Thursday, October 24, 2013

The trouble with being a girl. (No, not that one. A different one.)

My house had many selling points when I bought it, neighborhood cemetery and ghosts notwithstanding.

The ghosts were actually kind of a selling point before creepy faces started showing up in the window condensation
One of the selling points was that it boasts two full bathrooms, one on the first floor and one on the second floor.

However, what this statement fails to take into consideration is the fact that, rather than both full bathrooms possessing a tub/shower combination, one bathroom has only a bathtub with no shower (albeit, a cool claw-footed bathtub from the 19th century), and the other bathroom has only a shower stall.

To make this even more inconvenient (considering that I really prefer showering over bathing), the shower is in the downstairs bathroom.

Then add to this the fact that the shower stall in my downstairs bathroom would seem claustrophobia-inducing to someone who lived in a camper.

Photo enlarged to show detail. Actual shower smaller than pictured.
Years ago, I remember debating with a male friend whether women or men have it worse in the parts of our bodies that we are expected to shave, wax, or otherwise render hairless. His weak argument was that men's faces and necks have contours and ridges where it's easy to accidentally nick the skin, and shaving is therefore worse for men.

I call bullshit on this argument, for many reasons.

First of all, shaving is often optional for men, as facial hair is often seen as attractive on a man. (Yeah, yeah, shaving is optional for women, too. Unless they want to wear a skirt. Or shorts. Or a sleeveless top. Or a bathing suit. And it's all very well to say that it's still optional, but find me anyone, man or woman, who would actually find a woman with caveman leg hair wearing a skirt attractive. God, you are so full of it.) Meanwhile, men can not only sport a full beard and moustache and still be considered socially acceptable, they can also just skip shaving for a few days. Stubble is also often seen as attractive on a man.

Women simply do not have that same luxury.

Secondly, there is the issue of surface area requiring to be shaved. Admittedly, some men are hairier than others, and so feel compelled and/or have it requested of them by significant others to remove hair from other areas of the body besides the face, such as the back. However, body hair removal still isn't really compulsory for men the way it is for women, and as such, men generally have far less skin that needs to be shaved than women do. Not only are we girls expected to shave our legs, we are also expected to shave underarms and the bikini area, at minimum. Let's not even go into what women who are not of Scandanavian descent have to go through, shall we?

Finally, for a man to shave his face requires him to simply stand up straight and move his head around slightly while also moving the hand that is holding the razor and coordinating these movements. He can even do this in front of a mirror, so presumably, this will reduce the likelihood of unfortunate nicks and cuts.

Women, on the other hand, have to twist and bend and perform feats of acrobatic skill, and try to reach places that we can't even see so that we can run a sharp object that is designed to cut things over the skin of the most sensitive areas on the body.

All of this was true even before I moved into my house, back when I had a full-size shower/tub combo in which it was not nearly so difficult a task.

In my tiny little shower stall, shaving is an acrobatic feat of Olympic proportions, and I deserve a goddamn medal every day that I actually choose to shave my legs.

I expect I'll be getting that medal in the mail any day now.

Thursday, October 10, 2013

The Truth is Out There

Some time back, maybe a year or so ago, Netflix recommended The X-Files in my "watch instantly" feed. This was a reasonable suggestion, because, aside from the atrocity that was the last season, The X-Files was among my favorite TV shows once upon a time. At the time that the show was actually on, the last season kind of soured the whole experience for me, but there were still episodes and scenes that I remembered fondly. So I took Netflix's suggestion and watched an episode. And I was immediately sucked back in, because I was suddenly able to remember back before the last season to why I used to love this show so much. Despite my interest in the paranormal, it was never the sci-fi plotlines that kept me watching.

It was Mulder, of course.

If I'm being fair, it wasn't just Mulder. The whole Mulder/Scully dynamic was a big part of the show's appeal for me (and I'm guessing pretty much all of the show's other viewers), and Scully was an awesome character on her own merits as well. (Although her skepticism eventually got kind of old. I mean, questioning your assumptions is healthy, but at a certain point, if you've seen that much freaky, unexplainable shit, and you're still insisting that there must be a perfectly rational, non-paranormal explanation, you're just being stubborn.)

While I am grateful that Netflix refreshed my memory that there really was a reason that I used to adore this show, having the chance to rewatch it has made me realize a couple things.

The first is that the so-called "mytharc" episodes - the ones relating to the government conspiracy about the existence of aliens - really hold no interest for me anymore. Though these episodes once had me riveted and glued to the screen, their power was in not knowing what secrets were yet to be revealed. Now, not only do I know, I also know that Chris Carter was pulling all of it out of his ass with each episode. (I may still be a little bitter about that last season.) Now, with a few notable exceptions (most of them season finales or premieres, like Anasazi or Biogenesis, or episodes that had some kind of impact on Mulder or Scully or their relationship, like Emily), the mytharc episodes bore the hell out of me. I already know how it ended, and what's more, I hated how it ended.

