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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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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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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I got labs at home 4.5.19

I got labs at home 4.5.19

Have I mentioned yet how much my family appreciates nurses?

They are the unsung heroes of the medical world, FOR SURE. I’ve been having home nurses come to my house for almost two years now. They changed the bandage on whatever needle is in me - well, when I had a port in my chest, they had to put in a NEW needle. This is one of the reasons I prefer the PICC line - I don’t have to get poke every week. It sucks because I don’t get that ONE night where I get to sink into the bath and I never get to go swimming.

But really, these days, that feels like a small loss. And I LOVE swimming and taking lovely baths!

In the grand scheme of things, I can’t worry about that now. It’s interesting how something that sounds SO hard to lose happens, and over time, I get used to it.

I got my labs drawn by my home nurse this morning WHILE I WAS IN BED. Do you know how incredibly dreamy this is? The stress of trying to GET to my healthcare is a large portion of my stress. Driving, parking, navigating new buildings, getting lost, feeling stressed, paying for parking, forgetting where I’m driving…. So much of it makes my life hard.

That’s why having drivers lately has been absolutely fucking amazing.

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