130,725 posts

It’s almost the weekend! Isn’t that nice? 😊
3:45am was last time I noted before sleep this morning - up at 7am to get the boy ready for school - oldest and bestest pal walking him in to school with her - could kiss her (in fact I will) 😘 feel a flare coming on ☹️#fibromyalgiaawareness #fibro #fibrofog #fibrowarrior #fibroflare #insomnia #feelnauseous #shaky #fibroflare #chronicillness #chronicpain #chronicexhaustion #chronicallyill #alreadyexhausted #cfs #chronicfatiguesyndrome #whatsyourlabel #sorrytomoan
Sometimes feels like I’ve read every article out there ... they eventually all start reading the same. I would say, (after my bio link), this is one of the best articles I’ve come across in a long time. ... { Screenshot most of it, so big thanks to ##myplaceofserenityblog for bringing to light some of the harder facts regarding our ##invisibleillness . “Chronically love. Chronically light. ##Chronicallyill .” www.myplaceofserenity.com } • • • ##butyoudontlooksick ##chronicillness ##fibromyalgia ##fibromyalgiaawareness ##fibromyalgiasymptoms ##symptoms ##instahealth ##shame ##lossoffriends ##isolation ##medicationmanagement ##depression ##discrimination ##ableism ##disability ##chronicfatigue ##cfs ##me ##spoonie ##fibrofighter ##fibrowarrior ##understandus ##millionsmissing ##peoplehopetribe ##chronicloveclub ##thatfibromama ##phff_wwnf 💜
Every year, the 25th May is recognised as World Thyroid Day. An international day for people to become more aware of what the thyroid gland is and why it’s so important. It is also a day to raise awareness of the conditions associated with it, such as hypothyroidism. I have a blog on #WorldThyroidDay that you can share to help raise awareness. Link in bio 🦋 #chronicillness #chronicallyill #chronicallyfabulous #chronicfatiguesyndrome #hypo #hypothyroid #hypothyroidie #hypothyroidism #underactivethyroid #thyroid #thyroiddisease #thyroidwarrior #thyroidproblems #hashis #hashimotos #hashiwarrior #hashimotosthyroiditis #hashimotosdisease #hashimotoswarrior #adrenals #adrenalfatigue #autoimmune #autoimmunedisease #thyroidawareness #theinvisiblehypothyroidism
There IS a difference between living and existing. Existing is just breathing. It's ok to exist but it's not a way of life. Shouldn't be the way of life you are experiencing. It's ok if somedays the only thing you can manage is to wake up and breathe. Just how there's a difference in quality and quantity. Would you rather live a 100 years, just merely existing? Or would you rather live a life? #mentalhealth #depression #suicideprevention #spoonie #chronic #majordepressivedisorder #anxietydisorder #ehlersdanlossyndrome #lifestylechanges #eatingdisorderrecovery #anorexia #chronicallyill #chronicillness #spoonie #livelife
Day 25: “one person you’re grateful for” @elmilto , my boyfriend! Fucking look at him! He’s so handsome and nice and awesome and AHH I love him so goddamn much! #edschallenge #ehlerdanlosawarenessmonth #mayforeds #ehlerdanlossyndrome #ehlerdanlos #eds #invisibleillness #invisibleillnessawareness #chronicpainwarrior #chronicallyill #chronicillness #boyfriend #couple #couplegoals #iloveyou #gay #lgbt
Day 71 - strong as hell. This post is specific about today. I’ve already posted about being strong, being a warrior; days like today prove it. 💜 Yesterday was hard, yesterday when I got home from work I was so weak I was shaking, I got into bed and didn’t move until my husband got home 2 hours later when I sat up for a cup of tea, I was sure yesterday that I would have to call in sick today, despite it being the last day of half term. I was sure I wouldn’t make it. 💜 Last night, the care I received from @joshubuh helped so much that I started to feel better last night. I managed to go the living room, eat dinner and watch a sweet movie, I slept really well last night because I was so beyond tired my brain managed to shut out the pain, I was asleep as soon as my head hit the pillow. 💜 This morning Josh and I talked through whether or not I felt well enough to work. I decided if I stayed in bed the answer would definitely be no, because every morning I feel like I can’t get out of bed; every morning I do. 💜 Upon walking to the bathroom I decided I can do it. I’ve been rolling a rock up a hill every day, and watching it roll back down every night for so long now. I can manage it one more day before I get to have my half term holiday. I’ve damned well earned it. . . . . . #100spoons #spoonie #spoonielife #chronicallyill #chronicillness #chronicpain #chronicfatigue #invisibleillness #butyoudontlooksick #whatfibromyalgialookslike #sisyphus #strongashell
It’s FRIDAY!!!!!!! 💃🏽 Yes this is me on my bike but no I’m not out riding today, wishful thinking 😩 After a week of mucked up hospital appointments I’m anxiously waiting to hear from the triage team at the hospital this morning 🙏🏽 Really praying they can see me next week. Considering I have been waiting & suffering for nearly 2 years it’s about time they sorted something out!!!! But it always seems to lead to a dead end with the wrong doctor 😤 Hopefully I’m going to see infectious diseases to get tested for #lymedisease 🐜 But then again I thought that was happening twice this week & it didn’t 🙄 No one wants to test me for it, it’s crazy!!!!
