13,548 posts

I know I already posted the first pic, but I took this at the rheumatologist that I mentioned earlier. Pain management wouldn't accept me as a new patient and say I had to go to rheum instead. ¤●《This is that story》●¤ The second pic is exactly how I felt leaving the rheumatologist a week ago. I told em why we can what's hopp'n now and the beginning of the back story(like every new doctor's appointment). But this time they took a copy of aaaaalll the lab work from the past few years, told me she would like to go over it all before ordering more or new tests, and she headed out of the room. The nurse came in a bit later and says that the doctor would like to see me in a month..... so no testing, no treatment of the obvious, and my favorite "We don't do anything about pain management".😬 So not my best appointment ever.😜Lol ▪Now to play the devil's advocate.😈😇 In the time between that appointment and the next one she might find something in my labs that others have missed or have an epiphany as to what we should do or look into next.🤔🤓 So I'm not going to count this doctor in the NO pile...yet.(it's not over till the fat lady sings😉) Until then it's ice packs❄, heating pads🔥, exercise💪 and a hole lot of Jesus.🤗💙 Thanks for tuning in to this post on: Doctor Roulette and Crazy Random illnesses. 😉😜😋 ¤ ▪ □ ■ • ○ ● #spoonie #chronicillness #rheumatology #medicalzebra #chronicillnesscommunity #hEDS #mcas #mastcell #eds #ehlersdanlossyndrome #connectivetissuedisorder #ice #heatingpads #yoga #mindbody #chronicfatigue #painrelief #pray #prayer #godisgood #hisgraceissufficient #themaskedqueen
Out with the old, in with the new.😎😊 The new hip/low back brace looks horrible but feels a ba-jill-ion times better because it was custom made for me.😄 Plus the upside to the bigger torso part is that it helps to keep my ribs were they should be.😆👍 ¤■》Back story《■¤ About a month ago I jumped on the Yoga/pilates train just to see if this magical pain relieving/exercise thing is all its cracked up to be. After the first session I was able to tell a different in my spatial awareness and mind body connection.(Yes, I know how weird that sounds.Yet it's a thing.) But, the more I did in difficulty level💪 actually made some of my joints worse.😣 I gave myself a couple days to recoup😴, but that took all the progress I had made and flushed it down the toilet😝. This time, starting back at the beginning, I'm going to take a bit more time on each level to hopefully avoid the random crash, and to be consistent with my workouts.😉👌 I know I just got this new custom brace, but the goal here is to not have to use it.😊😋 Pray'n that the these methods will help calm down my mast cell crazy enough to handle all mast cell triggers in the house, the ones out in public, and not require the more harsh treatments (ex: Chemo, plasmapheresis/IVIG, or 24/7 IV benadryl drips). "But if not, God is still good."🤗 Thanks to al'y'all who've been pray'n for me and my fam, and for all support ya give us. It means the world.🤗💙 ☆More updates to come.☆ #spoonie #themaskedqueen #chronicillness #hEDS #eds #hypermobile #dysautonomia #tubie #medicalzebra #genetics #hipbrace #custom #thankyou #pray #powerofprayer #support #mcas #mastcell #treatment #yoga #yogatrain #pilates #mindbody #godisgood #JehovahRapha
Another day, another plane, another airport, another country. Touching down in Miami for just a few hours before my overnight flight home. This trip has been long and I miss home and everyone I love lots. I missed my wife’s press night tonight. I miss peoples birthdays, I’ve missed people’s funerals. Just realised that I am not even home a week before the next trip. I’m tired, but there’s work to be done. We need to change things. It’s has to all be worth it. We have to get to a time when geography and wealth no longer determine your quality of life. I’ll keep saying it till it’s our reality. I’ll keep fighting till the average time to diagnosis is no longer 12+ years. The sun sets on another day, and on we go.
I got my first @wildcrystalsbox today! 😄 I asked JD if we could switch to this from Sketchbox as I was starting to get overloaded in art supplies. Super pleased with my decision! Look at that gorgeous massive chunk of zeolite and the tree agate egg. 😍 And the small abalone, amethyst, moonstone, and wave jasper pieces have magnets attached, so they're all hanging on my mini fridge by my nightstand. It was such fun to have this surprise me in the mail today! I can't wait to keep growing my collection. . . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #ehlersdanlos #ehlersdanlossyndrome #chronicpain #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #lyme #lymedisease #gastroparesis #dysautonomia #disabled #mcas #crystals #wildcrystalsbox
Hi 👋🏼 ⁣I’m just checking in to remind you that if you’re having a really fucking hard time right now emotionally; you are not alone. You are never, ever alone. ⁣ ⁣ This shit is so hard sometimes, y’all. This week has been ROUGH. I haven’t posted anything because I was waiting for things to get a little better, so I could write something inspiring. Then I remembered why I started this account in the first place: to relate to you all. Not just about the happy times but about the hard moments and painful realities of being chronically ill. ⁣ So today I’m writing this and wishing I had the answers, wishing that I had the power to fix everything for every one of you (and for myself, too). But trust me, if anyone in the world has all the answers to life, it is NOT me 😂⁣ ⁣ So I can’t offer you a solution. But I can offer you this:⁣ I will be here for you, to listen to your story and relate to you. ⁣⁣ I will keep sharing my story in the hopes you see parts of yourself in it. ⁣ I will be fully transparent about my hard times so that you can find comfort in the knowledge that someone else is battling the same demons you are. ⁣ ⁣ If all else fails, remember that even if today sucks, tomorrow might suck less. ♥️
Fantastic to see over 30 EDS UK members get together in Leeds this weekend at their support group meeting! Volunteer Area Coordinator updated us on what a special meeting it was:⠀ ⠀ "I just say a huge thank you to all our lovely members who came to the meeting today, it was great to see so many new faces - such an emotional get together! An amazing one nonetheless, your openness about your journeys with EDS made the meeting so worthwhile and valuable.⠀ ⠀ I hope you’re all resting and recharging your batteries and not in too much pain from the less than comfortable seats. I'm so pleased to say we also raised £39.50 today from ZebraRocks, raffle & refreshments so thank you for all your donations too!"⠀ ⠀ Find out more and join your local support group (link in the bio).⠀ .⠀ .⠀ .⠀ #dysautonomia #mastcell #hypermobility #bendy #fibromyalgia #chronicpain #eds #ehlersdanlos #fatigue #pain #chronicillness #physiotherapy #invisiblefight #hypermobile #mentalhealth #spoonie #raredisease #raredisease #spoonielife #invisibleillness #butyoudontlooksick #chronicallyill #ehlersdanlossyndrome #community #support #supportlocal #supportgroup
