I'm sick

 I spent a lot of September talking (writing) about a particular condition I have and how it relates to my inability to have children of my own. Talking about myself isn't something that comes naturally, mostly I think, because I don't want to be thought of as a whiner or someone who seeks sympathy for a lack of any other connection with others. I think I also don't want to come across as someone who thinks my day to day "stuff" is on par with someone facing, say cancer or ALS. So I was determined the next few blog posts would offer some variety. But as I prepared to sit and type, my hands were blotchy red, angrily swollen to twice their size, heat radiating off the skin and itching to the edge of madness. It was a little hard for that to not grab my focus.

See, if you know me, and at this point the only people reading this do, you probably don't know that there are days I can't walk without a cane. That I can go from a mild cold to sinus infection to pneumonia in literally less than a week. That at the end of each sentence I typed three days ago, I rubbed my fingers together in exquisite agony to scratch the endless itching that no amount of allergy medications or hydrocortisone cream can ease. And I'm just thankful that this flare up is only in my hands and not in my feet. This time.

I have an autoimmune disease.

Couldn't help myself...

My immune system, for some unknown reason it has not seen fit to share with me, attacks my own body.

And at this stage in my life, it's more of a nuisance than something to get all up in arms about. Which is good, because there are days I can't lift my arms. That's a little dramatic. It's also a true statement, but one that thankfully doesn't occur all the time. As I get older, I will lose my range of motion and my ability to do certain things for myself as my immune system attacks everything from skin to joints. On a good day, I can't open a sealed jar of say applesauce or pickles on my own. Two days ago, I couldn't make myself a can of soup, open a package of crackers or hold a cup without using two hands. In the end, my hands swelled to almost three times their normal size, skin along my arms, chest and face became fragile and large red blotches came and went - and all that was before the pain set in. All that stuff other stuff is just to let me know that crippling pain is on the way.

Because my immune system attacks itself (with exceptional joie de vivre) I generally have a hell of a time not having a cold, the flu, an allergy attack, pneumonia, bronchitis, asthma attacks, sinus infections, etc. I cannot begin to tally up the number of times I've heard in my life, "You're sick again?!" Yes. I am. Again. It's thrilling. A laugh a minute. The taste of copper as I cough, the vice threatening to push my brain out of my skull from sinus pressure, breathing through my mouth like I eat paint chips for giggles, not being able to catch my breath, my poor stuffy/runny/cracked nose. My monthly and quarterly sinus infections are down to yearly or less. But this year, flu shot be damned, I got sick mid-flare. Lotion tissues & congestion meds, stat!

People I think, tend to focus on the extremes. For attention. To keep interest. So I want to be sure to point out that the stupid pain, the swelling extremities, the sinus infections, they aren't an every day thing. It's frustrating to be sick, in any capacity, but aside from the past four or five days (and yeah, the stomach  bug bout I had a few weeks ago which may have been the trigger or may have been an early warning of this flare) my autoimmune stuff (technical term) seems to be under control. I haven't had a flare this intense in several years.  So I'm tired. A lot. So I drop things. A lot. I'm still here. I woke up. I felt better today and I'll feel even better tomorrow. There are some days when I have more limits than other days, and that's an internal struggle not an indication of my worth as a person.

The swelling in my hands is almost completely gone. The heat remains, as does just a bit of mild pain. Compression gloves, ice packs and targeted medication are wonderful things. Various bones and joints in my body randomly feel as though someone reached into me and is pulling my bones apart from the inside. Weird, but it's the best way I can describe it. It's like a sharp ache from time to time. I'm sniffly and snuffly, but I was able to breathe through my nose most of today and I'm still on my first box of tissues.

So chances are if I simply say 'I'm sick', there's some weird thing that's gone haywire that takes six paragraphs to kind of explain. And also, it's not code for loafing at home, eating candy and binge watching four seasons of a show. It does probably mean I've probably got a few movies cued up to watch/listen to while I nod off periodically or zone out in a zombie-like haze.

Two points if you can guess what one of those movies has been been this week.

Autumn

Growing up along the coast of Florida, you wouldn't expect me to get a whole lot out of the fall. But some of my giddiest childhood memories are firmly planted in this season, after culling anything related to gift-giving occasions. I have very few memories of life before Florida, my toddler years, and of those, only two would have taken place unquestionably once the leaves began to change. The first Halloween I can recall centers mostly on my intense dislike of my costume - a homemade, probably hand-me-down, clown - and of wanting to stay out longer with the rest of the kids and having to climb the seemingly monumental stairs up to our backdoor once we got home. The other confirmed autumnal memory was also from Halloween, but this time we were moving from the frozen tundra mid-west down to Florida the next year. Here again, the memory has become more tenuous over the years, but I remember sitting in a booth at a diner near/at our motel that had decorations on the windows and the waitress was dressed up and very sweet to me. I remember more about the move itself, the night before we left, the drive down and packing up our hotel room than I do about the holiday or season. 

