#invisibleillnessawarenessweek “you don’t look sick” “your functioning fine” “it’s all in your head”. Most people see the side of me where I have my hair done, some makeup on, and out and about and doing normal things. Friends I don’t know well wouldn’t even guess I had a chronic illness, but turn my body inside out and it tells a different story. Follow me home and see me almost immediately get in to comfy clothes and fall on the couch. See me take a nausea pill and then low dose chemo, see me give myself my weekly shot, see me living in the bathroom for hours or have the heating pad out almost 24-7. See me struggle finding a safe food to eat that won’t give me intense pain and leave me puking and living in the bathroom and in bed for the next day. You don’t see the doctor appointments, hospital admissions, infusions, tests and procedures and surgeries. Instead you see the happy smiling girl riding her horse and hanging out with friends, the girl I want you to see. •
Even though right now I’m in “medical remission” I know it probably won’t last for to long. I’m loving having this feeling of some normalcy in my life again after a year of a very hard road. Even though my feeling great and almost normal is probably someone’s feeling so terrible lol. Most people probably believe I’m “cured” In fact I know a few people who think everything is fixed and when I tell them ill never be “fixed” they get this very confused look. Please don’t ever judge a book by its cover. you never know what kind of battle someone is going though. #invisibleillness
Wasn't going to post this but fuck it! I've been crying here, in fact this was taken 5mins prior to posting this!
So I'm not very well again...I've lost 1stone 8lbs in the past 3weeks!!! My Crohn's Disease has flared up really badly, I'm not absorbing enough nutrients, losing blood and where I'm solely breastfeeding, thats taking what nutrients I do have, to feed Grayson! I have to start on injectable immunosuppressants, unfortunately I don't think I'm allowed to breastfeed on them which has broken my heart!!! I know not everyone can breastfeed or choose not to, but where my body fails me so much, I was SO happy and proud of myself for being able to breastfeed and to be doing a good job of it too!
I want the option whether I want to stop, not to be told I can't.
I wont start the meds for another few weeks so until then I'm going to lap up every second with Grayson & our short breastfeeding story!
I just feel a bit let down by my own body and sad I might have to stop something I'm good at and enjoy so much! 😪
I guess not everything goes to plan and I should remember that I need to get myself better otherwise I wont be well enough to look after Grayson which at the end of the day is the most important thing!
Today I spent the morning having another short synacthen test. Obviously the first issue was that they couldn’t cannulate me, no surprise there! Finally they did and then I had to have a injection which stung so bad, I nearly collapsed. Oh welll all done, hoping for some better results this time and then hopefully I can stop steroids 🤞🏼🤞🏼🤞🏼🤞🏼
#alwayssmiling is my motto. Why? Because it makes life better. You get back what you put out. The very act of #smiling stimulates positivity in yourself and others. Obviously I am not grinning like the Cheshire Cat 24/7 but it's a mindset. My other motto is #nevergiveup which speaks for itself. But hmmm this #humpday was pretty damned mountainous, with lava on top (in the form of an inflamed colon). 🌋 Oh it was a struggle but I got there in the end... to the smile that is. I made my student & clients laugh and I rounded out the sunshine hours with a walk with The Husb & the pooch. 💪😁🐶 #exerciseismedicine#striving#spoonielife#goals#ibd#gutsy
That old Australian Tourism advertisement starring Lara Bingle springs to mind: "Where the bloody hell are you?" For whatever reason, no-one has presented at the exercise clinic this morning. I am turning over my legs on the recumbent bike having checked emails and completed what admin I can on my phone. My gut is very sore and upset this morning; it is a struggle to stay upbeat on days like this, so if my clients are feeling anything like me, I can empathise! ⛅👓🚲 #spoonielife#tryingtosmile#nevergiveup#ibd#gutsy#exerciseismedicine
A dream of performing on Broadway moved me to NYC 15 years ago to study Experimental Theatre at NYU. The diagnosis of Ulcerative Colitis shortly thereafter shifted my focus to a "behind the scenes" career in media entertainment with reliable health insurance. The toll of the disease on my postpartum body transitioned me into the health and wellness space. My love of musical theatre has never dwindled; what a pleasure to watch Broadway stars perform in memory of fellow patient and actor Nancy LaMott at the Crohn's and Colitis Foundation's Broadway's Got Guts. #yogimom#yogaeverydamnday#ulcerativecolitis#entyviowarrior#ccfa#ibdawareness#newyorkcityliving
Intention of the week:
Slow breaths in and even slower breaths out. The nurses always comment on how low my heart rate is when they're hooking up my IV and taking my vitals before a procedure. I've learned that stressing out and getting anxious before a heavy week of procedures or testing doesn't help. I always try to be the calm in my own storm and it helps a lot.