⁣Does celery juice really help? ⠀ ⠀ I’ve gotten the question SO many times. At first I wasn’t totally sold; I was feeling slightly better but wasn’t sure if I was the celery juice or not ... so I took a little hiatus from it! ⠀ ⠀ Bloating came back, the constant itchiness feeling and histamine problems came back, mentally I started to feel not so great, and I just overall felt pretty yucky. ⠀ ⠀ SO! I’m back on the train of celery juice every morning on an empty tummy! ⠀ Some of the benefits I’m feeling from it : ⠀ • way less histamine problems • less bloating • easier digestion • better detoxing • greater mental clarity • and glowing skin! ⠀ ⠀ *I‘m still juicing celery + apple, my tummy just doesn’t do well with the straight celery juice! But I’m 100% still seeing amazing benefits! There’s no ‘one size fits all’ when it comes to healing, but with that being said ... ⠀ Don’t knock it ‘til yah try it 🌱
Diving into my diagnosis... I have mold illness (mold toxicity, Mycotoxicosis) which is a Biotoxin Illness. Along with that, CIRS (chronic Inflammatory Response Syndrome) and MCAS (Mast Cell activation syndrome). These seem to all go hand in hand and basically my immune system is wreck. . I have struggled with my health for years. I started working with wellness doctors back in 2009 and then seriously looking for answers in 2016 when I had a sinus infection for 6 months that they couldn’t get rid of. That lead to a 7 hour sinus and nasal surgery (the doctors couldn’t believe how bad everything was once they got in there). About a year ago I finally found answers... MOLD! . Mold was making me sick and and everything the doctors were doing (antibiotics, steroids, etc) were just making it worse and wrecking having on my gut. This lead to Candida overgrowth amongst other issues. . I spent last summer getting Candida under control and prepping my body for a big mold detox in September... well I was very naive!!! For some reason I was in a denial and didn’t want to do more research (which is very uncharacteristic of me). It also grossed me out and I didn’t really want to know more. I just assumed I’d do the detox and move on. Boy was I WRONG! . I have made progress but it’s become a much longer and more complicated journey than I ever imagined. It’s also way more serious than I ever imagined... slowly destroying my body (from my immune system to my brain and the list seems to go on). My illness is also effecting my personal life, day to day living, our family, etc. . So I’m diving in and facing it head on. I’m doing tons of research on a problem that’s more prevalent than realized and still pretty “unknown” in traditional medicine. I will be sharing more as I learn along the way so stay tuned! . . This is a marathon and not a sprint. I know that and I know I will overcome this even though the journey is rocky at best. Please let me know if you ever have any questions... sharing what I have learned allows me to take something negative and turn it to a positive. If I can help someone els, it makes this illness worth it 💕.
Walk down memory lane. 💚 Decided today to revisit an old future memory of mine in my DNRS round. Back when I first started, nearly a year ago, I created this future memory where my husband and I went to Greece together. I used the word “historic” to describe the old building, as that was a trigger for me, but I would describe it as a “historic, adorable little house by the sea.” And in the memory I talked about how it had just been cleaned for us, and how I opened the window and smelled the scent of roses because people were doing their laundry and I could smell the dryer vents. I made sure to describe in detail how much I loved he scent, and how it reminded me of walking through a field of flowers. 😂 It was fun to revisit that memory and realize how far I’ve come. I don’t need to tell myself that I love the scent of laundry anymore. Because it’s not even on my mind when I smell it. 💚 I visited a friend in a real-life historic building a few months ago, and it didn’t even cross my mind that the building was old until a couple days in when my friend mentioned it. And I don’t need to make a show of appreciating just how clean the place is and putting it in a positive light, because I can be around cleaning products now!! So much has changed. And it’s was really fun to revisit that old future memory to see just how far I’ve come. 💚
Sweet dreams from The Cheney Zoo.🌛 . I'm getting this jailbird settled so we can all get some rest. 💤💤💤
This has been my motto recently! I have been surrounded by EXTRA BS to the point where my life could be a reality 📺 show. * * DEEP BREATHING is something I have to remind myself often. Which is SOOO ironic because I have been also having breathing issues. * * I have learned to COPE with so many things but you just can’t do much when you aren’t able to take a full breath🤪 * * EXERCISE keeps me leveled headed and there isn’t anything MORE frustrating for me than not being able to do my workouts 🏋️‍♀️ . * LUCKLY, it’s temporary and I am slowly getting back into the grove. PLUS, I am becoming even more of a #mastermodifier 🙋‍♀️ . * * * * * * #femalehustler #girlbosslife #motivation #justdoit #iworkout #beastmode #dreambig #thesweatlife #youcandoit #bemindful #gowithin #spoonie #mastcell #pots #eds #asthma
Red Blood, Dendritic, and Mast Cells together! Shutocon is gonna be LIT!!! We will meet White Blood, Memory, and Killer T Cells on Saturday! 🥰 #shutocon #cellsatwork #hatarakusaibou #mastcell #dendriticcell #redbloodcell
I am so thankful for the new friends I have made and come close with who also struggle like I do with mast cell and chronic illness. I won’t call out people here or put them on the spot, but thank you for being amazing and open and listening! A strong support system is key, not only your family and loved ones, but those who know what you are going through ❤️
Happy First Day of Spring! 🌱🌷🌼 Can't wait until I can be outside again 😊 I thrive on sunshine and being in nature, so I'm counting the days until I can do that again. I hate winter! PS thanks @liss.ms for reminding me that it's the first day of spring and bringing some cheer to my day! . . . . . . . #spring #firstdayofspring #sunshine #nature
march is also autoimmune disease awareness month! while EDS is not autoimmune (a common misconception) i do have secondary autoimmune rheumatoid arthritis. this comorbidity itself sure isn’t my most problematic, but finding medications to treat my RA has been quite the challenge. RA is typically treated with low dose chemotherapy agents and/or immunosuppressants, both of which have caused me lots of issues. my last hospitalization was due in part to methotrexate, as it exacerbated a virus in my stomach lining. another RA medication we tried caused me to have rapid hair loss. which has lead us to drug number four, sulfasalazine, that i take four times a day. even mild cases of RA, like mine, need to be treated aggressively, as one bad flare could lead to permanent disfigurement. did you know that one in five people have an autoimmune disease?
