Flexing My Psychological Muscles

Happy New Year

In February of 2018 I received an IV infusion of the osteoporosis medication Reclast. As the year flew by, I tried not to think much about it. I saw my doctor earlier this year and she had good news for me. The results of my latest DEXA scan showed significant improvement in my bone density. How much improvement you ask? Enough to prompt her to remove the word ‘Osteoporosis’ from my chart, that’s how much! She casually stated, “Well we don’t need this in here anymore” and with a swift click of a mouse, Osteoporosis became a memory.

Oh, and the news got better, no IV infusion this year! A medication vacation was what she called it. But there was a catch, Osteoporosis could come back. I would still need to mind my diet and exercise. I would still need to repeat all the testing next year. There was no mention of a permanent medication vacation. Of course there wasn’t.

Image: Pixabay

Is That All There Is?

My doctor had given me fantastic news and a medication vacation so why did I feel like there should have been more? Simple, I want more. I want my medical life to be easy. Actually, I want it to go away but that’ll never happen. That’s the rub with chronic illness, it’s always there. Sometimes my illnesses are loud and crazy and other times they are more of inconvenient annoyances. Regardless of my health status, I’m constantly attending to my medical life.

Currently, I’m in the inconvenient and annoying phase. I have been off my Crohn’s meds for nine months and counting. I won’t have to think about osteoporosis medication for another year. On the surface it would appear I’m doing fairly well. Maybe so, but I still have appointments to make, blood to get drawn, and pee to collect. Sometimes I wonder what I would give to hear the words, “You’re all better and free to go, you never have to come back.” Sigh.

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So What, Now What?

It’s easy to get stuck in the cognitive distortions of ‘all or nothing’ thinking. Negative thoughts are going to come and I have discovered it’s best to just let them in. Not to accept them but to challenge them! When I find myself wishing for a different life, I see it as a reminder to flex my psychological muscles and use some adaptive thinking. I pause to ask myself questions like:

Is this really true?

What is the evidence?

Is this helping me right now?

Is there another way to look at the situation?

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New View

Running around for testing and treatment is not the most glamourous use of my time but it is not the only thing I do. I’m able to work in my yard, go out with friends, and get to the gym every so often. I’m also thankful to be ambulatory enough to drive myself to my appointments as well. And while I’m not cured (and might never be); my health status has improved to a point where I’m free of all medication. If that's the pay-off for all my running, I’ll take it!

“Everything can be taken from a man but one thing… to choose one’s attitude in any given set of circumstances…” –Victor Frankl

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!