Cyborg Status: Confirmed

So uhhh I have my port installed. It was …an adventure. Lemme tell you all about it!

When last we left our intrepid heroine, she had a really nasty reaction to the adhesives on her PICC line dressing. We moved to a different type of dressing that didn’t adhere for shit. The day I was done with the 14 day initial run, my awesome home infusion nurse came by to change the bandaging. She recommended we get the PICC pulled ASAP so I could get the dang adhesives off my skin.

It took a little convincing to get the nurse to refer me for a port; she was concerned that if I had a reaction to the adhesive as it was, having a port would be just as bad. I was concerned about not having tubes sticking out of me at all times; at least the port would give me a 2 week break every month. We eventually secured the referral, and my surgery was scheduled for 12:30 on December 27th, with a separate appointment that morning at 8:30 to get the PICC removed. When I told my home infusion nurse, she arranged to come by that evening (after her company holiday party, even!) to pull the PICC so we could get the wrappings off me and let my skin recover a bit. We love Deena, she’s rad. It was surreal to see her pull the line…it kind just kept coming out, like a magician’s scarf of surgery and horror. It was MUCH longer than I’d thought. And it was friggin’ DELIGHTFUL to have all that out/off. And the shower I was finally able to take was goddamned MAGICAL.

I received a call from St. Vincent’s hospital the next day – the surgeon I’d been scheduled with wasn’t actually going to work that week, could I go to Providence Portland instead? At 9:30am? Sure, no problem. The next day, they called again – sorry, could we make it same time, but back at St. Vincent’s after all? No problem. J worked that day, so I asked my sister-in-law-of awesomeness Jeanette to be my ride.

And then I made a terrible mistake.

OK so I’m a smart person, and with intelligence comes curiosity, and I wanted to know exactly what I was in for with this port. I watched a video of a woman demonstrrating how to access a port; no big deal, kind of persnickety with regards to keeping everything absolutely sterile, but whatevs. And thennnnnnnnnnn I watched a video of a port install surgery. OK, I am not really squicked out by surgery, and I found the whole thing fascinating until the phrase “BLUNT DISSECTION” came up, and the surgeon LITERALLY TORE A HOLE IN THE PERSON BY JAMMING HIS PINKY IN THE INCISION AND WIGGLING IT AROUND. HOLY FUCKBALLS. My brain went NOPE, FUCK THAT, FUCK THIS, AND FUCK YOU FOR SCHEDULING THIS MOTHEFUCKING MEDIEVAL-ASS SHIT. Intellectually I knew it was fine – MORE than fine, because I was gonna be hopped up on Versed and remember NONE of it and get some good drugs afterwards – but the actual crux of the mistake had been watching this video righe before bedtime, so my brain just did donuts in the parking lot for awhile.

The morning of the surgery, I got a call from the hospital – would I mind coming in early? It was 8:30 and I was scheduled to check-in at 9:30, so I was a bit confused, but I told them I’d be there as soon as I could. We parked too far away and I was a sweaty mess when we arrived at check-in, where I was told…I was scheduled at the OTHER hospital, still. I explained the conversations, they luckily sorted it out. I went upstairs, put the goofy little gown on, and waited. The nurses came in, partly to take vitals and start an IV and make sure I wasn’t pregnant, and partly to play peek-a-boo with my adorable niece. The doctor came in to introduce himself and ask if I had questions. he was delighted that I referred to the Huber needle I’d be using to access the port as “the crooked needle”. I was delighted by his use of the phrase “twilight sleep” to describe the conscious sedation I’d be under. They’d give me benadryl in my line along with the sedatives and a dose of antibiotic, he said, hopefully I’d just sleep through the whole thing.

