#mcas

Follow:61.641
@ncdotcom - Your negligence ruined my life. Things were looking up for me, but you all were called more than 2 hours prior to my car accident and never came. March 13, 2018. If you had actually come, I wouldn’t have:
-Totaled my car
-*Shattered* my ankle
-Needed one surgery (placing 4 screws) in an attempt to stabilize the shattered bone
-Had my bone die soon thereafter and begin crumbling inside of me
-Needed a second surgery to take out the dead bone and place a 3D replacement (which would have still kept me from ever participating in high-impact activities again, including running, martial arts, etc.)
-Developed a chronic pain condition called Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) - an extremely debilitating + painful condition that has robbed me of my ability to walk
-Gotten into such a poor physical state that I had to withdraw from school and move back home.
-Etc.
If you all had come *anytime* within the 2+ hours from the Deputy’s phone call to my car accident, that black ice wouldn’t have been there. I would be able to walk, finishing my degree at UNC-Chapel Hill (where I was attending while on a full scholarship), and living a complete life. Now, I spend every day in bed and in tremendous pain... I haven’t walked in nearly 4 months - even prior requiring a post-surgical walking boot and only able to get to get to the bathroom or in/out of an appointment.
My entire life is just passing me by.... If you all had come anytime after you were called, after multiple complaints were made to the Sheriff’s office about that *specific* ramp, everything would be different.
Yes, I blame myself quite a bit for what happened, but that blame is misplaced. I was being safe and doing all that I could do... My car accident, and all that has happened thereafter, is on *you.* I wish there were a way to make it right... But I wouldn’t even know where to begin.

@ncdotcom - Your negligence ruined my life. Things were looking up for me, but you all were called more than 2 hours prior to my car accident and never came. March 13, 2018. If you had actually come, I wouldn’t have: -Totaled my car -*Shattered* my ankle -Needed one surgery (placing 4 screws) in an attempt to stabilize the shattered bone -Had my bone die soon thereafter and begin crumbling inside of me -Needed a second surgery to take out the dead bone and place a 3D replacement (which would have still kept me from ever participating in high-impact activities again, including running, martial arts, etc.) -Developed a chronic pain condition called Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) - an extremely debilitating + painful condition that has robbed me of my ability to walk -Gotten into such a poor physical state that I had to withdraw from school and move back home. -Etc. If you all had come *anytime* within the 2+ hours from the Deputy’s phone call to my car accident, that black ice wouldn’t have been there. I would be able to walk, finishing my degree at UNC-Chapel Hill (where I was attending while on a full scholarship), and living a complete life. Now, I spend every day in bed and in tremendous pain... I haven’t walked in nearly 4 months - even prior requiring a post-surgical walking boot and only able to get to get to the bathroom or in/out of an appointment. My entire life is just passing me by.... If you all had come anytime after you were called, after multiple complaints were made to the Sheriff’s office about that *specific* ramp, everything would be different. Yes, I blame myself quite a bit for what happened, but that blame is misplaced. I was being safe and doing all that I could do... My car accident, and all that has happened thereafter, is on *you.* I wish there were a way to make it right... But I wouldn’t even know where to begin.


1💬Normal

Quick booty workout 🍑
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Easy peasy workout you can do from the floor. Do all exercises back to back on one leg before moving to the other. You can go for reps (anywhere from 5-30) or time (20-60 seconds) for each exercise. The key for all of these exercises is to maintain a tight core and flat back. You do not want to be arching your back or dropping from side to side with every movement
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1. Fire hydrants: On all fours with knee bent, lift your leg out to the side (as if you were a dog peeing on a fire hydrant) then extend it straight back behind you. Come back to the starting position and repeat

2. Straight leg lifts: extend your leg straight behind you, then using your butt muscles, lift your leg as high as you can while keeping your core tight. Tap your toe back on the floor and repeat

3. Hamstring curls: Extend leg straight behind you at hip height then squeezing your hamstring, bend your knee, pulling your heel to your butt. Extend straight again and repeat. The key is to keep squeezing the back of your  leg

4. Glute kicks: Coming down on your forearms, keep your knee bent and use your butt to kick your heel towards the sky as if you were trying to push it through the ceiling. Again, the key is using your glute muscles (squeezing your butt the whole time) and only lifting as high as you can while keeping core engaged and not aching your back
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The last vid shows me doing them all on one leg at a time
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How did you like this quick little booty building set? Do you want more specific body part workouts? If so, let me know below and for what body parts 💃🏼 .
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#lyme #mcas #dysautonomia #ptsd #chronicillness #lupus #spooniewarrior #invisibleillness #fibromyalgia #multiplesclerosis #chronicfatigue #potssyndrome #autoimmunedisease #nasm  #mentalillness #chronicpain  #diabetes #bootyworkchallenge #backpain #parkinsons  #neurologicaldisease #aip #epilepsy #arthritis #cidp #eds #neuroplasticity #movementtherapy #homeworkouts #movementismedicine

Quick booty workout 🍑 . Easy peasy workout you can do from the floor. Do all exercises back to back on one leg before moving to the other. You can go for reps (anywhere from 5-30) or time (20-60 seconds) for each exercise. The key for all of these exercises is to maintain a tight core and flat back. You do not want to be arching your back or dropping from side to side with every movement . 1. Fire hydrants: On all fours with knee bent, lift your leg out to the side (as if you were a dog peeing on a fire hydrant) then extend it straight back behind you. Come back to the starting position and repeat 2. Straight leg lifts: extend your leg straight behind you, then using your butt muscles, lift your leg as high as you can while keeping your core tight. Tap your toe back on the floor and repeat 3. Hamstring curls: Extend leg straight behind you at hip height then squeezing your hamstring, bend your knee, pulling your heel to your butt. Extend straight again and repeat. The key is to keep squeezing the back of your leg 4. Glute kicks: Coming down on your forearms, keep your knee bent and use your butt to kick your heel towards the sky as if you were trying to push it through the ceiling. Again, the key is using your glute muscles (squeezing your butt the whole time) and only lifting as high as you can while keeping core engaged and not aching your back . The last vid shows me doing them all on one leg at a time . How did you like this quick little booty building set? Do you want more specific body part workouts? If so, let me know below and for what body parts 💃🏼 . . . . . #lyme #mcas #dysautonomia #ptsd #chronicillness #lupus #spooniewarrior #invisibleillness #fibromyalgia #multiplesclerosis #chronicfatigue #potssyndrome #autoimmunedisease #nasm #mentalillness #chronicpain #diabetes #bootyworkchallenge #backpain #parkinsons #neurologicaldisease #aip #epilepsy #arthritis #cidp #eds #neuroplasticity #movementtherapy #homeworkouts #movementismedicine


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I have not had an anaphylactic episode since mid-July, but my Mast Cell Activation Disorder continues to act up almost every day. This picture shows an example of the incredibly lurid blotchy flushing that blooms across my face, neck, and chest within a minute or less when a mast cell attack strikes.
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If I'm wearing make-up, the flushing is not quite as obvious, but it's still hard to miss, so when I'm with friends/acquaintances who haven't seen one of my mast cell attacks before, they often get startled! Sometimes I don't feel the prickling/itching/burning in my skin until the flushing is already well underway, so a friend will mouth at me from across the room,

I have not had an anaphylactic episode since mid-July, but my Mast Cell Activation Disorder continues to act up almost every day. This picture shows an example of the incredibly lurid blotchy flushing that blooms across my face, neck, and chest within a minute or less when a mast cell attack strikes. - If I'm wearing make-up, the flushing is not quite as obvious, but it's still hard to miss, so when I'm with friends/acquaintances who haven't seen one of my mast cell attacks before, they often get startled! Sometimes I don't feel the prickling/itching/burning in my skin until the flushing is already well underway, so a friend will mouth at me from across the room, "Are you okay?!" and I'll just give them a puzzled look because I'm not aware (yet) that half my face is the color of cranberries. - The flushing is the least of my concerns during a mast cell attack, though. Even mild attacks make me feel itchy, heavy, uncomfortably warm, and just... SICK. Like that you feeling you get in your body when you're coming down with the flu. After the attack passes, I often experience a wave of fatigue. Whatever I might have been planning to do has to go on hold. If I'm not home already, I call a cab (expensive as hell sometimes, but if I start to have trouble breathing, I don't want to be stuck in a tunnel underground) and I lay down in bed until it becomes possible to do anything else. - - - #mcas #mastcellactivationdisorder #mastcelldisease #mastcelldisorder #mastcells #mastcellattack #flushing #hives #anaphylaxis #chronicillness #itchy #sick #allergies #epipen #chronicpain #eds #pots #survivor #raredisease #zebrastrong


1💬Normal

Check it out... Zebra Packages has opened up applications for care packages for patients with chronic illness! 🙌🏽 You can nominate yourself or someone else to receive one. Way to go @zebrapackages ... you rock! #chronicillnesswarriors #spooniecarepackages #zebrapackages #mastcellactivationdisease #mcas #spoonielove

Check it out... Zebra Packages has opened up applications for care packages for patients with chronic illness! 🙌🏽 You can nominate yourself or someone else to receive one. Way to go @zebrapackages ... you rock! #chronicillnesswarriors #spooniecarepackages #zebrapackages #mastcellactivationdisease #mcas #spoonielove


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8.19.19. Today, I question everything.
I’m in so much pain that I feel like I’m going mad... No matter what I do, I can’t get comfortable. I can’t get it under-control. All I can do is cry + try to get out of my head (so binging nonstop Law & Order SVU).
My doctors not listening to me - not seeming to care whether I spend every day suffering - breaks me at my very core... I look at this swollen, pain-ravaged ankle + wish I could just chop it off already. I can’t take much more...
I keep thinking back to my car accident. I now know how much of a mistake it was to leave my apartment that early morning on March 13, 2018, but hindsight is always 20/20 I guess...
Everything seemed so fine. The roads were clear + I had already driven for miles when everything went *wrong.*
I remember the terror I felt after my car started spinning out of control. The moment I realized I couldn’t stop it.. That I was about to go down the hill, off the side of the highway. I remember bouncing off of the 3 separate trees on my way down. I remember being in shock when dialing 911. I remember smelling smoke + the operator asking me if I could get out of the car. The moment I moved + realized something in my leg was broken, even though I’d never broken a bone before... I remember crying for my mom. Screaming as the firefighters got me out. Apologizing the entire way up the hill to the ambulance, as they carried me on the backboard. I felt badly because I thought I’d upset them by all of the screaming - even though I was in the worst pain of my entire life (my ankle literally crooked). Not calling my mom until so many hours later, after I was discharged from the hospital + going home. I was so ashamed + afraid she’d hate me... Even though the @ncdotcom was called hours earlier about that very ramp. Told to come + salt it but never did. It wasn’t my fault...
I remember a lot of things about that early morning, but now all I feel is regret, shame, & so much pain. Physical pain that makes me wish I could go back in time just to punch myself in the face to keep me from leaving my apartment. I thought it was safe...
But now I have to live with the consequences for the rest of my life.

