#butyoudontlooksick

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Some of the best moments this summer weren’t captured because we enjoyed being in the moment more.

On our “girls day” as @aniedosik and @glutenfreekids_org call it... we spent all day riding around in my sexy sports car, listening to @kloveradio, talking about boys, school, soccer and life.

What you didn’t get to see was the girls faces light up when they tried on matching overall shorts and I told them we could get them... or the beautifully echoed thank you’s when a lady at the restaurant told me how beautiful and well behaved my daughters were... or their faces covered in bronzer, mascara and lipstick at a beauty shop and the snorting giggles that followed when they realized how orange they were.

Captured in these few photos are the final moments of our “girls day” sitting in front of our house reminiscing about our day. ♥️ you two beauties more than you’ll ever know.

Some of the best moments this summer weren’t captured because we enjoyed being in the moment more. On our “girls day” as @aniedosik and @glutenfreekids_org call it... we spent all day riding around in my sexy sports car, listening to @kloveradio , talking about boys, school, soccer and life. What you didn’t get to see was the girls faces light up when they tried on matching overall shorts and I told them we could get them... or the beautifully echoed thank you’s when a lady at the restaurant told me how beautiful and well behaved my daughters were... or their faces covered in bronzer, mascara and lipstick at a beauty shop and the snorting giggles that followed when they realized how orange they were. Captured in these few photos are the final moments of our “girls day” sitting in front of our house reminiscing about our day. ♥️ you two beauties more than you’ll ever know. - 9 minutes ago

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Which do you choose? 🤦🏻‍♀️🤷🏻‍♀️ #TheInvisibleLife #TheIvisibleWar #invisibleillness #chronicillness #chronicpain #spoonie #fibromyalgia #anxiety #butyoudontlooksick #spoonielife #chronicfatigue #mentalhealth #depression #health #pain #autoimmunedisease #autoimmune #eds #chronicillnesswarrior #chronicfatiguesyndrome #endometriosis #chronicallyill #cfs #multiplesclerosis #chronicpainwarrior #ibd #ehlersdanlossyndrome #crohnsdisease #Selflove

Which do you choose? 🤦🏻‍♀️🤷🏻‍♀️ #TheInvisibleLife #TheIvisibleWar #invisibleillness #chronicillness #chronicpain #spoonie #fibromyalgia #anxiety #butyoudontlooksick #spoonielife #chronicfatigue #mentalhealth #depression #health #pain #autoimmunedisease #autoimmune #eds #chronicillnesswarrior #chronicfatiguesyndrome #endometriosis #chronicallyill #cfs #multiplesclerosis #chronicpainwarrior #ibd #ehlersdanlossyndrome #crohnsdisease #Selflove - 12 minutes ago

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I'm trying!!!
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#chronicillness #chronicpain #invisibleillness #spoonielife #spoonie #zebrastrong #butyoudontlooksick #writersofinstagram #authorsofinstagram #publishedauthor #signlanguage #asl #learning #learningsignlanguage #publishedauthor

I'm trying!!! . . . . #chronicillness #chronicpain #invisibleillness #spoonielife #spoonie #zebrastrong #butyoudontlooksick #writersofinstagram #authorsofinstagram #publishedauthor #signlanguage #asl #learning #learningsignlanguage #publishedauthor - 13 minutes ago

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LOSING CONSCIOUSNESS • My blood pressure has always been low, but ever since RCVS, I’ve had to be on a medication to keep my blood vessels open. They use blood pressure lowering medication to do that, so it’s no surprise I still can’t seem to control it. 😏
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He asked me if I have a hard time “staying awake” when my BP is in the 60s/40s. I died laughing bc I can’t stay awake for the most part, but that’s just his nice way of asking if I’m losing consciousness. 🙃 In all seriousness, I am very grateful for his expertise and willingness to change things up when something isn’t working. He’s putting me on a different medication for low BP and increasing my POTS med.
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On a random note: I found out that I was considered critical condition during my 7 week hospitalization 🏥 and that I had a 25% chance of having an ischemic stroke, hence being on stroke watch. I hate when doctors don’t do anything to actually help and/or keep patients aware of what’s going on with their own body. Nobody ever told me any of that info. 🤨 I only found out bc my cardiologist wanted records and I saw it on the first page. My feelings around this RCVS hospitalization come in layers. When I find out information that I didn’t know, I get overwhelmed emotionally. I feel like I start the grief process all over again; It takes me right back to anger, which I always think I’ve resolved. 😂 🙄

