Tuesday, February 16, 2016

Money Honey

     It's very, very hard, even with the distance of a week, for our emergency room trip last Thursday to not feel like a defeat. We've made it eighteen months, give or take, without having to resort to such measures, and that was a pretty significant thing. And then, at the worst possible time, my husband wasn't able to walk without holding on to something for support, and he hadn't slept in over 48 hours because of the stabbing pain in his spine and pelvis.

     I took him to the Barnes ER, which was the first time we've been there since arriving back in Missouri. They've redesigned it, which was nice, and they got him back fairly quickly, which was also nice. Granted, he usually gets called back in a hurry anyway, relatively speaking, when they learn his medical history, but it's not a given. The various doctors he saw all knew what Marfan Syndrome was, which was huge, because it meant he didn't have to try and explain not just what it is, but why it's causing the current problem. The orthopedic resident was able to get in touch with my husband's regular spinal specialist's office and consult with them about his treatment, which was absolutely great. So, for those things, I'm grateful.

     I couldn't stop thinking, though, about what this one visit meant for our future. A huge part of our current stress level is that I have no idea whether or not he's actually insured. His former employer fucked up and transferred both his information and mine, because he used to carry me on his insurance, to their new carrier, even though he didn't work there anymore. How they did that, I don't know, because he never enrolled, but that's beside the point. The fact remains, he was enrolled, but hasn't been paying his share of the premiums, because again, he doesn't work there. This clerical error was discovered when my husband tried to sign up for COBRA and couldn't, because he was listed as employed. No amount of phone calls and emails to both his former employer and the insurance carrier have thus far been able to get this resolved.

     Why does it matter so much, you ask? They have to treat him at the emergency room if he shows up, right? Well, yeah, but where do you think that bill's gonna go? And really, I should say that it's "bills", plural, because there are going to be at least three, maybe four, because they did labs on him. A lot of people don't realize that there are usually three bills whenever you go to the ER, depending on if you have x-rays done or not - the actual facility bill, which is what you get charged for being in the building and using their stuff. Then you have a separate physician bill, because many ER's use a physician service and bill for their time separately. Then, if you have x-rays done, you're going to get a separate bill from the service that read and interpreted the x-rays. Oh, and also possibly a bill from the laboratory than did your bloodwork, if they sent it out for tests. So there's that.

     I know from both personal and professional experience that this was easily a $5,000 trip, probably closer to $10k, because not only did they do multiple x-rays on him, but then they needed a CT; if he wasn't full of metal (spinal fusion with multiple titanium rods and titanium aortic valve), I'm sure they would have shoved him through an MRI as well. That would've been another $2,000-$4,000.00, but that's a bridge we don't have to cross, so at least there's that.

     You know what's the leading reason people find themselves filing bankruptcy, at least according to the info I can find? Medical bills. Lots and lots of medical bills. When we first moved to North Carolina, my husband was covered under the health insurance offered by his employer, but we still ended up with thousands of dollars in medical bills after he was hospitalized for a month. We were not out-of-network, and no procedures were denied coverage, but the best his company at the time offered was a high-deductible plan that then only covered 90% once that deductible was satisfied. What did that mean for us? It meant we had to pay $5,000 right out of the gate before the coverage would even kick in, and even then, we were responsible for 10% of the total bill. The month of July in 2013, it cost over $45,000 to keep him alive because he was so sick with...something.

     Yeah, that was kind of the final "get bent" cherry on the sundae - after all the hospitalizations, visits to specialists, and diagnostics, no one was able to tell us what was going on. And at the end of the day, we were left with almost $10,000 in bills. We've been paying on them ever since, and have gotten the balance down to around $1700, which I'm pretty damn proud of, but now? Now, we're both terrified to open the mailbox, because there are probably some pretty hefty bills on their way. I can't even begin to guess what they're going to look like, because of his current health insurance tangle. Will they accept the charges and send us the balance? Will they realize during processing that he's not actually covered, and deny the whole visit? Will I actually go insane from trying to figure a way out of this mess? Tune in next time, kids, for the answers to these and other questions you never asked!


Wednesday, February 10, 2016

Hey, Hey, What Can I Do

     Sometimes when I sit down to post something, what comes out doesn't necessarily make as much sense as it does in my head. I think that's what happened with my last post, because I got off track somehow. I fully intended to talk about Marfan Awareness Month, because it's a big damn deal to my husband and I, for obvious reasons, and somehow ended up...not there.  It is Marfan Awareness Month, though, and since my husband and I started our life together, I've come to realize that "awareness" can't just be a passive thing.

     Honestly, the whole idea of being aware of various diseases and disorders used to confuse me on a good day, and annoy me on a bad one. Why would I have such a pissy attitude towards it, you ask? A big part of it is my personal experience growing up with a father who's a cancer survivor, and two aunts and an uncle who were not so fortunate. I just lost my aunt and godmother, Connie, a few months ago, and it still hurts. It will never not hurt, I think, because we lost my dad's brother, my Uncle Lee, fifteen years ago, and there are still days when I can't look at a picture of him without feeling the loss. I don't like having that murderer (cancer, not my uncle) shoved in my face every time I turn around and see another ribbon on another tee shirt. That's a terribly selfish reason, but it doesn't change what is.

