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.