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Shower!🚿
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I thought I would show you guys what I used to shower with my port! (Swipe right to see the shower shield)
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So this is called Shower Shield. In my opinion it works so much bette than press and seal or Saran Wrap. The edges stick to the skin and seal, so your port doesn’t get wet.-it honestly works wonders!! The one I’m using is 7x7 but they also have 9x9 which is way to big for me. lol
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Like I said this is amazing and thanks to it, I can finally take a real shower! Which I’ve missed like crazy! Lol you can gets these on amazon but the Company that supplies my TPN, sends it to me. If you have any questions, just ask guys!❤️
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#ileostomy #ileostomyawareness #ostomy #ostomates #ostomate #ostomybag #ostomate #ostomywarrior #warrior #stoma #chronicillness #chronicpain #hiddenillness #invisvibleillness #girlwithguts #loveyourself #bodypositivity #positivevibes #countyourblessings  #nocolonstillrollin #ittakesguts #toddtheostomy #chronicallymotivated #coloplast #spoonie #loveyourstoma #chronicloveclub #port #IV #showershield #TPN
Shower!🚿 • I thought I would show you guys what I used to shower with my port! (Swipe right to see the shower shield) • So this is called Shower Shield. In my opinion it works so much bette than press and seal or Saran Wrap. The edges stick to the skin and seal, so your port doesn’t get wet.-it honestly works wonders!! The one I’m using is 7x7 but they also have 9x9 which is way to big for me. lol • Like I said this is amazing and thanks to it, I can finally take a real shower! Which I’ve missed like crazy! Lol you can gets these on amazon but the Company that supplies my TPN, sends it to me. If you have any questions, just ask guys!❤️ ••• #ileostomy  #ileostomyawareness  #ostomy  #ostomates  #ostomate  #ostomybag  #ostomate  #ostomywarrior  #warrior  #stoma  #chronicillness  #chronicpain  #hiddenillness  #invisvibleillness  #girlwithguts  #loveyourself  #bodypositivity  #positivevibes  #countyourblessings  #nocolonstillrollin  #ittakesguts  #toddtheostomy  #chronicallymotivated  #coloplast  #spoonie  #loveyourstoma  #chronicloveclub  #port  #IV  #showershield  #TPN 
San Francisco bound 🌉

Tomorrow I have my appointment with the new headache specialist. 
Is a headache specialist also a neurologist? 
I guess it doesn’t matter because I am supposed to see my old neurologist soon anyways since he has seen me at my baseline. 
I am nervous for tomorrow but since I don’t know what to expect I don’t have any hopes. Which is good because that way hopefully the after appointment emotions will not be so all over the place. 
I am not going. To go into the appointment with the expectation or even hope that this doctor will do anything at this appointment because when I first saw the other headache specialist and pain specialist the first appointment with both doctors was just establishing my case and then there was another appointment shortly after to decided whether we were actually going to do something or not. 
Last night my doctor who is administering the IVIG called and  he expedited the paperwork and everything should be ready as early as tomorrow. 
I am not going to get into how he ended up calling after I had already posted (pretty late at night) but all I am going to say is there are some benefits to living in a small city where everyone knows everyone. 
Or more accurately my par not have connections 😉

But anyway. Hopefully we can get scheduled tomorrow and get infusing next week.
San Francisco bound 🌉 Tomorrow I have my appointment with the new headache specialist. Is a headache specialist also a neurologist? I guess it doesn’t matter because I am supposed to see my old neurologist soon anyways since he has seen me at my baseline. I am nervous for tomorrow but since I don’t know what to expect I don’t have any hopes. Which is good because that way hopefully the after appointment emotions will not be so all over the place. I am not going. To go into the appointment with the expectation or even hope that this doctor will do anything at this appointment because when I first saw the other headache specialist and pain specialist the first appointment with both doctors was just establishing my case and then there was another appointment shortly after to decided whether we were actually going to do something or not. Last night my doctor who is administering the IVIG called and he expedited the paperwork and everything should be ready as early as tomorrow. I am not going to get into how he ended up calling after I had already posted (pretty late at night) but all I am going to say is there are some benefits to living in a small city where everyone knows everyone. Or more accurately my par not have connections 😉 But anyway. Hopefully we can get scheduled tomorrow and get infusing next week.
I saw my GI doctor this morning and he ordered an endoscopy for tomorrow morning as well as a bowel prep today. He also did a gastric protocol (I think that’s what they called it); it consisted of something to coat my stomach as well as an oral lidocaine liquid (along with a few other things) so it’s supposed to numb my stomach. It didn’t really help much, so I’m not sure if it helps them get closer to what’s going on.
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It turns out I was pretty backed up which is concerning because it means that other parts of my GI tract also have slow motility, which is not good since I just had a total colectomy.
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I was feeling okay in terms of pain because I hadn’t eaten anything today—other than a sugar free lemon slushy thing—but then I had applesauce and it caused horrible pain. So they decided it’s back to clear liquids. 😏 It’s still a mystery at this point, but they’ve done a pretty decent job of managing my pain, which I’m grateful for. Also, shout out to my body for deciding abdominal pain wasn’t enough and throwing a migraine into the mix. 🧐
I saw my GI doctor this morning and he ordered an endoscopy for tomorrow morning as well as a bowel prep today. He also did a gastric protocol (I think that’s what they called it); it consisted of something to coat my stomach as well as an oral lidocaine liquid (along with a few other things) so it’s supposed to numb my stomach. It didn’t really help much, so I’m not sure if it helps them get closer to what’s going on. - It turns out I was pretty backed up which is concerning because it means that other parts of my GI tract also have slow motility, which is not good since I just had a total colectomy. - I was feeling okay in terms of pain because I hadn’t eaten anything today—other than a sugar free lemon slushy thing—but then I had applesauce and it caused horrible pain. So they decided it’s back to clear liquids. 😏 It’s still a mystery at this point, but they’ve done a pretty decent job of managing my pain, which I’m grateful for. Also, shout out to my body for deciding abdominal pain wasn’t enough and throwing a migraine into the mix. 🧐
CLC MEMBER FEATURE: 
Who?
My name is Andreia and I’m a Portuguese young woman living in the UK. I am happy to be sharing my story that can somehow help people in the same situation.
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What?
Mixed connective tissue disease (MCTD), a rare autoimmune disorder that features signs and symptoms of three different disorders: Lupus, Scleroderma and Polymyositis. Associated with the disease I developed Raynaud's Phenomenon and Anxious Syndrome.
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When?
I discovered the first signs of Raynaud's Phenomenon in 2013, they were visible on the hands and feet especially on colder days and when I went through stressful situations. I went to the GP and the doctor said that her hands were colder than mine. They didn’t ask for the necessary blood tests, so the situation was getting worse.
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How?
My life changed in 2014 when I was diagnosed with MCTD, already at an advanced stage. After two months of hospitalization and some misdiagnosis, there was no improvement and losing my motor skills and weight. I couldn’t eat or shower without help. Dr. Alexandre Sepriano saved my life when he decided to take me from Infectiology (they assumed I had meningitis) to Rheumatology. The next morning, I was able to walk. Four years have passed, and the disease has been mostly inactive, except in 2017 when I’ve made a bad choice in my life.
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Why?
Despite having a life dependent on medicines and having limitations in my daily life, I never gave up on my goals. I always worked and studied at the same time and nothing makes me prouder than having a Law degree from the most reputed School of Law in Portugal. My goal is to do a specialization in Human Rights in the UK. And to be able to have children in a healthy and peaceful way.
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I always feel that I fight against my slow and disobedient body. It just doesn’t follow my mind. Anything that demands physical effort has become a challenge for me, but nothing is impossible. Yes, I am incurable and for me, every day is a new beginning.
#chronicloveclub
CLC MEMBER FEATURE: Who? My name is Andreia and I’m a Portuguese young woman living in the UK. I am happy to be sharing my story that can somehow help people in the same situation. • What? Mixed connective tissue disease (MCTD), a rare autoimmune disorder that features signs and symptoms of three different disorders: Lupus, Scleroderma and Polymyositis. Associated with the disease I developed Raynaud's Phenomenon and Anxious Syndrome. • When? I discovered the first signs of Raynaud's Phenomenon in 2013, they were visible on the hands and feet especially on colder days and when I went through stressful situations. I went to the GP and the doctor said that her hands were colder than mine. They didn’t ask for the necessary blood tests, so the situation was getting worse. • How? My life changed in 2014 when I was diagnosed with MCTD, already at an advanced stage. After two months of hospitalization and some misdiagnosis, there was no improvement and losing my motor skills and weight. I couldn’t eat or shower without help. Dr. Alexandre Sepriano saved my life when he decided to take me from Infectiology (they assumed I had meningitis) to Rheumatology. The next morning, I was able to walk. Four years have passed, and the disease has been mostly inactive, except in 2017 when I’ve made a bad choice in my life. • Why? Despite having a life dependent on medicines and having limitations in my daily life, I never gave up on my goals. I always worked and studied at the same time and nothing makes me prouder than having a Law degree from the most reputed School of Law in Portugal. My goal is to do a specialization in Human Rights in the UK. And to be able to have children in a healthy and peaceful way. • I always feel that I fight against my slow and disobedient body. It just doesn’t follow my mind. Anything that demands physical effort has become a challenge for me, but nothing is impossible. Yes, I am incurable and for me, every day is a new beginning. #chronicloveclub 
🗣️ it with me, y'all...Now thanks be to God who always causes us to triumph! I've had this on mental repeat 🔁 since yesterday morning. We had our car stolen yesterday & after my hospitalization, blood clots, missed work, cancelling travel plans to waking up to go to the Doctor and walking to a space where the car used to be with a 😕🤔😮 look(and searching for the cameras to say we were #punkd ), calling it a #seriesofunfortunateevents seems like an epic understatement. We called the 👮🏾‍♀️👮🏽‍♂️🚔 and a detective has been assigned to us and we've got all the proper things in motion, but I just couldn't help feeling and thinking, "can a Warrior get a break? How much more are you going to put on me, Lord? Haven't I gone through enough?" 🤷🏾‍♀️ So Scripture says that faith comes by hearing the Word, so even if you read and know the Scripture... let's say it out loud together so we believe it deep in our souls. Let it soak in like seasoning! Speak life! It's so much easier said than done but trust me, once I started talking I couldn't ✋🏾🛑🚦 ✨The joy of the Lord is my 💪🏾. Now thanks be to God, who ALWAYS causes me to triumph. No weapon formed against me shall prosper. I am the head and not the tail.✨ I can keep going if you need🤣🤣 I ask you to please pray with us for peace of mind, safety and rest...and pray for the person(s) that felt they had to steal our vehicle. Little do they know how much it hurts to take the vehicle of a #chronicallyill #warrior , they just don't know that our God is so good and I'm just sitting here waiting on my blessing sevenfold 🙌🏾✨👑 Our God is a good one, and I trust the next chapter of this story because I truly LOVE the Author 📚🙌🏾✝️✨ I love y'all to the 🌒 and back! ~Lydia, #sicklecellwarriorprincess 🌱👑
🗣️ it with me, y'all...Now thanks be to God who always causes us to triumph! I've had this on mental repeat 🔁 since yesterday morning. We had our car stolen yesterday & after my hospitalization, blood clots, missed work, cancelling travel plans to waking up to go to the Doctor and walking to a space where the car used to be with a 😕🤔😮 look(and searching for the cameras to say we were #punkd  ), calling it a #seriesofunfortunateevents  seems like an epic understatement. We called the 👮🏾‍♀️👮🏽‍♂️🚔 and a detective has been assigned to us and we've got all the proper things in motion, but I just couldn't help feeling and thinking, "can a Warrior get a break? How much more are you going to put on me, Lord? Haven't I gone through enough?" 🤷🏾‍♀️ So Scripture says that faith comes by hearing the Word, so even if you read and know the Scripture... let's say it out loud together so we believe it deep in our souls. Let it soak in like seasoning! Speak life! It's so much easier said than done but trust me, once I started talking I couldn't ✋🏾🛑🚦 ✨The joy of the Lord is my 💪🏾. Now thanks be to God, who ALWAYS causes me to triumph. No weapon formed against me shall prosper. I am the head and not the tail.✨ I can keep going if you need🤣🤣 I ask you to please pray with us for peace of mind, safety and rest...and pray for the person(s) that felt they had to steal our vehicle. Little do they know how much it hurts to take the vehicle of a #chronicallyill  #warrior  , they just don't know that our God is so good and I'm just sitting here waiting on my blessing sevenfold 🙌🏾✨👑 Our God is a good one, and I trust the next chapter of this story because I truly LOVE the Author 📚🙌🏾✝️✨ I love y'all to the 🌒 and back! ~Lydia, #sicklecellwarriorprincess  🌱👑
No filter and no words, just pure admiration for this super hero of a woman 🙌🏽
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Little did I think growing up that at 29 I’d still be so reliant on my mum. It’s not just reliance, it’s pretending your still reliant because you have a bond so sweet you couldn’t imagine a day without hearing her voice and you actually want to have your mum around at every turn you make. It’s funny because when you’re younger you never think your mum is going to end up being your bestest friend ever - I remember praying for the day I got my license so I could free myself from my parents rules and now as adult I choose to hang with them.
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Not just because she helps me when I’m sick but even when I’m not she is front and centre, it’s a choice, my choice to be her best friend. To show her that as an adult I see everything she did for me as a child and everything she does for all of us now as adults (like sit with me for 8 hours on super uncomfy chairs in hospital and then cook and clean for me all week) and I respect the absolute shit out of her and my dad.
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It’s often hard to see past the daily grind and the general busyness of life so we don’t often stop to think about the sacrifices our parents have made for us so that we would be where we are today. They made sure we were well fed, dressed, educated, loved, moved countries to give us better opportunity, wiped tears, nursed our grazed knees, broken hearts, probably didn’t sleep for most of their adult lives worrying about us and we most likely drove them absolutely insane!!!! So take a moment today to think about them, remember them and if you’re lucky enough to still have them around, call them and thank them for how bloody amazing they are ❤️ #happyfriday
No filter and no words, just pure admiration for this super hero of a woman 🙌🏽 • Little did I think growing up that at 29 I’d still be so reliant on my mum. It’s not just reliance, it’s pretending your still reliant because you have a bond so sweet you couldn’t imagine a day without hearing her voice and you actually want to have your mum around at every turn you make. It’s funny because when you’re younger you never think your mum is going to end up being your bestest friend ever - I remember praying for the day I got my license so I could free myself from my parents rules and now as adult I choose to hang with them. • Not just because she helps me when I’m sick but even when I’m not she is front and centre, it’s a choice, my choice to be her best friend. To show her that as an adult I see everything she did for me as a child and everything she does for all of us now as adults (like sit with me for 8 hours on super uncomfy chairs in hospital and then cook and clean for me all week) and I respect the absolute shit out of her and my dad. • It’s often hard to see past the daily grind and the general busyness of life so we don’t often stop to think about the sacrifices our parents have made for us so that we would be where we are today. They made sure we were well fed, dressed, educated, loved, moved countries to give us better opportunity, wiped tears, nursed our grazed knees, broken hearts, probably didn’t sleep for most of their adult lives worrying about us and we most likely drove them absolutely insane!!!! So take a moment today to think about them, remember them and if you’re lucky enough to still have them around, call them and thank them for how bloody amazing they are ❤️ #happyfriday 
Before I was diagnosed 😢 I was so happy because I lost 30 pounds and was on my way to a healthier me. Then 3 months later I was diagnosed and gained about 10-15 pounds back lol.