So the stand-alone "monster of the week" episodes are totally where it's at for me, and honestly? Those never get old. I could watch Rain King or Post-Modern Prometheus over and over again. But that brings me to my second realization.

You see, the show's original run lasted from the time I was 14 until I was 23. That means that I was watching it during what were arguably the most formative years of my life. And I realize now that it totally fucked me up.

I have read claims from a couple different sources that the term "unresolved sexual tension" was actually first coined for this show, though I have not been able to verify this. It would make sense, though, because when you get right down to it, the show was not really about monsters and aliens at its core. It was about Mulder and Scully, and their relationship.

Or, rather, their lack of a relationship.

Because it was EIGHT. FREAKING. YEARS. of unresolved sexual tension before Mulder and Scully actually consummated their relationship.

And what episodes like Rain King and Post-Modern Prometheus had in common was that they played on that unresolved sexual tension (or UST, if you will), keeping up a constant "will they or won't they" dynamic. By the time they actually kissed onscreen for the first time, it was almost anticlimactic, because everybody already knew that they had been in love with each other for years, and that there was no way either one of them could be with anyone else.

I realize now that those eight years of UST are the reason that I actually believed for my late teens and most of my 20's that years of sexual tension really could eventually pay off and develop into an actual relationship.

This was very likely the cause of most of the misery I experienced during the first decade of my adulthood.

It's all Mulder and Scully's fault.

And here I thought that I could believe in them. It just goes to show that Mulder's philosophy was right all along: Trust no one.

Sunday, August 18, 2013

Dramatic irony. It'll fuck you every time.

Last night, I had a dream that I was dying.

It was pretty vivid, this dream. It felt pretty real. And it may sound like it was a nightmare, but it wasn't. Not even remotely.

Oh, don't get me wrong, it wasn't a wish-fulfillment dream, either. Even though there have been times in the last couple of years when a terminal diagnosis would have seemed like a blessing compared to the actual chronic diagnosis I received. I am past that now. I have found new reasons to move on with my life, new things to look forward to, and work toward. Although it would be fair to say that some of those reasons and things feel like consolation prizes sometimes. As I've said before, I'm not a saint, and as such, I'm not the type of person who would feel satisfied devoting my entire life to meeting other people's needs while completely sacrificing my own desires. Sometimes that feels like what I'm being led to do. That said, I wouldn't be happy living a completely hedonistic life devoted only to my own desires, either. But my point is, I have reasons to get out of bed every morning now. This is something that I could not necessarily have said, even a year ago.

Which may be exactly why this dream felt so real to me. Because, given my past history, it seems like exactly the kind of thing that would happen as the pieces of my life are finally falling back into place. Hence the title of this post - it's my favorite line from a favorite movie of mine, about a man who finds out he's probably going to die, just as he's really started to embrace his life (albeit, under much stranger conditions than those in my dream).

I don't know what I was dying from in the dream. I just had a vague sense of increasing weakness and dizziness and fatigue, which really could be just about anything.

What was really striking was my reaction to the knowledge that I was running out of time.

There was no denial, or bargaining, or even depression. My acceptance of my fate was immediate and absolute.

There was, however, anger. Lots and lots of anger. And with that anger came determination and a sense of purpose.

Recently, in the context of a discussion about how being angry is easier than being sad, I made the point that anger can serve a useful purpose, because it can keep you fighting when otherwise you'd just give up. I know this, because I've lived it. Anger can go too far, obviously, and become unhealthy, but it can also be fuel to survive from one moment to the next.

And this was the case in my dream. I remember that I was angry about the fact that I wouldn't finish school, after having devoted this much time and energy to it, and to the goals that I wanted to accomplish once I had my degree. But this anger didn't lead me to drop out. It kept me going to school, trying to soak up as much knowledge as I could about the subjects that have always interested me, in what little time I had left.

In another part of the dream, I was touring a mansion that (in the dream, anyway) I'd always wanted to see. I was weak and exhausted after walking around the first floor, and as the people with me went to go up the stairs to see the second floor, one of them told me sympathetically that they wouldn't mind if I sat down and rested downstairs instead of going upstairs with them.

This just pissed me off, and I pushed myself to follow them up the stairs, even though I felt like I was going to collapse with each step. Because, I remember thinking, this may be my only chance to see what was upstairs.

Not too long ago, I was talking to my mother about those first few months of illness, when I was struggling to find treatments that worked. During that time, I usually worked myself to exhaustion just trying to keep from falling further behind. It often felt like all I did was work and sleep. My house was a disaster because I did not have the energy to deal with it. On rare good days, when the pain was minimal, I tried to fit as much work and play as I possibly could into them, and I usually paid for it, as it left me completely drained and exhausted and took me several days to recover from. It was rough, and I wondered at the time if I would ever be able to balance work and pleasure in my life again.

When I said all of this to my mom, she said, "You get that from your grandfather. He's the exact same way."

It was an insight that surprised me. Not the observation about my grandfather, because it's common knowledge in my family that he always wants to be doing something - fixing, building, cleaning, something - and it's been hard on him the past few years that he hasn't been up to it. It was the observation that I shared this quality with him. It had never occurred to me before that I might be like him in that way.