8.19.19. Today, I question everything. I’m in so much pain that I feel like I’m going mad... No matter what I do, I can’t get comfortable. I can’t get it under-control. All I can do is cry + try to get out of my head (so binging nonstop Law & Order SVU). My doctors not listening to me - not seeming to care whether I spend every day suffering - breaks me at my very core... I look at this swollen, pain-ravaged ankle + wish I could just chop it off already. I can’t take much more... I keep thinking back to my car accident. I now know how much of a mistake it was to leave my apartment that early morning on March 13, 2018, but hindsight is always 20/20 I guess... Everything seemed so fine. The roads were clear + I had already driven for miles when everything went *wrong.* I remember the terror I felt after my car started spinning out of control. The moment I realized I couldn’t stop it.. That I was about to go down the hill, off the side of the highway. I remember bouncing off of the 3 separate trees on my way down. I remember being in shock when dialing 911. I remember smelling smoke + the operator asking me if I could get out of the car. The moment I moved + realized something in my leg was broken, even though I’d never broken a bone before... I remember crying for my mom. Screaming as the firefighters got me out. Apologizing the entire way up the hill to the ambulance, as they carried me on the backboard. I felt badly because I thought I’d upset them by all of the screaming - even though I was in the worst pain of my entire life (my ankle literally crooked). Not calling my mom until so many hours later, after I was discharged from the hospital + going home. I was so ashamed + afraid she’d hate me... Even though the @ncdotcom was called hours earlier about that very ramp. Told to come + salt it but never did. It wasn’t my fault... I remember a lot of things about that early morning, but now all I feel is regret, shame, & so much pain. Physical pain that makes me wish I could go back in time just to punch myself in the face to keep me from leaving my apartment. I thought it was safe... But now I have to live with the consequences for the rest of my life.


3💬Normal

Some days you honestly “just can’t” meet up with friends, go to the store, go to an appt, do laundry, etc...and that is absolutely OKAY! #spoonielife #spoonie #dysautonomia #pots #heds #eds #mcas #gp #gastroparesis #feedingtube #gjtube #fibromyalgia #fibro #raynaudssyndrome #ncs #neurogenicbladder #interstim #mentalhealth #mentalillness #depression #majordepression #anxiety #nevergiveup #livelife #nocure #keeponkeepingon #hope

Some days you honestly “just can’t” meet up with friends, go to the store, go to an appt, do laundry, etc...and that is absolutely OKAY! #spoonielife #spoonie #dysautonomia #pots #heds #eds #mcas #gp #gastroparesis #feedingtube #gjtube #fibromyalgia #fibro #raynaudssyndrome #ncs #neurogenicbladder #interstim #mentalhealth #mentalillness #depression #majordepression #anxiety #nevergiveup #livelife #nocure #keeponkeepingon #hope


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We’ve been sharing other warriors stories to let you know you aren’t alone and to share how others handle chronic illness
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We have a fibro warrior on Wednesdays episode who shares her story and how she is preparing to travel the world with chronic illness •
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We’ve been sharing other warriors stories to let you know you aren’t alone and to share how others handle chronic illness • We have a fibro warrior on Wednesdays episode who shares her story and how she is preparing to travel the world with chronic illness • • •


2💬Normal

If you love history, we encourage you to #visitSD. Here’s one museum perfect for National Aviation Day. 
At the Flying Leatherneck Aviation Museum, you’ll see 31 historical aircrafts from World War II. There’s hundreds of artifacts on aviation and right now, for a limited time, go see the exhibit on the Military Working Dogs. Really interesting!
This family friendly attraction is staffed by volunteers, majority served as military pilots or air crew.  Kids and adults can strap into an ejection seat, put on a helmet and try their luck with an

If you love history, we encourage you to #visitSD. Here’s one museum perfect for National Aviation Day. At the Flying Leatherneck Aviation Museum, you’ll see 31 historical aircrafts from World War II. There’s hundreds of artifacts on aviation and right now, for a limited time, go see the exhibit on the Military Working Dogs. Really interesting! This family friendly attraction is staffed by volunteers, majority served as military pilots or air crew.  Kids and adults can strap into an ejection seat, put on a helmet and try their luck with an "I Spy" activity. (📸 cred: @keithimpalass) . . . #Miramar #mcas #flyingleatherneckaviationmuseum #repost #aviationday #planes #sosandiego #familyfriendly #military #sandiegoliving #sandiego #flyboys #supsandiego #aeroplanelovers #museums #historygeek #hiltongaslamp #sandiegogram


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Come on in and get your next auto detail with us! Book your next appointment online or give us call.

Come on in and get your next auto detail with us! Book your next appointment online or give us call.


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One day. I use all of this medical stuff in one day. I’ve never put it all together at once before, so it was a little overwhelming to look at. This is my daily medical routine/everything I use to keep going. This huge pile includes meds, supplies, devices. The nourishment/hydration I need. Devices to monitor illnesses/symptoms and things needed to provide symptom relief. But I look fine, right? I took a picture smiling, so I’m not sick anymore, right? I went to a concert, so I’m magically better, right? Wrong! 🙅🏼‍♀️
• This is why awareness for invisible/chronic illnesses is SO important. While not all people with illnesses require so much of a medical routine, some do. There is so much involved in some of our lives, and it can be overwhelming and time consuming. In one day or week, we do more of a medical routine than some people have done in their entire life 😏
• Some of you may wonder why us with invisible/chronic illnesses get so upset when people assume we are better or tell us we don’t like sick. Well, I wouldn’t be alive without all this stuff right here; so it’s maddening when people assume. It can trigger ptsd for things such as medical professionals, friends, family, etc not believing us for so many years and being put through the ringer, being told we are crazy and it is in our heads. Saying I look good, thank you I’ll take a compliment any day. But don’t tell me I don’t look sick. Be mindful of the things you say to people who battle illness, and try to just imagine what every day can be like for us. We never get a break. It is exhausting 😴
• I will never stop spreading awareness, for myself and for everyone who fights a battle along side of me 💛 #awarenessiskey

One day. I use all of this medical stuff in one day. I’ve never put it all together at once before, so it was a little overwhelming to look at. This is my daily medical routine/everything I use to keep going. This huge pile includes meds, supplies, devices. The nourishment/hydration I need. Devices to monitor illnesses/symptoms and things needed to provide symptom relief. But I look fine, right? I took a picture smiling, so I’m not sick anymore, right? I went to a concert, so I’m magically better, right? Wrong! 🙅🏼‍♀️ • This is why awareness for invisible/chronic illnesses is SO important. While not all people with illnesses require so much of a medical routine, some do. There is so much involved in some of our lives, and it can be overwhelming and time consuming. In one day or week, we do more of a medical routine than some people have done in their entire life 😏 • Some of you may wonder why us with invisible/chronic illnesses get so upset when people assume we are better or tell us we don’t like sick. Well, I wouldn’t be alive without all this stuff right here; so it’s maddening when people assume. It can trigger ptsd for things such as medical professionals, friends, family, etc not believing us for so many years and being put through the ringer, being told we are crazy and it is in our heads. Saying I look good, thank you I’ll take a compliment any day. But don’t tell me I don’t look sick. Be mindful of the things you say to people who battle illness, and try to just imagine what every day can be like for us. We never get a break. It is exhausting 😴 • I will never stop spreading awareness, for myself and for everyone who fights a battle along side of me 💛 #awarenessiskey


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An unexpected finding in the storage box as we begin to downsize and pack in the hopes of moving soon. 🙏🙏

An unexpected finding in the storage box as we begin to downsize and pack in the hopes of moving soon. 🙏🙏


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We’ve been having a great time the last few days with the @hikeitbaby Summer Challenge. We’ve visited the Arboretum in Ann Arbor yesterday and today was the Botanical Gardens. .
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I keep dropping weight like crazy, I’ve been feeling nauseous for 2-3 weeks now, and with last weeks terrible pain, my doc has been looking into gut infections. Finally today, we have confirmation that I have a colon infection. It’s been really hard to eat, and I’ve been extremely nauseous, but somehow it’s not really effecting the POTS Syndrome too badly and I’m able to do a lot with my kids as long as I don’t eat too much. When I eat I get painful stomach cramps. But, just like everything else we are trucking on. I’m glad to have some confirmation of the pain and nausea I’ve been experiencing. 🙌🏻
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#potssyndrome #mcas #chronicillness #chronicwarrior #potssyndrome #eds #hypermobilespectrumdisorder #mastcellactivationsyndrome #mcas #connectivetissuedisorder #blooddisorder #deltagranulestoragepooldeficiency #fatigue #chronicillness #chronicwarrior #myjourney #medicaljourney #posturalorthostatictachycardiasyndrome #healinghashimotos #applewatch #workout #walks #familywalks #spoonie

We’ve been having a great time the last few days with the @hikeitbaby Summer Challenge. We’ve visited the Arboretum in Ann Arbor yesterday and today was the Botanical Gardens. . . I keep dropping weight like crazy, I’ve been feeling nauseous for 2-3 weeks now, and with last weeks terrible pain, my doc has been looking into gut infections. Finally today, we have confirmation that I have a colon infection. It’s been really hard to eat, and I’ve been extremely nauseous, but somehow it’s not really effecting the POTS Syndrome too badly and I’m able to do a lot with my kids as long as I don’t eat too much. When I eat I get painful stomach cramps. But, just like everything else we are trucking on. I’m glad to have some confirmation of the pain and nausea I’ve been experiencing. 🙌🏻 . . #potssyndrome #mcas #chronicillness #chronicwarrior #potssyndrome #eds #hypermobilespectrumdisorder #mastcellactivationsyndrome #mcas #connectivetissuedisorder #blooddisorder #deltagranulestoragepooldeficiency #fatigue #chronicillness #chronicwarrior #myjourney #medicaljourney #posturalorthostatictachycardiasyndrome #healinghashimotos #applewatch #workout #walks #familywalks #spoonie


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When you work in an open floor plan office and sit between 2 dudes who bathe in cologne. 😐 .
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#multiplechemicalsensitivity #mcs #eds #mcas #pots #chronicillness #mask #supercute #pleasestop #chemicalfreework #killingme

When you work in an open floor plan office and sit between 2 dudes who bathe in cologne. 😐 . . . #multiplechemicalsensitivity #mcs #eds #mcas #pots #chronicillness #mask #supercute #pleasestop #chemicalfreework #killingme


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The truth is I've been struggling. My mind isn't in the best place. I'm becoming tired. My health is doing good. My body is finally in a place that I'm proud of. But my mental health sucks. Everyday is hard. I'm faced with a new battle and a new struggle. But I'm trying my best to stay strong. 
#mentalhealth #heal #health #love #mcas #gastroparesis #crps #eds #depression #anxiety #cptsd #ptsd #loveyourself #itsokaynottobeokay #bodypositive

The truth is I've been struggling. My mind isn't in the best place. I'm becoming tired. My health is doing good. My body is finally in a place that I'm proud of. But my mental health sucks. Everyday is hard. I'm faced with a new battle and a new struggle. But I'm trying my best to stay strong. #mentalhealth #heal #health #love #mcas #gastroparesis #crps #eds #depression #anxiety #cptsd #ptsd #loveyourself #itsokaynottobeokay #bodypositive


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➡️OMG!!! We reached 997 packages. That’s 997 smiles given. 3 away from 1,000 in 13 months. That’s just 1 month over a year. 🙀 can’t believe it. . We will be going over a 1000 in the next day or so. We want to do a fundraiser. Trying to raise $300! Being 3 seems to be our lucky number today!!! This is as big as our one year anniversary. Wowza  will you help us. We have Venmo and PayPal you can use. There is a link in the bio tho those. We may not raise $1 but we wanted to share this big news with you guys. ❤️ please share if you can. .
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#chronicillness #carepackage #carebox #spooniesinneed #spoonies #spooniemail #celebratelife #carepackages #careboxes #donate #givingback #giveback #donations #servicedog #SDiT #POTS #MCAS #EDS #followforfollowback #nonprofit

➡️OMG!!! We reached 997 packages. That’s 997 smiles given. 3 away from 1,000 in 13 months. That’s just 1 month over a year. 🙀 can’t believe it. . We will be going over a 1000 in the next day or so. We want to do a fundraiser. Trying to raise $300! Being 3 seems to be our lucky number today!!! This is as big as our one year anniversary. Wowza will you help us. We have Venmo and PayPal you can use. There is a link in the bio tho those. We may not raise $1 but we wanted to share this big news with you guys. ❤️ please share if you can. . . . #chronicillness #carepackage #carebox #spooniesinneed #spoonies #spooniemail #celebratelife #carepackages #careboxes #donate #givingback #giveback #donations #servicedog #SDiT #POTS #MCAS #EDS #followforfollowback #nonprofit


