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You know I like to be honest here, and I like to raise awareness of how chronic illness affects our lives as well as our bodies.

Chronic illness comes with many symptoms. But with those symptoms also come things like loneliness, low self esteem, loss of sense of self, and fear. I want to talk about the fear for a minute.

I’ve been flaring the last few days, and even though the increased symptoms are obviously rubbish, the thing that’s got me the most is that it’s scared me.

I’ve tried not to think about it too much, and have managed to keep it to a mild low level - I know worrying isn’t going to help and in fact might make it worse. But it’s still there. I’m only human after all.

This is what happens when you live with a chronic condition. It’s always looming in the corner somewhere. Maybe this is what being haunted feels like.

The last few days have made me realise that my symptoms haven’t felt like this in ages, which is a good thing obviously. But with that realisation, I desperately missed how I felt just a few days ago and I wanted it back.

Living with an illness like ME means that a flare could conceivably last days, weeks, months or years. Any one of those options is realistic, I’m not being dramatic here.

Maybe the last few months have been a nice blip, they weren’t my ‘new normal’ and now I’m back to where I was again.

Or maybe I’m just a bit run down and it’ll go away literally tomorrow.

The thing is, I don’t know for sure. And that’s a heavy weight to carry. To some extent I’m going to carry it forever.

Do you know what it’s like to live with that?

If you know someone in my situation, please don’t tell them not to worry. I’m not worrying just to be dramatic or negative. It’s scary, this thing. It’s scary to feel like your chronic illness has more control over your life than you do.

Anyone would worry about that sometimes, surely?

It doesn’t mean everything is awful. There’s still joy and laughter, there’s just a bit of fear in there too.

That’s allowed I reckon.

You know I like to be honest here, and I like to raise awareness of how chronic illness affects our lives as well as our bodies. Chronic illness comes with many symptoms. But with those symptoms also come things like loneliness, low self esteem, loss of sense of self, and fear. I want to talk about the fear for a minute. I’ve been flaring the last few days, and even though the increased symptoms are obviously rubbish, the thing that’s got me the most is that it’s scared me. I’ve tried not to think about it too much, and have managed to keep it to a mild low level - I know worrying isn’t going to help and in fact might make it worse. But it’s still there. I’m only human after all. This is what happens when you live with a chronic condition. It’s always looming in the corner somewhere. Maybe this is what being haunted feels like. The last few days have made me realise that my symptoms haven’t felt like this in ages, which is a good thing obviously. But with that realisation, I desperately missed how I felt just a few days ago and I wanted it back. Living with an illness like ME means that a flare could conceivably last days, weeks, months or years. Any one of those options is realistic, I’m not being dramatic here. Maybe the last few months have been a nice blip, they weren’t my ‘new normal’ and now I’m back to where I was again. Or maybe I’m just a bit run down and it’ll go away literally tomorrow. The thing is, I don’t know for sure. And that’s a heavy weight to carry. To some extent I’m going to carry it forever. Do you know what it’s like to live with that? If you know someone in my situation, please don’t tell them not to worry. I’m not worrying just to be dramatic or negative. It’s scary, this thing. It’s scary to feel like your chronic illness has more control over your life than you do. Anyone would worry about that sometimes, surely? It doesn’t mean everything is awful. There’s still joy and laughter, there’s just a bit of fear in there too. That’s allowed I reckon.

Big boy turns 6 today 🎉🎉 his present? Wearing the hat all day long 😂 oh and he got fresh treats from the farmers market. Don’t feel too bad for him

Big boy turns 6 today 🎉🎉 his present? Wearing the hat all day long 😂 oh and he got fresh treats from the farmers market. Don’t feel too bad for him

CLC MEMBER FEATURE: My name is Mary O’Connor, 5 years ago, when I was 23 I was surfing in Venice, CA and had what was later diagnosed as a stroke in my spinal cord. I began to lose feeling in my legs when I got out of the water and onto the beach until I couldn’t feel or move anything below my waist. I then spent a month living in the hospital with doctors telling me I might never walk again.
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I am proud & grateful to say that I walk with a cane now. Some days are harder than others & sometimes I use my wheelchair. I feel anxious about where I fit in sometimes. Although that’s a pretty normal, human feeling it becomes very heightened when your body is visibly “different”. Some days I feel I’m not handicapped enough & I’m an imposter. Other days I feel like my body has betrayed me & I get upset that I can’t run or ride a bike.
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Importantly I’ve gotten a new perspective on life and what it means to be balanced. Although my body is more appreciated by me now than ever, I’ve also learned that a healthy mind & spirit are just as important to my wellbeing as my legs. I got to a point where I felt like my whole world revolved around my legs and whether I was “fixed” yet or not. That was overwhelming and discouraging which led me to take a step back and look at the bigger picture.
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My world opened up to an incredible community of people who are perfectly imperfect and brave beyond imagination. The people I have connected with through social media have had strokes, paralysis or a hundred other things and are truly uplifting and help me get through the hard days.
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I started acting and modeling a few years before my stroke so I’ve continued to pursue both in this new body of mine! 
I’m currently in a contest to be a Maxim Cover Girl in 2019! I’m passionate about increasing representation of disabilities in entertainment and media. 
#chronicloveclub

CLC MEMBER FEATURE: My name is Mary O’Connor, 5 years ago, when I was 23 I was surfing in Venice, CA and had what was later diagnosed as a stroke in my spinal cord. I began to lose feeling in my legs when I got out of the water and onto the beach until I couldn’t feel or move anything below my waist. I then spent a month living in the hospital with doctors telling me I might never walk again. • I am proud & grateful to say that I walk with a cane now. Some days are harder than others & sometimes I use my wheelchair. I feel anxious about where I fit in sometimes. Although that’s a pretty normal, human feeling it becomes very heightened when your body is visibly “different”. Some days I feel I’m not handicapped enough & I’m an imposter. Other days I feel like my body has betrayed me & I get upset that I can’t run or ride a bike. • Importantly I’ve gotten a new perspective on life and what it means to be balanced. Although my body is more appreciated by me now than ever, I’ve also learned that a healthy mind & spirit are just as important to my wellbeing as my legs. I got to a point where I felt like my whole world revolved around my legs and whether I was “fixed” yet or not. That was overwhelming and discouraging which led me to take a step back and look at the bigger picture. • My world opened up to an incredible community of people who are perfectly imperfect and brave beyond imagination. The people I have connected with through social media have had strokes, paralysis or a hundred other things and are truly uplifting and help me get through the hard days. • I started acting and modeling a few years before my stroke so I’ve continued to pursue both in this new body of mine! I’m currently in a contest to be a Maxim Cover Girl in 2019! I’m passionate about increasing representation of disabilities in entertainment and media. #chronicloveclub 

we stopped to take our signature team picture but instead i got a migraine alert
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thanks willow for being our pawparazzi & catching this on camera 💜
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what task do you use the most?
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Use code EPICONYX @epic_fido
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#servicedog #tasktrained #dogsofinstagram #servicedogsofinstagram #spoonie #chronicillness #invisibleillness #medicalalertdog #instalike #dogsofinsta #dogtraining #dogstagram #poodle_feature #standardpoodle #poodlepuppy #partipoodle #spoo #fluffy #instadog #silverpoodle #standardpoodleway #poodle #poodlesofinstagram #dogmodel

we stopped to take our signature team picture but instead i got a migraine alert • thanks willow for being our pawparazzi & catching this on camera 💜 • what task do you use the most? • Use code EPICONYX @epic_fido  • #servicedog  #tasktrained  #dogsofinstagram  #servicedogsofinstagram  #spoonie  #chronicillness  #invisibleillness  #medicalalertdog  #instalike  #dogsofinsta  #dogtraining  #dogstagram  #poodle_feature  #standardpoodle  #poodlepuppy  #partipoodle  #spoo  #fluffy  #instadog  #silverpoodle  #standardpoodleway  #poodle  #poodlesofinstagram  #dogmodel 

Our next podcast episode (link in profile) is about how people can be there for a loved one with a chronic illness. Whether it is a coworker, significant other, friend or family member, oftentimes there is a bridge of unknown. Some people don’t know how to act or don’t understand. If you could offer your suggestions in the comments, we might mention it on the next episode.

Our next podcast episode (link in profile) is about how people can be there for a loved one with a chronic illness. Whether it is a coworker, significant other, friend or family member, oftentimes there is a bridge of unknown. Some people don’t know how to act or don’t understand. If you could offer your suggestions in the comments, we might mention it on the next episode.

- “what kind of poodle is that??”
-“uh.. a standard?”
-“that’s a standard?? he’s huge!”
not really but okay.
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Use code EPICONYX @epic_fido
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#servicedog #tasktrained #dogsofinstagram #servicedogsofinstagram #spoonie #chronicillness #invisibleillness #medicalalertdog #instalike #dogsofinsta #dogtraining #dogstagram #poodle_feature #standardpoodle #poodlepuppy #partipoodle #spoo #fluffy #instadog #silverpoodle #standardpoodleway #poodle #poodlesofinstagram #dogmodel

- “what kind of poodle is that??” -“uh.. a standard?” -“that’s a standard?? he’s huge!” not really but okay. • Use code EPICONYX @epic_fido  • #servicedog  #tasktrained  #dogsofinstagram  #servicedogsofinstagram  #spoonie  #chronicillness  #invisibleillness  #medicalalertdog  #instalike  #dogsofinsta  #dogtraining  #dogstagram  #poodle_feature  #standardpoodle  #poodlepuppy  #partipoodle  #spoo  #fluffy  #instadog  #silverpoodle  #standardpoodleway  #poodle  #poodlesofinstagram  #dogmodel 

👦🏻: Took the words right out of my mouth...
✅ Follow us @how.u.feeling for more daily content
✅ Check out our Instagram stories
✅Our DMs are always open. Come introduce yourself to us and if you ever need to chat or vent we are always avail. You are not alone in your fight ❤️

👦🏻: Took the words right out of my mouth... ✅ Follow us @how.u.feeling  for more daily content ✅ Check out our Instagram stories ✅Our DMs are always open. Come introduce yourself to us and if you ever need to chat or vent we are always avail. You are not alone in your fight ❤️

Recent Posts

13 days until our 21 day Iceland content creating adventure!! 🇮🇸 ⁣
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This image was taken in Roatan which still holds a piece of our hearts.  We’ve been there twice and I’m sure we will return.  What makes Roatan so amazing to visit is that it’s both beautiful and sad.  We enjoy connecting with the locals there so much and feel like we make new family members every time we go.  And the lands provide such beautiful photography opportunities. ⁣
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📸: @pureemotionsphotography ⁣⁣⁣
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#sheadventures #solotravel #womenwhoexplore  #thecurvywanderer #Roatan #bopowarrior  #carnivalcruises #carnivalcruise #carnivaldream #roatancruise #saltyair #solofemaletraveler #travelphotography #cruiselife #cruisediary  #paradiseonearth #caribbeanlife  #honduras  #naturephotography #caribbeanbestplacestogo #blacktravelfeed #melaninjourney #queer  #diveristymatters #blackgirlstraveltoo #spoonie #lupuswarrior #bluewater #paradise🌴

13 days until our 21 day Iceland content creating adventure!! 🇮🇸 ⁣ ⁣ This image was taken in Roatan which still holds a piece of our hearts. We’ve been there twice and I’m sure we will return. What makes Roatan so amazing to visit is that it’s both beautiful and sad. We enjoy connecting with the locals there so much and feel like we make new family members every time we go. And the lands provide such beautiful photography opportunities. ⁣ ⁣⁣⁣ 📸: @pureemotionsphotography  ⁣⁣⁣ ⁣⁣⁣⁣ 🌴 🌊 🌊 🌴 ⁣⁣ ⁣⁣⁣ -⁣⁣⁣ ⁣⁣⁣ -⁣⁣⁣ ⁣⁣⁣ ⁣⁣⁣⁣ ⁣⁣⁣⁣ ⁣⁣⁣⁣ #sheadventures  #solotravel  #womenwhoexplore  #thecurvywanderer  #Roatan  #bopowarrior  #carnivalcruises  #carnivalcruise  #carnivaldream  #roatancruise  #saltyair  #solofemaletraveler  #travelphotography  #cruiselife  #cruisediary  #paradiseonearth  #caribbeanlife  #honduras  #naturephotography  #caribbeanbestplacestogo  #blacktravelfeed  #melaninjourney  #queer  #diveristymatters  #blackgirlstraveltoo  #spoonie  #lupuswarrior  #bluewater  #paradise🌴 

