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.