LOSING CONSCIOUSNESS • My blood pressure has always been low, but ever since RCVS, I’ve had to be on a medication to keep my blood vessels open. They use blood pressure lowering medication to do that, so it’s no surprise I still can’t seem to control it. 😏 - He asked me if I have a hard time “staying awake” when my BP is in the 60s/40s. I died laughing bc I can’t stay awake for the most part, but that’s just his nice way of asking if I’m losing consciousness. 🙃 In all seriousness, I am very grateful for his expertise and willingness to change things up when something isn’t working. He’s putting me on a different medication for low BP and increasing my POTS med. - On a random note: I found out that I was considered critical condition during my 7 week hospitalization 🏥 and that I had a 25% chance of having an ischemic stroke, hence being on stroke watch. I hate when doctors don’t do anything to actually help and/or keep patients aware of what’s going on with their own body. Nobody ever told me any of that info. 🤨 I only found out bc my cardiologist wanted records and I saw it on the first page. My feelings around this RCVS hospitalization come in layers. When I find out information that I didn’t know, I get overwhelmed emotionally. I feel like I start the grief process all over again; It takes me right back to anger, which I always think I’ve resolved. 😂 🙄 - 14 minutes ago

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Do you have a morning routine? Mine involves me prying my eye mask off and making sure it's REALLY morning and that my alarm isn't lying 😂, then taking my thyroid pill (I take Armour) and then rolling out of bed, brushing my teeth, getting dressed and then taking the dog on a 30-40 min walk. These days I listen to a podcast (usually either @jameswedmore or @lifecoachschool ). Then I come back, scramble to get the kids' lunches and snacks packed for camp, eat breakfast, drop my kids off, and then start my day.⁣
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That's my routine. No fancy meditating or journaling or ceremony. I'd LOVE to be able to include that stuff into my morning but I value my sleep to keep my hormones, AI diseases, symptoms, etc all in control, so sleep is a bigger priority to me than journaling in the morning. I DO try to fit those in throughout the day, but mornings are just too busy for me.⁣
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I bring this up just to point out that your morning routine - or any routine, doesn't need to look like some pristine IG'ers beautiful meditative feed. They all look pretty and sure can be inspirational, but don't get caught up in thinking that you CAN'T be healthy without doing it. Sometimes healthy can look like a hot mess from the outside. But it's a well oiled machine for me from where I'm standing! 😜⁣
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What’s your morning routine?

Do you have a morning routine? Mine involves me prying my eye mask off and making sure it's REALLY morning and that my alarm isn't lying 😂, then taking my thyroid pill (I take Armour) and then rolling out of bed, brushing my teeth, getting dressed and then taking the dog on a 30-40 min walk. These days I listen to a podcast (usually either @jameswedmore or @lifecoachschool ). Then I come back, scramble to get the kids' lunches and snacks packed for camp, eat breakfast, drop my kids off, and then start my day.⁣ ⁣ That's my routine. No fancy meditating or journaling or ceremony. I'd LOVE to be able to include that stuff into my morning but I value my sleep to keep my hormones, AI diseases, symptoms, etc all in control, so sleep is a bigger priority to me than journaling in the morning. I DO try to fit those in throughout the day, but mornings are just too busy for me.⁣ ⁣ I bring this up just to point out that your morning routine - or any routine, doesn't need to look like some pristine IG'ers beautiful meditative feed. They all look pretty and sure can be inspirational, but don't get caught up in thinking that you CAN'T be healthy without doing it. Sometimes healthy can look like a hot mess from the outside. But it's a well oiled machine for me from where I'm standing! 😜⁣ ⁣ What’s your morning routine? - 16 minutes ago

