Invisible Illness Alberta

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

Gotta love a readmission less than a week of coming home from one. Please send all the help. SKIP cards for Adam and the...
10/10/2026

Gotta love a readmission less than a week of coming home from one.
Please send all the help.
SKIP cards for Adam and the kids or something from the Amazon Wishlist would be the most helpful are and are greatly appreciated.
I’m not well enough to have visitors yet but if you are already at or near the Alex, I would absolutely love a coffee and a quick visit between doctors and tests.
♥️
https://www.amazon.ca/hz/wishlist/ls/1SEEHQYW9ALZ5?ref_=wl_share
IAFFLocal3021 Global Edmonton CTV Edmonton CBC Edmonton I have a more info about ER and hospital transfers and dire ER care in like not getting a bed and having to spend 6 hours in the ambulance bay with 3 paramedics having to provide medical care in between hospital transfers 😊 Janis Irwin Sarah Hoffman Sarah Komadina Jasmine King Erin Rutherford Adriana LaGrange Alberta Health Services Alberta Government Danielle Smith

Had some small troubles so stopped at Westview Wednesday which led to me being admitted back the Alex
10/09/2026

Had some small troubles so stopped at Westview Wednesday which led to me being admitted back the Alex

Today was a totally terrible day. So many phone calls to make, appointments to schedule and bloodwork, etc. Today I had ...
10/06/2026

Today was a totally terrible day. So many phone calls to make, appointments to schedule and bloodwork, etc.
Today I had a pre-op call for surgery in two weeks… but… my pacemaker surgery is being postponed at least three months!!! 😠 it was supposed to be in two weeks after waiting three months for it already but I can’t have any blood clots going into surgery or on high dose blood thinners ugh 😩
It makes sense for safety obviously and I need to take every precaution because my body isn’t normal, I’m just really grumpy about it as it is causing me pain and a lot of discomfort meaning I often have to take extra pain meds that I don’t want to be taking.
I cried like a two year old when I got home now I think I’m mostly over it just still a little let down, especially after the last few weeks being so rough.

Then I open my mail and instead of of ambulance bills, parking tickets, bloodwork, or medical forms to fill out… it was this. ♥️ I’ve donated to MOMS Canada at least once for sure for June Dresses and I think another time for something else. Cherise is a beautiful mama and all around human being. ♥️ it was exactly the mail I needed to open today.

Always updating my LinkTree, if there’s something you think would be helpful to add, please send the info my way! I will...
10/05/2026

Always updating my LinkTree, if there’s something you think would be helpful to add, please send the info my way! I will add GoFundMe’s or WishLists if they are yours and I’m able to review them first.

https://linktr.ee/Invisibleillnessalberta

Link is always in my bio. But I’ll add it to stories too.

It seems my life has been a lot of making Christmas trees out of IV poles lately. It’s been really difficult; really dif...
10/04/2026

It seems my life has been a lot of making Christmas trees out of IV poles lately. It’s been really difficult; really difficult, on me, on my husband, on my kids, on our mental health, on our finances, just in life altogether. Life still goes on when you’re sick, expensive vet bills, your stand up freezer breaks, your oven breaks, then your toaster, your coffee maker, your puppy eats your favourite shoes, your kids bike gets stolen, your windshield wipers go, the footrest on your wheelchair breaks & your last heating pad dies… all within the last three months, that’s way more than groups of 3.
Sometimes life is good, for weeks, for months and life feels normal. Then sometimes life feels really unfair, like now.
With each hospitalization we lose time, we lose stability, predictability, money, friends, support… I get it. It’s hard supporting someone with a chronic illness. But it’s really hard living with it too.
We don’t ask for community support often but sometimes we need to just to feel like we are above water for one day, one week…
When it comes to asking for support, I don’t even know what to ask for. The easiest thing was to make an Amazon Wishlist and share it here. There’s no pressure to get something off the list, sometimes just people understanding what it’s like is enough.

https://www.amazon.ca/hz/wishlist/ls/1SEEHQYW9ALZ5?ref_=wl_share

Narcolepsy… there were signs… but he actually didn’t get the HLA-typing bloodwork & sleep study until he was about 10!Fi...
10/04/2026

Narcolepsy… there were signs… but he actually didn’t get the HLA-typing bloodwork & sleep study until he was about 10!
Finding a treatment that he tolerates (had a few adverse reactions) has been a loooong journey and I don’t think we’re even quite there yet to say “it’s managed”
Thankfully the sleep clinic at the Stollery has been amazing!
Stollery Kids

