About sixteen years ago, I met him for the first time. My trainwreck sibling brought home this adorable puppy he had no business adopting because he had not one thing in his life that wasn’t a mess. I was furious at my sibling – he didn’t even take care of himself, how could he drag
Read More
March 9, 2015
I think about homelessness a lot more than your average middle-class partnered person might.
We’re living my financial high point right now, why can I still taste tomatoey canned sardines and rice porridge thinned with water to stretch? True, the flip side might be that it’s all downhill from here but it’s also true that I’ve not been a slim paycheck away from Final Warning-stamped bills, rent going overdue, and making just the interest on the credit card bills for almost a decade now. Prosperity, not poverty, should be the reflex.
We weren’t always a nickel toss from disaster but we lived in the fire swamp, a wander into the lightning sandpit wasn’t inconceivable. In those days, due dates were more like suggestions. Good thing I didn’t apply that to homework or library books! My nine year old brain didn’t recognize the signs of juggling bills to avoid overdrafts, I just obediently post-dated the checks as instructed. Well trained not to ask questions, it was another 8 or 9 years before I grasped what that said about our finances.
Young adulthood was equally precarious. There’s a big gap in my memory of my college years because all I did was work, school, and take care of Mom. After hiding her diagnoses for years, she’d finally admitted she had serious health problems and when I was 17, it became my second job to look after her. (That had a lot to do with why I feel responsible for decisions made long before I was a competent adult.)
My parents faced incredible challenges immigrating to America and in some ways, there was absolutely nothing more that I could do for them.
I can’t help but feel for them. They struggled in a time where the kinds of debt reduction and financial information we now have access to simply didn’t exist. Before the internet? It truly seemed like the Information Dark Ages. If the internet and money blogs and forums were a thing when I was 13, rather than 17, I can’t help but think maybe I could have made a real difference.
But that is exactly why I am so fully aware of the consequences of failure.
Questions about homelessness and what we do about it, posed in SaverSpender’s recent post, haunt me. What more can I do?
It’s a seriously personal question as I do my level best to keep my immediate family off the streets. I am their last resort, the last one with any dignity or safety, that is. It’s neither an easy or a painless task, and I do get frustrated with failures to communicate or comply. But it still startles me when people feel it’s appropriate to respond, in the face of one frustration or another with my family, that they ought to learn their lesson, that Dad ought to be left to suffer the consequences of his actions.
Perhaps on the face of it, that is the most logical answer. But is that really so simple? Is it that cut and dried as a human being to say that another human, older and unable to get hired back into the workforce, should be taught that the lesson for irritating me is to lose basics like heat, water, and shelter? What lesson is that to to be teaching someone at this stage of life? And what kind of person does that make me if I’m willing to throw him out on the street? Not that I spend a lot of time mirror-gazing, but it would even more drastically reduce how much I could bear the sight of myself.
I’ve observed that not even my oldest friends, though incredibly conservative politically, have ever responded to my sighs over the situation that the “obvious” answer is to do anything but continue to treat my family with grace and take care of myself. Never have they suggested that I ought to abandon my family in some moral object lesson.
“There but for the grace of God go I” is always in my periphery. I’m chronically ill but cannot afford to rest on my laurels because I am their last line of defense. And my responsibility grows with each day.
I don’t know what the answer to homelessness is, other than making sure no one I care for has to endure it.
March 6, 2015
Change from Jan 2015: 3.8% increase
On Money
I’m working away at Swagbucks to earn Amazon money for household, Little Bean, and dog things we need. Feel free to join using my referral link if you like!
***
Since I’m down to half-salary, I’ve stopped my contributions to savings. Our cash flow is much tighter but we’re still sending some of PiC’s salary to savings so we haven’t lost all momentum.
***
My 2014 IRA contribution needs to come out of savings – boo.
***
It’s been challenging making the time to stay on top of the everyday stuff like our finances, writing, cooking. Short month, short notes!
*** (more…)
March 4, 2015
This post is part of Women’s Money Week.