Settled along the Treasure Coast of Florida, I don't remember a whole lot of fall for the next maybe two years, with the exception of the distinctive smell of early 1980's plastic masks for costumes. And the completely useless eye holes. I suspect this bit of memory has been overwritten to store random song lyrics or television theme songs. Or the chemicals in the plastic rotted a bit of grey matter. Potayto, potahto. Lima bean! Maybe carrots? My brain itches...

Anyway, it is the next years, the solidly elementary years, that are at the core of my love affair with rusty orange, golden yellow, and burnt sienna. There were fall festivals. There were spooky cartoon specials. (Chucklewood Critters' Which Witch is Which? Witch's Night Out? The Worst Witch? Mr. Boogedy? Anyone? No? I'll just take my old vhs tapes and go home. Hmph.)  Arts & crafts at school. Girl Scout activities. Frightening books that I could not get enough of. (I knew my library better than I knew my own name.) Handing out candy to the little littles (as I like to call them) before I'd go out violently demanding candy trick-or-treating so I could see their adorableness before they were smoothly taken home before dark. After Halloween, the television specials continued, as did the arts and crafts, holiday books and activities. I remember describing in great detail in my fifth grade language arts journal all the preparations that went into our Thanksgiving feast. Pies! Pies for days! 

And let's not forget decorations. Everywhere. Pumpkins, skeletons, turkeys, scarecrows, cornucopias, witches, ghosts, pilgrims, dead leaf everything. Though its been broken and glued back together in recent years and has a few chips, I still have the ceramic pumpkin my mom painted what must be eons ago. I am downright offended at the mere passing suggestion of getting rid of it. When the local grocery chain offered pilgrim salt and pepper shakers several years ago that went along with their seasonal add campaign, well, you can be sure I bought a set. Possibly two. But most definitely at least one. Couldn't have gotten three. Most probably. 

Costumes and feasts aside, when it gets to be this time of year the memories that really pull me along are more personal and almost solitary. In a good way, I swear. Because even though I lived right on the coast of Florida, and even though trick-or-treating was held in malls due to mosquito problems for a few years (true story), and even though it'd be hot enough you could almost cook your turkey on the sidewalk, I could always feel the air change. I could taste a crispness to the wind and feel the scrape of ghostly leaves against my skin when autumn finally came. Every year, without fail, I could perceive (or maybe more realistically imagine) the change in the season. I just knew there'd be caramel apples in the grocery store, on display in large barrels filled with hay. We'd stock up on the wrapped pieces of caramel, to make our own caramel popcorn balls and scald the living daylights out of our hands with. 

To this day, I still get that ah-ha moment of feeling like fall is coming. The memories come to me regardless of the calendar, but I admit this year was pretty well timed. In years past there's been several weeks difference between actual fall and my excited inkling. My husband used to think it was funny when I'd make my declaration. I explained it once, and over the years, his amusement has changed to taking in the moment with me and agreeing. I had that moment today, with full sensory memories of riding in the station wagon with the windows down on our way to some fall activity or just the grocery store to gather stuff to make treats or a feast. 

So here's to the glory of binge watching every old holiday special you can find on YouTube. Here's to the happy chills brought on from the safety of a good spooky story. Here's to not losing the memories of the best of childhood in the hustle of the modern, adult age. 

Anybody else craving homemade caramel popcorn balls? 

My PCOS Journey Pt 5

To catch up to current time, I've spent the last few years trying a different approach as I watched the unofficial deadline to the last viable chance of fertility inch ever closer.

I still haven't gone to see a reproductive endo. I had someone all picked out, recommended by a primary care doc with an actual understanding and experience with PCOS. We were getting our ducks in a row, again. My husband had gotten a new job a few years back and with it new insurance, although the insurance changed every year, changing co-pays, deductibles, doctors, networks, etc. Just as I was preparing to wade back into the waters and give it the old college try, he had a health scare. It turned out to be a false alarm, but it did propel him to work on a healthier lifestyle so that's a win. And then for good measure, life happened. You know, like it does. My husband lost his job. No warning and never been in trouble. (I feel the need to defend him, as though people are judging that there must be something wrong with him.) We had just financed our first vehicle since the one I worried about paying for when I was laid off all those years ago. (Which we paid off on time, for the record, like seven years ago.) 

My husband has a new job now, one that I'm proud to say, is with the kind of place he's worked hard to get to. And of course we have insurance along with it, I'm grateful to report. I realize there's a whole governmental thing (technical term) in place for that now, but I'll still choose to be grateful for employer provided health insurance. 