Officially discharged from one of his immunologist/Respirologist/Allergy Dr. ♥️His doctor(Dr. Ramlall): “So, you’re firi...
10/04/2026

Officially discharged from one of his immunologist/Respirologist/Allergy Dr.
♥️
His doctor(Dr. Ramlall): “So, you’re firing me?” 😂 he’s been such an amazing doctor for the last ten years! (Cadence had him too)

Now he only has one Respiratologist and she’s amazing! He sees her at the Complex Asthma Clinic at the Stollery (she actually created the program) & as part of the Aerodigestive Clinic at the Stollery too. She also has EDS!
He’s still a part of both of those programs as well as the Sleep Clinic.
Stollery Kids (My 6’ tall ) 😊

Home. Doing ok, getting used to real life again. My energy and stamina are still quite low. I wasn’t getting any sleep i...
10/01/2026

Home.

Doing ok, getting used to real life again. My energy and stamina are still quite low. I wasn’t getting any sleep in the hospital, up multiple times a night, either insomnia, needing meds, needing infusions, changing my port myself at 1:30 am because it stopped working and it was my only access and there were no trained staff around. Also, needing to use my own supplies because the hospital didn’t carry basic port needles?! I just don’t think they looked hard enough.

Still struggling with high and low blood pressure, high heart rate, pneumonia and a bunch of blood clots.
I’m on high dose blood thinners still, when I’m laying down my pneumonia will make me cough until I puke.
Eating small amounts but needing tube feeds to keep my nutrition, my bloodwork is questionable at best so trying really hard not to be readmitted for dangerously low metabolics and electrolytes.

Everyone here is pretty exhausted from the past two weeks and just drained. Holden has a few respiratory appointments this week and next, Cadence is still doing weekly infusions.
It’s hard to do all the regular things plus now being the only one managing my health and staying on top of everything.
SKIP cards would still be a huge help if anyone would like to help out. ♥️

Post admission cheeseburgers! It’s tradition. I’m finally home (got home last night). I’m happy to be home but the first...
09/29/2026

Post admission cheeseburgers! It’s tradition.
I’m finally home (got home last night).
I’m happy to be home but the first week is always a shock to my system and just really hard on everyone.
My labs were mostly stable for the last 24 hours but I do need to watch them closely.
I’ve always struggled with extremely low blood pressure (90/60 as my baseline) but it was consistently high in the hospital and usually in the 150’s/100’s and was as high as 160/120! It is almost back to normal now with some meds but we can’t figure out why it is staying so high.
I’m still battling some pretty awful pneumonia but I got two different IV antibiotics while in hospital so now I just have to wait for it to clear up.
I’m still dealing with a large blood clot in my arm, almost wrist to armpit. It’s really tender. It has completely cut off all blood flow to a vein by my elbow. I also still have a clot in my jugular that needs to be monitored closely. I have a referral to the clot clinic though so I’m curious how that will go.
I’m now on blood thinners indefinitely but blood thinners don’t actually get rid of clots, it just stops them from growing and getting bigger or worse. It will take 3-6 months for my body to naturally break down the clots and my body will just absorb it as it breaks down over time.
I had a luxury suite at the Alex and that definitely made things so much easier to deal with.
Everyone is having a hard time with all the changes and lack of support we have. It’s ridiculously hard , stressful & expensive to manage things at home right now.
There were lots of terrible things that happened in the beginning of this admission including a medication mix up with another patient plus some abuse and not being able to go to hospital I’m supposed to be taken to (u of a) but they were completely bed blocked and couldn’t take me. I was at Westview for about two days and then they did get me into the Alex.
I could go on about how fncked up our healthcare system is. It is sooooo bad! This is how patients are dying in waiting rooms or before they get a chance to see a doctor. All that delay in care made my life threatening condition much worse and I’m terrified.

IVAD decided to stop working at 1 am, right in the middle of giving meds… good thing I had extra supplies from home & kn...
09/28/2026

IVAD decided to stop working at 1 am, right in the middle of giving meds… good thing I had extra supplies from home & knew how to change it, while sitting in a hospital bed.
There ended up being something wrong with the needle or extension, we couldn’t even flush it after it was out. The replacement one works perfectly fine now. I’m beyond grateful it wasn’t something wrong with the port itself.
😮‍💨

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