13 days until our 21 day Iceland content creating adventure!! 🇮🇸 ⁣
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This image was taken in Roatan which still holds a piece of our hearts.  We’ve been there twice and I’m sure we will return.  What makes Roatan so amazing to visit is that it’s both beautiful and sad.  We enjoy connecting with the locals there so much and feel like we make new family members every time we go.  And the lands provide such beautiful photography opportunities. ⁣
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📸: @pureemotionsphotography ⁣⁣⁣
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🌴 🌊 🌊 🌴 ⁣⁣
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#sheadventures #solotravel #womenwhoexplore  #thecurvywanderer #Roatan #bopowarrior  #carnivalcruises #carnivalcruise #carnivaldream #roatancruise #saltyair #solofemaletraveler #travelphotography #cruiselife #cruisediary  #paradiseonearth #caribbeanlife  #honduras  #naturephotography #caribbeanbestplacestogo #blacktravelfeed #melaninjourney #queer  #diveristymatters #blackgirlstraveltoo #spoonie #lupuswarrior #bluewater #paradise🌴

13 days until our 21 day Iceland content creating adventure!! 🇮🇸 ⁣ ⁣ This image was taken in Roatan which still holds a piece of our hearts. We’ve been there twice and I’m sure we will return. What makes Roatan so amazing to visit is that it’s both beautiful and sad. We enjoy connecting with the locals there so much and feel like we make new family members every time we go. And the lands provide such beautiful photography opportunities. ⁣ ⁣⁣⁣ 📸: @pureemotionsphotography  ⁣⁣⁣ ⁣⁣⁣⁣ 🌴 🌊 🌊 🌴 ⁣⁣ ⁣⁣⁣ -⁣⁣⁣ ⁣⁣⁣ -⁣⁣⁣ ⁣⁣⁣ ⁣⁣⁣⁣ ⁣⁣⁣⁣ ⁣⁣⁣⁣ #sheadventures  #solotravel  #womenwhoexplore  #thecurvywanderer  #Roatan  #bopowarrior  #carnivalcruises  #carnivalcruise  #carnivaldream  #roatancruise  #saltyair  #solofemaletraveler  #travelphotography  #cruiselife  #cruisediary  #paradiseonearth  #caribbeanlife  #honduras  #naturephotography  #caribbeanbestplacestogo  #blacktravelfeed  #melaninjourney  #queer  #diveristymatters  #blackgirlstraveltoo  #spoonie  #lupuswarrior  #bluewater  #paradise🌴 

Month of October sale ! All three products for the low prices of $55. That’s a savings of $20 this sale will end Oct 31st.

Month of October sale ! All three products for the low prices of $55. That’s a savings of $20 this sale will end Oct 31st.

it’s october so do ya know what that means??? HAPPY DISABILITY AWARENESS MONTH!!! in case you haven’t noticed yet i am reilly, i am 22, and i have an invisible disability. yes we exist!! no one would even know this is the case for me unless i told them!! my disability doesn’t have to be visible to be valid!! this is going on my rinsta in hopes of avoiding stigma around my MS, although if you want a more in depth discussion of what multiple sclerosis means to me pls check out @msinaround, my other account solely dedicated to this kind of work.

happy first day of spooky szn, and happy first day of remembering disabilities literally surround you all the time!! let’s stop stigmatizing them!!!!

it’s october so do ya know what that means??? HAPPY DISABILITY AWARENESS MONTH!!! in case you haven’t noticed yet i am reilly, i am 22, and i have an invisible disability. yes we exist!! no one would even know this is the case for me unless i told them!! my disability doesn’t have to be visible to be valid!! this is going on my rinsta in hopes of avoiding stigma around my MS, although if you want a more in depth discussion of what multiple sclerosis means to me pls check out @msinaround , my other account solely dedicated to this kind of work. happy first day of spooky szn, and happy first day of remembering disabilities literally surround you all the time!! let’s stop stigmatizing them!!!!

My current therapist is moving out of the county💔 and I couldn’t stop crying when I first found out. Some were tears of sadness, but most were tears of fear. Fear that amongst the time it takes to find a replacement, I would slip.
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I’ve kinda been conditioned to expect providers/therapists to drop me, so having had a therapist who stuck around for 1.5 years is such a gift! As many of you know, it’s a delicate balance for eating disorder clients to lay between “struggling” or “liability”. Sadly, professionals DO drop clients, and it’s usually at their most vulnerable points. •
I was so nervous today before going in to speak to my case manager. I’ve been down this road several times, and expected what was to come. Even the thought of being “rejected” therapist after therapist, and having to go through that again made me sick to my stomach. It’s unbelievably draining, fighting insurance again and again. SHOCKINGLY, this time it went completely different. My case manager told me that I could pick any therapist I’d like and she will fight for a single case agreement and get it covered by insurance😦 I started crying when she said that - the simple action of trying her best to make this happen meant the world. She told me that I have proved myself this past year, and she will do anything in her power to get me the support I need to continue staying stable outpatient! With this, I would be required to get weight checks, vitals and labs more frequently to send to insurance, but I think it’s worth it!

My current therapist is moving out of the county💔 and I couldn’t stop crying when I first found out. Some were tears of sadness, but most were tears of fear. Fear that amongst the time it takes to find a replacement, I would slip. • I’ve kinda been conditioned to expect providers/therapists to drop me, so having had a therapist who stuck around for 1.5 years is such a gift! As many of you know, it’s a delicate balance for eating disorder clients to lay between “struggling” or “liability”. Sadly, professionals DO drop clients, and it’s usually at their most vulnerable points. • I was so nervous today before going in to speak to my case manager. I’ve been down this road several times, and expected what was to come. Even the thought of being “rejected” therapist after therapist, and having to go through that again made me sick to my stomach. It’s unbelievably draining, fighting insurance again and again. SHOCKINGLY, this time it went completely different. My case manager told me that I could pick any therapist I’d like and she will fight for a single case agreement and get it covered by insurance😦 I started crying when she said that - the simple action of trying her best to make this happen meant the world. She told me that I have proved myself this past year, and she will do anything in her power to get me the support I need to continue staying stable outpatient! With this, I would be required to get weight checks, vitals and labs more frequently to send to insurance, but I think it’s worth it!

My arthritis is definitely affected by the weather. We have a running joke at work that we know when a storm is coming because my arthritis starts throbbing out of nowhere! Anyone else find their arthritis is affected by the weather? #RheumatoidArthritis #RA #RheumatoidWarrior #Spoonie #AutoImmune #ChronicIllness #ChronicPain #ChronicFatigue #InvisableIllness #ArthritisAwareness #AntiTNF #Cimzia #Methotrexate #KeepFighting #LifeWithArthritis

My arthritis is definitely affected by the weather. We have a running joke at work that we know when a storm is coming because my arthritis starts throbbing out of nowhere! Anyone else find their arthritis is affected by the weather? #RheumatoidArthritis  #RA  #RheumatoidWarrior  #Spoonie  #AutoImmune  #ChronicIllness  #ChronicPain  #ChronicFatigue  #InvisableIllness  #ArthritisAwareness  #AntiTNF  #Cimzia  #Methotrexate  #KeepFighting  #LifeWithArthritis 

I've struggled today. If you know me, you know I like to be in control. Of myself, of the situation, of my reactions. And today was HARD. I had a medical procedure done that was supposed to be a snap and improve some pain. It wasn't.
Bright side? I learned a lot today, including how to be better at asking for help. ❤️ #teammcsween #spoonie #butyoudontlooksick #enneagram1

I've struggled today. If you know me, you know I like to be in control. Of myself, of the situation, of my reactions. And today was HARD. I had a medical procedure done that was supposed to be a snap and improve some pain. It wasn't. Bright side? I learned a lot today, including how to be better at asking for help. ❤️ #teammcsween  #spoonie  #butyoudontlooksick  #enneagram1 

When you get sick and it won’t go away, but you still have to function like an adult... What are your hacks for when you are sick and have a suppressed immune system?! •
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#mtx #methotrexate #embrel #actemra #humira #remicade #infusion #iv #shots #rheumatoidarthritis #ra #arthritis #spoonie #invisibleillness #autoimmune #autoimmunedisease #sick #bloodclot #factorvleiden #emergenc #vitaminc #fluids #water #positivevibesonly #dayquil

When you get sick and it won’t go away, but you still have to function like an adult... What are your hacks for when you are sick and have a suppressed immune system?! • • • #mtx  #methotrexate  #embrel  #actemra  #humira  #remicade  #infusion  #iv  #shots  #rheumatoidarthritis  #ra  #arthritis  #spoonie  #invisibleillness  #autoimmune  #autoimmunedisease  #sick  #bloodclot  #factorvleiden  #emergenc  #vitaminc  #fluids  #water  #positivevibesonly  #dayquil 

Had the most amazing time with this family🥰

Had the most amazing time with this family🥰

#dysautonomiaawarenessmonth POTS can make going to the dentist a nightmare. With POTS, your adrenaline system is already not working right, with far too much being released into your system whenever anything for it is triggered. Adding the epinephrine used in dental procedures, an actual shot of adrenaline (I had 3 today 😓), feels absolutely awful for me and puts me into a seriously bad POTS crash. I tried to counter it this time with the beta blocker propranolol, fingers crossed it helps stop me from feeling awful for the next few days, especially since this morning already had me stuck on the floor in a POTS flare. I was offered a shot without epinephrine, but in the past we've always found that the numbing effect isn't effective enough for me without it.  Who else struggles with this? Any tips for helping it? .
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#dysautonomia #dysautonomiaawareness #POTS #spoonie #spoonielife #medical #dentist #chronicallyawesome #chronicpainwarrior #chronicillness #chronicpain

#dysautonomiaawarenessmonth  POTS can make going to the dentist a nightmare. With POTS, your adrenaline system is already not working right, with far too much being released into your system whenever anything for it is triggered. Adding the epinephrine used in dental procedures, an actual shot of adrenaline (I had 3 today 😓), feels absolutely awful for me and puts me into a seriously bad POTS crash. I tried to counter it this time with the beta blocker propranolol, fingers crossed it helps stop me from feeling awful for the next few days, especially since this morning already had me stuck on the floor in a POTS flare. I was offered a shot without epinephrine, but in the past we've always found that the numbing effect isn't effective enough for me without it. Who else struggles with this? Any tips for helping it? . . . . #dysautonomia  #dysautonomiaawareness  #POTS  #spoonie  #spoonielife  #medical  #dentist  #chronicallyawesome  #chronicpainwarrior  #chronicillness  #chronicpain 

What do you see when you look at this picture?
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I see imperfections and insecurities. I know the emotionally draining day had behind this snapshot and I've got to remember that that's what each day is. A snapshot of life.
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Now I don't want to be a Debbie Downer or Moaning Murtle here but some days are easier and some are harder than others. I keep a separate account for the M.E side of my life because I like to use it to remember that journey and to be able to look back at where I was and where I am now, as a positive. Whether that be that I am doing well now and I can see the progress I've made or whether that be viewing a dip in health but seeing that it's happened before and I've gotten through it, so I can do it again. But at the same time I feel I SHOULD keep it separate because who the hell wants to hear about the shit? Instagram along with other social media platforms are highlight reels and to be honest we want people to see us at our best and to be complimented on the positives, rather than feeling we are being judged for the lives we actually live the majority of the time.
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Can't share that, what would people think. That's not a good angle, you can see some fat and cellulite (god forbid any rolls or NATURAL bumbs are apparent!) and realistically it's hard and pretty much impossible to keep up. But why is there the needed feeling to be so bloody perfect?
Why is it that I can be so positive, uplifting and supportive of others, yet allow myself to talk and think negatively about myself?
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I've recently been listening to podcasts, reading self development books and writing down all the things I HAVE achieved that day rather than those which I haven't and I've been enjoying it and feeling more positive. Yet today I broke down because I've kept so strong for so long and there comes a point where you're just gonna crack and I need to remind myself that that is okay. . 
Here I am, imperfect, trying my best and it being a roller-coaster. I'm human, we all are and it's time to recognise that.

