Monday, September 15, 2008

Thank You!!


That's how much was raised in the Out of Darkness Walk on Saturday. Although I did not meet my projected goal, every little bit helps. I wanted to thank each person who donated. Overall the day was a success. Tons of people showed up, many with their pooches, to participate. I wasn't able to do the walk itself, but I sure had fun meeting so many new people.

There are still plenty of walks going on around the country. Click here to find one in your area.

Friday, September 12, 2008

Mental Health Parity Rally Sept. 17th‏



The Mental Health Liaison Group Invites You to Join Advocates for Fairness at a Rally for Fairness on September 17 at the Cannon House Office Building Terrace

The public is invited to a rally for mental health parity legislation that will be held at 9:30 AM on Wednesday, Sept. 17, on the Cannon House Office Building Terrace. That is at the corner of Independence Avenue and New Jersey Avenue, Southeast. The closest Metro stop is Capitol South on the Blue/Orange Line. Please see previous Bazelon Center alerts regarding mental health parity.

What You Can Do:
If you can't attend this rally, please forward this invitation to colleagues in the
Washington, D.C. area who can attend.

Speakers will include the sponsors of the mental health and addiction parity legislation, Representatives Patrick Kennedy and Jim Ramstad, as well as David Wellstone of Wellstone Action. Invited but not yet confirmed are Senators Pete Domenici and Christopher Dodd and the chairmen of the House committees that have been negotiating the House-Senate agreement. Speakers are making themselves available to the press after their remarks. The event is expected to conclude by 10:30 AM.

After the rally constituents should take the opportunity to drop by the offices of their members, to further press the message that Congress should not adjourn without passing the bipartisan and bicameral agreement on parity legislation.

Call-In Day:
Thanks to the many thousands of parity advocates who called their senators and representative yesterday!

Support Letter:
Last evening we delivered to the Congressional Leadership our letter asking for passage of the parity agreement before the Congress adjourns this month. We're very pleased that 250 organizations nationally joined together as cosigners. Thank you to all who helped! To view the letter, watch our web site, where it'll soon be posted.

Tuesday, September 9, 2008

National Call-In for Parity Wednesday

With Congress back in session this week and only a short time left, it must pass mental health parity legislation. This is the moment to remind lawmakers that parity legislation is critical, unfinished business.

Never in the almost two-decade fight for parity have we been closer to victory. If Congress fails to bring parity to a vote before adjourning later this month, we must restart the push for parity in 2009. Help us win its passage by joining in the National Call-in for Parity tomorrow, September 10.

National Call-in for Parity
Please call each of your U.S. Senators and your U.S. Representative using the toll-free Parity Hotline: 1-866-parity4 (1-866-727-4894). The Parity Hotline reaches the U.S. Capitol switchboard, which can connect callers to the offices of their members. You can also call the Capitol switchboard directly: 202-224-3121.

Remind all members of Congress that:

  • Mental illnesses are real,
  • Treatment works – if you can get it,
  • There is no justification for a health plan to impose limitations or conditions on mental illness treatment that do not apply to all other medical conditions, and
  • There is broad agreement on a compromise version of the mental illness insurance parity bill (S 558-HR 1424), now Congress just needs to finish the job and pass the bill so it can be signed in to law this year.

Click here to find the names of your senators and representative.

The Message: “I’m calling to ask the Senator/Representative to press congressional leaders to bring mental health parity legislation to a vote. It’s critical that Congress pass parity legislation this year.”

Take Further Action
Follow up that call by sending a “Parity-Now!” email to your members of Congress. Take Action!

Monday, September 8, 2008

Invisible Illness Awareness Week

Today kicks off the Invisible Illness Awareness Week.

What is an invisible illness?

When you first meet someone with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) you likely have no idea that person is sick. Same goes for people with arthritis, multiple sclerosis, diabetes, heart disease, cancer, eating disorders, depression, endometriosis, diverticulitis ... the list goes on and on.

When someone has the flu, or a cold, or an injury, it's generally pretty obvious by looking at them. We can also see when someone is in a wheelchair or uses a cane, or if they're hauling around an oxygen tank. Those are the images that come to most people's minds when they think of "chronic illness" or "disability." Here are some staggering facts:

  • * According to the U.S Census Bureau, 96% of chronic illness is invisible.
  • * Nearly half of Americans are living with some sort of chronic illness.
  • * 70% of people who commit suicide have uncontrolled pain.

Pain, along with fatigue and brain fog, are invisible symptoms of our invisible illnesses, but that doesn't make them any less debilitating than visible symptoms. National Invisible Chronic Illness Awareness Week (Sept. 8-14) aims to get people to understand that concept.

