A Tough Week

Mar 30 2013

There’s a good chance I’ll delete this post at some point, but for now here it is…

It’s been a tough couple of days.

Backstory for the uninitiated: I’ve been fairly severely overweight for most of my life, but it’s gotten significantly worse in the last five years or so. I’m also not as young and resilient as I used to be, so my body is starting to show signs of the long-term effects of obesity (namely high blood pressure and severely fucked-up lower joints). Back in August I decided to get really serious and do something about it. I went to an appointment at my family doctor’s office, and since my doctor was out of the office I saw one of her colleagues, who recommended that I try my local hospital system’s weight management center.

I went into the first meeting bound and determined to make this my one shot, to really get my act together and get my weight under control. The program, which I now refer to as The Shake Diet, basically consisted of giving up all real foods for up to six months and replacing them with meal replacement shakes. I figured it would be worth it, that I could handle six months of nasty shakes if it meant making a huge difference in my health and well-being. I did pretty well, despite the shakes tasting awful and being horribly expensive. I made it three weeks.

The program is medically supervised, meaning you see the program nurse once a week for a health evaluation, and once a month they do a battery of blood work to make sure your system is handling the changes okay. I had my first blood work three weeks in, and the next day I got a panicked phone call from the nurse. My kidneys (well, kidney–I only have one, but that’s another show) had almost completely shut down. I stopped the Shake Diet immediately, and what has followed has been six months of constant blood work, doctor visits, new medications (including a six week adventure with Prednisone which I hope to never repeat). My nephrologist* was optimistic, thinking that my kidney had suffered some temporary trauma and that with time and medications I’d bounce back.

*that’s a kidney doctor, for those of you keeping score at home

Here’s the thing about being a chronic kidney disease patient: I have a standing lab order on file at my local lab, and once a month I get tested. It’s like my Big Monthly Exam, and it’s basically pass or fail. The big test is the serum creatinine test, the major test used to measure the function of your kidneys. A “normal” creatinine level is 1.5 mg/dl or below. Over the course of this journey my creatinine has spiked as high as 4.1 mg/dl, and last month there was a glimmer of optimism as I dipped back to 2.6. This month I spiked back to 3.7. In other words, I failed my Big Monthly Exam.

Three months ago my doctor sat me down and gave me a dose of brutal honesty: I’m probably headed for a kidney transplant. We’ll do what we can to stave it off as long as possible, but she’s been honest that I need to start preparing myself for the inevitable. I’ve been asked to start saving the veins in my right arm for dialysis (no blood draws or IVs in that arm, no blood pressure cuffs on that arm, etc.) and to start identifying potential donors. I’ve also been told to prepare for up to 2-4 kidney transplants in my lifetime, as a transplanted kidney is likely to fail after 7-15 years and need replacing again. Also, apparently the State of Michigan only allows 2 kidney transplants per person, so I’ve basically been told that I need to be prepared to establish care at the University of Wisconsin transplant program–one of the top transplant programs in the country–because they don’t have the 2-and-done rule.

Here’s the bizarrely ironic part: at this point no one will even consider me for a transplant evaluation because of my weight. Yeah…I can literally hear The Fates laughing at me.

This is all well and good. There’s nothing I can do to change it, so I’m just kind of rolling with it. It’s big and awful and scary, and I’m probably doomed to spend countless hours of my life wandering the halls of various doctor’s offices and hospitals. Ya gotta do whatcha gotta do, as the saying goes.

More backstory: Last spring I had a chronic cough that basically took over my life for about two months.  I didn’t have a primary care doctor–a few years ago my primary doctor went through a family crisis and ended up having to skip town and move back to Montana in a hurry, leaving his patients hanging. I went to urgent care and had my cough looked at, and the physician’s assistant basically shrugged, wrote me a scrip for Tesselon and sent me on my way. Ze Tesselon…it did nothink. So I made a bunch of phone calls, and finally ended up having to throw up my hands and call my insurance company for help. The rep at the insurance company was surprisingly helpful once she heard the hopelessness in my voice, and she connected me with the office of Dr. Krista Hillman, my new primary doctor.