Life, why you so crazy. *My hair could actually grow and not fall out too😭
#beforemydiagnosis 
#beforems
Before I was diagnosed 😢 I was so happy because I lost 30 pounds and was on my way to a healthier me. Then 3 months later I was diagnosed and gained about 10-15 pounds back lol. Life, why you so crazy. *My hair could actually grow and not fall out too😭 #beforemydiagnosis  #beforems 
I don’t get involved in any of the debates in the chronic illness community. I know some people feel it makes people focus on their illness or try to diagnose themselves. But I strongly feel there are so many benefits to what this amazing community brings. Although it should never replace medical advice; sharing information, sharing what questions we should be asking and being aware of different treatment options really helps us feel more in control of our health.
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After over a year of doctors initially dismissing symptoms relating to my heart, implying I am ‘obsessed’ with my HR on my watch & rejecting referrals from both specialists & my GP. My cardiac team finally have results showing there is something wrong & now who is the one obsessed with my heart rate as more tests are required?! If only they listened to me the first time 🙄
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The best doctors are the ones who don’t judge but listen to our experience & knowledge too. If we as a community can learn so much from each other, then the Doctors can learn from us too! ♥️
I don’t get involved in any of the debates in the chronic illness community. I know some people feel it makes people focus on their illness or try to diagnose themselves. But I strongly feel there are so many benefits to what this amazing community brings. Although it should never replace medical advice; sharing information, sharing what questions we should be asking and being aware of different treatment options really helps us feel more in control of our health. • After over a year of doctors initially dismissing symptoms relating to my heart, implying I am ‘obsessed’ with my HR on my watch & rejecting referrals from both specialists & my GP. My cardiac team finally have results showing there is something wrong & now who is the one obsessed with my heart rate as more tests are required?! If only they listened to me the first time 🙄 • The best doctors are the ones who don’t judge but listen to our experience & knowledge too. If we as a community can learn so much from each other, then the Doctors can learn from us too! ♥️
I haven’t been posting much recently but that’s because I’ve been at school and am tired by 9pm. Having a #chronicillness and attending school is ridiculously hard. After school I end up doing work and just crashing straight afterwards and I’m not being able to find much time to myself except for when I am sewing (this picture was taken while I took a break from doing work). While I enjoy school and working hard I feel as if I’m already in a cycle where my body is run down by Wednesday and I end up waking up on Thursdays not wanting to even move. Nevertheless I persist and even when I’m in pain and don’t want to move I sit on my bed and do my work in a more comfortable place instead of my desk. I don’t want to slip behind. I don’t want this illness to stop me from achieving my dreams. I have worked too hard for my goals to disappear because of a variable I have no control over. Even if I have to work twice or three times as hard as I used to I won’t give up. Not now. Not ever. #chronicloveclub #chronicfatigue #chronicpain #psoriasiswarrior #spoonie
I haven’t been posting much recently but that’s because I’ve been at school and am tired by 9pm. Having a #chronicillness  and attending school is ridiculously hard. After school I end up doing work and just crashing straight afterwards and I’m not being able to find much time to myself except for when I am sewing (this picture was taken while I took a break from doing work). While I enjoy school and working hard I feel as if I’m already in a cycle where my body is run down by Wednesday and I end up waking up on Thursdays not wanting to even move. Nevertheless I persist and even when I’m in pain and don’t want to move I sit on my bed and do my work in a more comfortable place instead of my desk. I don’t want to slip behind. I don’t want this illness to stop me from achieving my dreams. I have worked too hard for my goals to disappear because of a variable I have no control over. Even if I have to work twice or three times as hard as I used to I won’t give up. Not now. Not ever. #chronicloveclub  #chronicfatigue  #chronicpain  #psoriasiswarrior  #spoonie 
єχнαυѕтє∂. It’s been that type of day 😴
єχнαυѕтє∂. It’s been that type of day 😴
Meet penelope the picc.... offcoarse my body was unco operative so ended up with a jugular line too🙄🙄 on chest X-ray it’s already moved slightly so tom they reposition it.. start tpn tonight and fluids and already started tpn. Attempting j tube feeds at twentyml per hour not very well... but going penelope is a useful tool in helping to manage my symptoms. The icu doctor also told me I look twelve 😂🙄 #eds#gastroparesis#piccline#tpn#antibiotics#nomotelinespleade#rare#livingbeyond#starvingforacure#chronicloveclub#fightlikeawarrior
Meet penelope the picc.... offcoarse my body was unco operative so ended up with a jugular line too🙄🙄 on chest X-ray it’s already moved slightly so tom they reposition it.. start tpn tonight and fluids and already started tpn. Attempting j tube feeds at twentyml per hour not very well... but going penelope is a useful tool in helping to manage my symptoms. The icu doctor also told me I look twelve 😂🙄 #eds #gastroparesis #piccline #tpn #antibiotics #nomotelinespleade #rare #livingbeyond #starvingforacure #chronicloveclub #fightlikeawarrior 
There are up days and down days and round and round days...Having a daily yoga practice means I keep diving deep beyond the surface to be with myself. Not just the little me, but THE SELF another word to describe peace, stillness, wholeness. Being still enough to listen I remember that any high or low is just happening in my presence. No matter what the thought...I am 
#diabetes #diabetic #typeonediabetic #typeonediabetes #diatribe  #diabetichealth  #type1 #type1diabetic #diabetics #diabeetus #diabeticgirl #diabeticfitness #diabeticliving #diabeticlife #diabetessupport #yoga #yogi #yogapose #mindbodygram #mbgram #doc #iamwellandgood #selfloveclub #chronicloveclub #healthylifestyle #yogafordiabetes #bodypositivity #yogawisdom
There are up days and down days and round and round days...Having a daily yoga practice means I keep diving deep beyond the surface to be with myself. Not just the little me, but THE SELF another word to describe peace, stillness, wholeness. Being still enough to listen I remember that any high or low is just happening in my presence. No matter what the thought...I am #diabetes  #diabetic  #typeonediabetic  #typeonediabetes  #diatribe  #diabetichealth  #type1  #type1diabetic  #diabetics  #diabeetus  #diabeticgirl  #diabeticfitness  #diabeticliving  #diabeticlife  #diabetessupport  #yoga  #yogi  #yogapose  #mindbodygram  #mbgram  #doc  #iamwellandgood  #selfloveclub  #chronicloveclub  #healthylifestyle  #yogafordiabetes  #bodypositivity  #yogawisdom 
Sophia, Tommy, Kycie, Arya, George, and Blac, + more than I can even think of right now.  This is why we need a cure. For the parents grieving, for Sophia’s best friend and her best friend’s mom whose hearts are no doubt shattered, for Kycie’s family who have been so incredibly strong and encouraging, for the camp full of kids and staff that miss Blac, for his mom who has stayed so strong, for the T1’s that lost friends and have to face the same disease everyday, for everyone that lives with this daily and is so afraid of this happening to them, and the lives that were so very short, we NEED a CURE. #livebeyond #type1diabetes #chronicloveclub
Sophia, Tommy, Kycie, Arya, George, and Blac, + more than I can even think of right now. This is why we need a cure. For the parents grieving, for Sophia’s best friend and her best friend’s mom whose hearts are no doubt shattered, for Kycie’s family who have been so incredibly strong and encouraging, for the camp full of kids and staff that miss Blac, for his mom who has stayed so strong, for the T1’s that lost friends and have to face the same disease everyday, for everyone that lives with this daily and is so afraid of this happening to them, and the lives that were so very short, we NEED a CURE. #livebeyond  #type1diabetes  #chronicloveclub 
Scoot, scoot, skuuurt! 🛴😜 Transportation to dinner last night and I felt like a kid all over again. Didn’t hate it, actually loved it. 📷: @carlayyblair
Scoot, scoot, skuuurt! 🛴😜 Transportation to dinner last night and I felt like a kid all over again. Didn’t hate it, actually loved it. 📷: @carlayyblair
Perf lil pump pocket. I spent last night in bed, but this is my second workout today #swingsandroundabouts
Perf lil pump pocket. I spent last night in bed, but this is my second workout today #swingsandroundabouts 
I did math. I HATE MATH. But I digress. I spend a minimum of six hours a week driving to and attending medical appointments. This is the baseline: 2 PT sessions, 1 therapy session. This DOESN’T include any sort of specialist or procedure or lab or emergency. Next up, we have TIME at the pharmacy. Driving to and from. Waiting. TIME spent changing ostomy bags (2/3 a week), unpacking and re-storing supplies so they fit in my tiny room. TIME in said pharmacy buying the four uncovered medications, lidocaine patches, supplements, heat patches, first aid gel packs...that takes us to MONEY. The out of pocket expenses for the ostomy supplies that the state doesn’t cover, the $50 brace to stabilize my shitty ankle, those four medications I need, those numbing and heating supplies. The gas in the car to do all of these things. And this is before I’ve come down with a kidney infection or some other random urgent medical problem. Did I mention the pill count? 50 a day. 50 total. 7 of which are prescription. 2 of which are supplements (thanks anemia!). 4 aren’t covered. So by the time your Tuesday lunch has rolled around, I’m just barely coming up for air, because that’s 10 hours, $50-$100 bucks, half a tank of gas, and a lot of energy. Still wondering why I support affordable healthcare, socialized medicine, and government assistance programs? Because I’m not the only one who needs them. There are so many people like me. I’m not unique in any way. Think about that. By your Tuesday lunch, I, without getting sicker, have barely made it through. Now add a kidney infection and a leaky brain into the mix....take a stab at it. See how much time and money I spent that week. #staywoke #spinabifidastrong #spinabifida #neuraltubedefect #tetheredcordsyndrome #spoonie #chronicpain #chronicillness #warrior #neurogeniccolon #neurogenicbladder #ostomate #disability #chronicloveclub #mourvictoris
I did math. I HATE MATH. But I digress. I spend a minimum of six hours a week driving to and attending medical appointments. This is the baseline: 2 PT sessions, 1 therapy session. This DOESN’T include any sort of specialist or procedure or lab or emergency. Next up, we have TIME at the pharmacy. Driving to and from. Waiting. TIME spent changing ostomy bags (2/3 a week), unpacking and re-storing supplies so they fit in my tiny room. TIME in said pharmacy buying the four uncovered medications, lidocaine patches, supplements, heat patches, first aid gel packs...that takes us to MONEY. The out of pocket expenses for the ostomy supplies that the state doesn’t cover, the $50 brace to stabilize my shitty ankle, those four medications I need, those numbing and heating supplies. The gas in the car to do all of these things. And this is before I’ve come down with a kidney infection or some other random urgent medical problem. Did I mention the pill count? 50 a day. 50 total. 7 of which are prescription. 2 of which are supplements (thanks anemia!). 4 aren’t covered. So by the time your Tuesday lunch has rolled around, I’m just barely coming up for air, because that’s 10 hours, $50-$100 bucks, half a tank of gas, and a lot of energy. Still wondering why I support affordable healthcare, socialized medicine, and government assistance programs? Because I’m not the only one who needs them. There are so many people like me. I’m not unique in any way. Think about that. By your Tuesday lunch, I, without getting sicker, have barely made it through. Now add a kidney infection and a leaky brain into the mix....take a stab at it. See how much time and money I spent that week. #staywoke  #spinabifidastrong  #spinabifida  #neuraltubedefect  #tetheredcordsyndrome  #spoonie  #chronicpain  #chronicillness  #warrior  #neurogeniccolon  #neurogenicbladder  #ostomate  #disability  #chronicloveclub  #mourvictoris 
💟 Have you heard of Fibromyalgia?
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FMS is estimated to affect 3-6% of the population and causes wide spread pain all over the body and extreme fatigue.
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After having been diagnosed with multiple chronic illnesses, it is sometimes hard to differentiate the pain between them all, but I think I can really tell when extreme fatigue takes over due to FMS.
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What do you do to relieve your FMS symptoms, especially for chronic fatigue?
I’m suffering quite badly with this today and finding it hard to move my arms and legs because of the stiffness and how weak I feel.
It’s hard to explain, but it almost feels like my body has been drained of all it’s blood and nothing is being pumped around my body.
My muscles and bones feel weak and stiff and leading to tension headaches.
_
Purple @awarecauses necklaces also raise awareness for Fibromyalgia/FMS.
Get 10% off any jewellery with my promo code: iamsarahmac
10% of proceeds go to a charity related to the cause you have bought a necklace for. 💜
_
Hope you are all okay and feeling much better than I am today!
S. X
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#awarecauses #fibromyalgia #fms #chronicfatigue #invisibleillness #endometriosis #lupus #autoimmune #antiphospholipidsyndrome #dailygirlsfeed #pursuepretty #petitejoys #chronicillness #butyoudontlooksick #promocode #influencermarketing #spoonielife #iamthankful #liveunscripted #chronicloveclub #londonliving #followthejourney #missselfie #flashesofdelight #idaily #endosister #nottheendome
💟 Have you heard of Fibromyalgia? _ FMS is estimated to affect 3-6% of the population and causes wide spread pain all over the body and extreme fatigue. _ After having been diagnosed with multiple chronic illnesses, it is sometimes hard to differentiate the pain between them all, but I think I can really tell when extreme fatigue takes over due to FMS. _ What do you do to relieve your FMS symptoms, especially for chronic fatigue? I’m suffering quite badly with this today and finding it hard to move my arms and legs because of the stiffness and how weak I feel. It’s hard to explain, but it almost feels like my body has been drained of all it’s blood and nothing is being pumped around my body. My muscles and bones feel weak and stiff and leading to tension headaches. _ Purple @awarecauses necklaces also raise awareness for Fibromyalgia/FMS. Get 10% off any jewellery with my promo code: iamsarahmac 10% of proceeds go to a charity related to the cause you have bought a necklace for. 💜 _ Hope you are all okay and feeling much better than I am today! S. X _ #awarecauses  #fibromyalgia  #fms  #chronicfatigue  #invisibleillness  #endometriosis  #lupus  #autoimmune  #antiphospholipidsyndrome  #dailygirlsfeed  #pursuepretty  #petitejoys  #chronicillness  #butyoudontlooksick  #promocode  #influencermarketing  #spoonielife  #iamthankful  #liveunscripted  #chronicloveclub  #londonliving  #followthejourney  #missselfie  #flashesofdelight  #idaily  #endosister  #nottheendome 
Rest...😴|| I learned pre transplant that rest and listening to my body was 100% important. Most of my days pre transplant on the transplant list were stuck in a hospital 🏥 or at home in bed🛏. Once I got my transplant, I didn’t want anything to do with my bed. My feelings were that it was for sleeping at night and nothing else now that I had new lungs, new life. Even though I had this new outlook on life, I needed to remember I still have CF, I still have a major life threatening disease that needs some nurturing. I still needed to rest no matter what my energy level was. I needed to take a load off once a day to just chill.
—
A lot of people think they are invincible once they get new lungs and don’t seem to take time to rest. The body has gone through a major surgery and it still needs time to heal. Even if you seem okay, your body needs to be taken care of by taking time for a nap or laying down and watching a show or movie. I have taken this to heart and always take time to lay down and give my body a break.
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I have always had a bed that moves the head and feet up and down, like a hospital bed except a lot more comfy! Lol This has helped me throughout my life. I used to sleep with 6-8 pillows and Once I got this bed, I was down to one. After transplant it still helps me with breathing, post nasal drip, and since I had it all my life, it’s a habit of how I sleep now! I would definitely recommend getting a bed like this if you have a breathing issue!