It has been a day. The daylight savings change is hard on me for one big reason - my quiet mornings are gone. Before, JD would do his morning routine and leave everything for me while I slept - so by the time I woke up he would already be at work and I'd start my day slowly. Now I'm waking up around the time he's just beginning his morning and it's extremely overstimulating. Even if I have my ear plugs in and my eye mask on I can't block it out. I get overwhelmed and sensory overloaded. . . This morning he was talking to me (through my ear plugs) about the dog's eyes to see if we should cancel camp. I got super confused and disoriented and panicky and just had a total meltdown. I couldn't communicate. My brain felt like white noise. It took me an hour after he left to uncurl and start my morning. All day I've just been on edge and frustrated. It's also raining tonight so some of this is migraine related - pain is starting to spike now. And we forgot my liquid meds this morning. 🤦 . All in all, I'm just ready for the day to be over. 😴 . . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #ehlersdanlos #ehlersdanlossyndrome #chronicpain #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #lyme #lymedisease #gastroparesis #dysautonomia #disabled #mcas
Fantastic few days at the International Pediatric pain conference, so much so we had to get everything reprinted after just a few hours on day one!! It was also a great trip because after getting a few messages from zebras in Panama I decided to arrange a meet up whilst I was here. It was amazing because almost all of them had never met another person with EDS and it was wonderful seeing them all share their stories and plan how they were all going to work together to improve things for those with EDS in Panama. We have an amazing global community building out there, energised to help us spread our dazzle. I will try and arrange these meet ups whenever I travel to give you all an opportunity to ask questions and meet other zebras in your area. Thanks for a great evening my Panama friends, and for the thoughtful gift 🦓
We each have unique fears, unique situations and unique stories... just like we have unique DNA. Ignoring this is just as harmful as ignoring a symptom. Even with all of the amazing things that healthcare does... the current healthcare experience isn’t helping us live our best lives. •🍊🍊🍊 Healthcare provides average solutions for the average person. And only solutions that got their business model. But none of us are average. We are working toward creating an entirely new environment and culture for the world of health and wellness. That culture and environment is HumanCare. And HumanCare is designed to connect and empower everyone who is a part of it. It’s designed with the understanding that everyone has unique needs. It’s designed to uncover the truth and work for us, the people... not to work for the system. We are working on building HealthBeMe and growing the HumanCare Movement... we all deserve better. We are excited and inspired to grow our ability to fight for everyone. 🐝🍊 #healthbeme #webewarrior #humancare #webecreative #caremore #godogood
"For my 21st birthday, I'm asking for donations to the Ehlers-Danlos Support UK. I've chosen this charity because their mission means a lot to me, and I hope that you'll consider contributing as a way of celebrating with me. Every little bit will help me reach my goal."⠀ ⠀ Huge thanks to Krishna for her Facebook Fundraiser to help us support the EDS community and fight for earlier diagnosis. Create your own Facebook Fundraiser (link in the bio!).⠀ .⠀ .⠀ .⠀ #dysautonomia #mastcell #hypermobility #bendy #fibromyalgia #chronicpain #eds #ehlersdanlos #fatigue #pain #chronicillness #physiotherapy #invisiblefight #hypermobile #mentalhealth #spoonie #raredisease #raredisease #spoonielife #invisibleillness #butyoudontlooksick #chronicallyill #ehlersdanlossyndrome #facebook #fundraising
✨Good News! I didn’t break anything!!! (Which I already sorta knew) but the bad news is that I’m all out of place and bruised everywhere and the pain gets up to a 14/10 without medication. Doctors orders are to ice for comfort, stay on top of pain, and bed rest for at least a week because of the severity of my pain. Looks like I’ll be playing lots of video games from bed. I also need to order the next book in my series📚✨💛 . . . . . . . . . . . . . . . #injury #ouchhh #pain #painpainpain #toomuchpain #chronicpain #chronicillness #heds #eds #ehlersdanlossyndrome #pots #dysautonomia #endometriosis #fibromyalgia #mcad #mastcell #mastcellactivationdisorder #spoonie #spoonielife #spooniestrong #zebra #zebrastrong
I'm not gonna lie, last night was rough with Kona. 😭😭😭. . Nothing is more heartbreaking than a dog that is confused & in pain and you have no way of explaining things to them or making things all better. 💔💔💔. . I'm ever so grateful for a new day. 🌞 Kona is getting up and around more. He's till groggy from pain meds but isn't crying and whining non-stop like yesterday. 🙌🙌🙌. . It is quite challenging keeping Lily from jumping on him and getting Kona to leave his boo boos (5 surgery incisions) alone but this isn't my first rodeo. Mommy's got this! 💪💪💪. . Thank you for all the thoughts, prayers, messages and texts. It means the world to me to know how much our boy is loved. 💗🐶🐾
Hmmm..Lupus patients can’t go out into the sun and we too require Vitamin D! Woah! Am I a Vampire?! There are some days where I’d love to bite someone! 😂 . . #lupus #sle #lupushumor #memes #vampires #vitamind #sunallergy #photosensitive #vitaminddeficiency #chronicillness #compromisedimmunesystem #mcas #mastcell #mastcellactivationdisorder #spoonie #chronicallyraven
Keep your head up princess, your crown is falling! 💞👑💯. - - - - #gastroparesis #tubefed #gastroparesiswarrior #positivity #ehlersdanlossyndrome #POTS #mastcell #narcolepsy
Our family LOVES to hike and can be found wondering in the woods during most of the summer. After a bullseye rash and Lyme scare a few years ago, I started incorporating the herb Cistus prior to hiking as it is known to repel ticks. This mild and sweet tasting herb was an easy additional to our herbal teas, but wasn’t until recently that I discovered the true benefits of this incredible herb. Sardinian Cistus Incanus has a long list of healing properties, but is most well known for its anti-bacterial, anti-mold, anti-viral (lyme, herpes, EBV, HIV, etc) properties and as the foundation of treatment for all chronic illnesses (autism, ADHD, ALS, Parkinson’s, cancer, chronic fatigue, etc). It contains a huge amount of antioxidants, adaptogens and works as a biofilm buster for chronic/ persistent underlying infections. Take a look at this from Dr. Klinghardt and be sure to read/watch his post on it, if you’re interested in more information. “Conclusion: To date, my clinical work with wild harvested pure Sardinian Cistus tea and whole leaf Stevia is the least invasive yet most effective treatment for Lyme disease and many other modern chronic illnesses, caused by persistent and hidden infections.” “So how do we use it? The Sardinian tea leaves are brought to an ultra-brief boil, then simmered for 5 minutes and cooled down. The pot/pan has to be covered with a lid to avoid the escape of the volatile oils from the plant which contain the precious manoyloxides and labdanum – responsible for the powerful anti-Lyme effect. Whole leaf Stevia tincture is not just added to sweeten the tea but for its important anti-Lyme effect. Do not use the commercially available clear Stevia extract! I use the products from KiScience only, which fulfill all of our criteria to tame the retroviruses, mould, Lyme and other bacteria and viruses. The same tea leaves should be re-brewed 2 more times, since other polyphenols and plant adaptogens are extracted when doing this.” https://klinghardtinstitute.com/articles/sardinian-cistus-incanus/ <%22>