I can’t even tell you how much I love this woman. She’s a third-year family medicine resident fresh out of med school (she’s actually younger than I am) and she’s amazing. She’s so much fun to talk to, and refreshingly candid and honest for a doctor. Her office staff is equally awesome. I mean, I’ve never been able to walk into a doctor’s office and have the receptionist just know who I am and say “Hi!” They’re organized and efficient, they communicate well with their patients, and they’re fun to deal with–pretty much the antithesis of every healthcare entity ever.

 But yesterday, something Earth-shattering happened.

I went in for a two-month “Hey, what’s up” meeting with Dr. Hillman (and to get some paperwork completed for HR at my employer), and we had a pretty lengthy talk about my kidney stuff and my weight loss needs, and we had a pretty candid talk about my failings at weight loss and strategies to combat them. Dr. Hillman acknowledged all my failings as being completely normal and expected, and never once did I feel shamed or embarrassed. I felt like a human being, dignity and pride intact.

Then she asked me the magic question. “So how are you dealing with all of this stuff, emotionally?”

Not well? What ensued was a long conversation about how I’ve always felt like I’m living my life as An Other, and how that feeling was now more intensified by the impending medical drama I’m about to go through. We also talked about how I’m not a big believer in psychotherapy or counseling, and I felt totally validated. But I was downright shocked that she was able to pick up on my lack of emotional well-being without me even talking about it. And then she offered to help. She wrote me a scrip for Zoloft, and she’s going to keep checking on me monthly-ish.

So that’s where I’m at.

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A Sea of Red

Mar 26 2013

For those of you connecting to ambient wifi networks from under the nearest rock, this morning the Supreme Court held oral arguments in the first of two cases involving marriage equality, Hollingsworth v. Perry (commonly known as the Proposition 8 case). The case seeks a determination on whether or not California’s constitutional amendment banning same-sex marriage is a violation of the United States Constitution’s equal protection provisions. I am not a lawyer, so I’m not going to comment on the constitutional aspect of the case or on the standing issue…What I will comment on is this: I’ve been flattened by illness this week and consequently I dragged my sorry ass out of bed about 10:30 this morning, and as I normally do, I clicked over to Facebook. As you all know, it’s common practice on Facebook for people to change their avatars to various ribbons and things to support various causes. For the SCOTUS marriage equality fight the chosen avatar du jour is a red and white equal sign. This morning my Facebook feed was *full* of red equal signs. I suppose that isn’t surprising. After all, Facebook is for your friends, right? And I would be hard-pressed to find a reason to be friends with someone who doesn’t support marriage equality.

Two things, though, surprised me:

  • I have a friend who’s an attorney and who’s much more in tune with what’s going on in the federal courts than I am, and his first comment on the situation was that although he sympathized with the red = movement, he hoped SCOTUS would never be swayed by public opinion. And he’s right–I have my own concerns about the impartiality of the Supreme Court and how it’s largely become an ideological body in the last few decades.
  • I have a coworker who is…well, he’s kind of a fratboy. Don’t get me wrong–we have the same sick sense of humor and we share opinions on a lot of different issues. He’s actually one of my closer friends and one of my favorite people on Earth. He’s far more enlightened on political/equality issues than the average person and has gone on the record as supporting marriage equality before (which is one of the major reasons why we’re friends, but I digress), but still…he’s a fratboy who associates largely with fratboys. He stands to gain absolutely nothing from declaring support for his LGBT friends, and given geographical and ideological concerns around here, I’m willing to bet his Facebook feed wasn’t exactly full of red =’s today. Still, when I clicked over to Facebook he had changed his avatar to a red =. 

My first friend is right. I highly doubt Justice Kennedy logged into his Facebook account this morning and found himself swayed by a sea of red =’s, and if he did I’d lose respect for him as a jurist. The point of the Supreme Court is to do what’s right, not what is popular. Even something has 99% public support, if it’s unconstitutional it’s unconstitutional.

