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Time to get reamed by healthcare! Lyme Patient Edition

I’m not going to talk about promises made, or private insurance for entrepreneurs and small business owners, or anything like that.

I’m going to talk about our particular plan, from Forrest’s place of business, and how we’re utterly screwed next year because of it.  He works at a decent company that’s been fairly awesome about health insurance, but is changing things up, presumably to force people out of the plan so that they don’t have to pay as much (because they do SOME price-matching – it’s what made the plan so awesome for us, this year).

Our deductible hasn’t changed.  Our premium isn’t going up that much.  Because of this, I guess we’re relatively lucky compared to some.

Where we’re being screwed is our co-pays for doctor visits and prescriptions.

The full price for both will go toward our deductible, and then will go back to the regular things we were paying before ($25/40 for docs/specialists, and $8/16/some-odd-% for prescriptions).

Our deductible isn’t AWFUL, but it’s not great when you look at both of us, and the issues we both have.  I have my Lyme disease treatments and my regular treatments for the symptoms I’m having, very few of which can be handled by OTC medications.  I will also have things to take care of post-hysterectomy, with hormone adjustments and follow-ups, which will go on for a while until I’m not only healed, but they figure out whether I need HRT or not (even with one ovary, it’s possible, but we’ll see).  Tack onto that some emotional issues (mostly anxiety and panic attacks), and I’m kind of high-maintenance.  I haven’t even started therapy, yet, so I don’t know how much that’s going to cost…but that’s another deductible-first thing.

Forrest has a CPAP, horrible reflux, and anxiety.  He’s medicated for all of these, with regular visits to a sleep clinic and for blood tests for his cholesterol medication in there, as well.

You may argue that we’ll make our deductible quickly, and that may be true, but having to pay all of that up front is causing some serious issues in what our day-to-day life is going to be like next year.

For example, I just tallied up how much the prescriptions I had to refill today would cost with my co-pay as compared to if I had to just pay for them outright.  Co-pays = $56.  Outright = $831.49.  Difference = $775.49 more PER MONTH for what aren’t even all of my monthly meds.  My deductible will be met with just medications after something like 3 months.  Yay?  I think not.  Where’s that money going to come from?  I can’t work right now, I don’t know when I’ll be able to get a job, and I have other bills, as well.

Then there are my doctor visits, which I have to have at least every 90 days for some things, and monthly for other things.  My co-pays for my GP are $25, while the specialists (which my surgeons, gyno, and sometimes my LLMD fall under) are $40.  If I get sick in addition to my med visits, or if I have to visit the emergency room, just tack $40 or $150 onto whatever my monthly med total is…but I’m talking about basic monthly care, here.  The last time I self-paid, they put me under some medicare thing to keep me from having to pay out the wazoo, but they’re not going to be able to do that, any more, what with the close scrutiny they’ll be under…thus, my regular GP visit will be around $200 a pop, and my gyno, for example, will be around $400 (because I’m no longer having preventative care – I have no uterus, for crying out loud, I’m just going in for maintenance of one ovary and for hormone levels, which aren’t considered mandatory care for women).

That adds at least another $1600/year onto my health expenses, bringing the total to around (using just the prescriptions I got today, which aren’t all of my monthly ones, but it’s close enough to round up to $900/month) $12,400 per year JUST for the basic care I need for my condition.

That’s not even taking Forrest’s care into consideration, and that’s basically the entire salary for a decent part-time job…but I can’t work right now, so where the hell is that money going to come from?

That’s just over $1000/month JUST FOR HEALTH CARE, and that’s not even guaranteed to be the lowest amount.  I just…can’t.

Just for HIS medical stuff, Forrest is going to have to get a second, part-time job.  He’s so stressed as it is that I’m not sure what on Earth he’s going to do.  We’re not going to see each other unless I sleep all day and wait up for him at night, but even then we’ll say hi and he’ll go to bed to get ready for his main job.

And through all of this, yeah, I’m scared, but I’m mostly SO FREAKIN’ MAD.

I’m angry that Lyme is treated like a pariah’s disease, so that I have to work so hard to fix the mistakes made so many years ago, which takes a full 52x longer than the original treatment is purported to take by the CDC (2 weeks is what they say, 2 years is the actual estimate for long-term cases like mine, and I’m the norm, unfortunately).

I’m angry that I can’t work, that no one believes I can’t work because, again, there’s misinformation about Lyme and what it actually does to people.

I’m angry that I can’t help myself that much, and thus help Forrest, because of my illness.  This also depresses me, which causes this awful cycle of feeling bad because I feel bad, which makes me feel bad about feeling bad, etc., ad nauseum.

I’m angry that I’m not being taken seriously by major players in the healthcare game, and that I have to fight just to get the basic care that’s provided to people with diseases that have been curable for decades…and which they get from unprotected sex (not talking about AIDS, obviously, but syphilis is on that list, YEP).

I’m angry that I’m made to feel like a second-class citizen because I’m up-front about my illness.  I don’t tell people, “WAH, I have Lyme, FEEL SORRY FOR ME.”  I say, “I have Lyme.  Let me run down the physical symptoms and what I’m doing about them to make myself better so that I can stop being sick as soon as possible.”  Doesn’t matter how positive you are when you present it, people still think you’re whining, and feel the need to point out that “at least [I] don’t have cancer,” or something like that.  No, you’ve got it wrong – I almost wish I had cancer, if only because people would take me more seriously.

