Dealing with derailments

Before I even got over my sinus infection, I started my period. And it’s the period I expected to have after 90-some days. (I appreciated being let off easy last month, but I knew I’d pay the piper eventually.) So September’s kind of a wash. At the start of the month, the house was clean, I was on track with all my goals, and everything was running like clockwork. Now it’s just chaos.

I’m working on learning to better deal with derailments such as this. I read an article on the topic earlier this week, something about things like this being the down side of relying on routines. But because of the aforementioned chaos, I have lost the link and cannot find it back. You’ll just have to take my word for it: Sometimes routines fall apart, and they take the whole house of cards with them.

The first thing I’m working on is forgiving myself for the lost progress. So far I am not kicking myself too much for the blow to my workout plan; the fact that I actively miss working out means I will take it back up again just as soon as I am able. And that’s really what I am aiming for with these challenges — not to do some weird stunt for a month and then quit, but train myself to exercise each day, just as I brush and floss and clean my contacts each day. I’ve done it before; I can do it again.

Speaking of brushing, I bought a Quip toothbrush, and it’s got me brushing twice a day. I have been trying for years to get into a morning brushing habit, and never managed to pull it off. But I enjoy brushing with the Quip so much that once a day just isn’t enough. It’s amazing what a comfortable toothbrush can do. It takes some of the sting out of failing in all these other areas to have taken on a habit I’ve been trying to cultivate for over a decade.

Yesterday really drove home the need to practice regular self-care. I had just nursed Kai to sleep when I felt a sharp pain in my chest that quickly moved to my back and radiated out to my side. I ordinarily brush these things off, but I’m 43 and a former smoker with a heart murmur and a rotten cardiac family history. I felt I should rule out heart attack before I grabbed the heating pad.

I was home alone with a sleeping Kai; Anya was with my parents. I debated my options. Ask my father, who can barely walk due to an ankle injury, to bring Mom’s SpO2 meter to me, or to watch Kai so I could go to his house and use it? Wake Kai and take him over there? I didn’t think I could safely carry him. Finally, the obvious occurred to me, and I asked Mom to send Anya over with it. My levels were, as always, stellar, so I did some stretches and got on with my day.

Later on, it became obvious to me that the pain was due to stresses from my current work setup (tablet at the kitchen table) and from carrying Kai’s ever-increasing weight. Yoga and time will fix it. And if I continue doing the yoga after my back feels better, the pain likely won’t recur. But I have to make the time to do the yoga.

At the beginning of this month, I’d decided to do yoga on the days I can’t jog, but then I came down with this sinus infection. Derailed again. However, the stretches I need to do for my back do not require me to hang upside down; I can do them even with a head full of crap. So step two in my derailment management plan is to modify the plan in the face of speed bumps. No, I can’t run, or do downward dog, or do crunches. But I can, and should, do some cobras and cat/cows and half moons.

Fall is my favorite season, but it’s also the one most likely to disrupt my progress. This fall, I’m going to work on dealing with those setbacks — forgiving myself for not being able to uphold the promises I made to myself, and modifying my goals to accommodate the snags. I may not get where I wanted to go as quickly as I had planned, but so long as I do eventually get there, what does it matter?

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Pausal updates

Hopefully I am close to starting my period; I started on progesterone this past Friday. Which means I should be starting within this next week, though my doctor did warn me it could be three weeks before it does its thing. Hope not, because I am miserable.

I saw my gyno last Friday; he told me he didn’t feel anything in my belly that shouldn’t be there (yay!), and prescribed the progesterone so I’d start my period. After one dose, I was already less bloated and swollen. (Cold, though. I remember that from my pregnancy with Kai; large amounts of progesterone make me cold.) So apparently my issue has been a hormonal imbalance? Let’s hope this course will set me back on track.

Extra progesterone also gives me pimples, apparently. And here I thought I was all but done with those.

