May Twelfth

kaweah river valley

One year ago today, holding hands at the far end of a covered deck over the roaring Kaweah River, my husband and I were married.

This has been my freedom. This has been my life.

He and I became fast friends when I was sixteen and he, eighteen. A year and change later, we admitted what was inescapable: we were stuck with each other. Love will do that to you.

He grew up south of Pittsburgh, in a family home in Castle Shannon, playing in the woods with his two younger brothers. I was raised between Tulare and Visalia, my mother's youngest child -- my siblings were old enough to have begun having children before I was so much as conceived -- bouncing between rental homes until a settlement allowed my mother to buy a run-down home as I was entering high school.

We met online well before it became acceptable to meet online. The internet allowed me a social outlet as a young teen with yet-to-be-understood disabilities, allowed me to grow an identity under the roof of a controlling single parent. And, to the contrary of the current conventional wisdom, interacting with the invisible people in my computer pushed me to develop social skills, which allowed me to fall into an awesome group of friends as I hit adolescence.

It came to a point where we talked every spare moment of every day. And it hasn't changed since.

To this day I'm not sure what drew him to me. Looking back, I see a confused child living with severe depression and toxic levels of self-loathing. But when I look forward and see a young woman fighting to break out from under the influence of fear and abuse, I see this quiet, steady young man standing next to her, coaxing her to come out into the light, step by small step. And I see that same young man realizing a greater confidence with the knowledge of his partner's trust and love.

The both of us have changed so, so much in this time. But as we have grown, we have grown together. We are not compatible in a simple sense of shared interests; we are compatible in our mutual adaptivity: teaching, learning, understanding, growing, and deepening our sense of self only helps our love, trust, affection, and understanding of one another do the same.

This has been my freedom -- this has been my life.

We have come so far together, and I hope we will go so much farther.

I love you, Matthew. I hope this year is only our first of many.

Lazy Sunday

Bookends.

***

On the way to a Penguins game one day earlier this year, we realized we didn't have any dollar bills -- which we'd need to ride the T up to the arena. I ended up in a Petsmart looking for something cheap to break a larger bill. I walked out with a handful of dollar bills and a rattling furry mouse toy.

The toy has since lost its tail but -- miraculously -- the eyes, nose and ears remain. (I've lived with cats my entire life; I know those little plastic and felt additions usually last all of a week.) What surprised me further, though, was that Mitsy is thoroughly attached to this toy. She will carry it around the house and sing and coo at it -- or toss it about and yell. And if you shake it, she'll come running. (She never actually does anything once she's there. She just sits prettily and stares up at you, as if supervising.) I suppose it's as close as anything will ever come to a teddy bear for a cat.

We call him Ratticus.



Of course, what surprised me the other day, when I came home with a new litter box (big enough for our very big Buddy cat) and an impulse-purchase cat toy -- a catnip bee that squeaks when it senses motion or impact -- is that Buddy latched onto it almost instantly. Understand, Buddy doesn't play with cat toys. He plays with pen caps and pieces of plastic and his eternal favorite, twist ties, but he doesn't play with cat toys.

But he plays with Tweety Bee. Maybe this will be his Ratticus.

Snapshots: Saturday

(Part of) a day in the life...

I write these bits and pieces because I want to fill out, flesh out, what it means to be -- well, any of the parts that make up me, anyway. In this case, there is relevance to my physical condition; what it means to be fibromyalgic, disabled, living with an invisible illness, managing all of that in a balanced way.

Please note I haven't had time to review and edit this. I am going to bed.

***

Yesterday I was scheduled to work 11-5pm. At least it was long enough a shift to allow a break -- usually I wander around the mall (at the end of which is the camera shop that employs me) and window-shop just to get my mind off the sales floor for a bit. I look at the kitsch in Hallmark and imagine how I'm going to decorate my someday dream-home (which will be small and comfortable and easy to care for). I browse through the clearance racks at Dots -- seriously, nice work pants for $5! -- or talk to the people in the jewelry shops and food places who know us fairly well. I will admit to having hobbled down to the Bon-Ton one time and lay on the sample Sertas.

I was working with my manager that afternoon. I get along fairly well with her, although she has her faults, just as any other human person. She had called me in a panic that morning; our alarm codes were all changed recently, and she needed mine, rightnow, and after I read it to her she belted, "I'll call you back later" and hung up. Apparently the alarm went off for a half hour, and the security guards and police were there, and the alarm company refused to turn the alarm off until she told them her alarm code -- which she didn't have -- even as she offered to prove her identity.