✨Soothing Pet Eye Serum ✨ Kota woke up this morning with puffy, pink, itchy eyes from seasonal allergies. He had lots of gunk caked in his hair around his eyes from where it dried overnight. So I did some research and came up with this simple homemade solution to help easily remove dried crusties. Kota typically hates having his eye boogies removed - but with this he laid his head on my lap and happily let me help him out. I also noticed a decrease in the puffiness/swelling after we used it. . Mix equal parts aloe vera and almond oil in a small container and shake well. Apply to a cotton pad or soft towel. Gently rub around the eyes to loosen and remove dried gunk. Do not apply directly to the eye, but it is safe if some strays. Okay for use on both dogs and cats. And if your pet is experiencing symptoms, always talk with your vet before trying home remedies! . . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #ehlersdanlos #ehlersdanlossyndrome #chronicpain #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #lyme #lymedisease #gastroparesis #dysautonomia #disabled #mcas #servicedog #sdit #servicedogintraining #servicedogteam #dogallergies
We are so excited that it’s warming up in Arkansas! We actually get to play outside more. Woot woot. Luna and I will be heading to Mississippi to see our Mast Cell Disease specialist next week, let’s hope the sunshine follows us. 😁
Loving myself has showed me the joys of life. Everyday is a struggle but I choose to persevere above all the $h🌼🌺 and adversities of daily life. I may not feel 100 percent everyday (which all spoonies know, that’s a miracle). Haha, but I choose to see so much love, gratitude, and blessings everyday. If I have a bad day I make sure I do my very best turn it around before the day ends. With all this mindset change; it hasn’t been easy but it’s made my life a lot less complicated. Out of all materials, health problems, financial strains, what’s possible is love and happiness. So remember that everyday. Be thankful and kind. ✌🏽 #spoonies #spooniesunite #ibs #ic #mastcell #showlove #interstitialcystitis #endo #endometriosis #positivity #thankful #choosehappiness #nevergiveup #joy #youhavethepower #enlightened #conquer #ptsd #bipolar #anxiety #changeisnow #blessed #vibes #itsallaboutperspective #loveyou #loveyourself #selflove #mindset #bringjoy #bethechange
Well my occupational therapist told me to STOP COOKING that it is too #DANGEROUS ! What the ever loving fuck is this none sense!!!???? Needless to say I won’t be following these orders. - #FuckYouIWontDoWhatYouTellMe - Roasted carrots, Oyster Mushroom Steaks and ‘stroganoff’ style lentil pasta with garlicky hemp carrot top pesto drizzle 🍄 🥕 🤤 🌱🖤🔥 - - #vegan #plantbased #organic #hemp #plantpower #plantprotein #veganprotein #vegansofig #food #hempprotein #bestofvegan #vegansofig #whatveganseat #disabled #syncope #twitches #eds #mastcell #dysautonomia #butyoudontlooksick #idowhatiwant #fortheloveofcooking #chef #veganchef #nashvillevegan
Smiling is something that I have always naturally done a lot of. But what wasn’t natural was to smile when I was in pain. Or when I felt sick. Because we’re not taught to do that... Smiling signals that everything is going well....so why would you smile when it’s not...? Well, one of the biggest tools that I learned when starting DNRS last year was that smiling is HUGE!! It sends the signal to your brain and body that you’re okay! I learned it was one of my strongest warriors when I wasn’t feeling so great. It took practice, but I soon learned that smiling had the power to push away unwanted symptoms that crept up on me. And now, after seeing firsthand how powerful a smile can be, it’s become second nature! Anytime I suddenly don’t feel well, or have pain, I smile!! There have been times I’m driving home and just beaming the whole way. 😂 But it really works. The bigger the better. 💚
I spiked a fever of 103.9, my norm is 96.7 so it was quite worrisome. Thankfully it’s starting to come down now. I have been admitted to my hospitals ICU Critical Care Unit. Can’t say I’ve ever been there before, at least not for myself. Looks like I’ll be having a TEE (transesophageal echocardiogram) tomorrow morning. Basically it’s like an endoscopy but instead of a camera at the end it’s a tiny ultrasound. They’ll be checking my heart for endocarditis, to see if my heart is infected. That will be followed up by surgery 😕 hopefully things will start to improve after tomorrow. These haven’t been my best days or I guess I could say months and it’s definitely taken its toll. I’m so grateful for my loving and supportive friends and family, I can’t thank you guys enough. Tomorrow’s a new day and I’m keeping my spirits up. • • • • • #lifeofcailin #hospitallife #icu #criticalcare #ccu #bloodinfection #sepsis #cvid #chronicillness #mastcell #mcas #warrior #iaminvincible #zebra
Hi friends, I won’t bury the lead here, but will tell the story after for anyone who is interested. Piña had a mass removed a little over a week ago, and it is a Mast Cell Tumor. . Okay, now for the more detailed version: We almost didn’t have this mass removed because we thought for sure that it was a lipoma or fibroma, and I didn’t want her in unnecessary pain for a benign lesion removal. She needed a dental, and the vet said there was a very slight chance this could be MCT, so he recommended removing it. We agreed, and so it went. He cut through the middle of it with the laser, and found it had a malignant appearance, so he backed out and did a surgical excision with an additional margin of tissue. The path report graded it as a Grade 2, moderately differentiated tumor, which has a median survival rate of 2+ years. Lymphovascular invasion was not observed, but no lymph nodes were submitted. The margins are clear, but barely (1, 1, 2, 3, and 7 mm). Our vet has advised us to just keep a close eye on her and be aggressive with removing any further masses. . Please know that I adore my baby girl and do (and will continue to do) everything in my power to ensure that she is comfortable, happy, and feels loved. ♥️💙♥️
We cannot recommend this show more. #shrill #huluandchill 5 out of 5 🥄’s ! 🍬 Shrill is like a giant, beautifully colored piñata. It’s full of candy and joy, but you also get to whack the crap out of it and get out all your frustrations. In the end it is an entirely yummy and cathartic experience. 🍬 Shrill follows Annie - a PP (pleasantly plump) woman as she finds her voice and takes on ALL the A-holes. It is funny, full of heart and relatable. For us spoonies we can definitely relate to all the little comments and barbs from people who have no clue about our struggle and situation. When Annie ( @aidybryant ) takes them down, it feels like a win for us as well. 💪🏼 🍬 Check out the link in the bio for the full review and bellow for the breakdown of how it rates as sick day show. . . . . . . . . . . . . . . . . . . . . . . . . . . . . ————————————————- Show Rating Overall - 5 out of 5 🥄’s Feel Good Rating - 5 out of 5 😁’s Lol Rating - 4 out of 5🤣’s Good Message Rating - 5 out of 5💪🏼’s Romance Rating - 1 out of 5💓’s ————————————————- Dark Levels - 1 out of 5 ☠️’s Sad levels - 0 out of 5😢’s Sickness reminder levels - 0 out of 5🤒’s 🍬 Shrill Receives near perfect marks when it comes to taking you away and lifting you up. 💓