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It’s NOT a choice, and we CAN help. .
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📸: @b.e.frank

It’s NOT a choice, and we CAN help. . . 📸: @b.e.frank - 17 minutes ago

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❤️I always love seeing who you are. Whether you’re an artist, or a chronic illness/ms/spinal cord injury fighter.  I love to see the people behind the posts. ❤️ I realized I hadn’t put a pic of myself up in a while . So here I am; and it’s so nice to meet you all😘 #selfie #thisisme #thisisms #butyoudontlooksick #babeswithmobilityaids #chronicillnesswarrior #artistsoninstagram #invisibleillness #invisibleillnessawareness #singersongwriter #fighter #tellyourstory #canadiangirl

❤️I always love seeing who you are. Whether you’re an artist, or a chronic illness/ms/spinal cord injury fighter. I love to see the people behind the posts. ❤️ I realized I hadn’t put a pic of myself up in a while . So here I am; and it’s so nice to meet you all😘 #selfie #thisisme #thisisms #butyoudontlooksick #babeswithmobilityaids #chronicillnesswarrior #artistsoninstagram #invisibleillness #invisibleillnessawareness #singersongwriter #fighter #tellyourstory #canadiangirl - 17 minutes ago

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It is, in fact, a small world after all.

And I'm awful grateful for it.

I spent most of our trip to Florida grinning so hard my face hurt. I spent some of it crying big happy tears. I spent some of it in a lot of pain. But it was mostly grinning, and eating sandwiches, and forming wheelchair trains to efficiently work our way through Disney crowds. [Image description: A video selfie by Kevin, a smiling Hispanic man with double braids and a thick beard. Behind him, two women in wheelchairs laugh and goof off. One drives a powerchair, and pulls the second other, in a manual chair, holds onto the back of the powerchair and is pulled along. There is no audio. End.]

It is, in fact, a small world after all. And I'm awful grateful for it. I spent most of our trip to Florida grinning so hard my face hurt. I spent some of it crying big happy tears. I spent some of it in a lot of pain. But it was mostly grinning, and eating sandwiches, and forming wheelchair trains to efficiently work our way through Disney crowds. [Image description: A video selfie by Kevin, a smiling Hispanic man with double braids and a thick beard. Behind him, two women in wheelchairs laugh and goof off. One drives a powerchair, and pulls the second other, in a manual chair, holds onto the back of the powerchair and is pulled along. There is no audio. End.] - 19 minutes ago

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If you don’t seek relief, you’ll keep feeling badly. Come see us ❤️

If you don’t seek relief, you’ll keep feeling badly. Come see us ❤️ - 20 minutes ago

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Stones of love were tossed in the river this past weekend to spread the love in memory of my aunt who shared so much love with her family.

Today I'm sharing with you hoping this message of love brings a smile to your day and brightens anything that seems dark 🥰

#loverules #workharderplayharder #butyoudontlooksick #whatyouseeiswhatyouget #chronicpain #chronicillness #asthma #ostomate #illeostomy #ostomyproblems

Stones of love were tossed in the river this past weekend to spread the love in memory of my aunt who shared so much love with her family. Today I'm sharing with you hoping this message of love brings a smile to your day and brightens anything that seems dark 🥰 #loverules #workharderplayharder #butyoudontlooksick #whatyouseeiswhatyouget #chronicpain #chronicillness #asthma #ostomate #illeostomy #ostomyproblems - 21 minutes ago

