Tuesday, March 31, 2009

The House Passed the National Pain Care Policy Act of 2009, H.R. 756!

From the American Pain Foundation today - EXCITING NEWS!
Together we have been successful; your voice was heard! Your hard work has helped to move this important legislation through the House of Representatives at a remarkable pace. Thank you for your dedication and commitment to improving pain care in America! There is still more work to be done! The same bill has already been introduced in the Senate. We need your Senators to co-sponsor the National Pain Care Policy Act of 2009, S.660.

Let your voice be heard! Take action now by sending a letter to your Senators urging them to co-sponsor this critical pain legislation! This bill will make pain care and pain management a public health priority for the 76.5 million Americans who are suffering with persistent chronic pain and will improve the understanding, assessment and treatment of their pain.
Together we will improve pain care in America!

IV Vitamin C (ascorbic acid) Treatment

Many of my closest friends know I am participating in treatment seeking cures for inflammatory processes that are at work in arachnoiditis.

It has been so rewarding and also so difficult at the same time. I've tried to stay upbeat. For the most part, have been so. I am running, not walking, the race. So many lives depend on more successes. I've promised myself I will sprint to the finish line.

Last night was one of the more difficult times I have experienced in this process. The dosage we tried yesterday was higher and not preservative free. I have so many allergies from so many insults to my body that I need preservative free product. Premedication is necessary and I will need to up the dose for the next IV. Only during the early morning hours did I know I would not need a trip to the emergency room. There were times last night I wondered how I could go through another one of these treatments. It is daylight, my face is puffy from the allergic reaction, am bleary eyed, teary and so tired. BUT I have no back pain, no leg pain, and I can walk and balance! Muscle spasms are virtually gone today.

I am here, and so the cause continues. Yesterday on the way home, Lizzie and I stopped in Alco waiting on prescriptions from Jack's Market next door. There was a sale on some rustic little items that really caught my attention with me being a philosophy major. Little did I know I'd look over at them this morning wondering, "How will I get through today?" Sitting next to me is the one that says: "Life is not measured by the number of breaths we take, but by the moments that take our breath away."

It is morning now. I feel like it is time to go to bed for the day. In my heart of hearts, I believe I walk this path due to the strength in my heart and soul .... but I might need new shoes as mine are beginning to wear from the shards of glass in my path.

I need my friends, I need some prayers, and I need courage because, just today, I am ready to stumble.


Love to you all,


Tuesday, March 24, 2009

American Pain Foundation

To stay abreast of what is happening with the American Pain Foundation you may go to www.americanpainfoundation.org

The National Pain Care Policy Act 2009, S.660, has been introduced in the Senate!

This post is taken directly from an email update received 3/24/09 from the American Pain Foundation:


The National Pain Care Policy Act of 2009, H.R. 756 has been in the House of Representatives since January of this year. It is currently pending the full vote of the House.
This bill has now been introduced in the Senate thanks to the efforts of Senator Orrin Hatch (R-UT) and Senator Christopher Dodd (D-CT). With this important bill now in both houses of Congress it is imperative that your Senators hear from you. Let your voice be heard! Inform your Senators that you are concerned about the hidden pain epidemic in our country and as a resident of their state you are requesting their support as a co-sponsor.

Please take action by sending a letter to your Senator urging their immediate support for this important legislation!

Thank you for being part of this united effort to eliminate the under-treatment of pain in America.

Sunday, March 22, 2009

Improvement with Natural Immune System Support

We have received several emails this last week showing an interest in one of our co-founder's treatment approach.

Through weekly IV vitamin C combined with magnesium treatments, one of our co-founders has gone from having to be fairly sedentary back to an active lifestyle. The therapy began in November 2008 and continues today. The co-founder is walking 6.7 miles 3-4 times a week, mountain biking, snorkeling, swimming, fishing and over 95% of nerve pain in legs is gone. This is tremendous. The best part of all is it is all natural and most of the items are available at a vitamin store or even a store like Walmart.

Anyone wishing more information, please email us and we will get back to you. We highly suggest taking the information to your primary care provider.

Keep the hope folks!

Friday, March 20, 2009

LWA Blasting Off


As of March 20, 2009 LifeWithArachnoiditis.com is finally lifting off the ground! What better time than the first day of Spring? Let us now "Spring into Action."

Let us be known as a "Grass Roots" organization that is going to do something about this massively underdiagnosed condition and its cause, most often, medical procedures. The "Cover Up" will be exposed. To do this, we need EVERYONE on board: patients, spouses, family, caregivers and interested parties.

New members will be introduced in our blog. Please send in research, articles and basically anything that may help the cause. We are organizing and gathering numbers. Answers will be found.


Love - Co-Founders - Life With Arachnoiditis

Thursday, March 19, 2009

Please Welcome a New Member

We would like to welcome Donna Nichols and her husband to Life With Arachnoiditis.

