Out of Sight Out of Mind

I was recently asked to speak at a function about the anniversary of the ADA and why it is so important for people with disabilities. I had to turn it down for multiple reasons. #1 the surgery. #2 I dont think my style is what they are ready for. I tend to come out with guns blazing and pulling no punches and telling it like it is. Like that line from a few good men where Jack Nicholson is screaming you can't handle the truth. Yea...thats me. I tend to ruffle feathers. Not give the warm and fuzzies people like.  I've never been a well behaved woman who kept her mouth shut and don't plan on starting now. So yea. Why is the ADA important?  So people with disabilities are given equal opportunities to our healthy counterparts.  July 26, 1990 the day the Americans with Disabilities act was signed into law. Up until that point people with disabilities were considered second class citizens. A group within society that was once institutionalized just because they had a physical or mental disability that they had no control over. Getting a disability is like a roll of the dice. It can happen at any time to anyone.  Disability doesn't discriminate in who it affects. People with disabilities wanted more than to be locked away from society and forgotten and Out of sight, Out of mind. They wanted to be seen as more than their disabilities. Seen as people with dreams to be produtive members of society and treated with respect.  But from the outside for centuries people have viewed those with illnesses as pariahs. But we are so much more than what society has and still does think of us. Some of the most amazing people I know are the ones who have had horrible physical roadblocks thrown in their path. The ADA has helped people with disabilities a lot. But there's still a lot that needs to be done to help people with disabilities live their best lives possible.  We are a long way from claiming victory at the top of the mountain. When employers finally treat employees with illnesses as an asset instead of an inconvenience then we will have victories. When we have more accecessability options for people with all disabilities. More wheelchair friendly access to things,  more options and accommodations for everyone who just need a litte extra help in life to participate in life because they weren't delt a fair hand.  

But have you tried ibuprofen?

Greetings ladies and germs so much for being a consistent blogger!  Sometimes life happens what can I say? I took a break from blogging to focus on my health. Sometimes it just starts to backslide and you have to step it up in the game of my body is a raging shit show. But what else is new right?  So my life became a revolving door of doctors. More like interviews since you never know how in the world that will go. Will they be an asset? Will they try to kill you with their nonsense, or just flat out think you are crazy? Its always a roll of the dice. So after feeling like i saw every specialist this side of the Mississippi I finally found a team that works. It took lots of google skills and persistence to find people that fit my needs but i found them.  Then it became a matter of  addressing the things I had ignored for decades because I was in survival mode and there was no time to take care of myself. Just keep swimming and try not to drown. Since this time last year my hip has since collapsed and in a few short weeks I will become the bionic woman with a new hip. Never thought I'd become a real life terminator but here we are. It became harder and harder to mask the pain and pretend I was fine when internally my bones were screaming at me because they were rotting from the inside. I have lost count of how many times I've pretended to be fine to outsiders but internally I felt like I would collapse and my bones would snap right there from the pain.  Yay for Avascular Necrosis, fun times from steroids. I eventually gave in and started using a cane and put my pride on a shelf about using one.  First I bought a leopard print cane, then a shiny purple and gold one. If I absolutely had to use a medical aid it was going to be cute damn it. Now if only someone would improve the look of hospital gowns. Any fashion design companies wanna look into that one? Walking around without your ass hanging out would be nice. Depending on who you ask. So I got a cane, a new team and am playing the waiting game until I get my new hip. But a date is set and the count down is on. Its been amazing to me what ive heard in the past year from doctors as far as medical advice that was supposed to pass as helpful. I heard the usual. Have you tried exercising? Why yes i have but it renders me unable to walk at all for 2 whole days. Have u tried losing weight? See response above and also I eat pretty healthy. Just cant move because my hip is in constant pain. Then my favorite. Have you tried ibuprofen? The over the counter band aid for everything. Its the medicine version of have you tried turning it off and then back on again? Sometimes it works sometimes it doesn't. Kinda like the rest of my body. I'd be lying to myself if I didnt admit how bad the pain is some days. Most of the time in a medical setting your pain is measured using a smiley to sad face graph. Which for someone in chronic pain is a frustrating scale. Explaining to medical staff that well my baseline pain is a 7, flare day pain is an 8 and doing any activity past my usual is an automatic 9. Wanna see their head spin around like the exorcist? That's the way to do it. But these days the pain dictates my life and what I can and cant do. I will stay off my soapbox about the headache and taboo that comes with asking any provider for pain relief. It is generally met with hesitance, a speech about addiction and have u tried ibuprofen? Oh and yoga.  I think I speak for a lot of us in chronic pain when I say. We are looking for general relief from pain that is with us morning, noon and night. A constant reminder of bodies that are pushed past their limit and most of the time the limit being the absolute bare minimum before the pain renders you immobile. To say I am beyond ready for replacement surgery is an understatement. Im sure that in itself will present a bunch of new challenges.  But you gotta do what you gotta do to make it to the other side. I look forward to the simple things after replacement. Walks with my partner being number one.  Right now every step takes everything I have and is met with waves of pain as I wait for my surgery date. But hopefully brighter days are ahead and many beach walks with my partner are in my future. And just like Nemo we just keep swimming. 

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.  

