#chronicliving

[nonacute]

the bitter sweet reality of a famous person being diagnosed with EDS/MCAS/POTS.

I’m so glad people will have more awareness & recognize someone can appear to be fine but struggling medically and that somebody they care about and idolize has these struggles so anybody can. The reality is also that even if a celebrity gets all three diagnoses….these are medically rare & isolating conditions that are difficult to come to & in most cases chronic and lifelong. The fear that everyone’s favorite entertainers’ dx’s are publicly known & that may inspire people to think they are now experts on the condition. Our doctors at times have yet to understand so it’s terrifying to think that people may want to start raising public awareness about something still widely misunderstood in medical spaces. The public already thinks suggesting unsolicited medical, dietary, health, and wellness tips are acceptable & helpful. It’s not. As much as it feels good to be able to identify and feel understood….the statistics & understandings are limited & isolating.

#chronicpain #chronicliving #actually disabled #edslife #ableism #ehlers danlos syndrome #mast cell activation syndrome #postural orthostatic tachycardia syndrome

[achronicvoice]

A day spent at the marketplace last weekend. What a lovely little ensemble of home made crafts, pretty flowers and fresh produce ☺️⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #achronicvoice #spoonietravel #spoonietravels #spoonietribe #spoonie #spoonies #spoonielife #spoonieliving #chronicillness #chroniclife #chronicallyill #chronicallyawesome #chronicillnesslife #chronicliving #travel #marketplace #berlin #germany #winter #freshproduce #travelgram #mentalhealthmatters #wellbeing #selfcare #goodfoods #groceries #groceryshopping #travel_captures #spooniewarrior #spooniecommunity https://www.instagram.com/p/B8JjzkoAyco/?igshid=nvwu9ifvre8l

#achronicvoice #spoonietravel #spoonietravels #spoonietribe #spoonie #spoonies #spoonielife #spoonieliving #chronicillness #chroniclife #chronicallyill #chronicallyawesome #chronicillnesslife #chronicliving #travel #marketplace #berlin #germany #winter #freshproduce #travelgram #mentalhealthmatters #wellbeing #selfcare #goodfoods #groceries #groceryshopping #travel_captures #spooniewarrior #spooniecommunity

[thefreecloset]

It’s important to keep your liver in good shape because it does so many different jobs for the body. It produces proteins and bile, plus stores vitamins, minerals, and carbohydrates. It is also the organ that breaks down toxins like alcohol and medication. It is definitely not an organ that you can live without, but it is so amazing that you can survive with just a portion of one. Still, it’s much better to protect the health of this vital bodily workhorse, and it starts with food. Following are the top foods that your liver loves.

#food #health #protiens #vitamins #carbohydrates #protectliver #liverhealth #chronicliver #liverdisease #livercancer #healthblog #lifestyleblog #guestpost #guestposting #digitalmarketing #seo #contentmarketing #writeforus

[spoonie-swiftie]

(I know this is about a week late, but it’s been a really rough week with my med changes and ER visit. So better late than never!!!) I finally got my @bravesoulblankets!!!!! It’s so nice and cozy and I love the colors 😍 I’m so thankful that they sent one to me, and at the perfect time too!!! I brought it to the emergency room with me in case I was admitted and it was soooo nice to have. Thank you so so much @melaney_niemiec !!! Also, one of my best friends (who is also a spoonie and a swiftie 😍) @swiftiesparkleshine @melissamy8 sent me the comfiest coziest socks that I wore to my dr appointments and the ER trip the other day 😍😍😍 I’m in love! I’m so thankful for these people and the amazing timing of these awesome gifts ♥️ ✨♥️Thank you both so so much! I’m so so blessed ♥️✨ #bravesoulblankets #chronicillness #chronicpain #eds #ehlersdanlossyndrome #zebrastrong #spooniesister #hospitalessentials #dysautonomia #gastroparesis #raredisease #spoonie #chroniclife #chronicallyill #chronicliving (at Asheford Crossing, Nashville)

#ehlersdanlossyndrome #spooniesister #bravesoulblankets #chronicliving #chronicillness #spoonie #hospitalessentials #gastroparesis #raredisease #chronicallyill #chroniclife #dysautonomia #chronicpain #zebrastrong #eds

[iamchronicallyliving-blog]

Flawlessly Flawed! After a sleepless and painful night I was feeling more than a little cognitively foggy and lacking in vision this morning. Through blurry eyes, post washing my face and squinting at the mirror I thought “hey you really don’t look so bad”! As I wiped my hand on a tissue, I realised the moisturiser I had slapped all over my face was in fact in foundation, clearly the closer to flawless complexion that was reflecting at me was not natural! I had managed to, in my blind state, mistake the foundation pump for the moisturiser. Disappointment! I insist on applying my makeup every day, regardless of the pain required to do this and no matter the fact that I often don’t leave the house. For me it is important, firstly, I find that when I see myself at my worst, and believe me without make up I can look horrendous, it makes me feel worse. But secondly, I use it as a gauge, if I find that I cant be bothered or I am really struggling with this daily task it is a bit of warning sign to me. It is time for me to stop and think, prioritise myself and really think about where I am at, and ultimately try and get back on track, it is my little piece of normal. I have at times ended up looking like a clown, applying make up half blinded and in pain does take some mastering and I am perhaps still not quite there yet but I embrace the funny face! #believeyoucanbe #chronicallyliving #chronicliving #chronicpain #chronicpainawareness #migraineawareness #migraine #hemicraniacontinua #livingwithpain #headachedisorders #fibromyalgia #365blog #instadaily #notflawless #fibromyalgia #warrior #anxiety #mentalhealth

