I can't wait to decorate 5.10.19

I can't wait to decorate 5.10.19

I gave myself 3 liters of fluids yesterday up until about 3/4am.

I’m giving myself one right now.

I’m dehydrating very, very quickly these days.

AND I started the fluticasone on Monday.

I’m trying not to panic. My nurses say they have patients that get 3-4 bags per day so I know you can live like that.

But what the FUUUUUUCCCCKKKKK is happening to me? Why are so many things worsening? How can I stop them from worsening better? Is it even possible to improve hydration and gut issues? Am I dreaming?

Or, do I rely on my old belief system that the body WANTS to heal, and given the right conditions and interventions, it WILL heal.

If only they hadn’t gutted me so badly. Geography and scar tissue are different beasts than inflammation or auto-immune problems. Nerve damage…

Ok, I’m not going down that road today!!

Can you feel how frenetic I was in my post yesterday? That’s partly the medication. Like I need to be jacked up at ALL. I’ve always been drawn to depressants, never stimulants. Caffeine and cocaine have never had any appeal to me.

Mellow me out, man!

(Can you tell I started my weekend already?)

OMG this week was SO bananas!

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This was not a fun day 5.8.19

This was not a fun day  5.8.19

The reason I wasn’t able to write yesterday (I posted something there just now to cover that date) is because the day was absolutely bananas. When it didn’t need to be.

I drove myself to my IV vitamin appointment which already irritates me. It’s a half hour drive there and an hour home because of traffic - now if the medical system allowed for me to get these AT HOME, it would be a lot cheaper and a LOT easier than commuting for a 45 minute IV bag I could easily administer myself.

There is magnesium in the bag which makes me a bit sleepy. I do my best to rest while I’m there so I’ll have cognitive focus to do the drive home.

Lately, I’ve been bringing chicken broth, tea with honey and nut milk, and my protein drink. The Vitamin C can lower blood sugar, so I’ve had to be very careful about maintaining a constant flow of salty or sugary fluids. I never used to get low blood sugar before all of this. I could go without meals, no problem.

Not anymore!

So at the end of my appointment, one of the ND doctors flushes my PICC line.

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Warm weather is hurting me 5.7.19

Warm weather is hurting me 5.7.19

I’m not doing so well in this warm weather. I was so wrecked yesterday from a long doctor appointment, the weather and my class, I didn’t have time to write in here!

I feel like such a Debbie Downer that I’m not thrilled about the warm weather.

Not being able to eat hardly anything as a former culinary person is one kind of hell.

Being trapped indoors on beautiful days is a whole other level of torture.

Climate change is definitely going to be tough on a lot of medically fragile and elderly. Our systems can’t always handle the heat.

I’ve been giving myself daily IV saline bags (sometimes with amino acids and vitamins) since May of 2017. I’ve noticed my need for more and more saline has gone up, slowly over the past two years.

During the winter last year, I NEVER needed more than one bag. This winter, I gave myself two bags per day quite a bit.

There is a drug

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The warm weather is tough 5.5.19

The warm weather is tough 5.5.19

I used to love Cinco de Mayo. Strangely, I can’t remember any in particular.

Actually, that’s probably not so strange.

I’m very tired today. This warm weather is already wreaking havoc on my sensitive system. FUCK!!! I didn’t have to start taking the fluticasone until end of June last year. I’m already on two liters per day now and STILL drying out like mad. The weather didn’t used to be this warm so early in May!

Fuck climate change. And fuck all the people who keep pretending it’s not real. People like me will die as the weather inches up, while far too many people keep acting like they aren’t also at risk.

It’s so strange to me when people are in denial about how a destroyed habitat will affect the animals living in that habitat.

We think we’re so smart, humans. But I think we’re the only animals that are stupid enough to destroy our own habitat, while sipping our lattes in single-use cups, and planning our 7th plane trip for the year, without considering the impact those flights have on the atmosphere.

No biggie!!!

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My PICC line is annoying 4.20.19

My PICC line is annoying 4.20.19

Some days I don’t feel like writing in here.

Today is one of them.

But I like the challenge of writing every day and I think my writing has gotten a tiny bit tighter since the first few weeks I started here. It’s been pretty bad so that’s not saying much! I need more time to edit them - but with my health the way it is, I’m not sure I have the bandwidth for a lot of necessary editing. I can’t care about that. It feels so good though to share more of my story in a place that will allow me to live on no matter what happens to me!

The other part of my story from Thursday night is that my PICC line bandage popped open right before I left for the ballet.

Since this is it’s own post, I chose not to include it in yesterday’s story.

Every day, there’s so much going on! My head is spinning. My dad is so weak right now - it’s so hard to see him like this but that again, deserves it’s own post. I’m still processing everything that is happening with him.

Back to the bandage.

A PICC line

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