I hate feeling so overwhelmed 5.11.19

I hate feeling so overwhelmed 5.11.19

I don’t feeling writing here today.

I can’t stop sleeping, which is exactly what I need. I took a full Xanax last night which I almost never do. But I’m so desperate for a long, heavy sleep, I did it. It makes me tired the whole next day which I opted for so that I’d keep myself “down” today.

I have such a hyper personality that it’s challenging for me to hold myself back. I want to do SO many things before I die! Which I think we can keep at bay for awhile longer, now that I have my calorie intake steady again and better IV nutrition on the way. And juicing! I think my system has slowly allowed me to incorporate in.

I’m still very aware that my time on Earth is likely going to be short. There’s so much I want to do! So many words that want to be said!

It’s important that I reign in my urge to get shit done while on the fluticasone drug that is a bit of an upper. It’s not in the same class of steroids as prednisone which REALLY jacks you up. I remember when my uncle was on prednisone when he was going through chemo many years ago. My aunt would find him working in the garage at all hours of the night. I don’t remember being super hyper when I was on it but I’m sure I was.

Another friend said she enjoyed

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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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I had lame doctor appointment 5.1.19

I had lame doctor appointment 5.1.19

I love when patients help other patients.

I remember going to a nutrition talk when I was around 19 years old after living with the inflammatory bowel disease for around two years. I can still see the speaker in my mind’s eye - how does long-term memory work? I’m so fascinated with neurology.

She was very young and told us to drink Ensure who had clearly sponsored the event. This must have been around 1991, before the Internet. So the room was PACKED with people with IBD and their loved ones. As people started asking questions, the rookie speaker looked visibly unprepared for the onslaught of nutrition questions.

After a few awkward minutes, other people in the room started answering each other’s questions. I was so young and the experience was so profound that it seared in my memory.

Hmmmm…it’s often the GI patients that know more than the practitioners.

Fast forward to this post I shared above. I’ve never tried having them

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I don't miss old me 4.25.19

I don't miss old me 4.25.19

I’ve eaten 5 eggs this week. Oh joy! Of course, I’ve been downing the high protein almond milk and broth and whatever else I can get down, but DANG sometimes I can’t believe how much I end up doing with so little food. The body is a truly remarkable organism.

I’m tired now but if I want to eat eggs, I’ll have to do some Movement tonight. The choice between food and rest is always a tough one. I usually choose food!

This photo is from my old life in New York City. I had a photographer friend take “professional” photos which I planned on using for my own business. Maybe I did use this photo.

I dreamed of launching my own business for my entire life. Even as a kid, there was no allure for me to do the “keeping house” bit since I was already doing that as a small kid. No thank you to cleaning and taking care of kids all day, I remember thinking around 8 years old. Thankfully, there was just enough culture changes happening around me to know that I didn’t necessarily have to DO the typical path.

In 2008, I decided to leave my sweet job running a culinary program and work for myself. I knew so many freelancers in New York City, I knew it was possible to go that route.

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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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I am scared for TPN 4.14.19

I am scared for TPN 4.14.19

I don’t take a lot of photos when the pain is really bad. I also don’t like taking a lot of photos when my weight is down. It’s sunk down several times over the last couple of years but I managed to pull it back up.

The reason I took all those professional photos last year was because I liked my weight then and worried I wouldn’t be able to keep it there.

This could change when I’m on TPN (Total parenteral nutrition “is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.” - Google)

One of my registered dietitian friends - I have a lot of them because I’ve been in the field for so many years - has been recommending TPN for a long time because it bypasses the gut and gives nutrients entirely through the IV to the blood.

It has sounded terrifying for the past year or so when she has been advocating for it. The main risk is liver toxicity from long-term use. It could mean blowing out my PICC line more often as well. I’m sure there are other risks, but I don’t do a lot of medical research on the Internet anymore.

For two reasons:

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Am I still a good friend? 4.13.19

Am I still a good friend? 4.13.19

I worry I’m not a good friend anymore. It’s something I’ve always prided myself on. Being a stalwart companion. Loyal to a fault (found out later, this is a hallmark of codependency - staying in situations that are harmful for too long but that’s not what this post is about!). I didn’t pair off, so my friendships have always meant the world to me. I ADORE MY FRIENDS. They are my family.

I want to treat them so well!

Now? I forget things. I never know how I will feel the days I’m going to hang out with friends. I try to stay on top of my correspondence but as I share more of my medical story, I’m concerned this will get more and more difficult to do. Corresponding is actually quite taxing, especially these days.. I’m trying to figure out a way to have someone help me with all that. The healthy side of me knows I could be missing important medical advice. The unhealthy codependent side of me is worried I’m upsetting people by not writing them back!

I’m under such pressure right now. I have to make the right decisions at the right time or…I won’t make it. It’s a pressure I don’t wish upon anyone (ok, ok, I WOULD wish this upon Mitch McConnell..grrrrrrrrrr, what a dream it would be to take THAT man down).

How do I juggle fighting for the IV nutrients that I desperately

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I got some baby medicine 4.9.19

I got some baby medicine 4.9.19

I wish I could convey in mere words how wonderful it is to have friends - and new peeps who become friends! - drive me to my appointments. I was very tired today and grateful for the pick-up!

AND, and and, I got to see an old friend and her new baby that is the cutest snuggle bug! I love holding babies and having them sleep on me. Like I said in a previous post, I’m totally good with how my life ended up (IN THAT AREA at least), but it’s so fun to visit with other people’s little bebes! It felt like such a treat to hold him, visit with my friend and get my IV bag.

I ended up feeling sick afterward - I think the glutathione made me woozy. I’m not feeling great today. I’ve been having a lot of pain the last few days. What’s more worrisome is that the pain is in new areas of my stomach. Usually, most of my issues are on the left side where the attachment between large and small intestine is (I have a itty bitty part of colon left). But this new pain on the right side? I don’t know. It’s definitely not good.

I’m also having pain while just sitting around. It took me a LONG time to come up with my current system of IV fluids, walking, stretching, yoga, tea and broth in order to reduce pain. The fact that there is NEW pain even when I’m doing most of my routine - I only did a little bit yesterday so that could be part of the problem for today at least - is very troubling. I’m running out of tricks.

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