I think it didn't occur to me partly because it was never physical with me the way it always was for him. You wouldn't find me willingly climbing ladders to paint over chipping woodwork, or doing loads of other people's laundry and carrying them from the basement to the second story, or asking my dad if I could borrow his tractor to mow someone else's lawn. When I do anything along these lines, it's in my own house, and only because it needs to be done (and in the case of yardwork, I pay a neighbor to do it for me). I'm not looking for opportunities to do any of it elsewhere.

It's also because I guard my leisure time pretty jealously. I always have. I never lived to work; it was always the other way around. I kind of resent the idea that 110% is the minimum standard anymore - that if you're not putting in a certain amount of overtime or signing up for extra shifts, or if you leave immediately at the end of the day, you're somehow not a good enough worker. I'm with Office Space on this one - if you want me to wear 37 pieces of flair, then make 37 the minimum. And honestly, in the social services field, I don't think my view is a bad one. Self-care is extremely important when you work in a stressful field (especially one that doesn't pay well), and it's not always encouraged by employers and supervisors in the field. At least, not in practice. They talk a good game, but when it's between the numbers and self-care, you are implicitly expected to have your problems on your own time, even if you don't have any of your own time left. But, as usual, I digress. And to be fair, when I work, I do work hard.

I think the biggest difference between my grandfather and me is that he suffered because he was no longer able to work, and I suffered because I was no longer able to do anything else, when I was able to do anything at all. But ultimately, my mom was right. It was two sides of the same personality trait.

And it's the same personality trait that has allowed me to maintain a 3.95 GPA over the last two semesters, despite the personal struggles I was going through. That, along with anger.

The same anger that was fueling me to keep moving forward in the dream, even knowing the end was in sight, even knowing that I wouldn't accomplish my goals in the long run, even knowing that I was driving myself to collapse.

So, no, it wasn't a nightmare. It was simply a reminder that even when things are at their most dire, I can still keep putting one foot in front of the other.

Saturday, August 3, 2013

"When are you going to get married?"

When I was in the last year-ish of my undergraduate program, I worked for a daycare center that was owned by a hospital, for the children of the hospital employees. Because many hospital employees work odd hours, it stayed open until 8 p.m., which worked well for getting hours around my class schedule - I typically worked from 2-8 p.m. I worked primarily with the 3-year-olds, but when the numbers started dwindling later in the evenings, typically around dinnertime, we would combine the children who stayed later. I closed up 2 or 3 nights a week, so often I would be left alone in the building for the last hour or so with a group of 5 or 6 mixed-age kids.

Two of those kids were an adorable brother and sister, ages 5 and 3, respectively. Seriously, they couldn't have been cuter. Blond and blue-eyed and fair, the boy was very rough-and-tumble but sweet, and the girl could have been a child model (and she knew it) but she was also sweet. They were relatively well-behaved, and when they did act up, it was mostly because they were fighting with each other. (I can still hear the 3-year-old's plaintive whine that I heard at least once every day that I worked there: "Hunter's aggravatin' me!") But overall, they were good kids.

(It just occurred to me that they would now be 17 and 15, and I want to cry.)

The reason I bring this up is because Hunter, the older brother, was always very concerned about my marital status. It disturbed him deeply that I was not married yet, and he often took pains to point out that I was not getting any younger.

For example, one day when he said something about what he wanted to be when he grew up, and I made a joking comment about what I wanted to be when I grew up, Hunter looked at me incredulously, and said, in a wearily patient, matter-of-fact tone, "Miss Natalie, you already are a grownup, and you already have a job."

Since I was only 22 at the time, I was mostly amused by this.

As I was by his attempts to help me find someone to marry. "Do you think maybe you could go to the grocery store and meet a man who was shopping there, too, and you could marry him?" he would ask.

"I guess anything's possible," I would tell him, laughing, before letting the matter drop.

Hunter and his sister's mother was single, and my psych-major self reasoned that Hunter was projecting his anxiety about not having his father living at home with him onto my love life.

Still, truth be told, I kind of took it for granted at the time that I would get married at some point over the next several years. A few years later, when I was 26 or 27, working at my first really professional job, my supervisor, who was a good twenty years older than me, would talk about her boyfriend, whom she'd been dating for something like 17 years. They didn't live together and had no plans to live together. I didn't understand that at all at the time. If they were going to put the energy into maintaining a relationship for that length of time, why not just take that next step? I just didn't get it.

I totally do now. But I'm getting ahead of myself.

In the last 12 years since my conversations with Hunter, obviously, I haven't gotten married.

At some point during that time frame, I ceased to view marriage (or even long-term marriage-like cohabitation) as an inevitability for me. I think it may have been sometime around when I bought my house - on my own, on my income, with no cosigner on the mortgage. That was around the time that I started to realize that I might, possibly, just be able to survive on my own resources in the long-term.

