Crushed and Shaken to My Core

The American people were given a choice of a black woman who promised to restore women's bodily autonomy and to tax the ultra-wealthy in order to help the elderly stay in their homes, invest in infrastructure and green technology, which creates jobs while mitigating climate change, and pass common sense gun restrictions. Or they could choose a proven fraud, rapist, and liar who promised the impossible task of throwing out all the fucking Mexicans, Muslims, and trans people, to murder his opposition, to raise everyone's taxes, thereby crashing the economy, and to put a vaccine denier in charge of public health and a failing businessman in charge of slashing a third of the federal budget, causing "temporary hardship."

And by affirmative choice or indifference, the American people went with the grotesque, vulgar carnival barker.

We deserve the suffering that is coming, and it is a tragedy that we will drag millions of people in the rest of the world down with us.

For the first time in my 50 years of life, I no longer want to be an American citizen because we are truly the stupidest, cruelest people in the world.

Healthcare in America: the Joke That Refuses to Keep on Giving

We finally got Cigna to approve the type 1 diabetes treatment that Maggie had been getting for four years before we switched insurers. So, yay? I still have a two billing problems to deal with, but at least she is going to live long enough for to see that get straighten out.

But for myself and my non-life threatening problems...

Skin Care

Just before my mom died in 2022, my skin rebelled against me. I had a rosacea flare, pityriasis rosea, and eczema all gang up on me at once. I made an appointment with a dermatologist...for four months later, by which time, two of the three had resolved by themselves.

In the mean time, to treat my rosacea, I went online and got a prescription for low dose doxycycline and a cream that I was amused to see contained, among other things, (not covid-killing) ivermectin from a compounding pharmacy that does not bother with insurance. I had to upload a couple of the worst selfies I've ever taken and within a few days, I had my meds. Within a couple of weeks, the disfiguring bumpiness of the rosacea was under control. Some redness, evidently, I'm stuck with for life. It cost $50/mo out-of-pocket that insurance wouldn't cover, but it was at least being treated nearly immediately.

When I finally got in for my dermatology appointment, I saw a physician's assistant, not the dermatologist, who also prescribed the low dose doxycycline plus prescription strength azelaic acid. Insurance declined coverage on Oracea—40mg/day doxycycline retailing at $700/mo—but was willing to pay for generic 50mg/day caplets at less than $20/mo retail. Can someone please explain to me why it costs 35 times as much for 20% LESS of the drug. (Yes, yes, they are *slightly* different formulations, but FFS.) Similarly, they declined coverage on $450/mo Finacea foam, but paid for a generic $50 gel formulation of 15% azelaic acid. It's hard to blame the insurance for "suggesting an alternative."

When insurance changed, I stopped refilling my prescriptions for a couple of years. I use most of my energy for arguing with healthcare on taking care of Maggie. But I had a terrible breakout starting last month, and I knew exactly what I needed. I called the dermatologist. Another four month wait for an appointment. So I went online to my insurance website which referred me to a Telehealth visit—it says skin care right there on the website! I paid, made the appointment, and within 10 minutes I was talking to a doctor. Except it turns out that the harried doctor seems to have wholly misunderstand my need. He sent a prescription to the pharmacy for a 7 day course of doxycycline rather than ongoing low dose doxycycline. That is NOT what I needed. 

Soooo... I went online, uploaded more bad selfies, and for less than the cost of the Telehealth visit, I am getting enough low dose doxycycline to get me through to my dermatology appointment. Again, insurance won't cover this. 

General Health

After my mom and my brother died in quick succession, I figured I'd better go at least get a physical to see if my heart was about to give out too. It took—I shit you not—a year and a half to finally see my doctor. When I initially called, the "first available appointment" was—you guessed it—four months out. Then he went on medical leave and the office kept postponing every couple of months. After a YEAR of this, I explained that I really needed an appointment to get my blood pressure meds renewed, and I finally saw someone else in the office to get a quickie blood pressure check and routine blood work. 