Donna's husband had back surgery a year ago and developed arachnoiditis. Donna would appreciate receiving emails from members with information and support. She is seeking a way to manage her husband's disease and also support for herself as a caregiver.

I think we all remember how stressful it was going from doctor to doctor in an effort to find answers. Once that answer is found .... it seems there is not a lot more information on arachnoiditis. This may be because precious few actual trials have been carried out for arachnoiditis. We, as patients, spouses, caregivers, and family need to work together to find ways to manage arachnoiditis and also to be able to support each other through this process.

Please email Donna at fivenich@comcast.net

Friday, March 6, 2009

National Pain Care Policy Act Approved

Our voices are being heard! The U.S. House of Representative’s Energy and Commerce Committee approved the National Pain Care Policy Act of 2009 (H.R. 756). The legislation will now move to the full House for consideration and then travel to the U.S. Senate!
If signed, the National Pain Care Policy Act of 2009 would combat pain by authorizing a Pain Consortium at the National Institutes of Health (NIH) to expand research on causes and treatments for pain; providing comprehensive pain care education and training for healthcare professionals; creating a national public awareness campaign on pain management; and by authorizing an Institute of Medicine conference on pain management. Taken from email sent by American Pain Foundation. See www.painfoundation.org for more information. Bill summary found at: http://www.painfoundation.org/Action/NPCPA2009Summary.pdf

Monday, March 2, 2009


How the Economic Stimulus Plan Affects Individuals with Disabilities

The $789 billion U.S. economic stimulus package, which was signed into law February 17 by President Barack Obama, contains numerous tax provisions including $282 billion in tax cuts. Several of the major tax provisions incorporated in the final bill include:

MAKING WORK PAY TAX CREDIT: Creates a "Making Work Pay" tax credit of $400 or 6.2% of earned income (whichever is less) per individual and $800 for a couple in 2009 and 2010. It is phased out for individuals with adjusted incomes over $75,000 and couples with incomes over $150,000. This credit is not included in income for purposes of any federal means-tested benefit program. It is included in resources but only after two months. The best and quickest way to benefit from this credit is to make sure that your employer decreases your withholding to reflect it.

ONE-TIME PAYMENT FOR SS BENEFICIARIES, VETERANS & RR RETIREES: Provides a one-time payment of $250 to Social Security beneficiaries, railroad retirees and veterans receiving benefits from the Veterans Affairs department. This is in addition to the Making Work Pay Tax Credit, and there is no tax return filing requirement to access this benefit. Beneficiaries will receive an electronic payment within 120 days of the Secretary of Treasury initiating the benefit. Payment will NOT count as a resource or income for SSI beneficiaries, thus making all beneficiaries eligible for the one-time payment.

STATE GOVERNMENT RETIREES ALSO ELIGIBLE FOR ONE-TIME PAYMENT: State government retirees not eligible for Social Security would also get the $250 payment. Also, Sec. 2202 provides for a $250 tax credit (refundable) to those federal and state retirees who worked at a time when their wages were not subject to Social Security payroll tax. They will have to file a return and this credit will reduce the amount they may qualify for under the Making Work Pay Credit, if the filers are still working. This group did not qualify for ESP payments last year based on their retirement pensions, which were not considered qualifying income(although they could have qualified based on income tax liability or other qualifying income).

EARNED INCOME TAX CREDIT INCREASE: Increases the earned income tax credit for low-income workers with three or more children.

EXPANSION OF CHILD TAX CREDIT: Expands eligibility for the $1000 refundable child tax credit to more low-income workers families that don’t make enough money to pay income taxes, reducing the income floor to $3,000 in 2009 and 2010 from the current floor of $8,500.

EDUCATIONAL EXPENSES: Provides a new $2,500 tax credit for college education expenses. The credit phases out for individuals earning more than $80,000 and couples with incomes over $160,000.

FIRST-TIME HOME BUYERS: Provides an $8,000 tax credit for first-time home buyers for homes purchased between Jan. 1 and Dec. 1, 2009. The tax credit phases out for individuals earning more than $75,000 and couples earning more than $150,000.

ALTERNATIVE MINIMUM TAX: Provides temporary relief from the alternative minimum tax for millions of middle-class taxpayers.

Allows small businesses with gross receipts of up to $15 million to write off 2008 losses against five previous tax years. Current law allows a two-year carry-back of losses.
Businesses will also be allowed to immediately write off more of their investments in computers and other equipment.
Gives a tax break on capital gains from the sale of stock held in a small business for more than five years.

Creates a new category of tax-preferred bonds for investment in economic recovery zones for job training, education and economic development.
Creates a new category of tax-preferred bonds for the construction, and repair of public schools and the purchase of land for schools.
Creates a federal subsidy for state and local governments offering bonds that give investors credits against their federal taxes in place of interest payments.

