#gastroparesis

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Day 19: BOUNDARIES. Where do you draw the line? Using “No” as a complete sentence is a great place to start. Politeness of course matters but no explanation is required. No thank you. No, I’m not interested. No, I’m not available. No. 😊 Keep some time for yourself. Rest. Heal. Socialize or not. Enjoy! 👏 Tag us in your post! #teamdaf #selfcareseptember @dysautonomiasc to find you easier * * * #dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis #sickofbeingsick #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
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Writting personal statements are so hard with little self esteem :( Todays been okay so far, had a music lesson, went to have my blood pressure and weight checked, went to class and now just trying to put aside my stress, self hate, worries and frustrations and write a possitive, memorable and interesting essay about why I'm "such an amazing musician" ... To me im just ordinary l, if anything less than average. I know conservatoires are all down to the audition, but this is still very stressful. So I'm gunna rest my head on the table until im awakened by my friend telling me to go to my next class. #tierd #depresstion #anxiety #ed #gastroparesis #slowlyrecovering #fighting #pots #collage #student #music #mentalhealth #chronicillness #chronic #conservatoire #sleepy
Feel like shit #gastroparesis
I know I have posted this picture before but I wanted to send a message to my friends and other suffers. I get a lot of people asking if I’m better and the annoying part is no 😩 the pain and symptoms are getting worse. I’m learning to live with Gastroparesis and trying to ward off having a feeding tube. I’m letting my body let me know what I can and can’t do. And now new illnesses are being found which amazingly I’m pleased about! The not knowing where my Gastroparesis came from in the start has been the biggest fight of my 30’s. Now I know a connective tissue disease has been found and this could be the cause. So if you suffer with GP make sure you ask for the Connective Tissue Disease test. I’m being sent to the London hospital of Neurology as my symptoms now arnt just eating it is trouble breathing / swallowing / Paralysed stomach and muscle weakness in my arm. The muscles we expect to work for us every day they are failing me. To other suffers: I have noticed a lot of Gastroenterologists don’t know the Neurology hospital in London is available so please enquire. Love to those who are suffering 💗 And thank you to my friends and family for your love and support 💗💗 #gastroparesis #connectivetissuedisease #hope #chronicillness
Still over here working on fitness goals. Just a quick update on the health status since it’s been a while. Still fighting, but with a much better mind frame than earlier this year. Makes a world of difference when you have a great team of doctors and an encouraging tribe of people to help through even the hardest days. I will say my strength is so not where it used to be. I feel so weak but despite I push through and I do it because it’s therapy and helps me tremendously with my mindset and keeping a positive outlook. So a special thanks to all of those that have encouraged me throughout this battle. It means more than you know! Have a great day! #healthjourney #fitnessjourney #fitnessgoals #gastroparesis #fitmomof2 #fitmom #healthgoals #positivevibes #mindset #fitnessmotivation #strongisbeautiful #girlpower #mompreneur #charleston #mtpleasant #isleofpalms #sullivansisland #follybeach #saltlifeproperties #neversettle #neverquit #perserverance #perspective #resilience
I’ve had enough of mystery pain, not knowing what’s going on and people acting like it’s Ll in my head. I’m done, I don’t want to keep looking for answers. 😪
Had SUCH a positive appointment this morning 💪🏼 More to follow on my blog on Friday 😋
🖤🐼🖤 You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can’t get up to do anything but go to the bathroom. It is not your fault if others leave you because of your illness. It is not your fault that you are sick. You don’t have to apologize for something that’s out of your control. - - - #gastroparesis #POTS #IBS #EDS #GERD #chronicillness #invisibleillness #chronic #gastritis #sick #sickness #illness #sad #depression #chronicmigraines #ulcerativecolitis #depressed #frustrated #hope #faith #selfie #bored #ugh
Let people know what lupus experiences can be like for some who have it. Join us this October to spread awareness #lupusawareness ..... • • • • • #lupus #lupusawareness #lupuswarrior #lymedisease #chronicfatigue #chronicpain #gastroparesis #chronicillness #invisibleillness
2 minutes qui me grillent des heures d’énergie, mais qu’est ce que c’est bon !! #badboychallenge #dancechallenge #piccline #alimentationparenterale #tubielife #gastroparesie #gastroparesis
