I'm doing dangerous things (not on purpose) 5.27.19

I'm doing dangerous things (not on purpose) 5.27.19

I’m under a little stress over here.

Just a teeny weeny bit.

I don’t know how to describe it so I’ll share a story instead.

After coming home from the hospital and a brief respite with M where we tried to find me a restaurant that would give me JUST broth. The first place, they were total dicks about it. I try to be very patient and make it clear that I’m not asking because I’m on some trendy diet. I very carefully say: I actually lost organs to cancer so I can’t risk getting food stuck in there and need just plain broth.

No go. The (young male) server then added insult to injury and said: my friend had cancer and can still eat regular food.

I’m sure you can imagine how I felt after hearing THAT. I said a little bit testier: I’m sorry to hear about your friend but situation is completely different. I had 3 at once and lost several organs.

You’ll think I’m making this up but Megan will confirm his response: why are you comparing yourself to my friend? You shouldn’t do that.

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Edith is missing my dad 5.25.19

Edith is missing my dad 5.25.19

Let me tell you about Edith.

I got this plant at a nursery when I was 20 years old. I was trying to have a “grown up” home (hahahahahaaaaa whatever that means!). I’ve always been drawn to plants even though I still have not fulfilled my lifelong dream of having a garden.

She stayed with me through a lot of changes in my twenties. When I decided to move to New York City, I moved her to my parents where she has stayed ever since.

My dad has a whole system for watering her. As we often do, he and I developed an unspoken agreement that he would water her and care for her when I was gone. When I’d come home to visit, I’d trim her leaves, add more soil and sometimes give her some plant food.

Our plan must have worked because she is 28 years old this year!

Ever since his health worsened, she hasn’t been looking so good. I’ve been trying to water her regularly, but her leaves keep turning brown. Last night, even though her soil was moist, her leaves were drooping and facing one direction. They were all leaning toward the kitchen and away from the window.

I think she misses my dad.

It’s been a really rough week.

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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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Do I go to Boston? 4.22.19

Do I go to Boston? 4.22.19

I wondered what I was up to a year ago and found this photo in my phone. It’s from Earth Day 2018! I can’t believe that was only one year ago.

I can’t help but wonder if I’ll be around in another year. Or, if I am, what my health will look like.

There is this low-level terror that I’ve been living with for so long - it’s hard to convey in words. I can smile and laugh, look put together, but underneath, I’m constantly on edge. As I’ve mentioned before, I have a constant monologue running in my head about my health.

Should I give myself another IV bag now? Or one later? Can I get away with eggs today? Should I email that doctor again or wait? Is the trip to Boston too much at this time? Can I make it if I’m still not on TPN at that time? Will the trip be worth it? Will it be too hot there? Should I start bringing men to my doctor appointments or will they still not listen? Should I try for Stanford hospital first since it’s nearby? Should I keep trying new GI docs here? What was that pain just now? Why can’t I get to an MD who will help me? Is this everywhere or is it especially bad here in Seattle? How sick will they let me get before intervening?

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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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