Archive for the ‘Chronic’ Category

Miss Manners for the 21st

Sunday, October 15th, 2017

Looking up a matter of etiquette for the 21st century (namely, how does one formally address a married lesbian couple) I googled Miss Manners. I found her web page and her column, then her Twitter account.

She does tweet regularly, but alas, she has only 70 followers, of which I am the latest. Speaks volumes about our times, doesn’t it?

 

Approaching seven

Sunday, June 23rd, 2013

IMG_1648 I live it still 2

After a while, survival is just another habit.

I haven’t been keeping this blog up for a while, at least for the purpose I originally created it.

I have a rainbow of reasons why: not wanting to bore my few readers with constant whines about my annoyingly dramatic health, a deep dislike of hypochondria, wanting to forget everything about the last seven years on the good days, struggling to stay intact during the bad ones with no energy left over to do anything except to fight and try to figure out what the latest complication meant.

One week and I mark my biological birthday. One month and it will be seven years since the transplant. "It is amazing – way beyond amazing – that you have survived so long!" A dear friend said to me this morning. She is a highly trained and regarded nurse; she knows of what she speaks. I know she didn’t mean the statement to be as bald as it sounded, but there it is: truth, unvarnished.

About a year ago I started a post about the shock of surviving six years. "I don’t know how to write about this," I whined then proceeded to list the complications and conditions and disasters and few triumphs since I first lamented the knife. I hated the whine so I abandoned it.

For the last year, certainly since the beginning of 2013, the problems of these seven extra years of life have started to rear up, first one after the other, now cascading, and are threatening to sideline me from the game of life, perhaps pull me from the game for good. I face this challenge weaker and wearier, and struggling to shore up my will for what is likely to be my penultimate fight for life. At least I hope it will be the second to last; we’ll see.

So I will be writing here more regularly, posting next the distressing list of things I am coping with now, and talking about the last-gasp treatments that are on their way. If you don’t hear from me for a bit, send a note to remind me of this promise.

I’m sorry, I’m not accepting any new diseases right now. You might try again next year…

Wednesday, September 5th, 2012

Six months ago, learning I had a spot of skin cancer on my arm, I freaked. More than freaked: I was absolutely outraged. How could this happen? Why me? How could this happen to me?

Never mind that I’ve been expecting skin cancer’s arrival most of my life. Whiter than white, that’s my gene pool. Skin cancer’s more common in my extended family than healthy relationships. My mom fought an ugly battle with it all the way to melanoma’s threshold. It would’ve won if ovarian cancer hadn’t gotten to her first. My sister has almost no melanin in her skin. Ever the outdoors-woman, her skin goes from white to red to white again, never getting even getting close to beige. Both of us have had solar keratoses burned off our faces and necks for years. And in case we missed the point, our grandmother’s maiden name – she was born on the West Coast of Ireland – roughly translates from the Gaelic to "the tall pasty people".

Add to the genetics the fistfuls of meds I take to keep my borrowed liver from rejecting, each with a Day-Glo warning label screaming, “stay out of the sun!” plus regular reminders from the dermatologists that it’s when I get skin cancer not if, and a spot of basal cell carcinoma should come as no surprise to me at all.

It didn’t. Except it did.

How could I have a new disease? I moaned. Wasn’t liver cancer, a transplant, a weird and rare hepatitis outbreak, two hernia operations, the unexpected arrival of two autoimmune diseases –  another gift from the family genes – wasn’t that enough?

Yes yes. Stupid question. But for two days stupid questions were the only ones I could ask, intelligent ones being drowned out by  the moans and whines of “oh poor me, oh poor Eddie”.

A week later, back to my normal self (and what the hell might that be?) I returned to the dermatologist, had the half-dime-sized spot burned off my arm, hurried off to yoga, grabbed lunch, picked up Otto, and drove to McLaren Park where we went on a long walk, me taking pictures and Otto sniffing and peeing. Shock and anger and whining? Over a dot of skin cancer? Please. I’d assimilated my latest disease.