I sat on my mat yesterday flowing slowly and breathing deeply as I asked for my practice to reveal the intentions and mantras I would need most heading into this hectic week of procedures and testing and here's what came to me:
I am stronger than I think.
I believe I will get better.
Even when life is moving at a rapid pace, stop to take some deep breaths and smell the flowers. It'll only help 💕
This Wednesday on the blog I'll be sharing some of my tips and tricks to get you through tricky medical appointments and tests like long MRI's and uncomfortable procedures.
I know I'll be taking deep breaths all week, where will you find the time to slow down in the chaos and just breathe?
I have ridden the 3 Dams Cycling Challenge SIX times and am in the BWA Hall of Fame for my efforts. I struggle with a chronic medical condition so I am pretty proud of my achievement. This year, I have decided to take on a new challenge. I have never completed a trail running event before but just signed up for the five-race Perth Summer Series (gulp!) I am in the middle of a nasty ulcerative colitis flare and some might say I am silly committing to something new and difficult in the middle of a health crisis. Maybe I am. My husband rolled his eyes. But I need goals, I need to strive, I need to get out there and challenge myself, feel normal. I will not succumb to being an invalid. I will be sensible in my training management - my rival is this disease, not other healthy competitors. 🌄🏃✔ #nevergiveup#alwayssmiling#exerciseismedicine#trailrunning#perthsummertrailseries
Life can be tough especially when making big decisions. My blog this week talks about the massive decision I have made and what happened when I was being sick with my Stoma. 😷 Read it here: https://semicolon563.wordpress.com/blog/ 💩😊
Hello guys 💜 you know how one day you can cope with the pain, and then next day, crash?!?! That’s what happened this weekend and here I am in a bed at my favourite hospital😉😰 why? I have these fistulas, and the last three weeks they have been going crazy. Which has resulted in at least four massive wounds in my lady parts and behind😱😱😱😱 now doctors will have a look at them and most likely do a bit more cutting down there😔😔😔 also I’m not drinking as I should because peeing hurts so, so much and doctors hate when I’m not getting my fluids. My blood pressure is way too low 👎👎👎👎 by tomorrow I should know much more💜💜💜 #ostomy#ileostomy#crohns#morbuscrohn#stoma#ibd#ibdawareness#morning#ibdvisible#painisreal#hospital#monday#spoonie#crohnwarrior#crohnie#crohnslife
NEW BLOG POST: "If you’ve battled inflammatory bowel disease for any amount of time you have a story. Your story has the power to lift up others and show them they are not alone. It’s so easy to isolate ourselves and pretend that we’re feeling fantastic, when in all actuality our insides are inflamed and constantly leaving us in pain. As I looked out in the crowd, wearing a dress, standing tall with my hair curled—looking like a completely healthy person. I said—little would you know looking at me, that this morning at 2 a.m. I was stuck in the bathroom in excruciating pain, on the brink of throwing up. Those are the moments nobody sees, that we need to talk about." Link to the full article in my profile.☝🏻
So I didn't get a chance to post this on Friday, but Friday was my year anniversary of taking Humira for my ulcerative colitis. A year ago I took my first four starter injections into my stomach in a square pattern around my belly button. My ulcerative colitis was so severe that my GI doctor skipped all of the other medication options and went straight to biologic therapy. I was fearful that my body would fail the medication, one of the strongest options out there for my disease, and that I would have to either drive to an infusion center for medication to be put in me via an IV or worse- that I would lose my large intestine. At first it seemed like I was failing it, until February when my doctor upped my dosage to weekly injections from the biweekly injections I was originally on. By June I felt better than I had in a year, and today (most days) I can't even tell that I'm considered a "chronically ill" person. I'm very grateful for this medication, though the side effects and risks can be horrifying and I'll be on it for the rest of my life (or until my body rejects it), this medication has given me my new "normal" life. 🙌🏻💜💪🏻💉
Guest Post⏰: in honor of Pregnancy & Infant Loss Awareness Day my friend Jess has shared her story about pregnancy, loss, and the possible correlation with undiagnosed thyroid issues. Head to the blog to read her whole story! #linkinbio
#tbt to the day before my Stoma when I was probably the most nervous I have ever been. I had no idea how much it would change my life or how I’d adapt. Writing a blog has helped me express some feelings about it but also use my experience to help others. Please follow my new twitter account for my blog and all things IBD! @semicolon563 ❤️💩