2011 - Be Well - Stay Well

Have a blessed and healthy new year!!!!!

I'm Thankful

After the toughest year of my life, I’m thankful.
I could list the events for all to see, only to reveal the true depth of my loss and pain.
I could relive them; just to remind myself how far I’ve come.
But what I am is just thankful.
For loved ones young and old, wise and foolish, all enriching my life.
For that special one, deep inside my inner circle warming my soul.
For the knowledge that I exist, and it is good.
For the design creator of a perfect universe.
For His endless creations that confirm, we are not all there is.
For the burnt orange sunsets I see each day.
For waterfalls, flowing wondrous life giving water.
For seagull’s that fly over the beauty of the ocean
For this day my daily bread, I am thankful.

Happy Thanksgiving!!!!

Calling All Front Line Soldiers

I love this video...we're fighting this sickle cell battle together!!!!!!!!




Check it out.
http://scdsoldiernetwork.com/home
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Health Care Reform & Us

Affordable Care Act (U.S. health reform)

Historically, people with disabilities have been severely disadvantaged in accessing private health insurance, discriminated based on pre-existing conditions, with limits and exclusions of benefits, and at risk of losing coverage on short notice.

In 2014, according to the Affordable Care Act (Obama’s health care reform) if you have a pre-existing condition it will be against the law to discriminate you for having a pre-existing health condition.

The Supreme Court also determined (relating to the Olmstead v. LC Supreme Court decision) that Medicaid benefits are a civil rights issue and that disabled people have a right to expanded benefits too.

So, the Affordable Care Act also addressed Medicaid’s institutional bias – which allowed coverage of home and community based long term care services/supports (but) required coverage of nursing home services -- keeping too many people with disabilities in nursing homes, despite their preference for and cost-savings for them to be in community living (at home).

Also, the Affordable Care Act addressed:

1. For people working & determined by insurance companies to be high risk (with pre-existing conditions) and are currently denied coverage, these people will be helped to purchase insurance.

2. For unemployed or low income people they will continue to have Medicaid with expanded benefits.
a. In 2014 Medicaid requirements will be expanded to include people who make incomes up to 133% of poverty.

b. More people will be eligible, it will be easier to get, and more prevention care benefits allowed.

c. SSA’s standard of disability is too strict now; Medicaid changes will allow disabled people who don’t meet SSA’s standard of disability to still get Medicaid heath care benefits.

Too much to tell; check out the video links for yourself.

Health & Human Services - http://www.hhs.gov/od/index.html

What the Affordable Care Act Means for Americans with Disabilities http://www.healthreform.gov/forums/blog/disabilities.html

Health Reform & Americans with Disabilities http://www.youtube.com/watch?v=ccKQNklpCWg&feature=player_embedded

All Video Chats - http://www.healthreform.gov/forums/videochats/index.html

Who's Really Helping Us?

A study conducted by Kenneth R. Bridges, M.D. of the Joint Center for Sickle Cell and Thalassemic Disorders identified issues that affect people with SCD as:

Under-education - Under-employment - Medical bureaucracy - Basics of Living - Depression - Antisocial - self-destructive behavior.

I agree with all of these findings. What I want to know is anyone really helping people with sickle cell?

I’ve seen web site after web site telling us what they’re doing for people with sickle cell AND asking for donations.

I know, nothing is free.

But my questions are:

1. Are people with sickle cell disease really getting help with Social Security disability red-tape, disabled employee rights assistance, or disabled student rights assistance?
   


2. People with sickle cell disease in some cases Have TO work. Who helps them when they get fired for taking off work sick?
   


3. People with sickle cell disease in some cases CAN’T work. How/what/where do they get SSA application help?
   


4. People with sickle cell disease in some cases are depressed, lonely, in pain and live alone. Who is really giving “hands on” help?

I have more questions than answers.

I looked all over the web for some examples of people doing (hands-on) things for people with SCD and I found a few. I will profile these people/organizations in future blogs.

September - Sickle Cell Disease Awareness Month

SCDAA 38th Annual Convention
Washington, D.C.
September 22-25, 2010

Giving New Voice to Sickle Cell Disease

~100 Years of Recognition

Gaylord National Hotel and Conference Center, Washington D.C.

For more information go to Sickle Cell Disease Association of America:

http://www.scdaaconvention.com/

or

http://www.sicklecelldisease.org/

One More Voice

Not Dead Yet!

Everytime I'd call my mother and ask how she was doing she'd say, "I'm not dead yet!" Her response used to hurt my feelings because I was really concerned about her wellbeing.