—
What do you do to rest your body???🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️
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❌⭕️❌⭕️ Tiff
Rest...😴|| I learned pre transplant that rest and listening to my body was 100% important. Most of my days pre transplant on the transplant list were stuck in a hospital 🏥 or at home in bed🛏. Once I got my transplant, I didn’t want anything to do with my bed. My feelings were that it was for sleeping at night and nothing else now that I had new lungs, new life. Even though I had this new outlook on life, I needed to remember I still have CF, I still have a major life threatening disease that needs some nurturing. I still needed to rest no matter what my energy level was. I needed to take a load off once a day to just chill. — A lot of people think they are invincible once they get new lungs and don’t seem to take time to rest. The body has gone through a major surgery and it still needs time to heal. Even if you seem okay, your body needs to be taken care of by taking time for a nap or laying down and watching a show or movie. I have taken this to heart and always take time to lay down and give my body a break. — I have always had a bed that moves the head and feet up and down, like a hospital bed except a lot more comfy! Lol This has helped me throughout my life. I used to sleep with 6-8 pillows and Once I got this bed, I was down to one. After transplant it still helps me with breathing, post nasal drip, and since I had it all my life, it’s a habit of how I sleep now! I would definitely recommend getting a bed like this if you have a breathing issue! — What do you do to rest your body???🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️ — ❌⭕️❌⭕️ Tiff
My mama came to visit, help with the house, fix supper, and then took me and Jonah for a walk in my chair. She picked these flowers for Jonah to give me on our walk. Always thinking of the big and little things to serve and care for others. Her and these flowers are like sunshine, one of my favorite things.☀💚 #lymedisease #borrelia #babesia #rickettsia #bartonella #coinfections #mononucleosis #epsteinbarr #leakygut #malabsorption #gutdysbiosis #candida #healing #malnourished #vaginismus #trauma #ebv #anemia #gerd #hiatalhernia #adrenalfatigue #chronicloveclub #parasites #medicalmystery #chronicfatigue #chroniclyme #lymewarrior
My mama came to visit, help with the house, fix supper, and then took me and Jonah for a walk in my chair. She picked these flowers for Jonah to give me on our walk. Always thinking of the big and little things to serve and care for others. Her and these flowers are like sunshine, one of my favorite things.☀💚 #lymedisease  #borrelia  #babesia  #rickettsia  #bartonella  #coinfections  #mononucleosis  #epsteinbarr  #leakygut  #malabsorption  #gutdysbiosis  #candida  #healing  #malnourished  #vaginismus  #trauma  #ebv  #anemia  #gerd  #hiatalhernia  #adrenalfatigue  #chronicloveclub  #parasites  #medicalmystery  #chronicfatigue  #chroniclyme  #lymewarrior 
This photo is my morning in a nutshell.
⠀ 
On a day where it feels like my chronic illnesses are kicking my ass extra hard, it seems logical that I would share reflections on how they've impacted me negatively in other ways too. Sometimes instead of seeking a distraction, I find it good to leaning to the discomfort.
⠀ 
Yesterday during Yom Kippur, the holiest day in the Jewish religion, I spent a lot of time thinking about my behavior in the past year and how I can improve going forward. I'm not religious, but this felt meaningful and right to me. In this process, I realized that some of the ways I deal with my illnesses are definitely self-destructive.
⠀ 
I'm often too suspicious, angry and resentful. I make assumptions about people without basis in reality, but based on my own expectations and fears about things I read in the news and social media.
⠀ 
I'm often not comfortable with people, even those close to me. I'm too focused on what others think, not what I offer, so I get overly self-conscious. I'm also too scared of rejection, so I avoid being honest and speaking my mind politely, making the interaction less authentic.
⠀ 
I speak without thinking to fill silence, so I can soothe my anxiety. I obsess over small details without focusing on the bigger picture. I could keep going, but perhaps on another day.
⠀ 
I'm definitely not like this 24/7 and I do think I'm a kind, empathetic, intelligent, adventurous, passionate and ambitious person. But these are definitely behaviors that have become a pattern. So... what do I do now?
⠀ 
I think engaging in regular self-reflection will be useful, so I'm glad that I've started therapy again. I think just moving a little slower and more mindfully will be the key. And also approaching relationships with more open-mindedness and joy, rather than constantly being afraid that they will all crumble down.
⠀ 
Can you relate to any of this? 💜
This photo is my morning in a nutshell. ⠀ On a day where it feels like my chronic illnesses are kicking my ass extra hard, it seems logical that I would share reflections on how they've impacted me negatively in other ways too. Sometimes instead of seeking a distraction, I find it good to leaning to the discomfort. ⠀ Yesterday during Yom Kippur, the holiest day in the Jewish religion, I spent a lot of time thinking about my behavior in the past year and how I can improve going forward. I'm not religious, but this felt meaningful and right to me. In this process, I realized that some of the ways I deal with my illnesses are definitely self-destructive. ⠀ I'm often too suspicious, angry and resentful. I make assumptions about people without basis in reality, but based on my own expectations and fears about things I read in the news and social media. ⠀ I'm often not comfortable with people, even those close to me. I'm too focused on what others think, not what I offer, so I get overly self-conscious. I'm also too scared of rejection, so I avoid being honest and speaking my mind politely, making the interaction less authentic. ⠀ I speak without thinking to fill silence, so I can soothe my anxiety. I obsess over small details without focusing on the bigger picture. I could keep going, but perhaps on another day. ⠀ I'm definitely not like this 24/7 and I do think I'm a kind, empathetic, intelligent, adventurous, passionate and ambitious person. But these are definitely behaviors that have become a pattern. So... what do I do now? ⠀ I think engaging in regular self-reflection will be useful, so I'm glad that I've started therapy again. I think just moving a little slower and more mindfully will be the key. And also approaching relationships with more open-mindedness and joy, rather than constantly being afraid that they will all crumble down. ⠀ Can you relate to any of this? 💜
Thank you for keeping up your fight, even if you don’t have a choice 💛 Just a reminder that you’re pretty awesome. • 📷: @joshuafooo #chronicloveclub
Thank you for keeping up your fight, even if you don’t have a choice 💛 Just a reminder that you’re pretty awesome. • 📷: @joshuafooo #chronicloveclub 
Strange as it may seem, I still hope for the best, even though the best, like an interesting piece of mail, so rarely arrives, and even when it does it can be lost so easily. // Lemony Snicket⁣
⁣
✱ ✱ ✱⁣
⁣
I’ve really been struggling with my mental health the most so far throughout this journey. It is difficult and gut wrenching to have a group of specialists all throwing different options of what the diagnosis might be at me when all I want to know is the answer. As hopeless as I have felt this week I know this is a temporary emotion and I’ll be able to handle all the ups and downs. ⁣
⁣
✱ ✱ ✱⁣
⁣
How have you guys managed to cope with being undiagnosed and the journey to getting answers? ⁣
⁣
✱ ✱ ✱⁣
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#undiagnosed #eds #ehlersdanlos #genetictesting #mitochondrialdisease #gastroparesis #gp #chronicnausea #sibo #chronicpain #vonwillebrand #vonwillebranddisease #osa #sleepapnea #asthma #endometriosis #endo #pcos #hormoneimbalance #raynauds #spoonie #spoonielife #invisibleillness #chronicillness #chronicallyfabulous #chronicloveclub
Strange as it may seem, I still hope for the best, even though the best, like an interesting piece of mail, so rarely arrives, and even when it does it can be lost so easily. // Lemony Snicket⁣ ⁣ ✱ ✱ ✱⁣ ⁣ I’ve really been struggling with my mental health the most so far throughout this journey. It is difficult and gut wrenching to have a group of specialists all throwing different options of what the diagnosis might be at me when all I want to know is the answer. As hopeless as I have felt this week I know this is a temporary emotion and I’ll be able to handle all the ups and downs. ⁣ ⁣ ✱ ✱ ✱⁣ ⁣ How have you guys managed to cope with being undiagnosed and the journey to getting answers? ⁣ ⁣ ✱ ✱ ✱⁣ ⁣ #undiagnosed  #eds  #ehlersdanlos  #genetictesting  #mitochondrialdisease  #gastroparesis  #gp  #chronicnausea  #sibo  #chronicpain  #vonwillebrand  #vonwillebranddisease  #osa  #sleepapnea  #asthma  #endometriosis  #endo  #pcos  #hormoneimbalance  #raynauds  #spoonie  #spoonielife  #invisibleillness  #chronicillness  #chronicallyfabulous  #chronicloveclub 
"All I ever wanted was sunshine and honesty, Highlights to wanna repeat," the line of a song called End Credits (by EDEN & Leah Kelly) which was playing as I was picking this photo out. I've been living on highlights, on repeats, this past week. It's hard not to when they are often so few & far between. It's important to take the tiny moments and make your own sunshine when isolated (as I am by illness) but sometimes you need to cut yourself some slack and say "Today makes me miserable, I'm going to live in last week for a little while." Because every emotion deserves some credit for the sake of balance if nothing else. I'm working through a lot at the moment and even though it feels like pointless overthinking at times I know it's important for the future. A future I want to fill with sunshine and honesty. (Even when that honesty involves pointing out a load of storm clouds and checking we have enough umbrellas).
~

Photo description: My left hand holding a little cup of tea resting on a pale pink quilt. I'm wearing a cosy cream cable knit jumper. ~
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#Spoonie #ChronicIllness #InvisibleIllness #SickChick #MEcfs #MeAwareness #SpoonieBlog #hypermobility #ChronicPain #ChronicLoveClub #ChronicLoveClubUK #RetroFashion #1990sVintage #tea #IveForgottenHowToUseHashtagsUnrelatedToChronicIllnessSendHelpThankYouX
"All I ever wanted was sunshine and honesty, Highlights to wanna repeat," the line of a song called End Credits (by EDEN & Leah Kelly) which was playing as I was picking this photo out. I've been living on highlights, on repeats, this past week. It's hard not to when they are often so few & far between. It's important to take the tiny moments and make your own sunshine when isolated (as I am by illness) but sometimes you need to cut yourself some slack and say "Today makes me miserable, I'm going to live in last week for a little while." Because every emotion deserves some credit for the sake of balance if nothing else. I'm working through a lot at the moment and even though it feels like pointless overthinking at times I know it's important for the future. A future I want to fill with sunshine and honesty. (Even when that honesty involves pointing out a load of storm clouds and checking we have enough umbrellas). ~ Photo description: My left hand holding a little cup of tea resting on a pale pink quilt. I'm wearing a cosy cream cable knit jumper. ~ ~ ~ #Spoonie  #ChronicIllness  #InvisibleIllness  #SickChick  #MEcfs  #MeAwareness  #SpoonieBlog  #hypermobility  #ChronicPain  #ChronicLoveClub  #ChronicLoveClubUK  #RetroFashion  #1990sVintage  #tea  #IveForgottenHowToUseHashtagsUnrelatedToChronicIllnessSendHelpThankYouX 
Relatable 🙋🏼‍♀️ #itme
Relatable 🙋🏼‍♀️ #itme 
#Repost @my_ileostomy_life with @get_repost
・・・
Hi, since 6 weeks I’m changing my lifestyle with the help of @mykillerbodymotivation and I’ve lost 13 pound in those 6 weeks. 
I’m feeling healthier,  my body is changing, getting stronger and my ileostomy is behaving pretty good.  Although I find it super scary to be so vulnerable I wanted to share this picture with you to show that despite of having a ileostomy you’re still beautiful in your own perfect way. ❤️ #nocolonstillrollin #ileostoma #ileostomy #ileostomylife #ileostomygirl #girl #ileostomyfit #crohns #crohnsdisease #crohnswarrior #ibd #ibdawareness #ibdwarrior #chronicillness #chronicfatigue #chronicpain #staypositive #stillbreathing #positivevibes #positivethinking #kickass #chronicloveclub #ibdsuperheroes
#Repost  @my_ileostomy_life with @get_repost ・・・ Hi, since 6 weeks I’m changing my lifestyle with the help of @mykillerbodymotivation and I’ve lost 13 pound in those 6 weeks. I’m feeling healthier, my body is changing, getting stronger and my ileostomy is behaving pretty good. Although I find it super scary to be so vulnerable I wanted to share this picture with you to show that despite of having a ileostomy you’re still beautiful in your own perfect way. ❤️ #nocolonstillrollin  #ileostoma  #ileostomy  #ileostomylife  #ileostomygirl  #girl  #ileostomyfit  #crohns  #crohnsdisease  #crohnswarrior  #ibd  #ibdawareness  #ibdwarrior  #chronicillness  #chronicfatigue  #chronicpain  #staypositive  #stillbreathing  #positivevibes  #positivethinking  #kickass  #chronicloveclub  #ibdsuperheroes 
Hi, since 6 weeks I’m changing my lifestyle with the help of @mykillerbodymotivation 
I’m feeling healthier,  my body is changing, getting stronger and my ileostomy is behaving pretty good.  Although I find it super scary to be so vulnerable I wanted to share this picture with you to show that despite of having a ileostomy you’re still beautiful in your own perfect way. ❤️ #nocolonstillrollin #ileostoma #ileostomy #ileostomylife #ileostomygirl #girl #ileostomyfit #crohns #crohnsdisease #crohnswarrior #ibd #ibdawareness #ibdwarrior #chronicillness #chronicfatigue #chronicpain #staypositive #stillbreathing #positivevibes #positivethinking #kickass #chronicloveclub #ibdsuperheroes
Hi, since 6 weeks I’m changing my lifestyle with the help of @mykillerbodymotivation I’m feeling healthier, my body is changing, getting stronger and my ileostomy is behaving pretty good. Although I find it super scary to be so vulnerable I wanted to share this picture with you to show that despite of having a ileostomy you’re still beautiful in your own perfect way. ❤️ #nocolonstillrollin  #ileostoma  #ileostomy  #ileostomylife  #ileostomygirl  #girl  #ileostomyfit  #crohns  #crohnsdisease  #crohnswarrior  #ibd  #ibdawareness  #ibdwarrior  #chronicillness  #chronicfatigue  #chronicpain  #staypositive  #stillbreathing  #positivevibes  #positivethinking  #kickass  #chronicloveclub  #ibdsuperheroes 
“Work on being in love with the person in the mirror who has been through so much but is still standing.” 💕
•
Recently I was thinking about the last 5 years of my life. I spent so much of that time truly hating myself. I was miserable with my weight. I was miserable with my looks. I was miserable with my dating life. I was miserable with my job. On top of all this misery I was introduced to my good friend Lupus. 😣
•
I was miserable and scared and lonely and lost. I would be lying if I said I’d never considered what this world would be like if I wasn’t in it. I spent a few years dragging myself through my lowest point. I wondered why others didn’t want to be around me. As I said, I hated myself. 😬
•
Sometime around this past December - not sure exactly when - I woke up and realized how detrimental this was to my overall health. I started my path towards healing. My first step was to stop letting little things I can’t help get to me. After that I started working out again  and eating better. Once I had accomplished those, I set out to make plans for this year that would truly make my heart happy. Fun trips and my amazing move have made me feel so full of life. I look in the mirror now and I see a girl who has fought a battle and is still standing. The battle will continue but I’ve armed myself with the tools necessary to fight back. When I look in the mirror I see a person that I love and I’m excited to see where her journey will take her in the future.💁🏼‍♀️
•
This picture says it all for me. I was going out in LA which can be an intimidating and superficial city. I threw on a $20 Kohl’s dress and some Target boots and I kept my head up all night. Not once did I care if people were saying anything and I had so much fun. Don’t ever let yourself be your own worst enemy. Love yourself first. 💜
“Work on being in love with the person in the mirror who has been through so much but is still standing.” 💕 • Recently I was thinking about the last 5 years of my life. I spent so much of that time truly hating myself. I was miserable with my weight. I was miserable with my looks. I was miserable with my dating life. I was miserable with my job. On top of all this misery I was introduced to my good friend Lupus. 😣 • I was miserable and scared and lonely and lost. I would be lying if I said I’d never considered what this world would be like if I wasn’t in it. I spent a few years dragging myself through my lowest point. I wondered why others didn’t want to be around me. As I said, I hated myself. 😬 • Sometime around this past December - not sure exactly when - I woke up and realized how detrimental this was to my overall health. I started my path towards healing. My first step was to stop letting little things I can’t help get to me. After that I started working out again and eating better. Once I had accomplished those, I set out to make plans for this year that would truly make my heart happy. Fun trips and my amazing move have made me feel so full of life. I look in the mirror now and I see a girl who has fought a battle and is still standing. The battle will continue but I’ve armed myself with the tools necessary to fight back. When I look in the mirror I see a person that I love and I’m excited to see where her journey will take her in the future.💁🏼‍♀️ • This picture says it all for me. I was going out in LA which can be an intimidating and superficial city. I threw on a $20 Kohl’s dress and some Target boots and I kept my head up all night. Not once did I care if people were saying anything and I had so much fun. Don’t ever let yourself be your own worst enemy. Love yourself first. 💜
🥗 How does diet affect your endo symptoms?