I truly don’t care if this rots my insides, it’s just delicious 😋 • For breakfast I had a shake, a banana and some nuts • Still on the smaller/lighter/more liquid based meals (although I find this hard as I still am getting hungry, but when I eat a proper meal I feel so disgustingly sick and full!) • I am seeing a specialist next month to work out what is going on, it seems like my bowel just doesn’t work properly (to me it seems like it’s been switched off!) but I fully expect to be fobbed off with #ibs#lilt #totallytropicaltaste #gastroparesis #stc #slowtransitconstipation #tummytroubles
Chronic pain is hard, it’s really really hard. I am struggling majorly at the moment with a pain flare up, and no matter how “used to it” I am, it always knocks me for 6 🌸 I am proud of myself for how strong I have become through fighting pain and illness every day, but sometimes it’s okay to take a step back and admit that we aren’t always strong, and that we aren’t alright 💕 #chronicpain #awareness #struggling #flareup #gastroparesis #cipo #eds #dtp #dysautonomia #pain #strength #resilient #loveyourself #selfcare #notokay #tubie #keepfighting #bossbabe #onestepatatime #health #wellness #lifestyle #holistic #westernmedicine #doingmybest #agony #myreality
(Is it a bit sad how much I love this flavor? So I've been taking beech-nut baby food stage 1 (and this one floor in stage 2, but stage 1 is easier) and breaking it down even further, pureeing it with core water then dividing them into small jars and basically making baby food icy's....I can still only keep it down on very lucky days, but they are delicious....if only it stayed down...😢😧) Last week and this week has been so freaking crazy. With both good & bad, a lot of bad though. My mom is driving me crazy and is absolutely no help at all,my family never has been but she's getting worse 😧 HOWEVER, she's not ruining today because I'm heading up to williston,FL and checking in/settling in today because tomorrow- I'm officially being paired with my SERVICE DOG 😊😭 and that is such a major,major blessing that I keep praising the Lord for. As for my (continually declining) health, I'm just trying to get through each day until the doctors *actually* do something 😒😂 I have testing days Oct.11th-13th but until then I guess I'm on my own,as always 🤐 so yeah, I'm going to be training until the 29th with my SD (in my wheelchair, because I'm now completely bound, like 100% if I even take a few steps I fall.....) so I most likely won't be posting alot, but I'll definitely share a picture when I'm paired. Just keep taking it moment by moment warriors...that's all we can do, sending love & prayers everyone's way.....🐶 P.s- I've been slowly drinking cap fulls of core water (2oz at most) to try and make it easier, I can still only have certain mount of liquid oz, and 1 icy (if I'm lucky) but I'm still bringing it back up,everything like I've said from the top of my esophagus all the way to the colon/rectal 100% paralyzed. So I just don't know know what to do, I can't get down medicine, food,liquids, and it's only worsening...😩 any ideas?
please help. they came back when I was vomiting heaps and now they're getting worse even though I'm vomiting twice a day or less, sometimes not even every day. I'm not vomiting on purpose :( I promise. I'm just nauseated intermittently. what do i do? Internet says its a yeast thing and i need steroids, but im pretty sure it's BURNS from stomach acid. i use bonjela when they're particularly sore, but I'm not sure if it's making it worse because it stings when I put it on. then I use pawpaw ointment to soften the skin. i try to apply pawpaw ointment once at night only so the wounds can dry out while I'm asleep. is #destressing the only way to solve this? #nausea #gastroparesis #chellitis #angularcheilitis #chellitis #sores #bonjela
Buenos días desde mi hotel de lujo a pensión completa 👌❤️ - Good morning from my luxury hotel full board included (@laaili_la ❤️) . . . #hospitalvalldhebron #amanecer #paciencia #nuevahoteldelujo #hotelapensioncompleta #disfuncionestomago #motilidaddigestiva #warrior #chronicdisease #raredisease #gastroparesis #GP #dispepsia #healthfight #everydaycounts #stepbystep
I have been feeling kinda shitty. ( I forgot to put on mascara and a nose ring, big deal for me) Very depressed, lots of pain and just over all blah. I think it's just the shift of the seasons. Sometimes you have to sit back and just be glad your still fighting a good fight and I'm lucky to have so many of you reach out with great ideas and solutions! Round 100 here we go! #gastroparesis #gpwarrior #spooniesofig #silentsick #prettysick #bpd #FM #spoons #chronicillness #stoned #bipolar #nyyankees #girlswithtattoos #stonerchicks #browneyes #driving #gingermane #safteyfirst