     For the longest time, I took the same approach to Marfan Syndrome, because it's caused no end of heartache in my household, and I can assure you, it's nowhere near done with us. It wasn't too bad in the beginning of our relationship, because he was relatively okay then. A few pills every morning, regular visits to the doctor to keep his INR in check, and we were good to go. Out of sight, out of mind, you know? The past couple of years, though, his health has just gone down and down, and there is no part of our day in which it doesn't make its presence known. Subconsciously, I probably figured, "I'm aware, okay? I am very, very aware, so let's move on to something else," and I can't allow that to continue. Not for the sake of my husband, myself, or anyone else living with this disorder.

     The giant flaw in my internal argument, I eventually found, was that if no one knows what the hell Marfan Syndrome is, no one is going to realize it's a problem. And yes, I know there are those who don't view it as a "problem" and may take umbrage with my word choice, but from my personal perspective, it is very much a problem. I'm a strong believer in education of all kinds, for all people, because ignorance leads us to nowhere but a dead end at best, regression at worst. Therefore, if I were to actually start trying to educate people on what this disorder is, how it affects people, it would theoretically push us in the opposite direction, towards progress, yes?

     We need it, guys. Not necessarily so much on the medical end, because I feel like the most dire issues are under control, but on the everything-else end, especially. It's a chronic, degenerative, debilitating disorder, and the havoc it can wreak on your life is no joke. My husband and I are currently trying to figure a way out of the corner we've been backed into, and every possible solution circles back around to some health-related snafu. Figuring our how to live with Marfan's has been an increasingly difficult puzzle to solve, and every time we've found two pieces that fit together, five others show up with no place to put them.

     This is a conversation that needs to be had, and regularly. We have got to become more aware of our surroundings, of the problems we face, of each other, because the only way out is through, as far as I can tell.

Tuesday, February 9, 2016

Learn to Fly

     I know, my last post was less than pleasant. Things have calmed down a bit since then, but we're still nowhere near good. It's a mess of an issue that relates to my husband's current job offer, and his future ability to work, but it's still too much of a cluster to begin relaying in a coherent manner. I'll get there, though, don't you worry. Meanwhile - Marfan Awareness Month.

    I'm probably not the best ambassador for Anything Awareness Month, because I tend not to be a social creature in the traditional sense. I mean, social media, yeah -that I can do. I blog, (not as much as I probably should, but I'm still here), I Facebook (can I use that as a verb?), I tweet, and I Instagram. I know there are others out there, but those are the ones I'm comfortable with, and honestly, it's more than enough for me to maintain those few outlets; it's not like I have a giant following or anything. Besides that, I'm just more comfortable behind a keyboard, where I can edit my thoughts before sending them out into the world, because I have a habit of running off at the mouth in person.

     I'm also aware that I'm not everyone's cup of tea, and the things I want/need to talk about as they relate to my husband's disorder are usually thorny things; no one wants to bleed in public, so I've found that this is better. My husband tried once when he first moved to St. Louis to partake in a Marfan-based support group, but found that the majority of the conversation ran to fundraising, fun-day meet ups, that type of thing. That's all well and good, and absolutely an essential part of life with Marfan's, but it's not everything. What he found was a lack of willingness to dig deep into the issues that he was so desperate to commiserate with someone about, issues that people were reluctant to bring into the light. This was disheartening, to say the least, and he never tried again.

     I think, though, that now is the time for him to give it another shot. I've always been aware of The Marfan Foundation, but I never really had much to do with them, until last fall. I decided then that moving back to St. Louis meant that it was the perfect time to reach out to others living with this disorder in some capacity or another. We have some of the best Marfan specialists in the country here in St. Louis, so it's not surprising that there's a fairly active Marfan community here, one which I've been nervous to become a part of up to this point. At this point, I've barely begun to test the support-group waters, but so far, so good.

     Full disclosure - I've never joined any sort of support group, or social group centered around his Marfan's, in part because I knew of my husband's previous experience, and I convinced myself that I wouldn't find what I was looking for, either. That's not to say that I didn't think like-minded people existed - I knew, and know, they do. I receive emails and chat messages from people all over the world, desperate to talk to someone about the ugly parts of what our lives are like. It hurts, physically, to read some of the emails, because I know their hurt, their frustration, their feelings of hopelessness - it's an almost tangible thing for me.

     I'm thinking though, as my husband and I sit here in an increasingly darker hour, that maybe I should look to someone else to help me turn on the goddamn light. Someone, oh, I don't know, WHO KNOWS WHAT THE HELL I'M GOING ON AND ON ABOUT?

      Right now, I'm still pretty passive in this new endeavor, waiting for people to start the conversation for me. I think, though, that this may be the right thing to do, to start making myself a more vocal presence in the Marfan community, and, by extension, my husband. He struggles every day with his disorder, in a hundred ways I will never understand, because when you get right down to it, I'm still the unaffected spouse. The flip side of that coin is that my position is one he can never fully understand, and I think we could both benefit from broadening our horizons, instead of picking at each other until one or both of us loses our minds.

     These feelings are still very much in their infancy, so when I do finally decide to venture out of my corner of the internet, I don't know how it's going to go. We're supposed to be attending the Heartworks St. Louis fundraiser next month, and I have to admit - we're both nervous. I'm more nervous-excited, mostly at the prospect of meeting people to whom I won't have to explain what Marfan Syndrome is. My husband is more nervous-nervous; he's never really come to terms with his disorder, despite the fact that it came over two decades ago, and he still gets twitchy and uncomfortable whenever someone recognizes that he's got Marfan's. So, we'll see what happens.

     My gut feeling, though, is that it's time to stop locking ourselves away and relying solely on one another for support; I think it's time to see if there's another way to go about this.