Additionally, the stimulus package included several additional forms of assistance beyond tax relief, including the following provisions:

Provides funding to the Secretary of Health & Human Services to support a study of the use of innovative technologies to assist the elderly, individuals with disabilities and their caregivers throughout the aging process.

Specifies that $90 million of the $650 million must be used for education and outreach, including grants to organizations for programs to educate vulnerable populations, including senior citizens, minority communities, people with disabilities, low-income individuals, and people living in rural areas. The funds can also be used to provide one-on-one assistance for installing the digital-to-analog converter boxes for these populations.

Criterion includes consideration of whether or not current infrastructure is inaccessible to people with disabilities.

For individuals who have lost their jobs from 1 September 2008 thru the end of 2009 and qualify to extend their health insurance benefits under COBRA, the government will cover 65% of the total cost of the employer premium for the first 9 months. Those who didn’t elect COBRA coverage at the time will have 60 days to enroll should they choose. However, COBRA is not available for people whose companies go out of business or drop the insurance.
$87 billion to support state Medicaid programs.

Gives the Secretary of Housing & Urban Development broad authority to waive legal requirements in the administration of housing programs under the Act, but prohibits the Secretary from waiving requirements related to fair housing, non-discrimination, labor standards, and the environment.
Ensures that recipients of HUD assistance via the economic stimulus package must honor Section 8 leases and cannot refuse to rent to Section 8 subpopulations.

All grantees must ensure that all infrastructure building projects are in compliance with Section 504 of Title 4 of the Workforce Investment Act of 1998.

Clarifies definition of “individuals with disabilities and business owned by individuals with disabilities” within Small Business Act to confirm the rights of disabled business owners to benefit from the tax credits afforded to small businesses (see above).

$12.2 billion, of which
$11.3 billion reserved for Section 611 of the IDEA
$400 million reserved for Section 619 of the IDEA
$500 million reserved for Part C of the IDEA

Individuals shall not be disqualified from regular unemployment compensation for separating from employment if that separation is for any compelling family reason, including the illness or disability of a member of the individual’s immediate family (as defined by the Secretary of Labor)
Those receiving unemployment benefits this year will not have to pay federal income taxes on the first $2400 they receive.

$680 million
$540 million for part B of Title I of the Rehabilitation Act
$140 million for parts Band C of Chapter 1 & 2 of Title VII of the Rehab act
$18.2 for state grants
$87.5 for independent living centers
$34.3 for services for older blind individuals
[i] In addition to reviewing the actual text from Division A & B of H.R. 1, The American Recovery & Reinvestment Act, recent information on tax provisions included in the legislation was further verified using the following sources: Reuters (13 February 2009); U.S. House of Representatives Appropriations Committee Executive Summary & Detailed Summaries (www.house.gov/appropriations); and the Joint Statement on Division B, U.S. House of Representatives Rules Committee (http://www.rules.house.gov/).
[ii] All programmatic assistance sections were verified upon review of the 12 February text of H.R. 1, The American Recovery & Reinvestment Act.

Info submitted by Jon McHann, Co-Founder

Cost of Prescriptions - Note from a Co-Founder

Dear Friends,

I researched the cost for my Soma at Costco versus Walgreens. At Costco, 100 pills cost $4 and change. At Walgreen's the same prescription was over $50. You do NOT have to be a member at Costco to buy prescriptions.

Costco does not carry some opiates and some other specialty medications but may be able to save you money. Understand that Walmart also has a program for $4 prescriptions. Check the store programs to see if it is cheaper to buy your prescriptions that way versus insurance! The stores won't tell you, but you can ask and determine which is the cheapest way to purchase prescriptions.

It is against the law in the U.S. to sell prescriptions that are governed federally at a private store. You won't get access to buy other products, but if you tell them at the door you are there to use the pharmacy, they should let you right in. Check out the savings.

We are not promoting any commercial retailers. We are NOT in ordinary times. Our Brothers and Sisters and caregivers need this type of information.

I would like to hear from any of you!

Jon McHann, Co-Founder

Americans with Disabilities Act (ADA)

The Americans with Disabilities Act (ADA) was signed by President George H. W. Bush on July 26, 1990. As a result of this landmark legislation, communities and workplaces across the nation have become more inclusive and welcoming for people with disabilities. Learn more about the disability rights movement by reading this fact sheet that can be downloaded in PDF or Word format.

This information has recently been updated, and can be read by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=7014

SSI or Social Security - American Recovery & Reinvestment Act of 2009

President Obama recently signed the American Recovery and Reinvestment Act of 2009. This act provides for the one-time payment of $250 to individuals who receive Supplemental Security Income (SSI) or Social Security benefits. Eligible beneficiaries should receive this payment no later than the first week of June 2009. The one-time payment will be a separate payment that will not be included in the regular monthly benefit payment.

This information has recently been updated, and can be read by visiting this link: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=165