It was also because my house was mine. It was filled with my stuff and decorated the way I wanted it. I did not want to move again, ever. And I kind of couldn't imagine changing it to accommodate another adult's furnishings. And I liked being alone in it. I could see adding a child, and making changes to accommodate said child, but making changes to accommodate a grown man? No, thanks.

It was then that I started to understand my old boss's relationship. I could totally see myself having a lifelong exclusive relationship that would give me someone to go to the movies with and do other grownup activities with when I felt like it, but who would leave me alone in my own house when I didn't feel like it. That would totally work for me.

I haven't ruled out the possibility of marriage entirely, I just see it getting less and less likely. And I'm okay with that. Because the reality is, I hate dating. I hate it with a passion. I hate the whole nervous awkward phone conversations and tiptoeing around sensitive topics to keep from derailing things early on and do you wait until the third date or the fifth date to have sex? I hate it all. And I've rarely made it to a third date, much less a fifth, because on the rare occasions that I have a first date, I usually go home at the end saying, "Oh, hell, no, I am not putting myself through that bullshit again." But that's a whole other post in itself.

There are times when I think it would be nice to have a partner, but that's mostly for practical reasons, like financial security. When I say that, I'm not talking about marrying a rich man for his money. I'm talking about the security of having a dual household income. I'm talking about having the ability to pay all of my bills on time every month, rather than the bill roulette of "which utility is least likely to be shut off this month if I leave it unpaid until next month?" that I currently play every month. It would also be nice to have somebody who I could automatically assume would drive me to my colonoscopy instead of having to call my parents for that.

But overall, those are fleeting moments, and I'm okay with not having those things. I get by. Once I'm done with school, I might even do more than get by. I might be able to save and invest and other grownup things like that.

The real practical benefit I would get from having a husband would be that I wouldn't necessarily have to go through artificial insemination to have a baby. I would still have to use fertility drugs, probably, but the sperm would be free. But if I can pull together the financial means to buy sperm and do fertility treatments, I'm not really worried about it. In the long run, it would only save me about three or four thousand, an amount that could be easily trumped by the cost of a wedding, even if I went the City Hall route. (And I would totally go the City Hall route. Big weddings are a ridiculous waste of money, in my opinion. And I have no princess delusions with the associated need to wear some ludicrously expensive dress. If I must spend thousands on an inane ritual that would really be more about joint health insurance and death benefit eligibility for me (because, all else being equal, I would be perfectly fine with living in sin indefinitely), I would rather spend it on a honeymoon in an all-inclusive resort in the Maldives.)

My point is, though, that I may very well never get married, and I am totally okay with that.

But that has not stopped people from asking me over the years when I'll get around to marriage, as if that's all there is to it, I just have to want it enough, and for that matter, as if it's any of their business. But it doesn't happen all that often, and when it does, mostly, much like my reaction to Hunter's questions, I'm just amused by it. Maybe a touch defensive, because I wish they wouldn't assume that I even want to get married. There was only one time that it ever really irritated me, and that was mostly because the person's tone indicated that I was somehow less of a woman if I was unmarried, and that I apparently had some kind of societal obligation not only to get married, but also to be a model 50s housewife.

But just a couple weeks ago, when we were alone in my car during a visit, completely out of the blue, my 8-year-old niece piped up from the backseat: "Do you think you'll ever get married?"

(Ex-Social Worker Tip for Parents: If you want to discuss sensitive topics with your child, the car is the place to do it - especially if the kid is in the backseat. I think it has something to do with the lack of direct eye contact. Freud may have been onto something with that. But I have had many a deep conversation during long placement transports, and most of them were initiated by the kids.)

Anyway, for some reason this question surprised me coming from my niece, even though it shouldn't have. I asked her what made her ask, and she responded by talking about how one of her other aunts is married and the other lives with her boyfriend, and her uncle, my brother, is also in a long-term relationship. And though it may not have occurred to her, it was certainly glaringly obvious to me that all of these people she mentioned were significantly younger than me, and I felt that defensiveness rise up in me.

But that only lasted for a moment. Because after that moment, I realized that my niece had just handed me a gift-wrapped teachable moment.

So I talked about the life that I'd made for myself, how I'd had a good job before I went back to school, and I'd have an even better job after I graduate. And how I bought my house on my own, and supported myself, and found meaning in my life in ways that did not require having a man in it.

And though I didn't mention it specifically, I hope it was strongly implied that my sense of self-worth (and hers) is not and does not have to be dependent on whether or not I have a man. And that I do not have to lower my expectations or standards and settle for someone who is not good enough for me, just to be able to say that I have a husband, and neither should she.

Because that's certainly not a message she'll get from her mother.

I can, and do, live a completely fulfilling life without marriage. And so can she.

I also talked about how I wasn't ruling it out entirely, and if I meet the right person, I might get married someday. But I made it clear that it wasn't my sole mission in life to find that person. Basically, if it happens, great. And if it doesn't happen, great. I'll be fine either way.

Life doesn't offer many opportunities like that one, and I'm glad I recognized and took advantage of this one. I can only hope that I planted a seed of empowerment in the child that I love most in this world that will continue to grow throughout her lifetime.

