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 used to be a temporary fix for people who need daily antibiotics or pregnant patients who are struggling to stay hydrated. Short-term needs. Now, they allow patients to keep them longer than a few months. I could have had another port placed in my chest - which is what they used when I had chemotherapy since PICC lines can’t tolerate the toxic chemicals that are in chemo.
But I chose to keep the PICC line in my arm after my chest port became infected because it’s easier to bathe and manage. I also felt like a sick person having a port in my chest “accessed” all of the time. “Accessed” means that there is a needle in it. With a port, you can take the needle out, take a shower, go a few days and then have the needle put back in for when it’s time fo medications.
A PICC line, however, is not removable. So I never get to sink into a bath, take a regular shower or go swimming.
This sucks but obviously, staying alive and being able to give myself IV bags is a much higher priority than taking a dip in the ocean. I LOVE LOVE LOVE swimming so this is a bummer for me. But I don’t even know when I’d get to go swimming anyway. I’ve figured out ways to wrap my arm so that I can take a relatively normal shower and bath. The port was much trickier because water would splash onto my chest.
NOW, i learned the hard way that the PLACEMENT of the PICC line is hugely important. I got my first PICC after my port became infected when I was trying to help people sign up for the Affordable Care Act on the road in the fall of 2017. I’d had the port for four years which apparently is a good amount of time!
Then last year in the fall of 2018, a clot started forming in the first PICC line in my right arm. It got harder and harder for me to get a “blood return” in my line. Because Medicare sucks and wouldn’t pay for my home nurses to administer the anti-clotting medicine, I put off dealing with it because my dad was so sick and I was super stressed out.
The clot could have broken off, traveled to my heart and killed me or traveled to my brain and caused a stroke.
Medicare still wouldn’t pay for my home nurses to take care of it.
Finally, one night when I could barely get any saline through my line, I told my mom I would finally go to the ER. She’d been asking that I let her take me for awhile at that point.
The ER doc told me to ask my doctor to order a new PICC line. I told him that since I went onto Medicare, I didn’t have a primary or any other doc overseeing my case so I didn’t have anyone to call.
He was about my age and an open-minded guy, thank goodness. He said that this was a common thing for his patients on Medicare and he clearly felt bad that I was dealing with so much bullshit. He would have ordered it himself but can’t do that as an ER doc anymore apparently. He advocated for me to get into his hospital the next day and get a new PICC line. He knew it was dangerous sending me home but promised he’d help make it happen soon.
The next day, my mom and I spent all day trying to get me into a radiology appointment but they wouldn’t schedule an appointment without the “official” orders. I can’t remember now who put in the final orders!! I begged so many people, I have no clue.
It took two full days of calling around town in order to get into the radiology appointment where the ER doctor advocated for me. We are pretty sure the only reason I got into that department was because of him. (Thank you Dr. R!)
I was so grateful that I was even GETTING a PICC line - sad as that is but our culture forces poor people to be beggars in our medical system - that when the doctor came into the room and asked me where I wanted the new one placed, I stupidly said “um, I guess we can try the left arm?” and didn’t give any specific instructions.
So I wake up with a PICC line placed practically in my armpit with no slack on the line. Once it wiggles out of my skin a certain amount, it’s at risk for being in the wrong place in my chest. Since he didn’t give me any slack, I can’t adjust the bandage at all. This means the same skin gets covered every single week with the adhesive and becomes very itchy and irritated. You can see in the photo, how we gave a tiny area a little breathing room and it’s all dry and sore from being covered in glue for months and months.
The other shitty thing about this PICC line is that the bandage part keeps popping open. This isn’t quite as dangerous as when my port bandage would open up. The port is RIGHT next to the heart and has a higher infection rate. I could have died when the port started to go sepsis in fall of 2017. So much for my road tripping around trying to help people sign for the ACA! That was a miserable realization when I saw how fragile my system was after only a few days on the road! Another blog post - or ten - for that topic.
It’s sill dangerous when this one pops open too! If the line gets infected, I’ll need to straight to the ER and they’ll need to take it out and give me a new one.
Now, I’m hearing that giving TPN nutrients in my PICC line will blow it out faster, but for now, I’d rather not have to get a new line. It’s a royal pain the ass dealing with the medical system and all their dumb-fuckery.
