Still out of sorts

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It’s been an interesting couple of days.  Pouring rain, which makes fighting my sleepiness incredibly hard.

Luckily, despite some rain damage to my gutter, I don’t appear to have any rain damage in my house.

(This video was taken about 6:45 am last Friday morning, as incredibly high winds tore part of the gutter off the roof of my home).

Luckily, it didn’t damage anyone else’s property (phew!), but that also means that the work I had done this Summer to reseal my roof will need to be reinspected, possibly some patch resealing done, and I’ll have to get new gutters and get someone to install the missing length, while checking all the rest of my gutters for knowing whether or not they should all be replaced at once.

Did I ever tell you how much I dislike being a homeowner?!!

Frankly, this repair has me scared and considering canceling my UK bucket list trip as I don’t know how I will afford everything given the state of this mobile home.

Everyone says that homeownership is the best way to affordable retirement / disability when health issues arise.  Frankly, I’m not convinced.

*If* I was on a subsidized housing wait list, the most money that would be taken from my monthly check is 30% of my monthly income, or less than $800 a month.

Right now, I’m paying more than 50% of my income on mortage and space fees (which include cable, water, sewer, trash, gas and electric fees – that the park mandates and which my efforts to conserve don’t seem to dent).

I was told my monthly expenses would never be higher than $750 a month for the space fees and add-ons, and I’m running about $900 (or $150 a month more than anticipated), before we deal with ongoing maintenance and improvement related expenses.

$150 a month doesn’t sound like much.  Until you don’t have it.

Add in my deductibles being increased across the board on my healthcare costs, and that the cost of my meds is through the roof at $145 for the most necessary prescription (when last year it cost me $35 a month), and it’s a recipe for disaster.

We had a running joke in my family that only I could get a government job and have that “secure” job fail as the government went bankrupt and laid off all city workers.*

What’s really strange is my relationship with money and so-called “blue chip” or secure investments.  Every stock I’ve ever purchased has lost money.  Seriously.

So, should I be surprised that home ownership and being on disability are not the short term solutions I’d hoped they would be?

Nah.

If I wrote my life story down, no one would believe it’s true because I just seem to go from disaster to disaster.

I’m finding it macabrely fascinating that all I want to do is tie up a few loose ends before I go.  Not live beyond my means or reserves.  Not be a burden to anyone else, and yet the fates go, “ha!”

Not sure how this drama will end in the short term for staying out of trouble financially, but for now I have an attitude problem I’m trying to shake.

Hopefully, one of the pots of promised money will come through for me before I have to cancel my final bucket list trip. Until this matter is resolved, please pardon my sucky attitude.

  • City of Richmond, CA, 2004.  First City Bankruptcy I’d ever heard of.

Decisions and Medication

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I’ve lived my entire life watching the budget be wrecked for my family (when I was a child) due to  “unaffordability”.  I’d get sick.  I’d need yet another surgery.  Some strange infection needed megabucks to pay for the prescriptions.  You name it; it happened.

Whatever happened, I lived the truth that “Sh*t Happens”.

I lived within my means.  I made room for fun while saving for the future.  In the end, though, sh*t happens.  Sh*t always happens.

Right now, I am dealing with increasing costs relating to what’s involved in living, and I’m deciding to give up refilling my medications, at least in the short term, as it’s the best option I have for controlling my health.  So, my next SSDI payment is due, and before I’ve event dealt with the money for house repairs, I’m already down to $25 to live on for the month:

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While there is $200 in the “savings” account, that money goes quickly, especially if I have to pay for gutter repairs to keep Abner Kravitz off my last nerve.  (The damage happened yesterday, and he came out during the storm to tell me what to do.  Ugh.  If I wanted a bossy guy, I’d be married).

While I appreciate the recommendation of someone to possibly fix the damage, or, at least pull down the damaged gutter so that Abner won’t have to look at it, the last thing I want is Abner in my face when I’m already stressing.  I don’t go out in storms, and I’m not going to deal with this mess until after the storms are done.

I can hear the bandsaws working locally, so I know that others feel differently.  For right now, though, I don’t want to have to explain to anyone why I’m pinning my hopes on winning my case and getting my backpay.  Or, on being terminated and getting my hands on my 401K.

At some point, I will run out of money.  That’s how this game works.  Until I reach that point, though, I’ll put a little into the bucket for every need, and juggle the funds and I work to get through each month without adding to my debt.

