Shared Post: Stop misunderstanding and mismanagement of Sickle Cell Disease

https://www.change.org/p/stop-misunderstanding-and-mismanagement-of-sickle-cell-disease?utm_campaign=share_button_modal&utm_medium=facebook&utm_source=share_petition

How Apple Sidesteps Billions in Global Taxes

Read this, and ask yourself why the state of IL has to cut public aid funding for people like Marqus who suffer from a horrific, debilitating disease like Sickle Cell Disease, while companies like Apple can easily evade paying millions of dollars in taxes. Check yourself, Apple, because you're in the wrong. http://www.nytimes.com/2012/04/29/business/apples-tax-strategy-aims-at-low-tax-states-and-nations.html?_r=2&hp

New Book Offers Hope and Helpful Advice for Patients with Sickle Cell Disease

From Emory University's Woodruff Health Sciences Center. "New Book Offers Hope and Helpful Advice for Patients with Sickle Cell Disease." http://shared.web.emory.edu/whsc/news/releases/2011/06/new-book-offers-hope-and-helpful-advice-for-patients-with-sickle-cell-disease.html

Politics on the Mind

Politics may not be in the fore front of everyone's mind. Don't

be fooled by the grand standing and what the media shows us. Keep in mind unless one of these politicians experienced a life altering

Experience from illness they have no idea nor due they care.

Look at the senator that had a stroke,lots of Press coverage when he walks the Capital stairs to go back to work.

I will ask how many of our warriors had

State of the art rehab?

How many of our warriors are offered

Speech therapy, occupational therapy,

Hippo therapy, rehab so stellar they can walk up those stairs.?

After Marqus severe seizures we did the rehab.

Politicians set our laws supposedly to reflect the wishes of the people.

We are very busy holding down our responsibilities all while keeping our warriors here BUT take a minute and ask if the folks we vote for will make any difference.

It's on us to speak up and speak out.

My phone rang and they asked if I had questions for a local candidate. Of course I said yes ! Guess what they couldn't answer any of them instead I received the typical cookie cutter answers.

I'm still waiting to actually hear something professional from

our candidates.

I have heard the irrelevant, hateful nonsense that our kids would be sent to the principal 's office for.

Be sure to vote no matter what vote.

Ask questions anytime you get a chance and see if you get

answers.

No government is perfect no government will fully take care of

anyone but they shouldn't make our lives worse with infighting and nonsense.

I do realize that many folks also are not grateful for their

next sunrise because theirs it's not in question. - Mama Fran

Updates on Marqus' Condition: 1/28/2016 Hospitalization

They drop in the presence of any type of infection. He recognized the potential infection source - bladder and acted quickly. Despite antibiotics he still needs hydration beyond what he can consume by mouth.
Remember your kidneys also need water
to function properly. Avoid sugary drinks, caffeine , alcohol, fake sweeteners , food colouring and other things that stress the body.
Everything we put in our body is used then the excess is cleared.
Studies have shown that aspartame and many other chemicals and colourings have side effects.
By law certain chemicals are allowed but they are tested and the amounts pertain to servings. Most people do not eat or drink a serving of anything.
When is the last time anyone ate 1/2 to 3/4 cup of cereal? It's advertised as a bowl. Take home message Kidneys need WATER.

By the way Google Silly Putty in food and see what you get. Post your comments!! It surprised me and let's just say I plan to keep reading my labels. - Momma Fran Valentine

Updates on Marqus' Condition: Hospitalization 01/28/2016

So it will be lots of warm packs and elevation for that bruised puffy arm.
Then in the middle of our 2 hr dressing change for his wounds the second IV infiltrated . Now the entire arm looks puffy from hand to shoulder.
So, I am in the waiting room while they try a bedside PICC if that fails it's off to interventional radiology.
His Hg is 6.5 and he needs blood.
Good news the creatinine (kidney function test) is back to normal.
Auntie Yma came to the hospital this morning and held us up for prayer we really need that now. She gave us some wonderful Gospel songs to listen to.
Also my amazing friends at work donated 260 hrs of leave to me!!!
Without that I would have been forced to basically retire broke and before I'm ready. The other choice would have meant not being fully able to care for Marqus .
Ok well just an update ...will try not to be too battle weary. I know Marqus is pretty beat down worn out and frustrated .
So I'm praying for more strength. - Momma Fran

Updates on Marqus - Love Mama Fran

February 21, 2016

Hello Sickle Cell family.
Marqus is still going strong.
He had more teeth repaired .
He's made it thru another infection , more transfusions, RBC infiltrate, another PICC line , wound debridement, and now an upper respiratory virus.

Ok hang on before you say Oh my goodness , he still made it to get a hair cut, tried to fix a faucet , made it to part of service dog training class, started to somehow straighten his room a bit
and still asked me if my asthma was ok.

He never ceases to amaze me.
Looking forward to spring. We need warmth.

Sickle Cell warriors keep fighting
It's do what you can and be sure to take care of yourself in between.

Dear everyone,
A cough and sneeze can travel up to 13 feet. Use Kleenex, wash your hands , don't visit folks when your sick.
By the way , hand washing is SOAP and water while you scrub and sing happy birthday.

Oh I almost forgot NEVER EVER
Be shy about asking a health care person to wash their hands before touching you.

Love Mama Fran