Back in the Saddle again

Well here we are again. I don't think you're ever prepared when your life blows up and at this point I've lost count of how many times it has. In many aspects of my life it has been like someone Lit a Match and then poured the gasoline on the bridge set fire to it and then blew it up with a bomb. That's how life feels these days. You feel numb and tired and alone. Lately the lupus has been acting up again. If we have to pinpoint they are pretty certain it is a direct effect of all the stress that I have had in my life for a minute now. No surprise to me. The dragon hates any form of stress and will rear its head at the first sign of it. Doctors have now suggested a second therapy along with my current one which is CellCept. We are going to be trying benlysta on for size. I'm not crazy about going back to monthly infusions. It brings me back to the beginning and kind of retriggers that PTSD of being 16 and sitting in a hospital bed for the next 7 years doing chemotherapy in hopes that my kidneys wouldn't fail . But I look at it this way in the very little free time that I do have these days because I'm currently working two jobs seven days a week, an extra 3 hours a month just sitting there relaxing while the infusion does its thing will do me some good. I talked to a friend of mine tonight one of the very few people I actually told what was going on. They suggested that I try something new at my infusions that way I can turn a negative into a positive. My best friend got me some crochet needles and yarn for my birthday and I have yet to start a project or finish learning the different stitches so I think it's a good place to start so that will be my plan once I start my infusions get my little relaxing bag together. Fill it with crochet needles and yarn coloring book and markers and my latest book and make the best out of it and cross my fingers and hope for the best that the magic poison does its job. I don't care how many masks we put on or how many times we do this in our times with lupus it never gets easier. But you can't stay in the depressive place it will do nothing but bring you down. So yeah you turn a negative into a positive and you keep swimming. So for the next two years of my life I'm going to learn how to crochet, color my little heart out and heal my inner child read my books to catch up on my massive book collection, stare at the palm trees out of the window and pretend I am on some Island drinking a mai tai or something. And when I'm not doing that I will get back to kicking ass and taking names. I'm in the gym 5 days a week these days and I can't sit here and tell you how good it's been for my mental health. Because this disease will absolutely beat you to your knees. For me the gym has become this way of taking my power back and reclaiming my body. With this disease you will sometimes feel like a stranger in your own skin. You'll feel stuck in a body that doesn't even feel like yours. But somehow you find a way to take your power back. U keep swimming, because you have to. Because you owe it to yourself even if it's for 1 minute to prove this disease wrong. It's never going to be easy I'm not going to sit here and lie to you like that. But you make the best of it and you keep swimming because that's all you can do. You take a deep breath and you walk through the door.  So here I go again taking that breath and walking through the door in hopes of looking toward that positive. Because at the end of the day you need that light to balance out all the darkness that this disease will bring.  You find your light and you cling to it as hard as you can because you will absolutely need it on the rough days. You find your light and you become the light and you don't let anything burn it out. 

Where is the CARE in Healthcare?

So Yesterday unless you've been living under a rock you noticed that the CEO of United Healthcare was shot and killed. I think something everyone also noticed was the total lack of sympathy and empathy for this individual. I think the obvious thing is that no one really Mourns the Wicked. In 2024 United Healthcare had the highest denial rate. How many people died because of that insurance companies denials? It is sad when the main goal is not to make people better but when the goal is profits over patient care. The priorities in this country unfortunately are wealth and not health. It is about making money on the backs of sick people who rely on this Twisted hamster wheel just to survive and try to live a decent life with health conditions. Which they make almost impossible as they deny care, require prior authorizations and put people into crippling medical debt just to try to get the bare minimum when it comes to their health care. Medicine has become a business. Insurance companies have made no secret about the fact that all they care about is profit. You see no philanthropy efforts, no health fairs, no nothing as far as good work in trying to better the health of the people who are paying for their insurance. It is not a lack of empathy that is affecting people. It is the fact that insurance companies and big Pharma make it blatantly known that their patients' lives don't matter. Essentially telling the patients let them eat cake.  There is no CARE in healthcare anymore. The insurance companies don't care if someone lives or dies. They just care about their profit margins and bottom lines. But the bottom line for sick people is they are tired of the entire system having a complete and total disregard for their health condition and their life. People deserve Medical Care. They also deserve Medical Care that they don't have to fight like crazy and almost die just to get things paid for insurance that they pay astronomical numbers for. So if CEOs and general consensus want to know why the general public lacks sympathy and empathy for this individual dying is because the insurance companies had no sympathy and empathy when it came to denying their loved ones procedures. The attitude of the insurance company should be approve and improve instead of deny until they die.