If you could check out @beadsofstrength that would be awesome! We send out packages of beads, uniquely packaged (for each individual) for free throughout the world! It’s taken a lot of time and money to get where it’s at and I’m hoping it can become such a bigger and better project as it continues! We have big future ideas ahead of us and we’re so excited to share the news with you all soon! Donations are always appreciated and it’s open to all ages! So many warriors have received beads and it lightens up their heart and helps them feel strong and brave! Almost two hundred applications and about 120 have been sent out! In order to keep this going, we’ll need three things: • Donations • Support • Feedback & • . . . #beads #bracelet #necklace #beadsofstrength #string #beadsof #strength #chronicillness #chronic #illness #invisibleillness #chronicallyill #chronicillnessawareness #chronicillnessjourney #journey #fightlikeawarrior #fighter #strong #brave #courageous #beadsofinstagram #giveaway #soontocomegiveaway #420 #donationsneeded #donation #donate #support #feedback
Today I had a specialist appointment and then a doctors appointment - this is the resulting tests and paper work 📃 So I’m allergic to Sulphur which was in the tablet I was taking - so I’ve stopped takin sulfasalazine and naprosyn (I’ve been on naprosyn for 7 years). We upped my prednisone which I’ve also been on for 7 years 💊 I also need an iron infusion, but unfortunately there’s a few weeks wait 💉 We are also checking to see if I’m bleeding internally which could be causing the iron deficiency. Having X-Rays to determine where there is active arthritis in my body. Emotionally I’m pretty drained. Ready for all this pain to stop and for everything to just go back to “normal” 😔 But we must push on! 🤞🏼💪🏼 • • • #chronicillness #chronicallyill #chronicallyfabulous #jia #juvenilearthritis #juvenileidiopathicarthritis #juvenilerheumatoidarthritis #jra #ja #sick #sickkids #hospital #lovemylife #arthritis #arthritissucks #meds #medication #lifewithspoons #needmorespoons #spoonie #spoonies #pain #jointpain #illness #invisibleillness #disease #autoimmune #autoimmunedisease
So tierd..so sick of this pain all the time during the night. I go toilet all the time...constant broken sleep and yet my bladder still punishes me 💔😪 I’d be better off dead 😔. This disease is pure evil 💔😔 #interstitialcystitis #interstitialcystitisawareness #pbs #chronicillness #chronicpain #chronicallyill
💁🏻‍♀️💉 I’ve had a lot of abdominal pain for the past week. I don’t know if it’s from the slow motility related to my autonomic issues, or if it’s because my #Stelara was close to being due. I haven’t experienced this prior to any of my other injections, so we’ll see if tonight’s dose does the trick🤞 . Did you know that I only have to inject Stelara 6 times per year to treat my #crohnsdisease ? Pretty easy & totally painless. Stelara is a biologic (immune suppressant) medication that targets two proteins in the body known to trigger inflammation. It generally has a low rejection rate, which is why my GI chose it for me (given my prior reactions to Remicade & Humira). I’ve also been pretty lucky & haven’t experienced any real side effects. My #MastCellActivation does flare for a few days afterwards, but that probably has more to do with my #MastCell than the actual Stelara itself. . P.S. #selfcare today included buying myself happy flowers (& chocolate) ☺️ . #autoimmune #ostomy #nocolonstillrollin . . . . . . . . . . . . . #IBD #invisibleillness #crohnsandcolitis #ileostomy #inflammatoryboweldisease #ulcerativecolitis #remission #dysautonomia #EDS #ehlersdanlos #fibromyalgia #chronicallyill #spoonie #ostomate #potssyndrome #chronicpain #autoimmunedisease #crohns #invisibledisease #chronicillness #posturalorthostatictachycardiasyndrome #potssyndrome 📷:@crohns_spoonie
Finally recovered from IVIG, but I have a cold now. 😷 My baby knows when mama needs extra snuggles. 🐶💕 #dogsarethebestmedicine
The weather is so beautiful! Summer is here! . I finally got a bike last week, and tonight was my first ride in a loooooong time. It felt good to get moving! . . Exercising and eating nutritious food is my biggest pitfall in making sure I continue to improve my health. . . Here's to summer breezes, long bike rides, yummy food, and a healthy summer! . I'd love to hear what you like to do to keep your #endometriosis at bay...how do you stay active? Let me know down below! 👇🏽 . Living with hope & feeling refreshed, Krista 🚴 #endo #endometriosisawareness #endowarriors #endoladies #livingwithendo #chronicallyill #chronicillness #stayingactive #bikerides #bike #retrobicycles #endoisnottheend #livingwithhope . (Bike pic from walmart.com---pic of my bike)
