badass table of one.....

Hey all you cool cats and kittens. Hey, Don't judge. I needed something to watch to distract from the universe being on fire more or less. Hopefully you all are surviving during these crazy times. I am immunocompromised and work in a hospital so to say it was balls to the wall crazy and stressful was an understatement.  Basically it became strap on your mask if u could find one and hit the ground running every day.  Being immunocompromised and working around covid every day was hella stressful. Id be lying if I didn't think of my own mortality during this mess. Along with no immune system my lungs aren't the greatest either. Every day I went to work wondering if that was the day I would catch it . In the world of lupus that kind of stress and running yourself ragged will bring on a flare and so it did. Yea good times! 🙄  I had a friend not that long ago say "ok you can stop trying to prove to the world that u are a bad-ass. We get it. We know u are." I was never trying to prove anything. I know I'm a bad ass. But in the face of what was going on there comes a point where u aren't afraid anymore. Like that moment in home alone where Kevin mccallister says hey I'm not afraid anymore! Just like that. Poof. You learn to just do it. You become the force. You realize u are made of steel. They say all u need in life is two seconds of blind courage and they are right.  Tommorow is world lupus day. For all of us every day before our feet hit the ground it takes those two seconds of courage and to say u can do it to get yourself moving. Then we face the day and whatever life and lupus throws our way. I'm not saying it will be easy. It never is. But I think only the toughest people are given these types of challenges. As always just keep swimming. And tommorow on world lupus day take a moment to celebrate what a bad ass u are. Straighten that crown and realize u are kicking lupus ass every day through the good days and bad. Your success rate for surviving is 100%. So tommorow lupus babes celebrate survival. I couldn't be prouder to be in the trenches with a more amazing group of warriors. You guys make me smile and inspire me daily.  I raise a glass to u guys, to us and to the bad ass women we are. We are wolves and butterflies, Tough as nails and just as beautiful. Keep smiling, keep surviving and keep kicking lupus ass! 

But you don't look sick!

But you don't look sick! The phrase those of us in the chronic illness community have heard a thousand times and absolutely want to scream every time we hear it. I know my response always wants to be will please tell me what does sick look like So I can let my body know!  I'd be lying if I said it wasn't still a struggle every day in my day-to-day interactions with people. you would think in this day and age with as many people that have invisible illnesses the judgement wouldn't be there but it definitely still is. For us we know what sick looks like, it's US. We are the ones that look normal but internally our bodies are waging war on us. The other thing we recognize is that look of utter exhaustion. The one that makes you feel like you have cement shoes on with every step you take. The I have slept for 15 hours but my body feels like it has slept for 1 kind of fatigue. The kind of fatigue that when normal people say they are tired you roll your eyes at them because they don't have the slightest clue what exhausted really is in the world of chronic illness. I don't know about you guys but for me a lot of the time I get tired of wearing the mask  and pretending I'm Superwoman. I still struggle with learning to listen to my body and stay in my own lane when it comes to me thinking I can do it all. Newsflash Superwoman you can't. You will end up in bed for a week regretting it. For me sometimes I ride the line between Superwoman and actually coming to terms with the fact that there are times when I have to rest. Add a 40 hour a week job where it makes you feel like you are riding a roller coaster and physically you can't wait till the next day off just so you can do nothing but lay in your bed or on your couch because you are so exhausted you can barely move. Like these days I work a 40 hour a week job, try to maintain a social life or at least a small semblance of one, keep in contact with my family so they know I'm alive and spend some time with those I love with the few moments I do get when I actually feel good enough.  Some days it's a daily struggle not going to lie. Then there are also the things I know I need to do such as errands, balancing doctors appointments, and that pipe dream I have of getting in the best shape of my life when in reality I am struggling sometimes just to get through a shift. Sometimes it's one step at a time one day at a time. Human nature makes people want to see the good in situations. With this disease is a combination of The Good,  The bad and The ugly.  Roll with the punches and keep going. In my case grab that extra cup of coffee or tea and keep rolling and try to avoid hitting that brick wall as best I can. I wish I had all the answers. You would think after 21 years and 15 of them in remission I would. But the truth is I'm blindly stumbling in the dark like everybody else with this disease that doesn't come with a roadmap. If it's the one thing I have vowed this year was to be a lot more honest with myself and on the blog. So here's to 2020 and living more honestly. 