What do you see when you look at this picture? . I see imperfections and insecurities. I know the emotionally draining day had behind this snapshot and I've got to remember that that's what each day is. A snapshot of life. . Now I don't want to be a Debbie Downer or Moaning Murtle here but some days are easier and some are harder than others. I keep a separate account for the M.E side of my life because I like to use it to remember that journey and to be able to look back at where I was and where I am now, as a positive. Whether that be that I am doing well now and I can see the progress I've made or whether that be viewing a dip in health but seeing that it's happened before and I've gotten through it, so I can do it again. But at the same time I feel I SHOULD keep it separate because who the hell wants to hear about the shit? Instagram along with other social media platforms are highlight reels and to be honest we want people to see us at our best and to be complimented on the positives, rather than feeling we are being judged for the lives we actually live the majority of the time. . Can't share that, what would people think. That's not a good angle, you can see some fat and cellulite (god forbid any rolls or NATURAL bumbs are apparent!) and realistically it's hard and pretty much impossible to keep up. But why is there the needed feeling to be so bloody perfect? Why is it that I can be so positive, uplifting and supportive of others, yet allow myself to talk and think negatively about myself? . I've recently been listening to podcasts, reading self development books and writing down all the things I HAVE achieved that day rather than those which I haven't and I've been enjoying it and feeling more positive. Yet today I broke down because I've kept so strong for so long and there comes a point where you're just gonna crack and I need to remind myself that that is okay. . Here I am, imperfect, trying my best and it being a roller-coaster. I'm human, we all are and it's time to recognise that.

Today is the first day of Dysautonomia Awareness Month so I figured I’d post an update. The past month or so I have been improving more than I ever have since I’ve been sick. This week will be a year since my second surgery on my mouth due to my wisdom teeth being removed and then infected. I just went for another check up and learned that the holes in my mouth are FINALLY starting to almost be closed, but he thinks it will be another 3 months or so of healing. This is something that should have happened half a year ago. But, since I am finally showing signs of healing I think that is why I’m finally starting to show some improvements with my POTS. For the past 11 months I haven’t been consistently able to function to be walking around and doing a whole lot for more than a couple days straight. I needed way more rest than anything and it took me a long time to recover from doing simple tasks and things I wanted to enjoy. This month is the first month I have consistently been able to exercise 5 days a week and do more activities on top of that. I have still been incredibly symptomatic on and off but I have been able to push through it and function better. I am still waiting to see a rheumatologist to figure out my inflammation because while the gut problems are still an issue, they are not the main cause like I thought/was hoping. 
The beginning of the last month was incredibly difficult because I had to make the tough choice to miss my cousin’s wedding in Colorado since there were too many health risks involved. As much as I hate to say it I think that decision gave my body the rest it needed to start fighting this again. I am so thankful every day for my family and friends who continue to support me through all the ups and downs. I don’t know how I would have gotten through this year without all the help. So to lighten this up a bit here are some pictures of things I’ve been able to do this month, even if I was still symptomatic doing them. James and I celebrated 6 years together(!), he pushed me around at Riot Fest to see Blink, we saw the Cubs Miracle musical, had our first party in over a year to celebrate his birthday early, and (continued in comments)

Today is the first day of Dysautonomia Awareness Month so I figured I’d post an update. The past month or so I have been improving more than I ever have since I’ve been sick. This week will be a year since my second surgery on my mouth due to my wisdom teeth being removed and then infected. I just went for another check up and learned that the holes in my mouth are FINALLY starting to almost be closed, but he thinks it will be another 3 months or so of healing. This is something that should have happened half a year ago. But, since I am finally showing signs of healing I think that is why I’m finally starting to show some improvements with my POTS. For the past 11 months I haven’t been consistently able to function to be walking around and doing a whole lot for more than a couple days straight. I needed way more rest than anything and it took me a long time to recover from doing simple tasks and things I wanted to enjoy. This month is the first month I have consistently been able to exercise 5 days a week and do more activities on top of that. I have still been incredibly symptomatic on and off but I have been able to push through it and function better. I am still waiting to see a rheumatologist to figure out my inflammation because while the gut problems are still an issue, they are not the main cause like I thought/was hoping. The beginning of the last month was incredibly difficult because I had to make the tough choice to miss my cousin’s wedding in Colorado since there were too many health risks involved. As much as I hate to say it I think that decision gave my body the rest it needed to start fighting this again. I am so thankful every day for my family and friends who continue to support me through all the ups and downs. I don’t know how I would have gotten through this year without all the help. So to lighten this up a bit here are some pictures of things I’ve been able to do this month, even if I was still symptomatic doing them. James and I celebrated 6 years together(!), he pushed me around at Riot Fest to see Blink, we saw the Cubs Miracle musical, had our first party in over a year to celebrate his birthday early, and (continued in comments)

And just when you thought one of me was a struggle 👻🦇🖤
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 #tattedgirls #girlswithtattoos #smokeyeye #motd #mymotd #glammakeup #fibrowarrior #cfswarrior #spoonie #glam #disabledandcute #work

And just when you thought one of me was a struggle 👻🦇🖤 . . . #tattedgirls  #girlswithtattoos  #smokeyeye  #motd  #mymotd  #glammakeup  #fibrowarrior  #cfswarrior  #spoonie  #glam  #disabledandcute  #work 

With all due respect, can I just hit mute on myself

With all due respect, can I just hit mute on myself

Today I did a very simple look using @elfcosmetics #jellypop #eyegloss and some @kissproducts #lashes. I love how quick and simple it is to get such a glowing look using this gloss! I was worried I wouldn’t like the texture but honestly I don’t feel it once it’s on. #beauty #spoonie #autoimmune #spooniebeauty #over40 #selfcare #skincare #makeup #spoonieskincare #spooniemakeup #sensitiveskin #kbeauty #jbeauty #chronicillness #chronicillnessbeauty #spooniebeautyguru #eyeshadow #lashes

Today I did a very simple look using @elfcosmetics  #jellypop  #eyegloss  and some @kissproducts  #lashes . I love how quick and simple it is to get such a glowing look using this gloss! I was worried I wouldn’t like the texture but honestly I don’t feel it once it’s on. #beauty  #spoonie  #autoimmune  #spooniebeauty  #over40  #selfcare  #skincare  #makeup  #spoonieskincare  #spooniemakeup  #sensitiveskin  #kbeauty  #jbeauty  #chronicillness  #chronicillnessbeauty  #spooniebeautyguru  #eyeshadow  #lashes 

it’s easy to feel like a burden - for needing “special” food, for needing to plan so far ahead, for needing extra downtime, for needing to cancel plans ⁣
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but know that if someone treats you like a burden that is THEIR issue and it simply shows more about their inability to be sympathetic and understanding than anything else 🙅🏼‍♀️⁣
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if your chronic illness is treated like an inconvenience by someone else, there is one word you need to tell them - BUHBYE ⁣
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because you don’t need that negativity in your life, okay? because YOU. ARE. NOT. A. BURDEN (and yes I AM yelling that) ✌🏻 Xx

it’s easy to feel like a burden - for needing “special” food, for needing to plan so far ahead, for needing extra downtime, for needing to cancel plans ⁣ ⁣ but know that if someone treats you like a burden that is THEIR issue and it simply shows more about their inability to be sympathetic and understanding than anything else 🙅🏼‍♀️⁣ ⁣ if your chronic illness is treated like an inconvenience by someone else, there is one word you need to tell them - BUHBYE ⁣ ⁣ because you don’t need that negativity in your life, okay? because YOU. ARE. NOT. A. BURDEN (and yes I AM yelling that) ✌🏻 Xx

It was last year, during my 100 Day Project, that I decided to offer my original Bright Spots for sale and donate $10 from each purchase to the Canadian Mental Health Association - PEI Division. In the end, I was able to make a $100 donation to the organization 😊
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I think that it was around April of this year when I decided to start up my fundraiser again. It’s a cause that means a lot to me considering my own personal journey with depression. This time, I set a lofty goal of $500 for this year.
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Before this past weekend’s Etsy market, I was $130 of the way towards my goal. I’m totally blown away by your support of my work, and by extension my fundraiser!! 18 of my original Bright Spots have since found new homes and I’m so very grateful to report that I’m now $320 of the way towards my $500 goal!! (one lovely human made an extra donation ❤️)
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So today I’d like to send a huge, heartfelt thanks to all those who picked up an original Bright Spot and supported my fundraising effort.
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For those who’d like to see what original Bright Spots remain, I’ve created a story highlight called ‘Originals’ that shows the majority of those that are left, along with their size and price. If you’d like to purchase any of them, please DM me and I’ll look after you ❤️
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Do you think we can hit $500 by Christmas?? Wouldn’t that be amazing 🙌🏻🙌🏻
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#brightspotpapier #brightspotbytania #originalart #peicalligrapher #mentalhealthmatters #mentalhealthawareness #thankyou #gratitude #eastcoastart #eastcoastartist #grateful #heartfeltthanks #petitejoys #thehappynow #womenwhodraw #peiartist @cmha_pei @etsyteampei @etsyca #truepei #noisepei #strengthinletters #powertothepen #handmade #madebyhand #sharinghandmadejoy #customcalligraphy #maritimemakers #madeinthemaritimes #spoonie #arttherapy #100daysofbrightspots

It was last year, during my 100 Day Project, that I decided to offer my original Bright Spots for sale and donate $10 from each purchase to the Canadian Mental Health Association - PEI Division. In the end, I was able to make a $100 donation to the organization 😊 . I think that it was around April of this year when I decided to start up my fundraiser again. It’s a cause that means a lot to me considering my own personal journey with depression. This time, I set a lofty goal of $500 for this year. . Before this past weekend’s Etsy market, I was $130 of the way towards my goal. I’m totally blown away by your support of my work, and by extension my fundraiser!! 18 of my original Bright Spots have since found new homes and I’m so very grateful to report that I’m now $320 of the way towards my $500 goal!! (one lovely human made an extra donation ❤️) . So today I’d like to send a huge, heartfelt thanks to all those who picked up an original Bright Spot and supported my fundraising effort. . For those who’d like to see what original Bright Spots remain, I’ve created a story highlight called ‘Originals’ that shows the majority of those that are left, along with their size and price. If you’d like to purchase any of them, please DM me and I’ll look after you ❤️ . Do you think we can hit $500 by Christmas?? Wouldn’t that be amazing 🙌🏻🙌🏻 . . . . . . . . . #brightspotpapier  #brightspotbytania  #originalart  #peicalligrapher  #mentalhealthmatters  #mentalhealthawareness  #thankyou  #gratitude  #eastcoastart  #eastcoastartist  #grateful  #heartfeltthanks  #petitejoys  #thehappynow  #womenwhodraw  #peiartist  @cmha_pei  @etsyteampei  @etsyca  #truepei  #noisepei  #strengthinletters  #powertothepen  #handmade  #madebyhand  #sharinghandmadejoy  #customcalligraphy  #maritimemakers  #madeinthemaritimes  #spoonie  #arttherapy  #100daysofbrightspots 

It’s raining free and new products this month!!
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🍊 Free product of the month is Clementine which you can’t buy
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😲 Place a 125+pv LRP order before the 15th and get it for free!
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😴 Roman Chamomile is 20% off this month!
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😲 Place a 200pv order this month and get Bergamot (15ml), Copaiba (15ml) and Yellow Mandarin (5ml) for FREE!! —
🥰 Convention products now available to purchase as individual products - Black Spruce, Rose, Celery Seed, Citronella, Lemon Eucalyptus, Adaptiv, Adaptiv Touch and Tamer! —
😲 Order the full convention kit from the US warehouse and get a FREE Copaiba, Copaiba softgels and Yellow Mandarin - and Clementine if you order it on your LRP before the 15th!!
Enroll with the convention kit and get the free products with the 200pv promotion!

