Tuesday, April 30, 2013

Reality Intervenes-- Day 30! The End of Daily Life as Blog Knows It.

 This last day of my daily-life blog experiment is a relief.

 My life always sounded more interesting on paper, but not when going day by day. At this stage of healing, when I am leaving the house mainly for writing group activities or shopping, what is there to tell? Do you care what I've read, eaten, thought? If I don't, why should you?

 Yesterday's phone marathon of evil made G-man sick, so sick I called him in sick for work today, knowing that his body would need time to return to normal. he's sleeping off the ill effects of dealing with NetSpend, and I'm only hoping he'll be able to eat some chicken soup later.

Meanwhile, I have things to contemplate-- on May 29, I will have my womb and a few associated girl parts cut from me, and that means a load of preparation is needed. With any surgery there are risks, and I can't let my lack of fear (so far!) keep me from making sure that I leave my house in order. Failing some horrible fuckup, I will still need care and help, and food and comfort. The fridge and freezer should be stocked, the laundry should be caught up on, the crack in the foundation should fixed-- that last will be hard to do, since our tax refund didn't come in in time (see yesterday's post).
Likewise, the garden plans I had aren't going to happen now, and I won't be getting my little country guitar restrung before recovery.

Let me say that, as someone living in recovery already, looking towards a new, weaker, more painful recovery period does not thrill me. The prospect of hobbling to the loo again needing help, does not thrill me. The worry that insurance and Medicaid might not cover every cost is my real fear.

 The only good part of this is, on one side, there is blood; on the far side of recovery, that will be ended. And maybe I'll channel some of that post-menopausal zest I've heard so much about.

 May, hours away, is still in fog; I cannot see what will happen here, but it probably involves fiction on a weekly basis. My original idea of joining the story-a-day challenge will, I can feel, be too stressful. A weekly short-short could work. I'll decide tomorrow.

Meanwhile-- if, for some crazy reason, you have some extra cash to throw at a good cause, here's the perfect thing:


"The family and friends of Marta are raising funds to help with bills during the recovery time after surgery, when she won't receive a salary."

 As of now she is dealing with chemo and its associated trials and losses. Marta is a writer, artist, and all-around superb person, and I urge you to check out her Etsy shop, her blog, her author page on facebook, and her Journey through the Carcinoma Wonderland page on FB. If you google her name, you'll see her mentioned in other people's blogs and shops, because her art is as tender and witty as she is; she's also wickedly funny and not afraid to stare into the eyes of a dragon. And as of now she is dealing with chemo and its associated trials and losses, and telling anyone who needs to know, exactly what that involves.

 Help support the arts in an absolutely fantastic way-- give for Marta, who deserves it. 

 And may your last day of April be green and growing.

 See you in May-- Mari

Monday, April 29, 2013

Reality Bites-- NetSpend vs The Little People

 Tax Issues!

 After waiting 25 business days for a refund check that was supposed to arrive in 20, we called NetSpend last Tuesday to find out where the hell our refund was.

 They hadn't processed it. Oh good. Because it wasn't bad enough that both TurboTax and NetSpend had misrepresented the so-called convenience of the tax product to begin, resulting in us having to go through three companies (and five phone calls) to have them promise to mail us out a check for the full amount owed, rather than us using the convenient little card they had sent. A card that adds to the ease of spending your needed refund from Uncle Sam by taking some of it as soon you activate the card; then again every time you withdraw any cash, use the card as a credit card, or complete certain other types of transactions. There are no free withdrawals even from approved ATMs, and you get to pay any individual ATM-assigned charges as well. Plus a monthly fee.

In other words, they aim to take at least 20 percent off the top, if they can. Which is not how their service was presented in brochure form, believe me.

We asked to have this process stopped and to receive our refund the old fashioned way, in a check, and they botched that up and never sent it. Now, having told us last week they would call us on Friday to discuss what they'd found out, they're telling us no, they've just processed our check and we need to be patient, and hope the damn check gets here by late May.

 This is what you call bad business. The hubby-man is on the phone now with the fifth person in an hour, after having been kicked off the system when he was supposed to have been transferred to a supervisor. They are giving him apologies and no help. There is no excuse for this kind of bullshit.

 And the worst part is, we get our refund done in February, no waiting, no procrastination. And here we're in the same boat as those poor bastards that did it last minute a couple weeks ago.