_
Head over to @endometriosisnutrition, the official nutrition support page for @womenwithendometriosis where I post endo friendly food inspo, recipes and quotes to keep you going!
_
If you are just starting out and want to see if changing up your diet makes a difference to your endo symptoms, initially try to cut out gluten, dairy and soy as these are the main irritants for endometriosis.
Everyone is different so what works for someone else might not work for you and vice versa.
Accountability is important, maybe try keeping a food diary for a month and really try to commit to it and see what your symptoms are with different types of food.
_
Let me know how you get on!
_
This yummy box is from @foodilic which serves tasty vegan, vegetarian and gluten free options!
Find Foodillic in London and Brighton. 🍅
S. X
_
#foodillic #glutenfree #dairyfree #endodiet #foodinspo #endofriendly #eatyourgreens #tasty #putney #iamthankful #chronicloveclub #autoimmune #fibromyalgia #invisibleillness #liveunscripted #desklunch #lupus #butyoudontlooksick #myendonutrition #dailygirlsfeed #selfhealing #eatguide #londonliving #petitejoys #spoonielife #followthejourney #nottheendome
🥗 How does diet affect your endo symptoms? _ Head over to @endometriosisnutrition, the official nutrition support page for @womenwithendometriosis where I post endo friendly food inspo, recipes and quotes to keep you going! _ If you are just starting out and want to see if changing up your diet makes a difference to your endo symptoms, initially try to cut out gluten, dairy and soy as these are the main irritants for endometriosis. Everyone is different so what works for someone else might not work for you and vice versa. Accountability is important, maybe try keeping a food diary for a month and really try to commit to it and see what your symptoms are with different types of food. _ Let me know how you get on! _ This yummy box is from @foodilic which serves tasty vegan, vegetarian and gluten free options! Find Foodillic in London and Brighton. 🍅 S. X _ #foodillic  #glutenfree  #dairyfree  #endodiet  #foodinspo  #endofriendly  #eatyourgreens  #tasty  #putney  #iamthankful  #chronicloveclub  #autoimmune  #fibromyalgia  #invisibleillness  #liveunscripted  #desklunch  #lupus  #butyoudontlooksick  #myendonutrition  #dailygirlsfeed  #selfhealing  #eatguide  #londonliving  #petitejoys  #spoonielife  #followthejourney  #nottheendome 
🍤IBD & THE USE OF DIETARY TREATMENT.
🔹
🍢Some people with IBD may be prescribed exclusive enteral nutrition (a special liquid-only diet), usually for 2-8 weeks.
🔹
🍲People on this diet do not eat ordinary food or drink because the liquid diet provides them with all the nutrients they need.
🔹
🍸Not everyone likes the taste of these specialised feeds, but they do come in a range of flavours.
🔹
🍩Some people have found that taking the liquid ice-cold or through a straw makes it easier to drink. An alternative may be to take the feed overnight through a nasogastric tube (a fine tube passed through the nose  down into the stomach).
🔹
🍪It is commonly used in children because it can improve growth by providing easily digested nutrients.
🔹
🍞It may also make it less likely that steroids are needed, by helping to ‘rest’ the bowel and allow it to heal.
🔹 🍦Adults are less likely to need exclusive enteral nutrition, but this can be an option for treating flares. Diets such as this are usually supervised by a dietitian.
🔹
🍥Some people may find it helpful to have supplemental drinks alongside normal food, in order to obtain more nutrients. This may also be useful for children.
🔹
🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/crohns-disease
_______________
Instagram: @theresearchrad 
Facebook.com/theresearchrad 
Twitter.com/theresearchrad 
YouTube.com/theresearchrad 
www.theresearchrad.com
🔹
#radiography #radiographer #theresearchrad #theresearchradtv #thecrohnchronicles #thegrumblinggut #crohnsdisease #crohnsfighter #invisibleillness #chronicloveclub #instacrohns #foodporn #food #healthylifestyle #fooddiary #enteralnutrition #fortisip #complan #dieting #ibdawareness #dietitian #foodblogger #foodasmedicine #dietplan #nutrition #nutritionist #breakfast #chocolate #foodforcrohns #medicine
🍤IBD & THE USE OF DIETARY TREATMENT. 🔹 🍢Some people with IBD may be prescribed exclusive enteral nutrition (a special liquid-only diet), usually for 2-8 weeks. 🔹 🍲People on this diet do not eat ordinary food or drink because the liquid diet provides them with all the nutrients they need. 🔹 🍸Not everyone likes the taste of these specialised feeds, but they do come in a range of flavours. 🔹 🍩Some people have found that taking the liquid ice-cold or through a straw makes it easier to drink. An alternative may be to take the feed overnight through a nasogastric tube (a fine tube passed through the nose  down into the stomach). 🔹 🍪It is commonly used in children because it can improve growth by providing easily digested nutrients. 🔹 🍞It may also make it less likely that steroids are needed, by helping to ‘rest’ the bowel and allow it to heal. 🔹 🍦Adults are less likely to need exclusive enteral nutrition, but this can be an option for treating flares. Diets such as this are usually supervised by a dietitian. 🔹 🍥Some people may find it helpful to have supplemental drinks alongside normal food, in order to obtain more nutrients. This may also be useful for children. 🔹 🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/crohns-disease _______________ Instagram: @theresearchrad Facebook.com/theresearchrad Twitter.com/theresearchrad YouTube.com/theresearchrad www.theresearchrad.com 🔹 #radiography  #radiographer  #theresearchrad  #theresearchradtv  #thecrohnchronicles  #thegrumblinggut  #crohnsdisease  #crohnsfighter  #invisibleillness  #chronicloveclub  #instacrohns  #foodporn  #food  #healthylifestyle  #fooddiary  #enteralnutrition  #fortisip  #complan  #dieting  #ibdawareness  #dietitian  #foodblogger  #foodasmedicine  #dietplan  #nutrition  #nutritionist  #breakfast  #chocolate  #foodforcrohns  #medicine 
High waist + High hopes 😆
High waist + High hopes 😆
Appointment anxiety ☕️ I have dealt with appointment anxiety from time to time but it is hitting hard right now. 
It used to only be directly before or during the appointment. But tonight I am already starting to feel the anxiety for the appointment on Friday. 
It is hard to describe what it feels like. It feels like I am just going to start crying at any second all the time. Or this sounds weird but it makes me feel like I want to jump out of my skin. 
Appointment anxiety is different than regular anxiety because with regular anxiety there is a possibility of the thing I am afraid of won’t happen but with appointment anxiety it is going to happen. 
Well is more likely to happen. The part that for sure will happen is the appointment and the parts that might not happen are all the anxieties about the appointment. 
What if it is a “bad” appointment?

What if I can’t express what I need to?

What if the doctor can’t help?

What if nothing happens?

Really I am just afraid of what is going to happen during the appointment. 
Appointment anxiety always leads to me appearing distracted or fidgety during the appointment. Then I fear appearing rude and like I don’t want to be there. 
I have been given good advice to try journaling and music to ease my nerves. 
Journaling is good because it can be a way to get all the worries out on paper, but for me it is sometimes a problem because it makes me all wound up and sometimes makes the anxiety boil over and turns it into a meltdown. 
Music or really any art is good as well and can also double as a distraction. 
Any other recommendations are greatly welcomed. 
Also, does anyone want to be spoonie friends? (DM me)

I have recently decided I want to make more  connections. 😘
Appointment anxiety ☕️ I have dealt with appointment anxiety from time to time but it is hitting hard right now. It used to only be directly before or during the appointment. But tonight I am already starting to feel the anxiety for the appointment on Friday. It is hard to describe what it feels like. It feels like I am just going to start crying at any second all the time. Or this sounds weird but it makes me feel like I want to jump out of my skin. Appointment anxiety is different than regular anxiety because with regular anxiety there is a possibility of the thing I am afraid of won’t happen but with appointment anxiety it is going to happen. Well is more likely to happen. The part that for sure will happen is the appointment and the parts that might not happen are all the anxieties about the appointment. What if it is a “bad” appointment? What if I can’t express what I need to? What if the doctor can’t help? What if nothing happens? Really I am just afraid of what is going to happen during the appointment. Appointment anxiety always leads to me appearing distracted or fidgety during the appointment. Then I fear appearing rude and like I don’t want to be there. I have been given good advice to try journaling and music to ease my nerves. Journaling is good because it can be a way to get all the worries out on paper, but for me it is sometimes a problem because it makes me all wound up and sometimes makes the anxiety boil over and turns it into a meltdown. Music or really any art is good as well and can also double as a distraction. Any other recommendations are greatly welcomed. Also, does anyone want to be spoonie friends? (DM me) I have recently decided I want to make more connections. 😘
This little video was from a year ago today. I was fighting a cold and still managed to go take pictures in the woods. •
Nothings really changing which lately has felt suffocating. I see my Rheumatologist in a week and hopefully get a new game plan going.
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.#witchesofinstagram #wicca #vintagevamp #vintagegoth #gothic #1940s #1940sfashion #pinupalternative #gothgirl #vampire #witch #halloween #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #invisibleillness #butyoudontlooksick #pots #potsie #dysautonomia #spoonie #chronicillnesswarrior #peoplehopetribe #gastroparesis #chronicpain #chronicfatigue #chronicallyfabulous #chronicloveclub
This little video was from a year ago today. I was fighting a cold and still managed to go take pictures in the woods. • Nothings really changing which lately has felt suffocating. I see my Rheumatologist in a week and hopefully get a new game plan going. . . .#witchesofinstagram  #wicca  #vintagevamp  #vintagegoth  #gothic  #1940s  #1940sfashion  #pinupalternative  #gothgirl  #vampire  #witch  #halloween  #posturalorthostatictachycardiasyndrome  #chronicallyill  #chronicillness  #invisibleillness  #butyoudontlooksick  #pots  #potsie  #dysautonomia  #spoonie  #chronicillnesswarrior  #peoplehopetribe  #gastroparesis  #chronicpain  #chronicfatigue  #chronicallyfabulous  #chronicloveclub 
I ended up coming to the ER this morning per my doctor’s orders because the abdominal pain got so severe. They gave me some pain meds which did nothing and then gave me something stronger and it helped take the edge off—it went from a 10 to about a 7. The pain also comes and goes, which is how I’m writing this. I’ve put my phone down at least 10 times because the pain gets severe. 😦
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They decided to admit me so they can manage my pain while they try to figure out what’s going on. Because it’s Yom Kippur, my GI doctor wasn’t available today, but his PA and partner were. They said that he’ll see me tomorrow morning and he might want to scope me with an endoscopy and/or colonoscopy. The PA wants me to do a bowel prep to make sure there’s not something stuck that’s causing an issue. I’m just desperate for pain relief and hopefully answers. Of course I had an important appt tomorrow and was supposed to have my spine CT today, but they’ll just have to wait. 🙁 Super bummed to be back in the hospital, but I know this is where I need to be. Crossing my fingers they can figure this out quickly so I can get home soon.
I ended up coming to the ER this morning per my doctor’s orders because the abdominal pain got so severe. They gave me some pain meds which did nothing and then gave me something stronger and it helped take the edge off—it went from a 10 to about a 7. The pain also comes and goes, which is how I’m writing this. I’ve put my phone down at least 10 times because the pain gets severe. 😦 - They decided to admit me so they can manage my pain while they try to figure out what’s going on. Because it’s Yom Kippur, my GI doctor wasn’t available today, but his PA and partner were. They said that he’ll see me tomorrow morning and he might want to scope me with an endoscopy and/or colonoscopy. The PA wants me to do a bowel prep to make sure there’s not something stuck that’s causing an issue. I’m just desperate for pain relief and hopefully answers. Of course I had an important appt tomorrow and was supposed to have my spine CT today, but they’ll just have to wait. 🙁 Super bummed to be back in the hospital, but I know this is where I need to be. Crossing my fingers they can figure this out quickly so I can get home soon.
Somebody messaged me today asking if I experienced “chronic pain,” and I responded, “haha, uhh yeah why..?” I assumed they were trying to sell me something, but he responded “You look happy and fit.” Am I mad or annoyed by this man’s response, absolutely not🙅🏽‍♀️, but I do want to explain something. I am still very new to feeling sick all the time, so I struggle with not wanting to offend people. I know others have more severe symptoms than I do, and I never want others to think I’m ungrateful. With that being said, I’ll explain my symptoms for anybody judging me based on the fact hat I look “happy and fit.” 🌸 I have constant headaches, brain fog/trouble speaking, sensory overload to touch, pelvic pain and spasms, frequent bathroom trips in the middle of the night, spleen pain/enlargement, fatigue (falling asleep during the day), insomnia, muscle spasms, joint pain and popping out (trouble walking), muscle cramps, back pain to the point where I have trouble walking, nerve pain, heel pain, and sensitivity to light. My doctors and blood work all say lupus, and I see the specialist in a couple of weeks to figure out where to go from here. (Still getting tested for lyme to make sure!) I have better days and worse days. I try to stay positive and enjoy the days of both and do what I can on the better days. On my worst days I sit with baths, use my heating pad/heating chair, nap, lay in the dark, etc haha. So if you were wondering why I don’t look sick, or what I do on bad days, there ya go! #chronicillness #chronicpain #lupus #beforewebitethedust #plantbased #chronicloveclub @chronicloveclub #maybelyme #lymeadvise #autoimmunedisease #autoimmune
Somebody messaged me today asking if I experienced “chronic pain,” and I responded, “haha, uhh yeah why..?” I assumed they were trying to sell me something, but he responded “You look happy and fit.” Am I mad or annoyed by this man’s response, absolutely not🙅🏽‍♀️, but I do want to explain something. I am still very new to feeling sick all the time, so I struggle with not wanting to offend people. I know others have more severe symptoms than I do, and I never want others to think I’m ungrateful. With that being said, I’ll explain my symptoms for anybody judging me based on the fact hat I look “happy and fit.” 🌸 I have constant headaches, brain fog/trouble speaking, sensory overload to touch, pelvic pain and spasms, frequent bathroom trips in the middle of the night, spleen pain/enlargement, fatigue (falling asleep during the day), insomnia, muscle spasms, joint pain and popping out (trouble walking), muscle cramps, back pain to the point where I have trouble walking, nerve pain, heel pain, and sensitivity to light. My doctors and blood work all say lupus, and I see the specialist in a couple of weeks to figure out where to go from here. (Still getting tested for lyme to make sure!) I have better days and worse days. I try to stay positive and enjoy the days of both and do what I can on the better days. On my worst days I sit with baths, use my heating pad/heating chair, nap, lay in the dark, etc haha. So if you were wondering why I don’t look sick, or what I do on bad days, there ya go! #chronicillness  #chronicpain  #lupus  #beforewebitethedust  #plantbased  #chronicloveclub  @chronicloveclub #maybelyme  #lymeadvise  #autoimmunedisease  #autoimmune 
I love capturing sunsets because they always remind me that tomorrow is another day and another chance to work towards your goals and dreams. 🌅☀️💜
I love capturing sunsets because they always remind me that tomorrow is another day and another chance to work towards your goals and dreams. 🌅☀️💜
CLC MEMBER FEATURE: Hi, my name is Kristen! In March 2016, I was diagnosed with ulcerative colitis. I was placed on all of the “tried-and-true” medications to control IBD, including the biologic Remicade, but during only my third infusion I had a life-threatening allergic reaction. Before I could start another biologic, I was diagnosed with Clostridium Difficile (C. Diff.), a bacterial infection that also attacks the colon. Between my severe ulcerative colitis and antibiotic-resistant C. Diff., I very quickly became critically ill. In August 2016, after dropping to only 72 lbs., I went had a total colectomy to save my life.