As for the different approach I've taken after the variety of upheavals (aka, life) is to read the PCOS studies as they are being published. (Fun fact, most are being done in Italy. I don't know why this is, but I'm just glad someplace is taking this seriously as the rest of the American medical community plays catch up.) Slowly, the treatments found to be beneficial in these clinical trials and studies are being introduced into America despite being readily available in Europe for years already. That's a long way of saying I'm working on it with over the counter supplements, exercise and stress management. I'm learning to de-stress more, live in the moment and meditating. All good things for overall health anyway. I've stopped peeing on ovulation sticks and charting and all the other busy work that goes into following your cycle and waiting for ovulation. I'm spending more quality time with my husband, not time agonizing about what's going to be or what if it isn't to be. I'm focusing on writing and what brings me joy. I've taken to doing crosswords with my mom and coloring from time to time.  In other words, I'm finding the joy in my life each day. I've stopped being so afraid of being alone at the end of my life if I don't conceive or I'm not able to adopt. I hadn't realized that until recently. For the first time in my married life, in my PCOS life, I've stopped spending every spare moment thinking about conceiving. Completely unintentional, but it's a relief nonetheless. Something I wondered if I'd ever be able to do. And I didn't even realize it until I wrote this series. 

Don't get me wrong. I can almost feel the arms of a child of my own wrapped around my neck while their sleepy head rests against my shoulder. My arms almost ache from it. But it doesn't consume me anymore. I hit the mythical threshold of that decline in female fertility. Nothing happened. No baby. No magical wand restoring my cycles. But also no heartache. No feeling of failure. I believe, as in all fairy tales, in the possibility of a happy ending still. But I also now believe the ending can be happy if it goes another way. I feel hope either way. 

The last blood work I got back from using the supplements was as though I were taking prescriptions, which is in line with what the medical studies I read showed. So far, no improvement to my periods, but I feel better. My attitude is better. PCOS affects more than my fertility, so feeling physically better is important. 

Getting philosophical (or loopy from staring at the screen for so long), I could suggest that things keep popping up because it's not been the right time yet, or because maybe like my endo suggested, I shouldn't put my body through all that. I could also suggest that it's all a test for how bad I wanted it, and I never wanted it bad enough to crawl across molten shards of glass carrying a venomous eel so it hasn't happened. And of course, I could also suggest that it's just life and shit happens to everyone and there's no reason to see anything more in it. 

As a side note, since this is my PCOS/TTC journey, I haven't discussed adoption. I'm very open to it, and always thought I'd have a house of biological and adopted children before I knew about PCOS and infertility. But, this series of posts is about my journey to conceive, so I stuck with that aspect.

Thanks for following along with my journey, especially those of you who could go your whole life without reading one thing about ovaries and periods.

My PCOS Journey Pt 4

If you remember when I started this series (You're not binge reading, are you? You've got some crumbs...), we've not achieved baby as of today. So I hope you weren't too excited where we left off last time.

At the cusp of maybe baby time, life, yet again, happens. Or almost ends. This period marks a series of ends and reboots in our lives. By this point in our slowly winding story (three hour tour...) our TTC journey is nearing the decade point, not that it may seem that way when summed up across a few (ha!) posts, but true. I've bought books, I've skimmed endless message boards, I've googled and yahooed til I couldn't see straight.

As randomly as I seemed to begin ovulating, I stopped. I took a break from charting. I stopped peeing on ovulation test sticks. Every pregnancy test stick had the same result I'd ever gotten: no baby for you.

And then one day my dad, who hadn't been feeling all that great but not all that bad, came home from work because he couldn't catch his breath. Something didn't sit well with me, so we called the doctor and they had him come in.

I should mention, I'm already a little extra cautious about my dad because he'd been recently (within the previous year or two) hospitalized because a doctor prescribed something that interfered with a different prescription and it didn't get caught until his primary doctor was reviewing his chart while I drove my dad to the ER. My father had also just recovered from joint replacement from the previous year and is still working on the last bit of physical therapy/strengthening when he isn't feeling like himself.

At the doctor's office, we're there less than five minutes before being told he's got to go to the ER right away. His oxygen levels are low enough that whatever is happening is very serious. I could see the hospital from the doctor's office, but they almost called the ambulance to come take him because of how concerned they were. There are a lot of things in life I can talk very matter of fact about that might give others pause. This is not one of them. To this day, the memories of this, the understanding of what might have been jolt me to my core and scare the daylights out of me.

The doctor called ahead to the ER as we drove the hot second across the street. We skipped triage and were taken straight back to the rooms directly at the nurses' station, where all the supplies and devices are within reach. Ultimately, my father had pulmonary embolisms. Several of them. Blood clots in his lungs, blocking the lung arteries and/or the branches of the arteries. At least one had broken loose and gone through my dad's heart. There is some debate between two cardiologists as to whether or not he then had a heart attack, but as the senior cardiologist (who said he did not) told my dad, if there was a heart attack, your heart has absolutely no damage in anyway and it doesn't matter. He had those clots, as we found out after he was discharged and being tested, because of a genetic clotting mutation that is hereditary. Following his long recovery from the joint surgery, he ended up with what kept being referred to as a nursery in his leg that was producing and then throwing the clots. A daily blood thinner, and he's supposed to be clot free, which has its own unique issues and dangers.