Need help getting started or placing your order, send me a message 💜

It’s raining free and new products this month!! — 🍊 Free product of the month is Clementine which you can’t buy — 😲 Place a 125+pv LRP order before the 15th and get it for free! — 😴 Roman Chamomile is 20% off this month! — 😲 Place a 200pv order this month and get Bergamot (15ml), Copaiba (15ml) and Yellow Mandarin (5ml) for FREE!! — 🥰 Convention products now available to purchase as individual products - Black Spruce, Rose, Celery Seed, Citronella, Lemon Eucalyptus, Adaptiv, Adaptiv Touch and Tamer! — 😲 Order the full convention kit from the US warehouse and get a FREE Copaiba, Copaiba softgels and Yellow Mandarin - and Clementine if you order it on your LRP before the 15th!! Enroll with the convention kit and get the free products with the 200pv promotion! Need help getting started or placing your order, send me a message 💜

Chocolate covered strawberry shakes (& cacti) make me happy - especially knowing it’s helping heal & fuel my body, not making it inflamed!
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With my Endometriosis, and other autoimmune issues, I’ve learned that there are many foods I should steer away from. Those mainly include soy, gluten, and dairy. If you’ve ever tried to find a dairy free protein shake, it’s most likely made with soy ....
BUT then I discovered Arbonne! And so many of my food stressors melted away. Not only had I finally found protein powder that was soy free, dairy free, gluten free, && vegan - but that ingredient policy expanded to all their products. Arbonne is way more than protein, and I love knowing no matter what kinds of products I need, I can shop worry free knowing these products aren’t going to cause a flare.
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If you have some food allergies, or have been struggling with auto immune diseases / endometriosis - I’d love to help you figure out how to help your body fight back!
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#spoonie #arbonne #vegan #cactus #endometriosis #adenomyosis #autoimmunedisease #proteinshake #soyfree #glutenfree #dairyfree #puresafebeneficial #theycallmetubeless

Chocolate covered strawberry shakes (& cacti) make me happy - especially knowing it’s helping heal & fuel my body, not making it inflamed! • With my Endometriosis, and other autoimmune issues, I’ve learned that there are many foods I should steer away from. Those mainly include soy, gluten, and dairy. If you’ve ever tried to find a dairy free protein shake, it’s most likely made with soy .... BUT then I discovered Arbonne! And so many of my food stressors melted away. Not only had I finally found protein powder that was soy free, dairy free, gluten free, && vegan - but that ingredient policy expanded to all their products. Arbonne is way more than protein, and I love knowing no matter what kinds of products I need, I can shop worry free knowing these products aren’t going to cause a flare. • If you have some food allergies, or have been struggling with auto immune diseases / endometriosis - I’d love to help you figure out how to help your body fight back! • #spoonie  #arbonne  #vegan  #cactus  #endometriosis  #adenomyosis  #autoimmunedisease  #proteinshake  #soyfree  #glutenfree  #dairyfree  #puresafebeneficial  #theycallmetubeless 

Had my first Simponi Aria infusion today. Everything went well. As of right now, I feel extremely tired and a bit dizzy. They told me I could have mild to moderate flu-like symptoms for 3 to 4 days, which is typical with biologics. I go back on October 29th for my second infusion and then December 30th for my 3rd infusion. These are my "loading doses." I will then be getting the infusions every 8 weeks. By the 3rd infusion, I should start to feel the positive effects of what this med is supposed to do for my Ankylosing Spondylitis. I have hope and faith that this medication will work for me!!
#Ankylosingspondylitis #ankylosingspondylitiswarrior #spoonielife #spooniewarrior #spoonie #chronicillnesswarrior #simponiaria #simponiariainfusion #igotthis

Had my first Simponi Aria infusion today. Everything went well. As of right now, I feel extremely tired and a bit dizzy. They told me I could have mild to moderate flu-like symptoms for 3 to 4 days, which is typical with biologics. I go back on October 29th for my second infusion and then December 30th for my 3rd infusion. These are my "loading doses." I will then be getting the infusions every 8 weeks. By the 3rd infusion, I should start to feel the positive effects of what this med is supposed to do for my Ankylosing Spondylitis. I have hope and faith that this medication will work for me!! #Ankylosingspondylitis  #ankylosingspondylitiswarrior  #spoonielife  #spooniewarrior  #spoonie  #chronicillnesswarrior  #simponiaria  #simponiariainfusion  #igotthis 

Last week was rough! Although this week has been easier, I have a little friend on the corner of my mouth as a reminder, lol. 
Grateful I've got my accessories to make me feel a little bit pretty 😉
#invisibleillness #spoonie #chronicwarrior #sjogrenssyndrome #aps #fibromyalgia #lupus #chronicjointpain #chronicfatigue #brainfog #muscleaches #dryness #origamiowl #meaningfuljewelry #empowermentcollection #faithoverfear #gold

Last week was rough! Although this week has been easier, I have a little friend on the corner of my mouth as a reminder, lol. Grateful I've got my accessories to make me feel a little bit pretty 😉 #invisibleillness  #spoonie  #chronicwarrior  #sjogrenssyndrome  #aps  #fibromyalgia  #lupus  #chronicjointpain  #chronicfatigue  #brainfog  #muscleaches  #dryness  #origamiowl  #meaningfuljewelry  #empowermentcollection  #faithoverfear  #gold 

Thought you were safe❓
Deer tick population in the parks is as dense as it is in areas where Lyme disease is common.
People have the same risk of getting Lyme disease in some city parks as they do in suburban and rural landscapes.
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F-Lyme. Protect yourself and your loved ones from LYME disease today. ✔️Tested under the WHO guidelines @marshmellowgear protects you from those pesky lil ticks! .
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@lymestats @lymewarriorus
@lymetimes @lymetreatmentfoundation @lymelightfoundation .
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#lyme #lymedisease #chronicillness #lymewarrior #chroniclyme #lymediseaseawareness #chroniclymedisease #babesia #hamburgfair #lymediseasewarrior #invisibleillness #autoimmune #lymewarriors #lymedontkillmyvibe #autoimmunedisease #healing #lymetreatment #bartonella #love #spoonie #lymesucks #lymediseasesucks #lymesurvivor #lymeawareness #tickbite #rockymountainspottedfever #mycoplasma #chronicpain #health

Thought you were safe❓ Deer tick population in the parks is as dense as it is in areas where Lyme disease is common. People have the same risk of getting Lyme disease in some city parks as they do in suburban and rural landscapes. . F-Lyme. Protect yourself and your loved ones from LYME disease today. ✔️Tested under the WHO guidelines @marshmellowgear  protects you from those pesky lil ticks! . . . @lymestats  @lymewarriorus  @lymetimes  @lymetreatmentfoundation  @lymelightfoundation  . . . #lyme  #lymedisease  #chronicillness  #lymewarrior  #chroniclyme  #lymediseaseawareness  #chroniclymedisease  #babesia  #hamburgfair  #lymediseasewarrior  #invisibleillness  #autoimmune  #lymewarriors  #lymedontkillmyvibe  #autoimmunedisease  #healing  #lymetreatment  #bartonella  #love  #spoonie  #lymesucks  #lymediseasesucks  #lymesurvivor  #lymeawareness  #tickbite  #rockymountainspottedfever  #mycoplasma  #chronicpain  #health 

I’m having a pretty bad pain day, so I wanted to share my easy cleansing routine for this scenario: Cleansing water (on the face and neck), moisturizer, and lip balm. That plus teeth and hair brushing (if you can) will help you feel fresh and clean, something that I really appreciate when I’m stuck in bed.
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[ID: A small tube of moisturizer, a small bottle of cleansing water, and a lip balm stand on the edge of a sink.]
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#selfcare #buildaladder #eds #edsawareness #chronicallyill #chronicpain #chronicpainsucks #spoonie #spoonielife #wheelie #wheelchairgirl

I’m having a pretty bad pain day, so I wanted to share my easy cleansing routine for this scenario: Cleansing water (on the face and neck), moisturizer, and lip balm. That plus teeth and hair brushing (if you can) will help you feel fresh and clean, something that I really appreciate when I’m stuck in bed. . . . [ID: A small tube of moisturizer, a small bottle of cleansing water, and a lip balm stand on the edge of a sink.] . . . #selfcare  #buildaladder  #eds  #edsawareness  #chronicallyill  #chronicpain  #chronicpainsucks  #spoonie  #spoonielife  #wheelie  #wheelchairgirl 

These last about a minute in our house.  A great grab and go snack - quick to put together!

These last about a minute in our house. A great grab and go snack - quick to put together!

🍂🍂 🎃 OCTOBER 🎃 🍂🍂
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What have you got going on this month? .
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I might still be feeling a little overwhelmed but today I have a month of things to look forward to. Today Mum and I took Alfie for new shoes then went for a coffee. (1st pic).
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The last bits of my window display arrived today. See if you can spot what’s changed or been added. (2nd pic) .
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Then I got to enjoy my first pumpkin latte. Perfect! (3rd pic!)
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I’ve also got Alfie’s birthday. Halloween. My Step Dad’s birthday. School visits. Best friends birthday. Baby loss awareness week and of course my charity raffle. .
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Bring on October.
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⠀⠀ #boymum #mumof3boys #stepmum #angelmummy #rainbowmummy #wife #family #angelbaby #toddler #teenager #disabledparenting #mumswithcameras #chronicillness #spoonie #FND #dyslexia #dyspraxia #blogger #mummyblogger #neuroproblems #mumsclub #realmumlife #dyspraxicdomesticatedmummy #october  #babylossawarenessmonth #raffle #giveaway

🍂🍂 🎃 OCTOBER 🎃 🍂🍂 . What have you got going on this month? . . . I might still be feeling a little overwhelmed but today I have a month of things to look forward to. Today Mum and I took Alfie for new shoes then went for a coffee. (1st pic). . . The last bits of my window display arrived today. See if you can spot what’s changed or been added. (2nd pic) . . . Then I got to enjoy my first pumpkin latte. Perfect! (3rd pic!) . . I’ve also got Alfie’s birthday. Halloween. My Step Dad’s birthday. School visits. Best friends birthday. Baby loss awareness week and of course my charity raffle. . . Bring on October. . . ⠀⠀ #boymum  #mumof3boys  #stepmum  #angelmummy  #rainbowmummy  #wife  #family  #angelbaby  #toddler  #teenager  #disabledparenting  #mumswithcameras  #chronicillness  #spoonie  #FND  #dyslexia  #dyspraxia  #blogger  #mummyblogger  #neuroproblems  #mumsclub  #realmumlife  #dyspraxicdomesticatedmummy  #october  #babylossawarenessmonth  #raffle  #giveaway 

You know you're a spoonie when your dog brings you your pants.⠀⠀
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Sometimes (actually, LOT of times) chronic illness means that you're too sick to get dressed after a shower. ⠀⠀
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I guess she understands that I can't go outside when I'm too tired to put pants on.⠀
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But in her cute little doggy mind, she thinks she can help by bringing pants to me. She gets super excited when (if) I put them on. ⠀⠀
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😭 These girls are my little cheerleaders. What did we do to deserve dogs?⠀
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(Side note: I wonder if she can save me a spoon or two by picking out a whole outfit for me 🤔)⠀
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#spooniesquad #spoonie #spoonielife #chronicillness #chronicillnesswarrior #dogs #gooddog #dogsofinstagram #potssyndrome #potsie #dysautonomiaawareness #fatigue #invisibledisability #invisibleillness

