She tell me that I get her high ‘cause a angel’s supposed to fly I ain’t ask her why no more 🎶 🌬 #chronicpain #chronicillness #mentalhealthsupport #lifetakesguts #zebrastrong #medicated #smokeseshforone #deepsongswithdeepthoughts #2009 #macmiller #rip

EXHAUSTION - someone please give me some tips on battling extreme fatigue!!! 2 weeks back at work and I can bloody feel it. 23 years old and I feel 93. I get I have a more physical job but I love it and I don’t see why on top of everything else I should give up on it. I always wanted to be a teacher but the reality is I just can’t physically do it, I struggle as it is. If it’s not my chronic fatigue its my arthritis and as much as Ustikinamab has let me go a month and a half without getting my knees drained and injected, 2 weeks back at work and they’re already filling with fluid. We aren’t even in winter yet and the thought fills me with dread. Dark mornings with stiff, swollen joints and dark nights where I can barely lift up the kettle, let alone cook dinner after work. 3 weeks ago I went for my PIP assessment (personal independence payment) at 23 to have to sit in a room and openly admit you just can’t cope. To admit to a complete stranger that there’s days I struggle to wash myself because of pain and exhaustion, that making a cup of tea feels like lifting a ton of bricks, that sometimes I literally can’t get out of bed because my joints won’t let me. That changing my stoma bag gets pushed further and further back because I don’t have the energy to lift my head up right. That speaking or spending time with family or friends feels like a task because I can’t physically think or I literally don’t want to be seen by anyone. I sat and I cried to a complete stranger about the daily struggles of my life at 23 when I sit and watch my friends do everything I want to do and so easily. I applied for PIP so I could have extra money meaning I could find a job that would allow me to go part time in the hope that it would help my health, allow me to continue doing a job I love, and to prevent me from every December becoming that poorly that I end up seriously in in hospital. Going part time wouldn’t promise me my health but it would allow me to sleep all day, to rest my body and attend hospital appointments that I choose not to go to because I hate letting work down. Through every ache, through every pain, through dragging my body and my mind (continued in comments)...

Roasting all my #farmfresh carrots for a carrot ginger soup. So good for the belly! I’ll be putting in some coconut cream and dill and it will be the best thing ever. Fall is officially starting🍁🥕🥣 #foodprepSunday

These past few weeks have been so rough. When I look in the mirror, I don’t recognize myself in any way. I expect to see Julianna from about 120 pounds ago, and when I see the stranger staring back at me, it’s startling. Lately, I feel like I put my life on pause, and someone just finally hit play after all these years. This too shall pass, but this is definitely a part of the process that gets overshadowed by the joy and exuberance associated with getting to your goal weight.
#lifetakesguts #whatdoesntkillyoumakesyoustronger #weightlosstransformation #weightlossjourney #vsg #vsgjourney #vsgcommunity #vsgcommunitysupport #vsgsurgery #vsgsupport #vsgfamily #vsgproblems #vsgstrong

WHAT. 6 months ago TODAY I had my colon removed. I really can’t believe it’s been 6 months already. The last 6 months have been a whirlwind of emotions, medical complications, losing and gaining weight, eating all the food I couldn’t before, going out and actually enjoying myself, and really finding out who I am and who I want to be. I’ve taken more risks in the last 6 months than I have in the last 6 years. I’ve discovered passions I didn’t know I had. I’ve realized there are things I want to do that I didn’t know being sick held me back from. Really what it comes down to is LIFE IS FUCKING AWESOME. And so is food. And not being sick. And doing whatever I want because I am in charge of my life again. So do that thing you always wanted to. Talk to that person. Tell them how you feel. Take that trip. Get that tattoo. Buy that outfit you feel hot as shit in. Have great sex. Drink beer. Eat until you burst. This is all we have, right here and right now. We get one beautiful, crazy, adventurous, gut wrenching, heart melting life. DO IT RIGHT 👊🏻😘🤷🏼‍♀️🙈👑👸🏼🍦💩
#justfuckingdoit #lifeisbetterwhenitsyours #takethatrisk #itwillbeworthit #fuckit #myscarsarebeautiful #lifeaftersurgery #notsickanymoremotherfucker #nocolonstillrollin #whoneedsacolonanyway #lifeisbeautiful #imahotmess #butiloveit #gutsoverfear #teamgutsoverfear #lifetakesguts #bemyfriendletsdoshit

The vascular surgeon (who happens to be the brother of my main pancreatic surgeon -they’re great) opted to do a femoral line as I have too much scar tissue in my arms from previous lines to put new ones in. So, my leg will look like this for the next 6-8 weeks. One tube is where I get my food - called TPN - and that “food in a bag” is on 24/7 so I’m constantly getting nutrition as mine is so crazy low right now. The second tube is for blood draws and IV injections, though only blood draws at the moment since I’m back home and not on morphine anymore.
The third line is on my side (see previous post) which is my wound vac to help drain the fluid out of my abdomen. This line also runs 24/7. Tubes galore.