I have countless birth announcement emails from friends. They’re all cuddling their freshly born babies, sleek hair framing a tired but smiling face (is that MAKEUP??), painted nails, even classy jewelry.
Me? If I wasn’t already flattened I’d have collapsed into a pile of jelly legged oh my GOD is that over, really? face haloed by a wild nest of hair that could substitute for Medusa’s wig. Hands clasping the new LB that had been too swollen to wear my rings for months. Elegant, not so much. But realistic.
~~~
Our whole experience was surreal. Normal people race to the hospital when they’re told to come in. Us? Panic-repack and take hours to leave the house. Our hospital bag was already 95% completed the week before but going into labor triggered a squirrel-like need to have everything. In the end we hauled enough stuff to camp for five days and barely touched any of it.
Our doctor was right, we only needed one change of clothes each. There was no time or brain or energy to shower or change daily, and no point. We weren’t getting visitors and I had nowhere to be presentable. My job was recovering/pain management and taking care of Little Bean. I lived in hospital gowns and PiC was in charge of everything I couldn’t do: making phone calls, walk-soothing LB, changing diapers, leaving the room ever.
We went in exhausted and hungry so the conditions were sub-optimal. We did have a birth plan but only stuck to maybe 10% of it. That wasn’t a bad thing, they warn that might happen, but it was a little unsettling.
I wanted to manage without an epidural because frankly a needle in the spine and holding still during contractions just sounds like a recipe for disaster but the progression of labor was 0 to 60 once things got started so that intention went out the window. Never mind, I live in enough pain daily not to need to justify myself taking any pain management as needed, so I did, and I think it’s what enabled us to make it to the end, safely.
There were lots of times we felt like we were improvising throughout the long hours in an unfamiliar place and with only each other to lean on. In the end, I still think that was a good thing. I don’t like feeling crowded or too much unsolicited input, it often gets in the way of my best decisions and work. I needed everyone but PiC to just shut up with their “encouragement” during actual labor and I hurt one person’s feelings a bit asking her to not cheerlead because it was so distracting.
After many hours of pain and work, Little Bean joined us in the outside world, rather grumpily. Little did ze know that further indignities were to come: a bath, medications, ID bracelet, the works.
~~~
Hospital Costs: delivery, $150
We have an HMO which is considered either bottom or middle tier insurance from our employer, but I was really happy with it for prenatal and labor& delivery care. This isn’t the case for everyone, I’ve heard so many bad birth stories I was rather nervous, so we’re really grateful how it all turned out.
Our copay covered a three day stay in the hospital, all my meals, a celebratory meal for PiC, and all the medication and medical supplies I or Little Bean needed. Also diapers, wipes, a few other odds and ends.
I shared most meals with PiC as it was a pain for him to leave our room often. I ordered the maximum calories allowed and supplemented with our own snacks. Our nurses brought us extra food and drink as well because it seemed like I was always hungry or thirsty at odd hours even though I hadn’t begun breastfeeding in earnest.
The staff were pretty great. The residents mainly stayed out of the way and treated us like actual people, the nurses were on top of just about everything we needed. One nurse was kind of a jerk but that was at the end of her shift so we didn’t have time to care. Despite arriving at a hospital we’d never had time to tour, we felt it was the best stay we could have asked for.
Discharge costs: meds and supplies, ~$300
Our last nurse loaded us up with all the supplies we could ask for but the projected 4-6 weeks of recovery meant we still had to get refills of everything. Damn good thing I figured out the FSA thing.
Some of the stuff that was covered:
Prescription pain meds,
Maxi pads,
cold compresses,
A donut cushion for my traumatized underside,
Topical witch hazel spray and pads.
~~~
We came home exhausted and elated, with a month of leave planned together with our newest family member, and looking forward to introducing hir to our second “baby”.
March 2, 2015
This post is part of Women’s Money Week.
SDI, FMLA, PFL, oh my!
PiC and I are eligible for protected leave in various forms after Little Bean’s birth, not all the same, and not all equal, so it was a bit of a maze figuring it all out.