Somewhere in the midst of this, another medical issue of mine had become diagnosed. Another story for another day, but my dad's joint issues are also hereditary. You mean your joints don't swell and contract and hurt like the bone's broken? You don't get random fevers for no reason? You don't spend days and weeks dropping anything and everything in your hands, to the point you nervously skirt by any bit of breakables you come across when you're in a store or at someone's house? It doesn't take you twenty, thirty, forty minutes or more just maneuver yourself out of bed and be able to stand up on your own? That's so weird, because I just figured everybody had wackadoo crap going wrong with them by the time they're 30.

After all this, I returned to my endo with my weight creeping back up. No changes in diet, no changes in exercise, taking my meds. Don't forget, one of the new pills I was taking caused weight gain even though it helped the rest of my symptoms. My blood work was stellar. Frame worthy. I was doing exactly what I was supposed to. I told her about my dad, and how eventually I'd need to be tested for this genetic mutation. I told her about my recent other diagnosis. Her face fell, she looked at me and told me to adopt. She was concerned I might not survive giving birth if I was able to conceive. It was a blow I was not expecting. Obviously, conception as well as pregnancy health, labor and delivery were not her specialty. But as a medical doctor who had the most knowledge so far, I can still feel her words in my chest, in the pit of my stomach years later.

To be continued...

My PCOS Journey Pt 3

Behold, the fond memories of reliving initially being unemployed. As the economic bubble burst, my entire office was laid off. I felt like such a cliché carrying my crap out to my car in a cardboard box, worrying about how we were going to make next month's car payment. Or, you know, rent.

So I put a pin in the medical side of making a baby for the moment. I looked for work, but we were struggling with a whole different can of worms at home. While my odds of finding a job decreased with every news broadcast about the financial meltdown, my mom was having an epic psychiatric breakdown of her own. We're talking San Andreas fault line in my house.

Within the last year or two, my husband and I had committed to inviting my parents to move up from South Florida to live with us. The job my dad had was about to go under as the owner was going to close up shop. So we didn't renew the lease on our apartment and rented a house nearby with my parents. As time progressed, my mom's mental state went off the rails. A psychiatrist at the time argued that she was quite stable and that she didn't need any medication. He told her she needed to color her hair and try something new, as though she was a middle-age woman having a midlife crisis. In the end, I was where I was needed, at home taking care of my mom so my dad could work to keep them covered with insurance and together we could afford to keep a roof over our heads. Something I know too many people over the coming years were not as fortunate to do.

In the years that followed, my husband's insurance improved to the point we could actually use it. Which was important because I was feeling like hell. I had gained more weight, in addition to the weight I had already gained immediately after college. I couldn't sleep, so I stayed up and wrote my first complete manuscript. My periods were still months upon months apart. My primary care doctor's demeanor toward me began to change. She'd tell me embarrassing stories about her overweight sister. She had her office call and schedule me to come in, as though there had been some problem with my recent blood work that couldn't be discussed over the phone or wait until my next appointment. I came in, concerned, paid my co-pay and was told to start pushing away from the table and stop eating so much. She threatened me that diabetes would be in my future if I didn't get myself under control. I was livid. I was hurt. I made up my mind to see an endocrinologist since she refused to send me to one at a previous request. Luckily, our insurance at the time didn't require referrals. Unfortunately, the endo I knew and trusted only accepted patients referred directly by other doctors. Fortunately, she was treating one of the parental units in my life. I mustered up the courage at a visit and asked if she treated PCOS. Oh yes, she told me. I explained the situation and she allowed me into her practice and I set up my first appointment that day.

At the same time, I found a gyno in the area that I was comfortable with. After the change in tone from my primary, I didn't feel comfortable having her do my complete annual well woman exam any longer. It was with this gyno, while I waited for my endo appointment, that I discussed starting metformin, a super common, super inexpensive medication commonly used for diabetes treatment. Off label (prescribed for something other than what it is specifically marketed for), there has been a lot of success in using it to treat PCOS, not necessarily for fertility, but in other aspects and with some improved fertility. She pulled out a medical journal where she had just read an article about it. It was such a relief not just to be taken seriously, but to have a doctor admit she was still learning about it and sharing what she had. She settled on a dose, based on the article, and I was back in the world of transvaginal ultrasounds. My baseline for the gyno showed the 'strands' of cysts I had all across both my ovaries. I also had 2 large cysts that could have damaged my ovaries. After using the medication for several months, all the cysts were gone, even the potentially dangerous ones. I was also down more than 30 pounds, without changing a single other thing in my lifestyle.

