I am very tired today 5.15.19

These are the little vitamin vials I can get through my infusion company. For the last year and a half, I’ve only gotten ONE of these per month. I found out from my nurses that they give these once a day in the hospital! They are essentially a daily multi-vitamin. I think I will now get three per week! This would be amazing. Fingers crossed the order goes through this week and Medicare doesn’t give me shit about it.

These are the little vitamin vials I can get through my infusion company. For the last year and a half, I’ve only gotten ONE of these per month. I found out from my nurses that they give these once a day in the hospital! They are essentially a daily multi-vitamin. I think I will now get three per week! This would be amazing. Fingers crossed the order goes through this week and Medicare doesn’t give me shit about it.

I’m going to have to invent better blog titles.

I feel like I’ve been dragged under a bus and then rolled down a long hill and then landed on concrete.

One friend was asking me to describe what the fatigue is like. The best I could come up with is that feeling you get when you know the flu is coming. Or, the feeling when the flu is gone but you still feel like you can’t do much. The second one is probably more accurate. It’s not full-on flu, it’s that heavy feeling where everything sounds hard. Basic tasks sound near impossible.

I know I’ve been ranting in here lately. I don’t want this to be all about my rants. I really would like to get to some gorgeous writing! Share some more life stories! Write some reviews on products! Organize my nutrition information!

So many thing!

Today, I will just try to get through the day. No matter how dark my curtains are, I can’t seem to sleep well in the bright mornings.

I’m trying to write coherent thoughts right now because I won’t have time later. I have to run a few errands, get an IV bag near the U village and I have a therapy appointment at 5pm. It looks like that one will likely end up being a phone call from bed. I feel like my appointments are more productive when I’m in person.

I don’t know.

The good news is that I’m planning on going out of town this weekend for a sweat lodge ceremony! No, no, I won’t sit inside too close to the fire. Fortunately, it’s going to be in the 60s and rainy. It’s also on the Oregon coast so it will be cool for that reason. If it was as hot as it was last weekend, I was going to have to bail.

For now, I’m planning on driving a few hours by myself which I’m more than a little nervous about. But my friends will be there on the other side and can help if I need it. I’m looking forward to meeting new people and getting out of town! Road trips make me so happy.

It’s just so hard for me to pack and make sure I don’t forget anything. I need my assistant to help me! It’s so sad. There are so many pieces I MUST have for my IV bags. I can’t buy most of it at the drug store. So that freaks me out.

I’m less concerned about food. I can go so long now on only teas and juices. I can always find those if something were to happen to my stash. I’ll have everything in my car. The weather will be cool.

These are the things I tell myself.

I can do this!

I’m worried that if I don’t push a little, I’ll start to be too scared to travel at all. That California trip really fucked with my head.

Do bad things happen when I travel for more than 4-5 days? Because so far, out of three long trips in the last few years, I’ve ended up in the hospital and then more recently, I was sick for two months. The more nutrients I can get in my IV bag, the less I have to be worried about eating while on the road (or at home). This should make my life a bit easier.

So far, my track record for 2-3 day trips is much better. The longer I leave my cocoon, the harder it is on my body.

I’m staying in an airbnb, not a hotel. So I’ll need to walk at night at some point if I want to consume any eggs over the weekend. That’s the other thing about traveling: I don’t eat as much as I should. This is fine for a couple of days, but obviously more problematic when it’s a longer trip. Also, if I forget some medicine at home for a couple of days, it’s not the end of the world.

Again, these are the things I’m telling myself. But I never know what’s around the corner. I can’t always anticipate how things will go.

Or what will go wrong.

I am so worried about my dad. I’m trying to not let it overtake my mind, but it’s always there. This heavy weight.

I have to remain hopeful. I have to believe that he’ll fight. He’s just so down lately. He never used to act like an old person.

Now. He is.

I can tell he’s more compassionate about my situation now. He gets how hard it is to function when so fatigued. I don’t think he ever really experienced this kind of fatigue. The immune system is working over-time trying to get rid of the cancer and it’s tough on the body.

My fatigue is obviously because of other reasons. But I can see that he gets how hard it is to get shit done when you’re not feeling like your regular self.

It’s hard because he and I are both such high energy people. You take that away and it’s like WHO AM I?

It’s taken me years to adjust to it. He’s got to adjust pretty fast to this new state.

I don’t want to push on him, but it’s really hard not to remind him to eat more. I do my part. But ya know, I’m his daughter.

For now, I’ve got a very busy day ahead of me. If I want to consumer eggs later, I will need to plan on doing my routine. Maybe I’ll just get in bed in the early evening and sleep. But then I lose my opportunity to finish packing. I need to get as much done as possible before tomorrow. I already started it, but I can’t leave the rest for tomorrow. It’s too risky.

I have my handy checklist I created with Sarah in the fall! It’s on a clip board and everything. Super dorky cruise director style. Whatever works. Wouldn’t it be cool if I could create templates for people to download. I’d love to create that.

I’d love to create lots of things. There is so much I want to do still in this life. I’m trying to adjust my time frame and which ones are actually realistic.

It’s so hard to have the Life Clock ticking, ticking, TICKING so loud. I had that biological clock ticking for my entire 30s. That wasn’t fun!

Now, I feel like there are two clocks ticking really loudly in the house. My poor mom.

Sigh. I should get up. One foot in front of the other.

That’s all any of us can do.

Much love,

Jules