Yet the question does creep into my mind: how much is enough? How much is too much? How much can my body take? More to the point, how much can my mind?

Last week I broke two ribs. Nobody can figure out how or why. I did not fall, I had no accident, did not black out. I was shocked and it hurt like hell, but no outrage broke through, no self pity. The three weeks before that were devoted to the misery of a hideous sinus infection which scared the hell out of me when it moved into my eyes (!) puffing them out until I became a scary-movie version of the Pillsbury dough boy. Then there were miserable reactions to the antibiotic used to knock the infection out. I ended last week with an MRI of my liver, ordered by the docs to see if there’s something they can blame for rising liver enzyme counts and began this one by getting an overdue blood draw on Labor Day.

I forget how awful this all is until I see it reflected in others.

The friend who drove me to the MRI appointment – and who has ferried me about the last week because of the awesomely painful broken ribs – asked why I was having the scan. I think he assumed it was for the ribs, but you can never be sure with me. I told him about my problematic no-longer-new liver and then, in his eyes, I saw how heavy a burden all this is, how impossible it is to imagine living my life as one ailment piles on top of another over and again until there seems no human way to cope with it all. I hate seeing that look in others. I dread the times I feel the burden myself.

Poor Eddie didn’t freak out over the skin cancer. He panicked. Panicked wondering how I could possibly cope with one more problem.

I expend more energy fighting to keep my mind and emotions in some sort of balance than I do trying to keep my deteriorating body intact. I suspect this is essential, the only way I can stay alive.

Familiarity breeds… Boredom? Anxiety? Disdain? How about night terrors?

Saturday, April 16th, 2011

A shadowy figure broke into my house, into my room, into my dreams. In that way dreams have of telling us what’s going on I knew he was a burglar but he didn’t seem interested in burgling anything. All he did was cut me. Over and over he cut me: slices to my ears, stabs on my face, cuts to my arms and hands… painful small cuts, the kind that, added up to 10,000, cause death. Oh, those cuts. They hurt. I screamed.

The scream woke me up. I shuddered, shook my head at the horror of the nightmare and fell back into sleep – and  back into the dream.

The cutting man was still there. Not a gloater, he was nothing like Hollywood Evil. Just a man with a grim task to do. His knife looked like a scalpel, blood ran from my cuts. Why was he doing this? Why didn’t I fight back? If he was the thief the dream insisted he was, why didn’t he just take something and go? (more…)

I could never go through what you’re going through…”

Monday, January 10th, 2011

I’ve heard this comment from friends and family and even strangers for five years now and it always makes me uncomfortable. Something’s off with it; somehow the sentiment just doesn’t ring true.

Thanks to Thomas Mann’s The Magic Mountain – I’m carrying out my vow to re-read this magnificent and complicated book – I’m learning why the remark causes such unease. I think I understand how the words do not say what they are meant to say.

It’s meant to be a kindness, even a salute. “I don’t know how you do it! I couldn’t,” someone will say to those of us fighting chronic illness or life-or-death health battles. Our treatments, our pain, the unending doctor visits and hospitalizations – they seem unendurable, impossible to someone looking at it all from the healthy “outside”. (more…)

Chronic choices

Wednesday, December 8th, 2010

I’m hanging steady these days. No hospital overnights, few “procedures”, no new diseases to compliment the half-dozen or so I’ve already collected. People tell me I look better. Yoga has strengthened my body and, it seems, the remaining bits of my mind. Life is good, then, as good as it has been for a while.

So I’m celebrating, right? Well… yes and no. Its not just downward-facing-dog poses, attentive doctors and luck that’s improved things. I made a choice – one of those choices where, to gain one thing you must sacrifice another. I’m doing it solo because no doctor would ever agree.

I’ve been around a lot of sick people and one of the most stubborn rules of thumb I’ve observed is this: (more…)