Thursday, January 31, 2019

Testing, Testing, One, Two, Pee


As a professional patient, I spend a lot of time getting medical testing done; it’s part of the job. Most of the poking and prodding is OK but there is one test that makes me recoil in horror when it appears on my lab slip. It will consume my thoughts, contribute to my nightmares, and send my anxiety through the roof. It is the ultimate humiliation. It is: ‘The 24 hour urine collection.’


Why Though?
Apparently there is wisdom to be found in a whole day’s worth of pee. One such fascination is catecholamine levels. Catecholamines are hormones made by the adrenal glands, which are located on top of the kidneys. The adrenal glands send catecholamines into the blood in response to physical or emotional stress.

Unusually high levels may indicate the presence of rare adrenal tumors known as Pheochromocytoma and Paraganglioma. This is the important part for me so listen up! Because I have the genetic condition Neurofibromatosis 1(NF1) my risk for adrenal tumors is slightly higher than that of the average human. That’s why. (NF1 and pheos info)

Every Drop You Make
How does someone go about collecting a day’s worth of bodily fluids? Glad you asked! (If you really don’t want to know, stop reading now. If your morbid curiosity has gotten the best of you; please proceed.)


 First step is gathering the necessary equipment, AKA, a day-trip to the laboratory. There you will receive a flimsy plastic “hat” that fits awkwardly under your toilet seat and a specimen container. Every time you use the bathroom, pee in the hat; carefully pour contents of said hat into the obscenely narrow opening of the specimen container. Repeat this process for the next 24 hours collecting every drop. Exactly 24 hours after you began the test, top off the container with one last go. Label and return the container to the laboratory as soon as possible! Easy-peasy (pun intended, sorry.)

My First-World Problems
While a 24 hour urine collection test is not physically invasive, I find it to be a detriment to my jet setter life-style as it puts me under house arrest.


Selecting the day requires finesse. It has to be a day when I have no other obligations, when I can be home alone. The down-stairs powder room will become my command center.

I dare not chance a quick ‘pop-out’ to a store least I get stuck somewhere and can’t make it home in time! My bladder is kind of spazzy; the urge to go can hit me like a bolt out of the blue.

I get nervous thinking I’ll fill the container before time is up, run out of room, and ruin the test.

I try not to drink too much but being homebound, piddling around doing random tasks, I get bored. And one of my default responses to boredom is? You guessed it, to drink water.

Bedtime is most traumatic. I worry myself to sleep hoping I don’t wake to use the toilet and forget to go in the hat. Such an event would be catastrophic; I would have to start the test over (gasp!)

One more tidbit, the specimen container needs to be refrigerated for the duration of the test. So there’s that.

Finding Gratitude and Appreciation
When I catch myself crabbing about something, that's my signal to pause and remember, “Could be worse, and could be better. But all in all, it’s not so bad.”

It’s just one day. I can use the time for reading, writing, or cleaning a closet. I could pretend I’m a spy and spend the day shredding secret documents.

It gives my doctor another piece of information about my health, so why not? I’m grateful to have a proactive doctor who’s hip to the complications of NF1.

I’m sure the lab technicians have seen worse things; I’m forever in debt to anyone willing to be on the front-line of healthcare.

And the solution to the drinking too much scenario? Thankfully, I learned many years ago to ask the lab tech for two containers!

Saturday, November 17, 2018

Forgetting and Remembering My “Why”


Lately I’ve been feeling stressed about my writing. Maybe I don’t write often enough. Maybe I don’t share on enough platforms. Should I start tweeting? On top of this self-induced stress, I have been dealing with feelings of pressure to click, like, support, and follow other bloggers and guilt if I don’t subscribe to newsletters and join yet another chronic illness support group. I am overwhelmed by my social media life and I wonder how I let this happen.



The Origins of My Cyber-life
On-line support groups can be a bit of a blessing and a curse. When I was first diagnosed with Crohn’s I became ferociously involved in the virtual world of illness specific chatrooms. I learned plenty from my cyber friends and will always feel an abiding measure of gratitude for their willingness to share and assure me I was not alone. Oh, there were trolls back then and other nefarious types always at the ready to stir the pot but they weren’t the norm and they were quickly stifled. Fast-forward 14 years: The number of places on the internet for help and information has exploded and the dark side of it all has kept pace.

“I’m Tired, Tired of Playing the Game.” Lily Von Shtupp
Jumps to judgment seem to be more prevalent these days. When you are doing well, you want to share and you also can’t sound like a braggart (Do you even have a chronic illness; why are you here?) And when you feel abysmal and want to cry, you don’t want to come across as desperate or hopeless, even if it’s exactly how you feel (Whoa dude, you need professional help!) And heaven forbid you put it all out there only to be minimized or one-upped (That’s nothing; listen to what happened to me!)

I’ve been involved with some stellar groups where cultivating an atmosphere of practical support was their number one priority and I’ve stumbled into just as many that are exhausting. The clinging to pseudo-science “cures” (ah no, essential oils will not cure anything), relentless MLM (AKA pyramid schemes) sales pitches, and typos can be too much to tolerate.

Then there are the unfortunate souls, stuck in the past, unable to move on from old hurts despite receiving the advice and solace they seek. So while it helps to know I’m not alone in my chronic illness struggles, now that I know I’m not alone, do I really need to stay engaged with people rehashing ancient miseries or shilling for a MLM? I think not.

I’m Chronically Ill, Not a Pawn
Join one group or write one story and the rest of social media beats down your door looking for a piece of the action. My news feeds are non-stop full of ads; groups to join, pages to like, and sketchy products to buy. I receive email alerts, pings, and notifications all too often. If you like my page, I’ll like yours. Visitors to your page haven’t heard from you for a while, write a story! Others in your group are sharing, why not join in? Come see what you are missing! You have unread notifications. Ugh!

I highly doubt some poor someone has been checking my profile, searching for new content, and has sounded an alarm out of concern for my well-being. Nope! Cleverly designed algorithms prompt me to get involved and share. Website growth and strength depends on the generating of clicks. The more members they have, the more clicks they get, the more sponsors they can get, and that’s brings us to the real boss, money! Well I’ve had enough; I’ll share when I want to and with who I want to! And there it is.



I’ll Share When I Want to
As I was working through this piece, I recalled a similar grappling session from last year. I re-read that post in hopes of rediscovering my “Why.” Why did I start a blog? (the-process-is-the-goal) Re-reading my words of wisdom helped to ground me and bring everything back into focus.

I write because it helps me to sort my life.
I write because it soothes me.
I’m not creating a brand.
I’m not looking for fans.
If my words help another, I’m humbled.
It’s none of my business what others think of me.

So I will write when the mood hits me and bid a fond farewell to many of my on-line support groups and take a sabbatical from the few I will stay in. Social media will not go dark because I decided to leave a few groups, unfollow a few pages, and click a little less. I however, will shine on.
All photos from Pixabay