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As a warning, this going to be a very redundant, thing...? It's going to have negatives, a lot but hopefully some good can come of this.
So let's start at the beginning.
I was born with Cystic Fibrosis, a genetic and terminal disease, that is permanent, at least now. No cure whatsoever. Not even, "aren't there treatments that gets rid of it for a while or keep it at bay? Like cancer!" No. There isn't and this isn't like cancer or asthma.
Although I feel for asthmatics.
It's sad that a majority of the time when people ask what's wrong with me or if I need my rescue inhaler, that most the time when I say CF and they don't get it; or are outrageously callous with their words. I resort to cancer and the, "Oh I'm sorry you're so strong."
It's sad. It's sad that a lot of informative websites make it sounds CF isn't that bad. "It's just thick mucus that causes a lot of infections."
It's so much more than that.
Anyway basically our whole body has a vendetta against us and wants more than our lunch money everyday, even on weekends.
And what's worse; as I'm sitting in a bathroom dealing with said CF problems, my family is watching a funny movie, and I'm missing it.
I missed so much. And I'm only 23 and if you ask me what I did in highschool or how many boyfriends have I had, I wouldn't have an answer to satisfy you.
I missed most of school, trying to live. "Boyfriends" we're a short term thing. Not that I made it, it just happened like any other relationships, but this disease, is a rotten core.
I barely graduated. Partly because I suck at school lol it's not for me.
That brings another topic!
Careers! I know many CFers who are very successful and to you guys, HELL YEAH! You are so lucky! So proud! Really.
I personally wanted to work in law enforcement, in anything regarding it. I've seen a morgue and a station. My father is a Chief in the Air Force, playing Galaga with people who threaten the US. I wanted to follow him.
Sadly I cannot.
I have tried getting a job. I had one! That I loved with all my heart, mascoting. Seriously! I was a little jalapeño running around a baseball stadium for kids. It was great. But CF progressed. And let me tell you, mascoting is hard, fun but hard work. Any other job I've tried, turned down for my condition, or I can't work with food, chemicals. Even treatments aren't allowed during most breaks in most jobs, as it can endanger other workers. I can't do school again. I got sick more times in school than I did during the summer running around.
And speaking of pain, it's a constant. Constant sinus pain, lung, stomach, and muscles. It's all very painful.
The worst of it is when you have a coughing fit and it doesn't stop. At that point you're like a fish out of water gasping for air.
But honestly I can go through all physical pain.... it's temporary. What's not its what I put my friends, family, and even myself through.
CF is horrendously expensive. It doesn't surprise me that CFers don't live very long, not with how expensive it is. Some of them can't afford daily meds, hospital stays. It horrifying. And my family and I thought, "We are in the military, we are so lucky. We will be fine."
We were so wrong.
At my hospital, a military hospital, they have nearly killed me several times. Because they refused to listen to me and look at my allergies or just look in my records in general. I have taken oxygen level tests and they have been under 90, and by law under 90 they are supposed to give me oxygen, well they refuse saying I'm faking it. The worst is, they won't let me go even after I requested a referral, begging. If they did the hospital has to look into "why?"
And I have written several complaints against my doctor. And my doctor is VERY aware of that.
Hence why they won't let me go. But here is the kicker, they haven't called me for an appointment in 6 months after I told them I wanted to move on. How messed up is that? That they can get away with leaving a specialty care patient hanging.
It's them pretty much saying, "If we can't have this patient, then no one can."
It should be against the law.
I can switched to tricare standard, but that means I have to pay more than 10%. Now that might not sound bad. Well on average for daily medication, and I can't take the normal stuff, it's roughly $100,000 + a month.
I don't have that money and neither does my family. And that's the rest of my living life! No oh maybe in a year or so it'll be better, like chemo. Nope! If my docs would write said refferal I wouldn't have to switch standard and give up ALL hope of ever living on my own.
Because I posted this on tumblr, I feel strongly about this... I'm at my limit of tolerance and I refuse to give up.
No one tells you or warns you about what's to come.
No one tells you or in most cases warn you about ADULT CF CARE. And this goes to parents of CFers as well.
Now I'm sure a good chunk of us can say pediatrics is good. And for maybe another chunk of some amount have wonderful adult care.
But in short, here is a summed up story of mine and many others.
It starts in pediatrics, you begin to trust your doctor and build a relationship that benefits your health.
What they don't tell you, is when you get into adult care, your health drops dramatically. It used to be your opinions and observations of your own body contributed to your health. But as soon as adult care swoops in, you're nothing but a number and everything for your health care is based on statistics and studies. And solely based on that. Not on you.
In my experience, they refuse to look at history from when I was in peds, what worked at the time. They stopped what peds was doing immediately and they don't know why I'm not getting better.
My medication isn't working anymore and I've asked let's try something new and different. They give me something I'm highly allergic too. And when I speak up the answer I get is, "Not like you're giving us many options now is it?"
They don't warn you, to be prepared to fight for your life and right to live. They don't warn you that it's an uphill battle just to have a doctor listen to you about something is wrong. And you can't get a second opinion or referral to a clinic downtown. You're not allowed.
They don't tell you. That you will have a feeling of udder hopelessness as you watch yourself slipping.
They don't tell you, it's all about money.
Not your life.
That you're at the mercy of those who don't really care, or at least show lack thereof.
Maybe just having CF isn't the only reason the average is 30 yrs.
This should and needs to change.
I proved them wrong.
Well it’s literally a year after I’ve added to this. I stopped writing this around September 2016. It’s now a little over a year since then.
I’m proud. I’m grateful. And I proved them wrong!
The doctor stated previously was canned and I had received a whole new team. Thank the gods. But I am sad to say the unfortunate events didn’t stop. The new doctors tried their best to reverse what had been done, they were not successful.
In October of 2016 I was hospitalized, and put on two forms of life support. ECMO, I was too weak for it to be in the usual spot of the neck so, they put it in my legs. I also had that tube in your throat. It was not looking good. Sometime after Thanksgiving I was given ten days to live.
I was not going to die, I refused. They only checked local transplant centers and pretty much gave up after the rejected me. They didn’t even try reaching to others states. They were giving up on me...
But a miracle happened, my uncle, Peter Mayhew; actor for Chewbacca in Star Wars, took to social media a roared for me. So anyone who could help could, if able.
And they were successful! Doctors in Los Angeles, CA at UCLA, accepted me and I was transferred from Texas to there on a military C130. On December 27 I received both of my lungs!
I know this had a rocky beginning, but those who feel there is no hope, please, don’t give up! Fight with everything you got and don’t let anyone tell you otherwise. Don’t be afraid to reach out.
Don’t be at the mercy of others, grab your life and take it by the reins.