Missing

Missed a couple days, sorry about that. Last weekend I was in Columbus, and writing a post on my tablet did not appeal. Yesterday I was just exhausted, and still had plans for the afternoon. I didn’t go to church this morning because I hurt. I don’t think it’s from yesterday, I didn’t do anything unusual, I think I was already tired and sorry. Well, I was a bit sore on Friday, so I guess that makes sense. Yes, kidney thing. If anyone tells you there’s no pain with PKD, tell them they’re wrong, and all their degrees don’t make them right.

Sunset Whim_0085a
Eastern Cincinnati and Dayton (?) Kentucky as seen from Eden Park.

I have a few things on my mind right now. Nothing huge, just trying to figure out how I’m going to get to Vienna next June with my choir, and what exercises I can do to lose weight so it’s not so uncomfortable flying all that way. Not really a good enough reason, since I’m still not sure I’m going to be able to pay for the trip AND the flight yet, but it is a reason, and if it motivates me, I’ll take it. No, yoga is not an option; kidneys are too big, too much bending and twisting makes me nauseous. Sore too, but nauseous is the worse one. I hate being nauseous. Makes it hard to eat, and I have enough trouble doing that as it is. I suspect that part of my weight problem is the crap I eat, but the other part is I may not be eating enough. Counter-intuitive, I know, but if you eat too few calories for too long, your body goes into starvation mode and starts hoarding. I can’t eat a lot at one sitting – no room. Kidneys take up a lot of space, squish and move other organs and innards. If I eat too much too quickly, I get, well, nauseous. and violent heartburn. I take Prilosec regularly for that. Not daily, just every other day or every three days, but it makes a difference. Pepcid stopped working for me a while ago.

Sunset Whim_0120a
Eden sky while the sun sinks below the horizon.

What an exciting post, all about the gastrointestinal issues caused by my PKD. Tell you what, I’ll go back to the week before last, which did not involve a single GI conversation.

Fall showed up with a vengeance a couple weeks ago. I had to wear two layers some days, and spent an entire day in a pullover at work. I don’t do cold. That Tuesday, the 14th, it had been disgusting and rainy all day, dark, gray, and cold. People were miserable. Just as I was leaving work to go home, though, the sun decided to make an appearance. Since I’ve been making a concerted effort to get back out there with my camera, something that brings joy to my life, I did just that. Stopped at home, picked up my camera, and headed out for Eden Park, to see what I could do with the sunset. It was still chilly, but I didn’t care – the sun was out, and the clouds were spectacular. Since it was a weekday, there probably wasn’t going to be much in the way of crowds, and there wasn’t. I got to take my time and look around, stare at the sky, watch the ducks (not many) and the people (even fewer*).

The sun had finally sunk low enough that I couldn’t see it, and it got even colder, so I decided to head home. Thought I’d make a quick stop, though, pick up some apples, since I was out. Something happened, though. No, nothing bad, but only because I kept my head. Sitting at a traffic light, waiting for the signal to change, I looked to my left. The clouds had parted once more, and the sun was visible in the sky, large and orange, and sinking. I had to find a place to stand! I couldn’t stay where I was because, well, traffic, but I got through and found a place to pull over. I missed the sun itself, but I still caught the sunset. I had a few moments where I forgot I was holding a camera, and I just stared. What an incredible moment that was! And I even remembered to go back to the store and pick up apples; I was a little proud of myself for that.

Sunset Whim_0166a
Yes, the sky really was that color.

What an incredible event to catch! That weekend I spent with friends, including a karaoke evening in a fun dive bar. If I lived in the area, I could see becoming a regular. Had to be the most diverse bar I’d ever seen outside of a culturally-sensitive TV show. I had no idea that existed in this state. Our Over-The-Rhine area is being redeveloped, with nice restaurants and restored buildings, but the diversity is still missing. Oh, the original residents are still in the area, but they’re not participating in the revitalization. That’s for those with disposable income, something they tend not to have. But that’s for another post.