 No, the worst part is, we need that refund for house repairs and other important details that have gone undone, and we are facing accumulated excess costs and a lack of time, now, to get things accomplished before my upcoming surgery. They have jerked us around repeatedly, costing us time, money, stress.

And they don't seem to see that overnighting a check today is not a Herculean task for them, but a simple way to make things right. At this point, a decent company would seek not only to satisfy us, but seek to make some small form of reparation.

 I would suggest to all my friends and acquaintances, to spare yourselves the financial and physical headaches associated with this charlatan of a company. Avoid NetSpend, please help your friends and family to avoid them as well.

 As of this publication, they have not finished messing with us, or attempted ANY customer service beyond a lame apology. They should be ashamed of themselves.

 I wish them no peace.


Monday, April 22, 2013

A Day of Earth and Wine

   It's funny how doctors perceive time differently than we do-- when someone says, I want to cut you open as soon as possible, you think they mean Soon, not Sometime in the Next Two Months, but Don't Expect to be Notified in any kind of Urgent Fashion... so that you  can maybe plan your life, your food shopping, your recovery place and method, your caregiver's time off, your writing groups' schedules, your bills...

     So I'm waiting to know, still. But I did sign a note today saying that I understand that after my uterus is cut out, I won't be able to bear children. And now I'm free to work against the Z-pac I'm on by drinking a cold glass of Sauvignon Blanc, and contemplate the slow-rising Spring, and the fact that I forgot to call my sister on her Birthday, just because I am sick. Bad, bad Mari.

Now I have to buy her a present. A good one.

    Enjoy the earth! We aren't here that long. RIP, Richie Havens, you were a magic man--- Mari


Monday, April 15, 2013

Reality Intervenes-- Day 15, Who Blew Up the Marathon???

Looks as if my surgery will be in May after all. That's as soon as the doc can take out my parts, but she did have more bright news than expected-- I don't necessarily have cancer. So that's encouraging.

 Still, with this cold and the running around I've had to do, I feel dreadful. Can't breathe and sore throat and bod and no voice to scream out "WHY?"

 Why would anyone blow up the Boston Marathon? What could they hope to accomplish?

 I'm mystified, and angry, and sad. No amount of angst could make me want to turn it so spuriously outward. What sick fuck needs to take innocent people down to make a point?

 Whatever bunch of assholes did it, I can only hope they have not passed on their shitty genes. Parenthood should not be open to such vile specimens.

Anyway, no news yet on who or why. The world is beautiful but some want to mess it up so it matches their ugly insides.

 Have a an evening with some sad spots in it-- I think we all will.

 Peace, Mari

Friday, April 12, 2013

Reality Intervenes-- Day 12

 Both G-man and I have had a filthy cold all week-- I started getting it last Sunday, when he'd had it for several days already, and we're both still sick.

 It's not good to be sick at the same time. There's no one to run for groceries, no one to sit at the Laundromat while towels dry, no one to pick up more Nyquil. G-man has had to work the last few days, too, so even though he was ahead of me in the getting better department, that has stalled.

 I'm not getting better, I'm getting worse, as is my wont. The head cold that was focused mostly in my throat is now moving down, no doubt to become a nasty respiratory infection as usual.

 Today I woke up with G-man to get him ready for work, and then took a half dose of Nyquil and went back to bed, without setting the alarm. I woke up at 1:30 pm! Clearly I needed rest, and I could have stayed there cozily all day-- what's to keep me from it?-- but I know I have to muster the strength to go out for groceries and to deposit G's paychecks, or we'll end up spending a hundred dollars we don't have to spend, on takeout. I need to pick up more Dayquil, too.

 Let me say this about store brand medicines-- they work well most of the time, but the real Dayquil works better than store brand. I love old school yicky licorice-tasting Nyquil best as well, and I am more likely to splurge on that than on the day stuff; but G-man has to work on the meds, so that is where I'm likely to put down the extra $2 when I can.

 The stuff has gotten very expensive-- $12.50 for a combo pack of 2 12-oz bottles (a few days' worth if two people are using it) of Walgreen's night/day cold & cough fluid. And you still need cough drops, and sometimes throat spray.