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Goodness me, have I been out of it. I feel so sluggish, like I’m dragging. Let’s hope this liquid gold can pick me up 🤞🏻 #infusions #treatment #chronicpain #chronicillness #lupus #mcas #vasovagalsyncope #doctorday

Goodness me, have I been out of it. I feel so sluggish, like I’m dragging. Let’s hope this liquid gold can pick me up 🤞🏻 #infusions #treatment #chronicpain #chronicillness #lupus #mcas #vasovagalsyncope #doctorday


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To AHLF, being a #LymeWarrior is more than just a title, it's a way of life. We believe that the only way to properly educate the public about Lyme disease and other tick-borne illnesses is to start a conversation, ask meaningful questions and to share the experiences that have impacted our lives forever.
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What does being a #LymeWarrior mean to you?
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(T-shirt design by @peskys_apparel) .
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#ResearchForAlex #lymeawareness #lymeeducation #ticks #outdoors #optoutside #education #lymewarriors #research #empowerment #explore #strength #strongwomen #makeadifference #mcas

To AHLF, being a #LymeWarrior is more than just a title, it's a way of life. We believe that the only way to properly educate the public about Lyme disease and other tick-borne illnesses is to start a conversation, ask meaningful questions and to share the experiences that have impacted our lives forever. . . What does being a #LymeWarrior mean to you? . . (T-shirt design by @peskys_apparel) . . #ResearchForAlex #lymeawareness #lymeeducation #ticks #outdoors #optoutside #education #lymewarriors #research #empowerment #explore #strength #strongwomen #makeadifference #mcas


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i’ve had a long few weeks full of hope and unfortunate setbacks. i am not one to hold a grudge against a setback or two. we could be backpedaling to find a path we missed along the way or something we left behind. i’m not sure i  buy the whole “everything happens for a reason” ordeal, but maybe our steps mean something. i see a lot of people expressing that they keep taking steps back and can’t seem to reach the next milestone or goal. for me, i like to believe my legs are doing me a favor. trying to show me something i’ve missed, something i neglected to admire or appreciate. when my symptoms ease i appreciate how easy it is to breathe without pain. i appreciate my fingers and their fluid movements. i appreciate my eyes and their consistency. next time you find yourself in a pain free moment, pick your head, neck, arms, hands, legs, feet, anything. recognize the pain that isn’t there and breathe into it. i appreciate those no pain moments and like to think it was somehow for a reason. #chronicillness #potssyndrome #mcas #seizures

i’ve had a long few weeks full of hope and unfortunate setbacks. i am not one to hold a grudge against a setback or two. we could be backpedaling to find a path we missed along the way or something we left behind. i’m not sure i buy the whole “everything happens for a reason” ordeal, but maybe our steps mean something. i see a lot of people expressing that they keep taking steps back and can’t seem to reach the next milestone or goal. for me, i like to believe my legs are doing me a favor. trying to show me something i’ve missed, something i neglected to admire or appreciate. when my symptoms ease i appreciate how easy it is to breathe without pain. i appreciate my fingers and their fluid movements. i appreciate my eyes and their consistency. next time you find yourself in a pain free moment, pick your head, neck, arms, hands, legs, feet, anything. recognize the pain that isn’t there and breathe into it. i appreciate those no pain moments and like to think it was somehow for a reason. #chronicillness #potssyndrome #mcas #seizures


0💬Normal

Discovered my condo’s air return duct was made of wood and contained a gap that pulled the air from below my neighbor’s subfloor. In other words, laundry fumes 🤮☠️🤮☠️🤮 #MCAS #mastcelldisease #scentfree #disability #chronicillness #mcs #mecfs #allergies #asthma #migraine

Discovered my condo’s air return duct was made of wood and contained a gap that pulled the air from below my neighbor’s subfloor. In other words, laundry fumes 🤮☠️🤮☠️🤮 #MCAS #mastcelldisease #scentfree #disability #chronicillness #mcs #mecfs #allergies #asthma #migraine


6💬Normal

Growth is a word close to my heart right now.
•••
With the help of @peoplehopeorg, dear friends, and my wonderful Heavenly Father, I'm seeking growth like never before. Recently, the awe-inspiring @cozy.sloth reminded me some seasons aren't for blooming, but rather growing. Both are precious in unique ways, especially when they're absorbed and utilized as the fresh opportunities they are.
•••
Join me while I seek to bloom into the young woman God created me to be? As I focus on tearing down lies my heart holds onto and rebuilding my true, God-given IDENTITY this month, I encourage you to explore your own.
•••
Remember to be gentle with your body and mind, growing is a process. 🌱💓

Growth is a word close to my heart right now. ••• With the help of @peoplehopeorg, dear friends, and my wonderful Heavenly Father, I'm seeking growth like never before. Recently, the awe-inspiring @cozy.sloth reminded me some seasons aren't for blooming, but rather growing. Both are precious in unique ways, especially when they're absorbed and utilized as the fresh opportunities they are. ••• Join me while I seek to bloom into the young woman God created me to be? As I focus on tearing down lies my heart holds onto and rebuilding my true, God-given IDENTITY this month, I encourage you to explore your own. ••• Remember to be gentle with your body and mind, growing is a process. 🌱💓


20💬Normal

And I get dumb shit like #eds #pots #mcas #nofair

And I get dumb shit like #eds #pots #mcas #nofair


4💬Normal

When you start doing DNRS, keep a journal with every accomplishment, big or small. When things are hard, you can look back at those pages and be reminded of why you’re putting in all this work. Also, there will come a time (sooner than you think!) when you’ll need to be reminded of those victories, because they will have become second nature. I had to remind myself this morning that walking down the hallway at work, which I do every day a zillion times...is a HUGE accomplishment for me! Being able to use a public restroom and still be able to breathe. Being happy at work. Doing physical activity without repercussions. Being in a new car. Booking flights to far away places and knowing that I’ll be completely healthy while on my trip... All of these things are so second nature now...but just a little over a year ago, they were concepts I never even thought possible. So write it down.... 😏 Trust me. 💚

When you start doing DNRS, keep a journal with every accomplishment, big or small. When things are hard, you can look back at those pages and be reminded of why you’re putting in all this work. Also, there will come a time (sooner than you think!) when you’ll need to be reminded of those victories, because they will have become second nature. I had to remind myself this morning that walking down the hallway at work, which I do every day a zillion times...is a HUGE accomplishment for me! Being able to use a public restroom and still be able to breathe. Being happy at work. Doing physical activity without repercussions. Being in a new car. Booking flights to far away places and knowing that I’ll be completely healthy while on my trip... All of these things are so second nature now...but just a little over a year ago, they were concepts I never even thought possible. So write it down.... 😏 Trust me. 💚


10💬Normal

I want to talk about grief and chronic illness.  For me grief is hard.  Not because of the obvious, which is loosing anything is hard rather it’s good or bad for you.  For me grief is hard because it taps into an emotion I’m not good/familiar with, and that is sadness. -
-
Growing up I was taught to never show weakness. This meant being sad was completely off limits.  I was taught to keep fighting no matter what, even if I know I’m going to get my ass beaten to a pulp.  I was taught to hide all of my emotions and to only show happiness and rage.  So for me anything else is well, alien territory and still a learning process at the age of 30. (This also means I’ve had to learn what love is as an adult, but that’s a totally different topic). -
-
When you are chronically ill you tend to feel a plethora of emotions.  You are constantly riding a rollercoaster blindfolded with no seat belt or stop button.  You have no control of how your body will act day to day or even minute to minute. One second you can be ‘okish’ the next second you’re on the ground with a concussion or going into anaphylaxis for no reason.  This life is hard.  It’s enough to make even the strongest people sad and grieve a life of what ifs or past potential. -
-
When you used to be able to fight through symptoms then one day you just can’t anymore it’s really hard.  You begin to grieve your old life.  You tell yourself this is dumb suck it up it’s your life just deal you big fat baby.  Well I’m here to tell you, you are NOT a big fat baby and IT IS OK TO BE SAD and MOURN for your old life and future.  It is important to allow those feelings a place in your life so they don’t take over your life. -
-
I’ve learned recently I really just can’t do much anymore and it hurt bad.  But I bottled it up and allowed it to hurt.  So finally last night I allowed the feelings their place/time.  Now today I can focus on the positive again and settle more into the new disabled version of myself. Which is a fucking badass who is always learning and striving to be the best I can be with in my limits. Rad right? -
-
Remember it’s ok to not be ok and it’s ok to rest.  Have a wonderful day you guys!

I want to talk about grief and chronic illness. For me grief is hard. Not because of the obvious, which is loosing anything is hard rather it’s good or bad for you. For me grief is hard because it taps into an emotion I’m not good/familiar with, and that is sadness. - - Growing up I was taught to never show weakness. This meant being sad was completely off limits. I was taught to keep fighting no matter what, even if I know I’m going to get my ass beaten to a pulp. I was taught to hide all of my emotions and to only show happiness and rage. So for me anything else is well, alien territory and still a learning process at the age of 30. (This also means I’ve had to learn what love is as an adult, but that’s a totally different topic). - - When you are chronically ill you tend to feel a plethora of emotions. You are constantly riding a rollercoaster blindfolded with no seat belt or stop button. You have no control of how your body will act day to day or even minute to minute. One second you can be ‘okish’ the next second you’re on the ground with a concussion or going into anaphylaxis for no reason. This life is hard. It’s enough to make even the strongest people sad and grieve a life of what ifs or past potential. - - When you used to be able to fight through symptoms then one day you just can’t anymore it’s really hard. You begin to grieve your old life. You tell yourself this is dumb suck it up it’s your life just deal you big fat baby. Well I’m here to tell you, you are NOT a big fat baby and IT IS OK TO BE SAD and MOURN for your old life and future. It is important to allow those feelings a place in your life so they don’t take over your life. - - I’ve learned recently I really just can’t do much anymore and it hurt bad. But I bottled it up and allowed it to hurt. So finally last night I allowed the feelings their place/time. Now today I can focus on the positive again and settle more into the new disabled version of myself. Which is a fucking badass who is always learning and striving to be the best I can be with in my limits. Rad right? - - Remember it’s ok to not be ok and it’s ok to rest. Have a wonderful day you guys!


5💬Normal

그리읍니다.. 737MAX...

그리읍니다.. 737MAX...