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Hello friends.  I’ve had another setback with my health, and it has been a wild six weeks!  While hiking at the end of May I was bitten by a tick and contracted Rocky Mountain Spotted Fever.  I felt quite ill for weeks, but I didn’t go to the doctor because I’m used to feeling poorly.  It just felt like the world’s worst fibro flare (other than a terrible, never ending headache and some unusually high fevers). I ended up going to the ER for my headache, and the nurse practitioner asked if I had gotten any tick bites lately.  They ran a tick panel, and it came back positive for RMSF.  The are only two antibiotics that can cure the ricksettia bacteria , and I am highly allergic to the best one.  The second antibiotic is given through an IV and can be very dangerous, so I had to be hospitalized for 8 days while I received treatment.  After one day at my local hospital they decided that I needed to be transferred to St. Thomas in Nashville so I could be under the care of an infectious disease doctor.
Continued below ⬇️⬇️⬇️

Hello friends. I’ve had another setback with my health, and it has been a wild six weeks! While hiking at the end of May I was bitten by a tick and contracted Rocky Mountain Spotted Fever. I felt quite ill for weeks, but I didn’t go to the doctor because I’m used to feeling poorly. It just felt like the world’s worst fibro flare (other than a terrible, never ending headache and some unusually high fevers). I ended up going to the ER for my headache, and the nurse practitioner asked if I had gotten any tick bites lately. They ran a tick panel, and it came back positive for RMSF. The are only two antibiotics that can cure the ricksettia bacteria , and I am highly allergic to the best one. The second antibiotic is given through an IV and can be very dangerous, so I had to be hospitalized for 8 days while I received treatment. After one day at my local hospital they decided that I needed to be transferred to St. Thomas in Nashville so I could be under the care of an infectious disease doctor. Continued below ⬇️⬇️⬇️ - 32 minutes ago

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After the rather lengthy (and not exactly over with) episode of idolatry.... I'm thrilled to be posting again. 
I came across a very cool overlay and wanted to share. The distressed photo with a rainbow shining through... Fits my mood exactly.

#ALLsicksucks #chronicallyfierce #butyoudontlooksick #ptsd #anxiety #depression #mentalhealthawareness #crps #gp #fear #alone #pain #ihavegutstheyrejustdefective #spoonie #spooniecommunity #zebra #otb #morphebabe #prettygirl #expensiveskin #tatchabeauty #tattootherapy #dontletanyonedullursparkle #hatingmewontmakeyoupretty #selfienation #smilepretty #photooftheday #amaturephotography #lotd #beatoftheday

After the rather lengthy (and not exactly over with) episode of idolatry.... I'm thrilled to be posting again. I came across a very cool overlay and wanted to share. The distressed photo with a rainbow shining through... Fits my mood exactly. #ALLsicksucks #chronicallyfierce #butyoudontlooksick #ptsd #anxiety #depression #mentalhealthawareness #crps #gp #fear #alone #pain #ihavegutstheyrejustdefective #spoonie #spooniecommunity #zebra #otb #morphebabe #prettygirl #expensiveskin #tatchabeauty #tattootherapy #dontletanyonedullursparkle #hatingmewontmakeyoupretty #selfienation #smilepretty #photooftheday #amaturephotography #lotd #beatoftheday - 33 minutes ago

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(PTW: I'm depressed) Going through a really tough flare up. Worse than usual because I went out of the house two days in a row which I never do. One day I left the house for 2 hours or a little less. The next day I was out of the house for an hour. And just for that - my body creates havoc for me for days. I'm so fatigued I'm sleeping most of the days away. I'm in so much pain that the slight air coming out of the vents sends me into extreme pain. I want to scream and cry because I'm so tired of this being my life but I'm too fatigued to cry. It's hard to see the point in all of this when the times I leave my house for barely any time at all sends me into this hell. If I don't leave sometimes even though I know it will cause me pain I won't have a life. But life just goes by while all I ever can do is lay in bed as the years pass. I'm sick of this.
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#endometriosis #endometriosisawareness #chronicpain #chronicinflammation #butyoudontlooksick #spoonie #spoonielife #endometriosisawarenessmonth #mecfs #chronicfatiguesyndrome #dysautonomia #chronicmigraines #undiagnosed #undiagnosed #lupus #multiplesclerosis #fibromyalgia #pots #fibromyalgiawarrior #dysautonomia #fibromyalgiaawareness #mysteryillness

