Pulled over and watched it go down! 🙌🏻 When the Lord himself stops you in your tracks... you breathe, breathe in the air
set your intentions, dream with care,
tomorrow is a new day for everyone,
a brand new moon, brand new sun...
1 1547 minutes ago
Balsamic pesto chicken topped with fresh mozzarella and parma rosa penne on the side. (To be honest, the family ate this. I had a handful of caramelized Spanish pecans and a glass of orange juice.)
Life's hard when you're this cute. Our fave Birdie Pots from @milksugarmelb keeping our plants happy since forev's. Available in 4 colours and 2 sizes. Each pot features a glazed removeable saucer and a drainage hole with plug. Hit the link in our bio to shop the #birdiepot 👆 #indoorpots
My first lab was today and lemme say it was very different from Anatomy 1. We learned more about the endocrine system, went over negative feedback loops, and then in groups we calculated what hormones were given to our imaginary rat subjects based on their changed gland weight. It was honestly super fun and I made a friend which is something that isn't easy for me to do. Tap is also something I'm struggling with, my hips are not strong and when it comes to balancing for a back step or Irish I falter. I have the core strength but my hips refuse to stay put. Today I even subluxed my TOE it HURT. My brain and legs dont communicate as fast as normal people and it's beginning to discourage me. When people see me doing well it is not because it comes easy. Hours of studying, practice, at home physical therapy, and tears get me into the same level as someone who kind of studies or practices when they have time. Being hit in the face with reality scares me and I'm beginning to look into "back up careers" in the medical field just in case. It sucks. So much. I have so much fight in me but the world also needs to change and become more accessible. I am just as qualified as any other nursing student but I need people to be able to level the playing field for me. I was productive today and I'm proud of that but I'm also still coming to terms with my ehlers danlos and what its taking away from me.
My ‘why’: I used to be really unhealthy and unhappy - I smoked over a pack of cigarettes a day, I’d eat nothing but fast food, I had no interest in exercise, I wasn’t taking care of myself physically or mentally, and I was really unkind to myself all around. I was stuck and overwhelmed to be anything but. 🌻
Little by little, one small decision after another, bad habits replaced by good, and I began to find joy, self acceptance and peace within myself. I started to become more aware of how my actions impacted the world around me and wanted to make a difference. 🍃
That’s my why - to hopefully make a positive difference in even just one person’s life by sharing pieces of my wellness journey and show how a healthy, happy life can manageable, even when it feels like you’re stuck or don’t know where to begin and to share my struggles, too, so you don’t feel alone on your own journey.
➡️ Then and now - swipe to see 2010 vs 2018. I literally don’t look like the same person 🙈 I certainly don’t feel like the same person. And while there’s still a whole heck of a lot I have to learn, I’ve never been more sure of being right where I’m supposed to be 💛
A year on from my most recent #surgery and though I'm struggling with multiple health factors right now, I may just be getting some answers!!!!!!!!! 😦
🥄 Its scary and sad having more things 'wrong' with you but I MUST remember that a #diagnosis IS an answer 🙌
These answers HOPEFULLY then become the start of getting the appropriate help and somewhat managing what you've got, before it develops into anything more serious.
🥄 I've started on new/extra medication 😪🙃 that I had to wait til my #sigmoidoscopy and #transitstudy were over with before I could start, which I pray will help with this new diagnosis of a #delayedguttransittime.
I don't feel so crazy now and I just hope and pray that the lifetime of issues I've had with my #GIsymptoms only improve. Since the start of 2017 they have been incredibly #debilitating, making it hard to want to go on. But at the moment, there is #hope. I see my GI specialist in march to discuss it all.
🥄 Tomorrow I'm back at the #doctors after being on antibiotics for something which internal testing flagged, which I haven't been told about yet, so I pray they have worked. Whatever it was/is has been quite concerning and has really knocked me for six.
Having this, as well as little ones #seizures has taken its toll on me but I know we will get there and ultimately, we WILL be okay. We've got eachother and we've got an incredible family, that's all we will ever need 💛
🥄 Be sure to look after yourselves and no matter how much you're having to fight professionals, society, illness or yourself, know it is worth it. Because your life is so so worth it. You're precious, important and loved. You'll always have a friend, or family, in me.
