I can’t believe it’s been two years on TPN and I’m so thankful for the life I’ve been able to have because of it. I wanted to write this article as a mile marker for where I’m at currently and how much I’ve learned already.

 

A recap for folks who aren’t in the know- TPN saved my life and is quite literally the only thing keeping me alive today. I celebrate 2 year anniversary of the date I received it since I am so thankful for how it’s helped me! (If you’d like to read about my 1st year anniversary click here).

GENERAL

Overall, I’m doing pretty good; I say that with a huge asterisk because my version of “normal” and “good” is probably pretty skewed from the average person, but I’m content with where I’m at. One of the biggest things I’ve learned is that it’s a continual journey of compromising with my body. Before getting sick I thought I had a lot more control over my body instead of what I actually do. I learned it is its own entity and I have to try and compromise so we both get what we want out of a day (sometimes I’m not so great at this….).

SPATIAL AWARENESS

The KEY thing that took me the longest to learn was spatial awareness with the backpack and tubing. It took me a little over a year to get the hang of it, but I had no idea that this would be one of the toughest things to grasp.

 

I like to use a car analogy to explain what this is like; when you get a new car, you have to understand how much space you take up on the road, how narrow or wide you have to take your turns, if you’d be able to fit into a parking spot or not.

 

The reason it took so long is because your body and mind don’t expect you to be wearing a bag 24/7 for years, so it takes time to train yourself to take turns wider and to watch out for door handles, edges of shelving, knobs on drawers (to name a few) to not get tubing caught on.

 

I would say I’m a pro at this point and we’re totally just going to ignore that every time I kneel down or crouch, I get the tubing caught on the cuff of my pants…😉

ADVOCATING FOR MY NEEDS

I’m still working on this skill, but I can see how much I’ve improved since this all started. I am able to advocate for myself at the doctor’s office (as seen by previous articles such as “Victory!! On The Same Page!”) and at school.

 

I’ve particularly begun advocating for myself in a theatre setting since it felt so weird to do initially. I even came up with this speech that I say during introductions (for shows I spend more time with) to help break the ice and make myself feel less embarrassed and uncomfortable.

I state:

“[Introduction before] also, I just want to make everyone aware that this is a medical bag and to be aware of the tubing coming out of it for trip hazard.

Additionally, the bag has a pump that may alarm. If it alarms, don’t be alarmed, I am not in any danger.”

 

I began saying this after having multiple instances where my tubing was almost tripped on because people didn’t realize it was a medical bag (even in class sometimes, if I head to the bathroom, people think I’m making a statement because I have to take my whole bag with me 😉).

 

I started saying the pump notice because I’ve had the alarm go off in rehearsals before and people have panicked, and I wanted to melt into the floor into an invisible pile of goo. Just by saying this, it relieves my internal embarrassment so I don’t mind later if people panic because I’ve already mentioned it’s something that may happen.

 

TPN CHANGE TIMES

I have gotten the changeovers down so well-it’s muscle memory. Changeovers are when my current TPN bag ends it’s infusion and I have to changeover  to a new bag. This year I got a lot of experience with shifting my change time both for rehearsals and for travel.

The rehearsal shift was a bit tough because I went from evening changeovers to 9am changeovers. The key thing is you can’t shift one day to the next; it’s a month or more in advance calculation with my pharmacy and medical team in order to keep the changeovers at that time for the period I’m rehearsing and performing for (usually 2-3 weeks). It is worth it to shift to not have to carry 20+ pounds during tech and performances but it does absolutely suck to wake up at 8:35am every single day (even weekends).

Changeovers generally, I feel pretty neutral about on most days. I’m usually watching something on my laptop or phone, so I have it in the background while I change out. Some days however, it SUCKS and I’m either napping, sick, or just don’t feel like it but when that 6:15 alarm goes off, I have to and must get up and changeover.

 

My “bonus days” as I call them, is when my weekly nurse comes by and heparinizes my lumens for me, making it a shorter changeover that day. My alarm will go off, but I have the joy of waiting until 6:20 to change out.

 

LEARNING STILL

Something that I keep trying to remind myself through all of this is that I’m still learning and there’s so much I just haven’t encountered yet and don’t have an answer to.

 

This year one of my goals was to figure out how to go to restaurants with people given that I’m not able to eat anything (and how to get the waiter to understand that). I created what I call “restaurant cards” which I’ll include a photo of below. It’s worked out super great and I’ve gone out with family and friends a lot this summer.

*I will be writing a future article all about these cards and PDFs will be available to print your own.

 

This year I learned how to change my own dressing which I am SO PROUD OF because that was something I didn’t think I’d be able to pick up how to do right now.

 

I also found myself in a unique scenario this past semester with a class that required me to move in certain ways. I had to do a lot of creative problem solving on the spot to figure out how I’d do the movement with the backpack. Even in tech rehearsal situations I had a lot of trial and error just trying to figure out how to sit at the table (so much bag tube length problem solving and geometrics).

 

GIVING MYSELF GRACE

A continual goal for myself is to continue to give myself grace for all of the funky things that come with being chronically ill and having a central line.

 

I have moments that are “off” from my usual changeovers like my glove touched the line or something happens that makes me nervous, and I immediately think to myself, “if I get a line infection later, this was the moment,”. It’s not the kindest thing to be thinking but it honestly does happen sometimes when the nerves get the best of me.

 

Stamina and metabolism issues are a continual never-ending struggle that can sometimes make me very frustrated because it’s so challenging. Since getting my nutrition across 24 hours, I’m getting about a calorie per minute (*I also have an article coming out about this with calculations). If I take a ‘rest day’ my body kind of throws all my progress out the window and doesn’t store calories the same as when I’m doing lots of stuff in a day (like going to school).  To ‘ramp it up’ to where I was, it is a super tedious, uncomfortable, and exhausting process.

 

Lastly, I’ve been working on giving myself grace by acknowledging for myself that I am still sick. Things can become so “normal” that I forget that I’m immunocompromised and have chronic illnesses. At the end of last semester (I’m always masked in public) I got sick from someone and ended up having it last 12 weeks and got hospitalized for it this summer. -And yes, that’s what I have been up to; so much for a ‘rest summer’ 😉.

 

SOCIETY’S PERCEPTIONS

*This is on the basis of my personal experience and not meant to be representative of ‘society’ as a whole.

I’ve gotten much more used to people staring at the tube which was something that made me really self-conscious initially. There are still days where I’m not feeling like being stared at but generally, I’ve become pretty neutral regarding this (and I hope to normalize it so other people don’t have to deal with stares if they’ve seen me before).

 

I also am still working out how to not freak people out - generally speaking 😉; a lot of times a comment will be made or something regarding food or eating, or even offers of food, and sometimes I just don’t have the heart to tell someone I can’t eat so I’ll just smile and say no thank you.

 

Sometimes I might get a question about the tube or my health (which I’m always happy to chat about but I get people being reserved about it) and I’ve learned I can’t exactly answer honestly because it freaks people out. Now, I give a preface by asking if they genuinely want the answer, or if they want the family-friendly version. It’s not that I’m saying anything inappropriate or gross - people just get uncomfortable about TPN being the only thing keeping me alive and how weird my situation is.

 

I’m trying to find the middle ground between being honest and not freaking out someone- I’ll let you know how that develops…

 

Thank you for taking the time to read about my milestones and how far I’ve come in two years!!

 

Keep an eye out for upcoming posts and I will catch up on the blog to bring us to present day- there’s just been so much going on!! 😉