PICC line problems 11.11.19

PICC line problems 11.11.19

I don’t want to do this anymore. (I WILL. But I need to express the feelings.)

I don’t want to live in a broken body. I don’t want to be online, sorry, it’s true.

I don’t want to grieve my dad, I want him alive and carrying all his duffel bags around, taking up space in the refrigerator.

I don’t want to lay in bed in the dark, staring at the wall, wondering how my life has come to this.

I especially don’t want to have a fucking PICC line right next to my elbow crease.

What a weird, hard weekend punctuated with some good things.

My life exhausts me.

I want to wake up in 2009 and have a re-do. Decide NOT to publish my cookbook. Not to move back to NYC. I wish I took my nest egg and traveled the world when I was able bodied and could still eat regular food. Get a 9 to 5 job. I say 2009 because they think the ovarian tumors started growing around 2010, and that’s when I had the melanoma too.

Something isn’t right inside of me and they are telling me everything is fine with the PICC line. I’m like:

WHY DOES IT HURT THEN?

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Listen to this podcast! 11.9.19

Listen to this podcast! 11.9.19

[Check out my latest podcast on Why Words Matter with Sinéad Burke on Itunes and Google Play]

Something isn’t right inside me.

I don’t know what but I know that my skin doesn’t look right and I quit that antibiotic for my gut, Xifaxin a little over a week ago.

Sigh.

I fucked up getting my chest x-ray yesterday. I didn’t time the traffic right. I also think I just couldn’t bear to walk into the hospital one more time. But when I lean forward, I still feel the weird thing with my heart. It’s the strangest feeling. It literally feels like the PICC line is tickling my heart. Probably not a good thing. How many things can I handle within a few weeks?

I’m super excited to share this podcast! I’m also nervous. Sinéad has 127K followers. I feel so freaking honored that they had me interview her!! I’m such a rookie disabled person and feel like I don’t know….I feel really honored.

When we spoke about keeping some things private from the Internet, I get scared that I’m putting too much into the world about myself.

What if my mind is overwhelmed

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Oh boy PICC line DRAMA 11.7.19 [WARNING: graphic medical photo]

Oh boy PICC line DRAMA 11.7.19 [WARNING: graphic medical photo]

[Check out my latest podcast on Why Words Matter with Sinéad Burke on Itunes and Google Play]

Oh my body, oooooh my poor body, I keep saying, even out loud to myself over the last couple of days.

I’m so wrecked physically and emotionally. WHAT A WEIRD AND HARD AND EXCITING WEEK.. I started writing somewhere yesterday evening when I was loopy from drugs so I’ll take a look at that later to decide if it should see the light of day. Sometimes my drug-infused writing is kind of cool. Sometimes, it’s just bonkers.

Sadly, the meds I was on weren’t even for the PICC line change! It was because my back has been hurting for days, and I couldn’t deal with it anymore on top of all the medical procedures this week. So I relented and took a muscle relaxer last night which I rarely do.

I actually did the PICC line procedure stone cold sober, not even Tylenol in my system! Rookie mistake. I should always, always have a few options with me - which you’d think I would have remembered since I just thought that on TUESDAY - the day before this procedure.

MY BRAIN. I’m going to put some Zofran (nausea), CBD (achey-feel-like-shit), and Tylenol for my purse “kit.” A little tip for the newbies to the system! That only took me 5.5 years to figure out so I thought I’d pass that along and make it easier for others.

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Lots of news! 11.6.19

Lots of news! 11.6.19

[Check out my latest podcast on Feeling Dark on Itunes and Google Play]

I am writing this on my computer rather than my squarespace website because they’re entire system is down and my anxiety is off the charts. I must go SOMEWHERE with this feeling!

I just finished recording a podcast with Sinead Burke who is an extraordinary Irish woman who has her own podcast, and was on Seth Meyers just last night! Like WHAAAA?

We had some issues with the recording downloading (thanks Mercury Retrograde, I know some people think it’s bullshit, but I’ve had TOO many electronic and digital things go wrong over the years to totally dismiss it, once I ignored the suggestion to avoid buying electronics during Mercury Retrograde, thinking oh yeah whatever, even me, thinking that’s not true, and I bought a laptop. The thing NEVER worked properly so ever since then, I’m like oook I’ll pay attention) and I was having a serious panic attack that I lost the entire recording. 