Love and gentle hugs, as always ✨✨🥄🥄💛💛
~swipe to see my newest kind of mcas reaction~
Ever since I was little I very rarely got fevers. Yet I would get flushed across my face in a shape of a butterfly. I would have the symptoms of a fever yet my temperature was always normal. ✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰
Not until my MCAS diagnoses and some research, we put out to and to together. It was symptoms of MCAS. Now my MCAS is alot more serious with alot more symptoms. Although I do get Xolair Injections that help significantly! Recently I have been getting this "butterfly rash" alot more. ✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰✰
This rash appears on my face in a butterfly shape. Causing my face to swell and have the symptoms of a fever without actually having one. I wanted to know if anyone gets this (if they have MCAS or anything else)? And if you know a cause. Any info will help!
Image Description 1: Stella laying on a hospital bed waiting for her Xolair Injection
Other Image Descriptions: Stella having a "butterfly rash" on her face
Things I’m still not good at: planning a day with only 2 activities that require me to be mentally available for people other than my family of 4.
I get so excited on my good days that I fall into my decades-long habit of trying to pack it all in.
I just LOVE seeing people I care about, taking care of loose ends, and making progress. .
One of the most frustrating parts of doctor after doctor trying to diagnose me with depression through the initial years of digging up the health journey is that I never wanted to be isolated! I didn’t want to be in a dark room or canceling plans or declining invitations to celebrate a new baby on the way or a friend’s birthday or a work promotion. I kept missing my life and I could see the life I built for so long crumbling away. Friendships fell off because I couldn’t eat out anymore, connections dwindled when I couldn’t respond or reach out as often to offer support or just a “thought of you.” I was never depressed. I was always hopeful, always working hard to find the next possible step to getting me out of that damn bed and back into the world of connected people who are living their lives. 🗣Please don’t let a doctor who isn’t hearing your actual needs delay your recovery. Keep asking for more and more resources so you can get back to your life and fulfill your dreams.
Also, if you find yourself on the healing journey, be gentle in your relaunch, AND in how you treat yourself when you overdo it. We are still learning how to move at the slower pace and our enthusiasm doesn’t provide more mitochondrial fuel, no matter how much you try to convince your cells to do so. 😘
There's so much content on social media these days, how do you choose whom to follow? I don't want to be just another talking head clogging your feed.
Tell me, please, what content from me is most helpful for you on your healing journey?
Inspirational quotes? Food pics and recipes? Live videos of my self-care routine? Journal challenges? And more...
I have it all available, but I don't want to post it unless you want it. I don't want to waste your time (or mine). There's enough junk on the Internet already.
So, comment below or DM me privately and tell me what you want and need this year, ladies! Your contribution is very much appreciated and I look forward to serving you better in the year to come. XO
mugs. mugs. mugs. this is the most pieces i’ve been able to turn and handle in just two days. excited to see what these become in their finished glazed glory in the coming weeks.
1 171 hours ago
COLONVERSARY • Six months ago today I had a laparoscopic total colectomy with anastomosis. The surgery itself was easy, but the complications were not. I had been given thoracic paravertebral blocks before I was taken to the OR—which act like an epidural during labor, except they did one on each side of my spine—and ended up accidentally puncturing my lung, so I wound up with a pneumothorax. They didn’t figure it out until six days post op, after I had just been discharged. I complained of severe chest pain and clicking the whole time I was in the hospital and they did xrays but they didn’t read the report; I was told that it was referred pain from my surgery, but I have had a pneumothorax before so I knew that’s what it was.
I found out because my medical records app notified me I had new results and I read the two X-ray reports. I was already planning to go back to the ER because the pain was getting worse, but needless to say my surgeon was shocked when I called her to tell I found those results. Unsurprisingly, I ended up being readmitted for another 5 days. 🙃
The past 6 months have been hard. I was diagnosed with EDS one month post-op, ended up in the hospital a couple months post-op for dysmotility issues. I’ve been on a blended/puréed diet pretty much ever since because otherwise my medication doesn’t absorb properly. I don’t regret doing the surgery (I had a *severe* case of colonic inertia with constant pseudo-obstructions), but I wasn’t expecting to be able to tolerate fewer foods than before. I wasn’t expecting my whole GI motility to be as bad as it is. Here’s to not looking 6 months pregnant🤰 all the time. 🥂 (There are photos of colons; the dark one is mine and the other one is a close to the color a colon should be/what it should look like.)