Just keep swimming

There are times in life when u aren't sure u will survive. Like your life is the Titanic and you are going down with it. But the truth is eventually u weather the storm. It may take months or years but eventually u come out the other side, sometimes a little battered and beaten but alive none the less. That was my life for the last two years. Hanging onto faith like a life raft and trusting the universe that everything would eventually fall in line. For me blind Faith is the hardest thing ever. Things never happen on your timeline. Always when the universe is ready to deliver. If you know how to fall then you can learn how to stand up and walk again. Sometimes it's baby steps but progress is progress. What's even harder is having faith while trying to keep a disease in check that can run rampant like a child on a sugar high. We all know with lupus its ride the wave and hang on for dear life.  But the question is what happens when the waves stop? When the boat quits sinking and everything is quiet. Some of us embrace the peace and enjoy the lull in the storms of life. Others are waiting for the waves to come again because nothing stays calm for long in the game of Life. A lot of times it's about just breathing and just putting one foot in front of the other. No matter what you are tackling. Sometimes it really is about just keep swimming. I couldn't tell you how many times when things were rough I repeated that phrase to myself. Between That and the part from Rocky where he talks about how noone will hit u as hard as life were my survival guides in life. Just keep swimming and it's not about how many times you get hit it's about how many times you can get hit and keep moving forward. Rocky and Nemo my two beacons for reminding me to keep going no matter what. The road will get rough. Thats not an IF it's a WHEN. But it's how u survive that matters, How you come through the other side. At the end of the day just keep swimming, just like Nemo. You won't be the same person you were when you walked into the storm. You will become the storm. Unstoppable, unfalterable, and a force to be reckoned with.

Another one bites the dust

Buckle your seatbelts kids. It's gonna be a rant post where you just kind of hang on for dear life while I get all of this out of my system. Here lately it seems like every time I am on social media I see posts that another lupus warrior has died. Every time I see one of those posts I have so many emotions that flood through me. Sadness that we have lost another great one, anger that we don't have a cure yet for this fucking disease that shows no mercy and wrecks havoc on us on a daily basis, and it also makes me wish that I had known them.  Unfortunately death and our own mortality are a big thing for us. I'd be lying if I said I hadn't thought about my own. It's a little bit of fear and a little bit of curiosity as to how I would die. But as curious as I am I won't fill out an advanced directive. The funny part was when I was 16 and newly diagnosed I would argue with the nurses monthly before my chemo treatments to let me fill out one. Now here we are at 37 and I can't bring myself to fill out a piece of paper that Expresses my wishes. I guess for me because filling out that paper makes it real. Point blank I don't want to think about it. I'd love to think I'm just like a vampire in the sense that I am immortal and I'm going to live forever. However I am a mere mortal we know that is not going to happen. So we are faced with the inevitable task of facing death. This disease makes me so angry sometimes on The Daily. It's bullshit that people are dropping like flies and that we have so few treatments in all of this time. Now granted there is a lot of research being done and there are a lot of drugs that are in trials that will hopefully work. But right now it's still bullshit that people are dying from lupus. I'm so proud of all the lupus warriors that are in D.C. right now. I really wish I was there with all of them too. Something's gotta change. We need better treatments, and more funding. And I know personally I'm not going to stop until I have shoved the word lupus down every person I meets throat. To me every new person I meet is one more person I can educate on Lupus. Believe me tonight if I wasn't taken down with a bad case of fatigue I would be rocking some purple boxing gloves and beating the crap out of a bag just like Rocky till I was satisfied I kicked some lupus ass. But instead I blog. And I feel what I feel and I keep swimming. And as we lose another butterfly to this horrible disease it fuels my fire even more to just keep pushing forward for me and for everyone else with this disease and never stop until we have a cure. As always just keep swimming lovlies.

Some days I'm Super Woman, Some days I'm anything but......

Hey guys! Here we are back in the saddle again. So I guess the big question is where the heck have I been since I dropped off the planet? Life happened. In the words of David Bowie Ch-Ch-Changes. I went back to school and threw myself down the proverbial rabbit hole. I spent 8 months doing nothing but living and breathing school. Somehow I came out the other side. It was kind of like running a marathon. There were moments where internally you are confident and you are thinking I've got this. Then there are the moments where you are huffing and puffing and feel like you will collapse at any second. Yea good times......Then add to it the roulette wheel that is Lupus and you are in for an unpredictable and wild ride. By the end I was just glad for a rest because I saw my health starting to decline.  The thing that those without a chronic illness will never understand is the insurmountable courage it takes to go through what we do on a daily basis and not give up. We are the silent and invisible super heros. I don't know about you but sometimes I get tired of people telling me how strong they think I am when in reality I feel like the weakest person on the planet. It feels like that moment when superman's cape is taken away and he gets handed kryptonite and it makes him weak. Only difference for us is switch out a green glowing rock with an immune system that tries to throw us curve balls on a daily basis and there you have it. For me my lupus family was the fuel to my fire that kept me going day in and day out. My reason for pushing forward.