By now I had seen the endo, who was pleased with the progress from the metformin (since she would have prescribed it first anyway). She ordered a battery of other blood tests, which was a relief because no one I've come across since has been as familiar as she was with what to look for and how to really understand the results. What I learned from her was invaluable. My primary doctor was less happy. She all but called me a liar when I told her the weight loss was because of this one pill, prescribed off label. She told me that was impossible.

My blood tests from the endo came back and she added an extra medication, again off label and commonly prescribed for diabetes and with the added side effect listed on the bottle that it may increase ovulation/chance of pregnancy. For the record, I was not and am not currently diabetic - and I make that distinction only because of the confusion I've experienced from other medical professionals because of these prescriptions. But what does appear to go along PCOS as they learn more about it is insulin resistance, which can eventually lead to type II diabetes. If you treat the insulin resistance, you seem to treat or at least gain ground on PCOS. It's a chicken or the egg situation, as so far, there isn't proof which ones comes first or causes the other. Anyway, she also added a temporary weight loss medication to help me lose weight but to also help combat the weight gain associated with the other new medication. Temporary because after the first few months you use it, you build up a tolerance and it doesn't ever really help again. All systems go, I lost more than 60 lbs in a matter of months. My ovaries were clean as a whistle, my periods were starting to become more regular, it was almost time to be handed off to a reproductive endo.

In the mean time, my regular gyno prescribed me the golden ticket - clomid. Clomid is the fertility medication I was on the brink of getting years earlier from my first fertility doc, who had all but guaranteed I would respond to this prescription and have a baby in no time. This medication stimulates the body to ovulate and has an increased incidence of multiple births when it works a little too well. I could barely contain my excitement. I took the tiny pills on the specified days of my cycle and began peeing on ovulation test sticks to a near obsessive degree. Because nothing brings out stress-induced OCD quite like peeing on a series of test sticks where the result is based on the depth of color between the test and control lines. Is it dark enough now? Today? Did I miss it? I think I see a difference this time. Maybe if I test again in a few hours... Expected/optimum ovulation window came and went. I had failed my first clomid challenge. My body had not responded. On the next visit, my gyno doubled the dose. Once again, nothing. My gyno increased the dose one more time, but this time warned me that if I didn't respond to this last attempt, further treatment would be at the hands of an infertility specialist. Well color me surprised, that dose didn't work either.

For a while now, since I had started with the gyno and endo in earnest, I had been charting. For the uninitiated, this is when you track a variety of fertility signs (including your menstrual cycle) as well as your basal body temperature (your baseline temperature upon waking before you even get out of bed). The idea is that while you may not be able to see that you've ovulated or conceived, the fluctuation of hormones impacts your temperature (seriously, it really does) that can be tracked on a chart. And on a random month, well after the clomid was out of my system, I ovulated. All on my own. And then a few months later, it happened again.

To be continued...

My PCOS Journey Pt 2

When last we met, I was hip deep in a country song: young, broke & married. I knew we had plenty of time. At 23/24, it's hard to imagine your life at 35, the infamous age of the decline of female fertility. Of course we had plenty of time! How could we not?

I had a new job and with it, shiny new insurance. Insurance with co-pays and low deductibles to meet. Insurance that allowed for certain infertility testing as long as it was coded for specific conditions and not infertility. And to be fair, while the end game in my mind was to conceive, I have a real medical reason and accompanying issues for not having conceived yet. Whether or not I was trying to conceive, I know now that what I considered infertility testing at the time really is important diagnostic testing for a variety of medical concerns.

So after being married a couple of years and with friends who were slightly older and also trying to conceive, I started making appointments. I finally asked my next primary care doc about PCOS. Oh yes, she told me, that made a lot of sense in my case. I was elated. But there really isn't anything you can do for it. I deflated. Well crap. Fertility doc, here I come. So, I met with the fertility doctor recommended by friends of ours who happened to be struggling with infertility as well, although for a different reason. I was officially diagnosed with PCOS. You know all the funny tv and movie ultrasound scenes, where they're checking for this or that or the not-even-showing-yet baby's heartbeat? Unless they're shoving a condom-covered wand into the actress's vagina, don't consider it authentic. Who doesn't love a good transvaginal ultrasound? Me. I don't. Not in the slightest. I think some of the techs think they're practicing their Wii golf game while they're in there.