3 appointments knocked out in 1 day 👊🏻💪🏻😎 -My neurologist is an absolute badass and has done so many great things for me! You are amazing Dr. Oh!! ❤️ -Spoke to my knee surgeon! I don’t need to wear the brace as much anymore, like when I’m just hanging out at home. But I need to keep wearing when I am going to be doing a lot, or being on it a lot or at all times that I’m working. He did say it’s up to me on whether I want to start delivering again (on my own)..so I finally have the green light to get back to work. Or at least this job for now until I find something less physical 🤷🏻‍♀️📦 but the important thing is..my knee is healing great!! And I don’t want to mess it up by doing too much 😬💚 #lymiemomma #lymiemommaofirishtwins #lymedisease #lymediseaseawareness #chroniclyme #lymewarrior #babesia #bartonella #gastroparesis #fibromyalgia #neuropathy #chronicmigraines #degenerativediscdisease #tattooedmomma #tattooedgirls #momsofinstagram #girlswithink #girlswithtattoos #singlemom #husky #huskypuppy #huskiesofinstagram #huskymom #dogmom #surgery #recovery
Zaeden and Aria ❤️ . I found a Spider-Man costume for Zaeden last night for only $7.50!!...so of course I had to buy it! So now my kids are actin like it’s Halloween already..🤷🏻‍♀️😆🎃 . #lymiemomma #lymiemommaofirishtwins #lymedisease #lymediseaseawareness #chroniclyme #lymewarrior #babesia #bartonella #gastroparesis #fibromyalgia #neuropathy #chronicmigraines #degenerativediscdisease #tattooedmomma #tattooedgirls #momsofinstagram #girlswithink #girlswithtattoos #singlemom #mommasgirl #mommasboy #spiderman #foreversandevers
Pain keeping me awake. I do not miss this life. I miss being in remission. I literally forgot how to be a “sick” girl. I have a feeling #gastroparesis will remind me again.
Ugh mouth wash... THE ENEMY..well it really helps but it’s THE WORST. What’s one of y’alls worst flare up extra side effects?!! Mine has to be the never ending canker sores in my mouth due to the extra stomach acid from vomiting and my GERD. Only thing I can find to help with them are mouthwashes that make me want to cry... any tips to prevent canker sores in the future...?!!!? Please help me.. #flareups #mychroniclife #cankersores #gastroparesis #chronicfatigue #chronicnausea #chronicpain #numb #mouthwash #helpme #needtips #advice #sideeffects
Anyone who has had issues with their gallbladder - did it ever cause you symptoms besides the typical digestive related symptoms and pain? Such as headaches, drowsiness, dizziness, fatigue, etc? #spoonie #chronicallyill #chronicillness #invisibleillness #gastroparesis #irritablebowelsyndrome #dysautonomia #posturalorthostatictachycardiasyndrome
Today was tough, but that doesn't mean tomorrow will be--- that's the best thing about "tomorrow"s, they have potential. I'll try again tomorrow, and until then I have my cat snuggled up with me to keep me company . . . . . . . . . . . #cat #cats_of_instagram #encouragement #RareDiseaseWarrior #ChronicIllness #ChronicIllnesses #ChronicallyIll #ChronicPain #Spoonie #EhlersDanlosSyndrome #EDS #Hypermobility #Gastroparesis #PosturalOrthostaticTachycardiaSyndrome #POTS #CeliacDisease #Celiac #Glutenfree #Fibromyalgia #Fibro #PeriodicLimbMovementDisorder #IC #InterstitialCystitis
I asked one of my lovely customers @georgiesjourney , to share a little of her story in the hope that it will help educate and spread understanding around Ehlers Danlos Syndrome (EDS) - something I knew nothing about but through Georgie and my other wonderful customers, I'm learning and can honestly say, I have such admiration for what these young women are going through. Georgie's own words follow. Ehlers Danlos Syndrome (EDS) is a rare, genetic, degenerative, and very debilitating connective tissue disorder. EDS is an inherited condition passed on by one parent through genes. So you're born with it but often not diagnosed until adulthood. EDS affects the collagen in your body, and because your body relies on collagen to function properly, patients are left with problems with their skin, blood vessels, joints, bones, and internal organs. All symptoms can vary from being mild to life threatening. No one EDS patient is the same, every individual is affected differently. For me EDS has caused my stomach to fail (Gastroparesis) as well as my intestines (Intestinal Failure). At the age of 18 I had already gone through 3 major bowel surgeries which has left me with a permanent ileostomy. I am TPN (IV nutrition) dependent which I administer through my PICC line for 16hrs a day. TPN is a solution of vitamins, minerals and lipids that is infused into my bloodstream. It completely bypasses my digestive system. This is how I am given the nutrients to function, get stronger, and to survive. EDS has also caused my body to have major heart and lung problems, ongoing bowel obstructions, hypoxic seizures, TIAs (mini strokes), joint dislocations, and severe weakness and pain in the body. Thanks to Tammy's incredible products, it's made my life and so many others so much easier when dealing with feeding tubes and home IVs. Instagram - @georgiesjourney Facebook - https://www.facebook.com/georgiesjourney/ Team Gee T-shirts - http://teamgee.digitees.co.nz/ #tubielove #ehlersdanlossyndrome #gastroparesis #intestinalfailure #tpn #strongwomen #kiakaha
New products coming soon!