Mental Health

In the mean time, I was, not shockingly, depressed. I went to find a therapist, and the few who were accepting my insurance and accepting new patients had—you guessed it—a four month wait. So I went online again and got a prescription for an antidepressant from a company that does not accept insurance, but will provide prescription meds through the mail within a couple of days rather than waiting months to see a doctor. Another $49/mo out-of-pocket for generic Wellbutrin XL, which would be entirely covered by the insurance if I could just get in to see my own doctor. *sigh*

Weight Loss

In the interim, I got a lovely letter from my insurance saying they would subsidize weight loss programs, including Noom. So I signed up for Noom, and, what with my aforementioned high blood pressure and tragically demonstrated family history of heart disease, I fit the diagnostic criteria for weight loss drugs. They shunted me into their new Noom Med program, and for $400 (partially paid for by my insurance!), I got an appointment with a nurse practitioner, orders for some blood work, and then a prescription for Wegovy. To my utter astonishment, my insurance approved it!!! Only...there was none to be had because of the shortage of injectors. I waited six months with the pharmacy saying every two weeks that they had placed a special order. Then my insurance changed again, and the new one was not paying for any part of Noom Med, and there was no guarantee they would pay for the Wegovy when Noom requested pre-authorization. Oh well... Guess I get to stay fat.

Except that if you care to, and can afford it, you can pay $200-500/mo out-of-pocket for compounded semaglutide, the same drug as Ozempic/Wegovy but without the nifty injector, through any number of dodgy websites with minimal medical supervision. 

Erectile Dysfunction

All of the above applies to erectile dysfunction meds, though this is clearly not a problem I have. 

Summary

It is easier and faster to pay out-of-pocket, without seeing a doctor, for prescription drugs that SHOULD BE COVERED THE INSURANCE, WHICH I DO HAVE AND AM PAYING A FORTUNE FOR!!!

Best healthcare in the world, eh?

Motherfucking Medical Insurance

We had no choice of insurers when my husband started his new job. It was Cigna or go pound sand. So we have Cigna with a high deductible plan. 

I spent $2,180 for insulin pump supplies and CGMs for Maggie's continuing care (eleven years and counting) in February assuming that it was more than halfway to the deductible. I now doubt whether the supply company checked with Cigna for prior authorization before shipping the supplies, but I know I DID provide the insurance information. Cigna still hasn't finished processing the claim. I don't know whether they are ultimately going to cover it and will apply the $2,180 toward the $4,000 deductible. I'm about to need to order more, still not knowing whether they will cover it. If they do, this would put us over the deductible and mean that we would be done spending money on Maggie's T1D care for the year. Or maybe we are just on the hook for it because they just don't consider that the gold standard of type 1 diabetes care that she has been getting for over a decade through two different insurers and multiple policies is "medically necessary." Every trial done shows the very DUH result that "sensor-augmented pump therapy" is the best way to control blood sugar in type 1 diabetes and to minimize both short and long term complications. That sounds pretty fucking medically necessary to me, but what do I know? I'm not a claims specialist at an insurance company. 

It is now been a full two months since our pharmacist told me that Cigna will not cover the brand of insulin that the previous TWO insurers approved without hesitation. I asked the endo office if Maggie would really have to switch to less effective insulin, and they said they would request prior authorization. I'm still waiting TWO MONTHS LATER, and we are down to the last of the kind of insulin that both CDPHP and BCBS paid for without question or fuss. 

It is INSANE that an insurer can decide that they will not pay for PERFECTLY FUCKING STANDARD treatment that has been working brilliantly for a decade. 

I have been pinging the endo every week or so and the latest was that Cigna says have no record of Maggie being insured. Weird because she has an online account with claims that are being processed, and the pharmacy told me that Cigna would pay for Humalog rather than Fiasp, so THEY know she's insured.

We happened to have a lot of insulin backed up, but it's been two fucking months. We have about three weeks before she runs out of insulin and becomes gravely ill. There is URGENCY here, folks. You'd think healthcare people, both doctor's office and insurer, would know that.

I'm sure that a hospital will view it as medically necessary to admit her when she goes into DKA. Maybe Cigna won't. Who knows?

Fucking Medical Insurance

The good news is that I am finally down to only ONE medical claim from 2022 that is in dispute! For...reasons, Edgepark Medical Supply submitted claims for some, but not all, of Maggie's CGM supplies to our insurance company as durable medical equipment with a 50% copay instead of diabetes supplies with a $15 copay. I've spent the last two years trying to get them to fix this. Edgepark blames BCBS, BCBS blames Edgepark, and I keep getting bills I shouldn't have to pay. And I keep calling to explain, yet again, what happened and why it needs to be fixed, only to be told that it will all be resolved in 45 business days. Rinse, repeat. 

But like I said, down to just ONE claim left and then maybe they can stop calling me. And emailing me.

On the other hand, I am utterly flummoxed by our new health insurance. With Jose's new job, we did not have a choice of insurers, but we had a choice of plans, all with Cigna. We made our best guess about how much each plan would cost us, given our particular medical needs. The cheapest seemed to be a high deductible plan where the employer reimburses us for the majority of the deductible. 