dear younger me,

Dear younger me, 

Remember how you always thought that life was always going to suck and your dreams were never going to come true. Well I'm here to tell you. It takes you longer than you ever think it will and you will get so frustrated with how long it takes and how much grinding and busting your ass you have to do to get there. You will go through some of the worst things in your life you've ever been through and there will be many times that you're not even sure you will make it to the other side or that you even want to. You'll find out family is something that you make on your own not necessarily something you're born into. Feeling like you have family doesn't happen until later in life. You'll wind up cutting off an entire side of your family. Keep your head up and look forward. Don't look in the rear view. There's nothing there for you anymore. It's going to get rough. Long stretches of hard times. During that time just remember you're not alone not nearly as alone as you think you are. People do care. And don't give your heart and soul to a job it will destroy you or a family out to do the same.  You will make it to the other side through that even though you don't think you will. But you wind up living in the place that you always used to run to when life got tough. It was always hard to be sad when you were near the sand the sun and the water and that great little Beach town. It's where you will find your spirit again. In more ways than one. It will be the place that brings you back to life.  You'll still hate health care that won't change. You do find some good people along the way who make it tolerable. Eventually you make a few friends who just get it.  You end up buying your dream house and meeting your soulmate. It's every bit the fairy tale that they talk about in books and movies. And it's completely worth it. So keep your head up as you go through dating thinking that you'll never find the one. Because you do just takes you a little longer to come together. And that one that you always thought you would end up with. He was never The Shining Star that you thought he was. You were. He was just too blind to see it for a very long time. You'll have a surgery that terrified you,  learn to walk again. But for the first time in almost your entire life remember what it's like to walk without pain. You'll be able to climb stairs and still Marvel at it like you are climbing Mount Everest. You'll come to find that peace that you always search for in sunrises and sunsets and coffee in the early morning and growing herbs and plants and sunflowers. Learning to live again will be challenging. It takes a lot of stepping out of the darkness and into the light. Something you're not at all familiar with. But just trust me and go with it. It feels very foreign to you. But once you find that light you never want to let it go. You have to remind yourself probably a hundred times that you deserve to be happy. And you do. You just didn't think you deserved it because of all the horrible stuff you went through in life. You never had time to live or find happiness. You were too busy just trying not to die or drown as life tried to take you under. But you get there my girl. Just takes way longer than you ever think it will. And at some point you realize you made it. Came out of the darkness and found the light and somehow found your happily ever after in the process. 

Do No Harm 2nd. Cover your ass first.

First, do no harm. One of the famous lines in the Hippocratic oath. However in today's society especially in healthcare the motto is cover your ass first, Do no harm second. When did patient care take a back seat to, well almost everything when it comes to healthcare? Lets be real here for a second. Its the unspoken truth that no one wants to acknowledge that profits come way before patients. Its the giant elephant in the room that everyone in healthcare doesnt want to acknowledge is real, but it is. And those of us that straddle the fence between patient and advocate and healthcare worker see more than people realize. Some Doctors, definitely not all,  are actually in it to give the best care possible. Those are rare.  Ive met a few good ones in my healthcare journey. But there seem to be more bad than good doctors at times. Those are the cover your ass first, do no harm second types. Avoid those at all costs. Just like a bad date when you feel things go south with your provider start looking. Be your own advocate. Its better to get out sooner than later. Ive had my instances where I stayed on as a patient out of loyalty to a doctor that i should have walked away from long before I did. But back to the elephant in the room. I was recently scheduled for a procedure that I needed to do. Thanks to me winning the genetic Lottery with crappy health conditions. What seems like it should be something so simple turns into a three-ring circus so quickly. Because after your doctor orders the test. Then you have to convince the insurance company that you actually need it and convince them to pay for it. Which sometimes just convincing an insurance company that a test is necessary is like banging your head against a brick wall. They care about their money much more than they do about your health or anything that you need. Essentially the Daddy Warbucks of healthcare. Sitting atop their big pile of money not really caring about the consequences that affect patient's lives on the daily. So then you finally get scheduled after jumping through the 10,000 Hoops that the insurance company requires and Straight Out The Gate the hospital that you will be holding the procedure at send you an estimate for an ungodly amount. Where they expect their money up front. Essentially pay up or go kick rocks.  We all know times are tight right now. I love how hospitals think we just have thousands of dollars just laying in the bank to give to them for necessary tests that we need for diseases we did not ask for.   At the root of it all the problem is greed and money.  No one is held accountable in this pyramid scheme of healthcare. The one thing that has absolutely graded on my nerves since day one and it is the one thing that we have had nailed in our brain as healthcare workers is that patients are considered customers not patients. Where is the humanity in healthcare? Why are we so concerned with profits and not more concerned about the reason this whole institution was started in the first place, to help people. Without patients you have nothing. Healthy people don't make Healthcare money.  People should not have to render themselves bankrupt just to afford to attempt to be their healthiest version of themselves. Until we pull the Veil on this whole smoke and mirrors routine that is the business of healthcare unfortunately nothing will change. Insurance companies need to be held accountable for outrageous pricing and hospitals need to keep it reasonable. But trying to make people take accountability in healthcare is a battle that won't be won anytime soon.  The motto of healthcare should not be Do no harm. The Motto should be accountability we have none. Morals nonexistent. Profits? Our number one priority.

