sally-rouge

[sally-rouge]

Priorities, I has 'em!! The flare continues but it turns out it's the kind where I'm stuck in fight-or-flight and can't eat or sleep much (which is why I'm up now) and the only thing that stops me from wanting to throw up or start shrieking with panic is to stay busy!! That's hard when you're running on fumes, but the upshot is that I've done this before and I kinda know how to make the most of what I've got. Here's what I've accomplished: - I spent the afternoon with my westie-bestie for a little bitch sesh. Sometimes all you need in life is for someone to say "wow, that sucks" so you can stop feeling guilty for struggling. We did a whole lotta that for each other today. It helped me refocus where I want/need to be spending my limited energy. - I got the first audio sample of the book I signed on to produce finished and submitted on time, despite the manuscript being delayed almost two full days. - I'm maintaining my Duolingo streak, albeit with weekend freezes. But damn it!! I'm still doing it!! It's the only thing I haven't fucked up in over a year, and some days it feels like the only thing I can do right. - I made lunches and coffee for my family after being too exhausted to do it yesterday. - Aaaaaand I deleted all of my online dating profiles. Because right now I just want to focus on me and what I'm doing and I'm not keen on bringing new people into the mix. Perhaps I'll try again later when I've figured out... I dunno, maybe why I even needed 3 different dating apps in the first place, I guess?? I don't know. I just know that I need to stop spreading myself so thin and dating is one of the few areas I can sacrifice. So... Priorities. I has 'em. . . #priorities #smallvictories #selfcare #symptomflare #chronicillness #chronicpain #voiceover #voiceactress #vox #familyfirst #timeforchange #duolingo #maintaining #hardchoices #prioritizing #sickbutinvisible #sicknotlazy #sicknotweak #knockeddownbutnotout #imafighter #imnotokay #illbeokay #justnotyet #ihopeIcansleepsoon https://www.instagram.com/p/BysEqJigXoh/?igshid=leagin3v7ftn

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I am not ok, and I am not ok in a way that I think chronically ill people are often afraid to discuss: heartbreak and the way it can kick symptoms into overdrive. The details don't matter, because the point I want to make is that you need to understand why chronically ill people are often afraid to take chances by putting their heart and/or hopes on the line. Because for us, we don't just feel "a little off"... Stress can, and usually does, make symptoms not just bad, but sometimes as bad as they can get. Everybody gets sick to their stomach when they get back news, sure. But my guts are cramping so hard you can feel it if you put your hand on my abdomen. My heart is beating well over 100bpm even though I've been seated for over an hour and barely moved except to use my phone and take my blood pressure. Speaking of... My blood pressure is spiking high and then dropping rapidly. i'm in an abnormal amount of pain, I'm nauseated, I'm dizzy, it's getting hard to think through all of this... I'm a fucking mess!!! All because I dared to go after something that really made me happy, and it didn't pan out. 🤷 And I have no idea how long I'm gonna feel like shit, either. You would think that once I calmed down and stopped being stressed, the symptoms would do the same, but you would be WRONG, because this is chronic illness. There are no rules, only guidelines, and they're vague at best. Stress = flare, but there is no way to factor for "how long". I took a chance. I don't regret it. I'll do it again because I'm a tenacious idiot who believes she deserves happiness and is willing to squeeze it from the lifeless body of Fate if necessary... But you gotta understand why it's probably gonna be a while before I'm into the idea again. Why it's hard when you wrestle with these kinds of shifting variables and high stakes to be willing to put yourself on the line. I'm risking way more than you realize. . . #chronicillness #chronicpain #stress #symptomflare #sickbutinvisible #butyoudontlooksick #chronicallyill #realtalk #heartbreak #disappointment #imnotokay https://www.instagram.com/p/BypYKFcgNT5/?igshid=1a2r2vp0bb8hg

[sally-rouge]

Jersey hair is in full effect . . #jerseygirl #thehigherthehairtheclosertogod #bighair #bighairdontcare #curlyhair #curlyhairdontcare #redhead #itsgoinginamessybun #fuckeverythingaboutthis https://www.instagram.com/p/ByldA0hgvIf/?igshid=4dpso3jpyyua