First shipment of live bees arrived today! 🙌 Before this I’ve been grabbing bees from my front yard using tweezers and patience since I only need three per week to start. About to transfer them to their bee buddy where they can get some space. 🐝🐝🐝🐝🐝🐝🐝🐝
Bee venom therapy update:
• I’m about to start week 3. • Still only at one sting 3x a week even though I’ll be working up to 10 stings 3x a week. • Having significant fatigue, muscle and joint aches and pains, and overall am feeling like 😐 the evening of stings. Occasional headache. • Histamine flaring a bit, mostly itchy with some raised welts at sting site. But occasional generalized itchiness. • Irritable /short tempered (I notice this is a high histamine symptom for me). • Increased rashes and skin issues • Also sweating a TON and I can smell myself (not typical for me!🐷😂)So I know bugs are dying!!! I’m amazed at how powerful the die off can be from ONE sting. Which is why I haven’t increased the stings yet. Overall it’s been very tolerable though. **ASK ME ANY BVT QUESTIONS IN THE COMMENTS!**** #beevenomtherapy#bvt#beevenom#lymedisease#lyme#chronicillness#ebv#healingfromchronicillness#hypothyroidism#adrenalfatigue#potssyndrome#pots#mcad#mcas#mastcellactivationdisorder#antiviral#antibacterial#antiinflammatory#histaminemodulators#evidencebasedmedicine
My counsellors office has such a nice atmosphere to it 🥰 and it went from such a chill one... to this one.... ➡️
My counsellor sent me to urgent care to make sure I didn’t have a significant head injury from when I hit my head on Monday morning because since then, the pain and symptoms have gotten worse. 😢 This morning I woke up in more pain and with blurry vision. As well increasing feeling of pressure in my head. I agreed with her and felt it was better to be safe than sorry and to be checked out. So here I am.. This is such a headache.. Pun intended? 🤔
If my POTS gave me a concussion I STG 🤬
Traveling with chronic illness makes everything so much more exciting. 😂 From the compression socks to the various braces to the mask, it’s just a little bit different. I prefer to keep things simple and appear as normal as possible, but this time my doctor encouraged wearing a mask while on the plane. (Affectionately known as the Titanium Tube of Torture 😜). .
I did my research on reusable masks and decided to get a Vogmask—mostly because of this beautiful color/print if I’m being honest. 😂💜 The mask was very comfortable for 6+ hours and instead of freaking people out it made them smile! Bonus points for that. 😜 .
Also I’m glad to say we finally made it to MEXICO!!! 🎉 Vlogs and pictures coming soon. ☺️
4 13620 hours ago
50 SHADES OF DARK CIRCLES • I’ve never cried as much, as frequently as I have been lately. (Also, crying gives me migraines so it’s even more fun!) Candice told me last night that she has noticed my brain not working like it used to (I’m slower, have a harder time talking, will say 2-3 similar words before I get to the right one, etc.). She also told me that she can tell I’m in a lot of pain virtually 24/7 based on how I move and how often I grimace. 😢 None of this was news to me, but I didn’t know she noticed it. She broke down crying and then I also broke down crying, so we both held each other as we talked it through. 😭 It was beautiful and heartbreaking all at the same time. 💔
This sh** is really hard. It’s harder for me because I live it 24/7, but it’s also really hard for her to watch. 🥺 Lately things have been changing pretty quickly and it’s scary; at some point hopefully it will slow down, but it’s pretty terrifying for both of us because we don’t know where things will level off. My pain has been extremely hard to manage and I’m in the process of trying to sort things out neurologically. Tomorrow I’m doing 5 hours of testing to see where/how badly my brain is slipping and I should be having a slew of other tests soon to try and identify the cause of my CNS vasculitis.
None of this feels doable. I used to get a pedicure for example, and that would renew my resolution to fight for a while. Nothing does that anymore; I feel overwhelmed all the time. For now, I’ve increased my sessions with my chronic-illness-specializing therapist and I’m hoping to get some of the medical stuff addressed. Candice strongly urged me to call my pain doc’s office today so I can see my doc ASAP and she’s going to try to come with me. I’m going on Monday and I’m looking forward to hearing some solutions (this doc always is two steps ahead of me).
