Trying to focus 2.28.19

this photo perfectly illustrates my life for many hours of the week. i do what i can on my computer, but sleep a lot.

this photo perfectly illustrates my life for many hours of the week. i do what i can on my computer, but sleep a lot.

Today I felt less mentally drained and was able to be productive which always improves my mood. I HATE not being able to get shit done. It’s one of the most frustrating things about my current life. I used to work 10-12 hour days in New York, go for a run after work, then run errands on the way home! So being trapped in bed feels like torture. Thanks to technology, I can get a fair amount done even while laying flat. It can be super tiring though to make phone calls.

BUT I’m so happy that I’m slowly finding people to help out. Which is fucking amazing. I’m terrible at asking people to help me. I’m slowly improving at it! That’s progress for me!

I found a second volunteer who loves organizing so we started a spreadsheet for my “to-do” list today. This is really important as my cognitive function has not been great. I’m going to buy a paper calendar too. I used to write all my appts on a paper one when I first moved back to Seattle and was so weak and sick. I think I just need to keep that as a “must have.” Oh, the reason why I decided this a must have now. is that I got to my appt 30 minutes early today - which is fine - but a little wasteful of my time. I got to an appt in San Diego TWO hours early. Sometimes I’m so late, I miss the entire appt. Obviously I’d rather be early (something I’ve NEVER been in my whole life) but I also need to be more efficient with my time. My energy is LIMITED. Everything I do needs to be targeted toward something regarding survival. At least for now. Writing here feels super important for my mental health - which is part of my survival for sure. I don’t care if anyone reads it! Feels good to put my thoughts and feelings somewhere. I have so much to say! So many words floating around my head. It can literally make my mind feel super overwhelmed. Add in hunger and doctor frustration and I think writing is going to be medicinal moving forward.

I also spoke to a lawyer friend that has some ideas for me, though he thinks I should just go to the ER and insist they help me. That’s the third person encouraging me to do that. I get it. It’s just so inefficient! I should be able to get labs and nutrients from my home nurses. No matter what, I still will need an MD doctor to help me after the hospital! But if I get too weak, I promise I will go!! It’s frightening how well the body can function on so little food. I’ve always wondered how people in war and other situations deal with it. Well, now I get a firsthand experience! Good job, Julie, wondering about such a strange thing!

This the craziest thing I heard today though: I went to my skin cancer check (yes I did a lot today, I will be tired tomorrow but still will be making calls from bed) with my doctor I’ve been going to for…15 years maybe? It’s so interesting because the doctors that have known me for a long time - and remember WHO I was before are SO much more respectful and compassionate than the ones I’ve met since becoming disabled. The new ones are so suspicious of me (I’ve thought about bringing my resume - seriously, I have - anything to be treated like a human being). I told Dr. Thompson - a very well respected skin doctor connected to Swedish Hospital - that I was struggling to find an MD who would help me. Get this: she’s in her 60s, been fracturing bones very easily and found an IV drug that helps with osteoporosis issues. This is what her doctor said: oh no, I won’t prescribe an IV drug for you. SHE IS A DOCTOR and she’s still being told No. WTF??

As shitty as this is for my doc who I love and wish she could get all the care she deserves, it was incredibly validating to know that this is a “thing” happening in the medical system now. Some bullshit, man! But what do these docs care? If they order labs or prescription? There is something that is making them nervous. There is some reason they won’t order something. I have to figure out what it is!!!!

For now, I’m super happy to report that she didn’t find anything to biopsy. YEAH! That’s 9 years since melanoma!! Wahooo!!

I realize nobody knows I’m writing here now. But it feels good to do it anyway. Wahoo (me high-fiving myself)!

It’s for me. Doing something JUST for me is so counter to my being. I’m sure I’ve been a selfish person many, many times. But I’m sure out of a reaction of feeling resentful and not being good enough to myself. Though, that does not excuse my behavior. Just trying to take an honest look at myself.

I like writing what I want. Posting what I want. Not worrying about who will like something. What I’m supposed to do to grow an audience. Blah blah blah. When you’re not sure how long you have to live, all that shit sounds SO stupid! Believe me, when you’re researching hospice and palliative care, the last thing you’re worrying about is how many followers you have on IG!!! It’s like: life/death/followers? But man, able-bodied certainly view the world through their able-bodied lens. I get it. I did too. But I see things differently now.

I like the original reason for the blog: an online journal. A place to share thoughts with people who are interested in similar topics. Before social media was even a thing. If it’s meant to be read by certain people, it will. But even if 3 people read it, I’m cool with that. I’ve been trying SO hard to find a way to organize my info, how should I do my writing, where should I submit it. Fuck it. I’m just writing here! Autonomy is the best thing to come out of technology, for me. I like that challenge of writing here every day. It makes me feel like I’m a working stiff, instead of a sick lady. So that’s enough reason for me!!

Signing off to go eat…surprise! Chicken broth and avocado. I know so shocking, right?

Much love,
Jules