It's Tonic Time ...  "Chamomile Nettle Tea"  This is an old school brew for health and wellness. Together they are detox warriors.  4 cups boiling water 1 to 2 teaspoons dried nettles 2 teaspoons dried chamomile Honey or stevia, to taste  Pour boiling water over nettles and chamomile. Allow to steep for approximately 7 minutes. Strain chamomile and nettles before serving. Stir in honey, to taste. . . . #medicalmedium #plantfeasting #medicalmedium28daycleanse #healingchronicillness #plantbaseddiet #cleaneating #lowfatvegan #vegan #foodasmedicine #yogafood #plantpower #veganfood #fitfood #foodismedicine #fruit #fruitlove #natureheals #lifechangingfood #healing #healingfood #juicing #chronicallyill #vegan #plantlove #paleo
Bad news and good news... I’m losing Medicaid. Without it as my secondary insurance, I’m going to struggle with copays and more medical bills. Which adds a lot of stress. I don’t even want to think about what’s gonna happen when I lose my primary insurance in a few years. The only good side to losing Medicaid is that I’m no longer as limited with what doctors I can see. I already got an appointment with a neurologist that’s supposed to be really good. She wouldn’t see me before because I have Medicaid. But now that I’m losing it, she’s going to see me in October. • • • #selfie #spoonieselfie #spoonie #chronicallyill #chronicillness #invisibleillness #disabled #potsie #dysautonomia #posturalorthostatictachycardiasyndrome #pots #smallfiberneuropathy #migraines #ibs #cfsme #cptsd #neurocardiogenicsyncope #chronicpain #chronicfatigue #chronicillnesswarrior #spooniewarrior #healthupdate
What a fun night 😎 my brother called and asked if I wanted to grab dinner and come up to the recording studio with him, and for once I was able to get it together last-minute! It’s so cool to listen to the music he makes, but it’s even cooler to watch him mix songs in person. The AC is broken, which isn’t helping my dizziness, and my migraine isn’t loving the speaker volume, but I can’t imagine a better way to spend the evening. (I’m also very proud of my studio outfit- it hides my TENS unit AND that Pink Floyd shirt was his in 5th grade 🤣)
24. “What was your worst encounter with a doctor?” Do I have to choose just one?😶 Probably my experience with a neuropsychologist that I had back in October. I was originally sent for a second neuropsych after my second TBI in April of 2017. It was more of a milder injury, but still caused a big set back in cognitive functioning and emotional regulation. October was the fastest I could get in and I ended up having speech therapy before the neuropsych, which helped a lot. Anyways, this lady was rude, dismissive and blamed all my problems on depression and anxiety. This was before a lot of my other diagnosis came about and before I was diagnosed with EDS. But she knew it was suspected and that I had POTS and two TBIs in less than a year. She suggested that I simply, “Stop being a patient and get back to living normal life.” As if I could just CHOOSE to make my medical issues and symptoms go away. If that were the case, I’d most certainly be back to “normal” by now. Her report, the part that was based on an interview where I told her info, was greatly innacurrate. As if she didn’t listen to me at all. She stated things in a manner that were not only incorrect, but also used to try to undermine me in some way? Example: My first report from my last neuropsych notes that he wasn’t going to inact accommodations right now, (because I was totally against it at first and thought I’d be back to normal in no time), and also stated that I may require them when I get back to school, listed examples, and said to reach out to his office. Which ultimately I did when I realized I was struggling. And she stated: Previous neuropsychologist did not recommend accommodations, but Mahala sought them out anyways. 🤦🏻‍♀️ In all, I had like three or more different doctors fill out info for accommodations since things kept getting worse in many ways and I was diagnosed with more conditions. There are so many things like this. While yes I do struggle with my mental health from time to time, it is not the reason I am not getting better. [Continued Below]
