And the award for best actress goes to.....

O wait, this isn't an awards show? I was looking for my award of best actress in a lupus drama series for best portrayal of a healthy person for 25 years. Its a hard number to sink in, 25 years. I turned 40 this year which was also irony because I was never supposed to see it, but here we are. Everything changed on July 29th, 1998. But sometimes change isn't all bad. I mean almost dying of kidney failure and having your doctor tell you if he was a betting man and this were a horse race he wouldn't have picked you to survive. Gee thanks doc. But here I am. Can't kill bad grass I guess. No not really. 

I feel like there should be some kind of Prize or something when you make it 25 years with the thing that was supposed to kill you. I mean technically I should have been dead about five times already, but who's counting. Getting a disease like this is life-changing. There is a definitive before and after and things are never the same. I thought I wanted a military career and a house and family and kids and all that stuff that you are supposed to want. But things happen and life changes and all of a sudden you are living a new life. I guess there's something to be said about beating the odds. For me it's a little bit of tell me I can't do something and I'm going to prove you wrong and show you that I can. Even after all this time, it's still hard to wrap my brain around that I have had this disease for 25 years since I was 16 years old and I have lived most of my life like this, in pain than I have not in pain. Everyday is a fight. Every single day and don't let anybody else tell you otherwise. On your good days you feel on top of the world and like you can conquer it all. On your bad days you are frustrated and angry that this disease has decided to rare its head at the most inopportune moment. I've learned a lot over 25 years. I've learned that some people see past your disability, and others can't see past the tip of their nose. But you learn to ignore those people and prove them all wrong. I learned that when you feel your weakest is when your life is about to change into something better that you could have never even dreamed of. If someone would have told that 16-year-old kid who thought she was going to die that 25 years later she would be living the life she always dreamed of. Living in a beautiful house by the beach, a good solid job one that makes her insanely crazy half the time but a good job nonetheless, and a unicorn for a partner that loves me. Not a literal one although that would be cool. But being able to do life with someone you can't imagine it without and for the first time in a long time it makes you happy that you survived all those things that were supposed to kill you. Its Makes all the hell you went through worth it. It's been a stressful week for me of I'm being honest and of course my lupus has been raging for the past 3 days. Listening to my body and actually resting is the hardest thing in the world. Especially now since half my life is still in boxes and for the first time ever I'm living instead of just surviving. Its been a wild ride to be honest. I learned in life you have to play the cards you were delt, Good, bad or otherwise. If I've become good at anything in life it was roll with the punches. You'll need a few things to make it in life especially with lupus.  A back bone, a funny bone and am unshakable will and drive to survive. If you can master those 3 you can conquer the world. So thats my plan for this year. Live life more than I ever have and not let this thing called lupus take me down. Now let me got find a cupcake and blow out a damn candle and celebrate survival. 

Welcome to 1942

Welcome to 1942! Oh wait, this isn't 1942, its 2022. But somehow we have gone back in time and woken up in a nightmare, or at least its a nightmare if you are a woman. In case you're wondering where this blog stands its on the side of women being able to make decisions about their own body. Spare me the political argument of well its better that its left up to the states. Really ? Its better that I have to travel hundreds of miles away from my home just to get  medical care? Yea get outta here with that nonsense.

I never thought trying to get basic medical care would turn into an all out war but here we are. Pick your side and draw the line cuz this isn't one of those things you can just sit and watch happen. I recently tried to refill my hormone medication that i have been on for over a decade because I have low hormones because of under developed ovaries stemming from doing chemotherapy for 7 years starting at the age of 16. After a decade of never needing a prior authorization on my hormone meds all of a sudden as of 3 days ago my insurance starts throwing red flags about approving it. All of a sudden they want to know why. After 10 years and never needing a prior authorization and conveniently 2 days after Roe vs Wade was overturned here we are. I should also mention I work in healthcare and have a background in medical billing so i know how this game is played. 

If suddenly millions of men were forced into getting vasectomies and told they couldnt get access to their favorite little blue pills they would try to burn the country to the ground and try to overthrow the government. Oh wait that already happened. Except they were whining about masks and screaming my body my choice about a shot. Now that its women they think we are over reacting.  We are not. I assure you. I literally just want a say in what I can do with my body. For me having a child could kill me. Ive been told since the day I got diagnosed to avoid getting pregnant because it could kill me. But as of 3 days ago my life is no longer relevant and it doesnt matter if I die as long as we save the precious clump of cells that hasn't formed yet.  Lets not worry if the kid will come out a raging physical mess and trauma later in life dripping in guilt because their mother died in child birth. But all that matters is if we save them right? 

This decision is going to kill lots of women Because here we are back in 1942. Where you have no rights and do as you're told. Well guess what? I've never been a well behaved woman and I don't plan to start now. I literally just wanted a peaceful life. But I have come to learn I am born to lead, I am born to teach and I am here to be a warrior.  Some of the best women in history were not well behaved women and they changed the world. You set a good example ladies. We are here and we are not silent. 

Have you ever looked up a condition from the 18th and 19th century called Female Hysteria? It was an alleged mental health condition that explained away any behaviors or symptoms that made men uncomfortable. Imagine that that this mysterious "illness" was discovered by a man. It was a condition that rarely affected men. Go look up the treatment for it and tell me that men haven't been trying to find ways to shut women up for centuries. Women have been fighting for their rights since the beginning of time. We thought the war was over but its just beginning. Strap on your armor ladies. We have to go to war. 

 

Congratulations, you have Lupus. Now what?

