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One Tough Spoonie

Bianca Miranda

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NEW BLOG POST ——— So on my way to my infusion on Tuesday, i cried! Like a lot ... but I needed too. And I might have even had a cry sesh yesterday. Why? Because this life is freaking hard! I am scared so often! I literally have no idea what’s happening sometimes. Trying to figure out flare, sick, side effect, medication, missing a med, etc. It’s constantly regulating everything and keeping track. It isn’t easy. Not even one bit. So, when times get hard ... or I need some inspiration to keep fighting. This is my playlist. It’s short for now, but I am interested in adding more. Some please drop below your songs !!! To see my blog post please click the link in my bio 🤗 #fightsong #music #songs #lyrics #blogger #autoimmunedisease #justkeepswimming #lupusadvocate #lupus #lupusblog #benlysta #invisibleillness #butyoudontlooksick #spoonie #chronicillness #chronicpain #newblogpost #blogpost #linkinbio #warrior #strength 💜💪🏼

Truth— if you would have told me years ago that I’d be here, I actually wouldn’t have been surprised. Some people’s sickness came out of nowhere and it hit them like a ton of bricks. For me, it still did that once the actual lupus showed it’s ugly face fully. But I was always sick, not “normal”. As time goes on, I have to find strength inside myself I didn’t know existed. This life is full of trials and it hasn’t gotten any easier. If anything, it’s actually gotten harder. But with each punch life throws at you, you learn. You learn how to navigate, you learn to try and calm your mind, you learn what actually deserves your energy. Because when you’re limited on energy you need to watch what you let consume it. I won’t forget when I was told what was actually wrong with me. After wondering for so long... but they never actually told me how it would change my life forever. There isn’t a preparation for the life of chronic illness. But we get through it. We take the punches and keep going. Sometimes we are face down in the mud but we make the choice to get up and try again. That’s strength. The choice you make to keep going when it’s so much easier not to. We must find it 💜 #autoimmunedisease #strength #invisibleillness #butyoudontlooksick #chronicillness #chronicpain #keepgoing #justkeepswimming #spoonie #spoonielife #choice #lupus #lupusawareness #blogger #life #mentalhealth #anxiety #depression

Benlysta infusion #2 💜✌🏼 this time I was giving two premeds! So I am hoping this goes well. Had a little bit of a coughing spurt but I think I’m alright. They are watching me closely. But like a dumb ass I didn’t bring my inhaler: but I’ll be okay 🙏🏼🙏🏼 send prayers and positive vibes please 💞🥰🤗 This battle isn’t easy and it’s hard. You have to be brave and never stop... because this life brings some of the most scariest things to you and you must keep be prepared to face it! 💪🏼💪🏼 #lupus #lupusawareness #benlysta #infusion #infusionchair #lupusadvocates #autoimmunedisease #chronicillness #chronicpain #butyoudontlooksick #invisibleillness #brave #courage #strength 💜

** OLD PIC ** PSA— sorry if offend anyone with my gesture. — but I generally feel I need to put my feelings into what’s been said by @drphil and right now this is my gesture to him and his nonsense that came out of his mouth. Do you see the green shirt in the background ... that’s my HUSBAND AND CARETAKER!! The greatest of both!!!!!!!!!!!!!! He is ONE IN THE SAME! We took these things called vows when we got married —— SICKNESS AND HEALTH! My husband has been with me and has been been my best friend since I’m 16. Every single hospital visit, procedure, scan, blood draw, test, doctors visit - HE IS THERE. And let me tell you — it’s his choice. It’s only been recent that he stopped coming to the blood lab because I told him not worry and I’ll be fine. He is now coming with me to every infusion. He drives me hours to doctors appointments far away! He even drove to my lupus ambassador training where he sat in a hotel room for 2 days because he supports me. The fact that Dr. Phil said this hurts. Do you know why? Because this was one of the biggest insecurities I used to have! I always worried that he’d get up and leave one day, find someone normal— that he didn’t have to take care of. It took me along time to come to notice and learn it’s out of love and respect that he is by my side. To be honest , I wouldn’t want anyone else by my side. He knows my medical history almost better than I do. He calls my doctor when I’m too scared. He asks a lot of the hard questions. He wears a purple Mohawk to the walk to end lupus. He takes care of me every single day. He does SO much! He helps me. He lifts me. He keeps me going. He believes in me more than I believe in myself. He brings me closer to God. He helps me find faith. He reminds me that everything is going to be okay — every single day. He watches cartoon movies with me. He sacrifices SO much! I couldn’t be more blessed than any woman in the world. And if DR. Phil can’t see that you can be both, then he isn’t as smart as I thought he was. I thank my husband for being my love, caretaker, best friend, advocate, protector, provider, and more. Shame on @drphil for what he said. And I simply won’t have it. #100outof100