Its funny being chronically ill in a world full of normal functioning humans. You are expected to function at their level but yet as far as playing field goes its not even close to being even. They say you don't know what its like until you walk a thousand miles in someone else's shoes. Try walking around living one day in someone else's body knowing that if anyone else normal functioning would live in your body for one day they would gladly give it up in 5 minutes. Welcome to living in a body that is like a computer that is constantly on the fritz.

Its a funny thing walking around feeling like death some days when the normal people around you keep telling you how great you look and how they cant even tell you are sick. Behind the scenes you look great but internally feel like a walking zombie.  Its that funny moment where healthy people expect you to look way sicker than what you appear. They say things to you like Wow! you function really well! Like they are amazed that you can stand upright at all, and in your zombie like pain haze you want to respond back with Thanks! it only took massive amounts of caffeine and 10 lb of makeup to look normal. However, internally you feel like your skin in on fire and that you are going to drop dead at any minute but yea Go Me! WooHoo  (insert sarcasm here)

It is the great divide. You ride the line between being chronically ill and most days feeling like luke-warm soup and other days looking normal and feeling almost normal. (gasp)  Here in lies the invisble superhero. Like Clark Kent and his superman alter ego you go back and forth. At the end of the day you just have to straighten your cape and walk away like the bad ass you are to fight the lupus kryptonite another day. It never ends. 21 years later with perfect bloodwork and all I still struggle with my daily symptoms and riding that line between being a super hero bad ass kicking lupus ass and taking names and being dropped to my knees because of a flare that was brought on by god knows what.

Its been a year of survival for me. Testing my limits and seeing how far I can go. On my worst days I would just keep repeating to myself just keep swimming. Just push a little further. Even when all I could do was basic function then come home and crash. I learned that you have to believe in yourself even a little. Even if you think you can't do it. You might just surprise yourself.  Moral of the story my fabulous fellow super heros  Just Keep Swimming. I'm not saying its going to be easy. You are going to want to quit a thousand times but when you do have those thoughts remind yourself why you started and push yourself just a little bit. You can do it. Remember your speed doesn't matter, forward is forward.

The Art of War

Usually the goal of a war is to win the battle. In the land of Lupus there is no winning the war. you can try to subdue the enemy all you want but ultimately the enemy is on a suicide mission to take over under any means necessary. Imagine your body as an army. Your white cells are the white knights sent to protect your body from evil, except one day something happens. A potion is given to the army. Subliminal messaging if you will, sent to reprogram them to think differently. To think something other than I must protect this vessel. The army is then reprogrammed. They are then taught the vessel is the enemy. So then the war begins from within, Attacking the new enemy and causing destruction. There is one flaw however in the reprogramming. The King was not reprogrammed. He is the only one who knows how things should be instead of how they are. Thus the anarchy begins. The army starts attacking their own men all the while proudly pronouncing to the king "We got another one Sire!The king is perplexed. What are these men doing? Why are they killing their own people? The casualties begin slowly at first then pile up rapidly. Welcome to Lupus.


You realize at a certain point things will never be what they once were. The pieces of your previous life become the casualties.  Loss of relationships, jobs you cant do because of physical limitations, loss of the ability to have children due to medications you cant control.  These are all of the things lupus took from you.   It all becomes like a war zone. Blown up pieces of your old life scattered around you. You become weary. Tired of fighing the same never ending war year after year. You wave the white  flag out of desperation. You finally give up. You give up any power you think you have. This is when the healing begins.

Isabel Allende once said "we don't even know how strong we are until we are forced to bring that hidden strength forward. In times of tragedy, of war, of necessity, people do amazing things. The human capacity for survivial and renewal is awesome."

As bad as this disease is and as much as it will take from you it will give you things and teach you just as much. After almost 20 years with it you begin to feel like you are made of steel. You learn to ride the waves. You also learn never to let it take you under. You fight back to somehow get back to the person you once were. Maybe we never stop striving to get back to the person we used to be. I know I never did. I refuse to let this disease take me out. Sometimes the will to fight is stronger than anything else.  The human spirit is a hard thing to kill.

You mourn the loss of your previous life and then you just keep going, Through the good, through the bad, through it all. You find life again. You learn to live again and you learn to take care of this body that has a mind of its own. Eventually you show it whos boss. There is life after Lupus, even if in the beginning it seems like there isn't.

