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......

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.