Alot has been going on health wise since my last admission for septicemia. I’m back in the hospital for septicemia and will update more when I can. • • • • • • #hospital #hospitallife #beingsicksucks #bloodinfection #septicemia #CVID #pi #mastcelldisease #mastcell #mcas #autoimmunedisease
“we cannot keep teaching people who are sick that they need to be healthy before they live their lives.” - claire wineland
‘Education is the most powerful weapon which you can use to change the world...’ -Nelson Mandela 🌎 Re-reading one of my favourite books by the fabulous @nutrition_facts_org (Dr Greger). 🌎 With fields of expertise like nutrition, you can never stop learning. New research comes out every hour of every day. Although tonight I am going back over an old fave, every single day is spent checking the relevant medical journals for all the latest information. 🌎 Keeping current is vitally important. 🌎 For more information on our services, contact us today. 🌎 #theallergyconsultancy #stopallergypoverty #allergymentor #nutritioncoach #naturalfood #naturopathicmedicine #letfoodbethymedicine #allergies #cmpa #nutallergy #peanutallergy #soyaallergy #glutenfree #eggallergy #coeliac #crohns #colitis #IBD #MS #ME #CFS #chronicillness #mastcellmadness #mcas #mcad #mastcell #hownottodie #vegan #plantbased #dailydozen
Spring is here and that means it's wildlife rehab season! 😍 I have my space all prepped and ready. This is one corner of the critter room with two big storage cabinets for all my animal supplies, my rehab desk and drawers, and room for an additional table to hold cages. We picked up my supplies a few weeks ago - medications, formula, syringes, etc. The third photo shows all the assorted meds and treatments I keep on hand. . I'm licensed for small mammals and reptiles, but I chose what animals to take in and when. I've taken my name off the public list so I only get animals from other rehabbers instead of getting hundreds of phone calls from the public every day. Right now I'm open to taking mice as they take about two weeks and I can easily keep them with me in bed on my nightstand. But primarily I'm hoping to do some baby bunnies as they do not require overnight feedings (which I'm not currently able to manage). They're a great option for me because they only require two feedings a day and quickly mature. . . That said...I know that two feedings a day will still be a lot for me, so I want to start small and hopefully set myself up for success. I'm going to wait until it gets a little warmer so I see how my body is holding up to the weather change. If I'm passing out left and right, then it probably isn't the best idea to add rehab animals on top of that and expect myself to be able to physically manage everything. Everything in me wants to say yes and just jump right in...but that's how I used to live. Now I have to be much more cautious and calculated about what I choose to take on. . . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #ehlersdanlos #ehlersdanlossyndrome #chronicpain #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #lyme #lymedisease #gastroparesis #dysautonomia #disabled #mcas #wildliferehab #wildliferehabilitation
According to @drphil #100outof100 relationships that involve caregiving will fail. Up until 5 years ago this was my fear. At some point my EDS has always got in the way of previous relationships. It scared people. I was in hospital too much. I had too many surgeries. My worse fear was always that I would be a burden to whoever loved me. I felt threatened by every healthy ‘normal’ person out there. My worse physical days made me feel so insignificant and weak, and not just physically. When I met my wife I realised that it wasn’t because I have EDS that these relationships failed, it was because they weren’t my person. When you find your person they love all of you. Your strengths and the weaknesses that give you your strength. It’s media like this that perpetuates this fear in people who have a disability or illness. But know this, there is a lid for every pot, a person for us all - and they will love you and care for you through it all. So, Dr Phil, this is what I have to say to your theory🖕🏻
Gonna be posting this a lot. So far we've raised $230, which is almost 10%, which is amazing. Izzy was diagnosed with mast cell cancer. We had a Prednisone shot done, which has worked wonders but while I'd love to fool myself, it won't completely get rid of it. With bills, and my mom's own medical issues, we really need the help. Please, please help my bebs. Link in bio. #dog #dachshund #blue #heeler #weiner #cancer #mastcell #tumor #cute #medical #surgery #help #fluffy #gofundme #donate
“God always puts the right people in your life at the right moment.” I have known this angel @smfurno since I was freshman in high school, and today for the first time in 13 years we got to see each other at our doctor appointment! Over the last year or so we have grown closer and God led us back to one another. Since then, she has transferred her heart care to my doctor in Miami during such a critical time for her as I urged her to give my doctor a try. For me, God put her in my life when I felt so alone and so frustrated with the never ending diagnoses and surgeries/procedures. Every time I feel like everything is too much I remember Stephanie, how she pushes through each day and is such a testament of Jesus. I could be feeling like complete crap and just a simple check in text from her or a funny chronic illness meme can totally lift my spirits. She gets it, and I get her. We had no idea each other was going to be at Dr. Ds today, and it was EXACTLY what I needed. Her heart may be weak, but it is the biggest and sweetest. Love you my sweet friend. 💜 Ignore my awkward face, I was trying to not laugh at the sweet old lady trying to figure out how to take a photo. #chronicillness #chronicillnesswarriors #fellowspoonie #fellowwarrior #biggestheart #myfavorite #overcomers #justkeepswimming #spoonies #invisibleillness #heartwarrior #loveyou #afib #atrialfibrilation #atrialflutter #posturalorthostatictachycardiasyndrome #dysautonomia #autonomicdysfunction #mastcell #ehlersdanlossyndrome #celiacdisease #superiormesentericarterysyndrome #tubie #anemia #pectusexcavatum #supertubie #malabsorption
I crawled into bed to comfort my Kona boy. 🐶🐾. He's having a rough time coming off anaesthesia post surgery 😭😭
When you believe something deeply it is easy to make it a priority. With this #mastcell life, I need slow, too. #mastcellactivationdisorder #mastcellmama #earlychildhoodeducator #kidsneedslow
⁣I am SO excited to be joining @rideoutlyme April 7th in Boston to raise awareness for Lyme! ⠀ ⠀ Y’all the last time I road a bike was at Cardiac Rehab ... still haven’t made it to the gym ... but that isn’t about to stop me from supporting a cause that is part of who I am! ⠀ ⠀ I’d LOVE for you to join my team! You don’t have to be there to help, sharing our fundraiser and donating would be a HUGE help! ⠀ ⠀ If you’d like to be one a part of this incredible team and help make an impact send me a message! 💚 ps. We have AWESOME raffles that will be going on you definitely don’t want to miss out!