I did make a run back home for church. We were installing a new minister, and had a choral piece commissioned just for that. Written by Dale Warland, which is kind of a big deal, it was a beautiful piece. Simple and elegant. It’ll get performed again. Bit of excitement, though, I needed gas. Desperately. I didn’t realize how desperately, though, until I passed a Sunoco station on I-71. When I passed that exit, it looked like I probably had a good 30 miles left, so I should be fine. Maybe 2 miles out, the needle on my gas gauge dipped into the space between the white line that says you’ve got a way to go yet, and the red line which says you better hope there’s a station at the next exit, and the next exit is within a mile or two. It wasn’t – I mapped it when I got home. That Sunoco station was about ten miles from the BP station I found at the next exit. Thank goodness it was open – the next nearest station that I could have gotten to was 13 miles away. My tank holds about 14 gallons – when I filled up, I got 13.28 gallons. I’ve never let my gas tank get that low, so I was more than a little nervous. Especially being in the middle of nowhere Ohio on a Sunday. *shudder* Won’t be doing that again!

Spring Grove with Hennigan_0072b
Oak leaves mid-transition.

Yesterday I went out shooting with a former teacher of mine (still weird to call her by her first name). It’s fall, trees have begun to change, and she’d ask to go along next time I went out for fun. Planned, that is. This is the first planned outing I’ve had in quite some time. I like shooting with others – they help me see things I might otherwise miss. Definitely a good idea. We went to Spring Grove Cemetery and Arboretum. If you’re ever in Cincinnati, you should make that a place to visit. Sure, there are graves all over the place, but the grounds are spectacular. People really do use it for photo shoots – I’ve seen women in wedding gowns and seniors in formal dress, and when I was doing my younger sister’s engagement photos, I had to work around a photographer doing some family portraits. There were photographers doing portraits yesterday too. It was too beautiful out not to. Although, strong sun actually makes it harder to get a good shot. A brightly overcast day is perfect. Even light, few shadows.

A good time was had by all.

Spring Grove with Hennigan_0035a
Reflection of the trees in one of Spring Grove’s many ponds. Lakes? Body of water, okay?

_________________________

*That’s right, fewer, not less. It’s a countable amount. If pressured, I could give an actual number of people, assuming I counted. There were maybe five.

Advertisements

Traditions

I went to sleep late last night. Technically, early this morning. I think it was nearly 2, honestly. And yet, I woke up this morning at 7, ready to face the day! Okay, no I didn’t. I did wake up at 7, and I did not go back to sleep, but I sure wasn’t ready to get out of bed, either. An insistent bladder made sure I changed my mind. It’s okay, I wanted to get up. Today I was going to the Renaissance Festival! Whoo hoo!

Human Battle Chess
Human Battle Chess 2012. We saw the man battle again today.

It’s become  a bit of an annual tradition. Years ago, I’d gone a couple times, when it was still new and only the truly dedicated attended (pretty sure I’ve mentioned this before), but it wasn’t a regular thing. As comfortable as I am doing things alone, some things are just better with someone else, and I either had no one else to do these things with or I had no money. Usually the former, actually. Because it was still on the new side, the 10th anniversary festival wasn’t too terribly expensive. and everyone dressed. Well, nearly everyone, anyway. I enjoyed it, I just hadn’t made it a regular thing. Now, though, it is. Now I have someone to go with and we have fun. Sometimes we finish up with dinner. Might be fast food, might be a real restaurant. Tonight, we went to Outback. And now I have lunch for tomorrow.

That’s not what this is about, though. It’s only a few years along, but I have what seems to be becoming a tradition, one I like, this annual trip to the Renaissance Festival. Just like Easter, Memorial Day, Labor Day and Christmas are spent at my father’s house, and stores attempt to outdo each other in the Black Friday wars. Or should we call it the Turkey Day Turnout? I’m not quite sure how I feel about this – well, I do, truly, I think it’s horrible that people will have to work on Thanksgiving Day, or feel they have to shop on Thanksgiving Day, instead of spending it with family, watching the Lions lose. The only tradition held sacred is the one of consumerism, convincing us that the model we got last year – or last month, last week, last night – is outmoded and needs desperately to be replaced.

