https://linktr.ee/Invisibleillnessalberta

Invisible Illness Alberta, Edmonton, AB (2026)

06/01/2026

Still here, extremely hard to read and type, I’m in rough shape but have great doctors, I think I might start tpn today.
Adam and the kids would love skip cards please, Adam has been working so hard to help keep me alive the last week. I’m still not stable enough to transfer hospitals but doing not AS bad as yesterday I’ll try to explain when I’m healthier stronger and can see properly.

05/22/2026

How many hospitals can one person visit in less than week? I guess it’s 5 so far. These last few days have been incredibly difficult.
Then today H called me about an hour after I dropped him off at school. He was playing football and thought for sure he broke his finger, it was super swollen and still is. Still caught the ball btw.
Went to Westview, waited in the triage line for a full 20 minutes and it did not move once, there were 4 people ahead of us and 4 or 5 behind us. We ditched and went to the Sturgeon, got in right away. Thankfully not broken! Just a bad soft tissue injury.

Also, meet Hoodle the Poodle 🐩 😊 I definitely needed a therapy dog in my life today.

05/22/2026

I’ve been MIA for a bit as we are dealing with a family emergency. I’ll get back to the photo challenge as soon as I can.

Also, I don’t think people realize how broken our healthcare system. I don’t think they know how bad it actually is inside the hospital.
20, TWENTY!!! stretchers with patients on them, lined up down a hallway waiting for a room and every single chair full in the waiting room still.
If you are lucky enough to not have to experience this, I envy you, I’m jealous, I’m angry, I’m upset. This is how patients die in the waiting room. irwin .ab

05/20/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 20
📸 POV: Living With EDS or HSD
💬 This was my day yesterday; busy day so I didn’t get around to making a post for yesterday.
6:00 am - wake up
7:00 am - leave for C’s infusion, have to be at the U of A by 7:55 am, I usually take her every week but thankfully my husband was able to take her today.
8:00 am - drop H off at school
11:30 - C gets home from infusion
1:00 pm - leave for more appts
1:55 pm - parking is down!! Free parking today only! This never happens and parking is usually between $10-$25/day
2:00 pm - Urology 7B @ the Kaye Clinic to get my pacemaker turned off
2:15 pm - husband home to pick up Holden from school
2:45 pm - Brain MRI (level 0 of the Kaye)
3:45 pm - get pacemaker turned back on
4:00 pm - bloodwork at the Kaye
4:15 pm - finally done & get to go home, there is always so much traffic, I waste a lot of my waking hours sitting in traffic
5:15 pm - got home, had a snack
5:45 pm - left for baseball in Stony with H
9:15 pm - finally home for good & get to get ready for bed

I missed my support group in St. Albert yesterday because I just had too much scheduled already.

Rarely do I get a day with no appts or things that need to get done. I have to do lots of paperwork for FSCD & medical records/expenses, phone calls, scheduling, school meetings, kids appts too, advocacy, trips to the pharmacy, sometimes the ER, sometimes I’m hooked up to an IV bag at home & just stuck.
On top of all that I have to do regular mom things, homeowner things, groceries, friend things, two dogs…
Living with a disability is far from being lazy, we actually often have to work twice as hard to function in society.
Did you know that the current AISH max allowance is at least $5 less than minimum wage? If you have a spouse that works, you get $0. The AB government is in the process of switching AISH clients to ADAP & people with disabilities will be getting less money & supports than they currently are. The AB government currently provides a $2000 living allowance to their MLA’s to help with housing costs. That’s $260 more than the entire monthly payment of an AISH recipient.
…danlos

05/19/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 18
📸 What Rest Means To Me Now
💬 Each day, rest looks a bit different… As time goes on, my body needs to rest longer after something, it needs to rest in preparation for something & even while doing something.
Rest is hard! It’s hard not to boom & bust, to go hard then deal with the unknown crash that comes after. Those crashes are getting longer & harder so now I have to pace & plan instead.
I often wish others realized how such simple things can be so hard on my body, I desperately want people to understand so I can have compassion & understanding without having to complain or spend my last little bit of mental capacity explaining it in a way that makes sense & will be taken seriously.
I have immense guilt for letting people down, friends, family, husband, kids, work… when I need to rest, cancel, reschedule or change the plans completely. I want to be really good at being a friend, a wife, a mom & I often push myself too hard trying to do just that because those are my favourite things.
It has been incredibly difficult to keep adjusting as my health goes up & down, over & over, for the rest of my life. I almost always feel bad or guilty for resting, I feel like I’m not helping or contributing.
In the end, I just wish everyone truly understood how gruelling this disease is, every minute of every day.
…danlos

