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
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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.
February 18, 2015
Is that it’s rarely ever useful to anyone unless maybe you’re a supervillain who relies on manipulating people and jealousy is a great blinder of common sense and makes people somewhat predictable. That’s not often the case, though, is it?
Lately I’ve been treated to a litany of “I’m so jealous!” from an acquaintance about the pregnancy and then arrival of Little Bean and it’s exasperating.
LB’s pretty cute, sure, but that’s not what the acquaintance, let’s call her A, was talking about. She was talking about the fact that we made the decision to conceive and it happened. But she can’t honestly think we got pregnant to spite her, can she?
I don’t even know what to say in response that wouldn’t be rude and snarky, and for once, “cutting” isn’t what I want to go for here. (Tonya’s perfectionism post suggests an answer though: no one’s life is perfect, so this comes at its own cost …)
Mind, I’m aware I’m incredibly lucky in some respects. Fantastic husband. Some wonderfully supportive friends. A few amazing family members. Seamus is the Mary Poppins of dogs: practically perfect in every way. And now a cute baby.
This doesn’t exist in a vacuum though. I didn’t just fall into a good-luck pit and come up Milhouse. I came by this honestly and worked hard, making the most of whatever luck came about, good or bad. I take nothing for granted. It chafes to keep hearing “you’re so lucky”. Yes, there’s joy but it’s 98% work and sacrifice. It’s weird enough being lectured by every parent off the street about how wonderful parenting is, it’s even stranger to hear about the magic of having kids from someone who doesn’t have them yet because she’s ” not ready to get fat and deal with the stuff you did”. (I promise that “getting fat” was the least of my pregnancy problems!)
My husband is naturally head and shoulders above the average husband in my estimation but he also has to be. He has to pick up the slack created by my chronic diseases that strike as and when it pleases. He has to accept that much of the time I’ll function at 40% of the capacity of normal people. He has to work around my inability to ask for or accept help like a normal human sometimes and not resent my turning into a resentful prickly cactus when I’m feeling extra useless and worthless for not being able to feed myself or stand up under my own power.
My closest friends understand me, misanthropic introvertness and all, and are wonderful company but none of them are in the Bay Area. None could drop by to lend a hand when I’m bedridden, I can’t run over to give them a hug on a bad day or bring them food or keep them company when they’re lonely. At best we’re an 8 hour drive or a 5 hour flight away from each other so the usual to and fro of friendship has to be adapted to long distance.
Cute child? Yep, I think ze is adorable. But LB hardly sleeps and screams like a pair of dueling banshees. I love the kid but no one would mistake hir for a fashion accessory or this experience a walk in the park. Ze has strong opinions and well developed lungs with which to express them.
And this person is familiar with the severity of my health issues, the huge toll I pay for this otherwise enjoyable life. My professional skills and personal wealth aren’t worth much in the face of debilitating illness. You can’t buy the absence of pain, you can’t negotiate away crap health. You don’t get to cherry pick the good stuff in life and leave the bad so what’s the point of envying the one thing in isolation?
Maybe this acquaintance is just trying to (awkwardly!!) pay some sort of compliment suggesting that my life too is worthy of envy, passing over some validation to the hermit like a communal pipe around the campfire. In a odd way, that could make sense as she’s an extremely fit semi-jetsetter type who travels internationally regularly and on a whim. Her life adventures are neat, they’re things I couldn’t do anymore or maybe wouldn’t choose to do (snorkeling? never again!),. But I don’t need to covet cool things to admire them and especially don’t seek validation.
The only thing anyone has that I’d want is great health. For anything else, I could get off my duff and do something about getting some of that awesome for myself.
As I write this, Seamus is sitting on my foot soliciting attention, offering a pawshake in exchange for a real scratch. We know to ask for what we want in this family.
Bottom line: I’m happy enough with my lot in life and what I’m doing that I can be happy for others and their good fortune. That takes nothing away from anyone.
Is this a familiar phenomenon to anyone else? Do you have an envious friend or acquaintance?
February 16, 2015
Effective Jan. 1, 2011, distributions from health FSAs and HRAs will be allowed to reimburse the cost of over-the-counter medicines or drugs only if they are purchased with a prescription.
This change to the FSA/HRA rules was a real downer.
I use quite a lot of OTC stuff for my chronic pain and it’s not cheap. Thermacare heating pads, for example, are great and last 8-12 hours but a pack of two or three costs anywhere from $10-26. A week of back or shoulder pain could cost $75 just to keep heat on, and it’s rare for the pain to be confined to a single area. Usually it’s one half of the body, right or left side.
To a more astute person, there is an obvious solution so I confess, I totally missed the obvious here.
OTC medications aren’t allowable unless you have a prescription for them. I read that as: if the pharmacy didn’t fill it as a prescription then it wasn’t eligible. I was wrong.
I’ve been doing this with my massages for the chronic pain, but it didn’t occur to me til recently that the same thing would work for the numerous OTC items I’ve had to buy for prenatal and pregnancy related conditions: the letter of medical necessity!
If it’s for any kind of treatment that your doctor is aware of, or if your doctor is happy to fulfill such requests, then all you’ve got to do is ask for a letter stating that these items are being used for treatment.
Make it really easy for your doctor to fill in a form letter by providing the list of OTC meds and send a copy of that letter in with your receipts.
We’ve spent a significant amount on OTC meds and supplies during this pregnancy, it was awesome claiming it back.
Go forth, my friends, and save your effective tax rate in OTC FSA costs!
February 11, 2015
We have a new puppy!
No, I’m kidding. No we don’t. It’s much worse than that. 😉
It was not the smoothest process ever but we’ve brought home our Little Bean, making us a family of four!
We haven’t slept a full night since. We like hir though and there are no returns so…. 😉
Seriously, ze looked very generic “baby” at birth but personality started shining through very quickly and we can tell from whom certain traits were inherited. It makes it hard to remember that ze is actually only moving reflexively and not intentionally when a hand is laid on ours or, more frequently, reaches out and smacks us across our faces. Smiles are only because of gas or a pending epic poo.
We continue to hope ze won the genetic lottery in the big things like good health, not being allergic to furry creatures, tendencies to be happier than not, and a hearty enjoyment of accomplishing things.
Family Integration: people reminded us several times to bring home something with hir smell on it so Seamus could get used to the scent and idea. We knew this but the circumstances were such that we simply couldn’t manage it so their first introduction was under some of the least auspicious conditions (or would have been with any other dog).
Ze was squeaking away in hir car seat while we loaded up the car and he went to investigate, looking at me with no little concern when he spotted hir. Oblivious, ze continued squeaking. I kept a close eye on him but, as usual, had no reason to worry. He eagerly sniffed hir from head to toe, not touching or prodding, just sniffing an inch or two away. Seamus, one of the smartest, gentlest dogs I’ve ever met, he who usually ignores tiny humans no matter how loud or aggravating, was now very interested in this critter.
90 seconds later, he nodded. Ze was family. He gave hir the tiniest, gentlest kiss I’ve ever seen from any dog, great or small, a newborn sized kiss, and has watched over hir ever since. If we’re too slow to change a diaper and/or stop the crying he wants to know the reason why. If we leave hir snugged up in hir little chair, he’s sprawled at the foot of it. I suspect no stranger will be getting past him.
He’s accepted that PiC’s not a fan of him giving hir kisses so while PiC continues to get sloppy kisses and wet willies, LB is now in the dry zone.
We’re bone tired but our little family is surviving!
I give Seamus a snuggle every day to thank him for being the best ever. This would be so much harder if the 2 of them didn’t mesh well.