🎵Where the deer and the buffalo roam🎵 Had an #earlymorning #doctorappointment @umichmedicine at the #mastcell #specialtyclinic . Yup...I have #mastcellactivationdisorder . Had some #labwork drawn to do a blood #allergytesting before we decide if I need to go off my meds to do full #allergyskintest . Most likely won’t need a #bonebiopsy ...#phew ! At least there is a #treatmentplan ! But I’m #exhausted ! Leaving at 5am SUCKS! Night night my loves and lovers!
Guess what was coming today? My E-Fix E35 wheelchair♿! I can't believe it. A wheelchair is not the end it's the beginning. It's not a symbol of restriction. A wheelchair is freedom. It gives us the chance to leave the bed, the house. It gives us the chance to live. It allows me with a range of issues to enjoy things that otherwise I couldn't enjoy it because of my chronical illness. For the first time I could "take a walk" with my husband. Since one year we live in a new appartement close to a nature reserve. And now with my new wheelchair "Speedy" I can reconnoiter the area. It was such a nice feeling without thinking about what happens if my POTS gets worse. So welcome to my family Speedy. I hope we have a nice time together. I'm excited for the adventures my speedy will bring me. . . . . @ehlers.danlos @ehlers.danlos.syndrome @ehlersdanlosuk . . #chronicillness #chronicfatigue #chronicpain #invisibleillness #invisibledisability #spoonie #spoonielife #spooniefamily #spooniestrong #POTS #TMJ #CCI #eds #heds #MCAS #mastcell #gastroparesis #dysautonomia #hypermobility #ehlersdanlos   #ehlersdanlossyndrome #dontjudgeaperson #dontjudge #alwaysfighting #mylife #zebrastrong #everyBodyisbeautiful #butyoudontlooksick #fightlikeawarrior #chroniczebra
We have over 50 local support groups across the UK, all run by fantastic and dedicated volunteers. Meet with peers, have a coffee, make friends and find support.⠀ ⠀ Find out more about your local Area Coordinator and details of the upcoming meeting in your area, on our website (link in the bio).⠀ .⠀ .⠀ .⠀ #dysautonomia #mastcell #hypermobility #bendy #fibromyalgia #chronicpain #eds #ehlersdanlos #fatigue #pain #chronicillness #physiotherapy #invisiblefight #hypermobile #mentalhealth #spoonie #raredisease #raredisease #spoonielife #invisibleillness #butyoudontlooksick #chronicallyill #ehlersdanlossyndrome #support #supportgroup
#snowshoveling 1 year post lyme treatment, took me awhile and lots of breaks but I did it! Still conquering: #bartonella #babesia #mastcell #autoimmuneencaphalitis #pots #cirs
✨goodnight my beautiful friends, & remember that it’s okay to NOT be okay & to speak up about it💘 I’m definitely not okay today, but you know what? I’m going to get through this..& whatever it is that you are going through, you’ll get there, too✨💛 Okay, GOODNIGHT BEAUTIES❤️ You all mean so much to me. Thank you for being here😘 . . . . . . . . . . . . . . . . . . . #goodnight #sleepytime #itsokaytonotbeokay #chronicillness #chronicpain #pain #dislocations #subluxations #heds #eds #ehlersdanlossyndrome #endometriosis #fibromyalgia #anxiety #depression #ptsd #disassociation #depersonalization #mcad #mastcellactivationdisorder #mastcell #spoonie #spooniestrong #zebra #zebrastrong
ASK ME ABOUT MY PORT...or DON’T. 🤦‍♀️ When I was sporting my port I had people come up to me all the time asking things like did I get shot? Did I have cancer? What happened? And as an advocate I often felt compelled to take each interaction as an opportunity to educate. But other times, your girl was just trying to eat a damn sandwich in public! 🙅‍♀️ So I finally decided to create business cards that answered some frequently asked questions and guided curious inquiries toward my website. Would you ever excuse yourself from the conversation with a “curiosity card”? 😉 #patientadvocate #curiositycard #ilanajacqueline #chronicillness #dysautonomia #ehlersdanlossyndrome #ehlersdanlos #mastcell #cancer #infusions #port #ports #spoonie #spoonies #autoimmune #ceiac #ibs #feedingtubes #ostomy #patients #healthcare
For so long I described myself as “living my life on pause.” It was always something... First I missed out on my teens being sick with Lyme disease, and experiencing junior high and high school from my bedroom, instead of out in the world. Then it was doing intense mold treatment and being stuck inside my apartment for 13 months, unable to go anywhere... No buildings. No stores. Then it was my brain not communicating with my body, making it so any amount of exercise or adrenaline would literally turn off my arm, making me lose all control of it. ...And then today, as I was scrolling through my newsfeed, I saw someone say that their life is on pause... And I realized that my life has been un-paused for quite some time!! 💚 This past year I have completely regained the ability to eat normal foods without feeling sick. I have traveled—gone all the way to India! I have become more physically fit than ever in my adult life, doing aerial fitness classes, bungee fitness, Krav Maga self defense, and hiking! I have taken control of my health for the first time in my LIFE, and for the first time ever I’ve learned what it’s like to be able to rely on my body, and consistently feel healthy day after day. I never thought what I have now would be my life. In fact, I told myself that it was okay... It was okay to dream small, and it was okay never meeting those dreams... But not now. This chick is really diggin’ this un-paused movie she’s in... 💚
Dinner doesn’t have to be complicated or fancy... this was all made in 10 min! . Salmon - wild caught salmon from @wholefoods that I pulled out of the freezer earlier in the day. Drizzled with Olive Oil, sprinkled with Sea Salt flakes and Pepper. Bake 400 for 8-10 min. . Green Beans - frozen organic green beans tossed in a little Avocado Oil and @primalpalate Breakfast Blend Seasoning. Air fryer at 390 for about 9 min. . Cauliflower Rice - frozen Cauliflower rice cooked in a skillet over medium heat with Avocado Oil, Salt and Pepper for about 5 min. You could add chopped onions and garlic but I didn’t feel like messing with it. . . It doesn’t get much easier, tasty and healthy 👍! What’s your go to quick meal? If you saw my stories, the kids had @jovialfoods Gluten Free Pasta with @raoshomemade Marinara Sauce and edamame. . . #quickdinner #easydinner #paleo #glutenfree #grainfree #dairyfree #salmon #airfryer #airfryerrecipe #wholefoods #primalpalate #jovialfoods #raoshomemade #cirs #moldillness #mastcellactivationsyndrome #mastcell #allergies #foodallergies #cleaneating #cleanliving #cleanbeauty #clrw #cleanliferealworld