PiC is entitled to six weeks of unpaid, job-protected leave under FMLA (Family and Medical Leave Act), and qualifies under the birth of a child. This has to be taken within one year of birth.
His employer also pays for an amazing six weeks of parental leave to be taken during the year following the child’s birth.
I was not eligible for this but, as the child-bearer, I can take 6 weeks of partially paid, job-protected leave under CA’s SDI (state disability insurance) after birth. Pregnancy is considered a disability for this purpose and considering how you feel in the last few weeks, yeah, that’s justifiable. I could (should) also have taken off 4 weeks prior to our expected due date, and would have liked to, but I wasn’t willing to go to essentially half pay a month in advance. Chalk that up to my neuroses … if there was going to be a next time, I’d probably try to plan better so I could take that time.
Half pay was a hard pill to swallow as we stare down the barrel of childcare and various costs associated with a brand new human.
Quick Facts about FMLA
- FMLA is unpaid, job-protected leave for specified family and medical reasons
- You get 12 workweeks of leave in a 12-month period
- Your employer is only required to comply if they employ 50 or more employees.
Quick Facts about SDI
- You cannot apply for SDI until you have stopped earning wages. Therefore if you don’t go on leave until the last minute, you’ll have to wrangle paperwork when it’s least convenient: squalling baby, sleep fogged brain, fiddling with a state administered website. That’s one reason to go on leave earlier if you can afford it!
California now issues payments via an EDD Debit card instead of checks. I hated this until I realized this is really good for the unbanked – if you don’t have a bank account, getting a check from EDD would be another barrier to receiving much needed income.
Following his FMLA and my SDI leaves, taken concurrently, we are both eligible to take an additional six weeks of PFL (Paid Family Leave)
Quick Facts about PFL
- You can roll directly over from an SDI claim to a PFL claim.
- Covers individuals who take time off of work to care for a seriously ill child, spouse, parent, or registered domestic partner, or to bond with a new child.
- This is also partially paid at 55% for six weeks.
Because we don’t have a great plan for childcare (that is a whole other post/conversation) once our leaves are up and we don’t have much in the way of a support network, we have to be careful to take enough leave to recover from the whole ordeal of childbirth and bringing a new baby home but not so much that we’re out of luck later on if we have to deal with health problems.
We had a good first well baby visit, for which we are eternally thankful, but you never know what tomorrow may bring.
At the same time, these first weeks and months are precious. We don’t know if we’ll do this again so we are trying to be present for this experience, the good, bad, and poopy. Paid leave makes it possible to actually do that: support each other, get to know how best to care for our new family, establish new routines, and actually recover. There’s a darn good reason sleep deprivation is a torture tactic, most of us do not truly function well on the couple hours of sleep that a newborn allows!
Ultimately, I think it just makes so much more sense to have some kind of parental leave policy that gives new parents the space they need to regroup. For us, I would feel like we can return to work with a renewed sense of purpose.
For other states, have a look at Babygate.
February 28, 2015
I started this piece with Katie months ago for @PhDisabled but it’s Rare Disease Day so it is fitting that I pull it together now.
~ ~ ~
It’s unlikely that you’ll have said these things since my usual readers are unfailingly thoughtful and kind but you might have heard some of them, and perhaps in the context in which they’re delivered to us.
Most days, I have a sense of humor. Wicked, yes. Pointed, oh yes. I do find the funny and the irony and the chuckle in most things so it’s often easy to shrug off another microaggression equivalent of failed expressions of concern. Most days. Then there are the days when @PhDisabled starts a conversation and reminds me of those thickly bitter moments that Katie (dealing with her own serious medical issues) and I scowl over.
What not to say to people with chronic illness:
Some of us occasionally express frustrations with living, isolated, with unremitting pain. Surprised? These people were.
You should try massage.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.
You should try acupuncture.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.
You should try this! It’s this healing water that your uncle’s mom’s cousin’s horse’s trainer’s sister drank once and it cured her cancer.