Day 24- Spoonie Theory I get a lot of questions about what it means to be a spoonie... well I think these pictures sum it up. I wanna have a good Memorial Day weekend so I’ve been very diligent about taking time to rest after work. I’m saving my spoons 😩 Those with chronic illnesses take naps a lot to re up their spoons throughout the day. So when someone says they’re all out of spoons that’s what they mean. #lupusawarenessmonth #livingwithlupus #spoonie #spoonietheory #fatigue #spoonielife #chronicallyill #healthbloggers #wellnessblogger #blackgirlswhoblog #lifestyleblogger
5.24.18. So a lot of what I wanted to mention is in the last photo on what I am grateful for. I am grateful for having been able to do some basic household necessities, my best friend always seeming to understand me and be there [I wish she had an Instagram to tag her with...], school actually working out so far, feeling like I finally have church back in my life.. more than ever, and FEELING LIKE MY SLEEP IS GETTING BACK ON TRACK. My meds were increased today at my psychiatry appointment, and I’m about to crash now.... So much earlier than I have been, by a long shot! I also got to see my hematologist the other day, and looks like I’ll be going down to low-dose blood thinners once I get to walking again and then just staying there. That means I can periodically take ibuprofen again!! So excited... It could really help my pain level💓 . Anyway, things seem to be okay. I am even thinking of applying for a job I just saw posted this evening... It’s part-time, remote, writing related, and has great pay. And I think I’d be perfect for it... So that’s on the to-do list for tomorrow: apply📝 I’m just doing okay for myself now, and I’m proud of that. I’m by no means perfect, but damn does this feel nice... Wishing you all well💜💜 . [PS: the template is cropped a bit because it wouldn’t cooperate with me, but it was made by @positivelymolls !❤️] . Goodnight, loves!!💤
First day of physical therapy for neuro issues. It went very well. Going to do more light yoga in the backyard, like I have been, and try to get my endurance up more. My hands-free stairs practice that I have been doing at home is already paying off. Have to be careful, though, because things are wonky compared to what they were before. Going to work more on balance/toe-to-heel walking, as well. #EPS #neurology #physicaltherapy #chronicallyfabulous #chronicallyill #chronicpain #gettingstronger #reversingdamage #dercumsdisease #fibromyalgia #spoonie #FND #ssridiscontinuationsyndrome #akathisia #trauma
NEW IN THE SHOP NOW FOR $5.49!!! Tomorrow is the last day of children’s characters then next week will have a new theme! #medicalmask #surgicalmask #chronicallyill #chronicillness #spoonie #facemask #nedicalfacemask #peppa #peppapig #police #policeofficer
During this month’s PCP appointment we updated my blood work papers and added in Lyme’s disease, so I should be getting that blood work soon and hopefully I’m clear of rheumatoid arthritis and lymes disease. I also discussed IV infusions/PICC lines/ports with her, she thought it was a great idea but she didn’t know much about it, so she’s gonna have my cardiologist set me up for that, and that appointment is June 11th!! So excited to finally figure things out. And Dakota did AMAZING!!! Very impressed considering the doctors is very scary for him because of all the weird smells and my high anxiety, and it was his second time! - Follow my pawtners! @percy.sdit @sditkoda @scoutmyhero @blue_eyed_echo (Comment/dm to be pawtners) - Follow my personal @chronically.jordan - - #sdit #servicedogintraining #servicedog #sdteam #medicalalertdog #psychiatricservicedog #potssyndrome #posturalorthostatictachycardiasyndrome #chronicmigraines #hemiplegicmigraines #chronicallyill #chronicillness #chronicillnesswarrior #chronicillnessfighter #sensoryprocessingdisorder #panicdisorder #chocolatelab #dog #labs #spoonie #potsie #fibromyalgia #invisibleillness #invisibledisability
Finally I have a new blog post going live on my blog at 9am in the morning and this ones all about things in the spoonie community that I hate, A few things have been bothering me for a while now and I feel like I just need to get them off my chest! Have a read when it goes live! ❤️❤️❤️❤️❤️ • • • • • • • • • • •#blogger #blog #bloggers #blogpost #newblogpost #spoonieblogger #spoonie #spooniecommunity #spoonielife #spooniewarrior #spooniesisters #spoonieproblems #spooniestrong #spooniesupport #spooniestrong #spoonies #chronicfatiguesyndrome #chronicpain #chronicallyill #chronicallyill #chronicillnesses #chronicillness #disabled #disabilities #disability #disabilityawareness #spooniemom #spooniemum #disabilityawareness #spooniesunite