Why yes I did scrub my hair with mud this morning. This is my new homemade shampoo - it's a blend of rhassoul clay, aloe, jojoba oil, cedarwood EO, rosemary EO, and tea tree EO. It needs to be refrigerated and I could put it in a glass jar because I do my hair at my sink - glass is not safe in the shower. . I used it earlier and it worked pretty well! Because I only wash my hair a few times a week I end up with a lot of build up which the clay helps remove. The essential oils are also great for build up, itchy/dry scalp, and overall hair/head health. I'm not sharing the exact recipe because I'm not quite happy with the ratios yet (bit too much jojoba), so hopefully the next batch will be perfect! I'm working on replacing most of my store bought stuff as it's a lot easier to manage my allergies and sensitivities when making things myself. . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #ehlersdanlos #ehlersdanlossyndrome #chronicpain #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #lyme #lymedisease #gastroparesis #dysautonomia #disabled #mcas #diyshampoo #rhassoulclay
Flushing is one of the hallmark symptoms of mast cell disease. When mast cells are activated they release chemicals called mediators (see previous posts for more), some of which can make blood vessels relax, which causes them to enlarge and get closer to the skin - the blood is now closer to the skin, so the skin looks red. Like most symptoms, it looks different from person to person and day to day - different areas, more or less red, etc. (It often looks worse than this for me, but this is the picture I found). . Flushing for me is a sign that my body is very angry, and it usually goes along with a bunch of other unpleasant symptoms. Although it does often cause my face to feel like it is on fire, it is not a life altering symptom compared to my other problems. It's more of a sign that something is wrong, and as a matter of fact it is one of the symptoms that might cause a doctor to look at mast cell disease as a diagnosis. Unfortunately, patients often don't even think to mention it (I didn't, I just thought "my face gets red sometimes") so it gets overlooked. . Do you experience flushing as part of your mast cell disease? Tell me about it.
Keep voting for us once a day for the FedEx Small Business Grant Contest! Link in our bio 🐾 #fedex #thinkoutsidethebox #teenageentrepreneurs #smallbuisness #doodlesofinstagram #goldendoodle
Posted @withrepost@benjamin_field Shooting 'The Girl Who's Allergic to Herself' is remarkable. Thanks so much to @britishgymnasticsofficial for allowing me to film with @natashacoatesgb as she competed at the @mandsbankarena this weekend. The pictures tell a tale of how the weekend went... @fredvoortman now believes he is free of me and my interviews... He's wrong. 😜😂 . . . . #producer #director #filmmaker #filmmakers #filmmaking #film   #videoproduction #filmproduction #indiefilm #documentary #production #videography #filmdirector #videographer #video #filmmakerslife #filmlife #featurefilm #supportindiefilm #birmingham #westmidlands #Nofilmschool #independentfilm #directing #mastcell #disabilitygymnast #natashacoatesgb #tashacoates #gymnast #warrior
Shooting 'The Girl Who's Allergic to Herself' is remarkable. Thanks so much to @britishgymnasticsofficial for allowing me to film with @natashacoatesgb as she competed at the @mandsbankarena this weekend. The pictures tell a tale of how the weekend went... @fredvoortman now believes he is free of me and my interviews... He's wrong. 😜😂 . . . . #producer #director #filmmaker #filmmakers #filmmaking #film   #videoproduction #filmproduction #indiefilm #documentary #production #videography #filmdirector #videographer #video #filmmakerslife #filmlife #featurefilm #supportindiefilm #birmingham #westmidlands #Nofilmschool #independentfilm #directing #mastcell #disabilitygymnast #natashacoatesgb #tashacoates #gymnast #warrior
Two years ago I started home infusions to better control my HAE. Two years! I can hardly believe it. For two years a home health nurse comes to my house every three days to help me infuse some of my meds and maintain my port by changing it weekly. I’ve had a needle in my chest nearly every day since beginning these prophylactic IV infusions and using rescue IV meds for my HAE. It’s strange thing being ‘plugged in’ all the time. Having a needle in me, a tube coming out of it constantly hanging out on my chest, having to deal with the maintenance having an accessed port requires, and all that. But you know, overall I’m really grateful for this life line! Not to mention the amount of relief it gives to Jon and I. Having it allows us to infuse IV medications whenever I need them. Medications that often, literally save my life, and help keep me from needing to go to the hospital so often. It’s truly incredible to think about how all this has played out over the two year. It’s a lot yes, but, it’s awesome to realize how much life I’ve gotten to live because of it all!! ❤️
My stripes are showing 😄 Went an hour south to the capital for a cardiac ultrasound and 24-hour Holter monitor today, and we dropped off my 24-hour urine collection for some mast cell testing on the way home. I wonder if anyone in the hospital noticed my urine specimen jug was being carried by a moonshine cooler 😆 Maybe one day I'll be able to partake again... . #redneckroots #liberalredneck #hillbilly #olesmokymoonshine #lilmissmoxy #smokymountains . #cardiovascular #holtermonitor #ehlersdanlossyndrome #eds #hypermobility #mastcell #vascularfragility #dysautonomia #neurocardiogenicsyncope #mitralvalveregurgitation #tricuspidregurgitation
St. Patty’s day lands in the middle of MS Month. So this is us giving a shoutout to all of those Irish ☘️ warriors who are part of the MS Community. Kiss Me, I’m ill-ish. This is intended to be a creative way to honor and salute those people... we not discounting the seriousness of MS. Much love to all of our friends from the MS Community #mswarrior #stpatricksday #webewarrior #healthbeme #humancare #msawareness 🍊🍊🍊🐝🐝🐝
A new DNRS friend of mine said something today that really resonated with me. We were discussing ways of reframing situations in terms of DNRS and brain retraining. And she said what she would do when her brain would start going down the wrong path was to say “change the channel.” That’s so important when retraining your brain! Change the channel! If you are thinking, “I am reacting to this chemical” ...change the channel. Think about how fantastic it smells...make it up! Or if you can’t do that right now, change it altogether to something else. Think about how great your dinner is going to taste. Think about coming home and seeing how excited your dog will be to have you there! 💚 Whatever you do, whenever you realize your brain is being used in a way that isn’t going to help you...change the channel. You have the power to do that.