Thursday, July 25, 2013

The End. And the Beginning.

(Warning: I'm going to talk about periods again. And again, it's not gratuitous and it's completely relevant, and I'm not going to go into graphic detail. But it's in here.)

Wow. So, this took way longer than I meant for it to. But maybe that's not a bad thing, right? I mean, I really explored all of this in-depth, and gave myself the time I needed to think through how to say what I needed to say.

So, here I am now. In graduate school, pursuing a career path that I meant to follow years ago, but I probably never would have taken that step if circumstances hadn't forced my hand. (Although, as I've pointed out before, there could have been easier ways for whoever is in charge to make the point that I wasn't where I was supposed to be - a lottery win to pay off my student loans and cover tuition, maybe? Especially considering that as it stands now, whatever increase in earnings I will have after graduation will be entirely consumed by student loan payments - which I have accepted that I will be paying until I die.)

In any case, career-wise, things are on track for me. I even have an exciting new project in the works that I hope will end up being a catalyst for huge changes in how service delivery is approached in the mental health and social service field. I have big ambitions, and a vision to follow through on those ambitions. I'm going places. And I can't even regret any of the time that I spent on other pursuits, because every single professional step I took informed what I am seeking to do today. I can see, clearly, how every moment of it was leading to this point.

If you'd told me ten years ago that this is where I would be at 34, and where I would be headed, I wouldn't have believed you.

I haven't accomplished everything that I dreamed for myself as a teenager or a young adult. Career ambitions were not really important to me. I saw myself as a wife and mother, not a single career woman.

But I have accomplished goals that it never occurred to me to set. And they are all things that, had I gotten married and had children before I was 30, I probably would never have done. I definitely would not be on the path that I am now. Because I would have settled into motherhood and not sought anything bigger for myself or in service to others.

But what of motherhood?

I still don't want it any less. I've gotten a little bit better at dealing with facebook pregnancy and birth announcements. I made it through the royal birth coverage without shedding a single tear. But I do still want a child more than anything else in the universe.

And I'm not sure if I will ever be able to go back to adoption, without having had a baby. Right now, I can say for certain that, to me, it would feel like settling for second best, and that would not be fair to any child placed in my care. Maybe five or ten years from now I'll feel differently, if a baby does not come to be in that time.

Of course, it would be completely irresponsible to try to get pregnant right now, even if I could afford the procedure. In school, unemployed, and living on student loans. I'm not stupid or selfish enough to plan to bring a baby into that kind of insecurity.

But I am rapidly approaching my 35th birthday, the use-by date after which my doctor told me I would have less than a 5% chance of conceiving. And I will be 36 before I graduate and re-enter the workforce.

The conventional wisdom with PCOS is that the chances of conceiving are better when you're younger. This is certainly what my doctor has told me more than once. However, in the midst of my struggles over the past two years, I found a small but growing body of research that challenges that assumption.

There was one study specifically, done in Sweden, that claims that women with PCOS may actually have better chances of conception the older they get. Other studies have also shown that the menstrual cycles of women with PCOS become more frequent and regular as they get older, which would appear to support the idea that the chances of conception would be higher.

When I lost my job, I lost my health insurance with it, and as such, I stopped taking birth control, which kept my cycles regular. I had 3 pill packs left, and I planned to use them every 3 or 4 months to have the minimum amount of periods to keep my uterus healthy.

To my intense surprise, I haven't needed to use any of those pill packs.

Last December, when my first spontaneous period started, I figured it was a fluke. But, just as well, I thought, because it was that much longer that I could put off using the birth control I had left.

The second time it happened, in March, I was a little more surprised. This was not something that happened with my body. Clearly, it wasn't a regular 28-day cycle, more of a 3-month cycle if it continued, but going less than a year between non-hormonal-birth-control-induced periods was pretty much unheard of for me.

When I didn't have another period in June, I wasn't surprised. The one in March must have been a fluke, too. And now my body was back to its normal PCOS-defective self.

But then, at the beginning July, it happened again.

I can't emphasize this enough: without being on the pill, I had never gone less than a year between periods, and now I'd had three in a seven-month time frame.

Two could have been a fluke, but three? Is it possible that my reproductive system is getting its shit under control?

Could it be that those studies are onto something, and I don't have to give up on having a baby someday after all?

I don't know. And as I've said before, I'm afraid to hope.

But I still do hope.

I'm not ready to give up on this yet. And maybe I don't have to.

I can't help feeling that, if I am able to have a baby someday, it will make up for all the ways that my body has failed me thus far. Making me feel like less of a woman, because it produces too much testosterone and fucks up my metabolism. Causing chronic pain and making everyday tasks more difficult. Making me feel like a young woman trapped in an old woman's body.

If my body is able to bring a healthy, full-term baby into the world, all of that will be forgiven.

So, I'll finish school, and see where things go from there.

Who knows what the future holds?