It’s all well and good to say it helps the economy to be constantly buying. And in the short term, it does. In the long term, it’s untenable. What we have is a closed system. Like water, which circulates around and around, cleaned, swum in, drunk, evacuated, discarded, and cleaned again for another trip, this constant buying has created an economy based on the same money, the same jobs, the same everything we already have, just not as new. That means more products have to be created, which is great, because it means people have to be employed. Then those products have to be sold, but because there are so many choices, those products have to be made more cheaply, which then means the manufacturers have to cut wages or move production to a place where they hadn’t heard of child-labor laws (or are corrupt enough to ignore them), and make sure they keep advertising so that we know when our item is obsolete, when we need the new one. Of course, as products are manufactured more cheaply, they become less durable, more disposable, and more likely to be replaced. The only people truly being helped by this are those who own the companies, who have significant ownership in those manufactories, not the ones they hire. In this closed system, rather than the money recirculating – the lie we’ve been told for decades – it is pooling at one end, with people who don’t need it, other than as a way to keep score.

Lytle Taft and Tacocracy_0020b
A picture of the Great American tower just because. I like it.

It’s no longer enough to have a place to live and food to eat – now we need the coolest phone, the biggest television, the hybridest car. I’m certainly not innocent in all this, I’ve spent money I couldn’t really afford on things I didn’t actually need, just so I could say I had it. I’ve bought the latest re-release of a DVD, a special edition, now with a different font! I don’t need it. I already have a DVD of that movie in excellent condition, sitting on my shelf. If I’m satisfied with that, though, the publishers can’t make anywhere near as much money, so, they convince me I need the new version, and convince us that if they keep making stuff, they can keep people working. If they were really as altruistic as that, wouldn’t they pay a living wage? I’m not talking about raising minimum wage to $15/hour – that’s ludicrous, and would cause inflation to explode. But there was a time when the minimum wage was intended to be a living wage, enough to have a roof over your head, and food in your pantry. It’s not.

Now, I realize there is so much more to this, of course, that it’s just not so simple as make less stuff and stop selling it to us. It is, however, a dangerous tradition, elevating the cost of living, as well as the minimum expectations for a reasonable life. As it continues, the lower class will grow, the middle class will evaporate, and the wealthy will continue to blame it on the poor, many of whom are perfectly honest and hard-working.

It would appear that once again, the topic has veered from my original target. That was a bit unexpected. Still, this economic tradition has to stop.

Rationalize

Won in an auction at work for United Way. Don't be jealous...
Won in an auction at work for United Way. Don’t be jealous…

I’m kinda broke right now. I have no one to blame but myself, of course. Not completely, not by a long shot, just lighter in the bank account than I’d like to be. I went a little nuts in the past few weeks. It happens. Not often, fortunately, but it happens. I bought books, pans, a pillow, won an auction, got a jersey, paid a collection, and colored my hair, all in a very short time. Or as I like to see it, I supported an independent brick-and-mortar bookstore, acquired high-quality non-stick pans – ceramic, not Teflon, and by Calphalon. They’re amazing – replaced a pillow that was wrong for the way I sleep, thereby eliminating morning headaches – so, for my health – acquired a valuable collector’s item while supporting a worthy cause, acquired another less-collectible item, supporting a no-less worthy cause, got a creditor off my back, and colored my hair, all in a very short time. Sounds much better than “I forgot to keep track of how much I was spending and how much I already spent.” That’s okay, October should be fine – oh wait, I have something to do every weekend, and none of it is free.

I can probably come up with all sorts of reasons why this is the case – I’m readjusting to see how much money I actually have, now that that huge credit card bill is gone; I’m trying to get everything in now before I have to start pinching every penny for the Vienna trip; I see my neph on Monday and I’m anxious, so I’m deflecting by spending money I probably shouldn’t; all the recent deaths (friend’s husband, alumni a few years younger than I, and of course baby Chrisitian) have gotten to me, and so I’m spending money because it feels better; all the really cool stuff happened at once (between August 30 and October 3, if my calendar is correct). Whatever the reason, I know I need to get a grip on it and stop doing it.

I had plans today; I was going to go to the Renaissance Festival with four of my sisters, and a couple of others who might as well be my sisters. I was looking forward to it, even though it’s cold. Seriously, below 60 in October, who’da thunk it? Plans change*, however, and not always for the better. So I’m going to cut this short. I’ll leave you with a few sunny photos. I think there are a lot of us who need a little sunshine right now.