(PTW: I'm depressed) Going through a really tough flare up. Worse than usual because I went out of the house two days in a row which I never do. One day I left the house for 2 hours or a little less. The next day I was out of the house for an hour. And just for that - my body creates havoc for me for days. I'm so fatigued I'm sleeping most of the days away. I'm in so much pain that the slight air coming out of the vents sends me into extreme pain. I want to scream and cry because I'm so tired of this being my life but I'm too fatigued to cry. It's hard to see the point in all of this when the times I leave my house for barely any time at all sends me into this hell. If I don't leave sometimes even though I know it will cause me pain I won't have a life. But life just goes by while all I ever can do is lay in bed as the years pass. I'm sick of this. - - #endometriosis #endometriosisawareness #chronicpain #chronicinflammation #butyoudontlooksick #spoonie #spoonielife #endometriosisawarenessmonth #mecfs #chronicfatiguesyndrome #dysautonomia #chronicmigraines #undiagnosed #undiagnosed #lupus #multiplesclerosis #fibromyalgia #pots #fibromyalgiawarrior #dysautonomia #fibromyalgiaawareness #mysteryillness - 34 minutes ago

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Happy Monday all!!!! Today mid flare up I went to the grocery store (using a motorized cart) and was slightly sad as I have a million things on my mind. Had mini breakdown this weekend and decided today would be a good day no matter what! Small victories matter and today I meal prepped, put away laundry,  shopped, and danced all on my own sore legs and all! TAKE YOUR VICTORIES WHERE YOU CAN!!! Sometimes the smallest things mean so much!! The energy you put out you get back in some way I promise! #happymonday #blackwomenblog #joinmyjourney #womenshealth #mentalhealthblogger #liveintentionally #inspirehealth #findthebeauty #womenbloggers #melaninmagic  #autoimmuneassasin  #ChronicPainConquer #autoimmunedisease #fibromyalgiawarrior #butyoudontlooksick

Happy Monday all!!!! Today mid flare up I went to the grocery store (using a motorized cart) and was slightly sad as I have a million things on my mind. Had mini breakdown this weekend and decided today would be a good day no matter what! Small victories matter and today I meal prepped, put away laundry, shopped, and danced all on my own sore legs and all! TAKE YOUR VICTORIES WHERE YOU CAN!!! Sometimes the smallest things mean so much!! The energy you put out you get back in some way I promise! #happymonday #blackwomenblog #joinmyjourney #womenshealth #mentalhealthblogger #liveintentionally #inspirehealth #findthebeauty #womenbloggers #melaninmagic #autoimmuneassasin #ChronicPainConquer #autoimmunedisease #fibromyalgiawarrior #butyoudontlooksick - 38 minutes ago

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Happy Monday all!!!! Today mid flare up I went to the grocery store (using a motorized cart) and was slightly sad as I have a million things on my mind. Had mini breakdown this weekend and decided today would be a good day no matter what! Small victories matter and today I meal prepped, put away laundry,  shopped, and danced all on my own sore legs and all! TAKE YOUR VICTORIES WHERE YOU CAN!!! Sometimes the smallest things mean so much!! The energy you put out you get back in some way I promise! #happymonday #blackwomenblog #joinmyjourney #womenshealth #mentalhealthblogger #liveintentionally #inspirehealth #findthebeauty #womenbloggers #melaninmagic  #autoimmuneassasin  #ChronicPainConquer #autoimmunedisease #fibromyalgiawarrior #butyoudontlooksick

Happy Monday all!!!! Today mid flare up I went to the grocery store (using a motorized cart) and was slightly sad as I have a million things on my mind. Had mini breakdown this weekend and decided today would be a good day no matter what! Small victories matter and today I meal prepped, put away laundry, shopped, and danced all on my own sore legs and all! TAKE YOUR VICTORIES WHERE YOU CAN!!! Sometimes the smallest things mean so much!! The energy you put out you get back in some way I promise! #happymonday #blackwomenblog #joinmyjourney #womenshealth #mentalhealthblogger #liveintentionally #inspirehealth #findthebeauty #womenbloggers #melaninmagic #autoimmuneassasin #ChronicPainConquer #autoimmunedisease #fibromyalgiawarrior #butyoudontlooksick - 39 minutes ago