You know you're a spoonie when your dog brings you your pants.⠀⠀ ⠀ Sometimes (actually, LOT of times) chronic illness means that you're too sick to get dressed after a shower. ⠀⠀ ⠀ I guess she understands that I can't go outside when I'm too tired to put pants on.⠀ ⠀⠀ But in her cute little doggy mind, she thinks she can help by bringing pants to me. She gets super excited when (if) I put them on. ⠀⠀ ⠀⠀ 😭 These girls are my little cheerleaders. What did we do to deserve dogs?⠀ ⠀ (Side note: I wonder if she can save me a spoon or two by picking out a whole outfit for me 🤔)⠀ ⠀⠀ #spooniesquad  #spoonie  #spoonielife  #chronicillness  #chronicillnesswarrior  #dogs  #gooddog  #dogsofinstagram  #potssyndrome  #potsie  #dysautonomiaawareness  #fatigue  #invisibledisability  #invisibleillness 

putting some packages together!!🖤
#carepackage #mentalhealth #chronicillness #spoonie

putting some packages together!!🖤 #carepackage  #mentalhealth  #chronicillness  #spoonie 

After 15 years of struggling with mental health issues, hospitalizations, incompetent doctors, and the damn patriarchy, I FINALLY received an official, ACCURATE set of diagnoses. 15 fucking years. Now I can finally take the appropriate steps for treatment, in the right direction, and also file for disability. Let the healing begin ❤️
#mentalhealthawareness #mentalhealth #mentalillness #spoonie #spoonies #spooniesisters #spooniesupport #spooniewitch

After 15 years of struggling with mental health issues, hospitalizations, incompetent doctors, and the damn patriarchy, I FINALLY received an official, ACCURATE set of diagnoses. 15 fucking years. Now I can finally take the appropriate steps for treatment, in the right direction, and also file for disability. Let the healing begin ❤️ #mentalhealthawareness  #mentalhealth  #mentalillness  #spoonie  #spoonies  #spooniesisters  #spooniesupport  #spooniewitch 

I am officially four weeks post op from my spinal fusion today! It's been quite a journey. They fused my skull to my spine (c2) with metal, donated bone, and my own bone marrow to save my life. My surgeons, the hospital staff, and my loved ones have been instrumental in recovery going so well. I was so lucky to have surgeons who were experts in my genetic condition and a hospital staff knowledgeable in it. It was night and day level of care from my previous spine surgery. My mom and boyfriend have been taking care of me for the last month and I am so so grateful to them. With the amount of care I've needed, it definitely hasn't been easy and I'm not always the most patient person with recovery but they've done so well.

I get the rest of my stitches out tomorrow and then I can finally wash my hair for the first time in a month. I am so excited to be moving forward.

It's still a long road to recovery ahead of us and there are ups and downs and roadblocks every day. But in a month so much has changed already. The biggest change is I haven't stopped breathing since the surgery so it most definitely saved my life. My dystonia (involuntary muscle movement) is also improving which is huge because that was debilitating. Most of the time, I don't have the headache I was living constantly for almost a year before surgery. Since this surgery recovery is measured in months and years, not weeks, a lot of the benefits won't be seen for a while yet. I'm hoping it will greatly help my pain and get me back to work. At the very least, it's going to get me out of bed which is life changing. I start physical therapy in the next couple of weeks and cannot wait to see the benefits of this surgery and get back to being active and having a life again.
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#cci #craniocervicalinstability #ehlersdanlossyndrome #eds #heds #atlantoaxialinstability #aai #spinalfusion #fusion #spinesurgery #aspenvista #selfie #chronicillness #spoonie #recovery #zebra

I am officially four weeks post op from my spinal fusion today! It's been quite a journey. They fused my skull to my spine (c2) with metal, donated bone, and my own bone marrow to save my life. My surgeons, the hospital staff, and my loved ones have been instrumental in recovery going so well. I was so lucky to have surgeons who were experts in my genetic condition and a hospital staff knowledgeable in it. It was night and day level of care from my previous spine surgery. My mom and boyfriend have been taking care of me for the last month and I am so so grateful to them. With the amount of care I've needed, it definitely hasn't been easy and I'm not always the most patient person with recovery but they've done so well. I get the rest of my stitches out tomorrow and then I can finally wash my hair for the first time in a month. I am so excited to be moving forward. It's still a long road to recovery ahead of us and there are ups and downs and roadblocks every day. But in a month so much has changed already. The biggest change is I haven't stopped breathing since the surgery so it most definitely saved my life. My dystonia (involuntary muscle movement) is also improving which is huge because that was debilitating. Most of the time, I don't have the headache I was living constantly for almost a year before surgery. Since this surgery recovery is measured in months and years, not weeks, a lot of the benefits won't be seen for a while yet. I'm hoping it will greatly help my pain and get me back to work. At the very least, it's going to get me out of bed which is life changing. I start physical therapy in the next couple of weeks and cannot wait to see the benefits of this surgery and get back to being active and having a life again. - - #cci  #craniocervicalinstability  #ehlersdanlossyndrome  #eds  #heds  #atlantoaxialinstability  #aai  #spinalfusion  #fusion  #spinesurgery  #aspenvista  #selfie  #chronicillness  #spoonie  #recovery  #zebra 

Man! All this cold weather has got my body seizing up in painful ways I can't describe!! And this is not the time to be seizing up!! I am supposed to be moving and painting and getting us prepared to leave a place and community that we have called "home" for 5 years! .
But it's more than just my body not cooperating, it's my anxiety over my things being touched, packed and moved, the loss of control over my safe spaces...if you've ever dealt with anxiety, you know that it's a relentless, factless monster that doesn't care that what you're doing is for your own good, it doesn't care that this will help us in the long run. It only cares about the irrational what if someone comes in while we are moving, I'm not safe anymore! What if my family hates me for not being useful, because useless people are trash! What about all that pain, you'll never recoup after all of this and they will leave you because you are weak! .
Welcome to anxiety - welcome to the most irrational fears taking control of your brain and playing whack-a-mole with your emotional wellbeing...to a point where you end up in panic attacks! And my rational mind knows that I'm being silly...knows that it's not true, but because that anxiety is hardwired into my emotions, I have no choice but to bend to the whims of those fears or risk feeling like I'm having a heart attack and dying on a regular basis! What a choice!!! And what fresh hell for anyone just trying to live their lives like normal people!
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 But I am pushing back...I WILL see this through because it WON'T actually kill me, despite what my messed up brain is trying to tell me. So between this brutal cold the monster currently residing in my mind, this is the hardest move I have EVER had to make and I know my family is desperate to see the same excitement that they have, and I'm trying. I really am. Hopefully when we are done and on the other side of this, I will look back on this struggle and hopefully will have learned something about myself...until then, I'm white-knucking this ride from here on out!!😳 .
#mycrazylykinslife #chronicanxietyawareness #crohnsdisease #chronicpainwarrior #chronicillnesslife #spoonie #anxietyproblems

Man! All this cold weather has got my body seizing up in painful ways I can't describe!! And this is not the time to be seizing up!! I am supposed to be moving and painting and getting us prepared to leave a place and community that we have called "home" for 5 years! . But it's more than just my body not cooperating, it's my anxiety over my things being touched, packed and moved, the loss of control over my safe spaces...if you've ever dealt with anxiety, you know that it's a relentless, factless monster that doesn't care that what you're doing is for your own good, it doesn't care that this will help us in the long run. It only cares about the irrational what if someone comes in while we are moving, I'm not safe anymore! What if my family hates me for not being useful, because useless people are trash! What about all that pain, you'll never recoup after all of this and they will leave you because you are weak! . Welcome to anxiety - welcome to the most irrational fears taking control of your brain and playing whack-a-mole with your emotional wellbeing...to a point where you end up in panic attacks! And my rational mind knows that I'm being silly...knows that it's not true, but because that anxiety is hardwired into my emotions, I have no choice but to bend to the whims of those fears or risk feeling like I'm having a heart attack and dying on a regular basis! What a choice!!! And what fresh hell for anyone just trying to live their lives like normal people! . But I am pushing back...I WILL see this through because it WON'T actually kill me, despite what my messed up brain is trying to tell me. So between this brutal cold the monster currently residing in my mind, this is the hardest move I have EVER had to make and I know my family is desperate to see the same excitement that they have, and I'm trying. I really am. Hopefully when we are done and on the other side of this, I will look back on this struggle and hopefully will have learned something about myself...until then, I'm white-knucking this ride from here on out!!😳 . #mycrazylykinslife  #chronicanxietyawareness  #crohnsdisease  #chronicpainwarrior  #chronicillnesslife  #spoonie  #anxietyproblems 

Goals. To be strong enough to truly LIVE is always the goal. Now if I could just retire in 2019 like my favorite unicorn @neal.agran . . .

#womenwhorun #runcim #chronicillness #cidp #gbs #thecollectivebeat #spoonie #collectivebeat #bejuststrong #juststrong #marathon #trailrunning

Goals. To be strong enough to truly LIVE is always the goal. Now if I could just retire in 2019 like my favorite unicorn @neal.agran  . . . #womenwhorun  #runcim  #chronicillness  #cidp  #gbs  #thecollectivebeat  #spoonie  #collectivebeat  #bejuststrong  #juststrong  #marathon  #trailrunning 

@womenwithendometriosis has it right again 👌🏼 Grateful for all you warriors that go through this with me 💛 ••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••
#endometriosis #endo #life #endometriosissupport #1in10 #laparoscopy #uterus #obgyn #awareness #doctor #help #share #gynecology #medicine #chronicillness #advocate #fertility #pain #endowarrior #share #endosisters #quotes #cyst #endometriosisawareness #support #spoonie #periodproblems #period #periods #adenomyosis

@womenwithendometriosis  has it right again 👌🏼 Grateful for all you warriors that go through this with me 💛 •••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••• #endometriosis  #endo  #life  #endometriosissupport  #1in10  #laparoscopy  #uterus  #obgyn  #awareness  #doctor  #help  #share  #gynecology  #medicine  #chronicillness  #advocate  #fertility  #pain  #endowarrior  #share  #endosisters  #quotes  #cyst  #endometriosisawareness  #support  #spoonie  #periodproblems  #period  #periods  #adenomyosis 

While #migraine can be just as severe in children as it is in adults, children often struggle to explain their symptoms and advocate for their health. Parents play an important role in helping their child’s school accommodate students with migraine. Learn more through the link in bio. ⁠⠀
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#migraine #migraineawareness #headache #MoveAgainstMigraine #migrainecommunity #migraineresearch #migrainelife #americanmigrainefoundation #invisibleillness #spoonie #chronicmigraine #notjustaheadache #migraineproblems #spoonielife #migrainessuck #chronicillness #kidsmigraine #butyoudontlooksick #spooniestrong #migraineatschool #migrainesupport #kidswithmigraine #pediatricmigraine⁠⠀

While #migraine  can be just as severe in children as it is in adults, children often struggle to explain their symptoms and advocate for their health. Parents play an important role in helping their child’s school accommodate students with migraine. Learn more through the link in bio. ⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ .⁠⠀ #migraine  #migraineawareness  #headache  #MoveAgainstMigraine  #migrainecommunity  #migraineresearch  #migrainelife  #americanmigrainefoundation  #invisibleillness  #spoonie  #chronicmigraine  #notjustaheadache  #migraineproblems  #spoonielife  #migrainessuck  #chronicillness  #kidsmigraine  #butyoudontlooksick  #spooniestrong  #migraineatschool  #migrainesupport  #kidswithmigraine  #pediatricmigraine ⁠⠀

