My rheumatologist’s admin is helping me navigate the murky waters of my insurance mess, and we’re making progress. This means that all three of my infusions are going to be covered -- hooray! -- and all future ones as well. Of course, I have no idea how much each infusion will cost, nor how much of each treatment the insurance company will cover, but at this stage I know that I will not be responsible for 100% of the total which is a huge relief.

On top of that, I did my homework and signed up for the drug manufacturer’s patient assistance program so once insurance pays for their part of the treatment, the drug company will cover part of the remainder. Whatever’s left after that, I will pay.

So that's good.

Of course the not-so-good part is that we’re not even sure the drug is working. I had my third infusion yesterday, and am going to keep a diary of how I feel for the next 4 weeks. If in 4 weeks, I still feel crap, I’ll let my rheumatologist know and she’ll up the infusion dosages. We’ll proceed in this way for the next 2 infusions, and see what happens. I’m on a fairly low dose now because the infusions are always scheduled that way, in increasing dosages to essentially load up your body to a level that can be maintained for 6-8 weeks.

In the meantime, I’m back to taking steroids but at a super low dose, and I’ve been given permission to experiment with the dosage to find the right amount that 1) lowers inflammation and pain and 2) doesn’t make me moody and manic. I am my own science experiment!

If after 2 more infusions, the medication is still not showing efficacy at reducing symptoms, then we’ll begin the process of finding something else that a) will be effective and b) my insurance will actually pay for.

And on the TA vs. insurance company front, it's gone from absurd to black comedy. The insurance company is refusing to pay his emergency room/intensive care unit bill until he sends them a copy of the accident report. And guess what? The police station won’t mail, fax or email the report; you have to pick it up in person. So TA spent nearly $90 to rent a car to drive up there on Friday to get a piece of paper that pretty much says, “Yep, he was in an accident and he had to be carted off by EMTs because he couldn't breathe.”

TA had a follow-up on Monday with his surgeon and mentioned that the insurance company was contesting his surgery, calling it “unnecessary,” and his surgeon flipped out, pulled out his voice recorder and started penning a rebuttal right then and there, in the examination room.

You know it’s bad when your doctors are losing their shit over this stuff!

Oh, and also? Yesterday I got a letter from the insurance company stating that my first infusion will cost $5,064.81. That not-covered $800/month medication is looking pretty good right now…

Yesterday we just got a letter from the insurance company declaring they won’t cover TA’s clavicle surgery… I said to TA, “Welcome to my world. The world of your second full time job which is dealing with the health insurance company and getting them to pay for shit they’re supposed to pay for.”

I’m pretty sure the appeal will not be too complicated given that the surgery was recommended by 1) the orthopedic surgeon in the emergency room after TA’s accident, 2) TA’s primary care doctor who saw him 5 days after his accident, and 3) the chair of the Orthopedic Surgery department at NYU who actually performed the procedure.

Oh my god, living in the United States sucks.

I'm one week out from my second infusion, and I think it’s not working. I mean, it’s working a bit, but I still feel awful in the mornings and evenings -- like the Tin Man with no oil can. It fucking sucks and I am over it.

After the first infusion, I felt pretty good but it could be that I still had Prednisone in my body and that's why. I have to wait three more weeks for my next infusion -- and in that time, I imagine I will feel progressively worse as each week passes -- and I'm seriously wondering if it's even worth it to wait. I'm going to talk to my rheumatologist this week to see what she thinks.

When the doctor prescribed this course of treatment -- which was, if you remember, not her first choice but the option covered by my lame-ass insurance -- she said, "If this drug doesn't work, then we'll know for sure that your body is done with this class of drugs, and we'll have to move on to another class." I don't want to spend another six months waiting to see if a drug is working if I feel like it isn't. I think her hunch that my body is done with this class of drugs is correct. I think it is.

Which means I may have to suck it up, and find an extra $800/month for the drug my doctor originally wanted me to take and that my insurance doesn't cover. Fucking hell.

Meanwhile, we just paid our taxes, i.e. we are entering what TA calls the “Doomsday Scenario” when it comes to our finances, and the medical bills are going to start piling up even higher because… TA had a gnarly cycling accident two Saturdays ago. Thank god he didn't collide with a car, but he did enough damage on his own that I have no fingernails left and a new gray streak in my hair. He spent 4 nights at a hospital in nowheresville, New York (3 of those in Intensive Care due to a punctured and collapsed lung), and came home with two broken ribs, a fractured clavicle that needs surgery, road rash up and down the left side of his body.

Thank god I am not squeamish and know what it is like to be in terrible pain. I have been changing his bandages twice a day, keeping him on a pain medication schedule (and writing everything down in a little notebook,) feeding him bland foods and making him fiber shakes to counterract the effects of his daily opiate cocktails.

Thank god, too, that we have friends. One volunteered her firm’s car service to take me to pick up TA and bring him back to Brooklyn. Another friend sent us flowers, and still another sent us mac n cheese. The cycling community that TA belongs to has been amazing as well -- one guy recovered TA's bicycle (which was being held in a NJ police station,) fellow riders sent emails and texts, the president of TA's cycling club sent him a get well card and book, and one of his cycling friends got him an appointment with the Chair of the Orthopedic Surgery department at NYU.