She was, understandably, flustered.

But the day went fairly well otherwise, very steady, and the customers were good. (Retail folks know: there are Good Customers, who are open and amicable but don't pry, who are patient and cooperative -- and there are Bad Customers, who put you in a sour mood, because they don't see themselves as working with you, but against you, no matter which position you see yourself occupying.)

I took one half of a painkiller before leaving for work, and another half two hours later, maybe half after noon. I took my midday medications around two-thirty. And maybe an hour later, I went on break.

When I returned, I had to jump right into things; my manager had three people to be helped and only one of her. And the amount of customers only grew. It was a blur for the following hour; I was juggling at least two customers at any one time. Maybe ten minutes before five, as I was talking to a twenty-something couple who had just walked in to look at digital SLRs, the older couple behind them insisted that they were "just" there to pick up -- what, photos, a warehouse order? Those are quick to take care of -- no -- a camera. And I've learned as much in my time here: there is no such thing as a quick camera sale. We have a bundle of free crap, and some other valuable extras, that we have to explain to the customer. We may be a nationwide corporation, but we operate like a mom-n-pop shop; we explain the basics of working the camera for folks who don't already have a handle on it, for instance. You don't get that at Wal-Mart.

Anyway -- they were obviously not happy to be waiting in line, so I left this couple handling two entry level SLRs at the front of the store to run back and grab everything they were picking up -- which was not simply a camera. It was a printer, and a package of memory cards, and a bag, and a host of other accessories. And I started to wrap up the sale, explaining the Bundle of Free Crap to them, when one of my coworkers walked in. I called him over and handed the older couple off to him, asking him to explain everything to them and ring the sale up, saying -- out loud -- "I do have two SLRs out over here!"

I was flustered too.

The young couple was, in fact, a young family. It was their first time out with their ten-day-old son. He must have gone through four or five cycles of sleep and wake in his time there. They handled it exceptionally, for it being their first time; they would trade off holding him, or feeding him, or rocking him, while the other partner was talking to me. They were very gracious, and the sort of customer who is easy to talk to. It was obvious the husband was more invested in the decision than the wife (who, being a new mother, was also exhausted; he didn't seem to understand why she kept going to sit down at the print bar) although they were both interested.

They ended up buying the Nikon D40, which is being cleared out -- photography, just like fashion, has a spring line that pushes out the last season's worth of product -- and the zoom lens. I went through everything they would need (bag, memory card, filters...) with them, explaining it to them the whole way. At one point, my manager, who was getting her things together to leave -- it being well after five at this point -- teases me about my husband surely wondering where the hell I was. I had been avoiding saying anything, even though it had been on my mind the whole time, because you could tell these two were the sorts of people who would feel bad for it -- and yes, they did.

I explained the damage protection and the rewards club; I explained the Bundle of Free Crap item by item; I pulled together the financing paperwork and called it in; I bragged about our brand new lab (which comes bundled with higher expectations for certain photofinishing products)... I don't know how many customers had come and gone in that time, but it was a lot, and they were, eventually, the only ones left. My manager had gone. My friend/coworker/replacement was cleaning up the mess inevitably left when we get slammed like that, and don't have the time to put everything neatly in its proper spot.

They left, happy, and thanking me profusely, around six-thirty. And once they were out of sight, my entire body fell slack, and I let out a long sigh. And I noticed --

It had been at least six hours since I had taken a the medicine I normally take every two.

-- I felt the pain suddenly. I hadn't even noticed, not that entire time.

And here's the thing. There are a lot of times when I don't notice the pain. That was my state for basically the entirety of my childhood. I had no reason to believe otherwise, so I learned to categorize how I felt as normal, because there was no outward indication that it wasn't.

But when I finally stop doing, and let myself just be, the pain makes itself apparent, bit by bit.

That's the problem with my early years. I never let myself stop. I shouldn't have to stop, was my unconscious thought process, because there's nothing abnormal going on to make me have to stop. And so I would force myself forward, no matter what. Even when I was sick. Even when I felt miserable.

And here's another thing. I missed some ungodly amount of school days every year, from pre-K to graduation. But that doesn't mean that I wasn't pushing myself to continue, attending school when I was sick and sapped, when I should have been home by any reasonable measure. It's just that I was in such a condition as to be missing that much school even while I was putting forth such greater effort than most of my peers, even the most driven of them.