It is hard to believe a week gone by since our dear friend passed away. It is hard to believe it really happened at all. Caroline fought for over 4 years, against Mitochondrial Disease and against a healthcare system that values the ego of doctors over the life quality of patients. Caroline was a passionate animal lover who has left behind so much of her own light reflected in the many people she helped and befriended even in dark times. She died on her terms, in her home, surrounded by people and dogs who love her immensely. Please take time to learn about #MitochondrialDisease as well as to hug and thank all of your loved ones (human and canine) for Caroline.
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#ThisIsMITO #ThinkMITO #MitoWarrior #Spoonie #ChronicIllness #RareDisease

It is hard to believe a week gone by since our dear friend passed away. It is hard to believe it really happened at all. Caroline fought for over 4 years, against Mitochondrial Disease and against a healthcare system that values the ego of doctors over the life quality of patients. Caroline was a passionate animal lover who has left behind so much of her own light reflected in the many people she helped and befriended even in dark times. She died on her terms, in her home, surrounded by people and dogs who love her immensely. Please take time to learn about #MitochondrialDisease  as well as to hug and thank all of your loved ones (human and canine) for Caroline. . #ThisIsMITO  #ThinkMITO  #MitoWarrior  #Spoonie  #ChronicIllness  #RareDisease 

⚓️⛵️🦞Rounding off Jindol’s nautical day with a stop off at the picturesque Cornish coastal village of Cadgwith (where we got wet taking this picture when the rising tide made a sudden leap for us! 😂) We went all out Cornish for this one- pasty and all! 
Do you have a design idea for Jindol’s next booties? Let us know 😊🐾 Help us share Jindol’s story and raise funds for his new bionic legs, link in his bio 🥰🐾
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#jindolsjourney  #cornwall #visitcornwall #cornishpasty #beautifulcornwall
#jindo #jindosofinstagram #koreanrescuedog #londondogs #dogsoflondon #ilovemydog #lovedogs #rescuedogsofinstagram #handicapable #disableddog #chronicillness #disableddogsofinstagram #rescueismyfavouritebreed #adoptdontshop
#chronicpain #spoonie #differentisbeautiful #unconditionallove #specialneedsdog #handicappeddog #disability #thedodo

⚓️⛵️🦞Rounding off Jindol’s nautical day with a stop off at the picturesque Cornish coastal village of Cadgwith (where we got wet taking this picture when the rising tide made a sudden leap for us! 😂) We went all out Cornish for this one- pasty and all! Do you have a design idea for Jindol’s next booties? Let us know 😊🐾 Help us share Jindol’s story and raise funds for his new bionic legs, link in his bio 🥰🐾 • • • • • • • • • • #jindolsjourney  #cornwall  #visitcornwall  #cornishpasty  #beautifulcornwall  #jindo  #jindosofinstagram  #koreanrescuedog  #londondogs  #dogsoflondon  #ilovemydog  #lovedogs  #rescuedogsofinstagram  #handicapable  #disableddog  #chronicillness  #disableddogsofinstagram  #rescueismyfavouritebreed  #adoptdontshop  #chronicpain  #spoonie  #differentisbeautiful  #unconditionallove  #specialneedsdog  #handicappeddog  #disability  #thedodo 

Hello everyone🙂 Applications for October care packages are now open!! I will be available via Dms for any questions you have. The application form will close automatically when it reaches my max amount for shipped packages this month. Please make sure you qualify to apply & agree to the rules. These rules I have set are important & reflect my mission & goal for my care package organization. If you don’t currently fail under the rules please wait to apply till you do.💜( To apply you will be required to donate $8 for shipping for your package (USA based shipping price international will be more depending on where you live) I will need this sent within a few days after I confirm I received your application: Please wait to send till after I confirm with you that I got your application & everything is filled out correctly. I should be able to confirm via Dms the day after applications or the next day) Remember for my current packages It needs to be the person receiving the package applying unless your a parent applying your child.💗Also remember I can only take a set number of applications a month. Applications normally fill up fast so I suggest filling out the application as soon as possible. If you don’t get an application submitted this month there is always next month!! Any questions feel free to message me🙂Check out my FAQ section of website for all info about applying. Application link found via link in bio on here or on my website💕Donation links via bio link💕  #chronicwarriorboxes #chronicillness #chronicillnessbox #carepackage #carepackages #spreadhappiness #giveback #sicklife #illness  #donations #donationsaccepted #chronicwarrior #chronicwarriors #invisibleillness #chronicillnesswarrior #invisibleillnessawareness #nonprofit #cancer #copd #eds #cysticfibrosis #pots #spoonie #mcas #tachycardia #dysautonomia #lupus #cf #terminalillness #chronicwarriorcarepackages

Hello everyone🙂 Applications for October care packages are now open!! I will be available via Dms for any questions you have. The application form will close automatically when it reaches my max amount for shipped packages this month. Please make sure you qualify to apply & agree to the rules. These rules I have set are important & reflect my mission & goal for my care package organization. If you don’t currently fail under the rules please wait to apply till you do.💜( To apply you will be required to donate $8 for shipping for your package (USA based shipping price international will be more depending on where you live) I will need this sent within a few days after I confirm I received your application: Please wait to send till after I confirm with you that I got your application & everything is filled out correctly. I should be able to confirm via Dms the day after applications or the next day) Remember for my current packages It needs to be the person receiving the package applying unless your a parent applying your child.💗Also remember I can only take a set number of applications a month. Applications normally fill up fast so I suggest filling out the application as soon as possible. If you don’t get an application submitted this month there is always next month!! Any questions feel free to message me🙂Check out my FAQ section of website for all info about applying. Application link found via link in bio on here or on my website💕Donation links via bio link💕 #chronicwarriorboxes  #chronicillness  #chronicillnessbox  #carepackage  #carepackages  #spreadhappiness  #giveback  #sicklife  #illness  #donations  #donationsaccepted  #chronicwarrior  #chronicwarriors  #invisibleillness  #chronicillnesswarrior  #invisibleillnessawareness  #nonprofit  #cancer  #copd  #eds  #cysticfibrosis  #pots  #spoonie  #mcas  #tachycardia  #dysautonomia  #lupus  #cf  #terminalillness  #chronicwarriorcarepackages 

So me and Butter watched bake off! Lols...it’s our Tuesday thing! 😆🤗😆#pets #lizardsofinstagram  Jelly is still in full shed...downing bugs like some sort of remorseless eating machine! Lol...and Peanut just can’t be bothered with the outside today!...so cave he has been! Looool...night night from the boys! 🦎💤❤️💜 #fibromyalgia #chronicillness #chronicpain #spoonie #fibromyalgiaawareness #depression #anxiety #asthma #life #spoonielife #butyoudontlooksick #mylife #pain #tired #exhausted #love #reptiles #me #lizard #chronicfatiguesyndrome #book #craft #artsy #tattoo

So me and Butter watched bake off! Lols...it’s our Tuesday thing! 😆🤗😆#pets  #lizardsofinstagram  Jelly is still in full shed...downing bugs like some sort of remorseless eating machine! Lol...and Peanut just can’t be bothered with the outside today!...so cave he has been! Looool...night night from the boys! 🦎💤❤️💜 #fibromyalgia  #chronicillness  #chronicpain  #spoonie  #fibromyalgiaawareness  #depression  #anxiety  #asthma  #life  #spoonielife  #butyoudontlooksick  #mylife  #pain  #tired  #exhausted  #love  #reptiles  #me  #lizard  #chronicfatiguesyndrome  #book  #craft  #artsy  #tattoo 

October is Dysautonomia Awareness Month and I am a Postural Orthostatic Tachycardia (POTS) Warrior! 🎗 My body constantly feels like it’s running a marathon. When standing, it’s not uncommon for my heart rate to shoot up to the 190s. I get tremors, chest pain, migraines, vertigo, blood pooling/swelling in my feet and hands, sensory overload (sensitivity to light and sound), heat intolerance, migraines, mobility issues ... just to name a few. When going from sitting to standing, I get dizzy and black out more often than not. This is normal for me, so thankfully my service dog, @marloanncavalier, alerts me to sit down if my heart rate is getting too high. I’m currently not in treatment for my POTS symptoms, because I’m on a waiting list for a specialist, but staying hydrated, increasing my salt intake, wearing compression socks, avoiding standing or walking for any length of time, and avoiding heat have all been helpful factors that my referring neurologist suggested. 🚰🧂 I also highly suggest taking one day at a time. 😉
#potssyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #dysautonomiaawarenessmonth #autonomicdysfunction #brokennervoussystem
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#fibromyalgia #fibromyalgiawarrior #fibrowarrior #chronicpain #nervepain #musclepain #jointpain #migraine #chronicmigraine #migraine #migrainewarrior #chronicillness #invisibleillness #chronicfatiguesyndrome #degenerativediscdisease #arthritis #hypermobility #tachycardia #spoonie #servicedog #medicalalertdog #multipurposeservicedog

October is Dysautonomia Awareness Month and I am a Postural Orthostatic Tachycardia (POTS) Warrior! 🎗 My body constantly feels like it’s running a marathon. When standing, it’s not uncommon for my heart rate to shoot up to the 190s. I get tremors, chest pain, migraines, vertigo, blood pooling/swelling in my feet and hands, sensory overload (sensitivity to light and sound), heat intolerance, migraines, mobility issues ... just to name a few. When going from sitting to standing, I get dizzy and black out more often than not. This is normal for me, so thankfully my service dog, @marloanncavalier , alerts me to sit down if my heart rate is getting too high. I’m currently not in treatment for my POTS symptoms, because I’m on a waiting list for a specialist, but staying hydrated, increasing my salt intake, wearing compression socks, avoiding standing or walking for any length of time, and avoiding heat have all been helpful factors that my referring neurologist suggested. 🚰🧂 I also highly suggest taking one day at a time. 😉 #potssyndrome  #posturalorthostatictachycardiasyndrome  #dysautonomia  #dysautonomiaawareness  #dysautonomiaawarenessmonth  #autonomicdysfunction  #brokennervoussystem  • • • • • #fibromyalgia  #fibromyalgiawarrior  #fibrowarrior  #chronicpain  #nervepain  #musclepain  #jointpain  #migraine  #chronicmigraine  #migraine  #migrainewarrior  #chronicillness  #invisibleillness  #chronicfatiguesyndrome  #degenerativediscdisease  #arthritis  #hypermobility  #tachycardia  #spoonie  #servicedog  #medicalalertdog  #multipurposeservicedog 

Go easy on yourself, you’re doing the best you can 💛

Go easy on yourself, you’re doing the best you can 💛

I have always had stomach problems. I’ve been diagnosed with GERD, IBS, and lactose intolerance in the past. Every year it seemed like my stomach hurt worse, and I bloat worse than I used to. Eventually my GERD/IBS started flaring up to the point the discomfort was daily. As more time passed I gradually couldn’t eat curtain foods and to this day, I can’t finish my whole meal. When we go out to a restaurant, I order kids meals and still can’t manage to finish that. I throw up at least once a day and my flare ups are 10 times worse. 
I was recently diagnosed with gastroparesis. It’s a daily struggle.  Working is hard, getting out of bed is hard. I’m constantly in pain.  It sucks because before I could eat all the foods I  wanted whenever I wanted. Now if I take one bite of a chicken nugget I can’t help but burp it up or just throw it up. Food isn’t as enjoyable as it used to be.
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My family has a long list of people with paralyzed stomachs, gastroparesis, ibs, GERD, etc. with that being said,
my next doctor appointment is on October 30th. I’m hoping they will figure out a way to fix it, and if not, here’s to a never ending story. 
#gastroparesis #chronicillness #spoonie