Revanche: Because any liquid can cure cancer. Also, I don’t have cancer. Just FYI.
Take home this plant, chew one leaf a day, it’ll make it better! It can’t hurt.
Revanche: It CAN HURT. You don’t even know what this plant IS.
You should rest more.
Revanche: More than 20 hours a day? How much more?
You should try vitamin B12.
Katie: Where did you get your medical degree again?
Revanche: Vitamins aren’t medication!
I could get hit by a car and die any day.
Katie: That really is the same thing as having a 66% chance of brain bleeding and being permanently disabled! Thanks for the perspective!
Revanche: Would you, please? But seriously, what possesses you to say such a thing?
You need to push through the pain.
Katie: Said only by people who have never experienced migraines.
You’re so lucky! I wish I could lay in bed all day!
Katie: You left out “in excruciating pain.”
Revanche: “Could” is not the same as “have to”. For the love of …
Must be nice to only fill your car with gas once every couple of months.
Katie: Oh, yeah. Being stuck inside, unable to leave my house because of pain is a regular hootenanny!
Revanche: That’s how you look on the bright side? Unrelenting pain, one hand. Saving on gas money, other hand!
You have to be positive. If you believe this medicine will work, it will.
Katie: So that’s my problem!
Revanche: starts cursing in Dwarfish
But you look fine!
Katie: I’m sorry chronic migraines and brain masses don’t manifest like a broken leg in a cast. I promise I feel 400 times worse than I look.
Revanche: This isn’t the medical version of Dorian Gray’s portrait, we’re not hiding the imagery in the closet.
Said sarcastically: Why wouldn’t people want to be around you? You’re just a ball of sunshine!
Katie: I have enough anxiety about being the cheerful chronically ill person without you adding to it, thanks.
Your depression and suicidalism are just like the time I had a really bad cough, and I kinda sorta wished a car would run me over just so the coughing would stop.
Katie: Glad I’m not alone. Also, nope.
Revanche: Your face is like a really bad cough.
It could be worse! / You think this is bad? Just wait until….
Katie: As if chronically ill people don’t spend enough time doubting themselves, feeling like they’re exaggerating their pain, feeling selfish for even talking about their pain. Again, thanks for the perspective.
Revanche: STOP IT. As if it being worse isn’t among our worst nightmares, why the hell would you try to make us catastrophize? That’s NOT helpful. I also hate hearing this about anything not medical related for the same reasons.
If you’d go outside in the sun more often, you wouldn’t be so depressed. It must be God’s will./God doesn’t give you more than you can handle./Appreciate the roses and the thorns.
Katie: Shhhhh, stop talking now.
Stop thinking about it so much.
Katie: Okay, don’t breathe air.
Revanche: Don’t blink. Just stop blinking. Right now.
I think you underestimate yourself.
Katie: Trust me. I know my physical limitations better than you do.
Revanche: *growl*
Why don’t you … [insert their idea of treatment here]?
Revanche: I’m actually not obligated to justify my healthcare to you. Thanks.
What to say instead:
After a long spate of patronizing comments, I prefer people just keep their mouths shut, forever, but then again, there are some people who get it right.
Absolutely nothing.
Katie: Most times the only thing I need is an ear, an open mind, and a hug. Letting me talk about my fears and my experiences means so much more than anything you could say.
I don’t know what to say, but I think of you often and I love you.
Katie: Again, just knowing that you’re there for support is enough. I already know you don’t have answers. I’m not talking to you because I want you to solve my problems or cure my illness.
It’s okay if you need to cry.
Katie: Probably the hardest part of my life since my diagnosis has been the feeling that I need to always be The Inspirational Chronically Ill Person. Knowing that I can let my guard down around you, speak honestly about what I’m feeling, and cry if I need to… Well, that’s everything.
Revanche: And I may not believe you but it does help to hear it.
I’m going to the store tomorrow. What can I bring you?/I’m bringing dinner over on Wednesday. Would you prefer chicken or fish?
