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. 

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......