The unarmed battle

2020 was an interesting year. Turns out plagues and pandemics are not as fun as they look in history books. Its even less fun when u work in the medical field and are immunocomprimised. So yea, on our last episode of my life is a shit show I had just gotten news my lupus was active again. Here we are 7 months later and its still active and after raising my immunosuppresents 4 times its still raging like a forest fire. Still living like the virtual girl in a bubble most of the time. But hermit life isnt so bad. More time for gaming.  Thank God for Animal Crossing. That game saved my sanity in 2020.  But for me the pandemic and working the front lines put a lot of things on perspective for me.  One thing was that I really needed to focus on my dreams and start making them a reality.  Go back to school (again) to finally get where I wanna be professionally, start my own jewelry bussiness and eventually own my own food truck.  I spent decades ignoring my dreams and just treading water in survival mode. Not a fun place to be. Its hard to achieve your dreams when you are trying not to die. Unfortunately in the world of chronic illness there is no Survival Guide on how to thrive in your career, try to keep your disease on track, attempt to have a social life, personal life, family time whatever while trying to keep your stress level low at the same time. Its exhausting. I dont know about u but I am absolutely horrible at self care. I had to learn to force myself to rest and pamper myself sometimes. Facemasks are my favorite way to pamper myself. What are your ways of pampering yourself? My problem is half the time I think I can do it all. I still have that healthy person mentality, even after 23 years. Not that I forget I'm sick. Lupus never lets you forget but i push myself till I absolutely crash. Half the time these days I ask myself am I insane?!!  still working a 40 hour a week job attempting to have some semblance of a social life since I have been a Hermit for a year recently, trying to get everything lined up so I can go back to school. To obtain a career that will be easier for me when my health Bites the Dust. I am not foolish enough to think that I can keep going at the pace I'm going at. It's kind of like when you see a car crash coming, and all you can do is brace for the impact that's pretty much where I am now. The lupus is Raging.it is a daily battle to get enough sleep, get through 8 hours of work and try to clean my place and cook myself something healthy.  I need some lupus life hacks LOL.  If you got any please send them my way. I always feel like there aren't enough hours in the day to do everything I need to get done. So for now just keep swimming as always!! I am going to try to be a better blogger and not make it a whole year before I write again. 

its ok to be not ok

So today is World Mental Health Day and lets be real our mental health has definitely been tested this year with everything that has gone on in 2020. Covid, Elections, quarentine, working the front lines, hurricanes u almost dread watching the news wondering whats next? Then add lupus flares on top of all that and its like the downhill slope of the roller coaster. Hang on for dear life and weeeeeeeeeeee!! Here we go!! So in the last episode of 2020 is a shit show my lupus was active again for the first time in 20 years. To be honest Im not surprised given the amout of stress I was under.  I had to learn how to manage my stress and quickly. 3 things here lately have made me very Zen. Ok sometimes Zen. Lol Meditation,  netflix and lots of animal crossing were my saving grace. Im still a work in progress so learning to not let things stress me out has been a process.  But somehow I came out the other side. I sat in my doctors office in shock as they told me my labs were back to normal and the bump in immunosuppresants did the trick. Just like that. Boom. The seas are calm again for now. Now to readjust and try to remember what normal is like. Or is there such a thing? In the words of Charles Adams "Normal is an illusion. What is normal for the spider is chaos to the fly." Just keep swimming kids. The light at the end of this shit show tunnel is getting closer. Just keep swimming guys. 

A dragon named Lupus

You know those moments in the movies where everything slows down and people start walking and talking in slow motion and the character thinks they are in some kind of dream or nightmare and then they wake up? Yea sometimes you almost wish it were a movie and you would wake up because the words you are hearing are your worst fear and nightmares coming to life. Yesterday I heard the words I never wanted to hear, your lupus is active again and your kidneys are showing a decrease in production. Boom.  Welcome to lupus. Life is going along and then there you go hitting minefields again. Rule #1 with lupus. Never get cocky thinking you are doing well and feeling invincible like superman. I did that. For quite a number of years. I guess it happens sometimes after you've been in remission for more than a decade. That feeling of being untouchable. Maybe that's where my daredevil streak comes from or maybe its that Ive been so close to the edge fighting for my life that nothing scares me anymore, except this. I swore I was going to be honest and transparent so I guess here we are. At this point its crank up the fire to see if we can extinguish the flames of lupus before it spreads like wildfire. All of us with lupus know how that goes.  I have sat here and played the what if game. What if I would have taken it easier on myself and actually rested like I should have? Would it have made a difference? Would I still be in remission sailing along living my life?  working and living and loving life ignoring the fact that at the end of the day the dragon called lupus was still there.  After 20 years the dragon has awoken. Ive never been able to figure out why before every major flare up I feel amazing? A month ago I was hiking in The mountains. After that working out at the gym. All while balancing work, family social life and all those other balls we seem to juggle. Physically feeling great. Ignoring those days when my body needed a break just so I could push myself a little more. Trying to pass as normal is addicting.  That feeling of physically feeling normal is addicting. When you've been stamped with lupus more than half your life you are elated when u are treated like everyone else or u get that small taste of what it means to "almost" be normal. Im not sure where this roller coaster will go. I wish I did. Will I come out of this feeling like I just went 10 rounds in the ring and got my ass kicked or that I survived yet again. I guess time will tell. So for now we wait. To see if the meds work, if my kidneys heal or if I can actually learn how to rest. Its a marathon, not a sprint especially when u are battling lupus. Guess its time to strap on my battle gear, straighten my crown and fix my superwoman cape cuz the road just got a little bumpy......