I got out! 3.9.19

I’m pretty happy that I made it out last night (Sat 3.9). And I look pretty healthy in this photo which makes me happy! After I got the IV bag on Thursday - and some more nutrients in my IV bag on Friday as well - my skin color went from gray to pink. I’m going to have to do those bags every week for awhile - until we can figure out how to navigate the Medicare / medical system issues. I can tell the difference when I’m doing the IV bags AND the powdered nutrition - I don’t feel as “off.” And as always, I use my skin as a barometer to my inner health.

Getting out of the house was probably not the best for the bug / cough I have going on. But these outings are SO important for my mental health. I love getting together with lovely people! It makes me so so happy, even though I’m exhausted and can’t eat! Good company is like food for my soul, almost more important than actual nutrition.

Plus, how cute is this dog? I want a dog so bad. But there is no way I can handle three pets and my older cat would…I don’t even know. He would have a mental breakdown for sure. He is so old now, can’t see as well as he used to and very dependent on me. I get nervous something is going to happen to him now. I realize that at 17 years old, he doesn’t have a lot of time left. I just pray that when it’s his time to go, I’m not a total wreck. I didn’t even intend to be a cat owner. I’m a dog person, if anything. But after 17 years together, I’ve KIND OF gotten attached.

If I make it through this hairy period, and I’m healthy enough, I would love to get a dog one day. I think it would be good for me.

I feel more nervous about my health than I ever have before - and I know that’s saying a lot. Honestly, I’ve always been a bit cocky about it because I have so many resources. I prepared for cancer for twenty years. I wrote my master’s thesis on it. I didn’t anticipate so many complications. I didn’t plan for impaired cognitive issues. I am trying to keep my email inbox manageable because if I’m not organized, I can’t manage my complicated medical case and all the damn details that go into my benefits, and doctor coordination. And manage a crew of volunteers (thank goodness I have so much experience working with volunteers!) too.

I found an email from an RD friend that had a powerpoint about SOMETHING, no idea now, my short term memory is almost non-existent - I have pieces of paper everywhere so that I can quickly write down messages to myself because I know whatever I’m thinking about will be gone POOF! if I don’t get it on paper or on my phone quickly - and I’m thinking: there is no way I can sift through scientific material anymore.

That’s terrifying for me. I’ve always had a fragile fucking immune system and GI tract, but I had my BRAIN to deal with it. I’ve been spoiled rotten by this brain, I see that now. I used to be so impatient with people who didn’t pick things up quickly. What a fool I was. Now, I’m the middle aged lady having to ask the front desk girl to repeat what she said three times. They are so patient - for the most part.

How much longer can I do this? How long can I keep this one foot in front of the other attitude? How much longer can I go without eating eggs daily? What will happen to my insides? Can I get rid of this cough if I’m not eating much? Thank goodness I found this latest doc that gave me the elemental nutrition. My friends said they’ve been encouraging me to take this but I have no memory of that. I skim read too much too fast - and I obviously didn’t want to hear about this because…well, you only go on elemental nutrition if you’re recovering from surgery or something is not right.

Just got a text from one nephew that he’s upstairs so I’m going to go visit. My folks certainly won’t bring any broth downstairs so it’s good when J comes over because I end up having some soup and visiting is good for my spirits!

Then it’s back to bed. I’m so tired of being in bed. What a fucking bore.

Much love,

Jules