code blue

When you're in healthcare especially working in a hospital you'll hear the term code blue thrown around a lot. A code blue is generally called when someone has having trouble breathing or is having some type of medical emergency. Funny Because that's how I felt my entire career in health care. Always feeling like I couldn't breathe, like I was being suffocated by the madness and the chaos that surrounded me.  All I ever wanted was peace and the longer I was in that environment the less I felt like I could breathe. There were days where I felt like the wind in my lungs was going to get cut off. Between the never-ending to-do list and the constantly having to put out fires day after day. Everyone acting like everything around me was a level 10 emergency. Meanwhile I'm just trying to hang on and not lose my mind in a system that pretends to care about patients and makes no secrets about the fact that they don't care about their own.  Even though oddly enough I grew up in a hospital more or less somehow working in one I always felt like I was the outsider like I didn't belong in an environment which I was very much familiar with and had felt like home once upon a time. Some days it felt like a prison. Most days I felt dead inside and exhausted. Wearing that mask of happiness that I loved healthcare and was happy to be there. I could do the small talk and just all around appear like i loved being there. It was the complete opposite. I was miserable there and spent most days dreaming of the life I couldnt have because a disease robbed me of it.   I wanted to live my life and have a job I enjoyed. Not this eternal rat race where you feel like you are runniing on a hampster wheel and no matter how hard you run its never good enough. Thats how its always felt in healthcare. Hearing good job was a rarity or it was rewarded with pizza. Side note: healthcare please find another way to show your appreciation to your staff other than pizza.  We like money a lot more than we like pizza. No one talks about what happens when the helpers burn out. You hear words like compassion fatigue and burnout. Of course it's all you do is hear about it. No one really wants to address how many people in healthcare suffer from both compassion fatigue and burnout. How do you know when it's time to exit stage left and take that final bow? Maybe whenever I get out of fight or flight mode for the 500th time I can focus on finding something that makes me truly happy. Once upon a time I thought that was Healthcare. These days I don't know what my career looks like in the future but I don't know if it includes Healthcare. Maybe if it ever becomes less about money and more about actual caring about patients then I will reconsider. I might as well pick out the color of my unicorn instead of thinking that the ladder will be a reality. Maybe it will be a blue unicorn. Maybe one day I can find my way out of this Code blue and learn to Breathe Again. 

what exactly is it that you do?