I may have a lot of me on the Internet

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New PICC line tomorrow 11.5.19

New PICC line tomorrow 11.5.19

[Check out my latest podcast on My Almost Rape on Itunes and Google Play]

I’m not sure where to begin today.

i started another post yesterday where I ranted about how challenging it was to get my PICC line replacement scheduled. Whew!

Then I thought: why don’t I share the story from another angle? And explain what I did RIGHT so that others can learn how to navigate the medical system?

A little reframe can make all the difference.

First, I’ll explain the photo. I’m working with a physical therapist who specializes in pelvic floor issues. She also happens to be a yoga instructor and is willing to come to my house. I’m working on getting more home care. Driving to all these appointments is driving me MAD - and I mean that word in two different ways.

I hope to get this room fixed up so that I can have more practitioners work with me and maybe have events or something. My energy is so limited these days though, so we shall see. But I need people around me. The digital sphere is so important but I need to

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Not miserable today! 11.3.19 n

Not miserable today! 11.3.19 n

I said yesterday: I’m not totally miserable today. 

WAHOOO!! That’s like me jumping and down with joy, not feeling totally miserable. I’ll take it!

I think the difference: working with these female healers who are also working on my body. The combination feels very different than talk therapy - which is important too. I ended up having TWO body / acupuncture appointments this week because my visceral lady has been out of town, and so she fit me in yesterday, then I had talk therapy on Thursday. And one on one yoga this weekend. I didn’t mean to have that many appointments - it’s because I’m so out of it, I just book things and then look at my calendar later and think FUUUCK, I have too many appointments.  

But it ended up being very informative and good timing! These truly energetic healers know how to really listen and they guide me on how to manage the mental anguish. It is CRUCIAL. I feel semi-human!! I feel like I may want to stick around in this messed up body.

Quick! I should record a podcast while I can record how this feels! 

It’s not only feeling validated and heard by them, but I realized that it’s so important for both my body and mind to get integrated care and attention. I’m also learning REAL tools, yoga poses for anxiety, how to rest my parasympathetic system - my automatic nervous system is WHACKED from the surgery, and this trauma. Add in not enough calories and nutrients plus grief? Whew. Yeah, that would result in someone not wanting to say alive!

I’m trying man. I’m trying to so hard!

This was my hope, for the

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Trying to find center 11.1.19 Gut-Brain-Connection

Trying to find center 11.1.19 Gut-Brain-Connection

Wow.

Holy smokes.

I just read the pitch from someone about being on their podcast show. They’ve had two people I really admire already on their show! Eeeeeks!

Everything is still in discussion but daaaaang. A little boost doesn’t hurt even if it doesn’t pan out.

I was reading my Psychology Today magazine that I LOVE. I spent so many years reading food and nutrition publications, I love learning about mental health issues and looking at them through the lens of nutrition and what I’m going through personally.

More and more data has been showing that the brain is NOT “in charge” of everything as previously thought. The GUT has way more authority - I won’t use the word control since it’s so loaded - so if mine has been butchered, and the nerves damaged, it would make sense that my ENTIRE body and biochemistry are going to go haywire.

There is a LINK between the gut and anxiety! I’ve tried to learn more about the microbiome field - it’s the study of the massive landscape of bacteria in the gut and how powerful those microscopic bugs are in determining health. One quote: “We think there is a really close relationship between the microbiome, the immune system, and increased vulnerability to developing anxiety.”

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I have a ghost story 10.31.19

I have a ghost story 10.31.19

I’m trying not to wig out.

It’s not for anything bad FOR ONCE. It’s about work stuff. Deep breaths.

I got an email yesterday from about a very cool opportunity. I don’t want to say much else until I talk to them. But WHAAAAA?

Then today, I got an email about someone that sounds super interesting who wants to be on my podcast.

Oh shit.

Of course, I’m nervous for a lot of reasons but mostly because my energy is sooo low. i can barely get out of bed these days. I’m reminded that grief and depression definitely impact energy. I get two more iron infusions over the next few weeks and I’m praying they help. I have so many things I want to do! I have my improv class meeting here next week to prepare for our show - which I hope I can manage to do the real show in a REAL THEATER. How cool.

Why didn’t I do theater A LONG TIME ago?? So good for me and my quirky side.

I was watching a clip on Netflix of Jenny Slate’s new show. I love her.