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CLC MEMBER FEATURE (Ariel): I’ve been transitioning for several years. Part of my transition mindset has focused on imagining an idealized version of myself after hormone replacement and after surgery. I’ve fantasized about the clothes I would wear, how long or short I could grow my hair and the feeling of the sun beaming on my bare chest.
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I’ve been debilitated by chronic illness for virtually my whole life. Never once did I imagine my body not disabled or not bearing the marks of my chronic illness. Despite the moniker “invisible illness” being commonly used, when I look in the mirror (and look down at my own body), I see all of the earmarks of my autoimmune disease (most prominently autoimmune thyroid disease) and genetic conditions. I see it in the texture of my skin and in my complexion, in my posture, in the sparseness of hair and permanence of sickly half-moons under my bulging tired eyes.
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Regardless, I never expected that my trans body and my chronically ill body would intersect in this way. (I thought the worst of it would be accepting that I could never grow the beard of my dreams!—thanks, alopecia) While my incision scars have mostly healed, I have permanent scarring from failed areolar grafts. After five years of research and consults with experienced surgeons in my region of the country, not once was I advised that I had a high risk of graft rejection due to having an autoimmune disease. As it turns out, there is fair amount of research out there on the subject—in the case of breast reduction procedures performed on cisgender women and men. Even today, I still have not met other folks who share my intersections and who also share this experience.
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I’m still coming to terms with all the variables to why I have an “imperfect” chest. I’m also still struggling with my self-image on a daily basis. But I know that this is my body, and I know that these visible markers are a humble reminder that my transness and my illness are equally prominent and immutable parts of my overall “me-ness."

CLC MEMBER FEATURE (Ariel): I’ve been transitioning for several years. Part of my transition mindset has focused on imagining an idealized version of myself after hormone replacement and after surgery. I’ve fantasized about the clothes I would wear, how long or short I could grow my hair and the feeling of the sun beaming on my bare chest. • I’ve been debilitated by chronic illness for virtually my whole life. Never once did I imagine my body not disabled or not bearing the marks of my chronic illness. Despite the moniker “invisible illness” being commonly used, when I look in the mirror (and look down at my own body), I see all of the earmarks of my autoimmune disease (most prominently autoimmune thyroid disease) and genetic conditions. I see it in the texture of my skin and in my complexion, in my posture, in the sparseness of hair and permanence of sickly half-moons under my bulging tired eyes. • Regardless, I never expected that my trans body and my chronically ill body would intersect in this way. (I thought the worst of it would be accepting that I could never grow the beard of my dreams!—thanks, alopecia) While my incision scars have mostly healed, I have permanent scarring from failed areolar grafts. After five years of research and consults with experienced surgeons in my region of the country, not once was I advised that I had a high risk of graft rejection due to having an autoimmune disease. As it turns out, there is fair amount of research out there on the subject—in the case of breast reduction procedures performed on cisgender women and men. Even today, I still have not met other folks who share my intersections and who also share this experience. • I’m still coming to terms with all the variables to why I have an “imperfect” chest. I’m also still struggling with my self-image on a daily basis. But I know that this is my body, and I know that these visible markers are a humble reminder that my transness and my illness are equally prominent and immutable parts of my overall “me-ness." - 46 minutes ago

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KT tape wounds. Despite it constantly destroying my skin, I’m so thankful for the life it allows me to live 💙

KT tape wounds. Despite it constantly destroying my skin, I’m so thankful for the life it allows me to live 💙 - 53 minutes ago

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Garden of the Gods #inspiration #tree #green #leaves #wild #wilderness #outdoors #seetheworld #discover #adventure #explore #landscape #beautifuldestinations #mountains #naturephotography #nature #view #hiking #thegreatoutdoors #naturelovers #goexplore #love #cloudscape #hikingfun #rocks #hikingadventures #hikingday #butyoudontlooksick #eds #ehlersdanlossyndrome