2💬Normal

Maple coconut dip 🥥 🌴.
Super simple to make it’s barely a recipe at all, and only three ingredients!
Perfect for drizzling over fruit or dunking fruit kabobs into, this will go down well with adults and kids alike.
Link in bio - hope you like it!
.
.
.
#lowhistamine #lowhistamineliving #lowhistaminediet #lowhistaminerecipe #lowhistaminerecipes #lowhistaminekitchen #histamin #histamine #histamineintolerance #histaminediet #histamineintoleranz #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivation #mastcellactivationsyndrome #eeeeeats #eatingforinsta #eatingfortheinsta #tastingtable #thecookfeed #bonappetit #lefooding #wellandgood #williamsonoma #f52grams #dairyfreerecipes #coconutdip

Maple coconut dip 🥥 🌴. Super simple to make it’s barely a recipe at all, and only three ingredients! Perfect for drizzling over fruit or dunking fruit kabobs into, this will go down well with adults and kids alike. Link in bio - hope you like it! . . . #lowhistamine #lowhistamineliving #lowhistaminediet #lowhistaminerecipe #lowhistaminerecipes #lowhistaminekitchen #histamin #histamine #histamineintolerance #histaminediet #histamineintoleranz #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivation #mastcellactivationsyndrome #eeeeeats #eatingforinsta #eatingfortheinsta #tastingtable #thecookfeed #bonappetit #lefooding #wellandgood #williamsonoma #f52grams #dairyfreerecipes #coconutdip


0💬Normal

AMEN. On repeat... “And all I did was praise, All I did was worship...” ❤️ Defender ~ Francesca Battistelli & Steffany Gretzinger 🎶

AMEN. On repeat... “And all I did was praise, All I did was worship...” ❤️ Defender ~ Francesca Battistelli & Steffany Gretzinger 🎶


5💬Normal

Every morning when I look at my social media sites, I am in awe of people doing amazing physical things... Park Runs, High Intensity Workouts, sprints up steps, 10 mile hikes, incredible yoga asanas.... And then somewhere inside my head this little voice starts to tell me I’m not enough. But I so am. You see, we weren’t all blessed with bodies that can do these things - and we shouldn’t be made to feel guilty if those things are not available to us. The starting point is different for each and every one of us, as are our goals and how we work towards them.  #individual #nutrition #nutritionist #healthyfood #thenutritioncounsellor #thenutritioncounsellorinstagram #thenutritioncounsellorspain #zebra #chronicillness #heds #mcas #celiac  #everybodyisdifferent

Every morning when I look at my social media sites, I am in awe of people doing amazing physical things... Park Runs, High Intensity Workouts, sprints up steps, 10 mile hikes, incredible yoga asanas.... And then somewhere inside my head this little voice starts to tell me I’m not enough. But I so am. You see, we weren’t all blessed with bodies that can do these things - and we shouldn’t be made to feel guilty if those things are not available to us. The starting point is different for each and every one of us, as are our goals and how we work towards them. #individual #nutrition #nutritionist #healthyfood #thenutritioncounsellor #thenutritioncounsellorinstagram #thenutritioncounsellorspain #zebra #chronicillness #heds #mcas #celiac #everybodyisdifferent


0💬Normal

🇬🇧⬇️ Aujourd’hui, suite de mes conseils d’organisation pour faire cohabiter études et maladie chronique. Aujourd’hui on parlera rendez-vous médicaux et brain fog.

Je vous conseille de mettre vos rendez vous médicaux le plus possible pendant vos jours où périodes de congés. Même si les cours ca se rattrape, on apprend quand même une bonne partie de la leçon en écoutant le prof parler. Ce serai dommage de manquer toute cette avance sur les révisions. Hélas, ce n’est pas toujours possible. Et si tu ne peux éviter de mettre tes rendez-vous sur tes cours, choisi les cours les moins importants de ton cursus, ou alors ceux dans lesquels tu es le plus à l’aise, comme ça ce sera moins difficile de rattraper sans le prof pour expliquer.
Une autre astuce c’est de mettre tes rendez vous tôt le matin ou en fin de journée. Comme ça tu ne loupe que le premier cours ou le dernier. Tu n’a à compter le temps de trajet qu’une seule fois sur ton temps d’étude. Tandis qu’un rendez-vous en pleine journée te fera perdre le temps du rendez-vous plus le temps de trajet pour t’y rendre et pour revenir sur ton lieu d’étude. 
Et la salle d’attente ?! Plutôt que d’en faire une ennemie, fais en ton allier ! Tu sais que ton médecin sera en retard ? Emmène de quoi t’occuper. Si ta journée a été difficile, prends de quoi te détendre et faire une coupure de tes études pour te focaliser sur ton rendez-vous. Si au contraire tu es en forme, embarque quelques fiches de révisions avec toi. 
Il te faut un certificat pour prouver ta présence à ton rendez-vous ? Demande le dès ton arrivée aux secrétaires. Cela leur laissera le temps de te préparer le papier pendant que tu sera avec le médecin et tu le récupérera en sortant, sans attendre. Et hop, encore de précieuses minutes gagnées sur ton emploi du temps chargé !

A demain pour un dernier post sur l’organisation.

🇬🇧⬇️ Aujourd’hui, suite de mes conseils d’organisation pour faire cohabiter études et maladie chronique. Aujourd’hui on parlera rendez-vous médicaux et brain fog. Je vous conseille de mettre vos rendez vous médicaux le plus possible pendant vos jours où périodes de congés. Même si les cours ca se rattrape, on apprend quand même une bonne partie de la leçon en écoutant le prof parler. Ce serai dommage de manquer toute cette avance sur les révisions. Hélas, ce n’est pas toujours possible. Et si tu ne peux éviter de mettre tes rendez-vous sur tes cours, choisi les cours les moins importants de ton cursus, ou alors ceux dans lesquels tu es le plus à l’aise, comme ça ce sera moins difficile de rattraper sans le prof pour expliquer. Une autre astuce c’est de mettre tes rendez vous tôt le matin ou en fin de journée. Comme ça tu ne loupe que le premier cours ou le dernier. Tu n’a à compter le temps de trajet qu’une seule fois sur ton temps d’étude. Tandis qu’un rendez-vous en pleine journée te fera perdre le temps du rendez-vous plus le temps de trajet pour t’y rendre et pour revenir sur ton lieu d’étude. Et la salle d’attente ?! Plutôt que d’en faire une ennemie, fais en ton allier ! Tu sais que ton médecin sera en retard ? Emmène de quoi t’occuper. Si ta journée a été difficile, prends de quoi te détendre et faire une coupure de tes études pour te focaliser sur ton rendez-vous. Si au contraire tu es en forme, embarque quelques fiches de révisions avec toi. Il te faut un certificat pour prouver ta présence à ton rendez-vous ? Demande le dès ton arrivée aux secrétaires. Cela leur laissera le temps de te préparer le papier pendant que tu sera avec le médecin et tu le récupérera en sortant, sans attendre. Et hop, encore de précieuses minutes gagnées sur ton emploi du temps chargé ! A demain pour un dernier post sur l’organisation.


8💬Normal

Something new in the making. #toftuk #eyf #edsmenagerie #eds #tubiewarrior #heds #pots #mcas

Something new in the making. #toftuk #eyf #edsmenagerie #eds #tubiewarrior #heds #pots #mcas


0💬Normal

I just recently got these forearm crutches. They sat in a box for a week after they came. I still have only used them once despite the pain that I’ve been having in my hip since like 2014. I was diagnosed around 2015 with a labrum tear on my right hip after I had my knee surgery on my right. I have chronic subluxations of that hip as well. I’ve been told by 3 different surgeons I would eventually need surgery on it. I’ve had multiple injections and have capped off at 3 due to my risk factors. I’ve pushed through long enough. -
-
I have pretty intense surgical PTSD from the complications with my knee surgeries that have made me continue to push this surgery for my hips back over and over again. I still push through and work mostly 48 hours a week, night shift, in a busy ER with this. It’s now gotten to the point that I’m having pain and coming home in tears after almost every shift and even sitting I can’t get comfortable anymore. I see the top hip specialist at Duke on Tuesday. Fingers crossed 🤞🏼he can come up with a better plan than surgery. I’ve done it all, PT, injections, acupuncture, taping, bracing, etc. The idea of surgery has made my anxiety go through the roof. -
So, I gave in and got a mobility aid (my first since my knee surgeries) to help with my mobility and pain until we can figure out a plan. I’m struggling with accepting the use of a mobility aid. How did those that use them chose which type and accept being able to use them intermittently (if you do)? -
-
#posturalorthostatictachycardiasyndrome #forearmcrutches #mcas #pots #hyperpots #eds #ehlersdanlossyndrome #hypermobility #lupus #sjogrens #labraltear #hippain #hiparthroscopy #mobilityaids

I just recently got these forearm crutches. They sat in a box for a week after they came. I still have only used them once despite the pain that I’ve been having in my hip since like 2014. I was diagnosed around 2015 with a labrum tear on my right hip after I had my knee surgery on my right. I have chronic subluxations of that hip as well. I’ve been told by 3 different surgeons I would eventually need surgery on it. I’ve had multiple injections and have capped off at 3 due to my risk factors. I’ve pushed through long enough. - - I have pretty intense surgical PTSD from the complications with my knee surgeries that have made me continue to push this surgery for my hips back over and over again. I still push through and work mostly 48 hours a week, night shift, in a busy ER with this. It’s now gotten to the point that I’m having pain and coming home in tears after almost every shift and even sitting I can’t get comfortable anymore. I see the top hip specialist at Duke on Tuesday. Fingers crossed 🤞🏼he can come up with a better plan than surgery. I’ve done it all, PT, injections, acupuncture, taping, bracing, etc. The idea of surgery has made my anxiety go through the roof. - So, I gave in and got a mobility aid (my first since my knee surgeries) to help with my mobility and pain until we can figure out a plan. I’m struggling with accepting the use of a mobility aid. How did those that use them chose which type and accept being able to use them intermittently (if you do)? - - #posturalorthostatictachycardiasyndrome #forearmcrutches #mcas #pots #hyperpots #eds #ehlersdanlossyndrome #hypermobility #lupus #sjogrens #labraltear #hippain #hiparthroscopy #mobilityaids


12💬Normal

This is scary stuff. This is my resting heart rate most of the time. It constantly feels like my chest is going to explode and chronic fast heart rate makes my anxiety so much worse. My heart hit 140 bpm this week and it started to hurt in my chest. Have not officially been diagnosed with POTS but my rheumo thinks that's what this is, along with other neurological and physical symptoms and blood pressure that loves to plummet. THIS REMINDED ME OF A FUNNY STORY THOUGH. Two years ago, I was at science world and they have this drum machine that you put your fingertips on this sensor pad that picks up your pulse and the drum starts beating to your heart. For all my friends, it was completely normal, the drum did the classic normal heart beat, they ran around and then tried it, and the drum beat faster, like it should. Then I tried. Everyone thought the machine was broken because it was erratic, some hard beats, some soft beats, some triple beats in a row, then sometimes stopping, then starting again. Who would have thought that it was actually not broken and that my heart was actually doing that in my chest! -
-
-
#POTS #dysautonomia #scoliosis #endometriosis #spoontheory #spoonielife #chronicillness #chronicdisease #ehlersdanlos #ehlersdanlossyndrome #connectivetissuedisorder #raredisease #EDS #cEDS #mcas #chronicallyill #ibs #zebrastrong #raynauds #bloodpressure #chronicallybeautiful #chronicfatigue #PCOS #bendyisbeautiful #raredisease #edslife #hEDS #illness #geneticdisease #zebradazzle #tachycardia

This is scary stuff. This is my resting heart rate most of the time. It constantly feels like my chest is going to explode and chronic fast heart rate makes my anxiety so much worse. My heart hit 140 bpm this week and it started to hurt in my chest. Have not officially been diagnosed with POTS but my rheumo thinks that's what this is, along with other neurological and physical symptoms and blood pressure that loves to plummet. THIS REMINDED ME OF A FUNNY STORY THOUGH. Two years ago, I was at science world and they have this drum machine that you put your fingertips on this sensor pad that picks up your pulse and the drum starts beating to your heart. For all my friends, it was completely normal, the drum did the classic normal heart beat, they ran around and then tried it, and the drum beat faster, like it should. Then I tried. Everyone thought the machine was broken because it was erratic, some hard beats, some soft beats, some triple beats in a row, then sometimes stopping, then starting again. Who would have thought that it was actually not broken and that my heart was actually doing that in my chest! - - - #POTS #dysautonomia #scoliosis #endometriosis #spoontheory #spoonielife #chronicillness #chronicdisease #ehlersdanlos #ehlersdanlossyndrome #connectivetissuedisorder #raredisease #EDS #cEDS #mcas #chronicallyill #ibs #zebrastrong #raynauds #bloodpressure #chronicallybeautiful #chronicfatigue #PCOS #bendyisbeautiful #raredisease #edslife #hEDS #illness #geneticdisease #zebradazzle #tachycardia


0💬Normal

#初散歩
#錦帯橋デビュー 
#こわくてはなれれない 
#ママが大好き 
1人で行動できなくて、しばらくは飼い主から離れられなかった子w
可愛いすぎ❤️
#ハリネズミ  #heghog

#初散歩 #錦帯橋デビュー #こわくてはなれれない #ママが大好き 1人で行動できなくて、しばらくは飼い主から離れられなかった子w 可愛いすぎ❤️ #ハリネズミ #heghog


3💬Normal

Central venous access (ports, PICC lines, Hickman catheters, etc.) ➡️ live-saving vs. life-threatening? Risks vs. benefits?

