New: Follow my blog on the app Bloglovin. You can also follow by putting your email address in the first box there on the right, and then see my new posts via the WordPress app or in your email.
And, as always, please forgive any typos.
If that title is too obtuse for you, I’ll put it another way:
Being chronically ill sucks, make no mistake. Having chronic, unrelenting pain sucks as well.
Being told by a specialist doctor (as I was recently) that I’m in the top 1% of severe fibromyalgia cases and that I’m never going to get better is also awful.
But what wears me down, bit by bit, is the rest of it, the small things: the leaves, if you will.
Every single tiny additional bit of leaf flung on you that you have to deal with, or end up smothering in them.
It’s having to put your trust in people who are supposed to literally care for you – not the subjective feeling of care, either – and be forced to wait an innumerable amount of time – on the phone, then weeks or months for an appointment, then in (usually) noisy waiting rooms, then in cold, uncomfortable exam rooms – only to experience scant attention, judgement, and condescension.
It’s finally getting the energy, and having to call and call and call and call for a million things – make appointments, change appointments, request orders from your doctor, check on pre-authorizations with insurance, ask insurance why something wasn’t covered, chase down results from tests, send results to the appropriate doctor(s), and followup on all of the above. And having to muster up more energy to call and call because not only can you not get ahold of the person you need, you can’t get ahold of anyone!
It’s going to see any one of your many doctors and having to strike that balance of showing that you’re sick enough to need care and thus be taken seriously, while not appearing too well, but also not appearing too sick or delirious or upset from the pain you’re going through to be dismissed as just a drug seeker.
It’s being referred to doctor after doctor after doctor, all of whom say they can’t help you (if you’re lucky) or you can’t be helped.
It’s having the specialist you’ve already waited three months to see change your appointment to a month later. And of course when you finally see him, the specialist is no help whatsoever. A specialist who says they will phone to follow up with you, but they don’t, and so you call and leave a message, you send three emails through their online portal, and … nothing.
It’s leaving a doctor’s office and having to decide whether to take the stairs or the ramp to get to your car: the stairs will hurt your knees, and you might fall down, but they are closer to your car; the ramp will probably be easier on your knees, but it’s a longer walk to your car, so it will be more tiring, and you might fall down crossing the parking lot.
It’s having to cancel a physical therapy appointment because you dared to go out of your house for a rare dinner, which causes such a pain flare so bad you can’t leave your bed for
three four days.
It’s having your doctor send in a prescription that somehow never arrives, so you have to contact the pharmacy to check on it, contact the doctor to let them know they didn’t receive it, wait on the pharmacy to see if they received it, and over and over until you finally receive the med – at least a week after you’ve run out.
It’s the medication that has two formulations, and even when you remember to tell the doctor to write down the right one when the doctor doesn’t remember, the pharmacy sometimes still fills it for the wrong version. And fighting it and fighting it until you just give up.
It’s researching the cheapest / best supplements and medications for your conditions, and ordering them, knowing you don’t have the money for them, but knowing you can’t physically afford not to have them.
It’s researching the side effects of meds and deciding if those side effects are worth it, as they could potentially make everything else that’s wrong with you worse.
It’s being allergic to “normal” thyroid medication, so having to get a compounded version – which insurance doesn’t cover and is really expensive.
It’s spending literally days of brain power to put together a letter requesting information from your insurance, only to get a nonsensical letter in return, and having to call them – over and over and over – to get it sorted out. And being told “You need to tell us exactly what you want” when the letter you sent could NOT be any clearer.
It’s spending literally days of brainpower to respond to a request from insurance, which first requires no less than five emails to your provider asking for the information insurance wants – information you already provided but that the insurance people who receive and process claims can’t seem to read properly.
It’s getting yet another denial from insurance for a medication/ procedure/ what-have-you that you really need.
It’s the sinking in your heart when you get a piece of mail from a doctor or your insurance or a pharmacy.
It’s getting a collections notice from a lab when you never received a bill in the first place, and you weren’t expecting a bill at all. Then it’s never receiving any further bills or statements, even after requesting them, so not knowing if you owe them anything.
It’s being handed a $4,000 bill by a doctor right before a stressful and scary procedure, because your insurance didn’t pay for past visits, for no particular reason.
It’s the pain that vibrates up your entire body with every step. And the little spasms that hit you when you’re doing absolutely nothing more strenuous than breathing.
It’s getting up from bed to go to the bathroom and instead crashing into the wall because your body won’t move they way you’re telling it to.
It’s having to be mindful of your right arm – and you’re right handed – after receiving a terrible, long-lasting bruise (14 days thus far) from an I.V.
It’s being almost out of one of the few things you can eat that doesn’t make you sick, and hubs going to the grocery store to get you some, and the item being out of stock. On two separate occasions. So you do run out.
It’s going to eat something that should not affect your allergies in any way – frozen broccoli! sunflower seeds! – and reading that it was processed with wheat and soy ingredients. And you’re allergic to gluten. So you have to go back to carefully, religiously, reading every single ingredient list for every single food item.
It’s your shaky hands that don’t grip well, so you drop an open bottle of medication and the pills spill all over the countertop and the floor. And having to get down on your hands and knees to pick them up, because you happen to be home alone at the time, and you can’t just leave them there.
It’s listening to all the well-meaning (giving them the benefit of the doubt) people who give you absolutely ridiculous ways for you to get well. Never mind you’ve already tried them. Or they don’t work. Or they’re dangerous for you.
And then having to listen to them berate you for “not trying hard enough” or “not wanting to get well”.
Obviously, I could go on and on (and on and on), but I think you get the idea. (And you’re probably sensing a trend.)
It’s truly the leaves. I’m trying not to drown in them.