Enough of those other things.

I made my way to the back, where I kept my belongings, and called my husband to apologize. And after a quick chat with friend/coworker, I left for home.

OK: here's one last thing.

Even after resting my tired body for the remainder of the day, and heading to bed early, and rolling out of bed a bit late -- even after my husband helped me wash myself in the shower this morning -- even after the painkillers --

I felt awful today. The first words I heard as I walked into work today were "You look tired."

And I put on makeup today. For the first time in weeks. Even with three types of concealer over the dark circles under my eyes, I managed to look significantly worse than usual, in terms of physical condition.

I was slow and sluggish. I slurred when I spoke (quietly). I shuffled instead of walking. I sat down any opportunity I was given.

Understand this: I am a driven person. When I am not weighed down by the pain and exhaustion, I am up and moving, doing, always doing something. I throw myself into whatever I am doing. I don't slack. I don't dawdle.

I suppose, though, in the end, I am that way because of this weight I carry. If I don't put everything I am into whatever I am doing, chances are it won't end up done.

The point of all this is that my pain is not a simple addition and subtraction problem. When I was helping that couple, I felt like I could keep going just fine. But I can't trust that feeling. I kept going, in this case, out of necessity. But all that time on my feet, upright, good posture, being social, keeping my shit together -- all of it without my pain medication -- I couldn't just make up for that by taking my medication (which I did) and resting for awhile. That shit builds up, even the smallest of it, and for every inch you add, there's a mile more I have to go to make up for it.

If that makes sense.

I'll leave you with something I have noticed over the years: if I'm not smiling, I'm not well. Really not well.

Ever since I went off the birth control and started the Lupron (can't really separate the two) I have been having these awful spasms in my lower back. It's not tremors; it's a single spasm, a strong jerk of the spine from somewhere in the upper pelvis area.

And it's getting fucking annoying.

I used to have spasms all the time; back in middle school, I was having them daily. Back then, though, it was at the base of the skull. A couple years after I started on the trazodone (Desyrel, an antidepressant, though I used it as a sleep aid) (twelve years of age), my doctor put me on cyclobenzaprine (Flexeril) to reduce muscle tension, and the spasms mostly disappeared.

It's both startling and outright painful. In the former case, it feels like a sharp bony hand reaching in through your skin and gripping your brain, like someone sticking a sharp needle filled with poison right in through the base of your skull. The whole body goes stiff and it takes a moment for me to crack my neck back into normalcy and free my head of the demonic interference. In the recent case, it feels much the same, except that it actually physically moves my body around, and jolts my very, very tense shoulders -- the same shoulders I go to great lengths not to strain, because pain in the shoulders inevitably travels upward, and if there isn't sufficient intervention (in whatever way -- painkillers, heating pads, lying down to take the weight of gravity off my head and neck, etc.) ends in a disabling migraine.*

And I've had to explain this as best I could to my husband, who gets a kick out of sneaking up on me, that surprising me is ok, but when you marry a physical sensation to that startling, what I get is, for lack of a better word, an intense shock, and it isn't painful in the immediate sense of the word (like getting a cut or a bruise) but it just does this thing to my nervous system, and it's just as bad as outright "pain." On the level, perhaps, of a sucker punch to the gut, or cracking your head off a wall or floor (when it's not serious enough to concuss or make unconscious).

Maybe the problem is just that we don't have a concept for that kind of "pain," as a society, because most people have never really experienced it.

Whatever it is, I'm tired of it. It happens in bed, it happens at work, it happens when I'm doing the dishes or sitting here at the computer. Maybe it's a reaction to the Lupron, maybe it's an interaction with any of my numerous other medications. I'll bring it up next visit to my wonderful gynecologist, but for now, I'm just sick of it.

*I use the word disabling quite literally here. When shoulder/neck pain and/or a headache become a full-fledged migraine, for me, I'm down for the count. I have to have a soft place to rest my head (and body), free of light or sound, so I can curl up and just wish for death instead of actually acting it out. I can't scream, can't cry, can't groan, because the movement inflames the pain. You can tell when I'm headed that way, because I speak very softly, attempting to control my speech such that my mouth moves as little as possible. My shoulders, neck and head stay stiff, because any movement causes pain, and pain building up such that it becomes unbearable is the whole problem. There's a point where there's no turning back, and I have to just suffer it out, taking the painkillers not because they're going to make me feel any fucking better, but because if I don't, it's never going to go away. I can be stuck in this situation for a day -- it never goes away in mere hours -- or for weeks on end, depending on how bad it is, how much I did, whether I can take the adequate time and have an adequate space in which and adequate resources with which to recover.

