Are wonderful… My nephew has learned so much in the short time we have had him. When he got here he said Wow and Tickle tickle (at 19 months he should have said much more). Now he says: Uh-oh, thank you, your welcome, choo choo, Ph Ph Ph (for please), aunty, the boys name, he throws out his hands for I don’t know and where is it (he), bye bye, I love you, hi, and sprout There are more, but it’s so wonderful to see him grow so much in this short time. He also ...<< MORE >>

How easy is it to get off track when you don’t monitor what you eat? VERY. I am going to start tracking again. I have noticed that if I don’t then I cannot accurately gauge what goes into my mouth on a daily basis. I want to keep this weight off and lose more and I can’t do it if I don’t keep track. ...<< MORE >>

I was gone for 2 days to Yuma, AZ – We accomplished what we set out to do, which was get my nephew out of the system and into our stable home. So now we are back into being caregivers of an 18 month old. The first thing we are doing is figuring out his schedule. Last night, due to getting home and having to get settled, we got him into the bath by 8pm and into bed by 8:45pm. We are hoping to change that time to bath at 7:30pm and bed by 8-8:15pm. That way we ...<< MORE >>

Okay so yeah I guess I am stressed out. Why? 1. Wedding is Sunday and I am having to work with every one’s schedules to be here by a certain time and to be there by a certain time. 2. My b-i-l is having major issues in another state and I am helping as much as I can by phone. (I’ve known him since he was 10 and he really is my brother, not just b-i-l) 3. There is a possibility that we will be temporarily watching his 2 1/2 year old, so we will need to ...<< MORE >>

So my workout schedule includes Saturday’s but in light of family events I was not able to workout. Sunday’s are my days off, but at 10pm I felt like I was cheating myself by not working out. So I popped in a DVD: Jillian Michael’s 30 Day Shred and got moving. Now, this DVD is no joke. I have been working out steadily since July and I can say that parts of this DVD kicked my butt. Apparently you do 10 days at Level 1, then 10 days at Level 2, and then 10 days at Level 3 ...<< MORE >>

I have changed the blog location to blog.afflictedwithrsd.com - Please update your bookmarks with the new info. Also, there is a new post on the blog.

I have changed my website too, but that will not be up yet. It will still be reached by going to AfflictedWithRSD.com

Hugs and thanks everyone.
...<< MORE >>

I recently received a comment from Tigerlily about her Caregiver website.
She too was on the lookout for sites relating to caregiving and was not able
to find what she needed. So she started her own.

Here is her website information:

http://caregiverscove.org

As always I only pass this information on because I feel it's important to.
You must choose for yourself if the information you find is relevant to your
needs. I can only pray that you find what you need on the various sites that
I have given.

Always pain free hugs,
Christine

http://afflictedwithrsd.com
http://blog.christineleiendecker.com

        

How can an act that feels so good, Cause a flare that feels so bad?

How do you handle it? Have you given up the act all together? I refuse. I
have given up so much for this pain (hiking, tent camping, etc) I cannot
give up something that deepens our connection to each other.

Let's just say that last night the pain started, no sleep, and has continued
into today. Hopefully the flare won't last too long.

Always pain free hugs,
Christine

http://afflictedwithrsd.com
http://blog.christineleiendecker.com

Search for a Cure
www.rsds.org
www.rsdhope.org

        

Thought this might be interesting to some of you. Email was received from
RSDS.org - Also, the links don't work. Just copy and paste them into the URL
address bar to open the links.

Hope all are doing okay. It's getting warmer, then colder, then warm again -
I am doing as well as I can in spite of the weather :)

*Study Finds That Rents for Modest Studio and 1-Bedroom Housing Units
Are Higher Than Monthly Income or People With Disabilities*

*FOR IMMEDIATE RELEASE*
April 13, 2009
1:43 PM

*CONTACT: National Low Income Housing Coalition

*Taylor Materio, Communications Associate
taylor@nlihc.org
Ph. 202-662-1530 x. 227
Study Finds That Rents for Modest Studio and 1-Bedroom Housing Units Are
Higher Than Monthly Income or People With Disabilities TAC and CCD Housing
Task Force release new study documenting extreme housing affordability
crisis for the most vulnerable people with disabilities

WASHINGTON-April 13, 2009-Across the United States in 2008, people with
disabilities with the lowest incomes faced an extreme housing affordability
crisis as rents for moderately priced studio and one-bedroom apartments
soared above their entire monthly income. The national average rent for a
one-bedroom unit climbed to $749 per month in 2008-higher than $667, the
average monthly income of over 4 million people with disabilities.

These shocking statistics are some of the important findings included
in *Priced
Out in 2008*-a study of the severe housing affordability problems of people
with disabilities who must survive on incomes far below the federal poverty
line. The study compares the federal Supplemental Security Income (SSI)
payments of people with serious and long-term disabilities to U.S.
Department of Housing and Urban Development (HUD) Fair Market Rents for
modestly priced rental units. *Priced Out* is published every two years by
the Technical Assistance Collaborative (TAC) and the Consortium for Citizens
with Disabilities (CCD) Housing Task Force to shine a spotlight on our
nation's most compelling - and least understood-housing affordability
crisis.