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this is my main meal 10.30.19 e no t

this is my main meal 10.30.19 e no t

I eat the same thing very day and have for three years now. I thought I’d show a photo.

Because I’m missing several organs and have such a hard time digesting food, everything I eat has to be “moist” and a consistency like yogurt or pudding. My most “solid” foods are eggs and avocados. The avocados are fine - I can eat one right before laying flat with no problems.

But the EGGS.

If I eat ANY eggs, even just a few, then I have to do an entire movement routine where I walk on a treadmill (or outside), while giving myself IV fluids, while sipping hot, salty chicken broth, tea, and juices. Most of the liquids I drink must have a little sugar or salt so that my cells “uptake” them. A lot of people don’t realize that straight water can actually be dehydrating. It all depends on how well that system works. But adding even a little sweetener or salt does help - hence all the ridiculous electrolyte drinks on the market, most of which use shitty, processed ingredients. There are a few I don’t hate - Recharge is one brand I’ve used over the years but I find it so gross now from over-consumption that I can’t drink it anymore.

I eat vegan ice cream - since cow’s milk and me have never been super friendly - for calories. I’ve gotten sick of most of those flavors too.

Oh man! I’m messaging

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the bitch is back 10.29.19

the bitch is back 10.29.19

I’m sharing this photo because I want to explain why I’ve accidentally pumped air into my veins. Well, once I forgot to prime the tubing. So that little tubing gets “spiked” into the saline bag and then I start the machine so that there is fluid in the tubing. THEN i attach it to me so that ONLY fluid is going in me. I’ve been so tired, I’ve forgotten to “prime” the tubing and fill it with fluid.

Now, I have three of these amino acid bags that i insert vitamins and minerals - which is why it’s yellow. For some reason, my IV pump, which is pre-set for 1000ml of fluid, always ends with the above amount of fluid still in the bag. I don’t like to waste things, especially food or IV fluids with vitamins!

So, when I was super tired and should not have done it. I re-set the IV pump for 1000mi, because I don’t know how to reset it for 50ml or whatever is realistically in the IV bag. Instead, I accidentally pumped air into my body for…well, I’m embarrassed to admit.

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I need another chest x-ray 10.28.19 [warning: suicide discussed]

I need another chest x-ray 10.28.19 [warning: suicide discussed]

I got a call from the doctor’s office this morning. Me spitting out my mouth guard while I groggily grabbing the phone. She asked how I was doing this morning.

I have no idea how I responded. Probably like a regular human.

I felt like my head was popping off my body again last night. I see where the phrase “lost my head” comes from now.

I already have an MRI this week at the same hospital I have to go back to for an x-ray. And another iron infusion there next week.

Have I ever mentioned how much I hate hospitals? Like really, really despise them. When I was in grad school studying nutrition, people would ask me what I wanted to do with my degree. I was in my mid-twenties, finally doing better with the inflammatory bowel disease I’d had since 17 years old, brimming with optimism. I’d gotten myself through some shitty times - pun intended why not - and was ready for a fresh chapter.

I’d say:

I think I want to teach, maybe write about food. I just know I don’t want to work in a hospital!

At the time, there weren’t a lot of other options for nutritionists so people would look at me oddly. This is around 1996/1997 way before food blogging, even before nutrition was “cool.” It’s hard to imagine these days but it was considered very strange and fringe-y then.

What else could I possibly do with the degree? I could see their puzzled faces.

What indeed.

Thankfully, I discovered how much I loved teaching people how to cook while I was in school and that was that.

Have I mentioned how much

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My dad died 7.9.19

My dad died 7.9.19

I’m forcing myself to write here again.

I gave myself 2 weeks off from writing. I told myself that early on - that number popped into my head for some reason.

I needed all this time.

It’s so layered, the grief. I live with him. We have the same genetic condition. We look so alike. See, still talking in present tense about him. Because he’s going to breeze through the door in a second. Tuesdays were our evening where it was just me and him. My mom babysat my sister’s kids on Tuesdays.

He’d go with his running group - though they’ve been walking more the past year or so since one or more people had an injury, or in my dad’s case Stage IV cancer.

That’s right. He walked every single Tuesday until before that awful week where his lungs basically stopped working. I started to give him a hard time about it.

Then I stopped. Those Tuesday evenings were so important to him. If they made it all go faster, and he was ok with that, then who am I to suggest he ease up.

It just all happened so fast.

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