…and yet, the red =’s aren’t for the Supreme Court. SCOTUS will never be swayed by public opinion and they never should be. The red =’s are for me. The red =’s are reassurance that even though it’s my neck on the line in front of the Court, there are people behind me. It’s my reassurance that I can walk into work tomorrow morning and I don’t have to live in constant fear that I’ll be found out. It’s my reassurance that in my cubicle, I’m safe. It’s my reassurance that when I walk into a public space, as long as I have friends with me, I’m safe. It’s reassurance that no matter what SCOTUS finally decides, I’m still a human being deserving of love and respect. It’s a reminder that if Proposition 8 were to come in front of the California electorate tomorrow, it’d go down in flames.

It’s been an emotional day. I have no idea what SCOTUS is going to do with Hollingsworth v. Perry (although if I were a betting man I’d say the 9th Circuit’s ruling stands based on the standing issue alone). I have more hope that tomorrow when United States v. Windsor comes up, the Defense of Marriage Act is going to be shredded.

But either way, I have hope.

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Begin at the Beginning.

Mar 09 2013

This will be at least the third or fourth personal blog I’ve started. I have a love/hate relationship with blogging. I love having a platform to put thoughts on paper and get feedback on them, but I hate the sense of obligation that comes with blogging. I hate feeling compelled to write something on a regular basis to keep people coming back. I hate the sense of obligation to write something lengthy, pithy and interesting–most of my interesting thoughts are one-liners that require only a modicum of explanation.

I suspect that it’s odd that I’m starting this blog now. Early spring is my least favorite time of year. From mid-February to mid-March I’m decidedly maudlin, depressed and perhaps even a little angry. I’m no fun to be around, for sure. From mid-February to mid-March there is a confluence of holidays, observances, and anniversaries that all combine to make me an emotional ball of goo for just over a month, and there are four days in that timespan where I would rather just not get out of bed if I don’t have to. This year has been the worst I can remember. Instead of letting my emotions slowly eat me alive from the inside I’ve decided to start letting them out, and I need a place to do so.

I love Twitter. I love it irrationally, and I would love for it to be a one-stop-shop where I could interact with *all* my friends all the time, but it’s not meant to be. Twitter is a strange beast, and sometimes 140 characters isn’t long enough to say what needs to be said. Until recently I’d had a steadfast rule that I didn’t allow coworkers or “real-life” friends to follow me on Twitter, but as Twitter becomes more and more mainstream I’m drifting away from that. This inevitably leads to a sense of having to be a fake version of myself designed to please other people. Besides, I feel a sense of obligation to be happy-go-lucky and agreeable on Twitter all the time. I regularly unfollow–or quietly stew about–the Debbie Downers on Twitter.

Facebook…don’t even get me started. I have two Facebook accounts: one for the “public” me, filled mostly with “friends” I feel obligated to be friends with, and one for just a select few friends I actually care about. But if I posted on Facebook as often as I really wanted to, I’d be that jerk who’s spamming your Facebook wall six times a day with maudlin song lyrics, whiny observational posts about how shitty my day was, or Facebook posts that obliquely reference other Facebook friends*. The problem with Facebook is that it comes with a built-in audience, and they’re all people who know me, so I feel a sense of obligation to live up to being the person they all know and the friend they all deserve.  I’ve found that lately all of my Facebook posts have been specifically designed to elicit a reaction from others–and are often aimed at eliciting a reaction from one specific person or another–and that if I don’t get said reaction I’m decidedly disappointed about it.

*I’m told that on Twitter this phenomenon is called subtweeting, so I guess on Facebook it would be subfacebooking?

And so, I once again throw caution to the wind and declare that today I shall blog, and I shall blog my way. I will no longer feel obligated to write pithy thousand-word treatises on the human condition, and I will no longer quietly hate myself for starting a blog and then abandoning it. My blog, my terms.

 

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