Garden of the Gods #inspiration #tree #green #leaves #wild #wilderness #outdoors #seetheworld #discover #adventure #explore #landscape #beautifuldestinations #mountains #naturephotography #nature #view #hiking #thegreatoutdoors #naturelovers #goexplore #love #cloudscape #hikingfun #rocks #hikingadventures #hikingday #butyoudontlooksick #eds #ehlersdanlossyndrome - 1 hour ago

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This is not an "After Work Out" pic. This is me after grocery shopping, putting away the groceries, and drinking gatoraid to help recenter myself. And this walmart did not have acessible carts.

I was going to take a "this is me sick behind the scenes" pic, but realized you cannot see almost anything out of the norm. 
What you can see : 
A mix of paleness and red face
Disoriented eyes with dark circles 
What you don't see : 
The high heart rate
The lightheadedness 
The disorientation from bending over and standing back up
Cold sweat 
The light tremors
The headache
My hamstring in pain 
My feet going numb 
Now, I lay on my back with my feet up the wall as I write this and about to smoke some CBD. Thinking of writing an email to this Walmart about their carts situation but I have never done something like this before. If you have any suggestions, let me know. 
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Esta no es una foto de "Despues De Ejercicio". Esta soy yo después de comprar comida, guardar la comida y beber gatoraid para ayudarme.  Y este walmart no tenía carritos accesibles.  Iba a tomar una foto de "este soy yo detrás de la media social", pero me di cuenta de que no puedes ver casi nada fuera de lo normal.  Lo que puedes ver :
 Una mezcla de palidez y cara roja.
 Ojos desorientados con ojeras.  Lo que no ves:
 La alta frecuencia cardiaca.
 El mareo
 La desorientación cuando agacharse y levantarse de nuevo
 Sudor frío
 Los temblores musculares  El dolor de cabeza
 Mi tendón en dolor
 Mis pies que no puedo sentir  Ahora, me acuesto de espaldas con los pies en la pared mientras escribo esto y a punto de fumar algo de CDB.  Pensando en escribir un correo electrónico a este Walmart sobre la situación de sus carritos, pero nunca antes había hecho algo así.  Si tiene alguna sugerencia, hágamelo saber.

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#spoonie #invisibleillness #chronicallyill #dysautonomia #nervoussystem #butyoudontlooksick #notalldisabilitiesarevisible #disability #accessibility #dontjudgeabookbyitscover

This is not an "After Work Out" pic. This is me after grocery shopping, putting away the groceries, and drinking gatoraid to help recenter myself. And this walmart did not have acessible carts. I was going to take a "this is me sick behind the scenes" pic, but realized you cannot see almost anything out of the norm. What you can see : A mix of paleness and red face Disoriented eyes with dark circles What you don't see : The high heart rate The lightheadedness The disorientation from bending over and standing back up Cold sweat The light tremors The headache My hamstring in pain My feet going numb Now, I lay on my back with my feet up the wall as I write this and about to smoke some CBD. Thinking of writing an email to this Walmart about their carts situation but I have never done something like this before. If you have any suggestions, let me know. ____________ Esta no es una foto de "Despues De Ejercicio". Esta soy yo después de comprar comida, guardar la comida y beber gatoraid para ayudarme. Y este walmart no tenía carritos accesibles. Iba a tomar una foto de "este soy yo detrás de la media social", pero me di cuenta de que no puedes ver casi nada fuera de lo normal. Lo que puedes ver : Una mezcla de palidez y cara roja. Ojos desorientados con ojeras. Lo que no ves: La alta frecuencia cardiaca. El mareo La desorientación cuando agacharse y levantarse de nuevo Sudor frío Los temblores musculares El dolor de cabeza Mi tendón en dolor Mis pies que no puedo sentir Ahora, me acuesto de espaldas con los pies en la pared mientras escribo esto y a punto de fumar algo de CDB. Pensando en escribir un correo electrónico a este Walmart sobre la situación de sus carritos, pero nunca antes había hecho algo así. Si tiene alguna sugerencia, hágamelo saber. _____________ #spoonie #invisibleillness #chronicallyill #dysautonomia #nervoussystem #butyoudontlooksick #notalldisabilitiesarevisible #disability #accessibility #dontjudgeabookbyitscover - 1 hour ago