A friend and fellow foodie shared this recipe with me so I had a little fun ...  "ChickPea Baked Frittata with Zucchini"  1 large grated zucchini (or 2 medium) 1 tablespoons olive oil (optional) 1/2 teaspoon ground coriander 3 peeled, grated garlic cloves 1/4 teaspoon turmeric powder 1/4 teaspoon smoked paprika powder 1/3 cup roughly chopped basil leaves 1/4 cup chopped green onion 1 cup chickpea flour 2 cups water Salt and pepper, to taste  To garnish ~ Sesame seeds Fresh herbs ( I used green onion)  Preheat the oven to 350°F.  In a non-stick pan on medium-low heat with the oil (use water if you don't want to use oil), cook the zucchini and garlic with the coriander, turmeric and paprika. If it's too dry, add 1-2 tablespoons of water to help it cook. Once the zucchini is softened and translucent - this will take around 10 minutes or less - mix in the chopped basil and green onion and turn off the heat. Add salt and pepper as desired.  In a large bowl, whisk together the chickpea flour with the water. Add the zucchini mixture and stir everything up evenly. It should be thick enough that the zucchini pieces do not sink to the bottom. Pour into a lined pan and bake for 50-60 minutes, or until there is a beautiful golden brown colour on top. For the last 3 minutes I used the broil setting on my oven to intensify this. But keep an eye on your frittata if you do this because it will go from perfect to burnt in just a minute!  Allow to cool for 10 minutes ~ Enjoy . . . #plantfeasting #healingchronicillness #plantbaseddiet #cleaneating #lowfatvegan #vegan #foodasmedicine #yogafood #plantpower #veganfood #fitfood #foodismedicine #fruit #fruitlove #natureheals #lifechangingfood #healing #healingfood #juicing #chronicallyill #vegan #plantlove #paleo
Just a reminder that you’re awesome. Life can be hard. But you’re showing up. Mad props. 🙌🏼❤️💪🏽 #thisisms
Not the best quality pic but I love it because these are some of my favorite necklaces! I think Hufflepuff suits me pretty well. . Anyway I'm still struggling with pain, it's gone from being my neck to my back to my hips and now a migraine all within the past day. I'm gonna be honest my anxiety is pretty bad too and I've been picking my skin so that's another reason I didn't do any makeup today. I've been feeling very overwhelmed by everything and tired of health issues all together. It's not really an option for me though because it's going to be a lifelong issue. . I hope you're all doing well! I'll have a new look posted tomorrow if I'm able to. Sending you all love and positive vibes 💗💖. #chronicpain #chronicillness #rheumatoidarthritis #fibromyalgia #spoonie #disabled #invisibleillness #fibrowarrior #migraine #harrypotter #hufflepuff #jewlery #lunalovegood #chronicallyfabulous #chronicallyill
These two (as well as 2-3 more that I don’t have photos of) also we’re dropped at the PO this week!! We’ve sent 12 packages this past week!! Please feel free to share pictures and use the #spooniecareboxes tag!! We LOVE seeing them!! Also tell your friends about us! 😊 #chronicallyill #chronicpainwarrior #chronicillness #spooniesunite #spooniecarebox #rooismyspoon #carepackage #carepackages
These 5 were dropped off at the post office yesterday!! Y’all, we’d absolutely LOVE to see photos of your package and hear what you have to say! 💜💜 #spooniecareboxes #spooniemail #snailmail #chronicallyill #chronicillness #superspoonies #rooismyspoon #postofficerun
This morning I drove an hour away to my endodontist & finally got my root canal fixed finally after the shit show my regular dentist put me through (drilled 2 holes under my tongue accidentally, lied about the injury & said I was fine, stitches needed & 4 ER visits from that, over a month of numbness to my face/chin/jaw/lip, insanely painful lightning like stabbing pain in my neck/jaw/tooth, many X-rays, Cat scans, 3 new dentists, pain management, turned out they drilled to the side away from infected root so I kept getting tooth aches after he root canal, didnt finish the root canal even though they said they did because they didn’t believe me when I told them my endodontist said I had 3 nerve roots not there usual 2, also didn’t finish filling my tooth, broke & left a drill tip in my nerve root and never told me about it, 3 new medications & over a month of trauma & PTSD). 😱🖕🏼I’m so glad I finally retreated my fucked up incomplete root canal; my insurance somehow approved of the preauthorization in ONE day, when they warned me that often retreatments on the same tooth are typically impossible to get done within such a short period (it’s been about a month since I had it), but somehow it took a record time to authorize 1 DAY, instead of the typical 2 weeks!! 