When packing your apartment to move, you come upon all these reminders of your entire past, all the bits and bobs that tell your story and make you YOU. I stumbled across this gripping piece of writing just now: the Health Care Proxy and Living Will that I had to fill out before having major liver surgery a couple years ago. Because ya know, they didn’t know. The outcome was uncertain. Yeah, I know it’s grim stuff to bring up on Insta but it’s nice to see that in the midst of that shit storm I still had my sense of humor. And...I am amazed, again and again, by what it’s possible to survive. So if you’re having one of those moments where you feel like: ‘Jesus Christ I don’t know if I’m gonna make it’, know that you can. If I can, you probably will. And if not, just make sure they keep you comfortable and PULL THE FUCKING PLUG!!! ❤️🙏🏼❤️
My heart. No longer broken, but the healing leaves scars. They're tough for a time after the wound first heals, and then as time goes on they soften up and start to forget the trauma that was done there. But scars never really go away. It's funny how they can leave you numb in some places and extra sensitive in others. Always there as a reminder of how fragile our bodies are, and how strong they can be.
I pray your scars make your heart strong, but not hard. Sensitive to your needs and the needs of others, but not sore and wounded. Grateful for the grace that is given to you, not bitter for the hand you've been dealt. ❤
2 years ago: 10 days ago my doctor told me I had cancer. "It's aggressive", he said. "We need to do surgery right away, then you will do chemo and radiation, and it has a 50% chance of coming back." He showed me the images, said he was certain. There aren't words to explain what that feels like. I called my mom and sobbed the words out. I told my sister and a few friends until I just couldn't bear to say it again. But the prayers that were said for me. The hundreds of voices that were lifted on my behalf. Many of those people didn't even know me, but they believed what I believed. God could heal me.
3 days ago my doctor called. He had presented my case to the Tumor Board at Mayo Clinic and another physician suggested that maybe this isn't cancer - run one more test. "Don't get your hopes up. The chances are small, but we will take biopsies and confirm what I suspect. Then we will proceed with surgery." 2 days ago I went in for one more test. I laid a hand over my abdomen and asked one last time for my miracle. As I woke up, "There was no mass or tumor. I couldn't find anything suspicious. I took a few biopsies, but the preliminary findings look good!" I cried and told him how many people were praying this would happen.
Yesterday my surgeon called. "I think you've already heard the news, but just to make it official - the biopsies came back negative. I'm calling to tell you your surgery has been cancelled." I could hear the disbelief in his voice, the confusion. The tumor was there before, now it is not.
God healed me! ⬇️
Okay, I’m going to be honest.⠀
This pic is not the exact pumpkin pie pop recipe I’m giving you today.⠀
When I tried my original recipe for the pops (shown above)- I couldn’t even finish it. Joe and I looked at each other with disgust. So, I threw out all the rest. Lol⠀
They were THAT bad! 🤣🤣🤣⠀
I guess I was really trying to keep the sugar down but now I see that these need to be sweeter to be tasty.⠀
So, I switched some things up and improved the recipe. Have these instead of a dessert that might upset your stomach.⠀
⭐️ Note: some people are sensitive to ice cold beverages/foods when in a flare so consider your sensitivity to temperature before trying these out ⭐️⠀
Pumpkin Pie Pops: (the good ones)⠀
• 2 ripe bananas 🍌⠀
• 1/2 cup pumpkin purée⠀
• 2 tablespoons honey 🍯⠀
• 1/8 teaspoon pumpkin pie spice⠀
1. Mash the bananas with the back of a fork in a medium sized bowl.⠀
2. Add all the rest of the ingredients and mix well.⠀
3. Carefully place into popsicle molds and freeze overnight (or 4-6 hours).⠀
4. Remove popsicle from mold and enjoy!
Where have the past 21years gone?! It’s strange, but I can’t imagine what my life would be like if I didn’t IBD.
