@THEmoment @roseleevader - Tumblr Blog

A few weeks ago I got to see Moulin Rouge. I feel so lucky to add this to the list of shows I’ve gotten to see live 💛 Something that’s been on my mind since going (on a high symptom day) was how inaccessible the experience is. I’ve really come to appreciate options like Hamilton on Disney+, so there’s an opportunity to see a live version. Because let me tell you, the soundtracks have nothing on hearing the energy of actors preforming their roles. (at Keller Auditorium) https://www.instagram.com/p/CoIetRBvWIb/?igshid=NGJjMDIxMWI=

Find someone who looks at you the same way I look at bagged water after being dehydrated for a month 😉😅 • #infusion #potsie #port #liloandstitch #sweaterweather #invisibleillness #curlygirl (at Oregon) https://www.instagram.com/p/CnSpqDsPYdU/?igshid=NGJjMDIxMWI=

#infusion #potsie #port #liloandstitch #sweaterweather #invisibleillness #curlygirl

My poor, sweet feisty Meisty. I wasn’t ready. You should’ve had more time. We should’ve gotten so many more years together. Your fancy paw and your stink faces, the way you kept the dogs in check and ran the household, your never ending need for cuddles. I’m so grateful you didn’t have a long decline, although I wish I’d gotten more warning that this was coming. I held you while you took your last breath and I’ll miss you until mine ❤️‍🩹 #fuckcancer #furmom #resteasy #feistypets #mykitten (at Salem, Oregon) https://www.instagram.com/p/Cmws3NVPFxF/?igshid=NGJjMDIxMWI=

#fuckcancer #furmom #resteasy #feistypets #mykitten

If consistency is the key, no wonder I haven’t gotten the door unlocked 🤷🏽‍♀️ • #imtrying #consistency #curly (at Oregon) https://www.instagram.com/p/Ck1bAszSJH0/?igshid=NGJjMDIxMWI=

#imtrying #consistency #curly

I’ve never been good at pacing. For my MO, I really prefer to bust everything out and be done with it, even if that means I’m completely exhausted and wiped out at the end. I’ve always been the person who finished early and takes on extra. I would look at people pacing their activities and it made me sad to see them limiting themselves. I wondered how they were able to have the self control to stop and start so many times. I wondered how they paced the same way people wonder how I as a vegetarian, don’t eat bacon. Answer: you just don’t eat then bacon, or you just do the pacing. You just keep putting one foot in front of the other, metaphorically and literally. Because moving forward is all there is. While I was wondering how other people place themselves so effectively, I wasn’t realizing that bodies are on electrical breakers and that mine was about to be flipped. I wasn’t realizing that you don’t just get to call an electrician to fix the broken fuses that are fried. You have to jiggle some burnt wires and throw some tape around the whole thing and hope everything keeps working together long enough. Sometimes pacing isn’t a choice. It’s something your body forces you into. And I’m learning how to let that be ok with me. (at Salem Hospital) https://www.instagram.com/p/CkrAnFwvw5X/?igshid=NGJjMDIxMWI=

Today is a gift. That’s why we call it the present 💝 • • • I’m having a hard time recently with comparing myself with what other people are accomplishing or celebrating or what they are able to do with their lives. It’s hard not to feel like there’s so much time lost to illness; like I need to catch up. It’s sad and it hurts. My little green eyed envy monster is knocking at my door. • In case anyone else needed the reminder today: Everyone’s timeline is different, grief is weird and healing is nonlinear. • You won’t miss what’s meant for you 💛 (at Pacific Northwest) https://www.instagram.com/p/CjD8hoEvR-_/?igshid=NGJjMDIxMWI=

First, think. Second, dream. Third, believe. And finally, dare. -Walt Disney • When I was a kid I lived in Los Angeles. There were TONS of commercials and radio ads that would ask, “do you wanna be the next ‘insert popular Disney and Nickelodeon character’? Call this number now!” • If it wasn’t obvious, a lot of those were scammy and not totally legit. But because I was into acting and singing, I really wanted to try. My mom took some basic headshots of me, we printed a ton of them and sent them to every talent management person we could find an address for, and I actually got called back! I went on 5 or 6 interviews and actually signed with a manager. Her office had a huge window that looked over the Hollywood sign. • My aspirations never really took off because even as a kid, my anxiety was pretty unmanageable at times and it was deemed too stressful for me to handle at my young age. When you’re a kid being famous sounds cool, and I was always super disappointed and hard on myself for not being able to make it happen back then; which is a bit excessive considering I was literally 7 or 8. • Getting to do this shoot was in some ways healing for that inner child of mine who wanted to be *someone*. I’m so glad that I was able to make this connection, have this experience; even if it pushed me into a flare. The little kid in me is so proud of the adult who made it happen, even if just for a day. • Another gorgeous image from my shoot with @catamosphotography! • #childhooddreams #makeitcount #innerchildhealing (at Pacific Northwest) https://www.instagram.com/p/CilJPsTPEh5/?igshid=NGJjMDIxMWI=