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I opted for the three-step j-pouch series and underwent my second surgery in March 2017. Unfortunately, due to an adhesion close to my stoma, I went through 2 months of continuous partial to complete blockages. My third surgery to connect my j-pouch and remove my ileostomy was moved up to May 2017.
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After only 3 months with my j-pouch, I began experiencing all of the symptoms I had when I had active UC. I was not responding to antibiotics or probiotics again and it was at this point that I made the decision with my surgeon to remove my j-pouch and create a permanent ileostomy. My original diagnosis of UC has since been changed to Crohn’s Colitis.
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Inflammatory Bowel Disease changed my life completely. That is why I will not stop fighting for a cure, raising awareness, and breaking the stigmas that surround these diseases. If you are going through a battle right now, please know that you are NEVER alone in your fight and you are so much stronger than you could ever imagine. Keep fighting!
#chronicloveclub
CLC MEMBER FEATURE: Hi, my name is Kristen! In March 2016, I was diagnosed with ulcerative colitis. I was placed on all of the “tried-and-true” medications to control IBD, including the biologic Remicade, but during only my third infusion I had a life-threatening allergic reaction. Before I could start another biologic, I was diagnosed with Clostridium Difficile (C. Diff.), a bacterial infection that also attacks the colon. Between my severe ulcerative colitis and antibiotic-resistant C. Diff., I very quickly became critically ill. In August 2016, after dropping to only 72 lbs., I went had a total colectomy to save my life. • I opted for the three-step j-pouch series and underwent my second surgery in March 2017. Unfortunately, due to an adhesion close to my stoma, I went through 2 months of continuous partial to complete blockages. My third surgery to connect my j-pouch and remove my ileostomy was moved up to May 2017. • After only 3 months with my j-pouch, I began experiencing all of the symptoms I had when I had active UC. I was not responding to antibiotics or probiotics again and it was at this point that I made the decision with my surgeon to remove my j-pouch and create a permanent ileostomy. My original diagnosis of UC has since been changed to Crohn’s Colitis. • Inflammatory Bowel Disease changed my life completely. That is why I will not stop fighting for a cure, raising awareness, and breaking the stigmas that surround these diseases. If you are going through a battle right now, please know that you are NEVER alone in your fight and you are so much stronger than you could ever imagine. Keep fighting! #chronicloveclub 
A tip for you- this summer, my ND, suggested Kratom as a way to help with pain. It is an herb from Asia and a part of the coffee family. It is not addictive, an opioid, or dangerous. She said that if more people knew about it, it could solve the opioid issue in our country.  One source I read said that it is no more likely than coffee to lead to abuse. It can be taken different ways, but I measure my dose out in powder form. The powder comes from the leaf of the tree. Different strains produce different effects- pain relief, mood boosting, sedation, stimulating, etc. I take smaller doses of two different strains for the right effect for my body. I only take it once a day bc I don't notice any help the second time, but many people use it twice a day. It is legal in most states and countries so you will have to do your research. We all know about controversy and what the media says when it comes to safe alternatives that actually help. I wish I had known about it sooner because it does usually make a difference for me on the days I take it. My Dr only mentioned it this summer bc she was concerned about the safety of it while breastfeeding and I tried to continue breastfeeding my baby as long as my weight and system would allow. When I had to finally stop(😢) , I gave Kratom a try. I suggest looking into this if you have chronic pain, asking your Lyme Dr, and researching the best thing for you. Many sources will say that the green strain is stimulating, but my Dr and I find it more sedating than red. Some sources she sent me to research and purchase from are - americankratom.org kratomtherapy.com kraromspot.com kratoma.com ilovekratom.com I'm not an expert but hope this can be useful to someone. #jessiefightslyme ☀💚 #lymedisease #borrelia #babesia #rickettsia #bartonella #coinfections #mononucleosis #epsteinbarr #leakygut #malabsorption #gutdysbiosis #candida #healing #malnourished #vaginismus #trauma #ebv #anemia #gerd #hiatalhernia #adrenalfatigue #chronicloveclub #parasites #medicalmystery #chronicfatigue #chroniclyme #lymewarrior #kratom
A tip for you- this summer, my ND, suggested Kratom as a way to help with pain. It is an herb from Asia and a part of the coffee family. It is not addictive, an opioid, or dangerous. She said that if more people knew about it, it could solve the opioid issue in our country. One source I read said that it is no more likely than coffee to lead to abuse. It can be taken different ways, but I measure my dose out in powder form. The powder comes from the leaf of the tree. Different strains produce different effects- pain relief, mood boosting, sedation, stimulating, etc. I take smaller doses of two different strains for the right effect for my body. I only take it once a day bc I don't notice any help the second time, but many people use it twice a day. It is legal in most states and countries so you will have to do your research. We all know about controversy and what the media says when it comes to safe alternatives that actually help. I wish I had known about it sooner because it does usually make a difference for me on the days I take it. My Dr only mentioned it this summer bc she was concerned about the safety of it while breastfeeding and I tried to continue breastfeeding my baby as long as my weight and system would allow. When I had to finally stop(😢) , I gave Kratom a try. I suggest looking into this if you have chronic pain, asking your Lyme Dr, and researching the best thing for you. Many sources will say that the green strain is stimulating, but my Dr and I find it more sedating than red. Some sources she sent me to research and purchase from are - americankratom.org kratomtherapy.com kraromspot.com kratoma.com ilovekratom.com I'm not an expert but hope this can be useful to someone. #jessiefightslyme  ☀💚 #lymedisease  #borrelia  #babesia  #rickettsia  #bartonella  #coinfections  #mononucleosis  #epsteinbarr  #leakygut  #malabsorption  #gutdysbiosis  #candida  #healing  #malnourished  #vaginismus  #trauma  #ebv  #anemia  #gerd  #hiatalhernia  #adrenalfatigue  #chronicloveclub  #parasites  #medicalmystery  #chronicfatigue  #chroniclyme  #lymewarrior  #kratom 
Crab picking 🦀 is one of my FAVORITE things about summer. ☀️ We are a big seafood family. Even as a small child my brother and I would eat off the raw bar at restaurants. We grew up going to the Chesapeake Bay in southern Maryland and we would always FEAST. A lot of work for a little meat but it is more about the process and I have always enjoyed it!
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Now that summer is coming to an end, it’s getting into Oyster season. I used to LOVE raw oysters with hot sauce and a bit of lemon. Unfortunately, post transplant raw oysters are a big no, no. But I still eat them steamed! 😋💜
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Are you ready for fall?? I am! 🍂🍁
Crab picking 🦀 is one of my FAVORITE things about summer. ☀️ We are a big seafood family. Even as a small child my brother and I would eat off the raw bar at restaurants. We grew up going to the Chesapeake Bay in southern Maryland and we would always FEAST. A lot of work for a little meat but it is more about the process and I have always enjoyed it! . Now that summer is coming to an end, it’s getting into Oyster season. I used to LOVE raw oysters with hot sauce and a bit of lemon. Unfortunately, post transplant raw oysters are a big no, no. But I still eat them steamed! 😋💜 . Are you ready for fall?? I am! 🍂🍁
I always say this " I am a real person just like you living with diabetes" I'm 52 and have lived with this condition for 10 years. I struggle with lows and highs, burnout and sometimes find it hard to stay positive.
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When I reached out today to ask my tribe what they were struggling with the same things reared their heads.
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But here's the thing I want to do more than just 'manage' a life with diabetes.
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And I am guessing you might feel like that too.
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Seeing my diabetes diagnosis as a gift which became a path to awakening and transformation has been the catalyst for me to write my book and to keep creating yoga based offerings to inspire you...my tribe...
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So tell me what are YOU struggling with right now?
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How can I serve you?
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#diabetes #diabetic #typeonediabetic #typeonediabetes #diatribe  #diabetichealth  #type1 #type1diabetic #diabetics #diabeetus #diabeticgirl #diabeticfitness #diabeticliving #diabeticlife #diabetessupport #yoga #yogi #yogapose #mindbodygram #mbgram #doc #iamwellandgood #selfloveclub #chronicloveclub #healthylifestyle #yogafordiabetes #bodypositivity
I always say this " I am a real person just like you living with diabetes" I'm 52 and have lived with this condition for 10 years. I struggle with lows and highs, burnout and sometimes find it hard to stay positive. . When I reached out today to ask my tribe what they were struggling with the same things reared their heads. . But here's the thing I want to do more than just 'manage' a life with diabetes. . And I am guessing you might feel like that too. . Seeing my diabetes diagnosis as a gift which became a path to awakening and transformation has been the catalyst for me to write my book and to keep creating yoga based offerings to inspire you...my tribe... . So tell me what are YOU struggling with right now? . How can I serve you? . #diabetes  #diabetic  #typeonediabetic  #typeonediabetes  #diatribe  #diabetichealth  #type1  #type1diabetic  #diabetics  #diabeetus  #diabeticgirl  #diabeticfitness  #diabeticliving  #diabeticlife  #diabetessupport  #yoga  #yogi  #yogapose  #mindbodygram  #mbgram  #doc  #iamwellandgood  #selfloveclub  #chronicloveclub  #healthylifestyle  #yogafordiabetes  #bodypositivity 
"The greatest joys can be had in sharing perspectives & inspiration during sunset runs! When you run with passion & discipline; the possibilities are endless!"
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⭐4 days out from @cheyenne_marathon , ready to Cap off 2 Marathons, 54k+, & 50 Miler Races month. This is a September / 2018 106+ Races Journey for All Community(s) & how I live @beyondtype1daily . The RunCheweyRun journey is under the radar; the results, numbers, inspiration & AWARENESS are not! 💙🏁
* Tues Run Club 6pm @runnersroostaurora
* 🙏 @hokaoneone Gaviola Shoe Demo from @oohsnapbee
* @c3fit_usa Calf Sleeves 👍
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#hoka #hokaoneone #rundenver #T1D #t1dlookslikeme #RaiseAwareness #Diabetes #raceprep #cheyennemarathon #RunCheweyRun #runshots #livebeyond #beyondtype1 #Migraine #Dexcom #WarriorUp #wearenotwaiting #moremiles #runitfast #marathonmaniacs #halffanatics #c3fit #RunnersCommunity  #chronicloveclub #runspiration #monitorthebeat #runnerswanderlust #TypeOneRun #RunClub #powerfulmessage
"The greatest joys can be had in sharing perspectives & inspiration during sunset runs! When you run with passion & discipline; the possibilities are endless!" . . . ⭐4 days out from @cheyenne_marathon , ready to Cap off 2 Marathons, 54k+, & 50 Miler Races month. This is a September / 2018 106+ Races Journey for All Community(s) & how I live @beyondtype1daily . The RunCheweyRun journey is under the radar; the results, numbers, inspiration & AWARENESS are not! 💙🏁 * Tues Run Club 6pm @runnersroostaurora * 🙏 @hokaoneone Gaviola Shoe Demo from @oohsnapbee * @c3fit_usa Calf Sleeves 👍 . . . . . . #hoka  #hokaoneone  #rundenver  #T1D  #t1dlookslikeme  #RaiseAwareness  #Diabetes  #raceprep  #cheyennemarathon  #RunCheweyRun  #runshots  #livebeyond  #beyondtype1  #Migraine  #Dexcom  #WarriorUp  #wearenotwaiting  #moremiles  #runitfast  #marathonmaniacs  #halffanatics  #c3fit  #RunnersCommunity  #chronicloveclub  #runspiration  #monitorthebeat  #runnerswanderlust  #TypeOneRun  #RunClub  #powerfulmessage 
I mean. I can try and be “logical” all I want... My claustrophobic ass is freaking out and Valium is def gonna help me do this 😂... sitting outside on this beautiful day waiting for it to kick in before my MRI.
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Back in the day when I worked in an office or at a bakery... days off to get tests done = I wasn’t reliable. Or “there was always something with me”.
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I would just push my health last or wait until I needed an ER visit. 😞 Can anyone else relate?
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Then I gave this idea a shot, didn’t expect much tbh, and man... my life is forever different. I set my schedule now. I do something that makes me happy, fulfilled, financially comfortable, and has become my absolute passion. I help people and take care of myself and my family’s future. All because I stopped rolling my eyes and said “why not 🤷🏻‍♀️”.
I mean. I can try and be “logical” all I want... My claustrophobic ass is freaking out and Valium is def gonna help me do this 😂... sitting outside on this beautiful day waiting for it to kick in before my MRI. • Back in the day when I worked in an office or at a bakery... days off to get tests done = I wasn’t reliable. Or “there was always something with me”. • I would just push my health last or wait until I needed an ER visit. 😞 Can anyone else relate? • Then I gave this idea a shot, didn’t expect much tbh, and man... my life is forever different. I set my schedule now. I do something that makes me happy, fulfilled, financially comfortable, and has become my absolute passion. I help people and take care of myself and my family’s future. All because I stopped rolling my eyes and said “why not 🤷🏻‍♀️”.
Today that means a dark room, rest, antihistamines🎉🙏🏻, and lots of THC. .
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Testing yesterday took everything out of me, and my body hasn’t even begun to recover. .
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Typing this caption is about as much activity as I can handle, and for once I don’t feel an ounce of guilt about that.
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This year has been unbelievably stressful and has taken so much from me- but what I’ve gained is invaluable. .
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All the pain has forced me to focus on finding joy.
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All the loss has made me appreciate the severity of what I’m going through. .
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I can’t pretend it isn’t that bad anymore. I can’t “push through” and tell myself I’ll be fine after. .
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Because now I realize that’s not true. .
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I’m incredibly ill. I’m disabled. These conditions will never go away. .
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And now that I realize that, I finally feel free. .
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And inspired.
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I love a seemingly impossible challenge. .
Now, knowing what I’m up against, my confidence is rushing back. .
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My body may be ill, but my mind is still mine, and my will is as strong as it’s ever been. .
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And that’s enough. .
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Growth doesn’t look the same for everyone. .
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📷 @augustwren
Today that means a dark room, rest, antihistamines🎉🙏🏻, and lots of THC. . . Testing yesterday took everything out of me, and my body hasn’t even begun to recover. . . Typing this caption is about as much activity as I can handle, and for once I don’t feel an ounce of guilt about that. . This year has been unbelievably stressful and has taken so much from me- but what I’ve gained is invaluable. . . All the pain has forced me to focus on finding joy. . All the loss has made me appreciate the severity of what I’m going through. . . I can’t pretend it isn’t that bad anymore. I can’t “push through” and tell myself I’ll be fine after. . . Because now I realize that’s not true. . . I’m incredibly ill. I’m disabled. These conditions will never go away. . . And now that I realize that, I finally feel free. . . And inspired. . I love a seemingly impossible challenge. . Now, knowing what I’m up against, my confidence is rushing back. . . My body may be ill, but my mind is still mine, and my will is as strong as it’s ever been. . . And that’s enough. . . Growth doesn’t look the same for everyone. . . . 📷 @augustwren
The weirdest progress pic I’ve ever taken lmao 😂
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Yes we grew that in our tiny yard.