I have always had stomach problems. I’ve been diagnosed with GERD, IBS, and lactose intolerance in the past. Every year it seemed like my stomach hurt worse, and I bloat worse than I used to. Eventually my GERD/IBS started flaring up to the point the discomfort was daily. As more time passed I gradually couldn’t eat curtain foods and to this day, I can’t finish my whole meal. When we go out to a restaurant, I order kids meals and still can’t manage to finish that. I throw up at least once a day and my flare ups are 10 times worse. I was recently diagnosed with gastroparesis. It’s a daily struggle. Working is hard, getting out of bed is hard. I’m constantly in pain. It sucks because before I could eat all the foods I wanted whenever I wanted. Now if I take one bite of a chicken nugget I can’t help but burp it up or just throw it up. Food isn’t as enjoyable as it used to be. - - - My family has a long list of people with paralyzed stomachs, gastroparesis, ibs, GERD, etc. with that being said, my next doctor appointment is on October 30th. I’m hoping they will figure out a way to fix it, and if not, here’s to a never ending story. #gastroparesis  #chronicillness  #spoonie 

Fever, sore throat, and aches....Knew it would happen after the busy week I’ve had....
Rest. Rest. Vitamin C. Rest....
TOMORROW IS A NEW DAY! 
#lupus #compromisedimmunesystem #lyme #prednisone #fullweekforme #easyweekforahealthyperson #lupussucks #autoimmunsucks #spoonie #healing #restmustrest

Fever, sore throat, and aches....Knew it would happen after the busy week I’ve had.... Rest. Rest. Vitamin C. Rest.... TOMORROW IS A NEW DAY! #lupus  #compromisedimmunesystem  #lyme  #prednisone  #fullweekforme  #easyweekforahealthyperson  #lupussucks  #autoimmunsucks  #spoonie  #healing  #restmustrest 

It’s POTS awareness month! 
If you aren’t aware, this is one hell of a syndrome. 
Postural Orthostatic tachycardia syndrome aka when you stand up too fast, your heart will race out your chest and you may pass out. 
No joke. This illness is connected to #mcas and #eds and tends to be brought on by unstable mast cells. 
Low blood pressure, swelling, headaches, syncope (fainting), chest pain or pressure, difficulty breathing and dizziness are all symptoms. 
It can be triggered by many different things. I, personally, find that heat and humidity, lack of sleep, not enough food water and salt intake can set me off. Sometimes, I don’t even see it coming. You’ll never catch me without my Salt shaker in my purse 😂

The reaction I get is feeling like I can’t get up, combined with a panic attack. Imagine feeling like you’re going to hyperventilate, only to be unable to get up and help yourself. The daily leg swells are my favourite bit 😝. Treatment is different for everyone and it makes it difficult for many people to work. But it’s not gonna stop me... I just might have to lay down first 💪🏻

It’s POTS awareness month! If you aren’t aware, this is one hell of a syndrome. Postural Orthostatic tachycardia syndrome aka when you stand up too fast, your heart will race out your chest and you may pass out. No joke. This illness is connected to #mcas  and #eds  and tends to be brought on by unstable mast cells. Low blood pressure, swelling, headaches, syncope (fainting), chest pain or pressure, difficulty breathing and dizziness are all symptoms. It can be triggered by many different things. I, personally, find that heat and humidity, lack of sleep, not enough food water and salt intake can set me off. Sometimes, I don’t even see it coming. You’ll never catch me without my Salt shaker in my purse 😂 The reaction I get is feeling like I can’t get up, combined with a panic attack. Imagine feeling like you’re going to hyperventilate, only to be unable to get up and help yourself. The daily leg swells are my favourite bit 😝. Treatment is different for everyone and it makes it difficult for many people to work. But it’s not gonna stop me... I just might have to lay down first 💪🏻

What’s your most bothersome symptom, that if you l could eradicate, your quality of life would improve immensely? For me, it’s nocturnal symptoms. I can deal with almost anything during the day, but the nighttime symptoms during a flare get exhausting. .
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#sweetenedbynature #crohns #crohnsdisease #autoimmunepaleo #scddiet #aip #paleo #medschool #medstudent #womeninmedicine #ibd #ibdaid #healing #scd #entyvio #stelara #autoimmuneprotocol #infusion #hospital #sick #remicade #vedolizumab #ulcerativecolitis #spoonie #crohnswarrior #crohnsflare #remicade #holistichealing #remission

What’s your most bothersome symptom, that if you l could eradicate, your quality of life would improve immensely? For me, it’s nocturnal symptoms. I can deal with almost anything during the day, but the nighttime symptoms during a flare get exhausting. . . . . #sweetenedbynature  #crohns  #crohnsdisease  #autoimmunepaleo  #scddiet  #aip  #paleo  #medschool  #medstudent  #womeninmedicine  #ibd  #ibdaid  #healing  #scd  #entyvio  #stelara  #autoimmuneprotocol  #infusion  #hospital  #sick  #remicade  #vedolizumab  #ulcerativecolitis  #spoonie  #crohnswarrior  #crohnsflare  #remicade  #holistichealing  #remission 

I’m Fall-in in love with this Care Box! 🍃🍄 It’s filled with skin loving goodies from @get_rael and @wedderspoonofficial, who were both generous and kind enough to donate a bunch of their products for the Care Boxes! These boxes are the foundation and purpose of Stevie Project, in hopes to bring feelings of comfort, self love, and support to those in our communities. Living with Chronic or Mental Illnesses is not something anyone has to do alone. As long as Stevie Project exists, I will continue to pour my creativity into it, and find ways to send boxes all over the world. ..
But it’s starts with a hand embroidered tee, hat, crewneck or tote, and the proceeds will be used to send a Care Box to a woman in our communities. The Chronic Illness, Mental Health, and Humankind Communities 💛 Thank you to everyone who has supported SP, donated, and shared the mission thatI will continue to fight for. This wouldn’t be possible without you!

I’m Fall-in in love with this Care Box! 🍃🍄 It’s filled with skin loving goodies from @get_rael  and @wedderspoonofficial , who were both generous and kind enough to donate a bunch of their products for the Care Boxes! These boxes are the foundation and purpose of Stevie Project, in hopes to bring feelings of comfort, self love, and support to those in our communities. Living with Chronic or Mental Illnesses is not something anyone has to do alone. As long as Stevie Project exists, I will continue to pour my creativity into it, and find ways to send boxes all over the world. .. But it’s starts with a hand embroidered tee, hat, crewneck or tote, and the proceeds will be used to send a Care Box to a woman in our communities. The Chronic Illness, Mental Health, and Humankind Communities 💛 Thank you to everyone who has supported SP, donated, and shared the mission thatI will continue to fight for. This wouldn’t be possible without you!

This should be obvious. Hire and consult disabled writers when writing disabled characters, and hire disabled actors.
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[ID : a tweet of mine which reads Only👏hire👏disabled👏actors👏to👏play👏disabled👏characters.]

This should be obvious. Hire and consult disabled writers when writing disabled characters, and hire disabled actors. . . . . [ID : a tweet of mine which reads Only👏hire👏disabled👏actors👏to👏play👏disabled👏characters.]

For the first time in nearly a year, I have managed to get myself sat down and editing and here is the finished product, I hope you enjoy watching it, although it is short, I am determined to get back into doing this on a more regular basis. 
I thought I would start the spooky season off with some lost footage from last years halloween discoveries as I walked around and my halloween costume evolution at the end.

https://youtu.be/dXr4Dvzq-mI

There is a blog post about why my life impacts so much on my abilities to edit and film. Check it out at https://www.tumblr.com/blog/roxsannel .

Please let me know what you think of the video, I appreciate any feedback you may have, also feedback on the pole on the video would be awesome too! 
#journeyofalifetime #chronicillness #invisibleillness #commonvariableimmunodeficiency #cvid #zebra #zebrastrong #fibromyalgia #spoonie #spoonielife #halloween #halloweencostume #myfavouritetimeoftheyear

For the first time in nearly a year, I have managed to get myself sat down and editing and here is the finished product, I hope you enjoy watching it, although it is short, I am determined to get back into doing this on a more regular basis. I thought I would start the spooky season off with some lost footage from last years halloween discoveries as I walked around and my halloween costume evolution at the end. https://youtu.be/dXr4Dvzq-mI There is a blog post about why my life impacts so much on my abilities to edit and film. Check it out at https://www.tumblr.com/blog/roxsannel . Please let me know what you think of the video, I appreciate any feedback you may have, also feedback on the pole on the video would be awesome too! #journeyofalifetime  #chronicillness  #invisibleillness  #commonvariableimmunodeficiency  #cvid  #zebra  #zebrastrong  #fibromyalgia  #spoonie  #spoonielife  #halloween  #halloweencostume  #myfavouritetimeoftheyear 

Happy 1st day of October everyone! 🍁🍂. I feel like I haven’t posted in forever. Life has been crazy and I feel like I’m just trying to keep my head above water! It’s hard to manage chronic illnesses, conquer your last semester of nursing school, and try to get a job! 
I am planning on submitting my applications for jobs starting early next week or the week after that. One of the hospitals I’m interested in currently has a general pediatric position open that I’m applying for. The other hospital does not, so I’m still trying to figure out what I’m going to do about that. Maybe email them to see if there’s a position open that isn’t posted? They do have NICU and PICU positions open but those really aren’t my passion and I think it would be hard to start in such a specialized unit as a new grad if it isn’t what you are super passionate about. I wouldn’t mind waiting since I’m not planning on starting till February, but I was hoping to only make one trip to NM for interviews. And I don’t want to wait any longer because I don’t want that other position to be filled!
Anyways, if you guys have any tips/advice about resumes, applying, interviews, etc. I would love to hear them! ✨ 
My resume is almost finished, I just need to write my professional statement. I also haven’t completed my cover letter. After that, I’ll be good to go! 
#spoonienursingstudent #spooniestudent

Happy 1st day of October everyone! 🍁🍂. I feel like I haven’t posted in forever. Life has been crazy and I feel like I’m just trying to keep my head above water! It’s hard to manage chronic illnesses, conquer your last semester of nursing school, and try to get a job! I am planning on submitting my applications for jobs starting early next week or the week after that. One of the hospitals I’m interested in currently has a general pediatric position open that I’m applying for. The other hospital does not, so I’m still trying to figure out what I’m going to do about that. Maybe email them to see if there’s a position open that isn’t posted? They do have NICU and PICU positions open but those really aren’t my passion and I think it would be hard to start in such a specialized unit as a new grad if it isn’t what you are super passionate about. I wouldn’t mind waiting since I’m not planning on starting till February, but I was hoping to only make one trip to NM for interviews. And I don’t want to wait any longer because I don’t want that other position to be filled! Anyways, if you guys have any tips/advice about resumes, applying, interviews, etc. I would love to hear them! ✨ My resume is almost finished, I just need to write my professional statement. I also haven’t completed my cover letter. After that, I’ll be good to go! #spoonienursingstudent  #spooniestudent 

The straw in this juice reminds me of a tie my dad owns. The look of it against the color of the juice really warms my heart. As we enter a new year and a new season, we typically focus on warming ingredients to counter cooler weather. That’s smart, yet what if you can’t have quotidian fall produce, like root veg? What if beets dilate your blood vessels, and you have low blood pressure? What if butternut squash upset your tummy and your low FODMAP diet? I say this: Don’t have them. Ingredients matter, even if they’re “healthy.” This tie-inspired juice of beet, carrot, cilantro, ginger and lemon is for those with high blood pressure or low iron. The vitamin C in carrots and lemon improves iron absorption and acts as a diuretic to counter sodium levels. Cilantro is also a diuretic. The high potassium in the carrot excretes excess sodium from the body to lower BP. And ginger is an antioxidant maven for almost everybody. There’s a juice for everyone! 🌈
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#juiceandsalt #juice #coldpressedjuice #lowiron #irondeficiency #highbloodpressure #dysautonomia #dysautonomiaawareness #autoimmunedisease #autoimmunity #chronicillness #spoonie #posturalorthostatictachycardiasyndrome #invisibleillness