Over the years I’ve realised that my inspiration for becoming a nurse came from the wonderful care I received on the paediatric ward, my maturity came from being classed as an “adult” at age 12 in the world of health care. My determination came from being so acutely unwell at the age of 19 that I was required to be placed in isolation at Ayr Hospital and being told that “surgery was my only hope”. Becoming a mental health nurse improved my confidence when talking to my care team about my health and reinforced to me that patients can make a change in the way they receive care, regardless of their diagnosis end encouraged me to self manage my conditions. I’m very fortunate in regards to my health as I have been able to have my condition managed with a combination of support, medication and self management and I am honoured to be a champion and an ambassador for Crohns’ and Colitis UK, The Health and Social Care Alliance Scotland and to be in a position where I can offer peer support. It has taken me a long time to be comfortable with my diagnosis of Ulcerative Colitis, but it’s a part of who I am, and I’m going to do whatever the hell I can over the next 20+yrs to fight and win the battle against it.
THIS IS MY STORY. 💜
In 2003 I spent months and months of being underweight and sick with no explanation. Doctors made up various reasons why I was sick, including one saying that it was the "mountain air" causing my extreme symptoms. After many ER trips and tests I was finally diagnosed with Ulcerative Colitis. I started medications called prednisone and pentasa and enrolled in a study on pre/probiotics. This put me into remission for about 5 years.
After 5 years, I became very sick again. In and out of the hospital, my body became dependant on high and prolonged doses of steroids. My diagnosis changed from UC to Crohn's Disease. I was given the choice of starting a new medication or having surgery... I begged my family for surgery because I wanted this shitty disease out of me. They convinced me to try medication first, which put me into remission for another 8 years. During this time I was thriving; playing rugby, basketball, and being a happy, normal kid.
When I started University, things got fishy again. I had built up antibodies to my medication and it was no longer working. Throughout the next 5 years I tried multiple medications (none successful), and was also diagnosed with Primary Sclerosing Cholongitis (PSC) - a rare liver disease sometimes associated with IBD.
Due to multiple risk factors associated with PSC and a disease that was WAY out of control, my doctor and I decided surgery was the best option at this point.
It was a painful and emotionally/physically challenging experience, but my ostomy is already giving me my life back. I'm not even 3 months post-op and have already been rock climbing (just climbed a 10.d! whoop!), done headstands, cross country skied, hiked, and ice climbed. I won't let my diseases determine where/what I do with my life.
As a new nurse, I can't wait to go back to work and share my passion for helping others.
We all go through tough stuff in our lives - let's support and encourage each other, even in our darkest moments. I couldn't have gotten through all of this without the incredible support system that I have!
Thanks for reading this uber long post... lots of love - Sar 💜 #feelingvulnerable
I was diagnosed with Ulcerative Colitis when I was 7 years old, a condition I had never heard of, or even knew existed. I was suffering from constant diarrhoea, stomach cramps and vomiting. There were numerous medications trialled over the years, steroids being a huge one, until I was classed as being in “remission” around the age of 11.
I was able to enjoy most of secondary school until the age of 17, where a bout of shingles,norovirus&exam stress contributed to a flare that pretty much lasted 9years as I was constantly in a cycle of trying new medication, reducing steroids, symptoms increasing so steroids increasing. One medication even caused a severe reaction called neutropenia sepsis&I was also diagnosed with a form of liver disease, Primary Sclerosing Cholangitis.This added diagnosis meant finding the right medication proved tricky as my liver needed to be able to process it on a healthy manner.
I was extremely fortunate that a biological medication, Humira, was the medication I needed. I was able to successfully reduced and end my course of steroids and enter remission.
21 years is a long time. I’ve spent more time living with a chronic illness than I have without&I’m annoyed at myself that it took me a long time to finally “be me” to finally accept that Ulcerative Colitis is a part of who i am. And that’s ok.
I’m turning that annoyance into motivation. I’m motivated to encourage others not to be embarrassed or ashamed by having this condition. I’m motivated to share with others the negative experience I’ve had in order to improve someone else’s experience. I’m motivated to help healthcare professionals understand that patients are humans too. I’m motivated to show others that this condition doesn’t define who you are. That it doesn’t rule your life. That you are the expert in your condition&that you are a bloody superstar for living in each day with this debilitating condition that is still stigmatised far too much.
Alright folks!! the results are in....
My heart is in good condition!!! Yeah me!!! Happy dance 💃🏾💃🏾💃🏾However, the cause of my excruciating pain is #HerpesZoster , yep.. 🤯🤯🤯 but the good news it’s not my heart!! ❤️❤️❤️ ~~•~~•~~•~~•~~•~~•~~•~~•~~
I was feeling defeated this morning,
On the verge of giving up, but didn’t as I’m grateful to say I’m surrounded by loving and caring friends and family members who encouraged me to stay strong especially for the sake of my daughter Aliyah. Praying and listening to Surah Rahman has been giving me strength as well.