{A little basic info - feel free to skip down to the next paragraph if you have been ridiculously and thoroughly educated by way of your own infertility journey.}

The "PC" in PCOS stands for Polycystic - or multiple cysts - and the "O" is Ovary (or Ovarian). Here's what naive lil ole me didn't have a clue about (and frankly most women who haven't been thoroughly educated on the intricacies of menstruation and reproduction don't know): Day 1 of a menstrual cycle is the first day of a period. On that day, the hormone shifts to estrogen production in order to prime the uterus/ovaries for the coming month. You shed the old lining (on average 5 days, but it varies). As the cycle continues, and those hormones have your uterus working on a new lining, an ovary (usually just one, sometimes both) is getting an egg ready. Unlike men, women have all the eggs they're ever going to have at birth. Each month one (sometimes more, which is the reason for twins, the non-identical kind) egg gets pushed to the outside of the ovary into a fluid-filled sac, or cyst. When a woman ovulates, this cyst ruptures and releases the egg to cruise on down the fallopian tube connecting each ovary to the uterus. If the egg is fertilized by sperm, ideally it will implant into the waiting & healthy lining of the uterus to become a fetus. Once ovulation occurs, hormone production shifts to focus on progesterone, believed to be necessary to maintain the beginning stages of a pregnancy (until the placenta forms, which takes over producing enough of this hormone for the duration of pregnancy). Without implantation, the body is signaled to shift hormone production again and will bring on a new period. The mythical standard for this whole cycle is approximately 28 days, with ovulation usually assumed to occur around day 14, but even in women without PCOS, this varies.  In PCOS, when it comes time for ovulation, most of us never have the cysts burst. Over time, our ovaries look like they're covered in bunches of grapes or strands of pearls from all the cysts that never ruptured. Sometimes these cysts can grow and burst later, leading to intense pain, internal bleeding and more.*

On the eve of my having the last bit of fertility testing before we started the medications to assist conception, we hit the first, but certainly not the last, snafu of our journey. I was scheduled for an HSG or hysterosalpingogram and had been given a prescription to bring on a period because it needed to be done on a particular day of a menstrual cycle, something I didn't currently have. Well, since it had been forever ago since I'd had my last period, some, uh, build up had occurred. Meaning when it came, it was heavy and it lasted. The doctor's office told me not to worry about it and scheduled the test based on when the period started. The hospital radiology department doing this procedure however, had a kitten, an absolute kitten, when they found out I was still lightly bleeding. They refused to do the test. They didn't understand how I hadn't called and cancelled. These women clearly had never had a cycle out of sync in their lives and couldn't understand my explanation and basically shamed me. It was humiliating. The doctor's office didn't understand the hold up, as though I had some kind of overriding authority I could have used with the hospital staff that could have made the test happen anyway. Huh? Did I miss something here?

Wait, what's an HSG, you nobody says? With your lady parts held open and your feet firmly planted in stirrups, images are taken while dye is flushed through your uterus and into your fallopian tubes to check for blockages and other issues.* I have never once, not ever, read an account of this procedure where, blockage or clean as a whistle, the patient was not in agony. I have only rarely heard of doctors who request this test prescribing any kind of pain killer.

And before I could get everything lined up again to take another go at the HSG, and thus move on to try the gateway drug of choice for infertility, life happened. All these appointments and tests to this point had taken time, over the course of perhaps two years. By 25, I was out of work and while we had my husband's health insurance, it did not cover any kind of testing. Hell, it would be another year or two before his insurance even offered prescription drug coverage. And before you snarkily question what bowling alley he worked for, his employer at the time was a national insurance company. Their employees had worse insurance than you bought from them. Oh, and that fertility doctor? He quit delivering babies and shifted his practice to sexual dysfunction. Our friends never ended up conceiving with his help, either.

To be continued...

*All mistakes are my own. This is the oversimplified, layman's version of events without my bothering to fact check. However, this post should be the last of the medical info dumps in this story.

My PCOS Journey Pt 1

September is a busy awareness month: Childhood Cancer, Prostate Cancer, Sepsis, National Sickle Cell, Head Lice Prevention, National Yoga and more.  Who knew yoga needed a national awareness campaign? Also, whoever is spearheading that campaign needs to ramp up their message. Until a quick search, I was not aware of the awareness.

September is also the month for PCOS awareness, which I am aware of. So with the planets in alignment (or something) here is my own PCOS story:


I have a confession to make. Despite TTC (trying to conceive for those unfamiliar with the infertility shorthand) for more than ten years, I've never been big on TTC blogs, vlogs and the like. I've read some personal stories strictly from women with what I have, PCOS (Polycystic Ovarian Syndrome), in the interest of 1. what it's been like for them/what to expect/validation and 2. what might help. This condition, affecting 1 in every 10 women, is common and commonly misdiagnosed/minimized/dismissed. Almost every step forward I've taken for my health and fertility has been because of my own research, with the exception of one doctor.

And after years of improved blood work, being told I was doing exactly what I needed to, but not gaining any ground on the fertility aspect, I was told to adopt. To clarify, this doctor is an endocrinologist, but not a reproductive endocrinologist. The former you see for a variety of endocrine issues, diabetes, thyroid, etc, the latter you see to get knocked up. Insurance will cover the illness part of my condition, it will not cover the more expensive attempt of knocking someone up. I guess tens of thousands of dollars to do it medically doesn't make sense when so many people do it in the back of a car/bar bathroom/friend's couch with little more than a flavored malt beverage as an expense.

