Today is my 1 year stomaversary.
It's been a year since the surgery that started to put me back together after the biggest tragedy of my life. After this surgery I no longer needed a wound manager that was almost the size of my abdomen, I no longer needed long term drains, I no longer had fistulas ridding my body, I no longer needed TPN (IV nutrition), and I had a functioning permanent ileostomy.
In the last year I've gotten more comfortable with my body as it is now, ileostomy and all. I still hate it sometimes, but it's better than being dead. I'm an extremely determined, stubborn, and hardheaded woman. I'm convinced it's why I didn't die, to the immense surprise of my surgeon and medical team, after I had Josie two years ago. But I'm also alive because my Ileostomy allows me to get the proper nutrition I need. I now live with chronic pain and may never walk normally again, but in the past few weeks I have picked up my daughter for the first time ever and took my first steps without a walker. I've been able to go out and do things with my husband, daughter, and the rest of my family more often, too. I keep making far more progress than my doctors and therapists ever expect. Even though life is far from where I ever imagined it would be right now, I'm still very determined to continue to prove my doctors wrong. I hope that by my second stomaversary, I'll be walking unassisted.
#disability#disabledmom#sto#stomaary #stoma #fistula#ileostomy#ileostomybag#ileostomylife#ostomy#ostomybag#anniversary#chronicpain#ostomyawareness#chronicpainwarrior
This is a pretty typical walk for me at 21 months post spinal fusion. I don't usually measure my distance - I just walk until I get bored or start feeling sunburned or run out of time. And I'm suuuuper slow, but that's mostly because I'm looking for treasures and doing lots & lots of squats (to pick up what I find). 🐚 I try to do this at least 3 times a week. Sometimes I walk faster or experiment with different inclines, but I always come back to my long, slow walks. They bring me the most joy & mental quiet.
Ultrasound went fine.
I enjoyed my coffee @wishbone.nz are so reliable for a good flat white. And I love that I’ve come far enough in #edrecovery to HAVE a flat white not the americano with soy I always used to order. That frothy espresso is SOOO much better! 😋
Had to different scans done ✅ I won’t get the results for a few days and the technician gave nothing away, nor did the doctor who observed the second one (idk why??) and I don’t know what that screen was saying 😂
I see my GP on Monday (He’s finally back! Haven’t seen him in a month and what a hell of a month it has been 😑) and will get some further updates on results, my referrals, and to be able to catch him up on the further symptoms I’ve been having since my vaguely diagnosed infection that last landed me in the ward.
@flaredown has been a godsend in the last month and I’m so glad it’s only 2 days now till I can talk to someone irl other than mum about the challenges with my lack of physical health.
I feel like I’m always posting about it #sorryguys but at the same time there’s SOoo much of it that doesn’t go on here. I try to moderate it and also keep away from tmi. No one needs that lol 🙃
So hoping for some progress on the spoonie front in the next few days 🤞🏻🤞🏻
This resonates with me on so many levels, for so many reasons. You can be completely surrounded by people, their love and support, yet still feel utterly alone. This journey in life is our own... to understand, to evolve through, to hold ourselves accountable for and to grow with a purpose of higher good. We have our tribes of friends and family, some larger or smaller than others and quality counts here, over quantity, always. However; we all live lives no one else can truly ever understand, and it isn’t their responsibility to do so. Nor is it ours to fully understand the journey of others. We are here to love, support, to help each other overcome and achieve beautiful things, yes... but it is still a lonely road to travel, especially when ascension and transformation take place 🦋. Remember, the sun is alone too... but it STILL shines 💛☀️🌟 #chronicpainwarrior#chronicillnesswarrior#wegotthis#lonelyroad#sunstillshines#highergood#evolve#createoneselfendlessly#remember
Host Profile #4@zanacurios // @ely_lunerouge ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Elysha is a tough cookie, living creatively through her art with Etsy. A badass warrior who wants other women to arm themselves.
Expert knowledge is limited with many of our conditions but by educating ourselves we become our own experts.
So Elysha, what’s it like living with a hidden condition?
“There are so many obstacles you have to face, it affects everything; physically, emotionally, mentally, relationships and careers. Even though I have a great support system, it feels like a lonely battle.”
“It seems quite common that with Endometriosis, we can have other conditions, at the age of 7, I had widespread Vitiligo (an auto-immune condition which causes depigmentation of your skin colour) and after my Endo surgery, I was diagnosed with Interstitial Cystitis.”
“I think it takes one person to speak up and the others will follow, and when us warriors put our voices together, we will be indestructible!” ⠀⠀⠀⠀⠀⠀⠀⠀⠀
You took the words right out of my mouth Elysha.
You’re awesome no matter what you’ve been led to believe, by whoever has led you to that opinion! Remember we are all unique, we’re all flawed but we’re all our own person which makes us the coooooolest 💁🏼♀️
Happy Friday Jr!