http://hhsca.org/
This Chicago-based, Sickle Cell Disease Organization rocks!! We just met
them this past weekend and we love them and their message and outreach.
Monday, March 7, 2016
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
Wednesday, March 2, 2016
Politics on the Mind
Politics may not be in the fore front of everyone's mind. Don't
I'm still waiting to actually hear something professional from
I do realize that many folks also are not grateful for their
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.
next sunrise because theirs it's not in question. - Mama Fran
Sunday, February 28, 2016
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.
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.
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.
and still asked me if my asthma was ok.
He never ceases to amaze me.
Looking forward to spring. We need warmth.
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.
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.
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.
Be shy about asking a health care person to wash their hands before touching you.
Love Mama Fran
Sunday, January 24, 2016
Welcome Back to the Blog
Hello and thank you in advance for allowing me to share with you.
I can't believe the last blog was in 2013. Time flies by like the speed of light .
We have a lot to share Sickle Cell has a new momentum and hopefully our story
is an inspiration for everyone to push ahead for new research, new drugs unique to us , new legislation, inclusion in policies, push the envelope for a cure and recognition for our strength
often in the face of adversity. We will move forward from "oh yeah I think I had a cousin with that"
to knowing our status ,understanding genetics , speaking with the authority this life threatening disease commands.
February 2016 will mark 2 years since our participation in the FDA public hearing for persons with sickle cell disease. The experience was life changing. Until that moment in time we had not been
in the same space with thousands of stakeholders for sickle cell disease. The hearing was not only live in Silver Springs MD but comments were taken by computer and by phone from across the USA.
There is strength in numbers but in addition to numbers there is power in knowledge .
I urge all persons , friends , family , stakeholders anyone who cares about someone with Sickle Cell Anemia to understand the science.
Learn the terminology, the condition and potential complications know where to find answers and
if anything is remiss keep questioning .
Over five years ago Marqus had a dream to make a film a documentary about Sickle Cell
not because he was seeking 5 minutes of fame but rather he felt there was a need for the story to be told.
Marqus is now 32 years old and in the years from dream to reality many changes have occurred many
challenges have crossed our path.
As we fill the pages and the screen with our life even the messy painful terrifying stuff
plus the joys , triumphs and accomplishments please follow , join us on the renewed journey.
We will continue to share as well as honor those that are not here to see the films completion.
Life comes with no guarantee no specific road map, no matter how hard we try to make one as humans.
We plan , save , have lists , goals , spread sheets, insurance , retirement , education, work, vacation, build relationships , lose relationships and so much in between . Despite our best efforts still no guarantee and what better teacher than a person whose mortality is in question.
Early on we had to brace for the question will Marqus grow up ? Then we realized that we can't truly live in that dark place. Instead we chose to be grateful for each sunrise push forward and embrace
things that may seem trivial to some.
Please don't get me wrong having a disease that wages a war on each and every part of the body
is hell. As a mother and a RN of 38 years I would be lying if I didn't tell you how my heart brakes with each damaged body part and with each complication .
BUT none of us will succumb to any form of despair. Marqus from day one had to be tough
and we have to be tough with him and for each other.
Right now in real time the thought crosses my mind will the documentary be finished
while we have another sunrise. I fight this thought by stepping out on faith and working to lessen complications that can be controlled. We know that as we watch him walk, ride a horse in therapy , go to dog training class for his service dogs to be, work with his sister and brother and others on the film, smile, laugh and have consideration for others despite non healing painful wounds on both ankles with his Oxygen strapped to his back that we have to stay tough , stay the course we can not and will not buckle. He fights for his life and we are with him. There are so many Warriors just like Marqus. Since the inception of the dream and all the changes along the way Marqus has endured many insults to his body. We are in recovery mode again and are working to renew our spirits .
Stick with us ,follow us ,we thank you so much. There is more to come and much more work to do.
Luv Mama Fran
I can't believe the last blog was in 2013. Time flies by like the speed of light .
We have a lot to share Sickle Cell has a new momentum and hopefully our story
is an inspiration for everyone to push ahead for new research, new drugs unique to us , new legislation, inclusion in policies, push the envelope for a cure and recognition for our strength
often in the face of adversity. We will move forward from "oh yeah I think I had a cousin with that"
to knowing our status ,understanding genetics , speaking with the authority this life threatening disease commands.
February 2016 will mark 2 years since our participation in the FDA public hearing for persons with sickle cell disease. The experience was life changing. Until that moment in time we had not been
in the same space with thousands of stakeholders for sickle cell disease. The hearing was not only live in Silver Springs MD but comments were taken by computer and by phone from across the USA.
There is strength in numbers but in addition to numbers there is power in knowledge .
I urge all persons , friends , family , stakeholders anyone who cares about someone with Sickle Cell Anemia to understand the science.
Learn the terminology, the condition and potential complications know where to find answers and
if anything is remiss keep questioning .
Over five years ago Marqus had a dream to make a film a documentary about Sickle Cell
not because he was seeking 5 minutes of fame but rather he felt there was a need for the story to be told.
Marqus is now 32 years old and in the years from dream to reality many changes have occurred many
challenges have crossed our path.
As we fill the pages and the screen with our life even the messy painful terrifying stuff
plus the joys , triumphs and accomplishments please follow , join us on the renewed journey.
We will continue to share as well as honor those that are not here to see the films completion.
Life comes with no guarantee no specific road map, no matter how hard we try to make one as humans.
We plan , save , have lists , goals , spread sheets, insurance , retirement , education, work, vacation, build relationships , lose relationships and so much in between . Despite our best efforts still no guarantee and what better teacher than a person whose mortality is in question.
Early on we had to brace for the question will Marqus grow up ? Then we realized that we can't truly live in that dark place. Instead we chose to be grateful for each sunrise push forward and embrace
things that may seem trivial to some.
Please don't get me wrong having a disease that wages a war on each and every part of the body
is hell. As a mother and a RN of 38 years I would be lying if I didn't tell you how my heart brakes with each damaged body part and with each complication .
BUT none of us will succumb to any form of despair. Marqus from day one had to be tough
and we have to be tough with him and for each other.
Right now in real time the thought crosses my mind will the documentary be finished
while we have another sunrise. I fight this thought by stepping out on faith and working to lessen complications that can be controlled. We know that as we watch him walk, ride a horse in therapy , go to dog training class for his service dogs to be, work with his sister and brother and others on the film, smile, laugh and have consideration for others despite non healing painful wounds on both ankles with his Oxygen strapped to his back that we have to stay tough , stay the course we can not and will not buckle. He fights for his life and we are with him. There are so many Warriors just like Marqus. Since the inception of the dream and all the changes along the way Marqus has endured many insults to his body. We are in recovery mode again and are working to renew our spirits .
Stick with us ,follow us ,we thank you so much. There is more to come and much more work to do.
Luv Mama Fran
Monday, January 4, 2016
Photo: Nothing keeps a warrior down!
Nothing keeps a warrior down. Not even leg wounds and no boots to fit! My hero.
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