To back up a bit, PCOS has been at play long before I was married and thought I should spend my down time changing diapers and cleaning vomit out of my hair. I started missing periods by the time I was 15, but didn't understand why, and frankly as bad as felt when I did get my periods, I was grateful not to be in the fetal position for several days a month and walk around school afraid I was about to look like an extra from Carrie. And yeah, it was literally that bad. A 13 year old shouldn't have to carry a backpack full of pads to get through the day and still worry about that not being enough. But I just assumed that's what periods were for everybody. All the women/girls I knew complained about cramps. I just didn't realize that mine were off the charts.

It wasn't until the end of my freshman/beginning of my sophomore year that I talked to a girl a year ahead of me and somehow she mentioned that she sometimes didn't get her period for months at a time either. Thinking this was just something some girls went through, I continued to let it go and it never really came up at any doctor visit. Now I can't even be seen for a sinus infection or flu shot without a nurse wanting to know when my last cycle was. And then I get to explain to an annoyed nurse, unfamiliar with this condition, that no, there literally is no chance that I could be pregnant and no I'm completely ignorant of what a missed period would ordinarily indicate. Every.single.time.

Around the beginning of college is the first time I ever heard the term PCOS. I had been seeing the same doctor since the end of high school who finally took notice of how irregular my periods were. It's hard for me to give this woman very much credit. She mentioned PCOS in passing without any info, what it meant, what it caused, if it could be treated. Just that she thought I probably had it. She also balked at giving me my first pap smear. When I asked if I needed one, she told me I should at my age, but she knew I wasn't sexually active. She tried to convince me not to do it because she didn't want to take my virginity. "What about when you get married?" She worried. As a medical professional, she was assuming a lot of things, such as I wasn't lying about being sexually active or a virgin (I wasn't, but plenty of people do). And as a medical professional, she was also potentially putting my health at risk by being more worried at her social norms and morality. My lack of periods could have been a sign of other medical conditions (including cancer) which should have made a pap smear a no-brainer, but hey, if you sleep better because you didn't check me out until after I got married, that's just fine. Uh, no. Also, at a later date and when I was seriously ill and not responding to several rounds of antibiotics, this woman thought I had cancer, but didn't tell me. Moving on...

So this PCOS thing was in the back of my mind for a few years. I had no real idea what it was or if I needed to do anything for it. I got married. I guess that makes my pap smears officially sanctioned, but I had already moved on to another doctor. As a young adult learning that just because you have health insurance doesn't mean you can afford to use it, my fertility wasn't something I was really worried about. To my chagrin now, I was more worried about my husband and I getting pregnant before we were ready, and thankfully our insurance covered birth control. I had been on birth control in college, as the crazy lady doctor put me on it to regulate my periods. Married without insurance and then just married and broke meant bc pills came and went, and I eventually went more than a year without a period.

Ah, the good old days. When I didn't get a period for a whole year and naively didn't have the slightest idea about the ins and outs of what my body needed to be doing on a regular 28ish day cycle.

To be continued.

From the time I was born to the time I got married, my family moved seven times. I went to three different elementary schools in 1st grade (courtesy a move to the next town over and placement in an accelerated learning program) and three middle schools my 7th grade year (my dad was transferred, then got a new job out of state). Halfway through my sophomore year we moved across country again, bringing on another school switch. You would think I'd be really good at making new friends or learning how to fit in, but instead I became really good at being quiet, observing, staying on the peripheral, guarding who I am. Bookish. 

What I excel at, really, is keeping my cards close to the vest. It's been a long process to work on loosening just how guarded I am. I think given my family's history some might expect that I'm hiding some dark secret shame, looking for a safe place to reveal what haunts me. The reality, at least as I chew on the idea at the moment, is I think I'm protecting people from me and protecting myself and my story from judgement.

Not a lot of people I've come across, at least as far as I've tested the bonds of social convention, intelligent exchange and emotional maturity, wouldn't recoil at the idea of a chronically mentally ill mother (by way of severe childhood trauma that shattered a family coupled with high intelligence and probably a predisposition to mental illness), an absent-minded professor crossed with an anti-authority type father (also super intelligent but wounded), with an inappropriate and twisted sense of humor and an affinity for Disney, the macabre, all things British, and (if I'm going to get really honest) collectible fantasy Barbie dolls. You're judging me for the Barbie thing, aren't you? (Don't worry, I judge that part too. Guilty, filthy, gleeful pleasure...)