At this point, I’ve sent an email to the Diabetes Doctor about the outrageous invoice I received after having gotten a quote for less than $180 and being billed for $854, but that doesn’t make the doctor’s bill go away, and it doesn’t make a dent in the fact that – presuming she won’t back down on her invoice – I have to spend the next 4 months paying $100 or more a month for services already rendered.

When one has COPD, though, it’s the cost of the medicines which are crazy.  I’ve done my best all my life to keep my medicine cost to a minimum, and to investigate alternative therapies such as breathing exercises in place of medicine as emergencies happen, and you might have to get by without your medication if an emergency occurs.

I’ve already been triaging my medical care to move my doctor’s appointments around so that I can afford one a month, and keep on the side of the angels for being “compliant”.  (The last thing someone wants to be labeled as is “non-compliant”, as that makes a difficult medical situation much, much worse).

I’m nor writing this, though, to ask for help or for pity.  I’m doing fine compared to many others as I haven’t missed a meal, haven’t skipped my meds, and still have a warm and dry place to lay my head each night where I can be (relatively) undisturbed.

I’m writing on this topic, though, to emphasize so that others may understand that one can be rational, non-depressed, and still believe in euthanasia.

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Canadian medicine is more humane, in my humble opinion, but I’m not Canadian.  While the American way is to believe in life at any cost, that’s not my way.

A wonderful guy who is suffering from COPD and is a veteran spent some time in the hospital again this week because he couldn’t get air.  He couldn’t catch his breath, and he was really panicking as he was struggling to breathe.

After 3 days in the hospital they sent him home.  His doctor also told him that there was nothing more that they could do for him, and not to come back.

I went through something similar with my Mom during her last year of life.  First, I got to the hospital (she’d been in for 9 days) to see that they were letting her die, that her doctor never showed up to oversee her care, and that they were disrespecting her wishes to die at home.

So, I took things in hand.  I had a fight with my Baby Sis, but I got Mom home under hospice care to die.  Only she didn’t.  Mom rallied, and I’m thankful every day that hospice was there to help us be honest about her situation and her options.

What people refuse to understand is that there is no getting out alive.  At the end of the day, the medical profession is practicing their art and guessing about what will be most helpful to you.

While we don’t have a date stamp on our foot, we all know that we will die someday.  Maybe not today.  Maybe not tomorrow.  Someday.

But, when we refuse to provide humane support for people who are on their last leg, leaving them to juggle their own finances, manage their own options, and wandering in the medical halls of a large industry trying to ensure that they haven’t been overlooked?  That’s just the height of cruelty to me.

So, I will do what I must to survive, knowing that I believe in euthanasia, and want simply to be able to afford to take care of myself without a lot of drama until it’s time to put me down because my quality of life is at is end.

No passive neglect, forcing me to choose between housing and medication and food.  But, an actual, honest decision about options once I’ve exhausted my resources.

I think it’s the height of cruelty to keep me alive from birth on, despite my medical conditions, and then demand that I hurry up and die because my life is non-sustainable without appropriate medical care, housing and food.  Oh, while also denying me end of life choices because “euthanasia is wrong”… Especially when it’s according to some faith or god that I don’t believe in.

 

275k and Whining

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I’ve been busy trying to find the positives in my life.  Going to City Council meetings.  Getting to know the pace of my small-ish new home.

Everywhere I look, I see potential.  Beauty and potential amid way too much construction.  The town council is trying to make the downtown area “walkable”, and is trying to control the growth of the city such that it doesn’t lose its charm.

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They (the City Council) has made a great deal of effort to add charm into the design of the expanded downtown area.  I know that the spider on the side of the main parking garage is not a piece of art that I would have chosen, but… Art is art and it stimulates conversation, especially if one lives in tarantula country and they are trying to encourage visitors to their festivals and street fairs.

So, we had a City Council meeting this week, and there was some incredible whining on facebook about the “immigrant” problem, about whether or not Selectmen (members of the council) are “real” Americans, and who is related to who.

On top of that, there was some whining about out of control housing expansions, parking, and whines of “who are all these people entering our town???”.  Things along the lines of, “I have lived here 13 years…”  Craziness.

Sad.

In addition to all of this, the homeless encampments have been springing up along Monterey Road, as people desperate to stay safe and dry in the Winter storms are doing what they can to survive.

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If our own City Council and citizens won’t address the issue of affordability to keep people off the street, who will?

