Happy Hearts Day! I hope that whatever you do or don't do it's full of cute silly valentine's puns, because what's the point otherwise?
For the bulk of the last week, I've been solo parenting, as Andrew was off at "AG-CON" which is the premier agricultural convention in the United States, I'm told. It was held at a fairgrounds in California and there were ATVs and baby cows and seminars on AI in Dairy from everything I hear (be afraid, be very afraid).
Back at the house, we actually maintained well. I think we're - knock on wood - back at an "easier" inflection of parenting for a brief pre-pubescent spell. Allan did her thing (drawing, researching the mating habits of birds, playing Scratch and watching Youtube). I did mine (making phone calls to various medical facilities - more on that later - drawing, taking my ornithology class and reading about Chinese villages having a lot of sex, violence and beautiful language). We did our things (watching many bird documentaries and never once sitting at the table for a meal). It was fairly smooth.
Last Sunday we went to the zoo with the express purpose of "seeing all the birds they have" (or at least hitting all the "aviaries" along the paths.
The zoo can be kind of overwhelming and easy to get lost in. And it can nuke a day if not planned just so.
This time, I nailed it.
We made it out of the house just about a half hour later than our optimal first-open moment. We followed a preplanned route (with a fair bit of flexibility, but nonetheless, using the map and following a flow with a plan of what we absolutely had to see and what was optional was so helpful). We just wrapped up our "must see" as the initial parking was about to expire and the crowds were swelling.
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| Waiting to swoop down when the penguins get fed |
We got home in time for Allan to look at all the pictures she'd taken, look at the pictures I had taken, and write/draw in her journal about the experience. And then we had fifteen or so minute of transition time before our absolutely mandatory 2 p.m. neighborhood crow walk. Like, damn I'm on it!
Truly one of the best planned trips we've accomplished!
We saw a bunch of birdies, tons of bugs, many non-avian reptiles, and those cutest of vicious killers: snow leopards. A win all around.
Still the highlight of the zoo trip was actually not a zoo exhibit, but two crow mobbings of giant ass beautiful birds of prey who happened to stop in for cameos.
By the Family Farm, we ran into a Barred Owl being harangued by our baes!
By the Reptile Room we ran into a harried as heck Bald Eagle.
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| Eagle booty |
For the most part, the crows didn't seem super out for blood and things resolved peacefully, but it was nice of them to alert us to the extra features!
This visit was all around a much nicer way to do the zoo than going at busier times. I highly recommend going early on an overcast winter day. The fact that it was Superbowl Sunday didn't seem to have a huge impact given how the crowds were increasing when we left, but it wasn't a bad bet.
And the rest of the week has come with a boom and a bang and a variety of things to keep us girls busy. Some less fun than others.
Never ever change insurance. It is just an endless labyrinth of vexation.
Let me just randomly insert pictures of birdies as I ramble about the little irritations of my life! Feel free to just scroll for pics!
You've probably heard me say this before, because I pretty never shut up on this one: Being chronically ill is exhausting.
I guess you could just say that "living with the American healthcare system is exhausting," but chronically ill people just do a whole lot more living with it I guess.
For a taste:
I take a monthly biologic called Xolair, which helps manage my hives and other MCAS symptoms. For Xolair, I need to get a pre-authorization from my insurance every six months. This requires coordination between my doctor's office, my insurance, and the specialty pharmacy. While sometimes it happens without a hitch, one of these three parties usually drops the ball and there's a disruption to the supply as I flail around trying to get them to sort themselves out.
While this is suboptimal, I have learned to space out my monthly shots just a little longer than a month so that by the time I actually deal with this issue, I usually have a backup shot for what is often a missing month or two. This turns out to be far less disruptive than getting shots regularly and then suddenly not getting it, but it probably does diminish the effectiveness of the medication. Oh well!
For extra funsies, this year we changed insurance this year. Not a single provider or pharmacy has made this an easy transition. I'm still waiting on Allan's medications to be cleared, because the Walgreen's website kept messing up the insurance info. Every place has a different labyrinth to navigate that is unlike other places in order to update the insurance. Almost every medical bill we've gotten since January has been off in some way.
Changing insurance also meant that between my December Xolair and my January Xolair, I needed to get a new pre-auth from the new insurance, despite just going through all that rigmarole a couple months previously with my previous insurance.
YAY!!!
After a month of waiting for what I was told would be a 10-15 day process, I was allowed to order my next Xolair from the pharmacy when I called to check...
... only to be called by an automated message on the day delivery was expected to let me know that I was no longer covered by insurance.
After some dicking around, I think somebody figured out that Accredo had updated my insurance but only as "secondary insurance" and had listed my primary insurance as Xpress Somethingorother which is a subdivision of Accredo and I don't understand at all what any of that means or what the actual fuck. Nor do I understand who was processing and approving my insurance and why it took 25 days for an insurance company that never existed to ponder my pre-auth and why the heck they allowed me to order Xolair at all, but here we are.
Anyways... I was told they'd call back or I could call in another 10-15 days, because of course the process has to start over again.
Uh huh. I'm sure I'll be dealing with this for several years.
On top of this, my immunologist's office - world famous for never answering their flipping phones - continually changes their patient portal services, requiring me to make several texts to their tech department in order to continue to be able to contact the office at all. I think currently I have an active portal account, but it seems to get messed up every several months leaving every MCAS patient floating.
So, I can't say that they're doing what's needed to be done, because sometimes they decide to just ignore the pharmacy and insurance for months at a time as well!