See, it's not that I'm ashamed of where I come from.. And it's not that I don't like who I am. I've made mistakes. I have had triumphs. And I'm completely aware that I'm a work in constant progress. I have never aspired to really idolize or have a hero. My entire life whenever I've had an assignment to talk about who I'd aspire to be, I've bristled. I've almost never aspired to be anyone other than who I can be. Sure, I've had moments of not liking myself or being pissed at myself for being so stupid or what have you, but I'm pretty proud to say that except for my mistakes, I like myself.  I've always seen the potential of what I can be. 

I think perhaps because of recognizing the value in myself, and probably a hearty dose of childhood bullying, I've taken great pains to protect myself. I've taken great pains how to share who I am, what happens in my life, with the few people I've observed who I think might possibly get it. Not necessarily understand, but won't think I'm tainted (or treat my parents like they are) or think I couldn't possibly be a functional human being and treat me like I'm going to fracture at a moment's notice. I appreciate people who check in and really care, because historically I've reinforced 'friends' to marginalize how I'm doing to lessen their discomfort. But really, I don't want people to be uncomfortable with my story. Some of it is really funny. Some of it is heart-breaking. Some of it infuriates me. Some of it makes me believe that there is a reason for everything. 

I've had a few decades to deal with my family's story. I've had a few decades to figure out where I am in life and make peace with where that is. I'm working on how to relate that to other people. It's a delicate process, at least to my mind, learning how to share the parts of yourself that the average person would blanch and want to escape from. Truly, it doesn't bother me at all. If it sounds staggering to you, chances are that's what makes me nervous. Because that's just a Tuesday in my house. And I'm perfectly okay with that. And so is my dark elf queen Barbie. 

Perspective

Eons ago on a perfectly ordinary day, my fiancé and I made the perfectly ordinary trip to the next town up to visit my brother at his house. I always parked on the street, but first I temporarily parked in his driveway. My fiancé at the time was unable to stand or walk and getting him into his wheelchair on the even concrete of the driveway where he could easily be pushed onto the sidewalk then into the house just made a lot of sense. I had parked the car below the sidewalk leading to the front door so it would be a smooth transition from paved area to paved area, bypassing the lawn completely but leaving the vehicle out in the neighborhood sidewalk near the bottom of the driveway. I had just pulled out the folding wheelchair from the trunk and was setting it up when my brother's next door neighbor, a man well into his 50's and a scowling paranoid troll suspicious of everyone, approached from his lawn.

"Hey! Hey! Parking there makes the kids on the sidewalk have to go out into traffic. People just don't care!" I'm paraphrasing but you get the idea. I was bent over into the passenger side of the car as he continued to rant. When I stood up, settling my fiancé into his wheelchair and I looked over to tell him I'd be happy to move the car once I had taken care of this person's safety and comfort, the gentleman stopped short.

"Oh. Oh I... I didn't have all the information. I'm sorry." Again, paraphrasing. But what I took from the exchange was this: he admitted he didn't have all the facts and he was genuinely sorry. At the time, I may have given him an exasperated look and dismissive it's-no-big-deal shrug. Looking back, part of me appreciates that he probably was sick and tired of seeing kids put in harm's way, or even had dealt with a similar personal tragedy, and said something. Mostly though, I appreciate that this person, a man I cannot remember a single iota of detail about, reinforced a valuable lesson in perspective.

I was planning on writing about something else tonight. I haven't thought about this incident in years, but as I was putting my thoughts together, it jumped to the front of the line and demanded attention. As I sat here working on this post, I started going down tangents leading from the idea of perspective. Keeping a grip on perspective in the face of strong emotional responses. Feeling labeled by other people who lack perspective. But nothing gelled. I realized that for what it's worth, this memory in this post stands on its own.

Blah

I'm mid-blahs, full on shoulder shrugging mood. I think maybe it's the lull between seasons. The end of summer is high birthday season around here. Nieces, milestone birthdays, nephews, what-in-the-name-of-Minecraft-do-they-want, my mom, frantic gift searching, melt your marrow hot outside, rush rush rush. You get the idea. But it's what comes next that I really look forward to every year. Fall, football season, apple everything, Halloween, Thanksgiving, weather cooling off. I love autumn, even if we don't really get that season this far south. 

I'm in a bit of transition myself, as I've said before, working on improving myself and shaking off what or who I think adds negativity. I think it's a few too many transitions, leading me to a kind of autopilot until fall cheer kicks in. It's not that I'm unhappy. Just standard blahs of the first world garden variety. 

BUT, this is my blog and today's post is blah. And that really, truly and sincerely is okay. I know that my day had more positive than blah. I know that last night I laughed so hard with my husband I couldn't breathe and kept relapsing into hysterical fits of laughter for a solid hour later. I know I was productive and knocked out several pages of writing today. I know I was a complete goofball with my dogs off and on and delighted each and every time they let me know how much they enjoyed it. I gleefully watched the very first episode of Sherlock tonight with my husband because he hadn't seen it. PS, after more than a year of badgering, he liked it. Nothing short of a triumph, I tell you.