Accepting life as it is

Hmmm…. where to start. Today has been far from easy but I guess if all makes me stronger they say right? 

Start with the good news… I got the old gjtube out and new gjtube in that’s a start 🙂 

I met a really really sweet nurse today his name was Erin! He was awesome actually reminded me much of my husband. He was kind and caring and really all about the patient’s comfort and care before, during and after my procedure. But that’s how it’s suppose to be right? Well think again even though my morning started well and I now have a new tube which I hope will work good for me that’s not how all medical professionals handle their patients…. 

Today went from great and feeling optimistic and alive to crying on my knees for someone to just listen to me! Just listen to my concerns and care! I won’t get all into detail cause honestly it would be an hr long blog but if you follow me on fb it explains and sums it up pretty well. Let’s put it this way the doctors decide what procedures they think need to be done and if you disagree or don’t do you are seen as “non-compliant” the doctors decide how much pain you’re in and if you “deserve” to have a pain med to ease the pain and if you don’t agree or they don’t take care of you and you ask you are a “drug seeker”!!! The doctors decide wether you live or die and you spend your life begging to be treated with some damn respect begging for some relief and begging to live! Doctors(some not all, but I have ran into quit a few) don’t listen to the patients and advocate and treat you they are too busy making their paycheck! It’s sad I never thought that I would be literally on my knees begging for them to see how much I want to live and being told I was heading towards dying! I was always brought up that I was strong and could do everything everyone else does and that I would beat this illness that if I fought hard enough it could never catch me for long enough to kill me…. it’s sad but it’s just not reality sorry if this point sounds depressing but this needs to be said I had a doctor say another uncalled for thing to me today his words were…..

“I don’t know if I can get the doctor to come talk to you, you know they work their 9 to 5 then go home to their families” the sh** doctors say!?! R u fucking kidding me excuse my French!!! Honestly I’ve never felt like my legs were jello like this before, I literally fell to my knees! R u kidding “Go home to their families!!!! Really!!!! Do I go home to my family!?!? No I sit here in pain wondering if it’s worth it to ring that call bed to get that med that gives me relief for about an hr to an hr and a half and can’t have more for four to six hrs so you still sit in two to four hrs of pain in between…. If it’s worth it to call out when you need a nausea med and they come as they please and you decide it would be easier to just throw up to get a little relief then to beg for a nausea med that once again the doctors are not wanting to give…. Is this seriously life!?!

I’m sorry for this Depressing post! And I don’t mean to scare people who maybe aren’t as sick or haven’t went through this but it’s true and I honestly think it needs to be broadcasted and exposed so it can change! 

This is not how chronically ill patients should be treated and this is not okay! And I won’t stand for it and for all my cf mom’s who are following this blog please know you are strong and I did not write this to discourage anyone but this is the brutal truth as you get older and it needs to be addressed. And I plan to fight this tooth and nail until I can break through to these doctors and others who are chronically ill maybe won’t have to go through what I have…. honestly thinking I am thinking of taking legal stance on this. I won’t stop until I know no one else cfers or anyone who is chronically ill will be treated the way I have been treated I’m sure this is gonna be a big thing cause I don’t plan on stopping I will advocate until I take my last breath!!! 

Anyway I think that doctor felt bad for what he said once I responded the way I did one tear rolled down his face on the one side! Oh so you do have feelings in there doctor!!! 

I’m gonna go rest because I’m honestly in the most pain I’ve been in in a very very long time but I hope if any nurses or doctors or anyone in the medical field who is following my story and my life sees this I hope you think twice before you tell a patient they don’t have pain or you won’t treat their pain or before you make some sarcastic dumb comment like this doctor did IT HURTS WE HURT ENOUGH!!! 

Night all I have to sleep I am so sick so tired and lost my voice from screaming at this doctor for two hrs straight for the way I was being treated 

Goodnight to you all and I hope you all had a better day then me and again sorry if this post isn’t upbeat but I always keep it real and today was just one of those days 

The chronically ill girl