noises about what allows her to be more than a person with a chronic illness in “Behind the Lens”

Elisabeth at Redefining “Good” introduces her illness as “one thing after another” in her “Introduction”

My Foggy Brain has an epiphany; “You are responsible for your health and your happiness!“

Forgetful Girl writes A Reflective Post at Diary of a Forgetful Girl: “21st birthdays are a special time, and I had hopes for my 21st year. Unfortunately, I became ill! Here’s a little reflective piece on that 21st year, and what my hopes have now become.”

Jolene at Graceful Agony shares in “Searching….” about all of the illnesses I deal with on a daily basis, and searching to find ME in all of it, changing my aspirations, and focusing on the things that truly matter to me…

Maureen at Mo is Blogging…I Think provided an answer to the persistent question “Are You Still Sick?”

Assiya at For A Fairer Today shares just how much “Time” our illnesses take away from being productive.

Brittney who writes about The Road I’m On posted “Niches” noting where we fit in isn’t always where we expect to be.

Dannette reflects in FibroHaven and found that she is no longer at the mercy of fibromyalgia “I have Changed. I am Different. I have Improved.” YES!!

(Just one of those sweet little factoids…I’ve actually met Dannette! In person. Face-to-face. I reached out to her for help shortly after I resigned from my job and she talked me off the ledge. She is an amazing woman.)

This has been an amazing introduction. Thank you! I apologize for it being late and scattered…but that’s what happens when fibro-fog takes over. Only you would understand…