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I'm not sure how to feel about my "passing privilege".
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9 times out of 10 when I hear about - or when I talk about - invisible disability or invisible illness, it's regarding how difficult it is to be acknowledged or feel validated when people can't visibly see that you're ill or disabled. But that's not what I'm talking about today.
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When I see this photo I know I'm sick: I didn't have the energy to do my makeup; I'm clearly tired; my hair is thinning, dry, and brittle. However, to a stranger none of these things would be obvious cues of disability or illness. So if I happened to get out of the car without my cane or wheelchair, I could "pass" as healthy, or without disability. That's passing privilege - being able to hide an aspect of yourself that may result in discrimination, be it gender, sexual orientation, race, or in this case, disability. I am so lucky to have this privilege, to be able to stand for a few minutes without my cane (on a good day), or stand up from my wheelchair if there aren't accessible washrooms or we need to get through an inaccessible area. I don't want to minimize the reality of my privilege, but I never want people to think this "privilege" negates the larger conversation of invisible illness and disability, and how important it is to not judge someone before you understand their situation. I guess all I really want to say is, there would be no need to discuss invisible illness or passing privilege if we all just stopped assuming someone else's experience. It seems pretty simple to me, but until we can reach that point, I'll keep fighting for less prejudice and more compassion 🌻
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#chronicillness #cfs #chronicfatiguesyndrome #PoTS #pots #orthostatictachycardia #dysautonomia #myalgicencephalomyelitis #ME #spoonie #gastroparesis #migraine #chronicmigraines #choosejoy #tired #grateful  #immunedisorder #selflove #spooniesister #gratitude #hospital #hope #carenotcure #butyoudontlooksick #mobilityaid #babewithamobilityaid #wheelchair #cane #caneuser #wheelchairuser

I'm not sure how to feel about my "passing privilege". . . 9 times out of 10 when I hear about - or when I talk about - invisible disability or invisible illness, it's regarding how difficult it is to be acknowledged or feel validated when people can't visibly see that you're ill or disabled. But that's not what I'm talking about today. . When I see this photo I know I'm sick: I didn't have the energy to do my makeup; I'm clearly tired; my hair is thinning, dry, and brittle. However, to a stranger none of these things would be obvious cues of disability or illness. So if I happened to get out of the car without my cane or wheelchair, I could "pass" as healthy, or without disability. That's passing privilege - being able to hide an aspect of yourself that may result in discrimination, be it gender, sexual orientation, race, or in this case, disability. I am so lucky to have this privilege, to be able to stand for a few minutes without my cane (on a good day), or stand up from my wheelchair if there aren't accessible washrooms or we need to get through an inaccessible area. I don't want to minimize the reality of my privilege, but I never want people to think this "privilege" negates the larger conversation of invisible illness and disability, and how important it is to not judge someone before you understand their situation. I guess all I really want to say is, there would be no need to discuss invisible illness or passing privilege if we all just stopped assuming someone else's experience. It seems pretty simple to me, but until we can reach that point, I'll keep fighting for less prejudice and more compassion 🌻 . . . . . . . . . . . . . #chronicillness #cfs #chronicfatiguesyndrome #PoTS #pots #orthostatictachycardia #dysautonomia #myalgicencephalomyelitis #ME #spoonie #gastroparesis #migraine #chronicmigraines #choosejoy #tired #grateful   #immunedisorder #selflove #spooniesister #gratitude #hospital #hope #carenotcure #butyoudontlooksick #mobilityaid #babewithamobilityaid #wheelchair #cane #caneuser #wheelchairuser - 1 hour ago

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