Personally, my PICC line is the only way I am able to receive many of my treatments. Home health nursing enables me to receive infusions prescribed by out-of-state doctors, as I cannot travel across states each day to receive treatment. That being said, there is a significant risk involved every time I access, de-access, change dressing, or flush my line.

The initial order by my doctor was for a port- I was never supposed to have a PICC line! Last minute, the anesthesia team decided they were unwilling to place a port under general anesthesia (as ordered) due to my cranial and cervical spine instabilities.

This PICC line has been troublesome for me. The insertion site has never healed due to my EDS skin; the skin around the line continues to tear and bleed after each dressing change. My MCAS hates the constant need for dressing, and I dislike the inability to de-access myself at times.

This line involves daily work, a lot of time, and careful attention- but ultimately, it provides me a level of care I could not receive without it. I get nervous each and every time I deal with my line, worrying that I may have contaminated something despite my utmost attention and care. It is a source of stress, AND a source of comfort. Like many things in chronic illness, two starkly contrasting feelings continually coexist side-by-side. I am slowly learning to accept that truth with each new device, scar, and medical risk taken. 🌙

Central venous access (ports, PICC lines, Hickman catheters, etc.) ➡️ live-saving vs. life-threatening? Risks vs. benefits? Personally, my PICC line is the only way I am able to receive many of my treatments. Home health nursing enables me to receive infusions prescribed by out-of-state doctors, as I cannot travel across states each day to receive treatment. That being said, there is a significant risk involved every time I access, de-access, change dressing, or flush my line. The initial order by my doctor was for a port- I was never supposed to have a PICC line! Last minute, the anesthesia team decided they were unwilling to place a port under general anesthesia (as ordered) due to my cranial and cervical spine instabilities. This PICC line has been troublesome for me. The insertion site has never healed due to my EDS skin; the skin around the line continues to tear and bleed after each dressing change. My MCAS hates the constant need for dressing, and I dislike the inability to de-access myself at times. This line involves daily work, a lot of time, and careful attention- but ultimately, it provides me a level of care I could not receive without it. I get nervous each and every time I deal with my line, worrying that I may have contaminated something despite my utmost attention and care. It is a source of stress, AND a source of comfort. Like many things in chronic illness, two starkly contrasting feelings continually coexist side-by-side. I am slowly learning to accept that truth with each new device, scar, and medical risk taken. 🌙


1💬Normal

So many out there are suffering from so many different things, and they may not know who to ask or where to go to for help. Dealing with any form of illness can leave you feeling overwhelmed and confused,  and learning about your condition from a doctor or a medical book is completely different from talking to someone who has been through it themselves. I believe both are extremely important, and vital to learning how to manage your condition.

I have met so many wonderful, brave, and kind people dealing with all kinds of different battles through this page, and I have learned so much about managing my own condition through their experiences, tips, and encouragement. So I just want to take a minute to say thank you to all of you who share your lives and your struggles so openly for others to learn from, and especially to those of you I have gotten to talk with and get to know over these past few months. You inspire me, and I hope I can do the same for others by continuing to share my experiences as well.💙 #potssyndrome #dysautonomia #invisibleillness #spooniesupport

So many out there are suffering from so many different things, and they may not know who to ask or where to go to for help. Dealing with any form of illness can leave you feeling overwhelmed and confused, and learning about your condition from a doctor or a medical book is completely different from talking to someone who has been through it themselves. I believe both are extremely important, and vital to learning how to manage your condition. I have met so many wonderful, brave, and kind people dealing with all kinds of different battles through this page, and I have learned so much about managing my own condition through their experiences, tips, and encouragement. So I just want to take a minute to say thank you to all of you who share your lives and your struggles so openly for others to learn from, and especially to those of you I have gotten to talk with and get to know over these past few months. You inspire me, and I hope I can do the same for others by continuing to share my experiences as well.💙 #potssyndrome #dysautonomia #invisibleillness #spooniesupport


18💬Normal

THIS 🙌🏼🙌🏼🙌🏼
Be kind to yourself, always!

THIS 🙌🏼🙌🏼🙌🏼 Be kind to yourself, always!


3💬Normal

*Tattoo done by ONA COTS(Guest from 8/26-)
We are available for walk ins today!!
and please be careful in the sun before or after a tattoo session.
If you get sunburn before your appointment we cannot tattoo you and you will have to reschedule.
If you get sunburn after your session and before your tattoo is properly healed it may damage the art as it will not heal properly.
こんにちは :)
本日も通常通り12:00~22:00まで営業しております。
Tattooの施術前、または施術後の日焼けにはご注意下さい。
施術前に日焼けをしてしまうと、施術が出来なくなり、予約日を変更する事になってしまうかも知れません...
施術後、日焼けをすると治りが遅くなり、正しく治らなくなる可能性もあるので、お気を付けくださいね。 〒740-0026
山口県岩国市車町2-8-23
2-8-23 Kuruma-machi,
Iwakuni, Yamaguchi 740-0026

0827-35-6680
zero.iwakuni@hotmail.com
https://www.facebook.com/zerotattoo.iwakuni/
#zerotattooiwakuni #zerotattoo #iwakuni #japan #japanesetattoo #iwakunibase  #tattooiniwakuni #oversealife #japan  #inkaddict #tattooaddiction #刺青 #boobiestattoo #okinawatattoo 
#tattoolover #tattoolife #MCAS #campiwakuni

*Tattoo done by ONA COTS(Guest from 8/26-) We are available for walk ins today!! and please be careful in the sun before or after a tattoo session. If you get sunburn before your appointment we cannot tattoo you and you will have to reschedule. If you get sunburn after your session and before your tattoo is properly healed it may damage the art as it will not heal properly. こんにちは :) 本日も通常通り12:00~22:00まで営業しております。 Tattooの施術前、または施術後の日焼けにはご注意下さい。 施術前に日焼けをしてしまうと、施術が出来なくなり、予約日を変更する事になってしまうかも知れません... 施術後、日焼けをすると治りが遅くなり、正しく治らなくなる可能性もあるので、お気を付けくださいね。 〒740-0026 山口県岩国市車町2-8-23 2-8-23 Kuruma-machi, Iwakuni, Yamaguchi 740-0026 0827-35-6680 zero.iwakuni @hotmail.com https://www.facebook.com/zerotattoo.iwakuni/ #zerotattooiwakuni #zerotattoo #iwakuni #japan #japanesetattoo #iwakunibase #tattooiniwakuni #oversealife #japan #inkaddict #tattooaddiction #刺青 #boobiestattoo #okinawatattoo #tattoolover #tattoolife #MCAS #campiwakuni


0💬Normal

Today wasn’t easy for any of us, and I’m glad it’s almost over. Happy 38th birthday in heaven my friend. Not a day goes by that I don’t think about you or your boys. They are doing so well, and I know wherever you are that you’re one proud mama. You did so much for so many people and even almost a year later, I’m still angry that you were taken from us far too soon. “It’s been a long day without you my friend and I’ll tell you all about it when I see you again.”-Love you forever Laine.💔 #happybirthday #friends #bestfriends #spooniesisters #guardianangel #dysautonomia #pots #eds #mcas #weloveyou #missyouforever #tiliseeyouagain

Today wasn’t easy for any of us, and I’m glad it’s almost over. Happy 38th birthday in heaven my friend. Not a day goes by that I don’t think about you or your boys. They are doing so well, and I know wherever you are that you’re one proud mama. You did so much for so many people and even almost a year later, I’m still angry that you were taken from us far too soon. “It’s been a long day without you my friend and I’ll tell you all about it when I see you again.”-Love you forever Laine.💔 #happybirthday #friends #bestfriends #spooniesisters #guardianangel #dysautonomia #pots #eds #mcas #weloveyou #missyouforever #tiliseeyouagain


1💬Normal

I lamented having to refill my med boxes a few days ago on Twitter, but I never shared the results. I keep a lot of bottles upstairs in our vanity, but I also keep at least one bottle easily accessible of each med/supplement in a big bag that I bought on our trip to New Orleans (because doesn’t taking meds seem like letting the good times roll? 😉) I dread this day, but at least I only have to do it every three weeks now, and with liquid Cell Cept, I can actually close the smaller ones tightly! #lupus #myastheniagravis #aps #factorvleiden #raynauds #hashimotosdisease #mcas #ibs #eoe #neuropathy #migraine #basalcellcarcinoma #actinickeratosis #autoimmunedisease #autoimmuneawareness #chronicillness #chroniclife #goteammarvel #gratitude

I lamented having to refill my med boxes a few days ago on Twitter, but I never shared the results. I keep a lot of bottles upstairs in our vanity, but I also keep at least one bottle easily accessible of each med/supplement in a big bag that I bought on our trip to New Orleans (because doesn’t taking meds seem like letting the good times roll? 😉) I dread this day, but at least I only have to do it every three weeks now, and with liquid Cell Cept, I can actually close the smaller ones tightly! #lupus #myastheniagravis #aps #factorvleiden #raynauds #hashimotosdisease #mcas #ibs #eoe #neuropathy #migraine #basalcellcarcinoma #actinickeratosis #autoimmunedisease #autoimmuneawareness #chronicillness #chroniclife #goteammarvel #gratitude


0💬Normal

long time no see. i’ve been in a blur recently. the lack of activity, responsibilities (such as work or school) and overall low energy has made the days blend. we recently made some progress health wise with abnormal testing. for a typical person abnormal testing would be unfavorable, but for someone like me it’s almost a relief. i’ve been through a lot of testing whether it just be blood testing or scans i’ve done it all. i revisited the idea of an ENT a few months ago and my CT was abnormal showing a dehiscence in my right ear above my superior semicircular canal. moving forward my ENT ordered a VNP and VEMP test. these tests were some of the weirdest i’ve been through. for the VNP, it was found that my eyes move abnormally vertically and horizontally and the dizziness from the test was unlike anything i’ve been through. thankfully, my anxiety was relatively low that day and i had no seizure activity so it was easy to deal with only dizziness. the VEMP test showed abnormalities in my right ear that i can’t fully unravel like thresholds. there was more results from both of the tests, but these two were what i have researched so far. i have shared a little bit about SSCD or superior semicircular canal dehiscence syndrome, but will share more when/if the diagnosis is final. i have an appointment with an ear specialist on the 27th because my ENT thought it was best to find someone more specialized, but i’m very thankful he caught it on the CT. what does this mean? for me, i believe my symptoms that align with this syndrome are dizziness, off balance sensation, fatigue, brain fog (fatigue & fog caused by my brain working hard to process sounds and remain balanced), echoing, and hearing sounds you normally wouldn’t hear. it is interesting to read about, but i still have a lot of other unexplained issues that aren’t necessarily listed as symptoms like ear infections, ear pain, face pressure, headaches etc. it is relatively new and not fully explored so my symptoms could just be part of the unknown. i’ll update as soon as i know more about what’s going to happen. #semicircularcanaldehiscence #sscd #chronicillness #seizures #potssyndrome #mcas #hsd

long time no see. i’ve been in a blur recently. the lack of activity, responsibilities (such as work or school) and overall low energy has made the days blend. we recently made some progress health wise with abnormal testing. for a typical person abnormal testing would be unfavorable, but for someone like me it’s almost a relief. i’ve been through a lot of testing whether it just be blood testing or scans i’ve done it all. i revisited the idea of an ENT a few months ago and my CT was abnormal showing a dehiscence in my right ear above my superior semicircular canal. moving forward my ENT ordered a VNP and VEMP test. these tests were some of the weirdest i’ve been through. for the VNP, it was found that my eyes move abnormally vertically and horizontally and the dizziness from the test was unlike anything i’ve been through. thankfully, my anxiety was relatively low that day and i had no seizure activity so it was easy to deal with only dizziness. the VEMP test showed abnormalities in my right ear that i can’t fully unravel like thresholds. there was more results from both of the tests, but these two were what i have researched so far. i have shared a little bit about SSCD or superior semicircular canal dehiscence syndrome, but will share more when/if the diagnosis is final. i have an appointment with an ear specialist on the 27th because my ENT thought it was best to find someone more specialized, but i’m very thankful he caught it on the CT. what does this mean? for me, i believe my symptoms that align with this syndrome are dizziness, off balance sensation, fatigue, brain fog (fatigue & fog caused by my brain working hard to process sounds and remain balanced), echoing, and hearing sounds you normally wouldn’t hear. it is interesting to read about, but i still have a lot of other unexplained issues that aren’t necessarily listed as symptoms like ear infections, ear pain, face pressure, headaches etc. it is relatively new and not fully explored so my symptoms could just be part of the unknown. i’ll update as soon as i know more about what’s going to happen. #semicircularcanaldehiscence #sscd #chronicillness #seizures #potssyndrome #mcas #hsd


