Trying to stay afloat 5.23.19

This is what the counter looks like right now.

This is what the counter looks like right now.

I can feel the panic rising in my chest when I think about my dad and how much he is suffering right now. I had an important doctor appointment today - which I was going to cancel so I could go to the hospital but they had a 72 hour whatever and would have charged me, this office really does charge for stuff like that - so I went. I got good information about how to get IV vitamins, which may come in handy for my dad….

I’m taking a minute to sip my broth - I can’t eat the eggs and broth too quickly or they pile up like a traffic jam inside of me - and start my IV hydration before I drive to the hospital. I’m either fighting a little cold or allergies, so I will definitely be wearing a mask and gloves at the hospital.

His oxygen drops when he walks even a little bit so I’m very concerned his muscles will atrophy even more, making him weaker than he already is. It’s hard to believe he was doing Crossfit a half year ago.

I took this photo because it exemplifies what it’s like for me to try and manage taking care of the house - my mom has been spending the night at the hospital and hasn’t been home since Tuesday - and inject the vitamins into my IV bag, and give myself all my powdered supplements. And “eat.”

I’m still such a rookie at injecting my vitamins into the IV bag - I’m worried I shot too many air bubbles into the bag. I’m banking on the pump getting rid of them as it slides through the tubing.

Will I be able to get into the car after the broth AND giving myself IV - both of which activate my GI system - I usually don’t do this before getting in a car. But I figured once I get to the hospital, he’ll have a bathroom in his room this time (at the ER, it was all the way down the hallway which wasn’t very much fun since I kept having to go that night).

The dish towels were in my parents load of laundry that I did yesterday. I’m trying my best to manage all the household tasks. I proposed having my siblings hire someone to help around the house a month or so ago.

No go.

My mom wasn’t on board which didn’t help.

So, as usual, it falls on me.

The disabled woman who is already juggling so many plates in the air.

I don’t know what else to write. I’m exhausted. I’m scared. I don’t know if he is going to make it out of this one if he can’t even walk to the bathroom without his oxygen. I’ve been begging him for weeks to get an oxygen pump for home and he said no. Weirdly, his numbers have looked ok up until now - BUT at the doctors during the day.

Then I hear him coughing at night and my mom was afraid a few nights ago that if she didn’t check on him and roll him over….well, it was a good time to take him to the hospital.

From what I know, the doctors don’t know what to do. It’s taking everything in my power to not barge in there and start being my codependent bossy self. I have to be careful of his feelings and wishes - I know he wants to stick around but he’s still into listening to his doctors, many of whom have different theories.

I’m concerned they are going to give him chemo while he is too weak and sick and….

Ok, I can’t. I can’t think about it. I have to email my doctor and let her know what the ND said. I need to make sure I’m writing down my food intake for my RD appointment next week so that we can make sure I’m getting the amount of calories.

My functional lab test from Spectracell - which evaluates CELLULAR level of micronutrients, whereas mainstream just takes it from the blood which is considered “serum” levels and not very accurate - show that I have several amino acid deficiencies, also some minerals and trace minerals are off.

Most worrisome is my omega 3, 6, and 9 are all deficient. So I need to get on top of that STAT. Omega fatty acids are SUPER important for a lot of things, one of which is inflammation but also, the brain doesn’t work right when there is deficiencies.

There’s been a fair amount of research showing that omega fatty acid supplementation can improve things like depression and other mental health issues.

But most people don’t know that! Surprise surprise. Big Pharma makes too much money dispensing pills, why would they want people to know that they could improve their mental health status with something as CRAAAZY as nutrition supplementation?

I have no idea how I have not gone completely batty with the medical system, what it’s done to my dad, to me, to so many others, and then to have [some!] able bodied people….not always believe how bad it is.

It’s blowing some minds that my dad got so sick so fast. I keep trying to warn everyone! Medically fragile - it doesn’t take much to send us in a downward spiral. Sometimes I think I’m alive out of sheer willpower, but I also know it’s because of that nutrition background and my support network! For SURE my support network, omg, could not do it without them.

If I didn’t have a ride to my appointment today - it’s a 30 minute drive to this doctor office - I would have canceled. But when I saw that it was one of my crew driving me - a lovely woman who is so sweet - I was like ok, she already committed. I’ve got to do this. I need to get info from the doctor for MY case, then i can apply that knowledge to my dad.

So much to learn about IV nutrition, but I’m getting there. The doc today told me those little vitamin vials I’ve been so anxious to get? Are like “peeing in a lake,” the doses in them are so tiny. Figures. One other office was going to sell me 2 vials for $40!!!!!!!! I get them “for free” via Medicare now. But it doesn’t sound like fighting for them is worth it.

Always learning something new.

Ok, gotta get to the hospital before traffic gets too bad.

Much love,

Jules