Month: May 2019

Pee Brain

tragerstreit4 Comments

When will I stop writing about urine, I hear you ask.

NOT FUCKING TODAY, FRIENDS.

Strap on your diapers, because I am not done yet. BUT MAYBE SOON!! For today I’ma tell you how my urology appointment went.

The short answer is: disasterously, and then really well. The longer answer is: I fucked up and thought my appointment was at 10:30, not 10, and so I missed it like an idiot. I made another appointment for their next free spot, June 4th. Meh. Luckily, someone ELSE fucked up THEIR appointment and missed it, so they called me as I was wheeling myself back to my van and they were able to see me after all.

Two wrongs do, in FACT, make a right.

Sooooo I wheeled myself back to their clinic, we filled in my new patient paperwork even though I am not a new patient, and after all the stress of the morning, J and I got a bit testy with it. “Please list all of your medications” it said. “Go fuck yourselves, you already have this information like eleven times and I am NOT WRITING OUT ALL THIRTEEN MEDICATIONS AND VITAMINS I TAKE,” I thought, and J angrily wrote in “see your records”. I felt guilty for like…a microsecond, because they were being nice and seeing me after I fucked up but HOLY SHIT SERIOUSLY YOU GUYS ALREADY HAVE THIS INFO AND MY HANDS DO NOT WORK SO I WILL NOT BE WRITING YOU A LIST. AGAIN.

We were called back to the room. I was cheerfully asked if I could provide a urine sample. I thought, but did NOT say, that they were welcome to wring out my diaper for some if they want it that badly. Out loud I said that would be very hard, can we skip it. She cheerfully said it was no problem, ushered us to our room, and then came back with an ultrasound machine to see how much urine I had in my bladder. Luckily I was able to lean back my wheelchair so she could turn down the waistband of my skirt to get goop all over me, swipe a wand across my belly, and announce I have 208.

208 what, was never explained.

She disappeared and the urologist came in. I am getting of an age, finally, when sometimes my doctors are younger than I am, but my first thought was “what is she, TWELVE??” so I had to quiet my internal grandma. In order to address my outer grandma problems. She recapped my problems in a nutshell, from my records, to see if she understood properly. She pulled a list of my meds from her chart folder to confirm them with me.

I FUCKING TOLD YOU SO.

She asked how often I get up to go to the bathroom. 3 or 4 times a day, I told her, but it’s closer to say anymore that I go to the bathroom, then get up. Or get up as I am going. Depends on the day. Depends on my body. Depends, literally, are on my body. I would like that no longer to be necessary. She told me that 4 times a day isn’t enough, I really should be going every 3 or 4 hours.

My heart sank. PLEASE PLEASE PLEASE DO NOT SUGGEST KEGELS AND REGULAR BATHROOM BREAKS. PLEASE. PLEASE KNOW WHAT ALS IS. I CAME TO YOU BECAUSE THE OTHER ONE DIDN’T.

“That said,” she told me, her manner becoming instantly less dismissive, “that isn’t very useful to you. You can’t spend half your day and all of your energy just peeing. Not to mention the dramatic increase in fall risk, from transferring in and out of your chair all day.”

Friends.

Friends?

FRIENDS.

The heavens split asunder and choirs of angels with pom poms appeared in the sky and the stars spelled out SHE FUCKING GETS IT. I remembered to breathe.

“Let’s talk options,” she said, and she told me everything I’d already researched myself. We agreed the superpubic catheter was a great option for me, she told me the risks and rewards. It’s a procedure done under sedation, she said, but she’s done emergency ones at bedside with just a local; it’s really simple. I did not tell her I had watched a video of one being done bedside. She said her people would call me to schedule the procedure, and to expect to have it done within the month.

Just like that, five minutes. All agreed and going. They called me the next day. My procedure is on the 4th, the day my rescheduled appointment was supposed to be. Within 2 weeks, I will be on my way to diaper independence. I have so many pairs of cute underwear I can not wait to be able to wear again. I can wear my awesome leggings again without having to worry about peeing them if I can’t peel them off fast enough. I will be done sitting in my own urine because I could not get out of bed fast enough and wondering if I have the energy to get up and do something about it or not.

Most importantly?

I will be done telling complete strangers on the internet all about my incontinence.

And now you’re as excited about this as I am.

Scars

tragerstreit3 Comments

ALS is whittling my body, and marking it as it goes.  Most of the changes to my body are slow, gradual shifts that are only noticed once the damage has gone pretty far.  Holy shit, I’ll realize one day, the palm of my hand is concave at the base of my thumb.  Huh.  My calf just tapers from my knee to ankle, instead of the graceful curve it used to have.  A slow, glacial injury without drama, but still with much import.

Some of the marks ALS has left on me were more sudden; sharp, violent signs of change.  I’m no stranger to scars – I used to self-harm as a teen, into my twenties, and what is a tattoo after all but a pattern of scars filled with ink?  Each of these little marks my disease has left me tells a little piece of my story – a concession, a loss, a search for an answer.

The first scar is the first nail in my coffin.  One and a half inches, on the outside of my left thigh.  A thin, straight line of white against pale skin, flesh tone once described as “ghost-ass white”.  I’m regaining sensation there, but for a long time it was a patch of numb skin.  I got this scar from the biopsy that sealed my diagnosis.  A little chunk of flesh taken to examine for nerve degeneration, degeneration that was confirmed and my fate thus sealed.

The second scar was First Blood. An L shaped mark behind my right side, under my rib cage. I took a fall getting out of a car, catching my flesh on the corner of the door as I went down. My first disease related injury, and sadly not the last – but so far the only one to leave a mark on the map of my body.

The third scar is two-part. A dash and a dot. The scars of my port surgery. A dot over the right artery in my neck, where a line was fished through, snaked into my system of valves and tubes and blood, and connected to a bubble of plastic that rests under the second scar. A one inch line cut and pulled apart for the port to be shoved in and connected to the plumbing. This was a violent scar but a relief to get; it’s made infusions of medicine indescribably easier. My only visible to the public scar, a surgical badge of Legitimately Sick.

The fourth scar is one of persistence. A year of puncturing the port for infusion has left a pink dot under the incision line. Scar tissue building up with each stab, eventually making the stabs less painful. A welcome scar.

I have an appointment on the 20th of May to discuss acquiring my fifth scar, the scar that will hopefully make my life oh-my-GOD so much easier. I’ll speak with a urologist actually familiar with ALS and therefore not liable to suggest that I do some motherfucking Kegels to keep from peeing myself all the time. I’ll ask for a superpubic catheter to be inserted, and hopefully get approval and a surgery date. And hopefully then I can go back to wearing clothes that I don’t have to strategize how to get out of in 30 seconds or less otherwise they get peed on. I wanna wear my shark onesie again.

I’m willing to get a scar over it.