So you have Lupus now what other than strap yourself in to the wild ride you're about to go on unfortunately there isn't much in the way of a how-to guide however after 25 years of living with it I guess that somehow makes me an expert I think the first thing you need is some grit and determination because without those things first you won't make it in life you have to be tougher than the thing that is trying to kill you. Remember to take time to mourn your old life and your old self. There are going to be many days where you feel like people just don't get it and to be honest with you, they don't.  When I first got diagnosed there were zero support groups and I knew no one with lupus. Find your tribe, find people that just get it. It helps more than you know.  trust me,  lupus was the one word none of us ever wanted to hear in life.   Back when I got diagnosed it was pretty much a death sentence I turned 40 this  year and I will be completely honest with you I didn't have any plans because I didn't plan to live this long when I first got diagnosed.  I was told get my Affairs in order because chances are I wasn't even going to make it to 21 let alone 40. So for me it is kind of a novel idea turning the age that you weren't expected to live to. I found a way to celebrate not just my birthday but the day I wasn't supposed to make it to. The one thing you want as a kid or even as an adult is to be around people that are like you.  Growing up at 16 with lupus I knew no one like me. At that time it would be a number of years before I would meet the people who would become my me too group. The people that just got it. When something like Lupus is dumped in your lap you dont even know who you are anymore,let alone who your tribe is. You get there though. I didn't have any plans for 40 other than death. But this has definitely been the year of learning to live, survive and be happy. I brought a house near the beach. Granted I've spent the past month unpacking but it feels like home in every sense of the word. Im happy and at peace for the first time ever and for the first time in my life I'm making plans to live instead of making plans to die. And it feels good to be on the other side. 

I'm still standing

Just like Elton John once sang in the song I'm still  standing "Don't you know I'm still standing better than I ever did. Looking like a true survivor, feeling like a little kid. I'm still standing after all this time." I feel that song in my soul these days. So I guess the question is what happened after the great burnout of 2020 and 2021?  I changed jobs and pretty soon locations. I found something workwise that fits better for me and I'm away from the things that were causing stressors and flaring my disease up. I drive past water, sand and palm trees on my way to work everyday now. There's something that soothes the soul when you hit the beach. I don't know what it is. At some point I found myself happy. Which was a foreign emotion considering it has been almost 7 years of straight stress and chaos. I can only hope that I'm at the end of the stress and chaos and learn to live again. That was my assignment from my therapist that I started seeing after the great crash of 2020. Learn to live again and live in the moment and create new happy memories. All I can say is I m getting there. Its a process becoming one of the living again. Learning to live and be happy and get out of fight or flight is hard. Its going to take work for me to work on that assignment. But I think I'll be ok amidst the sun and sand. Its hard to be sad or stressed with such a beautiful view to drive past every day. The irony of being a lupus vampire allergic to the sun living on the beach has not escaped me. Lots of sun protection for this girl so I can still enjoy that sun and sand. The one consistent in life is that its ever changing. I find myself dreaming out here. Listening to music again and singing again just a little. Maybe this will be a place of healing for me, after a lifetime of feeling broken.  But that's another blog for another day. Maybe one day that book of mine will finally get written. For now its one step at a time, one day at a time. Its a weird thing when you've made it to the other side of chaos.  Its still chaos for the moment as things fall in line but nothing good is ever easy. So here's to new beginnings and healing. 

patient care or money maker?

Essentially when did Healing The Sick turn into a get-rich-quick scheme? Sometimes Healthcare makes you wonder if they see patients as they really are, as people that need medical care for bodies that are failing them, or if they see them as proverbial cash cows for the drug companies and everyone else who stands in line to benefit from sick people. The Hippocratic Oath says Do no harm; however, it does harm. Medical cost are constantly  skyrocketing and people can barely afford the basic things just to take care of themselves medically. If you have any type of chronic illness be prepared to spend money just to stay remotely well,or at least try to.  When did it become less about patient care and more about the bottom line? It really makes you wonder are we in this business to help people or are they in it to make big Pharma rich?  Instead of people being set up and taught how to manage their illnesses and change their lifestyles they will write you a script for pills quicker than you can blink an eye. Here, take this magic pill it will solve all your problems and make your illness better or it won't but either way here is another pill.  It has gone from patient-centered medicine, to greed centered Medicine, where it is all about how much you can bill for. Working in the medical field when you have a chronic illness especially on the insurance side of things makes you feel like you have sold your soul to the devil sometimes. There is a problem with the system when people are dying because insurance companies won't approve medicine that people need to live. Why does a stranger who has never met me nor knows anything about my medical history get to make a decision on what medication could help my condition? Everything comes down to insurance companies. Sometimes what is in the best interest of the patient is on the back burner because the insurance company is the one who has the ultimate say. A lot of times it feels like insurance companies and big pharma are more like used car salesmen than in the business too help people.  People should not be going broke and spending their life savings or most of their monthly income on drugs just to stay alive. After dipping my toes into the water of healthcare I got a quick lesson in how it really was instead of this proverbial Florence Nightingale ideal that I would graduate from school and come into it helping people. Eventually in my career I did get to help people but when you start your career off being the person that calls them for an overdue bill you are not exactly helping people.  Later in my career I would get to directly help people but it would come at a price. But that's another blog for another day. Have you ever looked into the process of who is on the medical boards for insurance companies who decide about your medical needs? If you want a good read, go down that rabbit hole. It will blow your mind. I have a friend who has a son who was on 2 types of ADD medication. Both were name brand and both were the only two out of the many they had tried that actually worked correctly. It required her to go all Mama Bear on the insurance company just so her kiddo could get the medication combination he needed that worked for him. Until the curtain is pulled and people have an honest conversation about how truely broken the health care system is we are stuck in the hampster wheel of broken healthcare.