Imperfect cry//and scream in ecstasy//So what befalls the flawless?//Look what I've built// it shines so beautifully//Now watch as it destroys me// Y regreso aqui otra vez y comienzo • • • • #afi #afireinside #itookitslife #iwatcheditgrow #iateitslow #nowitconsumesme #livingdeadgirl #gastroparesis #thisisntliving #keepfighting #blonde #leavingsong #parttwo
Recently ive felt this páge and its most recent posts have been pretty dark and just a downer. I dont know if thats just me or its the truth. My experiences and just physical feelings have been bringin me down pretty harsh, to a deep deep point. Its pretty sad, im not writting this to bring down someones day so if you feel bad you can keep scrolling, the last thing i want is someone feeling down. My pain has been building every so often, if i dont have alot of pain i feel weight and like a ache Type of pain that makes me feel weak even if there isnt any flare up. I dont have insurance even though my financial situation requires me to but the government says we supposibly make "alot" of money witch is sad because i live in a very tight place with múltiple people. I need specific foods but whatever. I wanted to see if could get treatment for my IBS but no insurance, and idk if i may have crohns disease because the last time i had insurance they had told me my illeum is inflammed but they dont have enough evidence but they "diagnosed" me with "Chronic IBS". Besides that ive just been living everyday as if nothing, just keepin on with everything. My emotions mentally have been folding, ive been in depression since about 2015, who would have thought the situations ive been through would have happened at a ridiculously young age. I love you all that follow me, I try to post every so often, sometimes i just get lost in my thoughts n etc and forget.... ●●●●●●●●●●●●●●●●●●●●●● Depression is another part that IBS will try to drive you in, I guess I'm in that trap. ●●●●●●●●●●●●●●●●●●●●●●● Start using 👉#NoCureGang 👈for 👉#IBS 👈and any other autoimmune inflammatory diseases/syndromes, invisible non curable illnesses💙💜💚💛 🌐LetsUnite🌐 ....... ......... 👀INVISIBLE ILLNESSES👀 #GIAwareness #spoonielife #gastritis #gastroparesis #IBSawareness ............👏🏾POSITIVITY👏🏾 .......................... (IBS💙) (GASTRITIS🔥) .... #gastritis #autoimmune #acidreflux #swollenstomach #spoonie #anxietylife #GIDisorders #stomachproblems #spoonie #crohnsdisease #ulcers #stomachdisease #LivingWithIBS #shoutusout #livelife #positivity #medicalmarijuana #gastrointestinaldiseases #li
A little celebratory hair cut & color now that I’m out of the hospital! So I’m still feeling pretty sick my white count is still on the rise. I also got pretty sick tonight I couldn’t stop puking. It’s slowed down to once every 45 minutes now but prayers would be appreciated for it to subside. I’m going to mayo in October to get some more testing & possibly a procedure for my liver. Happy to be home even though I’m not feeling well. #chronicillness #hospital #minnesota #liverdisease #kidneytransplant #instahealth #spoonie #gastroparesis #sick #spooniestrong #healthissues #kidneydisease #arpkdchf #raredisease
My specialist lives 4 hours out of town, we have recently discovered ridesource and can have a taxi take us for free! It's been so amazing since both my mom and I are always so fatigued and exhausted, we always have to nap after our appointment before driving home. It has been such a blessing to have someone else drive us! My favorite part about this far trip is this waterfall, it's less than a two-minute walk from the parking lot so we can always get to it even when we're hurting!!! It. Was. SO. Beautiful today. Took my breath away like always 💫💜 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #heds #hypermobility #stretchyjoints #swelling #inflammation #collagendefect #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue #zebrastrong #edssurvivor #hydrationhelps !