In 2008, 219 housing market areas across 41 states had modest one-bedroom
rents that exceeded 100 percent of monthly SSI, including 25 communities
with rents over 150 percent. Between 2006-2008, the number of market areas
with modest rents higher than SSI rose from 164 to 219-a 34 percent
increase. For the first time, there were 3 housing market areas - Honolulu
(HI), Columbia City (MD), and Nantucket County (MA)-where SSI recipients
needed to spend over 200 percent of their income for a modest 1-bedroom
housing unit-not only an impossibility, but absurd.

Perhaps the most shocking revelation in *Priced Out in 2008* is the
precipitous and relentless decline in housing affordability for SSI
recipients since 1998 when the first edition of *Priced Out* was developed.
The amount of monthly SSI income needed to rent a modest one-bedroom unit
has risen an astonishing 62 percent from 69 percent of SSI in 1998 to 112.1
percent of SSI in 2008. The root cause of the nation's most severe-and most
hidden-housing crisis is clearly revealed in the painful statistics included
in the 2008 edition of *Priced Out*.

As stated by Congressman Barney Frank in the Foreword to *Priced Out*, "The
lack of adequate housing is a serious obstacle to a decent life for anyone.
It can be particularly troublesome for people dealing with disabilities, for
whom the physical and emotional stress of a lack of decent shelter are added
burdens for people already doing their best to deal with difficulty."

Discretionary state SSI supplements provided by states are *not* the
solution to the housing affordability problems experienced by people with
disabilities living on SSI payments. Even in the State of Alaska-which had
the highest state SSI supplement in 2008 of $362 and a total monthly SSI
payment of $999-people with disabilities receiving SSI still needed to pay
80.6 percent of their monthly income to rent a modest one-bedroom unit.

While some progress has been made by Federal officials responding to
creating additional affordable housing resources, a bolder action is
essential to inaugurate a new era in housing policy that places the housing
needs of people with disabilities within the mainstream of national housing
policy. TAC and the CCD Housing Task Force urge the federal government to
take the following actions:

- Enact Section 811 legislation that will create at least 5,000 new units
of permanent supportive housing each year.
- Provide 10,000 new Housing Choice Vouchers for People with Disabilities
in HUD's annual budget.
- Support the Administration's proposal to appropriate at least $1
billion in funding for the National Affordable Housing Trust Fund.
- Remove Barriers to Permanent Supportive Housing in the LIHTC Program.
- Facilitate a Coordinated Disability Housing Policy Across the Federal
Government.
- Reinvigorate Fair Housing Enforcement.

By implementing these recommendations, the federal government will send a
powerful message of inclusion to state and local communities, along with the
housing resources necessary to finally begin to achieve the vision of
community integration for people with disabilities first articulated almost
20 years ago through the ADA.

A copy of *Priced Out in 2008 *can be found online at *
http://www.tacinc.org/pubs/pricedout/2008.html
*. For more information about *Priced Out*, please contact Emily Cooper at
ecooper@tacinc.org or (617) 266-5657 x123.
The National Low Income Housing Coalition is dedicated solely to ending
America's affordable housing crisis. Established in 1974 by Cushing N.
Dolbeare, NLIHC educates, organizes and advocates to ensure decent,
affordable housing within healthy neighborhoods for everyone. NLIHC provides
up-to-date information, formulates policy and educates the public on housing
needs and the strategies for solutions.

http://rsds.org/5/news/2009/April/NLIHC_30_178.html




*This E-alert was made possible by the contribution of the members of the
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more
about becoming a member of RSDSA, please click
here.
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*RSDSA at the 2009 Achilles Walk for Hope & Possibility in NYC*
*June 28, 2009 | Central Park
**Online Registration and Forms are now available!
*
* *
Walker and Virtual Walker Registration Available

*Click here for more
information
*
* Team **Co-captains: Jackie Drake and Marsha Tyszler*
Since RSDSA promotes public and professional awareness of CRPS, a neurologic
syndrome characterized by severe and persistent pain that can lead to
disability, we are charged with educating those afflicted with the syndrome,
their families, friends, insurance and healthcare providers about the
potentially-disabling pain it causes.

We have teams in the Achilles Walk for Hope & Possibility to promote
awareness and encourage support for people with CRPS and their family and
friends. Our participation highlights the disabling part of the syndrome and
offers hope to those who suffer from it.

You can participate in the walk and raise pledges, or put together a
corporate team. Perhaps your company has a matching funds arrangement for
not-for-profit fundraising events. Visit the website or contact us to get
started!


http://rsds.org/4/awareness/Achilles/2009/nyc.html

* *
*This E-alert was made possible by the contribution of the members of the
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more
about becoming a member of RSDSA, please click
here.
* *RSDSA Privacy
Policy
* *RSDSA Home
Page
*


RSDSA | 99 Cherry St. | Milford | CT | 06460