Saturday, July 20, 2013

The Turning Point

I just submitted my final paper for my last summer class, which seems like an appropriate time for this post, as it will explain just how I ended up back in school ten years after graduating with my bachelor's.

In the midst of dealing with my not-so-mixed feelings about my sister's pregnancy, I was also dealing with choosing a course of treatment for my arthritis, as steroids are not really a viable long-term option. (I'm actually back on them at the moment, unfortunately, but I'll get to that later.) Because I still had some hopes of getting pregnant in the future, any drug that could not be taken during pregnancy was out for me. This ruled out the typical first line of treatment, methotrexate, which I was okay with because the potential side effects are fucking horrifying, and can cause death and hair loss. I'm not honestly sure which would be worse. Newer treatments that are heavily advertised like Humira and Enbrel have price tags to match their newness, and also have horrifying potential side effects, including a specific reference in the ads for increased risk of fungal infections common in the Ohio River valley, which is, as it happens, exactly where I live. Because these drugs are so expensive, they are not usually used until other medications have failed (and there has not been specific research on the potential effects of these drugs in pregnancy, so they would have been out for me anyway). Many other treatments for inflammatory arthritis that are advertised are actually heavy-duty NSAIDS, which I can't take because of colitis.

This left sulfasalazine as the most viable option for me. It is actually one of the oldest treatments for inflammatory arthritis available, and it is a combination of sulfa antibiotics and one of the ingredients in aspirin. As an added perk, it is affordable even without insurance, which would become important to me later. (However, my rheumatologist visits are not affordable without insurance, as I have had the unfortunate experience of discovering. This is why I am now back on steroids - she refuses to prescribe the sulfasalazine without seeing me, and while I can afford the meds, I can't afford the office visits and blood tests. I'm looking forward to the state healthcare option becoming available. Luckily, I wasn't starting out from a full flare-up this time, so I've been able to maintain a relatively symptom-free state on a relatively low dose of prednisone.)

I want to make it clear, though, that sulfasalazine has some nasty side effects of its own. It was basically the best of a lot of really, really bad options for treatment.

The side effect that has had the most significant impact on my life to date is actually the basic function of the drug: it suppresses the immune system. At the time I started taking this drug, I was working primarily with children under the age of 3, most of whom were in daycare.

As you might imagine, this did not go well.

I actually specifically talked to my rheumatologist about my concerns in taking an immunosuppressant drug while working with children, and she repeatedly reassured me that the effects the meds would have on my immune system would be hardly noticeable and should not cause a problem. I still kind of want to bitch slap her for her casual insistence that it would be fine. She couldn't have been more wrong.

I started taking the sulfasalazine at the beginning of April. From April to September, I had three colds, two sinus infections, and one brutal case of the stomach flu. I was sick more frequently in that five month period than I had been in the previous five years.

To make things even worse, immune suppression was not the only side effect. The drug can also cause debilitating migraine-like headaches and nausea, especially when taken on an empty stomach. Or when taken with too light of a meal. (To give you a frame of reference, a cup of Greek yogurt, two pieces of toast with butter and jelly, an apple, and a glass of 2% milk is too light of a meal.) It also took me a few weeks to learn that taking the medication immediately before eating would not work. It is imperative with sulfasalazine to have a full stomach before taking it, or you will - I repeat - you will pay.

In practical terms, though, what all of this meant for me was that I was not getting ahead at work. In fact, I was not even catching up from all my previous missed time and lost productivity due to this disease, and I was instead continuing to fall further and further behind.

You would think that working in a nonprofit social service industry would mean that the powers that be would have some basic concern and compassion for their staff. I mean, it's not like they're some soulless corporation who just sees an employee as a number, right? Yeah, not so much. The truth is, I was already jaded enough about the nonprofit industry to know that this is not the case (my experience is that nonprofits tend to focus even more on the bottom line than for-profits, and the quality of the services provided tends to suffer as a result). However, jaded as I was, I was still shocked by just how unwilling my employers were to work with me.

Technically, as an autoimmune disease, psoriatic arthritis is covered by the Americans with Disabilities Act, and as such, my employers were required to provide "reasonable accommodations" for me. However, leniency with productivity expectations, even temporarily, is not considered "reasonable" for the employer, and as such, was not required. I was frequently sweetly offered other accommodations that would have been useless for me (what good would an ergonomic chair have done me when the majority of my work was in the field doing home visits?), but nothing that would have actually helped me to be successful in doing my job. I could have taken intermittent FMLA leave, but the majority of that would have been unpaid, and I couldn't afford to do that, so I kept working even when I felt like shit, calling in when I absolutely was not capable of working (or when I was pretty sure my clients would thank me for not being in their homes coughing up a lung over their newborns).