Katie: All too often I hear “Call me if you need anything.” Whether it’s due to pride or the cynical thought that no one actually means what they say, I never call. If you know a loved one is homebound and unable to cook or perform basic tasks, offer to help them by making a plan to cook for them or run their errands.
Revanche: “Call me if ..” has proven over and over to be a verbal crutch. The people who mean it ask for concrete details like “Do you have enough food for the week?” or “Would it help if I [did this or that thing]?” If I think you’re sincere, then I will tell the truth. If it just seems like a conversational throwaway as it often is, I’ll just struggle on with my day because I’d rather skip the disappointment when the follow-through falls flat.
I’d love to spend time with you, would you be up for it [this day/time] ? (And BE ON TIME. And don’t make a mess for me to clean up!)
I’d like to see you this weekend, are you up for a visitor? I’ll bring lunch.
Revanche: Assume that I would also like to spend time with you but that it’s possible I won’t be able to even sit up. One of the most frustrating things is the thoughtlessness of those who spout how much they miss me but can’t be bothered to think through the impact of their social visit where they show up late, strew things about as they sift through the house as if bored, and leave things in utter disarray.
Would you like to take the stairs or the elevator? (And respect my answer.)
Revanche: Being aware of the difference between taking a flight of stairs vs the elevator and offering the choice tells me that you understand there are things, normal things that normal people do, that I can’t always do. Without making a big deal out of it, offering the choice is an enormous relief when I can’t bring myself to remind people for the jillionth time that I can’t do everything they can.
And don’t get me started on the patronizing fatheads who think it’s their life mission to help everyone they deem disabled whether or not that help is needed or welcome.
How are you feeling today?
Revanche: There’s a subtle, but significant, difference between “how are you?” and the more specific phrasing.
To err is human …
We know that people simply don’t know how to relate to those of us who live in constant, unremitting pain and we can forgive the occasional gaffe. It’s just useful perspective to know that for every one foot in mouth moment you observe, it’s about the 300th time we’ve heard that comment. Maybe just that week. We’re already exhausted, any bit of consideration and thoughtfulness is appreciated.
Related reading:
Illness Etiquette
A Storify: Discussing ‘On Pain & Celebration’
February 25, 2015
Long have we been talking about going to Italy, long has it been out of reach. Until we recently made it happen.
I wanted to take a leisurely time to sightsee in Florence and the Cinque Terre region, but our time constraints put paid to that notion. We did a bit of criss-crossing through the country to keep it interesting instead.
We skipped the rental Ferrari experience, instead opting to put the Italian rail system through their paces for all the big hauls. I bargain hunted for train tickets, carefully mapping each stage of our journey so we could buy tickets on discount sites before departure. Cheaper AND nicer trains = two thumbs up (but not that cheap, it still cost almost $300 for the two of us just for that part of transit).
The rides varied from excellent to terrible.
Italo, privately owned rail: Ferrari inspired design, air conditioned cars with free WiFi, ability to reserve seats and second class was as good as first from what I could tell. SUPER fast. Bonus: space agey bathrooms! Clean and sleek.
Frecciarossa, government owned rail: standard type commuter design, air conditioned cars with free WiFi, comfortable and relatively quiet. Didn’t use the bathroom so not sure how that was.
Regional rail: terrible. Just terrible. We were crammed like sardines in a botulism ridden tin, our car had no air conditioning for a 2+ hour ride in 80+ degree heat. People were sitting on the stairs in an effort to avoid passing out. Bonus: we survived. We saved a lot of money as these were the cheapest of the lot but I would have been happy to pay the $200 for a private car had I expected that. (Then again… I’m notoriously cheap sometimes…)
So obviously we compromised where we didn’t care much about the thing to save money but NOT on food. I simply wasn’t going to make the effort to go on such a big trip while uncomfortable AND deprive myself. We brought a lot of snacks for travel days and lunches, planning to have breakfast at our hotels where they were providing breakfast without extra cost, and eat dinner out.
Experience-wise, that was the best choice I think, as I picked places with pretty fantastic breakfast spreads.