What is it exactly that you do? A question I was once asked by a previous employer.  One who had no clue I was part of the glue holding it together.I ran down my professional skills which all seem boring to me and apparently to them too. Minus a few cool things I got to do in my career. What is it exactly that I do? Survive. I have a PHD in that. Ive done it well for decades. Survive my fathers raging alcohaulism when i was a young child. Driving my first car at the age of 4. Then after that surviving his unmedicated schizophrenia where talking to trees and plotting his families murder was a common thing in our house. Conversations about how he was either going to shoot us all and how or burn out house down with us in it were things we heard every day. There were many days spent surviving, until my family and I were able to break free and start new lives. Of course before the schizophrenia of my father came my diagnosis with lupus. Immediately into that diagnosis in was fighting for my life while my kidneys were failing. Trying anything that would work just to get it to calm down. Again surviving. Once Pandora was back in her box (Lupus) within a year of that i was diagnosed with a rare bone disease which would require multiple surgeries, massive amounts of pain and finding someone who not only knew about the rare disease but could make me walk again when the bone disease crippled me not once but twice.  Again surviving. It took lots of searching and finding the very best surgeon I could to give me the ability to walk again with a hip replacement.  When surviving is the only thing you know how to do you wear it like a crown. However the downside of the survival crown is people tend to either look at you with pity or they think you are weak. But you know if they were given 24 hours to walk in your shoes they wouldn't even survive it. We've all heard the phrase don't judge until you have walked a mile in someone else's shoes. Its true. However most people at least those who haven't experienced more than their fair share in life tend to do the opposite and judge immediately. Those people could learn a lesson in compassion. Survival is hard I don't care what anyone says. Going through things in life where no one has any clue What you've been through is rough. You know you have reached the Pinnacle of survival when you go to therapy and even your therapist is amazed how well adjusted you are and that you aren't in some sort of padded cell losing your mind from all the trauma you have been through. And when they ask you how you made it to the other side you tell them about how determined you are to have a happy and peaceful life and that was the driving force that got you through. Being a Survivor doesn't come with a road map. But it sure comes with one hell of a story. 

Are you done being sick yet?

I hope you feel better soon! A phrase where people mean well. However to those of us in the chronic illness community that phrase has a different meaning. How most of us want to respond is thanks I probably won't! I think some people in life forget what the word chronic means. Normies get tired of us constantly being sick or having to take off time to rest or for doctor's appointments or just trying to keep up in a world where you have to function on a normie's level all the while being a person with a chronic illness where it is a struggle some days just to get through the day. If they are tired of hearing about it we are tired of living it. But unlike them we don't get to crawl into our hole of normal and just go on with life.  Being someone who has a chronic illness but who also works in healthcare it's almost like riding both sides of the fence. And believe me there are internal conflicts between the patient in me and working in healthcare. 

You see things from a different angle when you both have to live in that world and work in that world. I think it's a double-edged sword for us. We want to make a difference and pay it forward to an entity that once helped us. But at the same time you see the flaws in the system more.  For me having one foot in both worlds is exciting but exhausting at the same time. It's all I've ever known.  However at some point you grow tired of having one foot in both worlds and you just want to live in one or the other. 

Normies don't get it. They never will. It's a club if they are lucky they will never get to join. Their version of being tired and Ours are two totally different things. They can never understand the trauma of living a life full of doctors and medication and tests for your entire life. Of being gas lit and going from Doctor to doctor just trying to get a straight answer on why you are sick. But you don't get answers you just get more pills and try to lose weight. 

So now try being someone in the chronic illness Club and working for the entity that is supposed to help those who are sick. I think to be in the chronic illness Club you have to be a little twisted. Because of the life you have lived you see everything. You see people going home beating the thing that was supposed to kill them, people still struggling to get answers and people who lost their battle with the thing that was trying to kill them. But the thing you become is a voice for the people you identify with. The reason you are there. Your fellow members of the chronic illness Club.  When you have a foot in both worlds it's almost like a love hate relationship. You love working with others like you, however the sheer bureaucracy and frustration of dealing with entities that see patients as no more than dollar signs will be enough to drive you mad. Do you chase your dreams and leave behind the only world you've ever known?  The world that makes sense to you but at the same time makes no sense at all. So you search for meaning. In work, in life, on living with this broken body your cant escape. Just a spoonie girl living in a normie world. No one said it would be easy. 

You find yourself dreaming about a life without one or the other. What life would be like if you weren't sick or what life would be like if you were physically able to choose a different profession. Like that thing you always had a passion for. That thing that everyone says if you do the thing you love you don't work a day in your life. That thing the thing that sets your soul on fire. You find yourself envying the normies the ones who don't really have a clue what it's like to live in a broken body.  Its not that we hate them. What we feel is envy for something we will never have again, sadness for the life we never got to experience and a little bit of anger to the normies that waste their life killing themselves with their Vice of choice. And we feel like they should be grateful that they aren't a member of the chronic illness Club. 