So what is Herpes Zoster - per my Emerg Dr. Ryder it is a rash that begins to appear on the left side of your chest and left back shoulder. The first symptoms that appear are common symptoms as if having a heart attack. Chest pains, shortness of breath, fatigue etc (#googleit 😉) and days later a rash will appear. ~~•~~•~~•~~•~~•~~•~~•~~•~~
Did you know:
Herpes Zoster tends to only appear in adults who had chicken pox as a kid. 😬 ~~•~~•~~•~~•~~•~~•~~•~~•~~
Why? You may ask: 🤔
It’s because the chicken pox virus stays in your nervous system and appears in your adulthood, as in my case due to my diagnosed disease #primarysclerosingcholangitis , weak immune system and stress 🤦🏻♀️
Is it contagious??? 😷😷😷
The real main question on everyone’s mind, yes it is!! 😬🙄🤧
Only if you never had chickenpox as a child and if you never got vaccinated as a child.
So as I will be doing, keep away from new born babies, infants, toddlers who never received their vaccination. Better yet, I’ll be isolating myself for 7 days to keep safe and not infect anyone or child. ~~•~~•~~•~~•~~•~~•~~•~~•~~
What to do if you have the virus: 🤔🤔🤔
Keep your rash covered, keep clean and disinfect your surrounding. Take your prescribed medication as in my case, #valcyxlpvir for 7 days and it should clear up.😁 ~~•~~•~~•~~•~~•~~•~~•~~•~~
Alright so that’s a wrap folks as I’m trying to push my self to be positive and go home to rest and pray some more!!!! ~~•~~•~~•~~•~~•~~•~~•~~•~~
Ciao for now 👋👋👋 #imouttahere ✌️
This was from a while ago, but before Thanksgiving, the dining hall at my college put on on a Thanksgiving dinner. It was traditional Thanksgiving food, but there were also vegetarian options and shrimp pasta stir fry. However each station of traditional food had sweet potatoes, which I’m allergic to, so I was worried about contamination with the other dishes! And besides that I don’t particularly like turkey or shrimp. So the combination of gluten-free, sweet potato allergy, and picky eating habits led to a bit of a stressful situation for me—added to by all the people in the dining hall. But I found the head chef and they made me safe pasta with marinara sauce! Sometimes I feel bad for asking, but they were happy to help and it made my day! And as a bonus to the thanksgiving dinner, there were fancy gluten-free almond flour cream cheese cupcakes! 😊 Luckily this has been the only larger issue I have come across in the dining hall!
Ahhh! This is what I've been waiting for! I'm so excited Young Living has select items from the Thieves line, Ningxia Red line, and Savvy Minerals makeup line 20% off for Cyber Monday. These are things I believe every single person should have and use in their home. I'd love to help you make the switch to safer ingredients in your home.
Why Thieves? Thieves cleaners are 100% plant and mineral based. They are effective and safe to use in your home around children and pets. In fact, my kids clean my house and I don't have to worry about a thing! You can use the household cleaner to create a scrub for bath tubs and sinks, a solution to mop your floors, and a spray for your windows and countertops. We use Thieves and only Thieves for cleaning in our house. 👍
Why Ningxia? Basically, it's amazing. Super high in antioxidants that help fight free radicals in the body. Check out this link: https://doctorjimbob.com/ningxia-red-4-reasons-it-is-the-bomb/
Why Savvy Minerals? Did you know the average woman puts over 500 chemicals per day on her body. Most of that is from makeup, cosmetics and other beauty products. And that’s not the worst part… the skin actually absorbs 60-70% of what’s used topically. So why not give your makeup a MAKE OVER and swap them out with non-toxic alternatives. And here’s the best part… you CAN get beauty without compromising your natural and non-toxic lifestyle. No gluten, No soy, No mineral oil, No petrochemicals, No talc, No parabens, No nano-particles, No phthalates, No bismuth, No metals, No synthetic dyes, No synthetic fragrance
Today is MRCP day. It comes annually for me now. I have primary sclerosing cholangitis, a disease that affect the liver and bile ducts and might certainly end in a liver transplant. I probably could have gone another 15 years with IBD and not known about it, but I had a tiny bump in my liver enzymes when I was first diagnosed with Crohn’s disease and my hyper vigilant GI ordered the first scan and there it was. I hoped it wasn’t real and that maybe it was artifact. Today was my 3rd scan. It’s not artifact. It’s something that I may not be symptomatic from for a long time. .