1💬Normal

Sometimes life in general is just not fair, harder than it should and just plain sucks. I have watched my son get sicker and sicker for the past two years, last night I laid with him in his hospital bed and held him as he cried for two hours before he fell asleep. In moments like that when everything seems like unending darkness it is my faith that makes me search for the light. I get asked how I stay positive and my faith is my rock and helps me to find strength I never thought possible. I stay positive because I know he will get better. I know we will get the right group of meds. I wish it would have happened when he first got sick but from what I have read online some people have struggled for years and years only to have doctor's not believe their symptoms. We happen to live a few miles from the hospital that has a specialist for this very rare disease and I don't think this is by chance. I have faith that we are exactly where we need to be even if I can't always understand why in the moment. Taking a few minutes to pray in the great all the way to the rough moments really help to make this mom get through whatever life throws at her! Not matter if your struggle is huge or small, look for the good, the light, and the positives!
#faith #mcas #invisableillness #raredisease #staypositive #masto #icandoallthingsthroughchrist

Sometimes life in general is just not fair, harder than it should and just plain sucks. I have watched my son get sicker and sicker for the past two years, last night I laid with him in his hospital bed and held him as he cried for two hours before he fell asleep. In moments like that when everything seems like unending darkness it is my faith that makes me search for the light. I get asked how I stay positive and my faith is my rock and helps me to find strength I never thought possible. I stay positive because I know he will get better. I know we will get the right group of meds. I wish it would have happened when he first got sick but from what I have read online some people have struggled for years and years only to have doctor's not believe their symptoms. We happen to live a few miles from the hospital that has a specialist for this very rare disease and I don't think this is by chance. I have faith that we are exactly where we need to be even if I can't always understand why in the moment. Taking a few minutes to pray in the great all the way to the rough moments really help to make this mom get through whatever life throws at her! Not matter if your struggle is huge or small, look for the good, the light, and the positives! #faith #mcas #invisableillness #raredisease #staypositive #masto #icandoallthingsthroughchrist


3💬Normal

We are back in town after meeting two new doctors we added to my team in Mississippi this weekend. It was a successful trip, we established care with a new immunologist and endocrinologist who both looked at my chart and said I had a lot going on but they were happy to have me as a patient, and for that I am grateful. —
—

The immunologist is a female who is super smart, willing to research and work with my GI doctor on possibly switching from SubQ to IVIG infusions to help with my GI dismotility. —
—

The new Endo doctor was able to give me a name of what’s going on with my hypoglycemia for the first time ever which is called Nesidioblastosis. Basically my gut hormones damaged my pancreas and messed with the B cells and islets causing it to act up. He is going to call this week after he finishes going over my chart and see what medication recommendations he wants to make. The only “cure” is removing most of the pancreas so I’m hoping we don’t have to do that. —
—

Oh, and since I have had to be on steroids for so long I have developed Cushings which is fun 🙃, so we are hoping the adrenal gland resolves itself once I can get weaned off these meds. Hopefully this will help with all of my swelling (and acne) but we will do further testing when I go back in October. —
—

Luna did GREAT as usual at the appointments. She’s always very concerned and keeps a watch on me the whole time the doctor is checking me. She has been doing so good with her alerting, she alerted “out of her element” for the first time on the trip when we were at lunch, I was so proud of her. I don’t think I’ll ever get over how excited I am by her natural alerts. The fact that a dog can pick up on something like that is - magical. We truly do not deserve dogs. Luna is my rock in all of this and I am grateful for her every day.

We are back in town after meeting two new doctors we added to my team in Mississippi this weekend. It was a successful trip, we established care with a new immunologist and endocrinologist who both looked at my chart and said I had a lot going on but they were happy to have me as a patient, and for that I am grateful. — — The immunologist is a female who is super smart, willing to research and work with my GI doctor on possibly switching from SubQ to IVIG infusions to help with my GI dismotility. — — The new Endo doctor was able to give me a name of what’s going on with my hypoglycemia for the first time ever which is called Nesidioblastosis. Basically my gut hormones damaged my pancreas and messed with the B cells and islets causing it to act up. He is going to call this week after he finishes going over my chart and see what medication recommendations he wants to make. The only “cure” is removing most of the pancreas so I’m hoping we don’t have to do that. — — Oh, and since I have had to be on steroids for so long I have developed Cushings which is fun 🙃, so we are hoping the adrenal gland resolves itself once I can get weaned off these meds. Hopefully this will help with all of my swelling (and acne) but we will do further testing when I go back in October. — — Luna did GREAT as usual at the appointments. She’s always very concerned and keeps a watch on me the whole time the doctor is checking me. She has been doing so good with her alerting, she alerted “out of her element” for the first time on the trip when we were at lunch, I was so proud of her. I don’t think I’ll ever get over how excited I am by her natural alerts. The fact that a dog can pick up on something like that is - magical. We truly do not deserve dogs. Luna is my rock in all of this and I am grateful for her every day.


2💬Normal

We had a GREAT day. Somehow I was able to do a TON of stuff today and manage my symptoms! 😭🙌🏻😱
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We went to church, did naps and lunch, hiked in a local nature area with the kids and took pictures, explored a little downtown, and finished our night off with family ice cream. .
The nausea was limited, the SOB was very occasional, the heart rate was elevated but manageable, the BP was surprisingly good, and I was able to cool myself down as needed! I’m so stoked that we had some kind of glimmer of a normal family evening. Exploring, adventure, years, laughter, all the makings of a good book plugged into one evening. It’s been great folks! .
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I don’t want to be melodramatic and say I needed this evening, but after a rough week, it was a great evening. So refreshing to be present and “normal.” .
Feeling extremely fatigued tonight, but hopeful that this is the beginning of a positive and healing season. .
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#potssyndrome #mcas #chronicillness #chronicwarrior #potssyndrome #eds #hypermobilespectrumdisorder #mastcellactivationsyndrome #mcas #connectivetissuedisorder #blooddisorder #deltagranulestoragepooldeficiency #fatigue #chronicillness #chronicwarrior #myjourney #medicaljourney #posturalorthostatictachycardiasyndrome #healinghashimotos #applewatch #workout #walks #familywalks #thm

We had a GREAT day. Somehow I was able to do a TON of stuff today and manage my symptoms! 😭🙌🏻😱 . . We went to church, did naps and lunch, hiked in a local nature area with the kids and took pictures, explored a little downtown, and finished our night off with family ice cream. . The nausea was limited, the SOB was very occasional, the heart rate was elevated but manageable, the BP was surprisingly good, and I was able to cool myself down as needed! I’m so stoked that we had some kind of glimmer of a normal family evening. Exploring, adventure, years, laughter, all the makings of a good book plugged into one evening. It’s been great folks! . . I don’t want to be melodramatic and say I needed this evening, but after a rough week, it was a great evening. So refreshing to be present and “normal.” . Feeling extremely fatigued tonight, but hopeful that this is the beginning of a positive and healing season. . . #potssyndrome #mcas #chronicillness #chronicwarrior #potssyndrome #eds #hypermobilespectrumdisorder #mastcellactivationsyndrome #mcas #connectivetissuedisorder #blooddisorder #deltagranulestoragepooldeficiency #fatigue #chronicillness #chronicwarrior #myjourney #medicaljourney #posturalorthostatictachycardiasyndrome #healinghashimotos #applewatch #workout #walks #familywalks #thm


1💬Normal

Get new boots today and save $$$ during the MCAS 46th Birthday celebration sale. Get a minimum 10% OFF STOREWIDE using code BIRTHDAY10 at checkout. See these and other great specials at www.mcas.com.au.⁠
⁠
Shop Now!⁠
⁠
#MCAS #MotorcycleAccessoriesSupermarket #BirthdaySpecial #Savings

Get new boots today and save $$$ during the MCAS 46th Birthday celebration sale. Get a minimum 10% OFF STOREWIDE using code BIRTHDAY10 at checkout. See these and other great specials at www.mcas.com.au.⁠ ⁠ Shop Now!⁠ ⁠ #MCAS #MotorcycleAccessoriesSupermarket #BirthdaySpecial #Savings


0💬Normal

Proof there *is* some sort of God-like being out there... & they (of no particular gender, I’m guessing) LOVE ME! Oh, and based on this pic, proof that I need a manicure😉. Seriously tho, @AnniesHomegrown #GlutenFree #Organic rocks! Loving these CRISPY Snack Bars.
💜♥️💙
#ChronicIllness #ChronicPain #spoonie #EhlersDanlos #MCAS #AllergicToEverything #CRPS

Proof there *is* some sort of God-like being out there... & they (of no particular gender, I’m guessing) LOVE ME! Oh, and based on this pic, proof that I need a manicure😉. Seriously tho, @AnniesHomegrown #GlutenFree #Organic rocks! Loving these CRISPY Snack Bars. 💜♥️💙 #ChronicIllness #ChronicPain #spoonie #EhlersDanlos #MCAS #AllergicToEverything #CRPS


0💬Normal

Proof there *is* some sort of God-like being out there... & they (of no particular gender, I’m guessing) LOVE ME! Oh, and based on this pic, proof that I need a manicure😉. Seriously tho, @AnniesHomegrown #GlutenFree #Organic rocks! Loving these CRISPY Snack Bars.
💜♥️💙
#ChronicIllness #ChronicPain #spoonie #EhlersDanlos #MCAS #AllergicToEverything #CRPS

Proof there *is* some sort of God-like being out there... & they (of no particular gender, I’m guessing) LOVE ME! Oh, and based on this pic, proof that I need a manicure😉. Seriously tho, @AnniesHomegrown #GlutenFree #Organic rocks! Loving these CRISPY Snack Bars. 💜♥️💙 #ChronicIllness #ChronicPain #spoonie #EhlersDanlos #MCAS #AllergicToEverything #CRPS


0💬Normal

Proof there *is* some sort of God-like being out there... & they (of no particular gender, I’m guessing) LOVE ME! Oh, and based on this pic, proof that I need a manicure😉. Seriously tho, @AnniesHomegrown #GlutenFree #Organic rocks! Loving these CRISPY Snack Bars.
💜♥️💙
#ChronicIllness #ChronicPain #spoonie #EhlersDanlos #MCAS #AllergicToEverything #CRPS