I’m beyond tired. Just go go go until you can’t go anymore. It seems like that’s the life I’ve grown into. Ever since I can remember. I always just kept going until my body would wipe out. Even before I knew i had lupus, this was always the case. I couldn’t do as much as everyone else but I always tried. But I am more than tired, I’m exhausted, fatigued, my body just feels like I couldn’t even crawl if I needed too. It’s a terrible feeling. Everyone on the outside says ... drink coffee, sleep more, etc. — it doesn’t help. I don’t even know if sleep can fix the tired that comes with lupus. I try to be strong, stronger than you could ever imagine. Strong for myself, my husband, my family, and those around me. I try to make it seem like I’m okay when I’m around them when inside I’m falling apart. Those really close to me know the truth. But the the outside world I try to show my very best. But sometimes even with 10 pounds of makeup you can still see the darkness under my eyes, the swelling in my face, how I can’t sit comfortable, how I walk a little funny, how trying to stretch because something hurts, how I won’t carry my purse on my left shoulder, how I always carry snacks and water, how I sanitize my hands like there is no tomorrow, how when you’re not looking I close my eyes, and so much more. I’m just so so so tired. And you need to be strong to live with such a disease, but it’s SO hard. Lupus is me..: it’s my body... being stupid. Not working correctly. It’s not something I can shut off, it doesn’t go away, and it certainly reminds me of its presence everyday. We all encounter so many medications even if it means just a little relief from all of it!! Plus lupus brings so many other issues with it. It never comes alone. Sometimes my whole life feels like a fog and I wish I could snap out of it but I simply can’t 😔 #autoimmunedisease #chronicillness #invisibleillness #chronicpain #strength #strong #lupus #lupusawareness #lupusflare #lupusadvocates #exhausted #sickandtiredofbeingsickandtired #butyoudontlooksick #wolfpack #spoonie #spoonielife #anxiety #depression #chronicfatigue #curearthritis #benlysta #dysautonomia #prednisone #life

🙌🏼🙌🏼🙌🏼 sometimes people just wont get it. And I’ve learned over the years living with lupus, that sometimes less is more. Do I talk about lupus way too much, probably. But how do you not when it has changed your whole entire life and everything you ever thought it’d be! The issue is people will still have their opinions, which is fine, but sometimes it’s hurtful. I catch myself wanting to give someone a very long explanation when i hear “oh,but you look great” or “you look great, so who cares”. When I hear those comments I pause. Everything inside of me just wants to go Lupus encyclopedia on them. Explain what an invisible illness. Tell them about how screwed up my insides are. Sometimes I do. More often I do. But then I often get one of two responses— they repeat that I look okay on the outside so who cares or I get the shocked scared look ( where they have no idea what I just said and are overwhelmed ). What post people don’t get, is for the most part we show them what we allow them to see. So if you only see me out with makeup on looking decent, that’s the only thing you’re going to know. If you are someone who’s only see me at my worst, you’re going to think how screwed up i am. But the truth is my life with lupus is a constant rollercoaster, it’s not days, it’s minutes. It changes so fast it can make your head spin. And sometimes no matter how hard I try to explain this, there are some that just won’t hear it and will not accept it. They think they know what’s right for me and I don’t. But that’s simply not true. I live in my body, not anyone else. Even my husband says the hardest thing is that no matter what he can’t feel what I feel, he doesn’t live with I live with. He is learning as time goes on. There isn’t a simple equation and there isn’t a one size fits all solution. This is something I have to work at every day and each minute of the day. I just wish people on the outside could understand that. We are trying SO hard! It might not seem like it to them, but little things are huge accomplishments for a Spoonie! #lupusawareness #autoimmunedisease #chronicillness #invisibleillness #lupus #spoonie #chronicpain #butyoudontlooksick #rheumatoidarthritis

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