“When it rains, looks for rainbows; when it’s dark, look for stars ✨” . . . I’ve just been chilling in bed as much as possible, recovering from my concussion. I had to go back to the ER because my doctor was concerned with my headaches spreading and the potential for a slow bleed, but my scans were all clear- yay! So it’s just letting things heal for now. Tomorrow I’ve got an MRI for my knee that I injured during the move because it’s not healing well. There’s not much to do for it, but we just gotta make sure we know what’s going on. And then I see an orthopedist that specializes in feet/ankles. I’ve been having lots of ankle issues, so we’re gonna see if there’s anything to be done for my pain- it’s like my ankles are constantly sprained right now. But chances are there won’t be any options with my EDS. But we can always try! And if not, I’ll find a way to keep going. 😊 . . . #sooonielife #spooniestrong #ehlersdanlossyndrome #mastcellactivationsyndrome #mcas #fibromyalgia #gastroparesis #photography #astronomyphotography #bloodmoon
Sick as shit. Hotels aren’t nearly as fun when I can’t explore them. For now, bed rest and kitty cuddles. Hopefully I feel better tomorrow. The hotel staff have been very free with tissues, for which I am immensely grateful. #sick #cold #hell #pain #hotel #bornthisway #invisibleillness #progress #healing #chronicillness #medicine #dysautonomia #gastroparesis #HSD #hypermobile #california #queer #girlswhosmokeweed #weedismedicine #legalize #pot #ganja #ganjagirl #mmj #marijuana #medicalmarijuana #stoner #high #cannabis #cannabiscommunity
Transformation Tuesday: The day I started at my last hospital in Colorado 4/2016 and this hospital 9/2018.
More data from my @ouraring - while I had plenty of sleep, I only had 4 minutes of deep sleep. Uh, that’s not good. I’ll share more info all week that digs deeper into the Oura ring data, including what type of things may be contributing to my lack of deep sleep that restores and repairs. As you can see, sleep quantity and quality matter...
I used to live in the world of “When I can eat again”, until finally one day instead of worrying about when/if I can do this one thing that I needed to learn how to live in this current moment. 🖤 - so many times when I say I can’t eat people have many different reactions one is always “I’m sorry”, “will you ever be able to eat again”, “What can they do to fix it?” Honestly for me there is nothing to fix, if someday there is a cure for Gastroparesis and they discover a way I can eat again of course I would love to jump at the chance but for today this is my life and I want to just accept and love myself in this moment. ✨ . . . . . . . . . . . . . . . . . . . . . . #thegirlwhocanteat #model #modeling #nontoxicbeauty #nontoxicskincare #nontoxicmakeup #greenbeauty #crueltyfreebeauty #crueltyfreemakeup #eds #ehlersdanlos #ibd #crohns #crohnsdisease #gp #gastroparesis #eds #tubie #beautywithatube #changingthefaceofbeauty #differentlyabled #disabled #spoonie
I had my 3 month checkup earlier and this cute little shadow box is my favorite part of my oncologist’s office! I have been a bundle of anxiety over the last week. All manufactures have stopped the production of IV Benadryl nationwide. For a gal dependent on the continuous Benadryl pump, news of the shortage is not just SCARY but downright petrifying. I am sure you can imagine the mental anguish of hearing, “you’ve got x number of days left before we are out of Benadryl,” and knowing there isn’t another way to obtain more. If that stress is not enough, there is also an EpiPen shortage. So, obviously MCAD patients feel defeated with limited accessibility to the main medication that keeps symptoms managed. Now when reactions get out of control and our throats swell shut, there is no EpiPen to stab ourselves with as a recourse either. I recognize this predicament is bigger than me and that I should give it to God. He has always come through before. Yet, it’s easy to forget in the midst of a crisis. I have what I need for the moment and thats what matters.