Well, I have been out of touch for a while. My personal life was on a one-way ticket to no where. But after the dust has settled, I must say as mama did, I'm not dead yet!

I say this with a smile, a wink and hope that my path will level off and have smooth sailing.

I will continue to be an advocate for health, an example of living beyond pain and one of many voices for people living with Sickle Cell Disease (yes, in all caps!).

An Example for Sickle Cell Treatment at the University of Illinois

The University of Illinois Medical Center at Chicago has housed a sickle cell center for adults for the past 25 years. Recently, in efforts to support patients throughout life and debunk myths about the condition, it has opened a new acute care treatment center to manage uncomplicated pain crisis.

In the past, chronic pain treatment associated with sickle cell disease was coupled with the lack of knowledge, racial discrimination and repeated emergency department visits that contributed to a troubled relationship between patients and nurses.

Boney Johnson MSN, RN at the Center said ‘It wasn't until she began a sickle cell support group and engaged with patients during healthy moments that she realized the degree of misunderstanding that exists when sickle cell disease is mentioned.’ Johnson also noted, “The emergency department was the biggest fear for a patient with sickle cell disease because they have to wait so long to be seen. The patients also feel confronted by unwanted bias in the emergency department.”

She notes, “Our purpose with the acute care center is to provide them with immediate treatment for pain." According to a recent article by Robin Hocevar, “A generation ago, the idea of even having an adult unit for patients with sickle cell disease was unheard of. According to the Sickle Cell Disease Association, the average life expectancy for patients with sickle cell disease is on the increase and currently stands in the mid-40s.”

The University of Chicago has responded to the needs of their community with 85 percent of the state's residents with sickle cell disease that have Cook County address.

Bravo!!!! University of Illinois Medical Center….let others follow your lead.

Check out article. http://nursing.advanceweb.com/Regional-Articles/Features/Sickle-Cell-Disease.aspx?prg=19

Sickle Cell Trait

We’ve heard the stories about football players being tested for sickle cell disease after players died in Florida and Ohio. These players never knew they had sickle cell disease because they never showed any outward signs.

After strenuous exertion, extremes temperatures and dehydration, these players died. Some of their families were blamed for not telling coaches that they had this disease. The problem was that no one in their family knew they had sickle cell trait. They inherited only one (SC) cell from only one parent. With no outward signs, these carriers of SC genes went undetected.

After NCAA implemented testing athletes for sickle cell, there was uproar as the testing was called “targeted”. People who debated this testing of athletes were missing an important point. Testing for sickle cell is part of a solution not a problem.

As with my “white looking” niece, she was reluctantly tested and found to be a sickle cell trait carrier. I say “Information is power.” My niece now has the information to make informed decisions about marriage, family, and her health maintenance.

So, a person with sickle cell trait (a carrier of one SC gene) must be aware. Extremes in temperature, stresses on the body, infections and dehydration can be life threatening. Add another carrier, have a baby, and now you have a child with a life of suffering…….just ask me and my friends at http://sikcell.ning.com

Avoiding Caregiver Burnout

A recent article in the American Pain Foundation’s newsletter was entitled “Avoiding Caregiver Burnout”. This title reminded me of my caregivers. They were first my mother, now my husband and soon to be my children.

I thought about these people, who did not ask for the job, and what they must be feeling while I’m in the hospital getting blood and morphine pumped into my veins. They sit in hospital rooms, doctor’s offices and watch while I suffer. Their lives are affected by Sickle Cell Disease as much as mine is.

Before reading the Pain Foundation’s article, I personally imagined that caregiver burnout must surely be a reality for some people dealing with sick family and friends. Working full-time just adds more stress to this situation.

Here’s what the Pain Foundation suggests to reduce caregiver burnout:

1. Stay positive. Your metal health is just as important as the person who is being cared for.
2. Balance your life by taking breaks to do hobbies or things you love.
3. Protect your health. (Put your mask on first, then help others) Get rest, eat well, and take vitamins.
4. Seek out help. There are support groups and resources for information. Know what you can do and acknowledge what you can’t. (ask for help)
5. Keep communication open and be patient. Pain affects people differently; they need your patience and kindness.
6. If people offer help, have a list ready of what needs to be done. (Grocery shopping, help cooking, cleaning the house, or raking the yard.)
   

There is no shame in asking for help from family members, church members or neighbors. People who see you care for a sick loved one will jump in to help….don’t be afraid to ask

Resources:

http://www.familycaregiver.org/

http://www.painfoundation.org/

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