So that's fun!
But it's always a little adventure that way!
In less true and tried medicinal avenues, treatment for lesser understood conditions is largely just throwing things and seeing what helps or harms. So far, I've found a few things that help and a lot more things that make things significantly worse.
For my vulvodynia (if that's what it actually is, since that's a diagnosis of exclusion), I have had two biopsies and at least ten doctors over 6 or 7 years. I have tried several creams that I was allergic to. Medications that caused imbalances that led to new infections. And generally, have found that largely just not doing anything has a better track record than any actual treatment. Every time to I try to "do something" about it, it's expensive and often the opposite of productive. Every year or two I still try the next thing, but it's a bit discouraging.
In 6 years, 4 of my gynecologists have closed their offices or left. In that same time, 3 dermatologists have left or closed offices. I'm on my third PCP. And every time I go to a GI doc or neuro, it's somebody new. I do seem to have the same cardiologist this year as last, but we literally see each other for 5 minutes once a year.
The only reason my immunologist has lasted is that he's basically so unreachable that it's like finding a new doctor every time I need an appointment!
While optimally there would be an overseeing doctor who coordinates specialists and treatments into a seamless care plan, this role largely falls to me. Most doctors are scheduled months out, so a quick consult doesn't really manifest and there's zero collaboration so it's never quite as simple as "listen to your doctor."
Which one?
The weekend before last, I was prescribed amitriptyline (a tricyclic antidepressant known to help with nerve pain) and estrogen cream by a gynecologist who isn't my gyno but who had available appointments within weeks instead of months.
These are both first line treatments for somebody with my general history, so it isn't crazy by any means.
Sounds straightforward, but:
(1) Amitriptyline can cause cardiac side effects and should be monitored in patients with heart rhythm issues (which I do have). And it interacts with antihistamines, of which I take plenty!
(2) Anything cream is always dicey. This cream has several ingredients in it beyond the active ingredient, including propylene glycol, which is a known skin irritant and mild sensitizer. It's not one I've specifically noticed having a problem with, but it is also on a list of ones I generally avoid on dermatological advice.
So, patch test has to happen first (7-10 days applying to inner elbow to see if a reaction happens)
Which brings us to our next non-stop thrill ride of an adventure!!!
It's probably nothing to do with the estrogen cream. Probably. Maybe. (But also, it's not 100% off the hook.)
On the Friday before last, I started my morning in normal mode. At some point I applied some cream to a test patch and went about my business.
A short while later, I went to scratch my hip and noticed an angry red bumpy where a small itchy ought to have been. I looked more closely and noticed another bump about an inch away. Another one on my waist. Two slightly smaller on my front thigh. And then some bumps vining up my ribs, getting progressively smaller as they went up.
Urticaria? They looked welt-like, so I took precautions for a systemic allergic reaction (extra antihistamines and making damned sure the epipens are on hand).
But by the end of the day and the beginning of the next, things were itchy and hadn't changed much. Urticaria doesn't usually act like that. While the condition can last for days to years, an individual hive usually moves around. It's rare for one - let alone several - to show up and set down stakes for the long-term. The urticaria usually slips and slides around your body like a Natural Wonders chill out toy.
So what? A rash? Contact dermatitis usually involves more red skin between papules, but possible. But no rash on my chest (where I always react first) and I still can't think of anything that could make that line of contact like that.
More bumps showed up the next day on my arm.
Then the next day on my ankles.
Bug bites definitely lined up with the general aesthetic. Not mosquito for sure, because I puff up like crazy to those. But damned itchy red bumps in patches.
There were no fleas on the cat. I walked around with white socks and nothing visible hopped on.
Bed bugs? Actually plausible, especially because it can take weeks after introduction of a bug for them to become visible. And they bite in a similar zig-zag pattern on exposed areas of skin. Which fit the general appearance considering my shirt often gets hiked up that side overnight.
This theory had enough legs to call in a bed bug sniffing dog for an inspection. The inspection itself was entertaining and required an insane amount of last-minute cleaning before the dog arrived.
The house is deep cleaned in ways it hasn't been in a while, but the dog found nothing in particular of concern. At least I had it checked off on the report that the house did not suffer from excess clutter that would have interfered with the inspection.
According to the inspector bed bugs are active in our neighborhood and fairly easy to get one hitching a ride to your locale. So... not totally asinine.
Funnily enough, the day after the deep clean was the first day I didn't come down with a ton of new angry red itchies. I still am getting little dots here and there, but that's generally more in line with my general dermatitis. I think. I hope. I have no idea.
The only thing I can think is that some fleas did make their way into the house, but none were pregnant and when I vacuumed and hot washed the shit out of everything (and emptied the vacuum cannister outdoors wearing a silly combination of PPE and disposable outer layers to avoid a massive allergy attack!) they made their exit. We do have squirrel visitors and they are often carriers. So... fingers crossed.
Or maybe it was a reaction to the cream. A really, really weird one.
Or something else entirely! Who knows!! Never a dull moment!
On the bright side, our area has seen some general cooling and precipitation that just might restock some of the totally melted snow pack Washington relies on. It's been wet and cold like winter oughta be. I hope it can keep going in this direction!
At any rate. Andrew's home again for a couple more days (then back off to Eastern Washington!) and there's nothing crazy scheduled for the weekend beyond chores.
I hope you all have marvelous moments of whatever you like to do on Valentine's Day!
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