I still think that, had they budged even slightly, offering a reduced caseload for six months or even allowing me to "start over" with productivity to build back up to a full caseload expectation over a three-month period, it would have gotten me back on track. It also probably would have reduced my stress level and increased my resistance to illness a little bit. Instead, I was put on a performance plan that consisted of, "Since you did not meet the expectation of 45 home visits last month, you can make it up by doing 70 home visits this month and next month." When I was practically killing myself to get above 30 home visits in a month, you might rightly imagine that this plan did not go well for me. It was also further complicated by the fact that I was doing home visits with a client population that is pretty well-known for being unreliable with keeping appointments. There was no credit for attempts or cancellations. Even if I called and texted my clients to remind them of our appointment, and pounded on their door for thirty minutes, it did not matter. Only completed visits counted. Because, you see, the state wouldn't pay my agency for no-shows and cancellations.

(I want to note here that, in speaking with a family friend about this situation after the fact, a friend who happens to be a corporate attorney from one of those aforementioned soulless corporations, she told me that she was pretty sure the company she worked for would have offered the accommodations I was requesting, just out of a sense of basic human decency.)

Essentially, what happened to me over this period of time was that a job that I once adored became an albatross around my neck. I was terrified of losing it, because a single income in social services is automatically going to be paycheck to paycheck. But other than my interactions with many of my clients, I was starting to hate it. There were no other jobs within my agency for which I was qualified that offered a similar pay scale, and any other equivalent jobs in the field would lead me to the same basic problems I was having in this job. I felt like I was trapped in a self-perpetuating dead end loop.

On September 13, 2012, I was called in for a meeting with my supervisor, the program director, and the HR specialist. In this meeting, despite the fact that my performance plan had never progressed to a verbal warning or a write-up, and despite the fact that I was never offered any realistically helpful accommodations, I was told that they had "lost faith in my ability to do my job," and they would give me the option of either resigning or being terminated, effective immediately. Their justification for firing me never got more specific than "we've lost faith in your ability."

And just like that, I had no job, no income, no health insurance, a disability that could hinder my future employability, along with a mortgage and a car payment.

It may have looked like rock bottom, but this was actually a huge turning point for me.

In fact, it was the point from which, my sister's actions and their effects on my family notwithstanding, things started to look back up for me.

Of course, I was horribly upset at first, but the reality is that my employers did me a huge favor. Yes, I had loved that job in the beginning, but I had also maximized my potential for growth, and was hanging onto it out of desperation when it was no longer working for me.

I called my mom immediately upon leaving my former office, and she recommended that I call the family friend that I mentioned before.

Right now, I have to give this person a huge shout-out. I don't want to mention her name out of respect for her privacy, but I don't know if I could have gotten through the next few months without her guidance, concern, and generosity. She thought for me when I was too overwhelmed to think for myself about what my next steps should be, and her suggestions and advice were spot on.

The first thing she did was to put me in touch with a labor attorney who could give me some idea about whether I had grounds to sue my former employer for disability discrimination. The bottom line of that discussion was that, I did have grounds to sue under ADA, but it probably wouldn't matter that I was in the right, because they would fight me and fight me hard, and they would be able to out-money me and drag me through the mud to beat me. If I went through the EEOC to avoid paying for a lawyer (which would have been necessary in my financial position), my case could end up dragging out for years.

I still toyed with the idea on and off for a few weeks, but I ultimately decided that my energy would be better spent moving on than seeking vengeance. Because that's really what a discrimination lawsuit would have been for me.

The second thing that my friend did for me that day was to ask one simple question that singlehandedly changed my perspective and the course I chose to take in my life: "Have you considered going back to school?"

Of course, I had considered it in years past, but a few years before had kind of come to the decision that going back to school wouldn't be worth my time.

But as soon as my friend asked the question, I knew. That was my next step.

This friend was generous enough to offer me a loan to help me pay off my previous student loans and get me through the next few months. I am in awe of such generosity, and though I place higher priority on paying off that loan than I do on the federal student loans I have now taken out, I also intend to pay that generosity forward in any way that I can. (Spoiler alert: "Any way that I can" will probably not be financial in nature. I am still in the human services field. But you know what I mean.)

Over the next few weeks, I researched different master's degree programs and tried to decide which one would be the best fit for me. By the time I decided on a program - clinical mental health counseling - I had only three weeks before the November 1st deadline to apply for spring admission.

In that time, I managed to apply, write my admissions essay, make a last minute reservation to take the admissions exam (with my results just slipping in under the deadline), and secure three letters of recommendation. There are moments when it pays to be a chronic procrastinator, because when the pressure's on, we can get shit done. This was definitely one of those moments.

After all that frantic activity to get everything submitted, I had to wait another agonizing two weeks before I was contacted to schedule an admissions interview, and another three weeks before the interview actually happened. It was a group interview, and I wasn't sure what to expect, which added to my anxiety. However, once the interview started, led by two faculty members with about five other potential students, my anxiety melted away. It was like a small-group classroom discussion, and I was totally in my element. In addition to asking us questions, the professors explained the program and its expectations of the students, and I became even more excited with the knowledge that this program was a perfect fit for me.

I received my acceptance email only an hour after the interview ended.

This coming Monday is my last summer class, at which point I will have completed eighteen credit hours. And I am still convinced that I am now exactly where I need to be. I have a vision and a plan for my future career endeavors, and those will take me in a direction that I never considered before.

