Friday, December 31, 2010
Thursday, November 18, 2010
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.
Monday, October 25, 2010
Tuesday, October 19, 2010
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.
a. In 2014 Medicaid requirements will be expanded to include people who make incomes up to 133% of poverty.
Too much to tell; check out the video links for yourself.
Monday, October 4, 2010
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 know, nothing is free.
- Are people with sickle cell disease really getting help with Social Security disability red-tape, disabled employee rights assistance, or disabled student rights assistance?
- People with sickle cell disease in some cases Have TO work. Who helps them when they get fired for taking off work sick?
- People with sickle cell disease in some cases CAN’T work. How/what/where do they get SSA application help?
- 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.
Friday, September 3, 2010
September 22-25, 2010
Thursday, August 26, 2010
Monday, March 29, 2010
Thursday, February 25, 2010
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
Thursday, January 7, 2010
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.
- Stay positive. Your metal health is just as important as the person who is being cared for.
- Balance your life by taking breaks to do hobbies or things you love.
- Protect your health. (Put your mask on first, then help others) Get rest, eat well, and take vitamins.
- 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)
- Keep communication open and be patient. Pain affects people differently; they need your patience and kindness.
- 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.)