Invisible Illness Alberta, Edmonton, AB Videos

I have been feeling pretty awful for the last week. My migraines have been so bad, way more frequent than normal & the severity of them has been so much worse too. I’ve been struggling with so much nausea… constant nausea, no appetite & a weak esophagus that also isn’t coordinating properly as a muscle has been making getting enough nutrition in & keeping meds down really difficult. The sucky part now is that if I can’t keep meds down, I have to go into hospital for IV hydrocortisone & I’m doing everything I can to avoid the hospital at all costs. I blacked out twice last night, after getting an infusion too, which isn’t typical. I’m not sure why I’m having so many syncope/pre-syncope episodes. A really uncomfortable one, is having so much trouble controlling my body temperature, especially at night. It’s the most uncomfortable feeling, it makes me want to scream at times. (Autonomic Dysfunction) I have a few appointments this week & next so hopefully I can get myself to those. I’m hoping to stay out of hospital but one more day of this & I’ll have to go in before I start slipping into adrenal crisis. 😭 Plus my back is still really sore & I have a huge numb area of my upper arm from a subcutaneous needle I got over a month ago. 🤷‍♀️ Because of all this, the mental health of our family is on thin ice. This fall has not been kind to me & I am so far behind on paperwork, grad, finances, respite, shopping, IEP’s, cleaning, appointments, forms, & friends. Everything is stressing me out. Everything. I need help.

So, you know how people try to touch their tongues to their nose? Apparently, it’s a thing for people to be able to touch their top lip to their nose. I can’t touch my tongue to my nose so I didn’t think I’d be able to do this, but it’s actually a lot easier than I thought. I had no idea I could do this until today so now you have to try it and post a video/picture too. It looks like I have no teeth 😂

Well I’ve never been locked inside a building before… until today. #lastpatientofthedayproblems

#raynaudsphenomenon Sometimes my fingers and toes turn bright white in the cold (even in the summer in AC!) but this year they have been turning bright blue instead. I was swimming with @krst01 and the kids and while we were waiting in line for the slide, one of her kids looks at my with wide eyes and says “Mom! Why are Kyrie’s hands so blue?!” I look down and my whole hand was wildly blue! #thatsraynauds #ABwx #yeg #raynauds #itsminus40today #truestory #invisibleisntakwayssoinvisible #ilovecutepuppies

@lumberjillapparel I take your shaky/flappy arm and raise you two shaky/flabby legs! ♥️ #summerbodycomplete #skinnyisntthegoal Getting out of hospital and back into shorts is… #junedresses is so hard from the hospital, they only have two gown prints and one robe print. @junedresses @outdoorkidsalberta

So the plan is: I have to stay discharged until I get a J-tube surgery but none of the hospitals have beds available for me so I have to wait and wait and wait in pain, sh*tting my pants, vomiting, taking anti-nausea meds (that don’t work) around the clock as well as anxiety meds around the clock. Because of the regular pain medication that I’m on, there’s no other medication they can give me. I’m so tired and exhausted, my brain is scrambled I’m off balance I have fluid in my inner ear as well as an inner ear infection, my doctor won’t even stay with me long enough to even do a physical or check me out it’s been a little frustrating. I really miss my doctor from last week who was really thorough. What long story short I’m stuck in the hospital until I can get a J-tube placement. I’m also seeing double so it’s really hard to type and it takes 20+ minutes to write a text message or a post because I press the wrong button for almost every single word. I try to use voice to text as much as I can but I know how much some people hate that because it doesn’t make sense a lot of the time and my throat is so bad that my voice sounds off and it doesn’t register words correctly.

Having to schedule appointments is a full time job in itself. I have to reschedule an appointment (again) about my subluxing jaw so my kids can see their cardiologist for a few tests. Both kids have dilated aortas, one ascending aorta and one aortic root. One kiddo has left axis deviation too, a common but abnormal reading on an ECG. #ehlersdanlossyndrome

What else has tons of salt?

For real people. Today is a bad one.