Sorry to whine.

Am feeling very distressed.  I am angry, depressed, tired, frustrated, somewhat helpless.  Mostly I just don’t have the energy to deal with all these problems, which are probably trivial compared to a homeless person with a chronic illness, living in a war-torn country, etc etc etc.  But here and now, I wish I was one of those people who don’t seem bothered by too much, whether it’s bills or housework or the needs of family members or having all their stuff moved constantly in the pursuit of home renovation.  I truly envy those folks, and wonder if they’re just born with a natural capacity to shrug things off, believing that if something’s ignored, it’ll just go away.

I’ve been paying an arm and a leg for health insurance through Kaiser Permanente forever and a day.  There was never any question or complication until one day, someone discovered I had Medicare.  I didn’t even know I had it because, why would I?  I’ve always had Kaiser, which was originally paid by the Hubs’ employers.  After his abrupt resignation (and our move to SoCal), I’ve had to pay for it, but they’ve treated me alright, approved the clinical trial which has thus far extended my life… so it was all good.

Now, because I “suddenly” have Medicare, all the medical billing is screwed up, and I can’t figure out why.  And I’m pretty sure it’ll take days on the phone and visits with various billing departments (since there’s the actual physician’s fee, which is separate, and the hospital fee) before it’s all straightened out.  Apparently the thing is to bill the government first.  Whatever they don’t pay, Kaiser will cover.  If they weren’t paying my airfare to Denver, I’m pretty sure they aren’t covering $1000/month worth of visits.

I sought advice from HICAP, which is a state-funded agency whose volunteers provide assistance with health insurance questions.  The counselor I spoke with was a health insurance professional for 17 years.  She said she’d never seen a case like mine, and answered all my questions with more questions.  Her final conclusion was that I’d have to call Medicare and Kaiser for answers, and perhaps I should become a HICAP counselor.  Yep, that’s what she said, besides that I was an inspiration for having survived so long with Stage IV lung cancer.

So while I will now spend the night before a trip to Denver scanning every bill and receipt I have – if I can find them, as my office has been moved 4 times and previously arranged things in piles – I wish I had the benefit of a) a scanner with a feeder (given to my folks because someone didn’t feel the feeder was necessary), and b) someone who could advocate for me – get the stack, make the calls, straighten this out.  Because I am just so tired.

Doh.  Now the scanner won’t work.  And the rest of my family is calling me.  I think it’s time to think of hiring someone, or a number of people maybe, to deal with the stuff I need to do for myself and my parents.  A hired advocate, that’s what I need.  Any takers?


Always in my heart

Bruce Bay, South Island, New Zealand, September 2012. A good place to remember the sisters I’ve lost to lung cancer (though now I realize Carolyn passed away a year ago on November 18).



P & Q

I can finally sit for longer than 3 minutes! Hurrah!  And I actually watched a movie tonight – Seeking A Friend For The End of The World.  It was okay.  I preferred Perfect Sense, with Ewan MacGregor and Eva Green.

I hope everyone had a wonderful Thanksgiving.  Mine was overly hectic, with three people cooking to the very last minute.  As much as I love leafed Brussels sprouts, I don’t think I’ll be doing that again any time soon.  They were good with bacon and grapes, but I think I’ll just shred them next time and do the bleu cheese thing.

And…fried turkey is good, but not cost-effective unless you’re frying say, 3 turkeys.  All that oil!  Anyway…

The Hubs is back in New Zealand.  We spoke via Face Time tonight.  He’s in a nifty pad, sharing with another driller who used to be a chef (cooking salmon as we spoke).  He gave me a tour of the pad, his new truck, etc.  Not too shabby.

I’m still hanging on the clinical trial I’ve been on, still flying to Denver every other Wednesday.  I’m now on the 11th cycle, which really is a miracle for which I’m grateful (to god and science).  I had to see an eye doctor for my chronically infected eyes, and a podiatrist for my chronically infected toes (paronychia), side effects of course.  The scalp oil I’m supposed to use just hurts, so that problem hasn’t been resolved, and the bottom of my feet continue to be tender and sore (walking is a real problem).  I have a scan on December 12, so we’ll see.  I’ve been coughing quite a bit more, but then – is it construction dust from all the remodeling Hubs has been doing for the last month?  (Wood floors, electrical, paint, demolition, etc.?) Did I forget to mention he converted the family room into a formal dining room, removed a wall, and added cabinets and a wood countertop (supposed to be temporary until we re-do the whole kitchen)?  He also painted the living room and chopped up the fireplace in order to mount the tv above it, then installed a gas insert.

While this doesn’t completely explain my blog absence, just imagine what it might be like to spend what could be one of your last months on earth going from one box store to another in search of light fixtures, flooring, paint, wiring, dining furniture… In between trying to get incompetent people to print a copy of your dad’s book, taking him around to get second opinions, and attending to the usual wifely duties of homemaking.  Thanks to not having my priorities straight, Kaiser has now sent a collection agency after me so now my medical billing has to be rectified.  I need help with this stuff and there really isn’t anyone to help.  My sister’s response is that she “can only help with things that can be scheduled”.  If I could schedule people to take care of my family’s needs, I could do the same for my own needs.  Anyway… I shouldn’t whine.  I forgot.  I’m supposed to be happy that I don’t live in a war-torn country, that I’m not starving, that someone is providing for me, etc etc.

I’m thankful.  Now I’m supposed to do yoga to quiet my mind and work towards positive things.  So I celebrate finally being able to watch something I want to watch, finishing 6 loads of laundry (only 4 more to go), and having the cat litter in my bathroom because there is nowhere else to put it (the cats have been displaced by renovation).  I have high hopes that I’ll get to go to a movie and do something fun in the next couple of weeks.  Home renovation isn’t my kind of fun, although the room is beautiful and entertainment-worthy.  (As I’ve said previously, I used to enjoy home improvement, but under the circumstances, it seems like a gross waste of (borrowed) time.  However, I seem to be alone in this opinion and in the belief that there are other more fun and meaningful things I could spend my time doing.)

As for the New Zealand thing… I guess I’ll just roll with the punches.  Not much else to do.  Anyway I probably won’t live longer than it would take for Hubs to immigrate.  He says he’ll probably work something like 4 weeks on, 1 week off, or 8 on, 2 off.  He comes back for Xmas, which will be spent with his family, then he returns to NZ at the New Year.  He’ll probably work straight through to March.  I may be on another clinical trial by then, if I qualify, or…?

I’m thankful for Ativan and Vicodin.  I think I’ll choose Ativan tonight.