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Yes, I’ve lost 80lbs with hashimoto’s hypothyroid, Type 1 Diabetes, Pcos, and several other illnesses have made the gym damn near impossible for me to use. (Starting aqua aerobics like an old lady next week though so stay tuned 😂)
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DO YOU STRUGGLE WITH FAT DISEASES LIKE ME? 💁🏻‍♀️ Then stop being shy! Sack up and let’s discuss what your biggest mental or physical hurdle has been in your own journey so far! Let’s get the convo going about stubborn weight and help people realize they’re so much stronger than they feel or think! 👇🏻
The weirdest progress pic I’ve ever taken lmao 😂 • Yes we grew that in our tiny yard. • Yes, I’ve lost 80lbs with hashimoto’s hypothyroid, Type 1 Diabetes, Pcos, and several other illnesses have made the gym damn near impossible for me to use. (Starting aqua aerobics like an old lady next week though so stay tuned 😂) • DO YOU STRUGGLE WITH FAT DISEASES LIKE ME? 💁🏻‍♀️ Then stop being shy! Sack up and let’s discuss what your biggest mental or physical hurdle has been in your own journey so far! Let’s get the convo going about stubborn weight and help people realize they’re so much stronger than they feel or think! 👇🏻
💛 And it was all yellow...
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This week is going WAY too slowly and I’m waiting on a doctors appointment for Thursday to get my meds and get back on track. 
I’m all matchy-matchy today with everything!
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Also wearing my yellow @awarecauses necklace to raise awareness for endometriosis. 🌻
Get 10% off ANY Aware Causes jewellery with my promo code: iamsarahmac
Let’s start a conversation with Aware!
S. X
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#yellow #endometriosisawareness #promocode #awarecauses #endosister #invisibleillness #medication #anditwasallyellow #iamsarahmac #influencermarketing #selfhealing #autoimmune #endometriosis #fibromyalgia #chronicloveclub #lupus #butyoudontlooksick #dailygirlsfeed #antiphospholipidsyndrome #iamthankful #idaily #petitejoys #londonliving #spoonielife #pursuepretty #flashesofdelight #walklikeus #missselfie #nottheendome
💛 And it was all yellow... _ This week is going WAY too slowly and I’m waiting on a doctors appointment for Thursday to get my meds and get back on track. I’m all matchy-matchy today with everything! _ Also wearing my yellow @awarecauses necklace to raise awareness for endometriosis. 🌻 Get 10% off ANY Aware Causes jewellery with my promo code: iamsarahmac Let’s start a conversation with Aware! S. X _ #yellow  #endometriosisawareness  #promocode  #awarecauses  #endosister  #invisibleillness  #medication  #anditwasallyellow  #iamsarahmac  #influencermarketing  #selfhealing  #autoimmune  #endometriosis  #fibromyalgia  #chronicloveclub  #lupus  #butyoudontlooksick  #dailygirlsfeed  #antiphospholipidsyndrome  #iamthankful  #idaily  #petitejoys  #londonliving  #spoonielife  #pursuepretty  #flashesofdelight  #walklikeus  #missselfie  #nottheendome 
September 16-22 is Global Mitochondrial Disease Awareness Week. 💚// The mitochondria—tiny organelles present in many of our cells—create over 90% of the energy that the human body needs to function. When mitochondria malfunction, organ systems can fail. That’s what happens in patients with Mitochondrial Disease, although every individual has a different experience. Mito is progressive, meaning that mitochondrial dysfunction and symptoms worsen over time. It’s often difficult to diagnose, and there is no cure or effective treatment. // I wasn’t diagnosed with Mito until I was a teenager. By the time my diagnosis was confirmed through an open muscle biopsy, blood tests, and clinical evaluation, I already had a cardiac pacemaker and had been unable to attend school in-person for years. Throughout my childhood, I couldn’t see anything visibly wrong with me and thought that everyone experienced the same discomfort. I thought they were just tougher than me, so I kept pushing myself to be better. Regardless of how hard I worked, my body never gave me the results for which I aimed. Puberty was the straw that broke the camel’s back, and my health has continued to get more challenging in my early twenties. I tried living away from my parents, but I need assistance with daily tasks. Additionally, I’ve had an enteral feeding tube for over a year. I “cruise” around the house or use a walker, but a sparkly wheelchair is necessary for longer distances. While “warrior” and “fighter” are common titles used to encourage chronically ill people, I prefer “peacemaker”. I’m actively making peace with my body every day. Working through grief for the healthy, “normal” life that I expected was one of the toughest periods of my life. It included denial and anger, but I’ve also come to know myself quite profoundly. I know that my path isn’t a traditional one, and I’m trying not to measure my success by someone else’s yardstick. Prioritizing love and acceptance is something I can do... funky mitochondria and all. #mitochondrialdiseaseawareness [Image Description: Maria reclines on a couch, resting her head on a pillow. She is wearing a green sweater, gazing ahead.]
September 16-22 is Global Mitochondrial Disease Awareness Week. 💚// The mitochondria—tiny organelles present in many of our cells—create over 90% of the energy that the human body needs to function. When mitochondria malfunction, organ systems can fail. That’s what happens in patients with Mitochondrial Disease, although every individual has a different experience. Mito is progressive, meaning that mitochondrial dysfunction and symptoms worsen over time. It’s often difficult to diagnose, and there is no cure or effective treatment. // I wasn’t diagnosed with Mito until I was a teenager. By the time my diagnosis was confirmed through an open muscle biopsy, blood tests, and clinical evaluation, I already had a cardiac pacemaker and had been unable to attend school in-person for years. Throughout my childhood, I couldn’t see anything visibly wrong with me and thought that everyone experienced the same discomfort. I thought they were just tougher than me, so I kept pushing myself to be better. Regardless of how hard I worked, my body never gave me the results for which I aimed. Puberty was the straw that broke the camel’s back, and my health has continued to get more challenging in my early twenties. I tried living away from my parents, but I need assistance with daily tasks. Additionally, I’ve had an enteral feeding tube for over a year. I “cruise” around the house or use a walker, but a sparkly wheelchair is necessary for longer distances. While “warrior” and “fighter” are common titles used to encourage chronically ill people, I prefer “peacemaker”. I’m actively making peace with my body every day. Working through grief for the healthy, “normal” life that I expected was one of the toughest periods of my life. It included denial and anger, but I’ve also come to know myself quite profoundly. I know that my path isn’t a traditional one, and I’m trying not to measure my success by someone else’s yardstick. Prioritizing love and acceptance is something I can do... funky mitochondria and all. #mitochondrialdiseaseawareness  [Image Description: Maria reclines on a couch, resting her head on a pillow. She is wearing a green sweater, gazing ahead.]
Every single one of your feelings are valid 💛 • 📷: @jackson.groves #chronicloveclub
Every single one of your feelings are valid 💛 • 📷: @jackson.groves #chronicloveclub 
“We are not given a good or bad life. We are given a life. It’s up to us to make it good or bad.” 💁🏼‍♀️
•
I just got back from a trip I’ve dreamed of for years. I had so much fun. But what am I doing today? I’m working from home in my bed because my body can barely move and I have a fever. 🤦🏼‍♀️
•
It would be easy for me to sit here and wallow about my illnesses and how I’m stuck sick today after such an amazing trip but instead I want to focus on the amazing trip! ⭐️
•
My flares will always pop up and more than likely I’ll be sick for the rest of my life but I refuse to let that stop me from living my life. Life experiences are wonderful - even more so to a chronic illness patient! Today I challenge you to try and see the good side in something - even just one little thing. Because despite the crappy hand you may have been dealt in life, you still have a life. Take an little opportunity you can to live. 💜
“We are not given a good or bad life. We are given a life. It’s up to us to make it good or bad.” 💁🏼‍♀️ • I just got back from a trip I’ve dreamed of for years. I had so much fun. But what am I doing today? I’m working from home in my bed because my body can barely move and I have a fever. 🤦🏼‍♀️ • It would be easy for me to sit here and wallow about my illnesses and how I’m stuck sick today after such an amazing trip but instead I want to focus on the amazing trip! ⭐️ • My flares will always pop up and more than likely I’ll be sick for the rest of my life but I refuse to let that stop me from living my life. Life experiences are wonderful - even more so to a chronic illness patient! Today I challenge you to try and see the good side in something - even just one little thing. Because despite the crappy hand you may have been dealt in life, you still have a life. Take an little opportunity you can to live. 💜
ᴾᴼˢᴵᵀᴵᵛᴱ ᵀᴴᴵᴺᴷᴵᴺᴳ
ᴾᴼˢᴵᵀᴵᵛᴱ ᵀᴴᴵᴺᴷᴵᴺᴳ
As someone with some of these conditions I feel for those who never were believed in the past. Dr's still believe some of these things are psychosomatic!! Thank you @jessicaoutofthecloset for posting this in your story.

#chronicpain #anxiety #illness #fibromyalgia #invisibleillness #cervicogenicheadaches #spooniewarrior #spoonie #spoonielife #chronicillness #chonicillnesslife #chronicillnesswarrior #depression #invisibleillnesswarrior #spooniesisterhood #chronicdisease #chronicillnessawareness #spooniestrong #spooniecommunity #spooniewarrior #chronicfatigue #chronicloveclub #butyoudontlooksick #mecfs #compassion #thisisms #youdontlooksick
As someone with some of these conditions I feel for those who never were believed in the past. Dr's still believe some of these things are psychosomatic!! Thank you @jessicaoutofthecloset for posting this in your story. #chronicpain  #anxiety  #illness  #fibromyalgia  #invisibleillness  #cervicogenicheadaches  #spooniewarrior  #spoonie  #spoonielife  #chronicillness  #chonicillnesslife  #chronicillnesswarrior  #depression  #invisibleillnesswarrior  #spooniesisterhood  #chronicdisease  #chronicillnessawareness  #spooniestrong  #spooniecommunity  #spooniewarrior  #chronicfatigue  #chronicloveclub  #butyoudontlooksick  #mecfs  #compassion  #thisisms  #youdontlooksick 
I still get high highs and low lows in life. Daily. But I’ve finally accepted sensitive is just how I was made, that I don’t have to hide it, and I don’t have to fix it. I’m not broken. 💕 #neitherareyou #selfcompassion #acceptyourself
I still get high highs and low lows in life. Daily. But I’ve finally accepted sensitive is just how I was made, that I don’t have to hide it, and I don’t have to fix it. I’m not broken. 💕 #neitherareyou  #selfcompassion  #acceptyourself 
When you're in the club, and the DJ starts playing your jam 🤣 Anyways, glad she's happy this morning. She was up at 3:30 this morning coughing. Got up, fed her a bottle, gave her some Albuterol, did CPT, and put her back to bed. She woke up feeling much better 💜 In other news, she finally cut her first tooth!
When you're in the club, and the DJ starts playing your jam 🤣 Anyways, glad she's happy this morning. She was up at 3:30 this morning coughing. Got up, fed her a bottle, gave her some Albuterol, did CPT, and put her back to bed. She woke up feeling much better 💜 In other news, she finally cut her first tooth!
🥣 No gluten. No dairy.
_
@pretamangeruk always has nice soups that are gluten and dairy free!
Served with a @scharglutenfreeuk gluten free ciabatta roll. 😋
Also got a ginger and apple shot to see if it would help my nausea.
Does ginger help you?
S. X
_
#pretamanger @thepukket #desklunch #glutenfree #dairyfree #gingershot #nausea #selfhealing #endometriosis #lupus #antiphospholipidsyndrome #fibromyalgia #autoimmune #eatguide #myendonutrition #dailygirlsfeed #spoonielife #invisibleillness #iamthankful #igaddict #londonliving #petitejoys #liveunscripted #chronicloveclub #endofriendly #endosister #idaily #butyoudontlooksick #nottheendome
🥣 No gluten. No dairy. _ @pretamangeruk always has nice soups that are gluten and dairy free! Served with a @scharglutenfreeuk gluten free ciabatta roll. 😋 Also got a ginger and apple shot to see if it would help my nausea. Does ginger help you? S. X _ #pretamanger  @thepukket #desklunch  #glutenfree  #dairyfree  #gingershot  #nausea  #selfhealing  #endometriosis  #lupus  #antiphospholipidsyndrome  #fibromyalgia  #autoimmune  #eatguide  #myendonutrition  #dailygirlsfeed  #spoonielife  #invisibleillness  #iamthankful  #igaddict  #londonliving  #petitejoys  #liveunscripted  #chronicloveclub  #endofriendly  #endosister  #idaily  #butyoudontlooksick  #nottheendome 
So excited for this weekend and to be able to go and support my Team BBR friends. Sometimes competing is about more then competition it’s about supporting others in their journey. #warriorfitness #fitat40 #selflove #justbreathe
#Interstitiallungdisease #teambbr #chronicloveclub
My mums brief for treatment day was ‘just keep snapping no matter what’ This was 3 hours in when I started feeling like I was going to spew 🤢
•
It’s a really ugly photo (the angles are sahhhh wrong and there is way too much going on 😂) but I’m so glad my mum got it because I think it’s super important to show that I may always be smiling but it doesn’t mean there aren’t times that this shit doesn’t suck.
•
Pretty sure at this point I was freezing, breathing through the nausea and trying to think about anything other than spewing all over myself. I may have even been thinking about where am I going to enjoy an espresso martini next #guiltypleasure #whenshitgetsreal
•
Thank you everyone for all your beautiful messages - I am feeling much better today 🙏🏽❤️
My mums brief for treatment day was ‘just keep snapping no matter what’ This was 3 hours in when I started feeling like I was going to spew 🤢 • It’s a really ugly photo (the angles are sahhhh wrong and there is way too much going on 😂) but I’m so glad my mum got it because I think it’s super important to show that I may always be smiling but it doesn’t mean there aren’t times that this shit doesn’t suck. • Pretty sure at this point I was freezing, breathing through the nausea and trying to think about anything other than spewing all over myself. I may have even been thinking about where am I going to enjoy an espresso martini next #guiltypleasure  #whenshitgetsreal  • Thank you everyone for all your beautiful messages - I am feeling much better today 🙏🏽❤️
🚖TRAVELLING WITH A STOMA
🔹
🚑If you have an ileostomy or colostomy, you may have particular concerns about travelling. With careful planning, having a stoma should not prevent you from taking a trip. It is important to take ample stoma supplies.
🔹
⛴You are likely to be eating differently, and may have to change your appliance more often than usual, especially in hotter climates. You may need to take more supplies than you think you will use.
🔹
✈If you are travelling by air, taking your supplies in your hand luggage ensures that you are not without them if your luggage is lost. You may not be able to take scissors in your hand luggage, so make sure to pre-cut your adhesive base plates to size.
🔹
🚜It may be helpful to change or empty your pouch just before you enter security. You shouldn’t be concerned if you are asked to have a whole body scan. While the scanner may detect your stoma, airport staff should be trained to recognise this and act sensitively.
🔹
🚡Before a long journey, try to avoid food or drink that could cause excessive wind or upset. Pressurised air in the cabin can expand gasses in the body, and there is a slight risk that it may cause more gas in your bag.