#babeswithbags #ostomylife #halfacolonstillrollin #lifetakesguts #ostomate #tpn #spoonie

I saw a new Gastropresis Specialist on Tuesday at Stanford and I walked into that appointment with zero expectations after being let down by the specialist at CPMC. But, I ended up being pleasantly surprised with how much we covered at this appointment and I was impressed with how knowledgeable she ended up being. We are testing for a few connective tissue disorders, doing a few more experimental procedures, and playing with other medications That will all hopefully manage my symptoms while we try to figure out all my diagnosis’. What most likely will be the end goal to manage my gastropresis will be getting another picc line placed to start what’s called TPN (total parenteral nutrition) and do a complete stomach rest where I would not be physically eating food but still be getting the nutrients I need so I hopefully reset my Gi tract and that would take about 8 weeks instead of getting a feeding tube! (The j tube) We are also looking into what’s basically a pace maker for the stomach because I was originally told the gastric pace makers don’t have a high success rate for patients like me, to only find out that isn’t true and it’s more likely to work for cases like me than these new meds I’m about to try so that was interesting. I have been struggling a lot with being forced to start completely over for the 5th time but after switching specialist and my primary physician it’s the first time I have walked out of appointments without tears running down my face (which honestly feels weird how sad is that?) and knowing I have a plan of care in place with people who care enough to see this through until the end no matter what it takes #healthupdates #gastroparesis #chronicillness #chronicpain #myjourney #diagnosisprocess #stanfordmedical #lifetakesguts #patientcare #advocateforyourself #youdeserveanswers

Well, arrived here last night at 9:45pm after a 2 hour drive. Then waited in the ER waiting room for 2-1/2 hours while repeatedly throwing up before they finally ran some labs/cultures/urine culture/x-ray's. They finally took me back.
It is 12:45pm the next day. I am admitted but still in the ER. Still waiting for a bed in the hospital. Last night, they had 44 people ahead of me waiting for beds and it was chaos. They moved me to a bigger ER room so they can fit a normal chair in here and if need be (a regular hospital bed).
Have to wait a day or two for cultures to come back on the picc line, blood from another site, and urine. X-ray came back normal. So they are holding off on TPN. They started on Fluids, and had two IV antibiotics as well as a slue of other meds.
They have me on clear liquids. I just threw up twice and had direahea from the antibiotics and the Tramadol and Tylenol they gave me together on an empty stomach. Feeling a little bit better now.
I will update when I know more. I just wish I could sleep for a bit. This is rough. Stay strong my fellow Spoonies and Warriors!
#gastroparesis #gastroparesiswarrior #lifetakesguts #tpn #tpndependent #piccline #tubefeeding #malnutrition #autoimmunedisease #nocure #lupus #SLE #lupusawareness #lupuswarrior #fibromyalgia #neuropathy #osteoperosis #dysautonomia #reynauds #mediport #bladderpacemaker #onedayatatime #er #emergencyroom #hospital #bethechangeyouwanttoseeintheworld

Always so tempted to buy wigs again! I see so many girls wearing them and looking incredible and I love the idea of being able to change my hair drastically everyday! When I got these ones I was so self conscious about wearing them because I felt that it was obvious I was wearing wigs and hiding that I had no hair but now I have my hair back, not as long but long enough, I don't feel conscious of that anymore because I'd be wearing them for me and not to hide something I was going through and struggling with.
To order more or not to order more...? Hmm...? 🤔

To achieve Something In Life We have To Sacrifice something or the other. Its Life!! Read It And Comment Below
##lifeisatest ##lifetakesguts

(Next photo is graphic, so don’t scroll if you’re squeamish) Everyone, meet my wound vac. My surgeon has opted to remove the fistula drain bag and replace it with this appliance that continuously suctions fluid out of my abdomen. Super sexy, huh? I’m still swollen some, but my skin is far less irritated and not as painful. Unfortunately, having this means I can’t eat or drink anything for the next 6-8 weeks, so all I do is think about food all day. Pls schedule pizza deliveries for the end of October. #ostomate #babeswithbags #halfacolonstillrollin #semicolon #lifetakesguts #ostomylife


Today is about me and self care. I challenge you to set a day or hour or ten mins to focus on YOU! Do things that make you happy and shut off the excess “noise”. I have gone to 1 of my 2 spin classes so far which always puts me in a great headspace.
I’m also going to enjoy an AMAZING pamper night in the comfort of my own house tonight WITH a glass of wine. No guilt! Just do it!
#TLC #TakeCareofYourself #TakeABreak #HealthyMind #HealthyLiving #HealthyLifestyle #MomLife #SlowDown #LoveYourself #Crohns #CrohnsDisease #CrohnsLife #CrohnsWarrior #CrohnsFighter #CrohnsAwareness #AutoImmuneDisease #AutoImmuneStrong #HealYourGut #ChronicIllness #LifeTakesGuts

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