 And I like to get Traditional Medicinals tea, too. But it's not enough for G-man to work on, just using tea therapy. I got through colds in college using it, though. Great stuff, if you're not on your feet all day, and have time to occasionally blow your nose.

 An aside for anyone that is reading this (ha! I'm sure no one is, and if you were, it's too boring to have made it this far) and doesn't know me enough to have the background, but I spend most of my time in the house, since I have a debilitating, incurable disease called Dermatomyositis, which has caused me to be unable to work for the last 6 years running, apart from unpaid childcare I did for some close friends and family members. And I'm just about to be diagnosed with some kind of gynecological cancer, which will require surgery.

 So if it sounds unfair that I get to stay at home while you get work, it is, for me. I prefer working, and started when I was 13. I worked 25-35 hours/wk during the first several years of college (as did most of the students I knew). I would love to be working now, at a job that uses my body and gives me fat cash! But I can't manage it. So I'm home, poor but brilliant. Why the hell else would I have 4 blogs?

This whining has been therapeutic, if nothing else. My online pal M. is dealing with 2 kinds of breast cancer, and the aftermath of surgery, (and still making the most gorgeous artwork!) while my first mammo came out clean. So I feel lucky, in lots of ways. But I did count on having this past week to prepare, housework-wise and mentally, for what my gyno will tell me on Monday afternoon at 2:15pm. So I'm pissed off, and have low energy, and the piles of books I took out of the library aren't drawing me as they should-- will a hot shower renew my will to Be?

 Stay tuned.

  Peace, and clear sinuses, Mari 

Friday, April 5, 2013

Reality Intervenes-- Day 5, A Day of Remembrance

Writing group last night was excellent, for me at least. The work shared was fun to hear, there were enough people commenting that I was able to lay back and let it run, (good, because I was tired), and I realized as soon as I got there, who would be the perfect person to take over for me during the meetings I will likely have to miss during my impending surgery/recovery.

 And she said yes!

 What a weight off my mind. Now if I can find someone to stand in for me with the Oracle group, I'll be golden. Might be easier to think about if I could get two good night's sleep in a row...

 So it's just past 5am, and I've been awake for two hours, up for one. I'm craving strawberry-rhubarb pie, and have none. Such pie is not easy to find at 5am in Kenmore, NY-- I'll be going without sleep and pie, and this post is the only writing I feel equal to, just now, though a story idea is macerating in my wine-soaked subconscious.

 Oh, yes-- today, the 5th of April, is a Day of Remembrance for lost internet friends. Just go to the FB page for this event:


 This was created by friend and fellow blogger, Casey Bee, (over in the UK, so in a different time zone) to commemorate those pals we make in the rarefied air of this nebulous place called The 'Net. Real connections do happen, and yet we are powerless when the emails or chats or updates stop coming. Often, there is no one to tell us what happened or how, and there isn't much sympathy for our 'cyberloss,' but Casey has rectified that, by inviting us to come together and share our stories, support and grief.

 We may not be able to cross an ocean in person to visit an online friend in the hospital one last time, or attend a funeral and pay our respects that way-- but we can gather in this ethereal place where we once met those lost friends, and remember that they were here, too.

 See you there, later-- Mari


Thursday, April 4, 2013

Reality Intervenes--Day 4

Writing group tonight. This means facing the dinner hour much earlier, and having to look human in public for several hours. My sister and her hubby are coming to check it out, too.

 Let's hope it goes smoothly, because the proprietors of the venue do not, anymore, look kindly on us.

We bring in some cash on an evening that is traditionally pretty thin there, but still, they've said inhospitable things to some of our members, and in particular, one member that often orders a full meal.

 What kind of business sense is that?

 I'm looking into several new venues, and hoping they will be accepted by the group. Our meetings have gotten larger lately anyhow, and we need more room to spread out. Plus, the chairs at our usual place are not comfortable, and they don't serve real lattes anymore.

  Wish us luck!!! 

Wednesday, April 3, 2013

Reality Intervenes-- Day 3

 Yesterday was not the downer I expected, as Doc Tyler, a fun and caring individual, set at rest my worries about the lump in my side, and cleared up a few things about the whole "removal" of women parts I am probably facing in the next month or so. He said I'm doing pretty well aside from those issues, which helps to know.

