I Lack Sticktoitiveness

I know I declared an end to lazy no-posting, then immediately disappeared.  First Mike got sick.  Then I got sick.  Then we went to visit the inlaws for Mike’s grandmother’s 92nd birthday party (I’m still sick).  Then we went to the local livestock show where my son made a fool of me (he’s too little to make a fool of himself) over the pony ride.  Then we came back.  I finally got better.  Then I promptly got sick again.

So, yes, life’s been complicated.  Either I’ve been without internet access while visiting, or I’ve been sick with headaches where the very last thing I want to do is stare at a screen of any kind.

It’s at this juncture that I discovered eBook readers of any sort just can’t beat good old fashioned paper books.  Ow.

Oh, and it’s spring here.  Trees have a fresh, young, green look.  GeekBaby wants to spend every waking moment outside, and I can’t say I blame him.  It’s really nice out, temperatures between 50F and 75F, nice mix of sunny and cloudy, no rain.  It’s times like this I really do like Texas after all.

Then I get another horrible reaction to the possibly infinite quantity of oak pollen, feel like I’m going to die, and loathe this state and all its miserable allergens.

For all that, I’m really enjoying working in my garden backyard that scraggly thistly suburban wilderness behind my house.  But it does pose a certain number of dilemmas, which I will be writing about over upcoming weeks.

For Children Who Have Died Without Baptism

As November is the month of prayer for the dead, it is only natural that my thoughts dwell on my own dead. I still recall with an awful, visceral clarity that afternoon in my obstetrician’s office. I don’t remember the room, or the ultrasound technician, or even my obstetrician’s sorrowful face as he told me my baby was dead.

But I remember having propped myself up on my elbows and craning my head to catch a glimpse of the ultrasound screen. We’d heard the baby’s heartbeat at the last visit and I was simultaneously excited for another peek and anxious to be reassured my baby was alright.

And the feel of the words in my throat as I gasped “Oh my God” a moment before tears overwhelmed me. They were almost too large to speak, the most honest prayer I’ve ever prayed. Perhaps they are the only honest prayer possible.

I remember I didn’t know the phone number for my husband’s school. I could barely remember which school he worked at. The daughter of one of the nurses actually attended that school, she knew the number and called for me. It took forever for him to get there and I had been shunted into an empty office because they did need the exam room for other women. It was the most alone I’ve ever felt in my entire life. And I always feel alone.

Reflecting on this time in a OBGYN’s office, I suddenly remember another. I remember waiting in an exam room with my mother when I was sixteen. I was wearing one of those awful pink paper gowns and I was terrified because I’d never visited an OBGYN before. And the doctor walked in, and without saying a word to me, asked my mother to leave the room. And I said “NO.” I was only there because she’d made me come, because I was missing school because of painful cramps and heavy menstrual periods. I only agreed to go if she’d stay with me, I did not want to be alone in a room, wearing only a paper gown, with a complete stranger, a strange man.

The doctor listened to my complaint, and told me he could put me on birth control. And I said “no way.” I don’t even know why now, although I’m extraordinarily thankful that I did. I remember feeling terribly insulted that he did not take my pain and my problem seriously. He was only offering palliative care, and I knew it.

Looking back, I wonder if he thought I was just fishing for birth control. I don’t know. I’m afraid I don’t care. I wanted to know why I had to experience crushing pain twice a month. Why my periods were so heavy that for the first two or three days I was too embarrassed to go to school. And I got an answer worse than “I don’t know.” I got an answer of “it’s not important.” I left his office with a dislike of OBGYNs that my obstetrician later had to work long and hard to overcome.

And it bothers me. After my second miscarriage, my obstetrician thought I might have a progesterone insufficiency, and suggested I take a hormonal supplement during the first trimester. After a perusal of the literature, I did. That was the only pregnancy I’ve carried to term. But I can’t help wondering, what might have happened had my problem had been taken seriously when I was sixteen. What if I could have been treated? It wouldn’t have just saved me from years of pain, it might have saved my children’s lives.

