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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