There was one time, during my first attempt at college, that I was in one of the art rooms for my 2-D Design class (with my favorite prof in the world), working quietly on whichever project it was at the time, surrounded by fellow students working quietly on theirs. And the simple scratching of pencil on bristol, rustling of paper, adjusting of seats, the hum of the lights overhead -- I was ready to throw up, and I knew I had hit that turning point, and I knew that I had to get my ass in my car and drive home right then, because five minutes from now I might not be able to drive safely, or at all. So I gathered my shit, quietly, stiffly and robotically -- moving my body, and especially my shoulders, as little as possible -- and left. Fortunately the prof had gone out on errand, because I would not have had the time or strength to stop and stand and tell him why I was leaving, and have him ask was I ok, and would I be ok and is there anything he can do and make sure you get this done or whatever -- I doubt I would have been able to conduct myself safely in a moving vehicle if I had waited through that, and forced myself to speak, against every inclination of my aching body. I left, without saying a word even to my class partner, and walked as quickly as I could while exerting as little force as possible (do you folks know how fucking hard that is? when you're in that state?) to my car, and threw my shit on the passenger seat and lowered myself down into my seat, and squinted my tired eyes the whole way home, and every step I took up to the second-floor apartment jarred up through my body from heel to skull, and I closed and locked the door to my room and fell down in bed, and I don't remember anything after that. To tell the truth, I don't remember anything after walking out the art room door, but I can tell you what I did because I know exactly how it goes, I've done it so many times.

And you know, I find it interesting that I cannot come up with an adjective that describes the intense sharp pain I felt in my entire body. I know aching, tired, sore, etc. but none of those describe that awful feeling, the tense and stabbing feeling over every inch of skin and miles deep below it. Granted, I've never been good at vocabulary.

Snapshots

Husband and I are going over the finances. It's a bit of a tight time (I say this, mind, knowing that we are trying our damnedest to land round two Penguins playoff tix, and have already bought Pirates-Yankees tickets, and things like how I have been on the lookout for a cute new headband/scarf lately -- so we are not poor, just cutting it a little close).

He and I did argue a bit for a few days about how to handle the finances. We already use Quicken -- something we both refer to as "the best investment we've made" (bought mere days after I moved in) -- but we use separate computers. One with XP, one with Vista. And apparently, filesharing is damn near impossible 'tween those two. And I hate to "nag" at him to sit down with me and update the finances together. And so we were hitting a bit of a wall, there.

Anyway -- we are deciding to sit down together nightly (for now) -- so that I don't have to be the one "pushing" him into it, and we bypass the filesharing problems. But we were discussing, for lack of a better term, allowances.

And husband objected.

I don't know what else to call them. As I told him, it's a constant in every financial arrangement between partners I've seen -- some amount of money each partner can have to spend on items without having to run to the other partner for approval, whether it's "$20/month" or "everything I earn after the bills are paid."

But it makes him uncomfortable. Certainly in a gendered sense (the Man, Bringing Home The Bacon, giving the Wifey her little "allowance") but also because we are both sensitive to any implication of control or abuse on his part -- I grew up in a family absolutely soaked in domestic abuse and my own mother has, projecting, called him "controlling" several times.* He is constantly monitoring his own behavior for any sign of this being true. I am constantly watching my life as a whole to make sure it does not happen to me -- partly for me -- but partly, as well, because I am desperate not to pass that paradigm onto my future children.

Anyway -- just a bit of a fragment I felt like pointing out.

*See, to her, she started losing control of me, and then he showed up on the scene. I, being a mere child (a girl, no less) with no agency (even in my mid fuckin' twenties) of course cannot be the one to have gained control of my own self -- there was a MAN in my life now, so he must be the one controlling me! This is a result of the way she grew up -- this is the only concept of a man in a relationship with a woman that she has. She simply cannot understand it happening any other way. And that is just damn depressing -- and a reason I am very, very sensitive to even the slightest sign it may happen in my own life.

On resolving open questions

I stopped at the scale, put down my purse and slipped off my shoes. "So you know what to do," the nurse laughed. "I've been to plenty of doctors in my time" was my reply.