 Today, the abdominal/pelvic MRI happened. Not too bad, some calming techniques needed, and of course I had to forgo my morning coffee-- all food and water-- until the deed was done. They also shot some liquid metal into me for the last part-- it's called taking the picture 'with contrast.'

 I'd been prepped with a scrip for diazepam, but I only took half of one, and not sure it had much to do with my relative calm during the tests. At this point in life, I've accepted a fair amount of scary shit to get to necessary ends, and I'm certain there's worse to come. 

 On the lighter side, an online acquaintance equated paganism with immoral behavior, just by the by; and a friend screamed slanderous abuse at me over the phone, at top volume, because I gently suggested that he shouldn't rush to marry a woman who had very recently come back into his life. Note, I didn't tell him never to marry her, just not to rush into it, and I said it calmly and tactfully. But he screeched bullshit, so I hung up on him. My online pal-- a nice woman that I respect a great deal-- I asked her to notice the implied insult to all non-Christians, and I think it's leading to a potentially useful dialogue.

 The pasta I had for dinner, not so useful-- gummy and badly sauced. I didn't cook it folks, I heated it up, and threw most of it away in disappointment.
 Was it a good day?

 Hell yes. After not eating for 13+ hours, we went to lunch (extravagance!) and then came home and took a nap-- bad sleep last night. We're going to listen to Shopgirl on audiobook CD, read by Steve Martin, and snooze.

 Kenmore is dark, but still lively at 9:38 pm. Have a good night!


Monday, April 1, 2013

Reality Intervenes-- Day 1

 Inside and outside, I will have a lot of new, weird, and possibly unpleasant things happening this month. It starts out, today, with the anniversary of my sister Linda's death from cancer 17 years ago. (The year it happened I was reading The Wasteland for a class, too, and I knew the heart of that poem without being told by my teacher, believe me.)

 I'll experiment this month with a Daily Life blog, to capture the oddities of having my first MRI, and other firsts that will come after. And maybe some great things can happen too-- the writing workshop I consult for at The Oracle Charter School was on the brink of ending, from lack of participation, when one of the student writers came back and gave us a shot of new energy. We get to continue hearing from a group of kids that need to be heard, and should be heard from, for this month at least.

 Bringing kids into the power structures of their own organizations and activities, seems to me to be essential to honestly serving their needs. And now that my cohort in this venture has done that, we may have a chance to positively affect some young writers.

 It's not deeply important to me that the high school kids attending the workshop stay writers-- what's important, crucial even, is that maybe through having some recognition and affirmation of their work, they will want to keep presenting their creative selves to the world, and will seek out valuable criticism in other endeavors, too. If we can offer them an outlet for expression and build a little trust between us and them, I'll be happy.

In the meantime, my gyno doc wants to remove a now-useless part of me, and I have to find someone to stand-in for me at the workshop, should I need it in the next session or two.

Hopefully April won't be all about surgery and finding out if I have cancer; hopefully there will be good spots, spots of good news and good luck. Tomorrow my GP tells me what he thinks about the test results we've gotten so far-- that means today may be my last day not to know what is wrong with me. What wouldn't you give for a day like that, hmm?

I'm trying to prep for all contingencies, but doing one chunk at a time, so as to not be overwhelmed. Starting this month's blog theme has been a small bit crossed off my to-do list. Aren't you properly scared off for the rest of April now?

 If not, then here's my little tribute to Lynne, a song I wrote about her during my very first FAWM. Full of little true pieces of her, it may not make much sense to those that never met her, I suppose. She died at 44, and that makes no sense at all.

Hasn't been recorded yet but for a quick-take scratch vocal, that is not worth sharing. I am singing it as I type, though, and have sung it every year since the writing.

April Fool (The Linda Song)

C 2008 Mari Kozlowski

As your heartbeat was, for me
I still sing between the jumps
Recalling words you used to mispronounce--

Your voice, your voice is
A coarse melody that's faded
And your face has drifted
Down through layered time
But I still see

Your long black hair
Swinging down your back
You foxed around
In borrowed clothes you never did return

You've given me a wasteland
Of days that I can't share
But on your birthday
I will drink a cup of wine
And listen to Lou Rawls

Timeless was your scent
It was far too sweet and heavy
There's no logic in your bones
Through all these years, you're still
An April fool.

 Read a poem today!!! It's also National Poetry Month.

                                                                                         Peace, Mari