And yet it’s useless to dwell on these things. The Church teaches that the souls of children who die without baptism are entrusted to the infinite love and mercy of God. And this is a great comfort, that I am not finally divided from them. But despite this, I’m never quite sure whether I ought to be praying for them, or asking them to pray for me.

Sleep

The trial of a new medication has resulted in me getting the first good sleep in… years and years. Longer than I can remember. Since way before I had a baby to disrupt my sleep. So that’s what I’m busy doing. Sleeping.

Worst Fears

My worst fear is that I will go blind.

I do not even believe this is the worst bodily harm that could befall me, suddenly losing my hearing would be much more isolating. But I don’t fear losing my hearing the way I fear losing my sight. It is a fear that I’ve lived with all my adult life.

Everything I do is visual. My profession involves working with my hands at a lab bench, or looking into microscopes, or editing scientific illustrations for publication. My spare time is filled with embroidery, art projects, video games, board games, sewing, reading, writing. My vacations are travel, to see the world. Everything I do is visual. Losing my sight would demolish almost every single thing in my life.

I am myopic, so myopic that laser surgery could at best restore 2/3 of my vision. I have high astigmatism. I have thin retinas and every year at my opthamologist appointment I am lectured on the symptoms of retinal detachments and tears. I have a small cataract in one eye.

I’m twenty nine.

Really, my age is what makes it so horrifying for me. All these problems with my eyes and I’m not thirty.

I haven’t been unaware. I’ve taken good care of my sight. I’ve seen a proper opthamologist every year since I graduated with my bachelors degree. I hate people fiddling with my eyes, I can’t wear contacts because I can’t stand to havae them fitted, but I go to the doctor every year like clockwork. I struggled with light sensitivity and glare until after years of searching I finally found the perfect pair of sunglasses. I get new lenses every two years like clockwork, and wear each pair of frames for 4-5 years just to help bear the cost. Even with special vision insurance, a new pair of lenses costs over $400.

Last week I noticed a persistent bright spot in my vision, right at the focal point of my left eye. I was as though I looked at a bright light, then looked away. I wasn’t sure what to do about it, it took me several days to notice that it was persistent. Then I realized that if I closed my right eye, it was a blind spot. So I went to the doctor. There were tests.

I have a small hemorrhage beneath the macula of my left eye, from abnormal blood vessel growth, that is pushing the macula up. I have macular degeneration in my left eye and I’m not thirty.

Well, they can treat it. The current hot treatment is to inject an anti-angiogenic drug into the vitreous humor of the eye. So not only do I have the eye problems of someone twice my age, the best current solution is to let someone stick a needle into my eye.

I’m torn between a House-esque fascination with the rare and/or interesting and an increasing sensation of feeling sick to my stomach.

My fascination is, at least, authentic. It’s not bravado. I am interested in the treatment, and the theory behind it. And I can hold out hope for future research and improvement in treatment.

Then the health care reform bill passed the House, and I’ve been feeling sick ever since.

I’m not yet thirty. I’m afflicted with a disorder normally belonging to people twice my age. I can only, rationally, expect that the health of my eyes will not improve as I age. If I am lucky, it will stay the same for years before degenerating further. If I am unlucky, I will lose my vision.

And now, with the abomination of socialized care before me, what do I have to look forward to? Only to be left to go blind when I am no longer of any use to society. If there are new treatments, would I be permitted to benefit from them? As it stands right now, with relatively excellent health insurance and with separate vision insurance, I don’t know if my treatment will be covered. I would far rather pay for my treatment and take what comes, as I am faced with doing now! I have always stood or stumbled on my own feet, but I have never felt so powerless about my future as I do today.

Still Alive

I am, after all, still alive.  Barely.  I have a cold that may have leveled several medium sized cities in a previous life.  But moving is done.  Baptism is Saturday.  Huge meal, none of which will taste right because I’m sick is today, including three pies.

This move and attending insanity may even rival BC’s.

Right now though, I’m going to go curl up on the couch and sneeze.  More posts when I don’t feel like my sinuses are attempting a hostile takeover.