#childhooddreams #makeitcount #innerchildhealing

How do you manage tough times? • As my chronic illnesses ebb and flow, the stages of grief also sneak in and out as well. Recently, I’ve noticed myself bargaining. I’ve been stuck with a lot of what if’s in my head. • “What if I just eat that food that’s made me sick for the past couple years?” “What if I just stop getting infusions and taking pills all day long?” “What if I just stop participating in the daily maintenance my chronic illness has demanded of me?” • I know logically, the answer is I backslide and lose progress that I’ve made. But that just leaves me with the overwhelming frustration of being chronically ill; planning my days around symptoms and rest and medical admin and appointments and recovery It seems impossible that I’m going to be dealing with symptoms for the next 50+ years. It sounds silly and not real and again, impossible. And I know that I should just take things one day (hour, minute, second) at a time. But I want a future plan; I want to know I have things to look forward to. I don’t think anyone really has an answer for how to manage this forever. At least not a satisfying one. All I can really do is keep trying and hoping that “This too shall pass” and things won’t feel quite so hard at some point. 📸: @catamosphotography (at Oregon) https://www.instagram.com/p/CiTDtmgvgJe/?igshid=NGJjMDIxMWI=

I'm still a believer but I don't know why✨ • 📸: @catamosphotography • I often talk about my body and brain as if they are separate entities from both each other and myself. • There’s my brain is demanding we do fun things to make up for the drudgery of never ending medical admin and appointments. It’s depressed and anxious and it’s tired and just can’t quite keep up with processing all that’s happened (happening?). • Then there’s my body. My body that’s been in pain since childhood. That I’ve become so disconnected from. because not being attached to my body means I don’t feel it as much. My body that is screaming at me to allow it more rest. But resting feels like all I do and I want more out of this life. • My body and my brain have become separate from me as a coping and survival mechanism. I’ve become detached from painful things in my life and unfortunately that includes some pretty vital pieces of myself. It’s easier to deal with a depressed brain than a depressed Rose. Easier to deal with a broken body than a broken spirit. • #mentalhealthawareness #mentalhealthblogger #ptsdawareness #mentalhealthtips #biracial #curlyhairdontcare #curlynaturalhair #naturalcurls #naturegram #naturegirl #butyoudontlooksick #sickandtiredofbeingsickandtired #sickchick #chronicallyill #chronicfatigue #seizuressuck #chronicillnesscommunity #chronicpainsucks #invisibleillness #chronicallyawesome #ehlersdanlossyndrome #fibromyalgia #disabledmodel #disabledpeoplearehot #disabledblogger #disabilityawareness #spoonie #vintagefashion (at Oregon) https://www.instagram.com/p/CiN8AaCPrxq/?igshid=NGJjMDIxMWI=

Some days it feels like all I do is manage symptoms and rest; some days that’s pretty realistic. The drudgery of trying to manage tasks your body should manage on its own is so damn real. • So I’ve been trying to spend time with friends and go out on little adventures and try to meet people. Even when I’m tired, even when I feel like I’m doing more than I should. I’m trying to string together happy moments and little pieces of joy. • I’m hoping that I can string together little bright moments so that I can decorate my mental space with glowing, cozy, warm and ward off the dark a bit. • 📸: @catamosphotography • #effyourbeautystandards #beautyshoot #medical #healthcare #curls #curlscurlscurls #curlyhairinspiration #biracial #mixed #modeling #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #spoonie #invisibleillness #zebra #chronicfatigue #chronicpainwarrior #youdontlooksick #babewithamobilityaid #hypermobile #seizuressuck #photooftheday #pnwonderland #pnwlife (at Pacific Northwest) https://www.instagram.com/p/CiIzaZ1PnRC/?igshid=NGJjMDIxMWI=

Right now, I’m stuck in a boom/bust cycle. Honestly it’s been years that I’ve been stuck, but it’s a lot more pronounced since my big sick. • If I have even a smidgeon of energy, I’m running with it and adding some caffeine on top and trying to fit as much as possible into the small window of opportunity. But then I inevitably overdo it, crash, cry, and feel hopelessly frustrated at the vicious ups and downs that I can’t seem to break away from. • Any chance I have to find happy, I desperately jump towards but that’s just not conducive to pacing and tending to the needs of a chronically ill body. Damn is that hard to come to terms with. • 📸: @catamosphotography • #blog #bloggervibes #pacing #invisibleillness #instadaily #protectyourenergy #positiveselftalk #burnout #serotonin #migraine #nervoussystem #deepbreathing #mindbodymedicine #portlandoregon #portlandnw #pnwlife #pdxphotographer #chronicfatigue #chronicillnesswarrior #chronicpainawareness #arthritis #ptsdawareness #dysautonomia #potsie #inflammation #chronicfatiguesyndrome (at Oregon) https://www.instagram.com/p/CiIyjh-PwGS/?igshid=NGJjMDIxMWI=