Check out these links:

National Invisible Chronic Illness Awareness Week

How the Seminars Will Work - Instructions for Invisible Illness Week « Invisible Illness Week Blog

Invisible Illness Week Blog

National Invisible Chronic Illness Awareness Week Conference Room

Can Those with an Invisible Illness Park in the Blue Spots without Others Seeing Red? - Christian Newswire

Top Links to Have Handy this Week! « Invisible Illness Week Blog

As someone with a new diagnosis of fibromyalgia and osteoarthritis, I'm already receiving flack from friends and family who just don't "get it". The Bipolar, they understand. The severe seasonal depression they understand. But the chronic pain and complete lack of energy they are having a hard time accepting.

In my family it was just assumed that I would be taking care of our parents in their old age. Right now I can barely take care of my own day to day activities. A simple thing like taking a shower and getting dressed for the day wipes me out. My PCP has finally decided it was time to refer me to a specialist.

One final note---the fibromyalgia and osteoarthritis came about because I had WLS. So much for making my health better, huh.

Saturday, September 6, 2008

Out of the Darkness Community Walk


Alabama Walk
September 13, 2008 at Heardmont Park

Dear Friend,

I will be joining with thousands of people nationwide this fall to walk in AFSP's 2008 Out of the Darkness Community Walk to benefit the American Foundation for Suicide Prevention. I would appreciate any support that you give me for this worthwhile cause.

The American Foundation for Suicide Prevention is at the forefront of research, education and prevention initiatives designed to reduce loss of life from suicide. With more than 32,000 lives lost each year in the U.S. and over one million worldwide, the importance of AFSP's mission has never been greater, nor our work more urgent.

I hope you will consider supporting my participation in this event. Any contribution will help the work of AFSP, and all donations are 100% tax deductible.

Donating online is safe and easy! To make an online donation please click the "Support This Participant" button on this page.

As someone who knows first hand that deep dark pit of despair, this cause hits very close to home for me. Without the help of organizations like this I would not be here today. So please take the time to donate.

Due to my health limitations at this time I will not be participating in the walk itself. I will be volunteering only to help register participants. Please continue to help support the cause by donating.

Thursday, September 4, 2008

Are You Blogging for Invisible Illness Week

But you don't look sick.

I hear this quite frequently from friends and family members. Living with a chronic illness or a mental health illness is difficult. Simply because there is no outward symptoms. I haven't reached the point some suffers have. I am still able to get around okay. But the pain is there. It saps all of my strength, so much so that my sis has hired someone to come help me clean my house once a week. I'm not even able to get outseide and play with my pooch very much.

Won't you join me in blogging about Invisible Illness Awareness Week.

Wednesday, September 3, 2008

Apparently I'm a Socialist

I always knew I had very liberal views politically. But I was truly surprised when it stated I was a Socialist. Head over and see where you stand. Leave a comment with your own results.

You are a

Social Liberal
(66% permissive)

and an...

Economic Liberal
(11% permissive)

You are best described as a:


Link: The Politics Test on Free Online Dating
Also : The OkCupid Dating Persona Test

Tuesday, September 2, 2008

All about me....

It's been awhile since i gave an update on what's been going on with me. Still dealing with the fibromyalgia pain, as well as osteoarthritis. Some days I feel a 100 years old. I had a lump removed from my breast---it was benign thank goodness. Saw my hematologist this past month---good news on that front---my iron levels are finally up as well as my blood counts. I go back to see her in November.

My weight has finally leveled off at 175. The eating disorder part of my brain is playing havoc with me right now. I have to make myself continue with my shakes and eating. I don't own a scale so I can't obsess about the numbers. I just need to remind myself my health is more important than being thin. As my docs say---they would rather see me fat and healthy than thin and dying. Having dealt for over 30 years with an ED makes it difficult to stay on track. I'm hiding in super big clothes once again. I am working on this with my therapist. I don't think I will ever be in "recovery". It will always be a day to day thing for me.

I'm seeing a dentist and am in the process of having all my crumbling teeth removed. Only seven more to go and I'll be a toothless old hag. The dentist wants me to "heal" for 6 months before being fitted for dentures. Fun right. It makes eating a real challenge. Luckily I am well prepared with some great recipes for things to eat that don't require alot of chewing. Last thing I need is to have something "get stuck" in my pouch from not chewing enough.

I see my PCP on Thursday for my full scale lab work. I'll be able to see if things look better. Keep your finger crossed. I haven't broken any bones recently so that's a good thing. My doc is monitoring the osteoporosis. He is convinced I'll be needing hip replacement and knee replacement in the not too distant future. I'll just worry about that when the time comes. Right now I'm okay.

My Bipolar Disorder is doing much better since my pdoc put me on Risperdal injections. This way I don't have to worry about the malabsorption of my meds. The real test will be this fall. Fall is always a difficult time for me. I end up slipping into a deep depression. Hopefully this year will not be as bad. I've already pulled out my light box, plus I take mega doses of Vitamin D now. Only time will tell.

Well that's about it.

So how are y'all doing????