I've never had a plan with a deductible, so this was gonna be new. I thought I understood it. We pay the first $8,000 in expenses, of which the employer reimburses us for the first $6,500, and insurance covers whatever exceeds the total deductible.

The first test was picking up prescriptions for me and Jose, our cheap-ass generic blood pressure meds. There was no copay at all. OK, cool? I knew some insurers were not charging copays for (cheap) preventative drugs to encourage people to manage chronic conditions, so maybe this was that.

Jose went to two cardiology appointments that had been set up the year before under the old insurance. They said they would bill him. I'm still waiting for those bills...two months later. 

Then I went for a checkup. I paid the office's estimate before the appointment because there was a discount for prepayment. At the pharmacy afterward, I was charged $3.25 for a clonazepam prescription, necessary for those days when I have to spend hours on the phone calling about health insurance. The $3.25 appeared quickly on the insurance webpage as counting toward the deductible. 

Both Jose and I got MRIs for calcium scores, which are recommended by doctors, but NOT covered by insurance because why would they? Fuckers. But they're relatively cheap by American medical care standards, so $85 to know my heart isn't ossifying was a tolerable price.

I waited some more.

Finally, a claim for my checkup appeared in my benefits portal, and it showed $176.32 paid to the doctor and nothing owed by me and nothing counted toward the deductible. Is it because it was preventative care and therefore the ACA required it be covered 100% without copays? Dunno? If so, why did the doctor's office charge me, knowing I had insurance? And if Cigna paid them $176, where is my $250 prepayment?

More critically, I ordered infusion sets, CGMs, and insulin pump cartridges for Maggie. The CGM sensors should retail for less than $100 each; the sets for about $80/box of ten; the cartridges for another $50/box of 10. We have always gotten all of it from Edgepark for a small copay for three months' worth of supplies at a time. However, trying to meet the deductible, one might expect that I would have had to pay about $900 for sensors, $320 for sets, and $200 for cartridges, for a total of around $1400. The retail prices listed on Edgepark's paperwork are INSANELY higher than those average figures from a quick google search. But WTF? We are going to hit the deductible one way or another, and those internet sites don't take insurance, soooo.... I paid the $2180 and quickly got reimbursed. 

However, the cost hasn't shown up as counting toward the deductible. And we will need another three rounds of those supplies by the end of the year, easily exceeding both the $6,500 reimbursement allowance and the deductible that they're not seemingly counting toward. 

Fuck.

The next thing is insulin. The pharmacy tried to fill Maggie's insulin prescription, but they said that Cigna doesn't cover Fiasp, which she has been using for years. I asked the doctor whether we needed pre-authorization and if could she get it. I've been pinging her regularly, but we don't seem to be connecting on the problem. I am guessing she is assuming the pharmacy is asking for preauthorization, but they seem to think that is not a possibility so maybe they haven't even asked the insurance company? Dunno. 

So I decided I would call the employer benefits people, the customer care team whose job it is to help us navigate this mess, to ask about these two things, and while I was at it, whether Cigna covers the Omnipod insulin pump, which Maggie would like to switch to. 

That was...protracted and ultimately pointless. 

A very nice guy named Ed said he didn't know what to say about my checkup but he would get back to me about it. Then he looped the pharmacy benefit people into the call to ask about Fiasp. (I could have called them myself, but whatever.) A very not-nice woman took all my information, and Maggie's information, then told me that Fiasp isn't on the formulary, which I knew. But she simply would not tell me whether it was covered after pre-authorization because it's not for me, it's for Maggie, and she's over 18, and I would need her permission to call on her behalf. 

FFS. I didn't ask for Maggie's medical history. I asked whether the insurance policy covers XXXX. For anyone at all. Nope. She wouldn't say. She then forced me and Ed to go through their customer service survey, and let me tell you, she did not do well. Lots of 1s out of 5. No, my question was not answered with this call, and no, I would not recommend Maxor+ to other people. 

I guess I can call tomorrow while Maggie is home and get her to give them her permission to ask questions on her behalf. Or I can call again and just pretend to be her. I know more of the answers to their security questions than she does. So then maybe we will find out whether they will pay for her insulin or not. And while we're at it, whether they will pay for the Omnipod, because I now have ZERO incentive to try to save them money by stretching the life of Maggie's Tandem pump if they're gonna be shitty about my kid's life-sustaining healthcare. 

#MedicareForAll

I Miss My Mommy

On a day-to-day basis, I miss my mom. I think to text or call her, like, ALL the time. But some days, I really, REALLY miss my mom.