05/19/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 17
📸 A Message To Someone Newly Diagnosed
💬 Sadly, if this is a new official Dx for you, you’ve likely been advocating, learning, researching & searching for answers for many years now.
If you are just starting your journey, suspecting EDS & trying to figure out what is happening with your body… this message is for you.
I could seriously write a book but this has to fit into an Instagram post so I’ll share my top 3 😊
- I wish I had a resource that was factual, easy to read & understand, that not only had the criteria/diagnostic checklist but a list of how it could possibly affect each part of my body & the comorbidities that might come along with it. I still don’t have this but if you know who you can reach out to for help (me 😂) someone can do this for you.
- If you don’t have one already, get a referral to an internal medicine specialist. They can be your home base, where all your referrals can come from & results can be reviewed. Technically your GP can do this too & you can still definitely see them for lots of things but having an internist can give you access to a lot more. They can offer more time for appts, a broader network of medical professionals to collaborate with, have knowledge about more complex things & they can order specialized tests & diagnostics that a GP can’t. Internists will also have hospital privileges with at least 1 hospital, sometimes more; this helps keep things more streamlined if you are in the ER or admitted.
- Don’t be afraid to stand up & advocate for yourself, you got this!
…danlos

05/16/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 16
📸 My Type, My Experience
💬 So far my diagnosis is hEDS although I have VUS on a cEDS gene; my geneticist will do more testing after more research is done, there just isn’t enough data yet.
My experience… oh man! Where do I even begin? I’ve had some good highs, some low lows & everything in between. The past 5 ish years have been wild I’ve been through so much. Thankfully, I’ve been documenting just that on this page. If you want to know more, look back through my old posts, send a message, ask anything 😊
…danlos

05/15/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 15
📸 Wear
💬 Join the campaign today Friday, May 15, and help to raise awareness of vascular Ehlers-Danlos syndrome (vEDS).
To take part:
🔴Wear something red
🤳Post a picture on social media with the hashtag

Vascular Ehlers-Danlos syndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs. vEDS can cause life-threatening complications, such as aneurysm, dissection, and rupture of the arteries and rupture of organs, mainly the bowel.
vEDS is a rare condition that affects roughly 1 in 100,000 – 200,000 people.

vEDS is caused by genetic variants in the COL3A1 gene. The COL3A1 gene provides instructions for making type III collagen, a major protein in the walls of blood vessels and hollow organs. vEDS can be caused by faulty type III collagen or by a reduced amount of type III collagen.
…danlos .voices.canada

05/15/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 14
📸 Something I’ve Learned From Research
💬 One day I met the most amazing respirologist, Dr. Janice Richman-Eisenstat. I saw her after my Pulmonoligist referred me as my complexities were becoming beyond her scope.
My first appointment with Dr. Janice was exciting; she was excited about my complexities and said she couldn’t wait to follow me. My second appointment with her and she presents me with this research paper: ‘A review of respiratory manifestations and their
management in Ehlers-Danlos syndromes and hypermobility spectrum disorders’ and says, “I came along this research paper and I think it explains a lot about you, you check every box.” Sure enough, I did.
Now when I see her, she bring a team, colleagues, interns, students… when she introduces me she often says something like, “This is Kyrie, she has Ehlers Danlos Syndrome and doesn’t fit in the box and I invited you here today because you can learn from her, things you won’t learn in the classroom, she continues to inspire my excitement about my job.”
I’ve never had a doctor excited to have me as a patient, most doctors will outright refuse to see me because I’m too much work.
This little research paper restored my belief that not only good doctors exist, but exceptional ones do. ♥️
🔗 https://pmc.ncbi.nlm.nih.gov/articles/PMC8312172/?fbclid=IwAR3BADlDmRZpZCGKo8jVc2lxOgIXfpIUTGAY7m0idr_jELjQnWhBd0CwSwg
…danlos

05/14/2026

🦓 EDS & HSD Awareness Month
🗓️ Day 13
📸 Living With Comorbidities
💬 Main Dx
-Ehlers Danlos Syndrome
The rest will be listed in the comments… it’s exhausting. I need a different doctor for almost every different system, body part or diagnosis, even having teams of doctors for some.
When things go south it’s hard to know what’s causing it, but eventually you learn your own body. When my resting heart rate drops, my potassium is low, if I go into a junctional heart rhythm, it’s critical. If I’m throwing up for more than 24 hours I have strict instructions to head to the ER for specific medical treatment for adrenal insufficiency and either prevent or treatment of metabolic crisis. Learning the difference between bone pain, muscle pain, ligament pain, MSK, nerve, damage, etc.
It’s extremely hard managing everything that comes along with EDS. Every day is different, every person is different & things are always changing.
So far there is no cure for anything and just symptom management.
It’s taken hours, days, weeks, months and years of appointments, diagnostics, testing, scans, telling your story over and over, ER trips, surgeries, complications, research, continuous learning… and it never ends.
…danlos

Invisible Illness Alberta

06/01/2026

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05/14/2026

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