Old picture but a little update for everyone (possible TW for weight). I saw my GP on Mon morning after 3 days of vomiting all fluids and 11 days of no nutrition. She was really concerned by how dehydrated I looked so admitted me to hospital. My bloods weren’t great at hospital- I didn’t have an Acute Kidney Injury but they said I wasn’t far off, so I was given IV fluids and admitted. Unfortunately my hospital had to shut down the gastro ward because of fire risk, so I was left in the Assessment Unit, which was awful. There was a lady with dementia who screamed full volume day and night, and all the other people had flu or chest infections, which really affected my mental health. As I had lost 11lbs in 10 days we were keen to talk to the doctors about what the next steps for nutrition were, but they were very against feeding tubes. They said most young people with gastroparesis end up on TPN after a few years of feeding tubes so they want to try every possible thing before trying an NJ with me, which I agreed with. So basically, the plan now is to get palliative care involved to help with new nausea meds, start lots of new supplements and go back to hospital for fluids/IV sickness meds whenever I’m flaring. They wanted to keep me in for another few days but mentally I couldn’t cope on that ward, so they agreed to discharge as long as I see my GP/dietician asap. I think I’m going to take a break from this account as I’m just not coping well mentally, but thank you for everyone’s help these last two years, I couldn’t have done it without you 💕
12 12016 hours ago
I always find my autonomic dysfunction the hardest thing to explain to people. It affects so many different systems in such random and variable ways! This card gives a good start to the process of getting someone to understand my normal :)⠀
Card from our website, see link in bio.
Dear Body // You and I have changed so much in the past few years. We used to thrive on spontaneity, travel, those long nights with friends so perfect that time stood still. Low pain days were our norm, doctors appointments a yearly rather than weekly occurrence. Do you ever let yourself think about what would’ve happened if we never got sick? Would we have ended up doing the Peace Corps or moving to Central America like we thought? Would we still have pursued human rights activism as a career? Would you have scars from exciting adventures rather than surgeries? These questions used to make me sad, but now they bring me a sense of peace. You and I are now a team, Body, in a way I never thought possible. I love and respect you so deeply for carrying me successfully through procedures and illness and pain. Maybe we haven’t made it back to Guatemala, but your scars are a roadmap of the journey we’ve traveled. Together, we’ve discovered new depths of resilience and vulnerability, of grief and celebration. We’ve learned to celebrate the tiny wins and lean on others when things get too heavy. Most importantly, we’ve learned that we can do anything as long as we take care of each other. I promise to love you and all your “imperfections,” and I know you’ll do the same for me. My only regret is that it took illness to make me realize what an amazing being you are. I promise I’ll never forget again. Body, thanks for growing with me as we figure out this brave new world together. Here’s to many more lessons learned and challenges faced ❤️ (it would, however, be really cool if you could not do anything crazy for a while — ya girl needs a break 😘) #choosehappiness#intracranialhypertension#shuntlife
I have noticed that the more I put myself out there, both on my vlogs and here on Instagram, I have started to get a lot of questions about two things. My clothes, and my jewelry.
So I figured I would try to kill two birds with one post.
Maybe someday I will show you all my bracelets and their meanings. You have already seen a few of my rings... So lets start with necklaces!
The necklaces I am always wearing are:
(On the shorter chain)
A Key Pendant with the word “Inspire” engraved on it from @thegivingkeys (No I have no idea where it leads, if anywhere, but that’s what I like that about it)
With it there is a little silver elephant charm from my friend @journeyofchiari since he knows how much I love elephants. 🐘
On the long chain I have a silver pendant that is actually a biofeedback tool to calm and control my breathing from @komusodesign
and a silver washer from @myintent that I hand stamped my word of the year into, “Vulnerable” .
As for my clothing, I really want to do a video about dressing/style hacks with medical/assistive “accessories.” It will definitely be a series, I just need to know where to even start!
What do you guys want to see first? Dressing with a feeding tube? A port? A neckbrace? Knee brace? Let me know in the comments! .
Today I chose a high neck bralette from @threebirdnest (I get almost all my bralettes from them or @aerie ) to disguise my accessed port and surgical scars, and a little wrap shirt from @urbanoutfitters to camouflage my feeding and IV tubing.