But damn, I hate the placement of this line SO MUCH. Not only is the skin sore, when I’m giving myself fluids, if I bend my left arm AT ALL, my little machine starts to beep. Super irritating. It may not SOUND that annoying but when you’re dealing with this EVERY day, please believe me. It’s SUPER fucking annoying.
However, the beeping is not dangerous. The bandage popping open IS. When I was getting ready for the ballet, I looked down and saw that my bandage was totally open right near the site!! The site is under that little round thing (called a guardiva) with the writing.
Thankfully, I have the drill down. My nurses remind me that I MUST call things in even if they don’t plan on sending out a nurse. After taping the shit out of my arm - which adds all kinds of adhesive to even MORE sections of my poor skin - I got int the car and called the infusion center.
Because I’ve gone through this a few times now, I don’t get super freaked out. But it does add another layer of stress to an evening like Thursday where I’m trying to manage a lot of possible problems and variables that could go wrong while attending an event.
Thankfully, I get my bandage changed every Friday and my skin didn’t look red or have any other indicators of infection so I felt relatively safe waiting until the next day to deal with it.
The first few times this bandage popped open were late at night and I was totally freaked out! I didn’t call the infusion center because I didn’t want to wake the nurses. They gave me an earful after that and insisted that I call if this happened again. They remind me that they are on CALL and that’s their job to pick up the phone.
What a lot of able-bodied people who have led relatively healthy lives may not know is that when you’re chronically ill / disabled, you HAVE to get really smart and aware about all of your medical issues. It is often up to us to decide if we need to go into the ER or if it can wait the weekend. We have to understand what an infection looks like and plan on advocating for ourselves if there is pushback from the medical world.
We have to become pretty fucking smart medical experts - at least about our cases and possible issues. I’ve never met anyone chronically ill or disabled that isn’t SUPER smart about all this shit.
When my port got infected, it hurt really bad, it was red, raised and tender. I went into a chemo center of a hospital system that I no longer trust and showed it to TWO nurses and an nurse practitioner. THEY ALL TOLD ME IT WAS FINE.
I KNEW it wasn’t fine. My mom knew it wasn’t fine. The reason we’ve all managed to keep ourselves alive for so many years is because we know what’s what.
I sent a PHOTO to my home nurse who I DID trust and he was like: dude that’s infected. I said: I KNOW. Can i survive the night because I really don’t feel like going to the ER tonight. Mornings are always calmer at the ER. He said yes, just go first thing.
We have the whole routine down. My mom packed her food, I get my insurance card and ID together. Never bring a full purse to the ER, FYI! Just your ID and insurance card, phone and phone charger - that’s it. Things get lost!
This is why it’s baffling when people don’t believe when I explain something about the medical system. We are FORCED to become experts on our own medical issues, how the system works, how to advocate, what to recognize is dangerous, when it can wait, and how serious each issue is.
Without that knowledge, we are dead. Literally. Dead.
Why would an able-bodied person without a medical background know more about this than me?
Anyway, the ballet was wonderful as I mentioned. My nurse changed my bandage the next day and the site looked fine when we were able to take a good look at it. Thank goodness for the hearty PICC line sites versus the much more sensitive port sites! I think I even got some water in there.
That’s what happened when my port became infected on the road in 2017. They tested the bacteria and it was water based.
I’ve been in bed all day. It’s a beautiful spring day. I hope that people that are able-bodied realize how fortunate they are to be able to enjoy a day like this outside. I could go for a walk, I suppose. This is the time of year that’s best for me - when it’s not too hot and not too cold and rainy for a walk. Oh, what I would give to go on a walk in the woods! Sounds so dreamy. I have to parse that energy out over the span of a week if I want to do an activity like that soon though. I would LOVE to get to the tulip fields but it sounds daunting. Maybe I’ll be alive next year and I can go then!
For now, I have to make up for the fact that I had such a busy week and REST. I’m debating whether I’ll eat any eggs today or not. I want to eat them. But can my system handle it?
These daily decisions take up so much of my brain space! That’s why it’s such a relief to write here. I can get some of the thoughts swirling around my brain OUT and “on paper” which eases my mind.
Maybe 2 eggs? Hmm….we shall see. Writing in here makes me sleepy. I guess that’s good. It means I find it relaxing.
I wish I could have appreciated what I had when I had it. Oh man, I wish I could even get a few days in my old body. I would stuff myself with so much good food.
Why is that? Why do we have to lose something before we truly appreciate what we have?
Silly humans. We need so much to happen in order to really grow and change.
For now, I continue resting.