I remember them wheeling me into the surgery, and seeing the GINORMOUS fucking monitor he’d be using to make sure he was placing the port properly, with x-ray. It was weird to see my name there. The several nurses had their A-Game banter going, and we were having a great time explaining names and tattoos to each other. One nurse thought I had an accent, and asked how long I’d been a Yankee. “My whole life?” A male nurse/technician/whathaveya scrubbed me down with a blue solution, making me the world’s least convincing Smurf. I was freaking cold, despite the warmed blanket they’d put over me. The IV nurse told me he was putting the antibiotics in my line now, and I felt the cold sting. he told me he was starting the sedative now, and then I…

I do not remember a thing after that.

I woke up with a very large image of my x-ray on the monitor, showing the line running into my artery. I was shivering. They wheeled me back to the recovery room, and I slept a bit. Jeanette had taken my niece Jewel to get some lunch or something. They brought me a turkey sandwich, which I devoured. They had put the dressing on a bit shitty; I couldn’t raise my head all the way, or turn my head much because of the way my skin was taped up. It itched a bit. I was given discharge instructions and no pain killers (“Just take some Tylenol”). My sister came back, I got dressed, she took me home, and I slept some more.

The next morning I was aware something was up. I was naughty and pulled the dressing off a bit to allow myself the ability to raise my fucking head, and where the dressing had been tugging was now an angry red wound. I was very itchy. All over my chest. Angry red hives, all over my chest, up my neck, and across my chin. Tylenol, it turned out, did not fucking suffice, so I took some of the hydrocodone I had leftover from breaking my ankle that the doctor hadn’t wanted to give me either because ibuprofin should be fine. YOU JUST TORE A HOLE IN ME BIG ENOUGH FOR A 1 INCH SQUARE MEDICAL DEVICE AND ALSO CUT MY NECK TO SHOVE WIRES INTO MY VEINS – NEWSFUCKINGFLASH TYLENOL AND IBUPROFIN ARE NOT SUFFICIENT FOR THIS. BLUNT. DISSECTION. BITCHES. I slept some more. I woke up to even angrier hives, annnnnnnnnd my eye was a swollen bag of fluid.


So uh…yeah. I was having an allergic reaction to something. It couldn’t be the dressing itself, since the hives were everywhere. It got worse and itchier over the night. I had a different IV home nurse visit that day, to change the bandage since they’d thoughtfully left a needle in the port for me to start the infusions, but I’d bled a bit so there was gauze under the dressing which needed to go. She was very concerned about the reaction, namely that it might be a reaction to the port itself. My delightful friend Lizzie was coming over that day with delicious food for me, and she kindly picked up some Benadryl on her way in. Luckily I had a doctor’s appointment already scheduled for the next day, for an unrelated issue and holy FUCK will I rant about that in a bit. I took Benadryl, ate delicious home made food, and slept a lot.

My PCP is a cool guy, and didn’t mind dealing with the reaction as well as the initial problem we were scheduled to deal with. He suggested two more antihistamines in addition to the Benadryl, and to contact the hospital if it didn’t clear up by Tuesday (Monday was New Year’s). Luckily it did, mostly. I think the problem was the smurf shit they scrubbed me down with, since the hives pretty much appeared everywhere they used it. I have no explanation for my eye becoming a blister, tho.

We’ve now completed the second round of infusions, the port works beautifully, and we pulled the needle out last night. I am once again dressing-free for two weeks. The scar is already nearly healed up, and the itching has almost entirely subsided now that I’ve got no more adhesives on me. I can feel the port under my skin, and it’s weird.

Now I am become cyborg. beep bloop bleep.

A Walking Pharmacy

I take ten pills, every day. In two weeks, it will be eleven, when the riluzole dosage increases.

An anti-depressant, twice a day. Riluzole. Two prednisone. Vitamin D because I live in Oregon and the sun is a rare thing. Iron because I’m always getting deferred from giving blood for low iron count. Vitamin C to help absorb said iron. Magnesium to help with the cramps. And an all-purpose multivitamin – dinosaur shape. Because fuck yeah, dinosaurs.