Physical therapy...even little exercises can be hard when I’m close to my next infusion. I still like to think I crushed it today 💪🏻. My coordination and balance still suck, but it looks like I’m out of the brace zone. Home nursing thought I would need braces to prevent foot drop. While I still do struggle with dragging my feet, if I think about my form I can correct the issue. It’s still tiring to walk because I do have to focus a lot, and my muscles shake, but the point is I put in the work and I get it done. Now to hear my poor lower back and hips. In other news, it would appear I have another kidney stone. It’s not like I need to do anything but try and get it to flush on out. Thanks sponge kidneys, I appreciate your contribution to my crazy life! ♥️ #copingwithbehcets #autonomicneuropathy #behcetsdisease #positivevibes #gastroparesis #medullaryspongekidney #physicaltherapy #work #sickchick #determination
We had a great memorable visit with Grammi and Poppi. They had the trip out here planned a head of time and it played in their favor with the hurricane. Their home is 5 minutes from downtown Wilmington and the Cape Fear river. My parents left here today and flew into Maryland for a few days since they can’t get home yet. They heard that their home is well in tact and so far so good. However, outside of their neighborhood is an island and a lot of mine and my family’s favorite places are not their anymore. To distract my parents from this devastation and fear, we took them all around SoCal! We went to downtown LA, explored San Clemente/ Dana Point, Went to Sea World and had a dolphin interaction, and went to Disneyland! Since my dad and I were feeling good, we embraced every opportunity to explore and have fun. Having my parents here was wonderful and plenty of special memories were made. We can’t wait for more memorable moments like this to come! #nicugrad #nicu #nicubaby #nicugraduate #blessed #blog #miracle #preemie #disney #disneyfamily #socal #brave #nicumommy #GJtube #botox #gtube #jtube #pacemaker #paralyzedintestines #gastricpacemaker #gastroparesis #celiacdisease #pots #potssyndrome #dysautonomia #chronicillness #spoonie #warrior #journey #miracle #infertility
And there goes a week... 😱 It’s been a tough one all around and there’s been plenty of tears this week! Hoping for a great weekend at @mcmcomiccon with my boys! On another note, I have “phlebitis” in my foot thanks to that IV the other week, it’s like a blood clot or something and my foot is so sore! Has anyone had this before? My Dr said it looks like I had a reaction to the IV?? #movingforward #chronicallyill #family #chronicillness #chronicpain #phlebitis #happy #blessed #butyoudontlooksick #gastroparesis #ehlersdanlossyndrome #eds
One of Nic’s favorite meals lately 👉 Fried Tofu w/ BBQ Sauce. Now there’s a misconception out there that soy is bad for you. I thought this myself for a while until I actually researched it. So GMO soy is probably bad for you, especially if you have an autoimmune condition. I avoid GMOs because they are sprayed with more pesticides, including glyphosate which has shown to destroy the intestines of insects...what’s it doing to your insides? Anyway, soy has also been blamed for causing breast cancer. I know of people who have recovered from breast cancer and will eat chicken + cheese but won’t touch soy. Studies show soy is actually protective and helpful in preventing breast cancer from reoccurring (check out @nutrition_facts_org for more info). Also, animal protein is linked to an increased risk for cancer- and no, not just red meat or processed meat. When I learned this while studying for my B.S. in Nutrition, I was shocked! In that same class we learned that soy is actually beneficial and no, it doesn’t contain estrogen like milk does. It contains phytoestrogens which may counteract a drug used after breast cancer treatment, so talk to your doctor if that is your case. Anyway to make these I used a block of extra firm ORGANIC tofu (that way you know it’s not GMO) and cubed it up. I rolled it in a mixture of 1/2 C spelt flour, 1/4 C nooch, and a few shakes of @traderjoes Everything But The Bagel Seasoning + lightly browned it on a frying pan in some olive oils before baking it in the overnight at 400 F for 20 minutes, flipping halfway through. The results? Crispy, chewy, tasty tofu bites that taste and feel like a cross between mozzarella sticks and chicken nuggets. You’re welcome 😊. . . . . . . . . . . . #runner #healthylifestyle #wifey #vegansofig #plantbasedathlete #arthritis #spoonie #whatveganseat #bbg #tiuteam #veganrecipes #vegangains #morningcoffee #detox #crazyplantlady #autoimmunedisease #autoimmune #gastroparesis #medicalmedium #wholefoods #wholefoodplantbased #tofu #vegandinner #fitspo #fitgirl #fitnessmotivation #mealprep #veganfitness #balancedlife