🔹
🚅Some people prefer to use drainable bags while they are away, as these may be easier to empty, especially if local foods are likely to trigger traveller’s diarrhoea. Ensure you take the usual travel precautions regarding food and water hygiene.
🔹
🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/travel-ibd
_______________
Instagram: @theresearchrad 
Facebook.com/theresearchrad 
Twitter.com/theresearchrad 
YouTube.com/theresearchrad 
www.theresearchrad.com
🔹
#radiography #radiographer #theresearchrad #theresearchradtv #thecrohnchronicles #thegrumblinggut #crohnsdisease #crohnsfighter #invisibleillness #chronicloveclub #instacrohns #chronicillnessblogger #travel #travelblogger #traveltips #travelguide #holiday #vacation #beach #sun #sea #sand #ibdawareness #stoma #hydration #car #train #travelgram #positivevibes #positivity
🚖TRAVELLING WITH A STOMA 🔹 🚑If you have an ileostomy or colostomy, you may have particular concerns about travelling. With careful planning, having a stoma should not prevent you from taking a trip. It is important to take ample stoma supplies. 🔹 ⛴You are likely to be eating differently, and may have to change your appliance more often than usual, especially in hotter climates. You may need to take more supplies than you think you will use. 🔹 ✈If you are travelling by air, taking your supplies in your hand luggage ensures that you are not without them if your luggage is lost. You may not be able to take scissors in your hand luggage, so make sure to pre-cut your adhesive base plates to size. 🔹 🚜It may be helpful to change or empty your pouch just before you enter security. You shouldn’t be concerned if you are asked to have a whole body scan. While the scanner may detect your stoma, airport staff should be trained to recognise this and act sensitively. 🔹 🚡Before a long journey, try to avoid food or drink that could cause excessive wind or upset. Pressurised air in the cabin can expand gasses in the body, and there is a slight risk that it may cause more gas in your bag. 🔹 🚅Some people prefer to use drainable bags while they are away, as these may be easier to empty, especially if local foods are likely to trigger traveller’s diarrhoea. Ensure you take the usual travel precautions regarding food and water hygiene. 🔹 🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/travel-ibd _______________ Instagram: @theresearchrad Facebook.com/theresearchrad Twitter.com/theresearchrad YouTube.com/theresearchrad www.theresearchrad.com 🔹 #radiography  #radiographer  #theresearchrad  #theresearchradtv  #thecrohnchronicles  #thegrumblinggut  #crohnsdisease  #crohnsfighter  #invisibleillness  #chronicloveclub  #instacrohns  #chronicillnessblogger  #travel  #travelblogger  #traveltips  #travelguide  #holiday  #vacation  #beach  #sun  #sea  #sand  #ibdawareness  #stoma  #hydration  #car  #train  #travelgram  #positivevibes  #positivity 
Every moment of the day we get to choose...so why not choose your strength and believe in your power 💥
Every moment of the day we get to choose...so why not choose your strength and believe in your power 💥
Throw back. September 18th, 2017
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Okay so I talked about this on my insta story, but I thought I would talk more about it. As you can see from this tweet (and pictures if you swipe right) I was really sad and depressed this time last year, which was right after I got out of the hospital.
•
I remember crying every day because I felt so alone. Which was silly because I wasn’t alone. I had my family and boyfriend supporting but none of them felt what I was feeling. They didn’t have a ileostomy or almost die from being septic. They did lose a bunch of weight and look totally different. I just felt so lost and alone. And that was a horrible feeling.
•
I don’t want anyone to feel this way. And I’m showing you guys this tweet and the pictures because I want you to know a few things: 1) everyone has bad days, 2) it’s okay to be upset and mad, 3) YOU ARE NOT ALONE. I promise you this. You are not alone. Even if you feel like you are. You aren’t. There are so many of us living with a ileostomy. Loving life and rocking that bag! I promise we are here for you. Always.💗
•
I really hope this made sense and helps. I also want to share more about this. I had a journal during this time, so I if I can find it. I’ll do another post. I just want to bring some awareness to this. Because I’m sure plenty of ostomates, have felt like this before.❤️
•••
#ileostomy #ileostomyawareness #ostomy #ostomates #ostomate #ostomybag #ostomate #ostomywarrior #warrior #stoma #chronicillness #chronicpain #hiddenillness #invisvibleillness #girlwithguts #loveyourself #bodypositivity #positivevibes #countyourblessings  #nocolonstillrollin #ittakesguts #toddtheostomy #chronicallymotivated #coloplast #spoonie #loveyourstoma #chronicloveclub
Throw back. September 18th, 2017 • Okay so I talked about this on my insta story, but I thought I would talk more about it. As you can see from this tweet (and pictures if you swipe right) I was really sad and depressed this time last year, which was right after I got out of the hospital. • I remember crying every day because I felt so alone. Which was silly because I wasn’t alone. I had my family and boyfriend supporting but none of them felt what I was feeling. They didn’t have a ileostomy or almost die from being septic. They did lose a bunch of weight and look totally different. I just felt so lost and alone. And that was a horrible feeling. • I don’t want anyone to feel this way. And I’m showing you guys this tweet and the pictures because I want you to know a few things: 1) everyone has bad days, 2) it’s okay to be upset and mad, 3) YOU ARE NOT ALONE. I promise you this. You are not alone. Even if you feel like you are. You aren’t. There are so many of us living with a ileostomy. Loving life and rocking that bag! I promise we are here for you. Always.💗 • I really hope this made sense and helps. I also want to share more about this. I had a journal during this time, so I if I can find it. I’ll do another post. I just want to bring some awareness to this. Because I’m sure plenty of ostomates, have felt like this before.❤️ ••• #ileostomy  #ileostomyawareness  #ostomy  #ostomates  #ostomate  #ostomybag  #ostomate  #ostomywarrior  #warrior  #stoma  #chronicillness  #chronicpain  #hiddenillness  #invisvibleillness  #girlwithguts  #loveyourself  #bodypositivity  #positivevibes  #countyourblessings  #nocolonstillrollin  #ittakesguts  #toddtheostomy  #chronicallymotivated  #coloplast  #spoonie  #loveyourstoma  #chronicloveclub 
My poor elbow in this pic

Oops I didn’t notice until I decided to post tonight. 
Apparently what is taking so long on the IVIG thing is that insurance had approved my hospital admission but have not my IVIG from this doctor. It is probably because we switched doctors who would be administering it. 
I don’t know what we do if it does not get approved for this doctor. 
Anyways today i drove again. I mean I have to get back to real life at some point so we are slowly easing me back into things. But when I parked I forgot to put the car in park. But luckily my car won’t turn off unless it is in park, shout out to Curveball for saving the people who I would have hit. And then when I was driving home I got honked at and I don’t even know why I got honked at. 
The whole not putting the car in park thing is something that has been happening more and more often but again luckily my car is smart and won’t let me turn it off until it is in park.
My poor elbow in this pic Oops I didn’t notice until I decided to post tonight. Apparently what is taking so long on the IVIG thing is that insurance had approved my hospital admission but have not my IVIG from this doctor. It is probably because we switched doctors who would be administering it. I don’t know what we do if it does not get approved for this doctor. Anyways today i drove again. I mean I have to get back to real life at some point so we are slowly easing me back into things. But when I parked I forgot to put the car in park. But luckily my car won’t turn off unless it is in park, shout out to Curveball for saving the people who I would have hit. And then when I was driving home I got honked at and I don’t even know why I got honked at. The whole not putting the car in park thing is something that has been happening more and more often but again luckily my car is smart and won’t let me turn it off until it is in park.
Sometimes you just wake up feeling numb.
Maybe it’s because you and your partner aren’t seeing eye to eye, or you’re not happy in your current phase of life, or stress at work just keeps piling up, or the family drama that never ends, or the injustices in the world that are countless, or this, or that...
—
I woke up yesterday feeling this way and it persists. I’ve felt the ice thawing a little today, my warm spirit coming out of its safe place again, but honestly, me and the numbness are on familiar terms in this season of suffering.
—
Depression has been a part of my life since middle school. I don’t like talking about it with everyone unless we’re speaking in clinical terms because that’s easier 😉 It’s hard for me to talk about my personal depression companion without getting emotional. (Winston Churchill saw his depression as a dog. Do you visualize yours in some way?) —
But I know I’m not alone in this. I know I’m not the only one out there and for me connection to others is so healing even with the risk of being vulnerable. Actually, I would argue it’s not true connection if there isn’t vulnerability.
—
Can you relate to me? What do you do with the numbness?
—
I try not to shame myself when I’m there because that will send me from numb to the deep dark pit. Shaming and judging where I am is only counterproductive. 
Without judgment, I attempt to repeat truths to myself over and over again. Some days I’m better at this than other. Truths that I do not feel but choose to believe. I also am intentional about completing small but necessary tasks to provide some sense of accomplishment or worth.
—
These are simple ideas and often do not change how i feel in the moment, but work towards changing how I will feel in the future. Therapy has been a part of my life for several years as well and is something I recommend for every single person on this planet 🙃
—
So questions for you: what do you do with the numbness? What has helped you “thaw” out and start engaging emotionally again?
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#vulnerability #liveauthentic #depression #anxiety #realtalk #confessions
Sometimes you just wake up feeling numb. Maybe it’s because you and your partner aren’t seeing eye to eye, or you’re not happy in your current phase of life, or stress at work just keeps piling up, or the family drama that never ends, or the injustices in the world that are countless, or this, or that... — I woke up yesterday feeling this way and it persists. I’ve felt the ice thawing a little today, my warm spirit coming out of its safe place again, but honestly, me and the numbness are on familiar terms in this season of suffering. — Depression has been a part of my life since middle school. I don’t like talking about it with everyone unless we’re speaking in clinical terms because that’s easier 😉 It’s hard for me to talk about my personal depression companion without getting emotional. (Winston Churchill saw his depression as a dog. Do you visualize yours in some way?) — But I know I’m not alone in this. I know I’m not the only one out there and for me connection to others is so healing even with the risk of being vulnerable. Actually, I would argue it’s not true connection if there isn’t vulnerability. — Can you relate to me? What do you do with the numbness? — I try not to shame myself when I’m there because that will send me from numb to the deep dark pit. Shaming and judging where I am is only counterproductive. Without judgment, I attempt to repeat truths to myself over and over again. Some days I’m better at this than other. Truths that I do not feel but choose to believe. I also am intentional about completing small but necessary tasks to provide some sense of accomplishment or worth. — These are simple ideas and often do not change how i feel in the moment, but work towards changing how I will feel in the future. Therapy has been a part of my life for several years as well and is something I recommend for every single person on this planet 🙃 — So questions for you: what do you do with the numbness? What has helped you “thaw” out and start engaging emotionally again? . . . . . #vulnerability  #liveauthentic  #depression  #anxiety  #realtalk  #confessions 
“Daily Bread” 🌾Shortly  after miraculously feeding the 5,000, Jesus called himself The Bread of Life. The crowd was so impressed by what he did, that they wanted to make him king. -
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But he did not want to just fill their stomachs, he wanted to redeem their lives. -
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I can easily be like the Jews of that day - take care of me - make my life easy - fill my tummy - but I often miss my truest need. -
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My truest need is his extravagant love. -
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I pray we will not settle for temporary satisfaction, but open ourselves to all that is in his heart for us that is eternal and divine. 🕊
“Daily Bread” 🌾Shortly after miraculously feeding the 5,000, Jesus called himself The Bread of Life. The crowd was so impressed by what he did, that they wanted to make him king. - - But he did not want to just fill their stomachs, he wanted to redeem their lives. - - I can easily be like the Jews of that day - take care of me - make my life easy - fill my tummy - but I often miss my truest need. - - My truest need is his extravagant love. - - I pray we will not settle for temporary satisfaction, but open ourselves to all that is in his heart for us that is eternal and divine. 🕊
I had an appt with my internist today and she put in orders for an OT consult, a shower chair and a walker with a seat on it. My insurance company pretty much is forcing me to use these at home because if I can quickly sit down when I feel like I’m going to faint, it will hopefully help prevent injuries. I am really stubborn about this stuff because ultimately I don’t want to think I’m sick or disabled “enough” to need any mobility aids, but here we are.
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I also had PT and I’ve been in bed with a heating pad on my stomach and ice on my back almost all day. The amount of nerve pain it has triggered is unreal. I only did five different exercises lying down and this is the result. Having a body that is hypermobile with a bunch of nerve issues is really hard. I fell asleep this afternoon because it wears me out so much. High levels of nerve pain is my own personal form of hell. Nerve pain doesn’t respond well to pain meds at all, so it’s mostly just a matter of struggling through it.
I had an appt with my internist today and she put in orders for an OT consult, a shower chair and a walker with a seat on it. My insurance company pretty much is forcing me to use these at home because if I can quickly sit down when I feel like I’m going to faint, it will hopefully help prevent injuries. I am really stubborn about this stuff because ultimately I don’t want to think I’m sick or disabled “enough” to need any mobility aids, but here we are. - I also had PT and I’ve been in bed with a heating pad on my stomach and ice on my back almost all day. The amount of nerve pain it has triggered is unreal. I only did five different exercises lying down and this is the result. Having a body that is hypermobile with a bunch of nerve issues is really hard. I fell asleep this afternoon because it wears me out so much. High levels of nerve pain is my own personal form of hell. Nerve pain doesn’t respond well to pain meds at all, so it’s mostly just a matter of struggling through it.
Goodness, the beginning of the year has been crazy and exhausting! This time of year I always worry about having a flare due to stress. Thankfully, I’ve been pretty good so far 🙏🏻 Teaching with Ulcerative Colitis isn’t always easy. When I was first diagnosed I was determined that I wouldn’t quit my job, but I almost had to. The kids kept me going. They were what pushed me to get out of bed every day. They loved on me, prayed for me, and their parents were so sweet to me. Fast forward two years and I am THRIVING at work. I have more energy, and feel wonderful most of the time. However, I still have days where I have to go home(Thank you antibiotics) 🙄 
Even though I know I’ll always  have ups and downs, I wouldn’t trade it for the world. These sweet kiddos bless me more then they’ll ever know! 
#kindergarten #kindergartenteacher #teachingwithulcerativecolitis #ulcerativecolitis #ulcerativecolitisdiet #ulcerativecolitisfighter #ulcerstivecolotisawareness #ulcerativecolitiswarrior #ulcerativecolitissucks #ulcerativecolitisremission #ulcerativecolitislife #ulcerativecolitisandcrohns #crohnsandcolitis #chronsandcolitisawareness #chronicloveclub #chronicillness #invisibleillness #autoimmunedisease #remission #ibd #inflammatoryboweldisease #spoonie #foodismedicine
Goodness, the beginning of the year has been crazy and exhausting! This time of year I always worry about having a flare due to stress. Thankfully, I’ve been pretty good so far 🙏🏻 Teaching with Ulcerative Colitis isn’t always easy. When I was first diagnosed I was determined that I wouldn’t quit my job, but I almost had to. The kids kept me going. They were what pushed me to get out of bed every day. They loved on me, prayed for me, and their parents were so sweet to me. Fast forward two years and I am THRIVING at work. I have more energy, and feel wonderful most of the time. However, I still have days where I have to go home(Thank you antibiotics) 🙄 Even though I know I’ll always have ups and downs, I wouldn’t trade it for the world. These sweet kiddos bless me more then they’ll ever know! #kindergarten  #kindergartenteacher  #teachingwithulcerativecolitis  #ulcerativecolitis  #ulcerativecolitisdiet  #ulcerativecolitisfighter  #ulcerstivecolotisawareness  #ulcerativecolitiswarrior  #ulcerativecolitissucks  #ulcerativecolitisremission  #ulcerativecolitislife  #ulcerativecolitisandcrohns  #crohnsandcolitis  #chronsandcolitisawareness  #chronicloveclub  #chronicillness  #invisibleillness  #autoimmunedisease  #remission  #ibd  #inflammatoryboweldisease  #spoonie  #foodismedicine 
CLC MEMBER FEATURE: Hey, I’m Maddie. I’m 14 years old and in December 2014, my life changed forever. I was diagnosed with CRPS - complex regional pain syndrome. It has been a rollercoaster since my diagnosis, several CRPS spreads (I now have CRPS in my arms, legs, back, neck and stomach although it only started in my right wrist).