I take care of myself because some day my body will need me to be strong and my mind stronger. Days and weeks go by through the year when I don’t even think about PSC because I can’t control it and it’s not treatable at this stage of the game. I know I serve a gracious God who is in control. He keeps me positive but grounded. .
Now is the waiting game and even though I know my liver enzymes were normal just 2 weeks ago, I still have to wait and hope my scan is stable and hasn’t changed. .
PSC is rare, but it’s more likely in people with Crohn’s or Ulcerative Colitis. #beaware#primarysclerosingcholangitis#PSC#IBD#crohns#colitis#rarediseases#mrcp#autoimmunebadness#godsgotthis
So this past weekend I was in the hospital as my PSC symptoms started to act up again. This time the pain was unbearable and I’ve finally started to recognize the signs that something is wrong. #Alhumdulillah , I am stable and waiting to proceed with an MRCP as an outpatient.
I would like to thank all the family members and friends who contacted me to send their well wishes, positive support and prayers. We’re truly grateful that Allah is aligning and surrounding us with great people who are of positive, spiritual and compassionate nature.
Since I can’t sleep at night because of my symptoms, PSC has given me the late night hours to reflect , appreciate, express and love more.
This disease is bringing me closer spiritually towards Allah, it is a blessing otherwise I would have never had the time to read and pray as I was always on the go, career driven and always tired. I am truly enjoying the readjustments of my priorities, Allah and my family first. And of course my health too! Hehehe
To my daughter Aliyah, thank you for your love, care and marssages. You are my strength, my everything, my world. To my hubby, you know what I’m thankful for. 🌸💖🌟 To my family and friends in Toronto, thank you for giving me company on WhatsApp and making our conversation humorous, sending me videos and our tel. Conversations. I love and miss you dough dough brains! 🌸💖🌟 To my second family and friends in Montréal, thank you for being there for us immediately early in the morning, taking care of Aliyah as if she was your own (even with the 6 kids in your home, without hesitation you took her in) thank you for making me feel at ease while I was at the hospital. It truly is rare to find good people now a-days who will provide the love and support your family has provided to my family and I. I love you guys as my own sisters ps - tell aunty I said thanks for packing us food. 🌸💖🌟 To my third family, the closed PSC support group on Facebook - thank you all for your love and support. And I appreciate everyone who took the time to answer all my inquiries about this mean illness. I am forever grateful. 🌸🌸🌸 #thesepainkillersgotmehigh 😂 #lovethisswagfilter
When you have IBD, especially while flaring, access to a restroom in a matter of seconds is important and we don’t have time to argue with an establishment trying to make us purchase something first. There are a few times I have been tested by people so It’s helpful to flash someone one of these and save yourself time. I keep one in the back of my phone and another in my car, you can get them for free in the mail with the Crohns and colitis foundation’s website 😁 👍🏽
✨ Good morning ladies! Today we want to share with you an Everyday Women Spotlight and introduce you to Angela Perger of Simple Ayurveda. 🌿 Simple Ayurveda makes the ancient science of #Ayurveda , the worlds oldest mind-body health system derived from India, easy to understand, relatable and totally possible for you to apply into your modern day life so that you can be your healthiest, most vibrant self.
Angela found Ayurveda and yoga 15 years ago when a serious case of mono led to a diagnosis of #ulcerativecolitis and the extremely rare autoimmune condition #primarysclerosingcholangitis . Her doctors told her she’d need to be on meds for the rest of my life, and have a liver transplant within 10 years and would also never to be able to have children. (INSANE - we can’t believe it either)
Ayurveda and #Yoga was what she used to heal her own ulcerative colitis — she is now healthy and an amazing mama — and she is bursting at the seams to share how you can incorporate this amazing ancient science into your own life. Catch her at @simple_ayurveda where she has tons of informative blog posts, a podcast and access to consultations and so much more! ❤️
Thank you Angela for making your mess your message and being a light for others who are experiencing this type of suffering in this world. You are amazing!