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Can’t Stop Watching #JusJoJan

It’s the best show these days, This Is Us, dealing with everything from racism to mental health and anxiety to struggles with weight and eating disorder to alcoholism and now Alzheimer’s.

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I am not sure why I continue to pay for TV/cable. I do it, holding on to the past because streaming services and watching everything online these days means not paying for expensive cable or satellite, but I haven’t quite given in to this new way of it.

I do choose to watch a clip from The View or Seth Meyers, on their Facebook pages rather than on my TV. I don’t tune in to my
television
for much else, other than local or national news. I could get this online too. Maybe I will eventually go off TV entirely.

The best show means it is really the only good show on television, especially after Anne with an E was canceled even after being such a big hit on the CBC here in Canada. I am watching this season of This Is Us with lots of interest, since learning they’ve decided to add a character who is blind, with an actor who is blind in real life.

I watch this Tuesday night show on my local cable channel which comes along with audio description for the episodes. I can follow along and not miss as much with that narrator telling me the things I need to know, when watching a show that spans multiple generations and over decades. It’s a lot of flashback scenes and jumping from past to present to future. I like the richness of this series and I hope to write more about it in the near future.

Of course, a story with discovery of a couple having a child who is blind and the couple’s marriage won’t survive it. It makes for more drama on a television drama, I get it. This was my fear at certain times, that my own parents would be so stressed by my disability or chronic illness that they’d split up because of me.

I am watching this season of This Is Us with my mom. It’s hard to know, but seeing representation on such a big show is important, but watching this particular storyline with my mom is interesting, as I wonder how my mom and both my parents did cope with things when they learned their baby daughter was blind.

I am hoping to write more of a coherent piece on all this soon, but here, as
JustJot It January #JusJoJan
comes to an end, I am brainstorming and pondering on what this new year might look like and what I might write or have to say by the end of these twelve months through the jotting I’ve been doing all month long.

Thanks,
Barbara,
for this prompt.

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IN THE NEWS AND ON MY MIND, Kerry's Causes, Memoir and Reflections, Special Occasions, TGIF

New Month, New Me

Every so often, I feel the strong urge to do something wild or rebellious. This could mean experiencing great heights or a radical new hair style/colour.

June has begun so I figured, new month, so why not new me?

Of course there’s nothing so wrong with the old me, but it can’t hurt to continuously attempt a reinvention of oneself, from time to time, just to keep things fresh.

That is why I asked my hair stylist for something new and different. I felt the urge, but couldn’t adequately express to her what that might look like. This is what’s hard when you can’t even really see yourself and what your hair looks like in the mirror.

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I did it. I chopped it all off. I’ve done this a few times before, but not for a few years now.

I felt the weight lift as the piles of hair vanished, but what did I really achieve in the end?

I came away feeling slightly restless and disappointed. It wasn’t the stylists’s fault. I myself didn’t know what I meant about something wild and rebellious, so how could I truly expect her to?

I don’t know if what I wanted could even be done. Or if I just don’t have it in me to really let go completely. Maybe that version of myself never existed or ever will.

It’s days like this that make me want to try new things and experience as much as I possibly can, while I am still able.

***

This doctor was new to me, but he came across friendly and intelligent – just what you want a doctor to be. I’ve seen many different doctors at the kidney transplant clinic over the last ten or fifteen years (since moving from the children’s hospital to the adult clinic), making hard to keep up with them all at times.

This particular nephrologist told me what I already knew because my brother had already been put on the medication. All transplant patients were being put back on a drug most of us haven’t been on since immediately after transplant. My brother, being only two years out, well it seemed like a no brainer. Both our immune systems are compromised, in order to keep the transplanted kidney working, but I have been stable for almost twenty years.

Life Threatening Cases of Pneumonia in Transplant Patients

He explained it in simple and direct terms, being very thorough in his explanation. There was no question – of course I would go on it. I would start taking this antibiotic, three times a week, for the foreseeable future. It was just strange that here I was, getting ready to celebrate my eighteen-year anniversary, and I was being put back on one more medication.

Right after transplant, you are on so many medications you need a chart to help you keep track. As time goes on, these can be reduced and almost always dwindle down to only a few. This felt like a step backwards for me, but a necessary one, just to be safe.

He was great, making me feel at ease, or as much as possible. This was not a huge threat to me, but I would do what I had to make sure I never had to face the worst.

I found it strange.

How much am I drinking? How much am I peeing?

Most people give little to no thought about these things, but as the doctor told me my blood levels, we discussed the importance
of keeping up on the liquids. It was a slight increase, but nothing to worry about at the moment. In the world of being a kidney transplant patient, it all goes back to a slow creeping up of the bad levels in the blood. After years the kidney slowly stops functioning like it was, eventually leading back to the need for dialysis and another transplant.

After eighteen years, admittedly, I’ve become somewhat complacent. I drink what I want, when I feel like it or even, when I think of it. after speaking with this latest physician, I make a more consorted effort to do better.

Last year, on June 5th, I did not speak about another year with my father’s kidney, here. Instead, on that day, I rode an elevator up to the top of a tower and stepped outside, looking down on the city of Toronto.

WALKING ON THE EDGE

I did this for several reasons, but mostly because I’ve decided to make it my mission to take risks and chances, to try new and exciting things, as my way of appreciating the life and the second chance I’ve been given.

It was sobering to learn there was this horribly dangerous strain of pneumonia that has been hitting, not the newly transplanted, but those who have had their kidneys for years, people like me. If taking a preventative medication three times a week could help avoid this; I wasn’t about to take any chances.

It just made me think. This pneumonia has hit people who may have become complacent too, not meaning to let themselves slip. Then, suddenly, some random antibiotic resistant virus hit and cost them, not only the function of their transplant, but their lives.

***

I don’t think of the possibility of rejection of my kidney or even death, not often, but on the occasion of my most recent checkup, the thoughts crept back in.

In that moment, it hit me how much I don’t wish to ever go back on dialysis. I don’t want to have to feel that way, unwell like that, ever again, but we don’t get a say in what ultimately will happen with a transplanted kidney. This particular chronic illness has not been cured for me, but I fool myself into thinking otherwise. Then I am brought back to reality, unable to stop wondering when it all could come crashing down.

As I touch the scar from that surgery, eighteen years ago to the day, I am grateful for these last eighteen years and hopeful, appreciative for however many more years I may have.

Think positive, right? I could be the exception. I could be the first to keep my first and only transplant for the rest of my life.

This is a flame of hope that burns bright inside my heart.

Thanks Dad, for being responsible for this hope in the first place.

It seems only fitting to me, that this transplant anniversary and Father’s Day share the June spotlight. Of course, I could never thank him enough, even if I had a million Father’s Days in which to try.

So I will keep on taking my meds, drinking…

It’s all about the intake and the output.

🙂

I will keep on living my best life, checking items off my

BUCKET LIST

as I go along and as the years pass, and remembering how far I’ve come.

June will, forever, represent change, transformation, and new beginnings. It was the first day of the rest of my life really. My anniversary and yet, my birthday, a new me in the month of June.

And come June 5th, 2017: PARTY – and you are all invited.

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