And what the hell are people with cancer going to do with this new insurance?!?  I mean, holy crap, I have a choice whether or not I want to do chemo for Lyme (my treatment will just take a much longer time, but at least I will be getting treatment), but people with certain types of cancers have no choice – it’s either hook up that PICC line, or die in 3 months.  What are they supposed to do when they’ve got such limited coverage?


I’m just…apoplectic.  I JUST CAN’T RIGHT NOW.


And to top it all off, my rash is showing all signs of being an allergic reaction, now (it’s started itching, and it’s continued to spread even though I’m following all of my doctors’ suggestions), and that’s had me on edge.  Yeah, it’s a little thing in the big scheme of things, but it’s just something I don’t need.  Otherwise, I’m recovering fine, I suppose.  My skin feels hot constantly (not just over my surgery site, before someone asks), and I have a rash spreading over my body.  Those are my two main complaints.  I just hope it’s not something that is a result of my medication schedule or something, because the last thing I need is my liver fucking up.

And speaking of my liver, I WANT A GLASS OF WINE SO BADLY.  But nope – can’t have one, because meds.  And this is where being a responsible patient becomes a pain in the ass.  I don’t even want to get drunk – I just miss the taste of my wine.  How utterly sad is that?

I will not have a drink.  I will pout, instead.  Then I will fume while watching Netflix.  It’s the only recourse I have, right now.



4 comments to Time to get reamed by healthcare! Lyme Patient Edition

  • Joseph

    One of the changes this year to my company’s insurance is that it will now cover In-Vitro Fertilization. My understanding is that it is rather expensive. And it is not something (to my way of thinking, but I’m a guy) that really affects the actual health of the person. For this and other reasons, my monthly premium has doubled after increasing 30% last year. Somehow, I can’t help but think these increases have something to do with the ACA.

    • “Somehow?” Dude, that’s the ONLY reason those changes are taking effect, and I’m so over the in-vitro thing. I understand why people want it, but it’s not vital, IMHO. I’ve seen someone argue that it’s vital because if a woman has cancer and her uterus malfunctions, she should still be able to bear her own children. Um, no, nature kind of took care of that one, for you – get a surrogate, adopt, or get a lot of cats. If that sounds completely insensitive, it’s probably because I don’t have a uterus, any more, so I’m not exactly the most chipper with regard to childbirth issues. Half of my “if this happened, I’d do this” got extracted along with my uterus. :-P

  • Ed Stafford

    Well, there are a couple of lights at the end of the tunnel with respect to that which you listed. One, Patty usually hits our deductable in 3-4 months every year. It doesn’t take long, and that’s the main crunch period. After that, you’ve got the max out-of-pocket expenses where insurance picks up 100% sans prescriptions. We’ve hit that one twice, easily. So, the $12k bit will VERY likely not occur for you guys. I wouldn’t imagine more than half that at any given point.

    Insurance sucks. We have it because we really can’t afford most medical issues. Go in with a bad respiratory infection and check out the ungodly cost associated with just the initial visit and treatment. Hell, most shots are around $120. It’s sad, it’s insane, and I figure that the malpractice insurance is a goodly portion of the horrendous pricing. Granted, doctors really shouldn’t charge more (imho) than $35 per visit. Pretty much every doc I’ve known has back-to-back patients all day long. That’s a lot of income for folks to just say “Hi, I gotz teh sik!”

    So, don’t get yourself too worked up. It’s one of those things like Forrest told me. If there’s nothing you can do about it right now, it’s not worth worrying about it. You can’t work, you can’t get a normal job, so there’s nothing you can do right now. Just sit back, heal up, get better, and though you can always expect the worst, try to keep an open mind that sometimes, there’s accounting “tricks” that keep things from getting so far out of control.

    I still hate deductables and co-pays. I know why they exist, but they piss me off something fierce anyhow. As for the allergic reaction, you might be developing an allergy to codine/hydrocodone, which is what it kind of sounds like. I have the same issue. (Percocet is fine, Loratab makes me itch SO bad!)

    • The max out-of-pocket has gone up, as well…quite a bit. It’s not a yearly thing, it’s a lifetime thing, and our insurance never pays 100% of anything except stuff I don’t need, any more (birth control and gyno visits that are unrelated to my hysterectomy…and mammograms are a long way off). I’m more upset because I was supposed to start my major Lyme-butt-kicking meds in June-ish, and I won’t be able to afford them, anyway, and now there’s no chance of them even being covered under our insurance. I didn’t even factor those into my monthly med count, because it’s not set in stone, but that’s approximately $16,000 a month in I.V. medication, and that’s not factoring in the hospital stay for the PICC insertion, the special equipment because of my latex allergy, and the doctors’ visits to check on things regularly. Lyme is as expensive as cancer.

      If the rash was from meds, I rather think it would itch. I also had to take two last night because we went out (two surgeon follow-ups) and sitting in my wheelchair apparently wasn’t so awesome for me…my hip is being stupid, my lower back is killing me, and my abdomen is just sore. I woke up today and the rash had diminished a bit. Not a lot, but it wasn’t quite as angry-looking.

      I also got a dx of pityriasis rosea for the rash, and it’s apparently really common for people who are stressed. *shrugs* We’ll have to see if that holds up when I go to a dermatologist.