Lytle Taft and Tacocracy_0003a
Great American tower as seen from the Taft Art Museum
Lytle Taft and Tacocracy_0115a
End-of-season rush for the bees in Lytle Park.
Lytle Taft and Tacocracy_0123a
No idea what these are, I just really like them.

Have a good day, and be kind to each other.‡ You never know when a bit of kindness could save someone’s life.†

_________________________

*Yep, got a call while writing.

‡That doesn’t mean become a doormat or do something you can’t, and it doesn’t have to be a kidney or a new car; hold a door open for someone, smile, say “hi,” something.

†That’s actually not hyperbole; a bit of kindness has saved lives.

Reunion

A woman I knew in high school, who I connected with again on Facebook (seriously, as much as it irritates me, it’s been a great thing to have), lost her little boy. He was born with a nevus, specifically a Congenital Melanocytic Nevus, and a large one at that; a two-in-a-million chance. No, seriously, about 1 in 500,000 are born with a giant nevus, so two-in-a-million. The larger the nevus, the greater the risk of developing melanoma, although mathematically, it’s still on the low side (10% or less). Christian fell within that group.

Eden View_0132a
A duck for no reason other than a temporary distraction

He spent a lot of his life in hospitals, between first replacing the nevus with skin from the rest of his body, and then surgery and treatment for the malignant tumors that spread through him, his mother by his side. There were some very dark days, but he inherited his mother’s strength and attitude. So many photos and videos show him being curious, bubbly, even giggling, playing, enjoying life in the hospital or out.

Last week, after aggressive treatments for his tumors, he developed a urinary tract infection. He fought it for as long as he could. On Friday, about 9:30, in his mother’s arms, his fight ended.

I read about it Saturday morning, AFTER my blog post. I almost pulled what I wrote and put up something else, but I couldn’t stop crying long enough to do it. Although I was alone in my house, I wasn’t alone in the world; several of us, some who’d only known her through her Facebook page, some who’d known her from a past life (high school for me), and others who’d just seen her hours before, spent a good chunk of Saturday in tears.

Yesterday was a difficult day for me. I spent the evening with a few hundred people who had one thing in common – celebrating a life cut short by cancer. People from all parts of her life came to pay respects at his visitation last night, including a fair chunk of SCPA alumni. Others went to his funeral service this morning. I can’t imagine what it was like for her, his father, their parents, their families, people who had grown to love this bright light, celebrating his successes and supporting through his losses by his side. I know that there were a number of people holding their own kids a little tighter the past few days. I know that, even though I never got to meet him in person, my life is a little richer for him being here, and emptier now that he’s gone.

It frustrates me sometimes how much press all the cancers get. Almost no one knows anything about PKD, or how it can make people look pregnant, how they can look otherwise healthy while their kidneys fail, how fatigue sets in at the slightest provocation, how there’s nothing we could have done to prevent it, nothing we did to cause it. Then a friend says she has cancer, says her husband has cancer, says her child has cancer, and none of that matters. Not then.

October is Breast Cancer Awareness month in the US. I know a lot of survivors, thankfully. I’m grateful for every one. Sometimes, though, cancer wins a battle, and sometimes it’s a devastating one.

Christian’s was a life lived fully, if not long. In his 19 months, his story touched hundreds. He’s the real reason I bought Devon Still’s jersey (which I still haven’t gotten). He spent his last days at Cincinnati Children’s, where the money from the jersey goes.

I’m not one to say a person shouldn’t feel sorry for themselves because someone else has it worse; all that does is make people feel badly about saying anything, so they say nothing. That competitive attitude, the Us vs. Them helps no one, and hurts all. What you experience is no less significant because someone else is experiencing something different. If you’re moved and are able to do so, please donate to a well-researched charity of your choice. Or take peanut butter and jelly sandwiches and bottles of water to homeless people, or buy a cup of coffee for the person behind you. Whatever you do, remember there are parents and children and siblings and spouses and friends who have an empty space in their hearts every day, that you are not the only one in the world with troubles.

In his mother's arms
In his mother’s arms

A special thanks to the men and women in hospitals and hospices who do everything they can to make a hospital stay as pleasant as possible. I know a few of those, too, and they are truly special people.