🙌🏻😱 My nerve blocks for my RSD CRPS usually take anywhere from 2 weeks to up to a month to authorize so I’m so happy & thankful they managed to reschedule me for 2 days later. Never seeing an Asian, Indian or any race other than white dentists ever again (is that racist? They’ve all caused me so much pain & trauma). The endodontist managed to get the metal file out of my nerve root, he also finished their incomplete job & all his numbing injections were much more painless than the 1 foot thick ass ancient needles my shitty Indian dentist had. Also found out my old root canal that the same malpractice dentist did a year ago is also incomplete & infected now too. Meds & RSD CRPS & dry mouth & lack of hydration, lack of flossing, not being able to regularly brush my teeth because of my chronic pain & of course having braces on for 6 years caused a lot more damage to my teeth than helped 🎗
This is for everyone who has been a part of my golf outings in any way. ⬆️ Throwback to one year ago today at #nicoleslinksforlupus ! * None of this would be possible if it wasn’t for the help that goes into planning and running this unbelievable event. People who take off work, drop what they’re doing, and volunteer their time to help with gift baskets before or to host events & sell tickets the day of. And to everyone who shows up to golf, to hang...you know what an amazing day it is. Seeing everyone’s face while standing up at that podium makes my heart smile and you all show me that you have my back on this journey to beat illness. Last but not least, thank you to the sponsors who are a tremendous part in helping me reach my fundraising goals each year. * EVERYONE who supports this event is a freakin miracle in my eyes, and I’m thankful for and appreciate all of you. Can’t wait for this year!!!!!! It’s going to be the best one yet. ⛳️ 🏌🏻‍♀️ 🏌️💜 #lupusawarenessmonth 💜
Finally got my meds sorted. Going to the doctor tomorrow so I'm going to be getting at least 4 more meds. Plus I have a tincture, a nose spray and two meds in the fridge. So many meds! #lymedisease #lymediseaseawareness #lymewarrior #lymie #chroniclyme #medicine #herbalsupplements #naturopath #holistichealth #holistic #mecfs #cfs #chronicfatiguesyndrome #medicineorganizer #pills #sponnie #chronicillness #chronicallyill #chroniclife
✨ Sparkle Sparkle ✨
Thanks Ryan 😌
(This has nothing to do with the weird cosplay hiatus going on) So I have had so many big cosplay ideas and things I WANT to make but I do not currently have the ability to do it for a few reasons. Firstly Ive been struggling with all my illnesses, this winter was a very rough one on my body so I havent really been doing ANYTHING lately. Secondly I simply do not have the money. I usually make pretty casual cosplays but I have moved onto bigger and better cosplay ideas. Thirdly, and the biggest reason, I was recently diagnosed with Cushings though I have probably had it for over a year. Cushings is something that can happened from being on Prednisone for a long time. I have been on it for 7 years and havent been able to get lower than 4mg. It has taken a HUGE toll on my body. Bone desity has become a problem, my skins so fragile that if i move weird even a little bit, it will tear and make stretch marks. If im even poked by somebody in my stomach, legs, or arms, i will get a tear. It hurts super bad. I also have mass build ups and water retention that will not go away. My doctor said I could stop eating an exersize every day and it still wouldnt go away unless I get off my presnisone. I have gained alot of weight because of this and I dont want to spend money on cosplays that I would just have to make smaller in the future and I can fit into alot of the cosplays I do have. So as much as I love cosplay, I currently just cant do it 😔 #cosplay #cosplayer #lupus #chronicallyill #spoonie
I have my next injection at 6.30am and I can't sleep 🤦🏼‍♀️ . I think I might be slightly nervous/anxious as I keep getting horrible side effects as soon as I have it 😩
I didn’t realise that so many of my health issues were interconnected and as a result I have never asked for help during education because I thought everything I was going through was normal, I thought being tired constantly was part of being a teenager or that the fact I couldn’t remember stuff was just because I was stupid... but it’s not.. and I’d wish I’d know earlier and that a doctor had listened and put them together earlier. Because I wouldn’t be in the situation I’m in now if that was the case. #ehlersdanlossyndrome #edsyndrome #chronicallyill #assignmentstress #coursework #sore #hypermobility #appliedscience