I am struggling to stay afloat, to keep my sh*t together and pay what I owe while taking care of myself.  While I’ve done an amazing job since December (it’s been like magic, how my little bit of $ have stretched to get me through the month), I am really struggling with despair over how much my fellow citizens just want everyone who is not them to hurry up and die or fade away.

If we won’t help each other, then why the heck are we here?

I know the spider cost $275k.  Ridiculous, I agree.  But, it’s an investment in the future.  It doesn’t mean that we don’t care about each other.  It doesn’t mean that we aren’t helping the homeless and impoverished.

Rather, it means that we have hope for the future.  That we are continuing to invest in things for tomorrow, while not ignoring what’s happening around us today.

The whiners drive me crazy, as nothing is every “perfect” enough for them, while they sit in their clean homes with their running water and warmth, planning their vacations, and just want any expenditure that doesn’t specifically benefit them to be cut.

Sad.  Because the benefits you cut today for others may be the benefits that you need tomorrow for yourself.  Even if it’s only from self-interest, can y’all stop whining for 5 minutes while we take care of each other?  The person you help today may be the person who gives back and helps you tomorrow…

Just sayin’

Bromides

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I’ve been really clear that I don’t believe, “Everything happens for a reason”.  I’m unable to trust in a higher power, because I see no rationality in the world.

Sh*t happens.

Sh*t happens, and I’m on cleanup duty.

The biggest challenge I have with the whole “higher power” rationality is that viewpoint means that children with cancer were either meant to suffer, or they did something wrong in a former life.

Seriously?  Think about that, “they did something wrong in a former life”.  If you imply that atonement is possible, why must a person suffer?  If they are truly remorseful, then why does torture need to be added into their lives as part of “atonement”?

I say this with all seriousness because I’ve struggled with this topic my entire life.  I spent most of the first 5 years of my life in a hospital, either recovering from yet another bout of pneumonia, or recovering from a surgery.  I lived with death every day, as many of the children around me didn’t make it home after every course of desperate treatment.

So, I came to the realization at a very young age (after Vatican II, when they changed all the statuary in my church to make them beige and ugly) that what we believe are the lies we tell ourselves in order to get through.

I’ve never been much of a fan of lies.  I’m wicked big on fantasy.  Werewolves.  Vampires.  Aliens.  Those are clearly fantasy and lies, but I don’t mind them as they are proud of what they are.  Escapism.

The whole Church thing bothers me, though, because the Church I grew up in lies.  It gives no comfort to desperate mothers, wanting last rites while she buries yet another unborn child.  It claims its children for its pedophelia priests, looking the other way and valuing the priests over the innocents sacrificed in the name of “greater good”.

I had a wonderful older brother, “Golden Boy”, who died a horrible death from brain cancer.  He wasn’t in any pain that he complained of.  He wasn’t an evil person.  In fact, he was one of the best people I know.  And that’s saying a lot, because we were siblings.  Siblings know where ALL your bodies are buried, and he had none.

He had a wonderful wife.  2 great sons.  He gave back to his community.  He was a hockey coach.  He gave to the troops.  On top of all of this, he enjoyed his life.  He traveled the world with his wife and sons.  He truly enjoyed molding young skills, getting them to find their own pride in their bodies abilities to slap a goal, to mow the lawn, to waterski.

However, if I’m to believe the bromide that “everything happens for a reason”, it flies in the face of everything I *know* to be true.  Nonsense.  Things are what they appear to be, and not what some homily says they must be.  Because to believe otherwise tilt’s the world on its axis.

Someone got on my last nerve this morning by sending me yet another homily about how wonderful their God is, and how I must be thankful for every day on this world and praise his name.

Really?  I’m sitting here trying to make my life work, juggling the need to stay warm in the Winter against the need to eat and pay for my medicines, and then yesterday’s windstorm caused damage to my house.

Damage that I don’t know how I’m going to pay to repair.

Yes, its shallow to focus on my own petty issues when there are people suffering in the world.  However, I can’t help anyone else unless or until I have my own act together.  When things are going well, I help.  When things are sucky, I try not to do any damage.  That’s about the extent of my thinking on the whole “philosophy of life” issue.

As for the damage to my home, if I believed in bromides then I’d know that this particular act of capriciousness was God reaching out to smite me because I’m challenging the status quo.

Alrighty then.

Believe whatever you want.  I still have to make my life work as I juggle lawyers, withheld funds, restricted 401Ks, get my taxes done, and hope that I *will* make it to my final bucket list trip later this year.

I’m struggling on whether or not to cancel this trip, or continue to bet the house in the hope that my various pending pools of money will arrive in time to keep me from screwing things up worse than they are.  A bromide isn’t going to do squat for that.