Happiness dont come cheap

Being strong isn't always a badge of honor. My whole life I've been told youre the strongest person I know. Like I had any choice in being strong? It was be strong or fall apart. Be strong or succumb to the dark side. There was no be strong and happy. Its hard learning to be happy when all you've ever known is "being strong". I never had time to just be and be happy because I spent decades in fight or flight. Decades of CPTSD from one traumatic thing behind another happening back to back. Like a freight train with zero signs of stopping.  I would say only within the last year had I been able to just be and be happy. And let me tell you after decades of chaos and trauma peace and happiness is something you have to make a conscious effort to do. It doesnt come easy. Retraining your brain is hard to see the happy things instead of thinking about all the bad things that could possibly go wrong. I recently had a hip replacement. Not only was it scary it was the roller coaster of emotions. Nurses and physical therapists encouraging me to walk and i did. That first step was terrifying. And again everyone cheering you on from the side lines. Maybe its me and therapy is calling my name again to get myself right. This hip replacement definitely flared up some PTSD memories of past medical trauma.  But I feel like I shouldnt get the cheers until I reach the top of the mountain. Theres victory at the top right? But as the great Ralph Waldo Emerson once said "Life is a journey, not a destination." Sometimes the journey to the destination feels like a road full of pot holes and with you wondering if you'll ever make it. Sometimes its hard to see in that moment, but you do. Kinda like right now for me. Its almost been 2 weeks since surgery. I can walk and even better walk with no pain. Im grateful for that fact alone. But right behind it came massive swelling of my leg and checks for blood clots. The swelling went down and no blood clots were found. Now the healing begins.  One foot in front of the other, literally. Learning to walk again. I just started walking with a cane. Very wobbly mind you but with a cane. I try to stay focused on the future and what life will be like once I get to the other side of this and I can walk again normally and no pain. Which for me is a wild concept because I haven't walked without pain since I was 15 or 16 years old. It's so weird the no pain thing. One day was like someone threw the switch. I sit here and think I have spent more than half my life walking around in excruciating pain instead of living my life. I always tried my best to live my life but it was always a you play you pay type situation. For every fun thing I ever wanted to do there was pain and rest involved just to feel so my normal again. I still don't know what it's going to look like when I get to the other side of this. But I hope it's being able to walk normal with no limp and no pain and just enjoying the simple things like walks with my partner or walks on the beach. So we will see what the future holds in this Uncharted Territory of this new pain-free life. 

Rotting from the inside out

The only place some of us can feel normal and not in pain is in our dreams. It's a sad reality but a reality for a lot of us that feel like virtual prisoners in bodies that are horribly broken and doctors who do very little to help. I recently got a second diagnosis that my bone disease had spread further. It had spread to my ankle and my Talus is in collapse. I can't put any weight on my foot. Don't forget can't put any weight on my hip because I am in stage 4 collapsed and my hip is collapsing. I feel like my body is an old house that is falling apart and the house is on fire. Different areas of the house are on fire at the same time so you really don't know which way to run to avoid the fire or what is the safest path to get you out alive.  It's hard when you feel like a prisoner in your own body. No one knows what to tell you when you tell them that you have a degenerative bone disease that is basically eating you alive from the inside out. You hear a lot of wow I'm sorry!  gee that sucks.  I mean what can people really say when you are wasting away before their eyes. You become a spectator of life. Watching from the sidelines. Everyone experiencing the things that you've only dreamed about because you can't move and every step is agony. And then there is the frustrating task of trying to get relief from the pain that haunts you and keeps you awake morning noon and night. Doctors won't hesitate to prescribe you medicine that might kill you or leave you with side effects that will cause a lovely slew of other problems. But give you something that might actually improve your quality of life? No sorry out of the question. You might become addicted even though you are in chronic pain and what you currently take doesn't even remotely touch your pain. Oh by the way have you tried ibuprofen? But don't take too much because that has its own set of side effects that will also ruin your life. It is an endless frustrating Circle that leaves you asking the question to those that are supposed to improve your quality of life then what do you expect me to do?  All you ever hear about are the people addicted to the opioids and the pain meds. And I'm not downplaying any of that however there is another side to the opioid epidemic that no one talks about. What about the chronic pain patients? The people who legitimately need pain medication to just get out of bed in the morning and be able to function and do the bare minimum. What about them? Virtual prisoners in their own body. Reliant on a system and constantly living in fear that you won't get your medication that you need to function and live your life. I will use myself as an example I literally have two collapsing joints as we speak. What I take currently is the equivalent of taking a placebo that does absolutely nothing. First I get told to take Ibuprofen then I get told don't take too much ibuprofen. So what is the solution? Why are we as chronic pain patients constantly dismissed and told our pain is not that bad. Pain is a subjective thing. Meaning you cannot see it. And for medical community who has based their entire existence on the things you can see, I think how they operate when it comes to controlling someone's pain is something they are still seriously lacking in. Because I can honestly tell you from personal  experience I can stand in front of you being an excruciating pain and I am an expert at wearing the mask of I am fine and I can stand there and pretend like I am not in pain and normal. Masking at its best from Decades of telling people I was fine. When in reality I was the opposite of fine. I didn't learn how to advocate for myself or give my opinion on my own Healthcare till later than I should have. In the early years it was do whatever you have to do to save my life. These days I want a say in what happens to my body and you can damn well bet I'm going to have an opinion about the treatment plan. When I started this journey with the new ankle addition to the bones disease, the first person that treated me said something that I hadn't heard in quite a long time in healthcare. That you treat the whole person not just one part. That is what is missing today. Treating the whole person and also not treating them like a cash cow. Until Healthcare can relearn how to spend time with patients and get to the root of the problem. Instead of ushering them in and out of a turnstile to see how many people you can see in one day to make as much money as possible. Only then can we get back to treating the person as a whole person and not as a giant dollar sign. Chronic pain patients need to be heard and we need to be treated as people and not have our pain dismissed by people who do not live in our body. Who make decisions about you based on a 15-minute visit where they see you every 6 months. We deserve to be treated as human beings who happen to have bodies that are failing us and working against us.  Not like hampsters trapped in a game of healthcare monopoly. 