I've got a date with destiny

There are dates in your life that will always stick out to you for one reason or another. For me one of those dates is July 29th, 1998. That was the day my life changed. No One  prepares you for life with a chronic illness. Its one of those things that doesn't come with an instruction manual. They say write what you know. What if most of what you know comes from being sick? I've been sick almost 20 years. Guess you could say I have an unofficial P.H.D in being a professional patient. I know which veins they'll get the best stick from for drawing labs, which hospitals have the best food, nicest nurses etc. Every story has a beginning most of them starting with something great like once upon a time, or it was a dark and stormy night. Mine begins with this one time at band camp. Ok, it wasn't band camp but it was high school ROTC. Up until my sophomore year things were normal or about as normal as can be for a 15 year old girl in high school. It was over the summer during ROTC camp that symptoms started appearing. It started with joint pain, Then the unexplainable rashes, eyelids and legs swelling. After 6 months of doctors only treating symptoms I was finally sent to a specialist who figured out I had SLE with kidney involvement. Within 2 weeks everything changed. my life became chemo and steroids, prednisone to be specific. Ask anyone whos taken it, its the best worst drug that you can find. It helps tremendously however the side effects are wicked. Includes fun side effects such as a case of the nonstop munchies, mood swings, in my case a bone disease called avascular necrosis and lets not forget the steroid high as I call it. You feel like superwoman. I loved it. I could clean the whole house and felt like I had energy for days. I also don't know when to rest. So after a short burst of energy then came the crash with the crippling fatigue. Something they don't tell you is the fatigue never quite goes away or in my case it didn't.  It feels like having the flu and running a marathon at the same time.  Constant exhaustion no matter how much sleep and rest you get. I've had points in time where I felt great and had no fatigue but it was  a delicate balancing act of eating really healthy, getting enough sleep, exercising and avoiding all forms of stress. At least that is my trifecta for feeling good. With Lupus there is no solid equasion like E=MC squared. At the very least its predictable in its unpredictability. I had 7 years of being sick and in a flare up, followed up with 13 years of remission . No One prepares you for remission either. Its a weird feeling. You are lucky because you have survived the storm so to speak. You've made it out the other side. There's so many emotions that go with it. Relief because you are out of the worst of it, slight guilt because you see others with your same disease who are fighting day in and day out just to survive and here you are virtually normal. However we all carry the same scars. Members of a fraternity no one asked to pledge. Most days you are striving to hit that happy medium where your meds are working and you feel great. After almost 20 years you gain some experience and knowledge. In the beginning I didn't know anyone with my disease. It was a number of years before I started connecting online with other people that had what  I had and answered with the phrase "me too" Its a comforting feeling when someone says "Me Too" Its the universal phrase for you aren't alone in this.  If I could go back in time and tell that scared 15 year old something it would be hang in there. It gets better and you will weather the storm. You will survive this. The dictionary defines the word Hero as a person who is admired or idealized for courage, outstanding achievments or noble qualities. I don't know about you but most people who are heros didn't ask to become one. They were amazing people that survived extraordinary things and did what needed to be done. I have a list of hero's but that's another blog for another day. I fought against the idea for a long time about being a leader and being the example for others. But the universe had other plans as it always does. I found myself meeting person after person who was newly diagnosed and giving my experience and helping any way I could. So here I sit almost 20 years after hearing the words you have lupus. I always wanted to help people who were newly diagnosed. I guess in a way helping and being there for people so they wouldn't have to go through what I did. Fighting the good fight alone without a me too person. I had my family and friends so it wasn't like I was completely flying solo. But not a "Me Too" person. I guess my advice to the newly diagnosed would be  Hang in there. Find your tribe so to speak. People who just get it. Find something you like to do that you can do when you are resting and have downtime because you will have lots of time when the bed is your best friend. Weather it be television or sewing, writing, playing a game etc. Just something to distract yourself. Splurge on a good pillow and blanket. Being comfortable is the best when you are feeling like crud. Learn to rest. I'm still learning this lesson because most of the time I don't know when to stop. But learn to listen to your body. Embrace the good days when you feel good and make the most of them because there are going to be days when you feel like you've been hit by a truck. On those days rest but on the good days be aggressive and do the things you feel you can when you have the energy. Its rough I'm not gonna lie. There are days where its not all kittens and unicorns and rainbows. Those are the tough days. Just rally your tribe around you on those days and hang on and ride the wave till you feel good again.  I'm not an expert by any means. I don't have all the answers.  I'm just a girl with a disease called Lupus  fighting the good fight every day. Eventually you find your tribe and you find your rhythm and you learn to keep going no matter how hard it gets because somewhere out there someone else needs to hear the words  "Me Too" to help them on their journey.