We are a fine pair of broken down mules, but we have each other and a tremendous support network.

My first infusion is going to take place next Friday, at 8:30 am. The second one will be on April 20th, and then the third will be on May 18th. Apparently, the first three treatments have to be scheduled in this particular way with two weeks separating the first two, and four weeks separating the second and third.

After these three visits, the doctor will decide if I should be on the 6-week or 8-week rotation for infusions. I'm really hoping she goes for the 8-week one but everything will depend on how I react to the new medication. There's no guarantee that my RA will respond to it, but of course I'm holding out hope. I have to be optimistic.

Meanwhile I am busy as usual, a bit manic from the Prednisone so not quite feeling like myself but at the same time feeling more like myself than before, when it took me 3 hours to get moving and I felt most of the time like a rusty old tin man.

Last weekend I took a yoga workshop that had very little actual asana (thank god, because there's no way I can get on my mat right now), but was actually more about using yoga's ancient teachings to craft a mission statement for your life. It's based on this book, and I have to say it was pretty useful. The meditations were terrible for me -- sitting still for any stretch of time allows my joints to freeze up, very painful -- but the writing and other stuff was pretty great. I left feeling a lot clearer about what my Dharma is, and actually took away some valuable tools for staying on track. Of course, we're only 1 week out so the lessons are still resonating. Talk to me in a month…

Lots of things on the horizon, but I feel like it's a bit too soon to share here. I don't want to jinx anything!

So it looks like it’s going to take at least a couple more weeks to get my medication situation worked out. I wish I could say that I’m weathering things with grace, but more often than not, I’m stamping my feet, gnashing and grumbling about how fucked up this country is.

It serves no one, especially not me, to behave this way. Do you think my already overtaxed immune system needs this? My inner 13 year old just can’t deal with how UNFAIR it all is, how utterly ILLOGICAL and unnecessarily TIME-CONSUMING, and how much it SUCKS to be treated like a CRIMINAL trying to get one over on the insurance company who already charges me SO MUCH MONEY.

Thanks to the miracle of Prednisone, I have lived the last week mostly like myself. My hands have functioned, my shoulders have worked, I’ve been able to wash and comb my own hair, and button my own pants. Like a big girl! I’ve managed to deal with the steroid-induced bloating, puffiness and scatterbrained lack of focus with surprising aplomb given how crabby and peevish the drug usually makes me.

But all good things come to an end, and as the dosages wind down, I can already feel wicked old hunchback rheumatoid arthritis creeping in, poking me with her bony finger, making me move like a brittle stick figure. I managed to do a little yoga yesterday, for maybe 5 minutes, and that felt good. My wrists were wonky so there was no dog to plank to chaturanga, but there was some dogging and forward bending.

I sincerely hope I can get answers on two drugs in the next two weeks so that I can finally make a decision (and don’t even get me started on the fact that I am making my treatment decision based on COST rather than on the DOCTOR’S RECOMMENDATION…) One drug is formulary (mostly covered,) one drug isn’t. The formulary one is an in-clinic 2-hour infusion delivered every 8 weeks (pain in the ass); the non-formulary is an at-home injection once a month (not as big of a pain in the ass.)

I think part of the reason I am so anti-infusion is that in my mind, infusion treatments are reserved for truly sick people, and I don’t think of myself as sick. I have never self-identified as a sick person -- not when my asthma was really bad, not even when I was first diagnosed with RA -- and it’s a little bit of a mindfuck, if I’m being perfectly honest, to sit with the idea of going to the hospital every 8 weeks to have an IV attached to my vein for 2 hours. Every 8 weeks in hospital for the rest of my life or until they come up with a different delivery system, or I can afford something else, or I go into magical remission, or I die.

Of course, I also object to the 2-hour infusion time because it will actually consume 4 hours of my time (2 hours sitting around a hospital with an IV in my arm, plus the 2 hours in commute time from Brooklyn.) Four hours every 8 weeks sounds ok on paper, but I just know that in practice, it will be less tolerable. Especially when you calculate 4 hours every 8 weeks for… forever.

Time for some meditation, I think…

Saw my rheumatologist yesterday. I nearly cried in the consultation room. When she asked me how I was doing, I said “I’ve been better,” then stammered and added, “Actually I’m fucked up and I feel totally disabled.”

Well, that got her attention.

I’m on another 9-day course of Prednisone (yep, get ready for moodiness, bloatedness, grumpiness and random ’roid rage) while we sort out which drug my insurance will actually pay for. It’s looking more and more like I won’t be giving myself injections at home, but going to the hospital every 8 weeks for infusions.

I could go on and on about the state of healthcare in this country, but a tirade isn’t going to help. What is going to help -- I hope! -- is calling the hospital’s patient assistance program to see if I qualify for additional support. My rheumatologist’s admin is going to do the same so we hit them on two fronts.

I can’t wait to feel better so I can continue getting my French paperwork in order and leave this idiotic country for one that doesn’t penalize you for having a chronic disease.