The straw in this juice reminds me of a tie my dad owns. The look of it against the color of the juice really warms my heart. As we enter a new year and a new season, we typically focus on warming ingredients to counter cooler weather. That’s smart, yet what if you can’t have quotidian fall produce, like root veg? What if beets dilate your blood vessels, and you have low blood pressure? What if butternut squash upset your tummy and your low FODMAP diet? I say this: Don’t have them. Ingredients matter, even if they’re “healthy.” This tie-inspired juice of beet, carrot, cilantro, ginger and lemon is for those with high blood pressure or low iron. The vitamin C in carrots and lemon improves iron absorption and acts as a diuretic to counter sodium levels. Cilantro is also a diuretic. The high potassium in the carrot excretes excess sodium from the body to lower BP. And ginger is an antioxidant maven for almost everybody. There’s a juice for everyone! 🌈 • #juiceandsalt  #juice  #coldpressedjuice  #lowiron  #irondeficiency  #highbloodpressure  #dysautonomia  #dysautonomiaawareness  #autoimmunedisease  #autoimmunity  #chronicillness  #spoonie  #posturalorthostatictachycardiasyndrome  #invisibleillness 

3 Days | Sometimes when things are going wrong, it’s easy to overlook the simple joys in life. But today, I’ve been surrounded by so many little things that I can’t help but be thankful. I’m thankful for the cute little uterus heating pad my mom surprised me with. I’m thankful for the NyQuil that’s helped me power through (and sleep through 😴) this cold so that I can be well before surgery. And I’m thankful for nail polish, to make my boring sick days a little more fun. 💅🏼 Today, I hope you find joy in one of your little things. 💛🍋 #endometriosis #endometriosisawareness #endowarrior #endosister #spoonie #chronicpain #chronicillness #sickday #joy #happiness #positivity #endolemonade

3 Days | Sometimes when things are going wrong, it’s easy to overlook the simple joys in life. But today, I’ve been surrounded by so many little things that I can’t help but be thankful. I’m thankful for the cute little uterus heating pad my mom surprised me with. I’m thankful for the NyQuil that’s helped me power through (and sleep through 😴) this cold so that I can be well before surgery. And I’m thankful for nail polish, to make my boring sick days a little more fun. 💅🏼 Today, I hope you find joy in one of your little things. 💛🍋 #endometriosis  #endometriosisawareness  #endowarrior  #endosister  #spoonie  #chronicpain  #chronicillness  #sickday  #joy  #happiness  #positivity  #endolemonade 

So grateful for my bridesmaids 🤗. Even though my bachelorette "un-party" was nothing but relaxing on a beach,  it was a much needed break.
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#syringomyelia #medicalmystery #medical #undiagnosed #fighter #thereisananswer #wearestrong #chronicpain #chronicillness #raredisease #invisibledisease #nervepain #spoonie

So grateful for my bridesmaids 🤗. Even though my bachelorette "un-party" was nothing but relaxing on a beach, it was a much needed break. .. .. #syringomyelia  #medicalmystery  #medical  #undiagnosed  #fighter  #thereisananswer  #wearestrong  #chronicpain  #chronicillness  #raredisease  #invisibledisease  #nervepain  #spoonie 

It’s October 🍂👻🍁🎃! We’re ready! My head isn’t though 😅 migraine nonstop and Seb has been as on top of it as possible and trying his hardest to alleviate the issue. 
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#servicedogsofig #servicedogsofinstagram #sd #servicedog #medicalalerdog #chronicpain #chronicillness #narcolepsy #chronicmigrains #migrainalerdog #migrainalertsetvicedog #migrainalert #migrains #fibromyalgia #cockerspaniel #POTS #posturalorthostatictachycardiasyndrome#cocker #spaniel #cataplexy #spoonie #spoonielife #cardiacalertdog #cardiacalert #cardiacalertservicedog #Sjögren’s #lupus #autoimmune

It’s October 🍂👻🍁🎃! We’re ready! My head isn’t though 😅 migraine nonstop and Seb has been as on top of it as possible and trying his hardest to alleviate the issue. ____________________________________ #servicedogsofig  #servicedogsofinstagram  #sd  #servicedog  #medicalalerdog  #chronicpain  #chronicillness  #narcolepsy  #chronicmigrains  #migrainalerdog  #migrainalertsetvicedog  #migrainalert  #migrains  #fibromyalgia  #cockerspaniel  #POTS  #posturalorthostatictachycardiasyndrome #cocker  #spaniel  #cataplexy  #spoonie  #spoonielife  #cardiacalertdog  #cardiacalert  #cardiacalertservicedog  #Sjögren ’s #lupus  #autoimmune 

Homemade soup is my go-to meal for healthy eating. I can control the ingredients and allergens — like my current inability to enjoy nightshades (which I love!). .
What’s your favorite go-to healthy dinner? .
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#chronicillness #lymewarrior #autoimmunedisease #lupuswarrior #lupus #lymedisease #spoonie

Homemade soup is my go-to meal for healthy eating. I can control the ingredients and allergens — like my current inability to enjoy nightshades (which I love!). . What’s your favorite go-to healthy dinner? . . . #chronicillness  #lymewarrior  #autoimmunedisease  #lupuswarrior  #lupus  #lymedisease  #spoonie 

Raising awareness for Dysautonomia, because nobody should have to wait so long for a diagnosis, or be disbelieved by the professionals that we put our trust into 💜#dysautonomiaawareness

Raising awareness for Dysautonomia, because nobody should have to wait so long for a diagnosis, or be disbelieved by the professionals that we put our trust into 💜#dysautonomiaawareness 

Follow me along my continued journey to take back my health like never before from Lyme ,RA, Candida ,and so much more and learn all the tips and tricks to heal yourself for free .

Subscribe today at

Follow me along my continued journey to take back my health like never before from Lyme ,RA, Candida ,and so much more and learn all the tips and tricks to heal yourself for free . Subscribe today at

Although I grew up and spent most of my life in New York, Virginia is the place of my birth and holds a big piece of my heart🖤
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#virginia #VirginiaIsForLovers #Lake #clouds #cloudporn #reflection #sky #blue #country #exploremore #Travel #Roadtrip #Wanderlust #Outdoors #Nature #optoutside #Health #Spoonie #ChronicIllness #Cirs #lymedisease #MCAS #POtS #invisibleillness #dysautonomia #Lupus #anxiety #Hope #strength

Although I grew up and spent most of my life in New York, Virginia is the place of my birth and holds a big piece of my heart🖤 . . . #virginia  #VirginiaIsForLovers  #Lake  #clouds  #cloudporn  #reflection  #sky  #blue  #country  #exploremore  #Travel  #Roadtrip  #Wanderlust  #Outdoors  #Nature  #optoutside  #Health  #Spoonie  #ChronicIllness  #Cirs  #lymedisease  #MCAS  #POtS  #invisibleillness  #dysautonomia  #Lupus  #anxiety  #Hope  #strength 

Every once in a while...I share a photo of myself 😝
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Marcia from @freetheauthentic is looking for brand reps to show off & promote her wonderful headbands & other lovely wears so I thought I’d enter! When I got my hair cut short 2+ years ago due to hair loss etc from illness I took to wearing headbands more often. It’s given me confidence & also it’s a way of expressing myself as I don’t have longer hair I can style or colour 🌈🦄 I love my short hair even more now as it’s finally growing with a curl again & I like finding different headbands to accessorise with! All the headbands I currently have are from small businesses & I am pleased to find another great brand after my friend Harriot showed me her pretty headband from Marcia 🧡
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Included the prompt lists for the month of October which I’ll probably have a go at - Day 1 @myhousethismonth @mygardenthismonth @mywardrobethismonth : Share this list, also @storyofmyhome : Every once in a while...

Every once in a while...I share a photo of myself 😝 • Marcia from @freetheauthentic  is looking for brand reps to show off & promote her wonderful headbands & other lovely wears so I thought I’d enter! When I got my hair cut short 2+ years ago due to hair loss etc from illness I took to wearing headbands more often. It’s given me confidence & also it’s a way of expressing myself as I don’t have longer hair I can style or colour 🌈🦄 I love my short hair even more now as it’s finally growing with a curl again & I like finding different headbands to accessorise with! All the headbands I currently have are from small businesses & I am pleased to find another great brand after my friend Harriot showed me her pretty headband from Marcia 🧡 • Included the prompt lists for the month of October which I’ll probably have a go at - Day 1 @myhousethismonth  @mygardenthismonth  @mywardrobethismonth  : Share this list, also @storyofmyhome  : Every once in a while...

I mean we can all put on makeup, some nice clothes and try to seem as normal as possible at first sight. And sometimes it’s important for us to do that!
We don’t want complete strangers or people we don’t know so well to know, that we are not fine and be so vulnerable.

But on a normal day people can probably tell from a hundred meters that I’m not doing great. When someone is exhausted and tired, you can usually see that. My skin is so pale and the rings under my eyes are so dark, it’s not hard to overlook. 😆 Strangers probably think that I’m drunk or a drug addict. 😅

To most people around me who know me better and see me on a regular basis it has been pretty obvious for a while that something is wrong with me. I was obviously struggling with my health for a while. Even if I didn’t wanna show this, especially at work- but I’m not an actress! Sometimes I must have looked really rough.

But doctors told me again and again that I’m fine. In eight years no doctor ever had the idea to take a closer look. They all sent me home with just some standard testing that was apparently norma.

I don’t want to dwell on what-ifs, but the fact that it took eight years to finally get the right diagnosis definitely contributed to my condition getting worse and worse over the years. If I would have known what was wrong with me, I could have acted accordingly and maybe avoided getting worse.

But instead of taking my issues seriously, I was basically told that I’m fine and that I’m probably hysterical and overly sensitive.

So even though I basically looked like a vampire and I had so many Infections on a regular basis and so many symptoms that a healthy person shouldn’t have, doctors found it more plausible that I’m a sissy than going for some in depth testing to see if something could be wrong. 🤷🏻‍♀️ So for your entertainment I dug up a photo of me when I had some kind of infection a few years ago. I don’t know but this  picture doesn’t scream healthy to me... 😂
(Don’t you dare tell me I look cute, I have eyes and I know I look like death 🤣)

I mean we can all put on makeup, some nice clothes and try to seem as normal as possible at first sight. And sometimes it’s important for us to do that! We don’t want complete strangers or people we don’t know so well to know, that we are not fine and be so vulnerable. But on a normal day people can probably tell from a hundred meters that I’m not doing great. When someone is exhausted and tired, you can usually see that. My skin is so pale and the rings under my eyes are so dark, it’s not hard to overlook. 😆 Strangers probably think that I’m drunk or a drug addict. 😅 To most people around me who know me better and see me on a regular basis it has been pretty obvious for a while that something is wrong with me. I was obviously struggling with my health for a while. Even if I didn’t wanna show this, especially at work- but I’m not an actress! Sometimes I must have looked really rough. But doctors told me again and again that I’m fine. In eight years no doctor ever had the idea to take a closer look. They all sent me home with just some standard testing that was apparently norma. I don’t want to dwell on what-ifs, but the fact that it took eight years to finally get the right diagnosis definitely contributed to my condition getting worse and worse over the years. If I would have known what was wrong with me, I could have acted accordingly and maybe avoided getting worse. But instead of taking my issues seriously, I was basically told that I’m fine and that I’m probably hysterical and overly sensitive. So even though I basically looked like a vampire and I had so many Infections on a regular basis and so many symptoms that a healthy person shouldn’t have, doctors found it more plausible that I’m a sissy than going for some in depth testing to see if something could be wrong. 🤷🏻‍♀️ So for your entertainment I dug up a photo of me when I had some kind of infection a few years ago. I don’t know but this picture doesn’t scream healthy to me... 😂 (Don’t you dare tell me I look cute, I have eyes and I know I look like death 🤣)