Proof there *is* some sort of God-like being out there... & they (of no particular gender, I’m guessing) LOVE ME! Oh, and based on this pic, proof that I need a manicure😉. Seriously tho, @AnniesHomegrown #GlutenFree #Organic rocks! Loving these CRISPY Snack Bars. 💜♥️💙 #ChronicIllness #ChronicPain #spoonie #EhlersDanlos #MCAS #AllergicToEverything #CRPS


0💬Normal

In laws came to visit today!!
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#mcas #newriver #fatherinlaw #husband #brothers

In laws came to visit today!! . . . . #mcas #newriver #fatherinlaw #husband #brothers


0💬Normal

Sometimes my boyfriend tells me, “If only you felt as good as you look!” And I take it as a compliment. I’m trying to get up and leave my place I’ve been moving into all weekend and go say hi to some friends at a BBQ and I’m laying on my living room floor with my shoes on trying to get the actual energy to go. I miss people. I’m an extrovert and chronic illness is something that makes going out of the house so much harder. Also it doesn’t help that I’ve had 6 protein bars as my food in the last 2-3 days and that I haven’t had much fresh stuff. And I will be around so much food and probably 2% that I can safely eat. That and my scalp is burning and throat is tight and everything hurts and as I’m writing this my chance of NOT going is greater so I should just get up and walk out the door...... #heds #eds #pcos #pots #mcas #fibromyalgia #posturalorthostatictachycardiasyndrome #ehlersdanlos #gastroparesis #mastcell #mastcellactivationsyndrome #invisibleillness #chronicillness #sunday #sundayfunday #weekend #pain #strength

Sometimes my boyfriend tells me, “If only you felt as good as you look!” And I take it as a compliment. I’m trying to get up and leave my place I’ve been moving into all weekend and go say hi to some friends at a BBQ and I’m laying on my living room floor with my shoes on trying to get the actual energy to go. I miss people. I’m an extrovert and chronic illness is something that makes going out of the house so much harder. Also it doesn’t help that I’ve had 6 protein bars as my food in the last 2-3 days and that I haven’t had much fresh stuff. And I will be around so much food and probably 2% that I can safely eat. That and my scalp is burning and throat is tight and everything hurts and as I’m writing this my chance of NOT going is greater so I should just get up and walk out the door...... #heds #eds #pcos #pots #mcas #fibromyalgia #posturalorthostatictachycardiasyndrome #ehlersdanlos #gastroparesis #mastcell #mastcellactivationsyndrome #invisibleillness #chronicillness #sunday #sundayfunday #weekend #pain #strength


1💬Normal

#CitricAcid is DANGEROUS to the #ChronicallyIll! It’s one of my many #FoodSensitivities. Perhaps it’s an issue for you too... & you just don’t know it yet. Extremely frustrating for well-known brands I use everyday to sell supposedly “organic” products w/this pervasive chemical in them!

Check ALL organic teas, juices & anything containing tomatoes/tomatillos/green chiles & you’ll very likely find *CITRIC ACID* on the ingredient list. If you don’t check, sadly you’re going to buy AND consume this chemical. I have to be very careful to avoid it, even shopping at *healthy* specialty markets.
🔬😷 ☠️
Anything that’s #LabCreated by #FoodChemistry scientists using #BlackMold & #SulphuricAcid, often using #GMO corn, should *never* be allowed in so-called #OrganicProducts! Doesn’t matter if it’s a tiny amount—it’s still a chemical! More Importantly: It’s DANGEROUS to ppl w/ compromised #ImmuneSystem &/or #AutoimmuneDisease!
♿︎☣ ⚕︎
NOTE: The above list of product types is by no means exhaustive. Many organic products contain this chemical, so check labels carefully! And make no mistake... these *are* products sold at @WholeFoods, @Sprouts & @TraderJoes! It’s appalling & wrong. Tho it’s not the stores who are at fault, nor even the companies making these products. I blame the #FDA for allowing this chemical in our organic foods. Shame on them!

Source: EthicalFoods.com & Wikipedia. See the chemical formula on slide 3, courtesy of Wikipedia.

#OrganicFoods #RealFooding #nonGMO #HealthyFoodie #MCAS #AllergicToEverything #AutoimmuneWarrior #spoonie #PleaseShare #DYK #MastCellActivationDisorder #AllergyAwareness #AutoimmuneAwareness #ImmuneSupport #ChronicIllness #ChronicPain #SpoonieSupport #EhlersDanlosSyndrome

#CitricAcid is DANGEROUS to the #ChronicallyIll! It’s one of my many #FoodSensitivities. Perhaps it’s an issue for you too... & you just don’t know it yet. Extremely frustrating for well-known brands I use everyday to sell supposedly “organic” products w/this pervasive chemical in them! Check ALL organic teas, juices & anything containing tomatoes/tomatillos/green chiles & you’ll very likely find *CITRIC ACID* on the ingredient list. If you don’t check, sadly you’re going to buy AND consume this chemical. I have to be very careful to avoid it, even shopping at *healthy* specialty markets. 🔬😷 ☠️ Anything that’s #LabCreated by #FoodChemistry scientists using #BlackMold & #SulphuricAcid, often using #GMO corn, should *never* be allowed in so-called #OrganicProducts! Doesn’t matter if it’s a tiny amount—it’s still a chemical! More Importantly: It’s DANGEROUS to ppl w/ compromised #ImmuneSystem &/or #AutoimmuneDisease! ♿︎☣ ⚕︎ NOTE: The above list of product types is by no means exhaustive. Many organic products contain this chemical, so check labels carefully! And make no mistake... these *are* products sold at @WholeFoods, @Sprouts & @TraderJoes! It’s appalling & wrong. Tho it’s not the stores who are at fault, nor even the companies making these products. I blame the #FDA for allowing this chemical in our organic foods. Shame on them! Source: EthicalFoods.com & Wikipedia. See the chemical formula on slide 3, courtesy of Wikipedia. #OrganicFoods #RealFooding #nonGMO #HealthyFoodie #MCAS #AllergicToEverything #AutoimmuneWarrior #spoonie #PleaseShare #DYK #MastCellActivationDisorder #AllergyAwareness #AutoimmuneAwareness #ImmuneSupport #ChronicIllness #ChronicPain #SpoonieSupport #EhlersDanlosSyndrome


0💬Normal

#spoonthesd is enjoying a lazy day at home while I’m not feeling so hot. Been a lot of doctors appointments lately but not a lot of answers about additional symptoms, which is annoying and frustrating but we keep taking one day at a time. .
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#chronicillness #gastroparesis #gp #dysautonomia #pots #potssyndrome #potsie #ehlersdanlossyndrome #eds #zebra #spoonie #mastcellactivationdisorder #mcas #mcad #warrior #ichoosejoy #choosehope #choosejoy #daybyday #keepswimming #follow #followforfollowback #followforfollow

#spoonthesd is enjoying a lazy day at home while I’m not feeling so hot. Been a lot of doctors appointments lately but not a lot of answers about additional symptoms, which is annoying and frustrating but we keep taking one day at a time. . . . . . . . #chronicillness #gastroparesis #gp #dysautonomia #pots #potssyndrome #potsie #ehlersdanlossyndrome #eds #zebra #spoonie #mastcellactivationdisorder #mcas #mcad #warrior #ichoosejoy #choosehope #choosejoy #daybyday #keepswimming #follow #followforfollowback #followforfollow


0💬Normal

#spoonthesd is enjoying a lazy day at home while I’m not feeling so hot. Been a lot of doctors appointments lately but not a lot of answers about additional symptoms, which is annoying and frustrating but we keep taking one day at a time. .
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#chronicillness #gastroparesis #gp #dysautonomia #pots #potssyndrome #potsie #ehlersdanlossyndrome #eds #zebra #spoonie #mastcellactivationdisorder #mcas #mcad #warrior #ichoosejoy #choosehope #choosejoy #daybyday #keepswimming #follow #followforfollowback #followforfollow

#spoonthesd is enjoying a lazy day at home while I’m not feeling so hot. Been a lot of doctors appointments lately but not a lot of answers about additional symptoms, which is annoying and frustrating but we keep taking one day at a time. . . . . . . . #chronicillness #gastroparesis #gp #dysautonomia #pots #potssyndrome #potsie #ehlersdanlossyndrome #eds #zebra #spoonie #mastcellactivationdisorder #mcas #mcad #warrior #ichoosejoy #choosehope #choosejoy #daybyday #keepswimming #follow #followforfollowback #followforfollow


0💬Normal

#CitricAcid is DANGEROUS to the #ChronicallyIll! It’s one of my many #FoodSensitivities. Perhaps it’s an issue for you too... & you just don’t know it yet. Extremely frustrating for well-known brands I use everyday to sell supposedly “organic” products w/this pervasive chemical in them!

Check ALL organic teas, juices & anything containing tomatoes/tomatillos/green chiles & you’ll very likely find *Citric Acid* on the ingredient list. If you don’t check, sadly you’re going to buy AND consume this chemical. I have to be very careful to avoid it, even shopping at *healthy* specialty markets.
🔬😷 ☠️
Anything that’s #LabCreated by #FoodChemistry scientists using #BlackMold & #SulphuricAcid, often using #GMO corn, should *never* be allowed in so-called #OrganicProducts! Doesn’t matter if it’s a tiny amount—it’s still a chemical! More Importantly: It’s DANGEROUS to ppl w/ compromised #ImmuneSystem &/or #AutoimmuneDisease!
♿︎☣ ⚕︎
NOTE: The above list of product types is by no means exhaustive. Many organic products contain this chemical, so check labels carefully! And make no mistake... these *are* products sold at @WholeFoods, @Sprouts & @TraderJoes! It’s appalling & wrong. Tho it’s not the stores who are at fault, nor even the companies making these products. I blame the #FDA for allowing this chemical in our organic foods. Shame on them!

Source: EthicalFoods.com & Wikipedia. See the chemical formula on slide 3, courtesy of Wikipedia.

#OrganicFoods #JustEatRealFoods #nonGMO #HealthyFoodie #FoodScience #spoonie #MCAS #AllergicToEverything #InstaGood #AutoimmuneWarrior #ZebraStrong #AllergyAwareness #AutoimmuneAwareness #ChronicIllness #ChronicPain #SpoonieSupport #EhlersDanlosSyndrome #DYK #AllergicToEverything

#CitricAcid is DANGEROUS to the #ChronicallyIll! It’s one of my many #FoodSensitivities. Perhaps it’s an issue for you too... & you just don’t know it yet. Extremely frustrating for well-known brands I use everyday to sell supposedly “organic” products w/this pervasive chemical in them! Check ALL organic teas, juices & anything containing tomatoes/tomatillos/green chiles & you’ll very likely find *Citric Acid* on the ingredient list. If you don’t check, sadly you’re going to buy AND consume this chemical. I have to be very careful to avoid it, even shopping at *healthy* specialty markets. 🔬😷 ☠️ Anything that’s #LabCreated by #FoodChemistry scientists using #BlackMold & #SulphuricAcid, often using #GMO corn, should *never* be allowed in so-called #OrganicProducts! Doesn’t matter if it’s a tiny amount—it’s still a chemical! More Importantly: It’s DANGEROUS to ppl w/ compromised #ImmuneSystem &/or #AutoimmuneDisease! ♿︎☣ ⚕︎ NOTE: The above list of product types is by no means exhaustive. Many organic products contain this chemical, so check labels carefully! And make no mistake... these *are* products sold at @WholeFoods, @Sprouts & @TraderJoes! It’s appalling & wrong. Tho it’s not the stores who are at fault, nor even the companies making these products. I blame the #FDA for allowing this chemical in our organic foods. Shame on them! Source: EthicalFoods.com & Wikipedia. See the chemical formula on slide 3, courtesy of Wikipedia. #OrganicFoods #JustEatRealFoods #nonGMO #HealthyFoodie #FoodScience #spoonie #MCAS #AllergicToEverything #InstaGood #AutoimmuneWarrior #ZebraStrong #AllergyAwareness #AutoimmuneAwareness #ChronicIllness #ChronicPain #SpoonieSupport #EhlersDanlosSyndrome #DYK #AllergicToEverything