Today is one of those days. I want to talk to my mom about how much I have ended up needing my kids' approval. And how I will never have it from Maggie.

I will always be a disappointment to her. I will never impress her. 

It is what it is. 

And I know that it's too much to ask it of her. She's not my therapist or my mother. She's my child.

And I know my mom would understand my needing Maggie's approval anyway because I know that she spent the last half of her life desperately hoping that her children approved of her parenting choices. 

When Antonio was a toddler, she was carrying him, and she tripped on her flip-flop on the way to the car and she fell down and took him with her. He might have bonked his head, and he was quite upset. I was startled but not especially worried. My mom stood up as I was picking a crying Antonio up and the look of abject terror in her eyes when she apologized to me was heartbreaking. She was so incredibly scared that I would be angry with her for that little accident, for hurting my baby. I was not the least upset with her. Things happen. But god, the horrible fear in her frantic eyes will stay with me forever. 

My mom was a better mother than I could ever have been. And yet, she was afraid of my opinion of her. I told her she was ever so much better than me, but she didn't believe me. She somehow believed my half-assed, impatient, inadequate bullshit was somehow better than her effortless motherliness.

I never should have had children.

It Was a Stupid Idea Anyway

Just like the rest of my stupid ideas, trying acting was a stupid idea.

Maggie and I auditioned for a play together, and her tepid response tells me everything I needed to know. I really shouldn't bother doing this again.

She got her part.

I didn't get any of the three parts for which I was age-appropriate. If I had been the director, I wouldn't have cast me either.

And I'm not doing this again. 

The false kindness of encouraging everyone who comes out to audition is, in the long run, quite cruel. We are not talented. Just say so rather than wasting everyone's time. 

And now I have to be a big girl and a good mom and be excited for Maggie while I feel crushed and, even worse, stupid for ever thinking I could do this.

License to Hoard

The great promise of Netflix when it was introduced, waaaaaaay back when it was snail-mail Blockbuster, was that they would eventually have every movie ever made available to rent. This was AMAZING for film nerds. I got to show Jose a cool black and white Yugoslavian movie from the 60s that I had seen in film school that I never would have been able to find at my local Blockbuster or even one of the hip indie movie rental places in Berkeley. (For those interested, it was Love Affair, or the Case of the Missing Switchboard Operator, directed by Dusan Makavejev.)

Flash forward twenty-odd years, and now instead, Netflix and other streamers are producing movies that they never intend to make available even once because it is more financially advantageous to avoid paying taxes by writing off the production expense than to make it available to be...watched as if it were art on which thousands of skilled, creative people collaborated and which customers might love. Streamers are also regularly removing older movies from their services while then adding commercials to streaming because DON'T WE ALL JUST MISS "FREE" BROADCAST TV SO FUCKING MUCH AND WANT TO NOW PAY FOR THE PRIVILEGE?

On the micro scale of that corrupt tax avoidance scheme are a handful of indie knitting pattern designers who have decided to take their creations offline, but I doubt they have taken their intellectual property bat and ball and gone home in order to avoid taxes. Whatever their reasons, I do find it very annoying that I cannot get patterns that I see on Ravelry because a designer inexplicably decided a trickle of residual income was...what? Too much of a hassle?

And worse, I can't buy or trade the pattern from someone who already has it because it turns out that the "purchase" of a digital knitting pattern is not a purchase. As with the terms of use that we click blissfully past as we install software, we are paying for a license to use a digital file that we do not actually own. So I cannot sell or even GIVE AWAY a digital file of a pattern, even if I delete it afterward so that only one person has it because that would violate the license agreement, which—because I didn't read the TOU—I was unaware I had entered into by "buying" the pattern. End lesson: I need to save and/or print out a hard copy of EVERY DIGITAL PATTERN I'VE "PURCHASED" before Ravelry, Apple, and/or Dropbox change their terms of use.

I love artists of all sorts and I believe they should be compensated for their work. I believe they should have control over their creations while they are alive. I have some minor reservations about how much control and profit their "estates" should have because I'm not a huge fan of generational wealth, but off the cuff, I would say that an artist's spouse/partner and children, who knew and supported or were supported by the artist, should be in control of the work until THEY die, but after that, not so much. Then things should enter the public domain. 

I know I do not have a right to anyone's work. But damn if I'm not disappointed that people are hoarding creative work where the world can't enjoy it, even when we are willing to pay, or are ALREADY PAYING—looking at you, Netflix.