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 can't think straight 4.16.19

I can't think straight 4.16.19

I didn’t buy the beet infused yogurt shown in the photo. I don’t know why. It would be good to try to get the beet nutrients as well as the fat and protein in the yogurt in this body. I’ve decided, I’m going to get it next time I’m at this store.

It’s just that I have so much fear around food now! It’s so frustrating to feel this way after years of enjoying so much incredible food during my culinary career.

When I had the inflammatory bowel disease in my twenties, I also had a lot of fear around food. This is not a surprise! Pain will certainly cause aversion to foods. At this point in my life, if I even look at hot macaroni and cheese - my system has never done well with hot cheese and wheat long before the 2014 surgery - my stomach clenches.

It’s not easy for people newly diagnosed with inflammatory bowel disease to omit foods from their diet. But I always encourage them to give it a try. Often, they feel so much better off certain foods that they tell me they feel the same way when they think about eating something that causes pain. Not worth it.

There were so many things I could

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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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Something is not right 4.2.19

Something is not right 4.2.19

The pain was bad last night. I hate when the pain is bad throughout the night. I wake up a lot and don’t sleep well. I tried eating four eggs yesterday and it did NOT go well. That’s the first time I’ve tried to eat four eggs at in one day since before Feb 15 or thereabouts. That’s when I left for San Diego.

I thought since because I had an extra visceral massage on Sunday that maybe I could get away with it. Also, I was hungry! I was super hungry yesterday which is always a good sign. Today, no appetite. Don’t want to put anything in my stomach. I should have done two bags of IV fluids yesterday - that would have helped - but I ran out of tubing and had only one left. I wanted to save it for TODAY’S visceral massage with Caroline. We discovered that if I give myself a bag while she works on my belly then she’s able to move my tissue more easily and open things up.

Visceral massage, if you’re wondering, is when specially trained massage therapists move the intestines around by massaging the belly and the back. It can be very subtle work - they are trained to know how to “pull apart” the intestines that are sticking together most often due

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I got cancer screening 3.6.19

I got cancer screening 3.6.19

I can see why I need to write here every day. I have at least three blog posts from today alone. I had an ovarian cancer screening check today at UW. It was my 5 year check! Because my blood levels of CA-125 were never raised when I had cancer, there is no point in checking them.

I did realized today after meeting with the doctor that no one has been checking my blood for any sort of tumor markers or other things that could indicate cancer is growing somewhere. Geezus. Yet another thing to add to the list of things I need to keep track of. Thankfully, my doctor is amazing and SHE thought to ask the questions that are part of HER job. Instead of me feeling like I constantly have to remember so many details. For example, my doctor’s office in California - last I checked - haven’t sent my labs to my other doc in Seattle despite me asking both offices. So now I have to waste energy following up with both. That’s a drop in the bucket compared to what I have to accomplish in a day.

So you’re probably wondering how my cancer screening turned out! Or maybe you’re not? Since I never had raised CA-125, all they do is give me a pelvic exam. I got the tushie checked too today! Which isn’t always possible if I’m feeling sore. She said she was glad she can check because

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Debrief on CA trip 3.3.19

I got back from California one week ago but it feels like it’s been a month. That’s the strangest part of my current life. I realize a lot of people feel like time is moving really fast. I don’t know how it feels for everyone else, obviously. But for me, my health issues happen unexpectedly. So whatever I was doing is interrupted and I have to drop everything else, quickly pivot, and address whatever crisis has arisen. It’s super frustrating! I hate not being able to count on consistency in this life. Often, I turn around and an entire month and all of the plans I had for that month are lost in the blur of pain and crisis. All the trauma makes this especially challenging. I keep having new trauma, boom, boom, boom, over and over again.

Let’s back up and start again: I forget that ONE day, when people know about this blog, I may have readers that don’t know my story. You can read an overview of my story here to catch up.

I went to San Diego mid-February for what was supposed to be a restorative 10 day trip. I would visit my old clinic, get IV vitamin infusions since they take Medicare, talk to a couple of new doctors and meet with my old primary doctor that focuses on hormone replacement therapy. I had plans! To walk on the beach!

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