Author: Maria
Live a Life Worth Living
“I think if there’s anything that anyone gets out of my story and what I’m trying to say is that you don’t have to get rid of the pain and the suffering in order to live lives that we’re really proud of. We don’t need to erase it. We need to find a way to actually make something of it and relate to it. And I think that applies to being sick and also applies to life in general for people.” – Claire Wineland
To say that our lives are blessed by the presence of angels is to believe in life after death, to believe in a higher power. Some of those angels are unseen, felt but unseen. And some of those angels are born into extraordinary lives. Claire Wineland is one of those angels.
She, like many of us, was born with a genetic lung disease called Cystic Fibrosis. She was told she was not going to live past the age of 5, then 10, then 15, then 20. As advances in the care and treatment of Cystic Fibrosis made it more feasible for her lungs to hold on, her life expectancy would move up the scale. At age 13, she was scheduled for a routine operation, one of many that us CF’ers have to endure, when she caught a blood infection that landed her in a medically induced coma and forced to be on an oscillator because the respirator failed for her. Only 1% of patients put on an oscillator ever make it out of one, and no one with cystic fibrosis had ever made it out prior to her.
Read more
Organizing Your Health Care
It is very important to be able to organize your health care so that you are always prepared going to all the different doctors and hospitals that become a part of our daily life with Cystic Fibrosis.
First and foremost, I can speak from personal experience that having a great CF team can mean the difference between struggling and thriving. My pediatric care was exceptional and since my original pulmonologist passed away I haven’t found another center that was as understanding or as caring, especially since I have a-typical CF (a very rare gene mutation R177H). Since moving to Long Island, I can say that not many pulmonologists will take patients with CF; I have been turned down by so many. So you have to seek out the team that will work with you as an adult as not all pediatric centers will take adults. The Cystic Fibrosis Foundation will surely have a list of doctors that can work with you.
Read more
A Degenerative Illness
By no means is Cystic Fibrosis not a degradation of pulmonary function because that’s actually exactly what it is. But that part of the definition, the part that says “degenerative”, doesn’t necessarily have to mean a degraded life or a life “less” lived. I have done some amazing things with the lungs I’ve been given. And that’s mostly due to the diligence of my parents’ care for me and God’s amazing work.
The major presentations that I suffer are of course in my lungs, where I always feel like there is an elephant sitting on my chest and I am constantly fighting lung infections, but lately (in the last year, year and a half) I’ve been seeing more pancreatic presentations and sinus presentations. I of course have pretty bad skin and its really salty to the taste and sticky to the touch and the absorption of nutrients is impacted; in me not as badly as some other folks I know with CF. I can usually supplement just enough with extra vitamins and minerals.Â
Read more
Earth and Sky
What is a mother?
Many will say she’s a creator.
Many will say there is no other.
I say she’s a gift, of value no greater.
Like the Earth is a gift,
One that gives life,
A seed that’s planted and enriched,
One that grows despite the strife,
Read more