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I have been lucky enough to be able to have the opportunity to speak out about CRPS at an annual conference which was an amazing experience that I will never forget. Also, I’m a wheelchair racer and I raced for the first time in the London mini marathon 2018!!
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From this journey, I have learnt that things are not how they seem. People can look ‘normal’ and they are really struggling. Don’t judge a book by its cover as the saying goes :) Also, this journey, although horrible, brings strength to the people fighting it, we have no choice in having to deal with it but we do, and that’s pretty amazing.
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To overcome the hard times, I put on some music full blast in my earphones and listen to the tunes more than the lyrics, to calm my breathing and relax myself. Having a visual breathing cue, on your phone because you take it everywhere, helps because in times of distress/high pain, you can calm your breathing, no matter where you are and it will make you feel a bit better and more in control-  nothing is worse than having a flare in public (I know from experience).
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If you are struggling, you can always dm me and just know, whatever you put your mind to, you can do! I’m learning to walk again. That’s a journey within a journey but I’m doing it, and you can too!!! CRPS is a horrible disease/disorder, but you are not alone!
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You are never ever alone in this fight!! And you can!!! Whatever you put your mind to, you can do it!! And as I always like to say “just because I’m disabled doesn’t mean I’m unable” 💕 my dm’s are always open to anyone who wants to talk/needs a hand.
Maddie xo 🎗#chronicloveclub
CLC MEMBER FEATURE: Hey, I’m Maddie. I’m 14 years old and in December 2014, my life changed forever. I was diagnosed with CRPS - complex regional pain syndrome. It has been a rollercoaster since my diagnosis, several CRPS spreads (I now have CRPS in my arms, legs, back, neck and stomach although it only started in my right wrist). • I have been lucky enough to be able to have the opportunity to speak out about CRPS at an annual conference which was an amazing experience that I will never forget. Also, I’m a wheelchair racer and I raced for the first time in the London mini marathon 2018!! • From this journey, I have learnt that things are not how they seem. People can look ‘normal’ and they are really struggling. Don’t judge a book by its cover as the saying goes :) Also, this journey, although horrible, brings strength to the people fighting it, we have no choice in having to deal with it but we do, and that’s pretty amazing. • To overcome the hard times, I put on some music full blast in my earphones and listen to the tunes more than the lyrics, to calm my breathing and relax myself. Having a visual breathing cue, on your phone because you take it everywhere, helps because in times of distress/high pain, you can calm your breathing, no matter where you are and it will make you feel a bit better and more in control- nothing is worse than having a flare in public (I know from experience). • If you are struggling, you can always dm me and just know, whatever you put your mind to, you can do! I’m learning to walk again. That’s a journey within a journey but I’m doing it, and you can too!!! CRPS is a horrible disease/disorder, but you are not alone! • You are never ever alone in this fight!! And you can!!! Whatever you put your mind to, you can do it!! And as I always like to say “just because I’m disabled doesn’t mean I’m unable” 💕 my dm’s are always open to anyone who wants to talk/needs a hand. Maddie xo 🎗#chronicloveclub 
I’ve spent my entire life dreaming of the day when I could go to California. I feel so blessed that I was finally healthy and stable enough to make this trip and enjoy it with such amazing women. A dream come true that I’ll remember forever. ⭐️
I’ve spent my entire life dreaming of the day when I could go to California. I feel so blessed that I was finally healthy and stable enough to make this trip and enjoy it with such amazing women. A dream come true that I’ll remember forever. ⭐️
Man 20 min walk outside with the puppy has me out of breathe, but I am determined! #warriorfitness #fitat40 #selflove #justbreathe
#Interstitiallungdisease #teambbr #chronicloveclub
💕 Letting go means to come to the realization that some people are a part of your history, but not a part of your destiny.
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Always thankful.
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#petitejoys #flashesofdelight #costacoffee @thepukket #missselfie #qotd #dailyquotes #iamthankful #chronicloveclub #igaddict #walklikeus #autoimmune #spoonielife #londonliving #dailygirlsfeed #liveunscripted #pursuepretty #coffeeplease #invisibleillness #nottheendome
Pepperoni Cheese Bread! 🤤
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This uses just FIVE ingredients... two of them being pepperoni and mozzarella cheese. It’s gluten free and egg free too btw. 🤤😍
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I use my special breakfast replacement then my favorite belly fat melting vitamin with lunch thennnn I eat like this the rest of the day 🤷🏻‍♀️
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I’ve lost a shit ton of weight, significantly reduced inflammation, lowered my insulin usage, dropped my A1C, have the thicker hair than I ever have, I focus easier (even on my flare / high pain days) and  I finally have a cholesterol within normal range for the first time since my early twenties... AFTER stopping dangerous statins! 😭🙏🏻
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I’m never cranky, hangry, foggy, or spending all my time cooking like people tend to assume I’d be 🤷🏻‍♀️
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So for everyone asking how I did what I did with all my “fat diseases”... there ya go 🤷🏻‍♀️
Pepperoni Cheese Bread! 🤤 • This uses just FIVE ingredients... two of them being pepperoni and mozzarella cheese. It’s gluten free and egg free too btw. 🤤😍 • I use my special breakfast replacement then my favorite belly fat melting vitamin with lunch thennnn I eat like this the rest of the day 🤷🏻‍♀️ • I’ve lost a shit ton of weight, significantly reduced inflammation, lowered my insulin usage, dropped my A1C, have the thicker hair than I ever have, I focus easier (even on my flare / high pain days) and I finally have a cholesterol within normal range for the first time since my early twenties... AFTER stopping dangerous statins! 😭🙏🏻 • I’m never cranky, hangry, foggy, or spending all my time cooking like people tend to assume I’d be 🤷🏻‍♀️ • So for everyone asking how I did what I did with all my “fat diseases”... there ya go 🤷🏻‍♀️
🍟EATING WITH A COLOSTOMY
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🍔Once you have recovered from surgery, you will be able to eat a balanced, healthy diet. Just like anyone without a stoma, you may sometimes pass faeces less often than normal (constipation).
🔹
🍕You can help to prevent this by drinking plenty of fluid (between 2 and 2.5 litres a day) and eating enough fibre. If you have constipation, eating regular meals will keep your stoma working.
🔹
🌮If you want to add more fibre to your diet, try to do it gradually to avoid too much wind and be sure to drink enough fluid to help keep your bowel motions soft.
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🌭Some people may, at times, have an increased loose, runny output (diarrhoea). Your GP or stoma nurse can give you medicine to slow the movement of food through your bowel and thicken the output. The ileostomy section above has a list of foods that can thicken the output.
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🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/living-with-a-stoma
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Instagram: @theresearchrad 
Facebook.com/theresearchrad 
Twitter.com/theresearchrad 
YouTube.com/theresearchrad 
www.theresearchrad.com
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#radiography #radiographer #theresearchrad #theresearchradtv #thecrohnchronicles #thegrumblinggut #crohnsdisease #crohnsfighter #invisibleillness #chronicloveclub #instacrohns #foodporn #food #healthylifestyle #fooddiary #bakeoff #cake #colostomy #colostomybag #eat #eating #eatguide #foodphotography #foodforcrohns #crohnsnutrition #fruitsmoothie #digestivehealth #ulcerativecolitis #foodlover #chronicillnessblogger
🍟EATING WITH A COLOSTOMY 🔹 🍔Once you have recovered from surgery, you will be able to eat a balanced, healthy diet. Just like anyone without a stoma, you may sometimes pass faeces less often than normal (constipation). 🔹 🍕You can help to prevent this by drinking plenty of fluid (between 2 and 2.5 litres a day) and eating enough fibre. If you have constipation, eating regular meals will keep your stoma working. 🔹 🌮If you want to add more fibre to your diet, try to do it gradually to avoid too much wind and be sure to drink enough fluid to help keep your bowel motions soft. 🔹 🌭Some people may, at times, have an increased loose, runny output (diarrhoea). Your GP or stoma nurse can give you medicine to slow the movement of food through your bowel and thicken the output. The ileostomy section above has a list of foods that can thicken the output. 🔹 🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/living-with-a-stoma _______________ Instagram: @theresearchrad Facebook.com/theresearchrad Twitter.com/theresearchrad YouTube.com/theresearchrad www.theresearchrad.com 🔹 #radiography  #radiographer  #theresearchrad  #theresearchradtv  #thecrohnchronicles  #thegrumblinggut  #crohnsdisease  #crohnsfighter  #invisibleillness  #chronicloveclub  #instacrohns  #foodporn  #food  #healthylifestyle  #fooddiary  #bakeoff  #cake  #colostomy  #colostomybag  #eat  #eating  #eatguide  #foodphotography  #foodforcrohns  #crohnsnutrition  #fruitsmoothie  #digestivehealth  #ulcerativecolitis  #foodlover  #chronicillnessblogger 
Honestly, ladies... I’m curious!
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Do I think you NEED to be a certain weight or look a certain way to feel or measure your self esteem? ABSOLUTELY NOT.
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But the majority of the chronically ill ladies who come to me feel trapped. They personally wanna lose weight and while they try their hardest (hating it along the way) whether it be due to illness or due to self sabotage and discouragement... they feel like it’s IMPOSSIBLE to lose weight.
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There’s SO much info out there it can all feel so super impossible - and I get that!
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It wasn’t until I figured my method out did I realize just how different a realistic lifestyle is than following a “diet”. It needs to be a second-nature, easy to fit into life, non overwhelming yet MAJOR change. Make sense?
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So tell me IF YOU’RE BRAVE ENOUGH- why do YOU feel you haven’t successfully reached your confidence or weight goal? 🤔
Honestly, ladies... I’m curious! • Do I think you NEED to be a certain weight or look a certain way to feel or measure your self esteem? ABSOLUTELY NOT. • But the majority of the chronically ill ladies who come to me feel trapped. They personally wanna lose weight and while they try their hardest (hating it along the way) whether it be due to illness or due to self sabotage and discouragement... they feel like it’s IMPOSSIBLE to lose weight. • There’s SO much info out there it can all feel so super impossible - and I get that! • It wasn’t until I figured my method out did I realize just how different a realistic lifestyle is than following a “diet”. It needs to be a second-nature, easy to fit into life, non overwhelming yet MAJOR change. Make sense? • So tell me IF YOU’RE BRAVE ENOUGH- why do YOU feel you haven’t successfully reached your confidence or weight goal? 🤔
What a concept! 🤷🏼‍♀️ be your own advocate and seek out the support you need - you deserve it. 💕 #speakyourtruth #askforhelp (sorry for the low quality pic, message was too important to not share)
What a concept! 🤷🏼‍♀️ be your own advocate and seek out the support you need - you deserve it. 💕 #speakyourtruth  #askforhelp  (sorry for the low quality pic, message was too important to not share)
Success never comes easy. I’ve worked my ass off to get from where I was in June 2016 to where I am today. Hours of physical therapy to strengthen my muscles, thousands of calories to gain weight, hundreds of doctors appointments to stay on top of my health and so much more. And there still work to be done.
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But I’ll do anything it takes to stay alive & well. To continue this journey. To be successful in life and with my health.
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If you’re going through a challenge (whether it’s health related or not), do whatever you need to do to become a success story. 💜
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[[Thank you @lyss0432 & @csmccarth for the shirt. 🤗]]
Success never comes easy. I’ve worked my ass off to get from where I was in June 2016 to where I am today. Hours of physical therapy to strengthen my muscles, thousands of calories to gain weight, hundreds of doctors appointments to stay on top of my health and so much more. And there still work to be done. . But I’ll do anything it takes to stay alive & well. To continue this journey. To be successful in life and with my health. . If you’re going through a challenge (whether it’s health related or not), do whatever you need to do to become a success story. 💜 . [[Thank you @lyss0432 & @csmccarth for the shirt. 🤗]]
I feel like that snail 🐌 moving slowly to get back where I was. #warriorfitness #fitat40 #selflove #justbreathe
#Interstitiallungdisease #teambbr #chronicloveclub
Sleeping 😴 in the hospital is ROUGH! Beeping noises, nurses coming in and out as they please, phlebotomists turning on all the lights 💡 in the middle of the night...it gets pretty ridiculous! From what I’ve learned about sleeping in the hospital is that there are certain things that can make it feel more at home.
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DO bring your own mattress pad (temper pedic), sheets, pillow and pillow case, and blankets!!! If you don’t have a mattress pad, ask for a temper pedic bed or the bed they use for the people with bad backs. This will make you feel at home & your body will love you! Also, tell the doctors that you want a DO NOT DISTURB during the hours that you are asleep. This will allow you to get a good night sleep with no disturbances. Another way is if the lights from the hall are too much for you and they don’t have black out blinds, put a sheet on top of the window to try and block out the light. Another thing to do, is to tell the nurses to put the machines alert for the IV KVO and heart monitor (if they can see it from their station) to be put to the lowest volume possible! Always bring your own Pajamas and slippers!! Pajamas are key to feeling a bit normal and a lot comfier than their gown! I always brought pjs that were easily accessible to my Port! I was known for my wardrobe and my Slippers because I hate the socks with the tread!! I always made a fashion statement and I was told that I was known as the most fashionable patient they’ve ever had 💁🏼‍♀️💁🏼‍♀️💁🏼‍♀️ I am proud hahaha
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Make sure you feel as comfortable as possible in the hospital. Ask the nurses and staff if there’s any way to help your discomfort if you can’t tackle it yourself!
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What is your hospital essential?? 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️
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❌⭕️❌⭕️ Tiff
Sleeping 😴 in the hospital is ROUGH! Beeping noises, nurses coming in and out as they please, phlebotomists turning on all the lights 💡 in the middle of the night...it gets pretty ridiculous! From what I’ve learned about sleeping in the hospital is that there are certain things that can make it feel more at home. — DO bring your own mattress pad (temper pedic), sheets, pillow and pillow case, and blankets!!! If you don’t have a mattress pad, ask for a temper pedic bed or the bed they use for the people with bad backs. This will make you feel at home & your body will love you! Also, tell the doctors that you want a DO NOT DISTURB during the hours that you are asleep. This will allow you to get a good night sleep with no disturbances. Another way is if the lights from the hall are too much for you and they don’t have black out blinds, put a sheet on top of the window to try and block out the light. Another thing to do, is to tell the nurses to put the machines alert for the IV KVO and heart monitor (if they can see it from their station) to be put to the lowest volume possible! Always bring your own Pajamas and slippers!! Pajamas are key to feeling a bit normal and a lot comfier than their gown! I always brought pjs that were easily accessible to my Port! I was known for my wardrobe and my Slippers because I hate the socks with the tread!! I always made a fashion statement and I was told that I was known as the most fashionable patient they’ve ever had 💁🏼‍♀️💁🏼‍♀️💁🏼‍♀️ I am proud hahaha — Make sure you feel as comfortable as possible in the hospital. Ask the nurses and staff if there’s any way to help your discomfort if you can’t tackle it yourself! — What is your hospital essential?? 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️ — ❌⭕️❌⭕️ Tiff