Goodness. Another round of meds. Sometimes I feel like a fraud. I mean, I advocate for a healthy lifestyle but I openly share allll of my health issues. 🤔 Stick with me... Let’s run down the list. Diabetes, gastroparesis, chronic pain (Fibromyalgia diagnosis), adrenal fatigue, brain tumor, food sensitivities, sibo, candida and other GI issues. Oh and let’s just throw some depression and anxiety in there for fun. I’m sure I’ve left something out. What I deal with on the daily is a lot of work but my life is fucking amazing. How/why? It’s a choice I’ve made and I continue to make that choice everyday. While my healthy lifestyle may not have prevented any of the issues I’ve had/have, I know it’s what’s kept me alive. Let me tell ya...I’ve wanted to give up on a life of sickness more times than I can count. Showing up for myself in small ways has created big positive changes in my health and quality of life. The way that I choose to show up for my body everyday directly affects how my body shows up for me. I choose to take care of my body so my body will be able to spend years taking care of my baby girl! Instead of a death sentence, I treat each issue as a learning experience. I learn not only about what works and what doesn’t, I learn a little more about perseverance and strength with each struggle. I don’t claim to have all the answers but I have learned a lot in my struggles. Maybe, just maybe I’ve helped somebody along the way. So I’m going to happily finish this bottle of pills along with the supplements and special diet. I’m going to have faith that it will rid my body of this candida overgrowth and restore the good bacteria in my gut. I will continue to fight, continue to learn and continue to share! ❤️ . . . . . #diabetestype1 #diabetestype2 #diabetic #gastroparesis #braintumor #sibo #candida #fibromyalgia #adrenalfatigue #chronicfatigue #veganish #girlmomma #girlmomlife #dogmomma #boxermom #boxermomma #boxermum #dogmum #girlmum #highvibes #manifesting #strongmomma #toughmomma #strongmum #momgoals #mumgoals #holistichealing #holisticliving
Some days make up works to make me feel better, weird I know but it’s like look better, feel better 😎 today wasn’t one of those days. The make up literally hurt my face this morning. I’ve eaten an ounce of chocolate, 1/2 a piece of banana bread and I can’t bare to eat anything else. My skin hurts. Bronchitis and an ear infection for the 4th time this year. Yet I sit here thankful. Because while yes, I am sick and in pain I’ll live through this. With medicine and blood tests, lupus is something I’ll live with probably forever BUT I’ll be living. We have a long way to go in the development for a cure for lupus but considering years ago only 30% of people who were diagnosed with lupus were expected to live, I’ll say I’m pretty happy with how far we’ve come in the last 10 years. I’m hopeful to see how far we will go in another 10 years.
I snapped a quick photo of myself right after getting back to pre-op. Joe was still out in the waiting room. I had been made to go over all the list of illnesses I have and all the medications I take with the nurse. It only took twice to get a vein for an IV. 🙌🏻 The nurse tried once and then asked the anesthesiologist to do it. I was there for a port after all. I had a few minutes alone. So I prayed. A peace came over me. I wasn’t as nervous anymore. I did have to go under general anesthesia and have a breathing tube because I’d awakened at 3:00 am nauseous (my norm) and the anesthesiologist wanted to ensure I had an airway. I also had some minor breathing issues coming out of anesthesia but nothing serious. It went well. I do have another nasty scar to add to my collection and the port bump is a little strange for me right now from the side view. BUT I’m okay with it. No more 45 minutes of veins blowing out and multiple sticks. I can start my weekly IVs back up. This is a positive thing. I had a compassionate surgeon and care team. I am thankful. We’re back home now, and I’m resting. 😊 #ports #ivport #ivinfusion #dysautonomia #spoonie #gastroparesis #chronicillness
Holy moly. Being sick myself is hard. Watching my kiddo starting down that road is harder. Both together feel like an impossible mountain to climb #gastroparesis #gastroparesisawareness #gpawareness #chronicillness #livingthechroniclife #dontgiveup #poorbaby #wecandoit #mom #momlife #climbingthemountain
Time to go back to Boston. Here’s to hoping this sweet girl doesn’t vomit the whole flight! Poor thing has the worst motion sickness and she threw up her medication on the way here 🤦🏽‍♀️ Those eyebrows though...😂 . . . . #Ehlersdanlossyndrome #eds #heds #chronicillness #chronicpain #chronichappiness #genetics #dowhatyouthinkyoucantdo #invisibleillness #hypermobility #dysautonomia #pots #dislocations #gastroparesis #edsawareness #thehappynow #disability #disabled #fragilebutunbreakable #california #hearingloss #hoh #deaf #asl #hearingaids #widex #chihuahua
Y'all. I made some BOMB soup with my new crock pot!! It can be so frustrating when our diet is so limited, my friend just gave me this crock pot so I chopped up all the foods I can eat and threw them in there!!! #potatoes #carrots #broccoli #onion #garlic #saltandpepper #chickenbroth 😍😍😍😍😍😍😍 I think I'm going to be eating soup ALL. WINTER. 😍😁🤘🤘 . . . #mastcellactivationdisorder #mastcellactivationsyndrome   #mcad #mcas #ehlersdanlossyndrome #eds #heds #hypermobility #stretchyjoints #swelling #inflammation #collagendefect #gastroparesis #tachycardia #posturalorthostatictachycardiasyndrome #pots #syncope #pain #chronicpain #chronicfatigue #zebrastrong #edssurvivor #hydrationhelps !
