Adventures in Self-Care


Adventures in Self-Care

My partner met me as I walked in the door, shortly before noon. She wanted me to make a separate recording of a telephone message that our answering machine had picked up. The incoming message had awakened her.

She was suspicious, she said, because she had also heard voices outside the house, saying things like, "You are surrounded." She still thinks someone may be out to possess our house.

The phone message was one of our usual solicitor calls. Perky and urgent, it told us that we could win a cruise! It made me thankful for our answering machine, which we keep on all the time to screen calls.

"No big deal," I said.

My partner had awakened about 15 minutes after I had left the house. When I walked back in I held the mail I had picked up from our PO Box. As I suspected, she didn't notice the cotton ball taped to my short-sleeved arm, my souvenir from this morning's blood work.

Neither had she noticed the new mole on my face. While she was asleep this morning I called my GP's office to set up an appointment. Besides, I'm overdue for my general checkup.

"It's been over two years," the receptionist said.

Yep. There was what I affectionately refer to as Hell Year, detailed in my first blog entry here. My weight had ballooned in 2011 and the first eight months of 2012. The bags under my eyes had expanded into complete luggage sets.

The last thing I wanted was a doctor nagging me about where that was heading. Instead, I concentrated on changing my stress responses (especially now that we finally had a diagnosis for my partner, I had a better understanding of her behavior, and I found this site!). I also changed my eating and exercise habits and worked my way down to where I had been back in 2010. Better, in fact, because I'm exercising more now.

My weight reduction in 2010 had come after an earlier balloon in 2008-2009, the year preceding and the year of my partner's hysterectomy. Those had been bad years, too. That was when a friend had told me, "If you go down, you both go down."

Then there's this mole, which popped up probably a week to 10 days ago. It could be nothing. It could be something. Best to get it checked.

That my partner hasn't noticed this mole plain on my face amuses me. Decades ago, before we met, she had drawn a map of the moles on her body. For years she wanted me to do my own mole map, nagging me at regular intervals. Mind you, she hasn't updated her own map or checked it against her body. It all added up to a lot of worrying with no accompanying action other than her pestering me.

Shortly before we moved here, she fretted about a regular mole I'd had for decades. She had "just" noticed it and hounded me to get it checked. Finally I did -- and was told it was completely normal by a dermatologist who probably thought I was being a hypochondriac.

Last night my partner worried that I had a bad mole on my left ear and picked at it -- but it was only a piece of black plastic from my gradually disintegrating headphones. :-) Naturally, she had to check my right ear for the same. My right ear had no plastic on it, but she must have been looking directly at this new mole on my face -- the one that looks just this side of weird to me and that itches a little. She didn't notice a thing.

I derive a perverse pleasure from her obliviousness. Don't tell anyone. ;-) The last thing I want is to add to the worries of someone who thinks the world is already out to get us. In short, I don't need her drama, especially since I believe it stems in large part from her neurological impairment. If the mole is something, I'll break the news as best I can and do whatever needs doing. If it's nothing, I've at least had my annual checkup -- a little bit late.

When I called my GP's office this morning, the receptionist asked me, "Did you eat or drink anything today?"

"Neither," I said.

She added that I should not. As long as I could get my blood work done today, I could see my GP tomorrow. Otherwise I'd have a several-week wait.

The MD's office had opened just a few minutes earlier and my partner was asleep -- the perfect time for me to make the call. I'd have to drive into town to pick up the lab requisition. With my partner still asleep I hopped in my car and got on the road.

When I arrived at the doctor's office I was told the GP doesn't fill out lab reqs until "after lunch."

I related the phone call I'd had earlier and added that my local collection center closed at 2 p.m. (Yes, I could drive to the hospital a few miles farther on and have blood work done there, but it would be a longer wait, now that we were in daylight hours. And more exposure to germs, versus our quiet little collection center.)

I got my req in a few minutes. :-) One person was ahead of me at the local collection center. I made sure to tell the phlebotomist that she did a beautiful job. My veins can be persnickety, but she had me done in a flash and I hardly felt a thing.

As I said, my partner's main concern when I got home had to do with the mystery phone message (she didn't want to play it back before I got home, in case it was a threat) and the "You are surrounded" voices outside. Even if that's what the voices said, my guess is that they were kids playing, but I hadn't been there to hear anything.

Another reason I've held off on getting checked -- and this is something I'll have to deal with tomorrow -- is that all else being equal, I should have a colonoscopy done. Every time I've had my checkup, my GP has reminded me of that.

The thing is, all else is not equal.

First, my intestines had been ruptured from a car accident when I was a child. The left side of my torso had a big chunk taken out of it. The procedure for me would not be another scope in the park, given that there may be adhesions and the like. Normally, that wouldn't stop me from having the procedure done, but "normal" is not where I live.