[Caption reads:] So I'm having an interesting week... Each night I'm having really scary hallucinations whenever I wake up sightly. It's basically caused by the brain messing up and having problems waking up, so your stuck in a half awake half asleep stage so you see things that aren't really there. I'm also having what we think is a type of seizure every night, and it's stopping me falling asleep, and staying asleep properly. I'm only able to feel tired around 3-ish, and because of the "seizures", I don't get to sleep until about 4 or 5am. As you can imagine I'm really tired and sleep deprived lol, which makes all of these issues worse of course 😕 We've already booked a doctors appointment, so hopefully things will be sorted soon, but it's just making me so exhausted in the meantime 😪 I hope you enjoy EDS awareness month and you have a great day full of spoons 🥄🥄 [Caption ends] {Image Description: A photo of a blue zebra Stripe background with white text. The text reads; EDS random fact #20 : Like our other joints, the joints in our fingers offer no resistance to pressure. This makes a challenge out of holding a pen or cutlery "correctly", opening a can of tuna or sharpening a pencil. BUT we can easily... ... scratch our own backs!}
CLC MEMBER FEATURE (Michael): My official beginning to my story is September of 2014, but I started fighting MS about 10 years earlier. The doctors just could not give me a name to what I was fighting yet. • I remember the day after I found out that I had multiple sclerosis very well. I was at Table Rock State Park for training. Back in May of that year I had found and started my dream job as an Park Ranger. Because of MS, I was only able to hold onto that job for two years. The effects from MS were just too much between the fatigue and the pain. • As far as treatments go I have been on three different treatments and I just started my latest back in November. It’s called Ocrevus and so far it’s helping a lot with my fatigue and bladder control. I’m very hopeful for this drug to get me back working at least part time. • Remember to always have hope. Just in the past couple weeks I started volunteering back at the park I worked at, and the are trying to find a way to get me back working part time! So always keep fighting! God bless you all, Warriorbubba3 #chronicloveclub
It all begins and ends in your mind. What you give power to, has power over you, if you allow it 🤗. Are you a worrier? I am 🙋🏼Do you second guess yourself? Procrastinate? Make excuses? I do. Do you have trouble seeing the positive side of things or do negative thoughts creep into your head and take over? Or maybe you are negative right off the bat. I preach about #mindset a lot but this is because it's something I have to work on. DAILY. Maybe to varying degrees and it's not necessarily all the above mentioned but guess what? Life happens and it's not all rainbows and flowers even when you are living your best life. It's ok to feel down, to be angry or upset, to be sad, to cry, to want to yell and scream (for the right reasons) but limit them, deal with them, set them aside and move on. Letting these in too often let's you risk it becoming a habit and that is not good for a healthy happy life ➡️➡️#happymindhappylife #healthyliving #timetoworkout #endorphins #positivevibes #smile #sweat #personaldevelopment #personalgrowth #feelyourfeelings #selfcare #stressmanagement #fitnessaddict #fitlife #getmoving #girlswithmuscle
Reposting from @julyblooms Some great info on personality disorders!
Does this sound like you at all??? *Has a chronic illness and wants to be healthier, but is stuck at the start...and paralyzed by fear *Busy mom who puts all of your kids and husband's needs ahead of your own... you're super careful to feed your kids healthy food, but you're secretly binge eating candy when they go to bed and you make sure that your husband has time to exercise and eat healthy, but you never make or take that time for yourself *A Homeschooling mom who spends hours prepping curriculum and activities for your kids but skips taking time for yourself to read or do anything relaxing Identify with any of that??? Cause that's exactly who I was 3 years ago...before I decided to stop being afraid...to stop putting everyone else first...to start to find the time FOR ME. And I've never been happier...or healthier. You can be too...so if that sounds like you...let's chat 💖
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