[sally-rouge]

DARK PHOENIX . . #darkphoenix #familyouting #amctheaters #xmen #xmendarkphoenix https://www.instagram.com/p/ByeR0dIAeam/?igshid=15x0zwoj7ical

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YAAAASSSSS!!!!! . . #nocontexttheater https://www.instagram.com/p/Byb9jCuAMfv/?igshid=hydibq8jwpnk

[sally-rouge]

Went so damn hard at PT, I snapped the band of my toering. Had to stop what I was doing to take off my shoe and sock so I could remove the shrapnel. 😅 . . #oops #beastmode #isthereajewelerinthehouse #toering #fml #physicaltherapy #gohardorgohome #nevertellmetheodds #ieatstackedoddsforbreakfast #zebrastrong #stronk #damnit #ireallylikedittoo https://www.instagram.com/p/ByWHhLigPSk/?igshid=1alc2ozk6do9h

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From humble beginnings... Cable machine lat pulldowns are one of the only exercises I've been consistently doing since I started physical therapy almost 3 years ago. I started after about 6 months and it's been the ONLY exercise I've been able to measure my progress in cold, hard numbers. When I started, I did it at 10lbs (2x10), and it was HARD!!! Before I dislocated my rib a few weeks ago, I was up to 100lbs (2x10). I went from being in the ZERO percentile to 79th percentile. Now I've had to drop the weight and add more reps to rebuilt muscle strength and stability while my rib settles down, so I'm not moving quite as much weight, but dude... Dude. From ZERO to 79th!!! That's almost a B-!!! It's a passing grade!!! On the days when I'm frustrated because it feels like every joint is loose and about to slide out of place, and I haven't slept properly from pain, and everything is making me want to cry because it's TOO HARD, it helps to remember that I don't ALWAYS feel weak and delicate. Sometimes I'm a MF beast!!! (Shout out to my personal Dream Team, @cassiehippensteel & @connor.ryan113, for helping me realize my own potential. 💖) . . #ehlersdanlossyndrome #eds #fibromyalgia #fms #thoracicoutletsyndrome #posturalorthostatictachycardiasyndrome #pots #degenerativediscdisease #osteoarthritis #zebrastrong #zebra #butyoudontlooksick #progressyoucanmeasure #ieatstackedoddsforbreakfast #nevertellmetheodds #sickbutinvisible #sicknotlazy #sicknotweak #physicaltherapy #foothillssportsmedicinephysicaltherapy #beastmode https://www.instagram.com/p/ByTc6_4gn8o/?igshid=14n6wuhs204fa

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I remember when gas was .95/gal and we would go driving to get lost for fun. Now I'm like, "yes I know it's the birth of your first child and we've been friends 20 years, but can you Skype me in, please? I can't afford to drive anywhere extra." 😑 . . #icantaffordthis #lifeisexpensive #gaspricessuck #thankgoodnessforsubcompactcars #forrealtho #hmuondiscord #icantaffordtodrive https://www.instagram.com/p/ByJXF9WAxgd/?igshid=1aw0pcjbutjan

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Dear Social Security, In case you were wondering, my DNA is still utterly borked and producing faulty collagen, my condition is still degenerative and getting harder to deal with every day, and I still lie through my teeth about how my life is going (especially on social media) so I can cling to something resembling "normal". Please don't take away my benefits, they're keeping me alive. . . #ehlersdanlossyndrome #eds #fibromyalgia #fms #osteoarthritis #thoracicoutletsyndrome #posturalorthostatictachycardiasyndrome #degenerativediscdisease #chronicillness #sickbutinvisible #butyoudontlooksick #sicknotlazy #sicknotweak #socialsecurity #ssdi #medicare #pleasedonttakemybenefits https://www.instagram.com/p/ByI6crrAur5/?igshid=450ou47r9q5d

[sally-rouge]

I write notes on the lids of the fruit cups I put in my family's lunches. Here are some of them. . . #ilovemyfamily #lunchnotes #madewithlove #dork #fruitcup #myhandwritingsucks https://www.instagram.com/p/ByDWvpKAoZj/?igshid=1thle9yzepzy8