We, not even kidding, breakfasted for three hours one morning! We might have looked like gauche and greedy Americans but I never got that feeling from the amazing and so-very- friendly breakfast servers. My money is on they were humoring the then visibly pregnant lady. 🙂 By the time we left, we had bonded with Maria who was super excited about LB and had to give us hugs before we left. We were both disappointed that we wouldn’t see each other (and that glorious breakfast!) the next day.
We got to know some awesome restauranteurs of smaller establishments, and were repeat diners at the best of them. Dinner was a serious business. 🙂 I didn’t enjoy any wine but I rarely care about that. I did, however, feel deprived over the prosciutto! Still: pastas, fresh fish, pastries, pies, random “fast food”, pizza … So. Good. So very good.
Travel Costs
We managed to cash flow both trips even though we spent more than annually budgeted for travel back in 2013 and a also bit more, well, not recklessly but more freely than usual. I chalked it up to the Pregnancy and “when are we going to do this again?” Tax.
Like the London trip, using our biggest pot of miles, British Airways, was pointless.
I did redeem a truckload of Chase Rewards points. I had the option of using them to book flights, hotels and car rentals directly for an extra 20% in points value but none of their options were any good for our destinations. We weren’t driving and none of the areas we planned to stay had anything useful on the list of redemption hotels.
The best value was booking lower cost, family-run hotels, then redeeming the points for cash to pay for them. All told, we cashed in enough points for about a thousand dollars which nicely defrayed the cost. And we earned yet more credit card points for charging the hotel bills – the circle of rewards points life!
We also used a big whack of our Starwood points for two luxury hotels priced at remarkably low redemption costs for the category rankings. I’ve never stayed at a Category 7 hotel and I’m not sure if we will again any time soon.
That was about twelve hundred dollars of value. If we didn’t pay with points, though, I’m sure we would have just stayed at cheaper hotels.
Fancy: that is indeed CNN you see in the television built into the mirror.
The weather was miserable for much of the trip, going from an unbearable sweltering to a grey gloom and downpour. Packing extra lightly meant I was ill prepared for both extremes, and even more so because I had put on another few pounds before leaving. I never knew what a difference a few pounds around the waistline made and I’ll never take my reasonably stable weight for granted again, if that ever comes back.
February 24, 2015
My baseline for “tolerable pain” has inched up yet again. At least half my body is always aching, on fire, swollen, immobilized or whatever fresh indignity has dropped in for a visit.
But I’m living on pain meds just to stay at that baseline. When “not screaming in excruciating pain” is your new “I’m OK”, you start questioning life / choices.
Getting up to 4 hours of sleep per 24 hours, in half and one hour increments feels amazing.
I’m forcing myself to drink as much water as I can hold. Since having LB, and pain shooting up as dramatically as a game winning ball getting spiked, I’m struggling to eat and drink normally. I even made up a little ditty about water to remind myself but I’ve already forgotten the song.
My fingers were dislocated this week and apparently this isn’t surprising to my doctor. Hmm. They just keep on popping out everyday now. Worry when they turn blue, she says. Well….. OK…. I will.
I’ve been alternating between a headache or nausea for days. What’s up with that?
I’m really impatient with my slow healing. Like I needed a whole other heap of pain to make life interesting.
I’m even more impatient with my brain fog. It’s frustrating that I can’t comprehend the numbers in a brief accounting sheet, that half the emails I read have to be saved for later rereading. And re-rereading.
Seamus needs room to play and I hate that we don’t have a yard for him. Expensive way to be able to toss a ball for the dog but it makes me want a house and respectable yard for him. Most days I’m shuffling by inches so PiC does all the walks and more than we’d like are more functional walks than fun. We’d like to do better by him. And since I can’t take him to the park… A park should come to us. In the form of a house and yard.
On the other hand, while I wouldn’t want to buy a house in our current area, I can appreciate the convenience of the location. We have a fair number of grocery stores and food choices, and a decent array of transit. We’re not a good place to visit but it’s a decent starting point to get to somewhere interesting if you know what I mean.