6💬Normal

I feel strongly about this post. I think there has been a lot of negativity spread recently. Doctors and the system failing us. Trauma. ETC. What I think is more beneficial is to focus on is what we can control and the positive impacts we can make on our own health. Most mornings I wake up very early and feel awful. I give myself five minutes to wallow then get up and start my day. No matter how I feel, I go to walk 1-2 miles. I know some of us are not capable of this because of restrictions, but no matter the pain I’m in I know that this will help increase the synovial fluid in my joints and help the pain a little bit. I know that being less active will only make me weaker, feel worse, alone, and depressed. Find something that you’re comfortable with, that your body can tolerate, and go for it! I also am extremely conscious about what I eat and put in my body. Besides the fact that I have to be because of my MCAS, what you put in your body effects how you feel physically and mentally. If you’re going to eat like shit, you’re going to feel like shit and I can’t feel bad for those who do. It took me a long time to get into this routine of being active and eating healthy even while feeling completely awful. It isn’t easy. It’s hard. But it’s also completely necessary in order for ME to keep functioning and feeling somewhat normal. I think that’s the case for many others. I make a point to meditate once or twice a day in order to give my mind a break. I challenge you to do some self reflection today. See if there are areas where you have become lazy (let’s be real, we all get lazy and it isn’t always because of our chronic illnesses holding us back🤪) and know you can do a little bit more to help yourself feel better. Have a beautiful weekend 🥄🥄🥄#eds #ehlersdanlossyndrome #edsawareness #hEDS #butyoudontlooksick #chronicpainwarrior #chronicillness #nycblogger #mcas #mastcellactivationsyndrome #mcad #mastcellactivationdisorder #spoonie #spoonielife #spoonies #disabilityawareness #invisbleillness #invisibledisability #zebra #zebrawarrior #chronicpain #chronicillnessblogger #chronicmigraines #chronicillnesswarrior #lifestyleblogger #chronicheadaches

I feel strongly about this post. I think there has been a lot of negativity spread recently. Doctors and the system failing us. Trauma. ETC. What I think is more beneficial is to focus on is what we can control and the positive impacts we can make on our own health. Most mornings I wake up very early and feel awful. I give myself five minutes to wallow then get up and start my day. No matter how I feel, I go to walk 1-2 miles. I know some of us are not capable of this because of restrictions, but no matter the pain I’m in I know that this will help increase the synovial fluid in my joints and help the pain a little bit. I know that being less active will only make me weaker, feel worse, alone, and depressed. Find something that you’re comfortable with, that your body can tolerate, and go for it! I also am extremely conscious about what I eat and put in my body. Besides the fact that I have to be because of my MCAS, what you put in your body effects how you feel physically and mentally. If you’re going to eat like shit, you’re going to feel like shit and I can’t feel bad for those who do. It took me a long time to get into this routine of being active and eating healthy even while feeling completely awful. It isn’t easy. It’s hard. But it’s also completely necessary in order for ME to keep functioning and feeling somewhat normal. I think that’s the case for many others. I make a point to meditate once or twice a day in order to give my mind a break. I challenge you to do some self reflection today. See if there are areas where you have become lazy (let’s be real, we all get lazy and it isn’t always because of our chronic illnesses holding us back🤪) and know you can do a little bit more to help yourself feel better. Have a beautiful weekend 🥄🥄🥄 #eds #ehlersdanlossyndrome #edsawareness #hEDS #butyoudontlooksick #chronicpainwarrior #chronicillness #nycblogger #mcas #mastcellactivationsyndrome #mcad #mastcellactivationdisorder #spoonie #spoonielife #spoonies #disabilityawareness #invisbleillness #invisibledisability #zebra #zebrawarrior #chronicpain #chronicillnessblogger #chronicmigraines #chronicillnesswarrior #lifestyleblogger #chronicheadaches


2💬Normal

Can I tell you how long it’s been since I have walked out of a doctor appointment feeling heard, understood and hopeful for the future?! I waited for almost 6 months to see this new neurologist. I was cautiously optimistic. But scared to get my hopes up as my disease is tricky and very hard to treat. Most new doctors just remind me that there is no cure and the severity of my disease should have taken me years ago. 
But, this doctor listened. He asked what my daily struggles were like. He asked what I thought would help, what makes it worse, etc. He and his assistant spent over an hour with me. I’m used to hearing, “come back in 3 months and we will see if anything has changed”. Instead, I left with lab orders, a referral to a TMJ specialist, a new diagnosis (Mast cell activation disorder), a dietician to consult with me on how to manage MCAS, weekly infusions and a treatment plan for MCAS. 
Are you kidding me?!? The doctor asked Thomas if he wanted him to try for better quality of life for me or longevity of life. Immediately, Thomas and I both agreed on quality of life. 
The thought that someone may help me with the day to day struggles brings me so much joy. This disease has progressed so much lately and symptoms have gotten so much worse. 
So today’s appointment brought more hope, peace and joy than words can express. 
Feeling lots of gratitude and grateful our very bad day ended on such an uplifting note. Im so grateful for doctors who listen and the years they spend studying to make others’ lives better.

Can I tell you how long it’s been since I have walked out of a doctor appointment feeling heard, understood and hopeful for the future?! I waited for almost 6 months to see this new neurologist. I was cautiously optimistic. But scared to get my hopes up as my disease is tricky and very hard to treat. Most new doctors just remind me that there is no cure and the severity of my disease should have taken me years ago. But, this doctor listened. He asked what my daily struggles were like. He asked what I thought would help, what makes it worse, etc. He and his assistant spent over an hour with me. I’m used to hearing, “come back in 3 months and we will see if anything has changed”. Instead, I left with lab orders, a referral to a TMJ specialist, a new diagnosis (Mast cell activation disorder), a dietician to consult with me on how to manage MCAS, weekly infusions and a treatment plan for MCAS. Are you kidding me?!? The doctor asked Thomas if he wanted him to try for better quality of life for me or longevity of life. Immediately, Thomas and I both agreed on quality of life. The thought that someone may help me with the day to day struggles brings me so much joy. This disease has progressed so much lately and symptoms have gotten so much worse. So today’s appointment brought more hope, peace and joy than words can express. Feeling lots of gratitude and grateful our very bad day ended on such an uplifting note. Im so grateful for doctors who listen and the years they spend studying to make others’ lives better.


9💬Normal

My CRAZY #EhlersDanlos elbows. When totally straight, they bend (are #hyperextended) approx 20° beyond what my doc called normal “carrying angle.” Been like this since b4 birth. EDS is caused by #genetic defect in #ConnectiveTissue / #Collagen.

Not the BEST pic, but you get the idea. Trying to take pix w/my arms straight out in front of me caused CRPS-related #NervePain #numbness. It’s always something😉! .

Yup, got #EhlersDanlosSyndrome + #CRPS. What next-to-impossible #RareDisease combo do YOU have? Can’t be the *only* person who hit the #ChronicIllness lottery! BTW: Where’s the reg lotto when ya need it?! BTW: Can you tell I’m a lefty?! I am! 🦓

#spoonie #ChronicPain #ChronicallyIll #MCAS #ZebraStrong #SpoonieSupport #EDSwarrior #ZebraGirl

My CRAZY #EhlersDanlos elbows. When totally straight, they bend (are #hyperextended) approx 20° beyond what my doc called normal “carrying angle.” Been like this since b4 birth. EDS is caused by #genetic defect in #ConnectiveTissue / #Collagen. Not the BEST pic, but you get the idea. Trying to take pix w/my arms straight out in front of me caused CRPS-related #NervePain #numbness. It’s always something😉! . Yup, got #EhlersDanlosSyndrome + #CRPS. What next-to-impossible #RareDisease combo do YOU have? Can’t be the *only* person who hit the #ChronicIllness lottery! BTW: Where’s the reg lotto when ya need it?! BTW: Can you tell I’m a lefty?! I am! 🦓 #spoonie #ChronicPain #ChronicallyIll #MCAS #ZebraStrong #SpoonieSupport #EDSwarrior #ZebraGirl


10💬Normal

People do not take allergies fucking seriously!!! I had a work event and had our darling girl planning it email ahead about the meal. Asked for a plain filet with olive oil, potatoes and some mixed vegetables. I got the above. Besides the lack of any side, it had olives and seasonings all over it. I was already starving and had to leave right away. The just reused the same meal they gave everyone else minus sauce on the steak. Disgusted. It’s my own fault in thinking I could eat out for once. Now my face is an itchy mess and my throat is tight and am nauseous. #steak #allergyattack #allergyawareness #anaphylaxis #anaphylaxisawareness #allergy #mcas #mastcellactivationsyndrome #histamineintolerance #histamine #histamineintoleranz #nausea #hives #eatingwithallergies #chronicillness #invisibleillness #mcad #mastcellactivationdisorder #mastcells #zebrastrong #spoonie #spoonielife #allergyproblems #foodallergies #foodallergyawareness #chronicallyill #chronicillnessblogger #chronicpain #disability #youdontlooksick

People do not take allergies fucking seriously!!! I had a work event and had our darling girl planning it email ahead about the meal. Asked for a plain filet with olive oil, potatoes and some mixed vegetables. I got the above. Besides the lack of any side, it had olives and seasonings all over it. I was already starving and had to leave right away. The just reused the same meal they gave everyone else minus sauce on the steak. Disgusted. It’s my own fault in thinking I could eat out for once. Now my face is an itchy mess and my throat is tight and am nauseous. #steak #allergyattack #allergyawareness #anaphylaxis #anaphylaxisawareness #allergy #mcas #mastcellactivationsyndrome #histamineintolerance #histamine #histamineintoleranz #nausea #hives #eatingwithallergies #chronicillness #invisibleillness #mcad #mastcellactivationdisorder #mastcells #zebrastrong #spoonie #spoonielife #allergyproblems #foodallergies #foodallergyawareness #chronicallyill #chronicillnessblogger #chronicpain #disability #youdontlooksick


10💬Normal

Chickpea life 🙌🙌🙌 snacking with mcas is hard but these have @bienasnacks have never caused me a problem. I bring them with me everywhere. Full of fiber and protein❤️ honey roasted is my favorite. link in profile!!! #biena #bienachickpeasnacks #honeyroasted #mcas #lowhistamine #foodie #protein #fiber #healthyliving #spoonie #spoonielife #snacktime #aipdiet #chronicillness #proteinsnacks #fiber #mastcellactivationsyndrome #foodie #healthysnack #spoonielifestyle #lifestyleblogger #healtheats #cleaneating #vegan #vegansnacks #chickpeasnack #roastedchickpeas #plantbaseddiet #glutenfreeeats #nutfreevegan

Chickpea life 🙌🙌🙌 snacking with mcas is hard but these have @bienasnacks have never caused me a problem. I bring them with me everywhere. Full of fiber and protein❤️ honey roasted is my favorite. link in profile!!! #biena #bienachickpeasnacks #honeyroasted #mcas #lowhistamine #foodie #protein #fiber #healthyliving #spoonie #spoonielife #snacktime #aipdiet #chronicillness #proteinsnacks #fiber #mastcellactivationsyndrome #foodie #healthysnack #spoonielifestyle #lifestyleblogger #healtheats #cleaneating #vegan #vegansnacks #chickpeasnack #roastedchickpeas #plantbaseddiet #glutenfreeeats #nutfreevegan


11💬Normal

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