Port is out, PICC is in & I am home! ✌🏼💛 // *New Blog Post! [exerpt👇🏼] Link in bio. // This past week I underwent some medical pruning. My infection was clinging so tightly that we had to remove the bad parts and refresh. This was not the most ideal process. It required a mini surgery, hospital stay, and extra medication. But because of that not-so-ideal process, my health will be better off. I will have the opportunity to grow stronger. // Similarly, God wants to clear our lives of all the things that are not helpful. Maybe they are overtly bad things, sins that cling tightly. Or perhaps they are things that seem good, and okay, but they are not helping us cling to what is ultimate. They are distracting us from knowing Christ, and taking up precious fruit bearing real estate. This pruning will likely hurt. Suffering is always the byproduct of conquering sin. But it is always worth it. It has purpose. // At the end of Jesus’s charge, he says, “These things I have spoken to you, that my joy may be in you, and that your joy may be full.” (v. 11)  In the original Greek, the word that translates to “full” means: to fill to capacity, to complete, to accomplish. It is used literally to describe a net that is crammed full to capacity. // God doesn’t want us to be moderately joyful people. He wants our hearts to be wildly full. Just as in John 21:6, Jesus directed the disciples to cast their net on the other side of the boat. Once they did, they could not even haul in their net as it was so full of fish. We will require pruning, and we may need to exert time and effort to reign in our nets and cast them in the right direction. But he knows exactly where to cast our lives to absolutely cram our nets full with joy.
Today was simply amazing. First time since November, 2017 that Zach and I have gone out together, dressed up, and just enjoyed each other’s company without worrying about a million upcoming appointments or my health in general. It was finally on the back burner for once. I just feel fucking awesome, like the Julie I once was. I knew she was still in there somewhere, just had to fight like hell to find her. To make it even better we got to watch @rachelleahm marry the man of her dreams at one of the most beautiful weddings I’ve ever seen on the most beautiful farm. I couldn’t have picked a better first night back out in the real world. Life is good 💜🌻 @ciniman_waffle #chronicpancreatitis #gastroparesis #chronicillness
There she is 🙌🏼🌻💜 Not as scary or painful as it seems. Out of every tube I’ve had so far this is by FAR my easiest one. I can feed all day at a 75ml per hour rate and not feel a thing, where with my old G tube I couldn’t get over 10ml per hour without ripping it off once every hour due to unbearable pain. Modern medicine is crazy🖤 #feedingtubeawareness #gjtube #chronicpancreatitis #gastroparesis #chronicdisease #chronicillness #pancreatitis #warrior #zachsalwayseatingmaplesalwayssleeping
Day 3 post OP; woke up feeling SO much better today...had my first dressing change and I was finally able to get up and move again. Plan as of now is I’ll be back recovering from home tomorrow 💟🙏🏻 #gjtube #chronicpancreatitis #gastroparesis #chronicillness #chronicdisease #warrioe
Got up and walked about 500ft this morning...honesty one of the hardest things I’ve ever done 😳😫😝 One step at a time yo. . . . PS how gross is this drain 🤢 you’re welcome for showing you. #chronicillness #chronicpancreatitis #gastroparesis #warrior
Tonight’s a good fucking night. It’s the last night I have to sleep with my feeding tube connected through my face. These past few months have been so hard on my self esteem. No matter how tough or happy I may seem, I have barely left my house due to the way people make me feel. The stares, comments, rude remarks (I.e. asking me if I’m anorexic and that’s why I need a feeding tube) and overall feeling that people never looked at me anymore, they looked at my tube. I felt like I lost who I was hiding behind this disability. I’m terrified to go under surgery tomorrow with Zach across the country but I know I’m more than strong enough to do it alone. Ill be getting my final permanent feeding tube placed through my small intestine and will be able to slowly get back to a normal life once the post op healing is done. I’m ready to win💟👊🏼✨ #chronicpancreatitisfighter #chronicpancreatitis #chronicillness #gastroparesis #warrior
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