There are three other meds I take on an as-needed basis, ativan (which is new), ambien, and flexeril. The flexeril is for when the daily headaches I get become so horrible I just want to sleep. I don’t take that one much at all, mayyyyyybe once every other month. The ambien I’ve mostly been using because of the nighttime cramps I get. No more than twice a week, ever. And then there’s the occasional OTC pain killers for the daily headaches when they get obnoxious and I just want to take the edge off. Which is maybe once every other week, but I make a concerted effort to not take them if I can help it so as not to build a tolerance. If I took one for every headache, I’d fuck up my stomach and have no liver.

So many pills. All of them to deal with one specific aspect of the fuckery that is my body.

And speaking of bodily fuckery: of all of the symptoms of ALS, the cramps bother me the most, so far. It sucks having a hard time walking up stairs, sure, but when I am just trying to sleep and my ankles turn in and my calves craaaaaaaaaaaamp the fuck up, that is RAGE inducing. Sleep is my favorite thing. You do not fuck with my sleep. Sitting on my bed, reading comics with my cats, and a sudden random sneeze (I sneeze more often than anyone I know, and almost always in threes or fives) will cause my sides to cramp up like the worst runners’ stitch ever. A really good morning streeeeetchOWOWOWOW MY FUCKING BICEP WHAT THE HELL. I’ll sit cross legged on the floor and the muscle above and behind my knee suddenly tells me to fuck off and sit some other way. FOR NO REASON. I can just stand up, and then it’s fine when I sit back down. One time I was walking up the stairs and the back of my thigh gave the middle finger so hard I had to sit down on the stairs and wait for it to go away, which was a little embarrassing. Saturday, though, while dyeing my hair, my hands got in on the action and several times I had to stop what I was doing and press my wrists against the counter to try to unfuck my hands.

I’d hit up Dr. Goslin about the cramping in the same email as the anxiety concerns, but we got sidetracked and didn’t get back to addressing it. I sent her another email today. She responded very quickly, because she always does and is amazing, and reminded me that before we tried klonopin for the cramps (VERY BAD WOULD NOT RECOMMEND OMG), she’d mentioned neurontin. ‘It’s a medication used to treat seizures and it decreases the nerve irritability that is causing the cramps. Let me know if you want to try it. It is a very safe medication that is well tolerated except that it can make some people (but not all) feel tired or sleepy.’

And I am not sure I want to try it. And that uncertainty is ENTIRELY because of the ten fucking pills I already take every day. I have discovered that I have a real problem with this. And it’s entirely one of self-image and I need to get over myself. I’m worried about the drugs and supplements interacting, of course, but mostly it’s a problem of image – of seeing myself as Sick with a Capital S because only Sick people take so many damned pills every day, but I’m not really Sick, I just have a bit of a hard time walking so far. I mean, Sick comes later, right? It’s not now. I’m not geriatric, not clinging to a better life through chemistry. I don’t HAVE to take something for the cramps.

And I also don’t HAVE to take something for depression. I can sit around and mope and be unable to perform the simplest things like getting out of bed without a Herculean effort. That’s an option.

I don’t HAVE to take the prednisone. But it might be helping me keep some of my strength, which is helping it be JUST a hard time walking so far.

I don’t HAVE to take the riluzole. But it is extending the time I have, time while it is JUST a hard time walking.

I don’t HAVE to take the iron. I can keep getting deferred from donating much needed blood because my iron count is too low and wasting everyone’s time when I try to volunteer. And have blood like water.

I don’t HAVE to take the vitamin C. I can let the iron twist up my guts.

I don’t HAVE to take the magnesium, I can find out for myself how much worse the cramps are without it.

I actually don’t HAVE to take the multivitamin, I suppose. Or the vitamin D. I’m not sure those actually ARE doing anything, but they’re certainly not harming me and the least of my concerns. And the dinosaurs are tasty like candy.

I don’t HAVE to be a walking pharmacy and take eleven pills a day to maintain some semblance of normalcy. I am free to live without any of these things and deal with the effects of their absence.

But I also don’t HAVE to see it like that, and realize that I have the power to make my life easier in a very simple way, by just getting over myself and swallowing a couple of fucking pills.