Second, a colonoscopy is an invasive procedure, and if complications that incapacitate me arise from the procedure I have no backup. I've done what I could to prepare for that -- as I mentioned on our #carechat last night, I have a company lined up to pay our bills if I'm unable to. A friend now holds my POA, since I can no longer rely on my partner to make those kinds of decisions. (Switching that over just about broke my heart.)

There's no one else to physically step in and care for my partner if I can't (also, physically she is quite functional). And, frankly, my partner's reasoning is such that I'd be afraid to rely on her to care for me. In past years I've consulted with social workers (including through my GP), the sheriff's office, and my lawyer. Except for being referred to the county mental health clinic (from which we have both been maxed out) and my partner being referred to our local ICCD Clubhouse (to which she doesn't want to and can't be forced to go), we were basically told, "You're on your own." I assume that in a pinch, I'd have to hire a private healthcare professional. (Time to do my homework.)

Third, colon abnormalities do not run in my family, and even before my changes in diet and exercise I was doing most of the right things. Genetically I'm at a lower risk for colorectal cancer than other people in my ethnic group.

But it's that second point that's the real stickler for me. I've been through other and more invasive tests in my life -- that's not the issue. Ick factor -- I've been there. It's-gonna-hurt factor -- I've been there, done that. The issue is that I don't want to risk iatrogenic (doctor-caused) damage to me from a test if my overall risk of what the test is for is low, given my situation with my partner. If I had physical backup, that would be one thing. But I don't.

I also made an appointment -- also overdue -- for early next month, to get tested for glaucoma. And while I'm at it, to get screened for age-related macular degeneration. My eyes feel fine, but I recently learned that I'm at an increased genetic risk for both.

My partner's been nagging me that I'm overdue for the glaucoma test. Once I learned of my genetic risk I figured what the hey.

I forget where and when I first heard of 23andMe, which does personal genetic sequencing. I was intrigued, but they were pricey. Then they got a grant, dropped their price to $99, and I jumped in -- after reading various privacy and other statements, articles, and reviews. This article gives a pretty good overview.

My DNA sample kit when it arrived last month.

Since I fly solo as a caregiver, I wanted to know if I should be on the lookout for anything. The results themselves are probabilities (correlation versus causality is a whole other topic) -- some gene expression studies are more robust than others and the site makes a distinction between the influence of genes and that of environment, and also how the two interplay. (I'm at a typical or decreased risk for the various skin cancers, but I've lived in Florida for ten years. Environment plays a greater role than heritability here.)

My partner is happy I'm getting the glaucoma and macular degeneration tests. :-) As I was writing this entry, she came in to tell me that the company that sent us the "wrong" Comet (see this entry) was waiting to see how soon she would respond, because they equated cleaning the toilet to cleaning out one's emotions. And that they concluded from her "non-emotional" complaint that they could "just push us around."

We got on the phone to Comet, where we were told that a federal regulation now prohibits them from saying "Disinfectant" on the package. My partner wanted to know what the regulation number was, so we were put on hold to speak with a supervisor. My partner said the company "is damaging by twisting dreams and desires."

I was able to pull up a recent Material Safety Data Sheet (MSDS) as we spoke with the supervisor. (An MSDS gives a detailed report on product ingredients.) Following her rant and my unsuccessful attempts to mitigate it, my partner at least told the supervisor that she wasn't angry at her.

I have a great appreciation for customer service representatives. :-)

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Ah, EJ, your compliment to the phlebotomist says it all. You, too, do a beautiful job. :)


Thanks, S=S! I actually can't make comparisons -- we all deal with our unique situations (but with much common ground). I've been learning from everyone else's strength, including yours! :-) (((Hugs)))


Thanks, Bob! I used to feel I was being downright negligent if I couldn't somehow exercise control over -- for lack of a better term -- What Was Happening. I was like Chicken Little, only instead of running around screaming, \"The sky is falling! The sky is falliing!\" I was running around asking, \"What am I missing? What am I missing?\" Because with all the crap that was happening, I must have been missing something that could otherwise be used to fix it, right? <i>Wrong!</i> :-) Once I finally caught onto that, I was able to switch gears and take the pressure off myself. I also had to see past a lot of \"shoulds,\" both assumed by me and imposed from without. For one who's been capital-R Responsible for so long, easing up felt very, very strange -- but I <i>think</i> I've been getting used to it. :-)


Quite an adventure EJ. With all that is going on, it is inspiring to me that you can maintain a sense of humor and have an incredible capacity, in my eyes to be able to go with the flow with such equanimity. I need to work or maybe not work so hard at the above-mentioned qualities.