The long week is over 4.12.19

This is frozen cubes of freshly squeeze juice two friends made for me! How sweet and wonderful is that? I’m nervous to try the kale and greens because there still could be some fiber in there even after going through the juicer. But I’m determined to try! I haven’t been able to eat much so until we get the IV stuff squared away, I need those nutrients!

This is frozen cubes of freshly squeeze juice two friends made for me! How sweet and wonderful is that? I’m nervous to try the kale and greens because there still could be some fiber in there even after going through the juicer. But I’m determined to try! I haven’t been able to eat much so until we get the IV stuff squared away, I need those nutrients!

I always think I won’t have much to say when I start writing. I write posts in my head when I’m laying in bed. Long, interesting ones and then when I finally get the computer out, I’m like: what?

I’m definitely feeling better mentally than I have in awhile. We got best case scenario news about my dad - though he is far from out of the woods - which is a huge relief. I can’t think straight when I’m worried about him! It’s not just my dad that I’m worried about - also, he is a main caregiver and of course, we share the Lynch so if he is struggling…I can’t help but wonder: is that my future?

It’s nerve-wracking to live with a ticking time bomb buried in my DNA. People get so excited that I’ve made it five years since surgery. But the longer I go without another cancer, the more nervous I get. When will it happen again? What will it be? Will they catch it in time?

On top of that, not being able to eat much sends me down a more urgent anxiety spiral.

People wonder all the time how I handle all of this.

The truth is: maybe I’m not! I don’t know. How does anyone handle tremendous stress?

I watched something that had a woman whose entire family was murdered in Rwanda during the massacre. She chose to forgive her family’s murderer.

These people fascinate me the most.

Sorry, but the new age gurus that have spent most of their lives studying spirituality but haven’t been through something tremendously tragic are hard for me to listen to now.

I want to hear more from the woman in Rwanda. Or the wife of the man who was murdered by a teenager, but she chose to forgive him and now they tour the country speaking out about violence.

How do THEY transcend the frustration. The anger. The pain.

That’s what I want to to know.

How does a person that’s going through so much pain manage to find peace in the midst of it?

I haven’t eaten much today. It’s getting to the point where I just don’t find it worth the pain. I want to eat! Don’t get me wrong. And full disclosure in case anyone is new to me and my medical case: I have never had an eating disorder or eating disordered behavior. I STUDIED eating disorders at one point in my nutrition career - I was hoping to teach cooking classes to recovering patients. I thought it would be empowering for them to take control back in the kitchen since so much of the illness has to do with control / feeling out of control.

It never happened, mostly because my work with kids and families took off and I didn’t have the time.

But I want to make this very clear: if I’m not eating, it’s because I can not eat.

The hunger will get to you, that’s for sure. The mental push and pull: eat something, but it will hurt! Eat ANYTHING, but how long will I have to feel pain if I ingest that tiny bit of food? How much stretching and walking will I have to do in order to digest a couple of eggs?

I don’t even like most of the food I eat now anyway which is not helping. Thankfully, I don’t mind the eggs and broth still. Thank GOODNESS.

But the sweet, cold stuff? Blech, blech blech. If I never eat a pudding or ice cream EVER again, that is TOTALLY fine with me.

What if there is some person out in the world that’s figured out how to improve a completely dysfunctional GI system?

What if?

What if there isn’t?

If I even get on TPN - which I’m finally accepting is going to have to happen, otherwise, I definitely won’t make it - will I ever get off? Will I be dependent on them forever? What if something happens to our medical system? What if I’m stuck somewhere due to climate change related weather disasters?

It’s such a terrible feeling to feel SO vulnerable in a country that has SO much. There is no reason why I should be freaking out about my medical care. Or worried that I won’t be able to get the supplies I need to keep this body going.

But I do. I worry every day. It’s like walking across a tight rope every day while the net below me keeps getting hacked into pieces. I COULD make it across ok. Or, one thing could go wrong and I could go tumbling through one of the holes in the net.

Living with this constant fear takes a toll on the mind.

Being hungry all the time takes a toll on the mind.

Having to beg and fight for my life takes a toll on the mind.

When I met this new doctor on Wednesday, I gave her my new speech: I used to be a regular person. I used to have a regular job and a regular haircut. I used to be a regular Joe Schmo.

Then something really bad happened.

And here we are.

Nobody thinks they’ll end up in this position. Nobody thinks: wow, I better plan for possibly becoming disabled at a young age and not being able to work, should get right on that!

We’ve been so spoiled in America. There isn’t enough of true “survival” happening in too many demographics for people to understand actual tragedy.

When you’re not hunting your food, or growing your food, or dealing with war and famine, or soldiers entering your house to murder your entire family, it’s hard to feel empathy for the people in Flint whose drinking water is so poisoned. Or empathy for the immigrants being treated so inhumanely.

It’s like: if people haven’t experienced any real tragedy, they struggle to connect with someone that has.

That’s not to say that there are SOME people who manage to empathize. They are truly astounding people. I admire them so much!! I don’t know how well I would have in my old life. I try to learn from these peeps as much as I can!

All right, I think it’s nap time.

Much love,

Jules