During the months that I was separated from my beloved niece, and intensely feeling, in turns and sometimes simultaneously, bereaved and enraged, I poured my focus as much as I could into my schoolwork, and ended the spring semester with a 3.9 grade average, despite my high levels of personal distress.

After my counseling techniques midterm, in which I had to complete a video of a practice counseling session with one of my classmates, I met with my professor who told me how impressed she was with my video, and that she was excited to think about the contributions I would go on to make in the field.

And it was then that I realized that, if I could pull that off against the odds that I had been facing, I can do anything.

There's not a goddamn thing that will stop me now.

Wednesday, June 12, 2013

The Simple (But Still Long) Version

I do actually have an excuse for not updating this time. And even though the summer session has started in my master's program, and I have been busy with homework, that's not really the reason.

I have attempted to write the next part of my story. And that next part involves a lot of anger on my part. Rage, even. Some of my anger was irrational and based on the vulnerable emotional state I was in at that point. However, it involved someone who, a few months later, did something that devastated nearly everyone I care about. I might even describe it as the worst thing that has ever happened in my life. My family is only just starting to pick up the pieces from this event and move forward. And I think my rage at the person responsible (or persons, really, because her husband also played an instrumental role) is fully justified.

However, when I tried to write about it, it quickly devolved into enraged vitriol, and was not fit to be published.

Not so much because I'm worried about offending anyone's sensibilities (as I would guess that anyone who was easily offended would likely not make it past the title of my blog).

I was more concerned that it might be damaging to people I love who are also involved in this situation, if I were to put it all out there that way. That is the last thing I want to do. As much as I would love to lash out and fully vent my rage, I can't do that to my loved ones. Especially the two of them who are children.

(Note to my facebook friends who think I overshare as it is: You should see the thoughts that haven't made it into status updates. I edit far more than you probably think I do.)

Still, if you've gotten this far into my story, I feel like I owe it to you to give some information about what happened next.

So here are the bare bones.

A couple weeks after my 33rd birthday, my sister made an announcement. She was getting married! Oh, yeah, and just an afterthought, she was pregnant!

This was not the first such announcement from her. (Well, the wedding was a new addition.) The first time she did this was when she was a senior in high school. We got over the shock that time, and the result was my niece, who is and always will be the light of my life.

This time the announcement came when my niece had been living with my parents (without any change in legal custody, against my advice) for close to two years, because my sister had been, to put it bluntly, neglectful, and had never gotten her act together enough to rectify the situation.

Needless to say, given how much I wanted a baby and how crappy of a parent I thought my sister was at that point, "overjoyed" was not exactly the reaction I had.

Still, I tried to put on a happy face. I was deeply concerned about how this would impact my niece, but I tried to be supportive. In retrospect (sorry, but I'm going to be cryptic about this and not explain my reasoning fully), I do not think this was the reaction my sister was expecting from me. I think she was banking on the idea that I would react angrily. I think she wanted to alienate me.

A couple months later, she found out that she was having another girl, and her middle name was going to be Lucille. (She had announced a first name before finding out the sex.)

Remember how I talked about wanting to name a little girl Lucy? Yeah, my sister and her husband knew about that.

I have reasons for believing this was a deliberate effort to provoke me. I can't prove it, but that doesn't stop me from believing it. Because, you see, I was a social worker, and I had been pretty vocal about my opinions on my sister's parenting (or lack thereof) of the child she already had. Pushing me away would be beneficial to my sister's agenda. Even better if she could make it look like she was being reasonable, and I was being irrational.

Just her luck, then, that I was in an extremely vulnerable emotional state, with a dose of 'roid rage thrown in, because it worked.

I can't say I'm proud of how I reacted, but I'm also not going to beat myself up over it. I'm not a saint, and I had been pushed to my emotional limit, and I was on medication that had a significant effect on my mood and behavior. And that's all I'm really going to say about it.

She ended up changing the middle name, for reasons that had nothing to do with me, but the damage had been done by that time. That was pretty much the end of my relationship with my sister. We made small steps to repair things after my second niece was born last October, but that was before the weekend in December that she and her husband (a guy who is a complete nutjob, and he is the sole reason that I block all calls and texts from unknown numbers on my cell phone) took my older niece for an overnight visit, and then the next day sent a text to my parents saying that they were not in control anymore because she was taking HER children and moving out of the area, and they would not be in contact until they thought my family could respect them. And then for six months she did not allow anyone in my family to have any contact with my older niece (who not only lived with my parents for the two years leading up to this, but also lived with them from birth until she was two years old, and had previously been in contact with her uncle and me almost daily). A long legal case followed, but I will save my rage towards the family court system for another time.

I think it's safe to say at this point that any chance of repairing any relationship between the two of us is shot.

Like I said, things are getting a little better now, and my family has had two visits with my older niece in the past month, and this has lessened my rage a little bit, but a lot of irreparable damage has been done.

Anyway.

That is, believe it or not, the short version. And I'm going to end it here. I think it's possible that my next post will be the conclusion.

Until next time.