When she asked me if I knew how to do a clean catch when sending me for a urine sample, I responded in the affirmative, and repeated as I walked to the bathroom: "I've been to plenty of doctors in my time."

And that I have. I have myriad health problems, and have had since childhood. As far back as I remember, I missed no less than 10-15 days of school per year -- and that before puberty kicked in and I found myself unable to sit upright on the first day of menses. I was always getting "sick." Thing is, I rarely had a sniffly nose, an upset tummy or a fever. Usually, I was just exhausted.

My doctors struggled to come up with an explanation for this bright but languid child. I was diagnosed with fibromyalgia at twelve mostly because my mother began specifically asking about it. (I was diagnosed with a 20/200 left eye at the same time -- no one had ever discovered my impaired eyesight.) I did a lot of doctor-hopping throughout my childhood and teenagehood. I found out that most of the doctors in my area were fairly ignorant as to my condition and had no real help to offer. I didn't get effective treatment until I started traveling four hours to Beverly Hills to see the rheumatologist who shared the office with my mother's, who is world-renowned for his work with fibromyalgia patients, but wasn't accepting patients as young as I at the time.

That office watched me grow up. I traveled with my mother every 2-3 months for her appointments with Dr. Silverman, and then I started traveling down there every 2-3 months for my own appointments with Dr. Silver. The nurses were well familiar with me. They watched me grow from a lanky barely-pubescent child, always silent and hiding in the corner with a book, to a tall, lanky young adult, growing more confident and certainly more talkative.

And they took care of me. They listened to what was going wrong with me, and they understood, and when they told me what they thought, they knew what they were talking about. Dr. Silver was never afraid to explain recent research to me when I would bring it up. We could have a two-way conversation without me feeling condescended to. And largely, he recommended treatments that actually made a difference in my quality of life.

That kind of doctor is rare. I've spent more time in the offices of doctors who had poor communication skills, little knowledge of the condition at hand, and poor bedside manner than I have in the offices of doctors who were understanding and accessible and had relevant advice.

There was the doctor who dismissed my concerns about endometriosis as PMDD, primarily a mood disorder, when the only symptoms I had presented were physical, and so severe as to be disabling for the full week every month. There was the pediatric rheumatologist who would poke and prod at my tense and tender shoulders, repeatedly, every visit, exclaiming how tense they were. There was the county psychologist who marked me down for substance abuse when I listed Vicodin as part of my prescription list, even after I explained my disorder and offered to have her call my doctor for confirmation. There was the Pennsylvania doctor's office who consistently denied me prescription refills or otherwise put obstacles in my path, and whose doctors I had to lecture on what fibromyalgia is because they were still relying on information from decades ago. There was the rheumatologist who yelled at me for a full forty-five minutes about how fibromyalgia is actually depression and the medical community was conspiring to put him out of business, and then felt me up ("just checking your liver" -- which has what relevance, exactly?) before I actually ran out of the examining room, grabbed my dozing husband and broke into tears outside of the office.

And then he charged my insurance just short of $400 for the visit.

And that's just a sampling.

These experiences make me all the more grateful when I finally have a positive encounter with a medical professional.

***

I asked my husband to come with me to my appointment yesterday. I remembered sitting alone in that dark, closet-sized room for twenty minutes waiting for the doctor to examine my sonogram results and tell me whether the lumps I had in my breast were cancer. It was excruciating, and I didn't particularly feel like going through it again.

And when we walked out the door, I sighed to him, it feels so good to have someone actually take care of you.

I have been seeking diagnosis and treatment for my dysmenorrhea for four years. I've been suffering it for about a decade now. And now, only just now, I have someone actually doing the tests required to find out what is causing it.

My gynecologist listened to me while I described my symptoms. She asked questions to clarify. She explained her thoughts to me without condescension.

We're going to rule out infection first, she said, and then if everything comes back negative, we can schedule you for a laparoscopy to check for possible endometriosis.

I can't begin to describe that overwhelming sense of relief that hits you when you hear those words. Someone understands, and they want to make sure you are taken care of. They aren't looking for ways to dismiss you or pass you off to someone else. That pain you've been going through for all this time, and all those other doctors who just shrugged their shoulders and showed you the door -- someone is actually taking you seriously, and believing you when you describe your symptoms, and caring enough to follow through and make sure that it is correctly diagnosed and treated.

Someone is doing their damn job.

We scheduled a laparoscopy for next Friday. It is, thankfully, a fairly minor surgery. But hopefully, by that afternoon, we will have an answer.