 

 

Taxes and Disability

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I love Jeff Leedy’s work.  When I’m down, he makes me laugh.  I’ve bought a couple of his prints over the years, but at this time of the year I always come back to his taxes humor.

Today’s good news is that I finally heard back from the doctor who will write me an actual prescription for swim classes so that I have that to backup the tax deduction I have available if the doctor makes it official.  While it’s been in my chart, and that should be enough for the IRS, the regulations are written so specifically that I wrote to beg for an actual Rx.

Ask, and it shall be granted.  Yes !  Something is going right today !

Stress Eating

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One of the key things about being a resilient personality is the fact that I keep circling around an issue.

However, when I’m stressed I also eat.  Tell me that I may not make it through the month with enough foods, medicine and heat?  Yea, I eat.  Very counter-productive.

So, to save money, you know I end up making all those foods that are affordable, but which don’t go well with my diabetes issue, and which solve nothing while adding to my challenges.  (Noodles, rice, breads).

This Winter, as I’ve struggled to stay healthy and get by, I’ve also put on about 11 pounds.  Most of it’s from being too tired and cold to move, and some of it’s from the rain keeping me indoors.  Plus no funds to pay for the YMCA medicine to keep me exercising.

It may not sound like much, “11 pounds”, but it’s huge when one is normally between 195 and 205 (200 lbs is my normal weight), and I’m finding that my weight is now steadily at 207 to 211.

Cooking all Winter to help keep the house warm is not helping my diet.  I did try adding Chinese 5 spice to my last order of sugar cookies (since I found that I did NOT have gingerbread cookie mix in the house), and I put cinnamon on the outside of the cookie in a (small) effort to keep the bad blood sugar mojo down.  Yes, the anise in the 5 spice mix ensures that I don’t eat that many, so it’s a good thing, but I’m still eating.

However, with all my examination of my blood sugar in my effort to test at least once a day, I’ve now found that my test meter clock is messed up.  I tested around 10am this morning, and my meter says that I tested at 5:15 am.  And that today is the 7th of February and not the 10th.  As if !

I need to get 5,001 things done today, as I have a show tomorrow, yet here I am messing around with yet another time waster.  Disorganized, much?

Time to step away from the computer and concentrate on the things that I can control – errands, banking, post office stuff.

Everything else can wait until later to be addressed.

 

Burning Bridges

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I don’t do my best when I’m frustrated.

The stupidest things I’ve ever done in life have happened when I’m tired, hungry or frustrated.

I don’t know whether it’s part of my ADHD brain and learned coping skills, or I just lack the discipline to put up with things that are “supposedly” unchangeable.

I do know that I have about a years’ worth of tolerance for legal b.s. before I begin to lose my mind.  I guess I have reached that point with my disability lawsuit and the lawyer currently running my case.

I’m sitting here, worried about covering my medicines, worried about covering my housing expenses and affording food, and hoping that money which is due to to me (profit sharing, RSU shares, etc.) will begin arriving next month.  How to survive until next month is the biggest issue, though.  Especially if the money doesn’t arrive.

So, I wrote the lawyer asking questions about an update to my case (now not likely to have any kind of updated information until mid-April or later).  I also asked about signing up under the “Ticket to Work” program promoted by SSDI to see if there was a way I could earn some money, and find a way to offset some of my uncovered expenses.

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I, of course, got back the usual b.s. about, “If you want to quit your case…” and, “You cannot work”.  No real answer to the question I asked about timelines and survival, beyond stating that they didn’t have any hope of making any kind of progress until April (at the soonest), and advising me to not do anything until I heard back from the lawyer.

Yes, the only one I regularly interact with is the paralegal.  Lovely woman, but frustrating when one is in a holding pattern and survival is on the line.

So, I’m waiting to hear from the lawyer with an *sswhipping “official” letter next, since her initial response was so unhappy.

Why do I even bother to try and make sense of being on disability?

It’s clear that the powers-that-be in this country want us all to hurry up and die.  Leaving me on a minimal income, without leaving enough money to both eat and pay for my meds plus shelter myself from the weather, as that rational outlook seems to be too much to ask.

While we do have the “Death With Dignity” act in California, supposedly in support of euthanasia, you still have to have it all legally documented (maybe $3k to $5k), and it has to be done well before you actually want to exercise that right.  Sad.  Spending more money on the issue isn’t going to improve or change the eventual outcome.

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