Trying to push myself to fit in more happy, more good, more positive. • When I first got sick, I thought I’d end up back at my previous baseline. But at this point, I know my fight is more for quality of life than actual improvement. My baseline just isn’t where it used to be. • And if this is what I’m working with, then how do I fit all of the things into this smaller, slower life I’ve now got? I now need more calm and more rest, but I was deep into hustle culture and so very proud of my work ethic. How do I travel and work and live while inside a body that requires rest and IV fluids more than anything else? • 📸 @catamosphotography • #mentalhealthawareness #mentalhealthblogger #lifestyle #positive #disabled #disabledblogger #disabledmodel #disabledpeoplearehot #chronicillness #disabilityadvocate #chronicfatigue #fibromyalgiawarrior #anxiety #chronicpain #butyoudontlooksick #chronicpainawareness #endowarrior #modelingphotography #photography #modelphotographer #newgenerationscout #positivemindset #positivenergy #bloggerstyle #bloggersgetsocial #lifestylemodel #instablogging (at Portland, Oregon) https://www.instagram.com/p/CiIx3K2PAqA/?igshid=NGJjMDIxMWI=

I haven’t historically done introductory posts but what the hell? • I’m Rose! I’m 27, a married dog mom with a number of mental and physical health ailments. I consider myself disabled, chronically ill, and nuerodivergent. • Between appointments, I also run @roseleecollective, a co-op gift shop that exclusively features items from small businesses and brands. I started this business to help myself build a work/rest schedule around an ever-changing dynamic disability. • My partner and I currently live with family while we are getting back on our feet after my big sick. Since we have a multigenerational household, we also have a decent sized menagerie of dogs and cats 🐱🐶 • I’m an open book! Feel free to ask questions to get to know me better (: (at Oregon State Fair) https://www.instagram.com/p/CiA-xTrPwnS/?igshid=NGJjMDIxMWI=

Rediscovering my love for makeup a bit 💄 • • • • #makeuplover #maccosmetics #beautyschooldropout #lifestyle #curlyhairstyles #curlybeauties #curlpower #biracial #mixed #disabledblogger #disabledlife #disabledandcute #mentalhealth #chronicfatigue #zebrastrong #chronicallyill #potsie #chronicpainlife #fibromyalgiawarrior #dysautonomia #endowarrior #rediscoveryourself #selfdiscovery (at Self-Love) https://www.instagram.com/p/Chx-a_ov07e/?igshid=NGJjMDIxMWI=

🖤🖤🖤🖤 • • • • #makeupartist #makeuptransformation #maccosmetics #curlyhairkillas #curlycommunity #curlygirlcollective #instacurls #photofotheday #invisibleillness #invisibledisability #spoonielife #chronicpainawareness #spoontheory #edsawareness #babewithamobilityaid #endowarrior #dysautonomia #spooniestrong #zebrastrong #bodyacceptance #neutrality #model #getitgirl #inspiredmakeup #biracial (at Pacific Northwest) https://www.instagram.com/p/ChvBc0sP9pQ/?igshid=NGJjMDIxMWI=

Happy first wedding anniversary, my love 🥰 • • • We were going for a #fridaythe13th wedding but we also ended up fulfilling my middle school fantasy of having a #twilight wedding 😂🤷🏽‍♀️ the only other option that year would’ve been December and we were worried about people traveling in the snow. Triston has sworn me to secrecy about the twilight anniversary part though so don’t tell anyone 🤫 (at Garden of the Gods) https://www.instagram.com/p/ChNyZgivPim/?igshid=NGJjMDIxMWI=

#fridaythe13th #twilight

Get back to finding joy in all the little steps along the way • Fuck me. I’m unconsciously putting timelines on myself. Although I’m also trying to be a bit kinder with my self narrative so maybe I should rephrase… • I’ve been letting my goals become finish lines; as if crossing them would provide me the secret to happiness in life. My successes and unfortunately, my setbacks are rulers by which I have been measuring my self worth. And damn it, not all setbacks are even in my control, let alone indicative of my worth. • I’ll be totally blunt. I’m not loving this chapter of my life. And that’s making it hard to be present. Cuz I kinda just don’t want to be. It’s been tedious. Overwhelming. Frustrating. There’s been a lot of anger. Grief. Coping. I’m just ready to get somewhere with all of this *vaguely gestures at this existence*… • Maybe, I’ll look back and see it as all as building blocks part of some larger journey (or maybe that’s just me hoping/manifesting) but for right now, I’m trying to remember to take it day by day 💛 (at Oregon) https://www.instagram.com/p/ChAlL5Yv3H3/?igshid=NGJjMDIxMWI=

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