Tuesday, October 13, 2009

Wonderful Water

Hi everyone !

I promise I will tell you about 3yrs old and the blow up birthday cake later.
Marqus made it to class today. His hips are painful but he has a cane.
I figure if you have to carry a cane it may as well look cool. We found a hand made one last year.

I want to share some tips for staying hydrated when you have Sickle Cell.

Just imagine cells that are shaped like c's trying to all squeeze thru your blood vessels and they stick together along the way.
If you are dehydrated your blood will be thick making it harder to circulate.

POP and SUGAR drinks will not help you.
You need good old H2O!!!

I know water is tasteless colorless and boring.
How about this?
Cut up some lemons add honey and pour it over ice ! Lemonade!
We found a fizzy powder called emergence at Sams Club it tastes great we sprinkle it in tonic water from Whole food.
Next pedilyte is not just for babies, try it when you start to feel dry.
Chill it in the fridge and just chug it!!!
Sometimes you just have to do it even if it tastes gross right? Whats the alternative dark urine
eyes more yellow lips dry feeling weakness.

Oh Wonderful Water we can find 101ways to drink you if it prevents an episode.
Did you know kidneys need fluid , again Wonderful Water!

When Marqus was small we had water races that was my husbands idea and it worked!!

One last thing alcoholic beverages like beer etc cause dehydration and stress your already stressed livers. AVOID them!

GOOD OLD WATER!!! Check it out!!!


I promise to send some pictures I just figured out how to blog LOL!!!

Remember "BREAK THE SICKLE CYCLE" pass this on.

Thank You

Friday, October 9, 2009

Home Sweet Home

Its always a relief when another sickle episode is over.

While Marqus is in the hospital it seems like life passes him by.

This time my husband was able to go to school for him.

He always appreciates everything that anyone does for him.

I remember when he had uncontrolled seizures and we thought he had another stroke.

His best friend Jake and his dad Angelo held him up and walked him into the school so he could attend class. In order to keep that second health insurance he had to be a fulltime student. At that time he was recovering from loss of a visual field and could barely walk.
Time doesnt stop when a loved one is ill .



On a happier note the cat dog and guinea pig are also very glad he's home.

We are a close bunch and miss each other.

I used to worry about the way the house looks etc. Ha HA life is too short to be so concerned with such things.

Most of the kids that come thru here remember the good food ,the laughs and fact that we care about them all.


My previous blog was intense . Sickle Cell is an intense subject.

You know what helps humor!

My husband can make a bad situation seem good. He has the abiltiy to make you laugh at the some of the darnest hours.
Marqus thinks he should do voice over for cartoons and I agree.



Here is the good news!!! This time last year Marqus collasped with another episode of acute chest syndrome.(thats when sickle cells block circulation to the lungs).

The treatment for this is a total volume exchange of the blood. He has had his blood exchanged 4 times and been on a ventilator(breathing machine) once.

This year we were a direct admit into the hospital he stayed less than a month and his port is not infected YEAH!!!
I am so grateful for every minute of everyday.


Remind me to blog about his 3rd birthday and the blow up plastic bithrday cake.



Thanks for reading BREAK the Sickle Cycle spread the word.

Tuesday, October 6, 2009

Please listen

Fw: from fran
Sunday, October 4, 2009 1:02 PM
:
Date: Sunday, October 4, 2009, 12:58 PM
Hi everyone!I haven't talked about this for a while but we are trying to complete a documentary on Marqus' life with Sickle Cell Anemia!Something we talk about all the time is the negative image this disease has due to the extreme pain associated with it.Some folks do not have the family , faith or friend support needed to survive this. Also some do not have the TOUGH love needed to prevent drug abuse!Marqus has both.Let me warn those entering the young adult world Managing this disease to stay alive is more than pain meds. Each time Sickle Cells block your circulation you are at risk of that body part DYING!!!YES THATS RIGHT lack of circulation to any body part will cause tissue and cellular DEATH!!!!ITS NOT just about the pain!!!!!!!!!!!!!!Marqus has struggled to stay alive.He was stupid and 18yrs old once !!!The hardest thing I ever had to do in my life was to say to him this"We have worked so hard to help maintain life and quality of life do you want to take yourself out with stupid teenage behavior drinking smoking misuse of pain meds???OR do you want to live and continue to make it?I offered to buy him a casket at cosco (yes they sell them) and drop him from my blue cross and blue shield.In our household you can call yourself a man when you take responsibility for your actions." Marqus talked to his doctors and had so many folks to aologize to.
ITS NOT JUST ABOUT THE PERSON WITH THE ILLNESS!!!!!!!!!!!!I reminded Marqus a long time ago that many many folks would cry over his grave.I am writing this today because Marqus told me about a kid that misused his pain meds.It has an effect on everyone with this illness when the actions of one are out of step.All folks can think about is how these kids are drug addicts.When we were at U of I several yrs ago he could not use a PCA because someone stole one.Now I hear that someone has again manipulated a PCA !!These drugs are dangerous when not used in the proper fashion.
Health care staff can lose their jobs if these meds are adminstered incorrectly.Sickle cell patients need support to cope .No matter what the illness is its still suffering and all that goes along with it Loneliness ,depression ,social isolation ,fear and the list goes on.Its beyond a full time job to manage this.Chasing dreams that may or may not happen and the sadness of loved ones always hoping the dreams will be fulfilled.You know whats hard hoping I never get a call at work saying "Im sorry Ms Valentine we did everything we could" !!!! We walk on faith every day!!!!!LISTEN to me we have suffered and it will not be in vain.This illness must have a VOICE!!!!Please pass this along and support our efforts its time.
Our society is plauged with drug abuse .SICKLE CELL patients have to fight to get the relief from pain they need and struggle to keep there body from dying!!!!!!!! All while breaking down sterotypes. This disease needs a face ,a voice ,national attention thats why the film.Pass this along to everyone you know .Lastly teens with this illness ask for help do not suffer in silence you can see a sunrise you can go to college you can live. Drowning yourself in over use of drugs will not help !!!!!!!!!!IT WILL KILL YOU.