Look at that cutie dood in a snood! 😍 We went to Petsmart today for some supplies and training. He was excellent the whole time - we worked mostly on our wheelchair heel, engagement, and focus. I put the snood on about halfway through and left it on for the rest of the time. We're working on getting him used to it and comfortable so we can use it as a bit of ear protection in the future. We're also working with our mutt muffs but stuck with the snood today. While I was putting it on him some lady came up and started cooing at him so I just repeated "please ignore him, thank you" over her five times until she got it, apologized, and moved on. He did well ignoring her, though! . We stopped for a quick Target trip, too - his first! He did so so well. We worked through a little skittishness at seeing mannequins for the first time. He took in the busy environment pretty calmly! He started losing focus at the end, especially as he saw JD check out and go put stuff in the car. We're always working on his responses to seeing JD both at home and out, as he often gets overexcited and loses touch with whatever I'm asking. We had to stop and investigate the big red balls outside as they were a bit scary at first, but a few moments later he was happily putting paws up on them for treats. . . Overall I'm super pleased with how he did and how we were able to work through things. That confidence is growing every time we go out! And I'm really happy with how well he kept working with the snood on. He's not a dog that particularly enjoys wearing things, so it's always a process to ensure he's comfortable. . . #spoonie #spoonielife #chronicallyill #mastcell #POTs #potsie #eds #ehlersdanlos #ehlersdanlossyndrome #chronicpain #edstype3 #hypermobileehlersdanlos #migraines #hypermobileeds #fibromyalgia #chronicfatiguesyndrome #chronicfatigue #ehlersdanloszebra #chronicmigraines #lyme #lymedisease #gastroparesis #dysautonomia #disabled #mcas #sdit #servicedogteam #servicedogintraining #servicedog #labradoodle
One trick that really helped me to distract my brain when first starting DNRS, was to pick a letter and rapidly name words that began with it. At the beginning, I would need to wear a face mask while walking past this one chemical-filled hallway at work. As soon as I learned this trick, I used it each morning while walking down that hallway. I would focus so intently on saying the words as fast as possible, and not allow thoughts of my burning face and hands, while making a mad dash for the exit. Each day it got easier, and soon I was able to go down that hallway without a mask. Every morning I was able to make it to the other side with less and less of a reaction. Until one day I was busy with my phone. I got to the other side and realized I had forgotten to pick a letter. 💚 And from then on, I didn’t need this amazing tool to walk down that hallway. This remains one of my favorite DNRS tools to use when I need a little help distracting my brain from using an old, broken neural pathway. 💚
Travelling round to sometimes incredible places is often irrelevant as usually all I get to see is the airport, hotel and meeting or conference venue. Today was my only chance to see Panama, and I’m so pleased that I forced myself out of bed this morning and explored. I started the day preparing the booth for the conference tomorrow and then headed to the old town for brunch. The architecture was stunning. I then hired a bike and cycled along the Amador Causeway. It was sooooooooo hot and humid but it felt great to be a tourist for the day and have some much needed rest and relaxation. Now, to make my parents happy, I am going to spend the rest of the day in the shade by the pool listening to some podcasts (my new favourite thing when travelling btw) I hope you have all had a happy weekend 🤘🏻
‘What good is anything and everything, if it’s not spent with the people you love’ 💕
I absolutely adore this sweet boy! Riding lessons with Jax are the highlight of my week. 😍💕 - I had to miss a couple of lessons due to my admission and just being sick, but with my tube, I am slowly getting my energy back and feeling better! Last I checked, I’ve already gained 1.5 lb.!! I still cannot tolerate food without the same symptoms. However, this tube alleviates the issue of having to eat and be in pain, so I am doing SO much better pain-wise. I miss food a lot, but getting nutrition without pain and having energy is a huge blessing. I follow-up with GI on the 28th, so we will see what they decide to do from here on out. I’m so excited with how much I am already noticing a difference! 😊 - #ehlersdanlossyndrome #eds #heds #hypermobility #hypermobile #posturalorthostatictachycardiasyndrome #pots #dysautonomia #mastcellactivationdisorder #mastcell #systemicmastocytosis #giissues #undiagnosed #butyoudontlooksick #invisibleillness #chronicillness #chronicpain #horsebackriding #ngtube #tubie #feedingtube
Hey guys, according to my time zone, it's Day 02 of CaW Appreciation Week already! So, here's Day 02 with the theme: 'Dendritic's album' (so basically an embarrassing moment) I like Mast Cell and B Cell together! UwU Also, this is a shameless re-draw of a Shinji and Asuka scene from Episode 11, but with the angle flipped! And as you all can see, I am stuck in the 90s. The colour scheme... The figures. Everything, man. I promise some NGE stuff soon! I have a LOT of Eva WIPs lol. #cellsatwork #cellsatworkfanart #artistsoninstagram #artistsoninsta #bcell #mastcell #dendriticcell #hatarakusaibou #anime #manga
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