#believeyoucanbe #hemicraniacontinua #warrior #fibromyalgia #headachedisorders #instadaily #chronicpainawareness #migraine #365blog #mentalhealth #notflawless #anxiety #chronicliving #chronicallyliving #livingwithpain #migraineawareness #chronicpain

[mitomarie]

#chronicliving #zebrastrong #pain #imstillalive #chronicillnesswarrior #painsomnia

#imstillalive #chronicillnesswarrior #painsomnia #zebrastrong #chronicliving #pain

[opixie]

Cleveland Clinic

Back from Cleveland Clinic, and for any one wondering what it’s like:

You go through a LOT of tests. I was originally scheduled for 8 appointments, but had 5 more added after meeting one of the doctors. Be prepared to hear that there isn’t a lot known about autonomic dysfunction, let alone treatments. It’s so hard seeing doctor after doctor and getting few answers. This past few days pushed me past my limit and I’m completely drained. On my first day at the clinic I wasn’t allowed to eat until 4:30 p.m. We had to scramble from one end of the hospital to the other between tests and it was very stressful. Luckily there were staff members to guide us! For anyone going, the food court & ABP is lovely, and they have cute gift shops next to them.

I have to drink 3 liters of electrolyte water & have 5-7g of salt a day, and as soon as my Polar heart monitor comes in I’ll be starting physical therapy. Cardiac rehabilitation is the only proven treatment of POTS; there’s no medication that’s FDA-approved for dysautonomia. 3 times a week I’m going to do 20 minutes on a recumbent bicycle while keeping my heart rate at 120, and never going above that. It might not help by much, it might not help at all, but my odds are good and I’m so tired of living like this that I’m willing to do anything. 

I’m a little disappointed that I wasn’t given any saline or medications after my testing, I’ve been throwing up and I’m too exhausted to do anything.

I need to find and make an appt with a rheumatologist in my area for my pain & CFS. My doctor at Cleveland knows that I have more than just POTS & CFS, but isn’t sure if it’s fibromyalgia or MS. Plus I have to do an emptying study with my Gastroenterologist and see if I have gastroparesis.  I’m meeting up with my primary care in a bout a week to go over my test results and get a diet plan for my IBS & acid reflux.

My life’s been on hold for these past few years, and even though I hate all of these tests, it finally feels like I’m reaching the end.

#pots #potsie #chronic #chronic fatigue #chronicliving #cleveland #clinic #hospital #illness #fibromyalgia #spoonie #sick

[mistitty]

🌟 So full of wonder 💫 Lots of tests, scans, and appointment have been happening lately. Daisy had been a rockstar 💫 She makes getting poked and prodded bearable. I don’t know what I would do without her ✨ (I’m not sure what she’s doing with her 🐾, but it’s cute 😂) °

#servicedog #workingdog #germanshepherd #bordercollie #assistancedog #sdit #medicalalertdog #makenoiseforturquoise #dysautonomia #dysauytonomiaawareness #pots #syncope #gastroparesis #ibs #ehlersdanlossyndrome #palpitations #spoonie #spoonielife #hypoglycemia #chronicillness #chronicillnesswarrior #chronicpainwarrior #invisibleillness #disabledandcute #chronicpain #chroniclife #chronicliving #babewithamobilityaid #notalldisabilities

[ohsammiii]

Bullshit colouring book 💁🏼#adultcoloringbook #colouringforadults #relaxation #fatigue #chronicliving #chronicillness

#colouringforadults #chronicillness #fatigue #relaxation #chronicliving #adultcoloringbook

[schmillwrit]

Crip Writs

You know you've got issues when you have the same cardiologist as your grandpa

#chronicliving #holter monitor #disability #chronic illness

[nonacute]

living with a chronic illness is really depressing sometimes. you can do everything right and still hurt. you can make all of your appointments and still be struggling. you can do nothing and feel completely exhausted and defeated. le’sigh..

#chronicpain #chronicliving #ableism #actually disabled #edslife #ehlers danlos syndrome #fighting #cripple punk

[achronicvoice]

😂♥️⠀ .⠀ #Repost @french_painstry_chef with @get_repost⠀ ・・・⠀ Happy Pa(i)ncake Day folks! 🥞 ⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #happypancakeday #pancake #pancakeday #pancakes #spoonie #spoonielife #spoonies #spooniesisters #spooniecommunity #spooniehumor #spooniewarriors #chronicillness #chroniclife #chronicpain #chronicpainwarrior #chronicallyill #disability #disabled #chronicpainsucks #chronicliving #chronicillnesswarrior #spoonieproblems #funnymeme #spoonieart #mentalhealthwarrior #mentalhealthsupport #mentalhealthmatters #anxietyhelp #depressionhelp https://www.instagram.com/p/B9B0Ek6H_1j/?igshid=1vmd6vmn0eovn

#repost #happypancakeday #pancake #pancakeday #pancakes #spoonie #spoonielife #spoonies #spooniesisters #spooniecommunity #spooniehumor #spooniewarriors #chronicillness #chroniclife #chronicpain #chronicpainwarrior #chronicallyill #disability #disabled #chronicpainsucks #chronicliving #chronicillnesswarrior #spoonieproblems #funnymeme #spoonieart #mentalhealthwarrior #mentalhealthsupport #mentalhealthmatters #anxietyhelp #depressionhelp

[mitomarie]

#selfcare day for me and the kitties 🐱. This little one is catching some rays on the futon today. A cat's life is so difficult 😉. #catlife #lazyday #selfcare #needspoons #batterylow #chronicliving #zebralife

#chronicliving #zebralife #lazyday #selfcare #catlife #needspoons #batterylow