[sally-rouge]

📸: @lovelee_lunaz . . #blackandwhite #pinup #model #boudoir #boudoirphotograpy #lingerie #azmodel #azphotography #photooftheday #legs #sallyrouge https://www.instagram.com/p/ByDBYwhAMpM/?igshid=1dbpvmieub7e3

[sally-rouge]

Speaking of sass... 📸: @mvphotography11 . . #model #fishnet #skiesoutthighsout #outdoorphotography #datass #altgirls #altmodel #gothgirls #tattooedladies #gothgirlsdoitbetter #boots #tontonationalforest #coonsbluff #azmodel #azphotography #lingerie #photooftheday #sallyrouge https://www.instagram.com/p/Bx--_Jkge5I/?igshid=1ie6e9hp7kprn

[sally-rouge]

📸: @lovelee_lunaz Sass: me . . #model #altmodel #outdoorphotography #redhead #redhair #sassy #tattooedgirls #tattooedladies #azmodel #azphotography #photooftheday #sallyrouge https://www.instagram.com/p/Bx--b0fAuNp/?igshid=42sfwng7zn8x

[sally-rouge]

Detective Pikachu time!!! (And I remembered to mask up before entering the theater this time so I should be safe from germs.) . . #movietime #TwinDay #paxtwins #detectivepikachu #vogmask https://www.instagram.com/p/Bx8ddprAIHI/?igshid=18t2ttyt3h113

[sally-rouge]

📸: @mvphotography11 . . #model #altmodel #altgirls #outdoorphotography #smokebombphotography #natureshoot #fishnet #redismycolor #tattooedgirls #tattooedladies #photooftheday #azphotography #azmodel #sallyrouge #redhead https://www.instagram.com/p/Bx5_WQMgKyV/?igshid=15pwgyshvc4sm

[sally-rouge]

📸: @lovelee_lunaz . . #model #vintage #sexylibrarian #boudoirphotograpy #boudoir #highheels #tattooedgirls #tattooedladies #foottattoo #azmodel #azphotography #altmodel #altgirls #photooftheday https://www.instagram.com/p/Bx5-_y1gzOD/?igshid=lia5vgkaah2n

[sally-rouge]

May is Ehlers-Danlos Awareness Month and I've been quiet all month. It's not that I don't have things to say or contribute... It's that I've been struggling. Intensely. For months. My joints have been unstable so I've had more subluxations and dislocations. The pain makes it hard to sleep so my dysautonomia has been in overdrive causing digestive, blood pressure, temperature regulation, and fatigue issues. Dealing with all of THAT has deeply impacted my mental fortitude, and then when you pile on the outside stress factors... Well. I'm pretty sure if you looked up "hot mess" you'd just get a picture of me right now. And through it all I've been asking for help - begging really - only to find that the people I've gone to are unavailable for one reason or another. It happens sometimes. The world isn't obligated to help every time you fall apart. But lemme tell you what NEVER helps: Platitudes. Please don't tell me how strong I am or that I'll make it through because I've been through worse. You think I don't know the odds I've beaten to be where I am?? I know. I know I'll get through things, because I always do, because I've had to... But being reminded that I've had to become a Titan and carry all the weight on my shoulders by myself doesn't help when I'm crying that I'm about to drop everything. It doesn't help to be told I've been through worse. It makes me feel stupid for not being able to handle things, and weak for asking for help when I need it. Don't tell me I'm strong when I'm telling you I'm too weak to continue alone. I know I am strong, and truth be told... I kinda resent how I got to be this way. Nobody is SO strong they can go without help forever. If I'm asking for help, it's because I need help, not platitudes. . . #ehlersdanlosawareness #ehlersdanlossyndrome #eds #itsoknottobeok #noplatitudes #imnotthatstrong #sickbutinvisible #sicknotlazy #sicknotweak #spoonie #butyoudontlooksick https://www.instagram.com/p/Bx3RyOIDB82/?igshid=14bt5se6ffjz7