RIP to who I used to be

This month will make 25 years since I was diagnosed with lupus. Also in that time frame came diagnosises of Avascular Necrosis, Fibromyalgia, Raynauds, and a slew of other fun diagnosis in the process. I'd like to sit here and tell u after 25 years you get over all the medical trauma that you went through and u embrace the new you you've become. But that's not how it goes for everyone. Thats not how it went for me. There's still things from the early days that Im traumatized by.  I was still a kid when this started. A kid making adult decisions about a disease I know nothing about, and at that time neither did the doctors.  Decisions that would have life long impacts and later being told well we did what we had to do at the time to save your life.  Getting diagnosed with a chronic illness changes the whole tradjectory of your life. I still mourn the me that never was. The person I could have been before my life changed forever. I always wonder what great things she would have done in a body where she was free to take on the world.  One of these days i will share my diagnosis story. Thats a story ill share with time. I don't really remember being pain free or life before lupus. Life is in flashes from that time period. They say that happens with trauma.  Its faint memories since I got sick so young. For others, they got sick later in life and remember life before an illness completely sidelined their life. I don't think its something you ever get over. I think you just get used to living in a body that runs like a bad car. One that's been in multiple car wrecks and is running on fumes and a prayer.  After so many years I feel like i should be an expert.  I still dont have all the answers. I wish I did. There's no guidebook to chronic illness how to deal with it or how to live with it.  Every day its get up, put one foot in front of the other and keep swimming. You either keep swimming or you drown.  Recently had someone ask me how do you do this every day? Meaning function with my conditions. To be honest with you I kind of looked at her like she was crazy. I just responded with honesty and told her I had no other choice. I did whatever I had to do to make it in life. I recently got dealt more bad news as far as my health goes I am not ready to share it publicly yet but it's definitely another blow. I look at it this way you have two choices in life give up or give it all you've got. At some point in my life I've wanted to do both. There were many times I had no idea how I was even going to put one foot in front of the other and get through the next moment let alone the next day. When you're chronically ill a phrase you hear a lot is you are such an inspiration. I promise you when we became sick being inspiring was not something we all initially wanted to be. I remember just wanting to be normal. Not inspiring just  normal. Go on my senior trip, go away to college and just live a normal life like everyone else. But I didn't get the normal life and that's okay. Because if somewhere along the way I can be inspiring and be someone else's guidebook to chronic illness then I've done my job. Good, bad or otherwise you play the hand you were dealt. There is no magic guide book. All you can do is just keep swimming. 

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......