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.