Invisible Illness Alberta

Invisible Illness Alberta My journey with EDS:
A place for people with invisible illnesses to feel connected.

Did you know our anniversary was in the 1st? Did you know that I was actually in this same hospital on our wedding day? ...
06/06/2026

Did you know our anniversary was in the 1st?
Did you know that I was actually in this same hospital on our wedding day? (Severe migraine & getting violently sick)

Finally starting to feel like a human again. I’m strong enough to move my own body parts now, I can sit up in bed & I was cleared to eat some ice chips. (Still on full TPN - IV nutrition)
Not sure how long I’ll be here for but hopefully not too many more days. I was so sick that I didn’t know what was out my window (it’s the circus 🎪), I haven’t thought about food or coffee (today was the first day).
It’s so scary to be so sick that you are lifeless body that can’t even adjust your pillow or itch your nose.
Adrenal crisis can happen faster than I thought but I’m sure there were lots of contributing factors.
There were so many negative things about the beginning of this hospital stay & a HUGE contributing factor is directly related to the healthcare crisis that Alberta is currently in.
On more than one occasion during this admission, I could’ve easily been the next person to be in the next tragic news article. Somehow I was lucky to get a great ER doctor that kept me on as his only patient over the weekend because I wasn’t considered stable enough to transfer hospitals. Over the week I had one of my internists good friends take over my care & continue fighting for me. It really made a huge difference.
If you have been privileged enough to not need emergency care or a hospital in the last few years, consider yourself very lucky. It can be really scary to rely on a system to save your life when the system itself is so far beyond repair. Of course every ER story isn’t going to be bad but the fact that the risk is still there when dealing with human lives is unbelievable.
So everything is getting better now, for us, we will start to get back to regular life soon but people don’t realize the emotional toll it has on you & your family & it doesn’t end when you leave the hospital. It crushes people, it breaks apart families, it literally ruins lives simply because they forced to advocate for basic health care in an emergency. .ab .irwin

They needed more vein access to run three things at once that weren’t compatible. Since TPN is considered life support, ...
06/04/2026

They needed more vein access to run three things at once that weren’t compatible.
Since TPN is considered life support, it gets first access to my port. I’m low on fluids and potassium but had too much salt… TPN can difficult to manage and get right.
Since my veins are too weak and fragile, they opted for deep vein ultrasound IV access for albumin but that went interstitialin less than 15 minutes so bowxnwcthat was unpleasant. Just down to my port again 😔

Severe muscle weakness very slowly improving in some places, back in TPN, can’t event eat ice, potassium is still going ...
06/03/2026

Severe muscle weakness very slowly improving in some places, back in TPN, can’t event eat ice, potassium is still going down despite getting potassium infusions. They are running so many tests which has been really good having trouble mri because they don’t think I could handle a transfer right now. Very slowly improving too and some ther really scary stuff happened but hospital management is helping me with it.
Adam is still in the ER and I don’t think he has his pone.
That’s all for now it is so hard to focus my eyes and type that’s why everything is so messed up looking. The kids are getting checks but could definitely use some support if you can.

As most of you know Kyrie has been at the hospital the past week. And she is very slowly starting to see improvement but...
06/03/2026

As most of you know Kyrie has been at the hospital the past week. And she is very slowly starting to see improvement but not stable enough to transfer hospitals. As this has been quite significant to the family Adam has also been re admitted to hospital due to mental health crisis. He cannot leave voluntarily at this point. They still don’t know what the plan is for either one. Kyrie is not in stable enough condition to even write this post. That is the short update.

Still here, extremely hard to read and type, I’m in rough shape but have great doctors, I think I might start tpn today....
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.

How many hospitals can one person visit in less than week? I guess it’s 5 so far. These last few days have been incredib...
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.

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...
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

🦓 EDS & HSD Awareness Month 🗓️ Day 20📸 POV: Living With EDS or HSD💬 This was my day yesterday; busy day so I didn’t get ...
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

🦓 EDS & HSD Awareness Month 🗓️ Day 18📸 What Rest Means To Me Now💬 Each day, rest looks a bit different… As time goes on,...
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

🦓 EDS & HSD Awareness Month 🗓️ Day 17📸 A Message To Someone Newly Diagnosed 💬 Sadly, if this is a new official Dx for yo...
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

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