Other updates from the checkup: It’s not possible to say whether my crazy periods are the result of perimenopause or lactational menopause. Not that there’s a huge difference in terms of symptoms now — the end result is the same, regardless of the cause — but the game could renew once I stop nursing Kai. Which, given how I’ve felt as of late, means I could have a fair amount of endo suffering ahead of me. Sigh.

On the up side, I don’t have to have a mammogram until I stop nursing. Pleased to hear that.

Especially pleased to hear I’m healthy, though. Having missed last year’s checkup due to my layoff, I was pretty nervous…especially when all these weird symptoms started cropping up.

Anya has started cooing over nursery furnishings again, and Kai has started loving up babies. And I’m just not there this time. Oh, I would adore having another baby. But it’s not the time, and I don’t think it will be again.

Get a Clue

One of the things I wish had been around when I was younger is period trackers. I tracked my period on a paper calendar, but all I noted was the day it started. I have random anecdotal evidence (letters, journal entries) that refer to the occasional symptom or period duration, but otherwise I’m relying on my memories for details of my periods up until the age of 35, when I was introduced to Fertility Friend. I used FF faithfully (even when I wasn’t trying to conceive) until I resumed my cycles (such as they are) after I had Kai.

I use Clue now, hence the post title. If you look at my tracker, you’ll see I track mostly custom symptoms.

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The black squares are custom symptoms. (I have a lot of symptoms.)

When I was younger, tracking things like how my hair and skin were on a given day, whether I was productive or not, or how energetic I felt (all built in to the Clue app) would have been extremely useful. I remember from my TTC days that days in which I crushed my to-do list were sure-fire indicators that Aunt Flo was en route. Now I track other things: If I have trouble deciding what to wear. If I eat alllll day long. (Toying with adding “sweet or salty?” to that one, on the off chance that there’s any significance.) If my joints hurt. (I’m noticing a connection between achy joints and hormone surges, though I don’t know yet what it means.) If I had hot flashes that day. (Ditto.) If I’m cramping, or if I merely have pain in my lower back and/or my cesarean scar.

I wish more than anything there were a menopause tracker. That I could drop in these symptoms and it’d compare me to other women going through The Change and make predictions for me, like FF does with fertility. I could especially use peer comparision — matching my cycles with women my same age who also are breastfeeding. But alas. So I track my weird little collection of symptoms. Who knows — maybe I’ll notice a pattern to these crazy cycles after a while. Right now they seem so random.

It’s not that I need to track. I’ll start or I won’t, whether or not I track anything. Tracking used to give me a ballpark range for when my period might start. That sort of thing is utterly meaningless now. But it’s interesting to me to see the patterns from the 30,000 feet view. It’s also giving me a greater understanding of the inner workings of my body, much as trying to get pregnant did. (I learned a lot when we were TTC. And I thought I was well educated already!) Which means I’ll have a solid knowledge base when my daughter starts having periods. That’s coming up sooner than I can deal with.

Wishful pausing?

I’m beginning to wonder if I really am in perimenopause, or if my body is simply confused by all this breastfeeding. I haven’t had much in the way of hot flashes these past few weeks, and the rest of my symptoms could simply be related to breastfeeding. Or stress. Or endometriosis.

Let’s be honest: My body never did figure this menstruation thing out, and it’s far too late to worry about that now.

I’ve always assumed, based on my mother’s experience, that I would go through menopause early. There’s no firm basis for this belief; my maternal grandmother died at the age of 49 without having gone through The Change. But as my menstrual experience has closely mirrored my mother’s (we even started at the same age — 4 months before our 14th birthdays), I figured my end would also come at roughly the same age as hers.

But then I threw a curve: Two late pregnancies, and one extended breastfeeding experience. Even if I were close to menopause, I might have altered the end date by continuing to nurse Kai.

It also occurs to me that my interpretation of my symptoms might all be so much wishful thinking. I want to go through menopause. I love being a mom, don’t get me wrong, and it wouldn’t be awful (thought it would be rather inconvenient at this point) to have another child. But I am done with endometriosis. Done with the pain. Done with the swelling, the bloating, the mood swings. Done with wearing a panty liner day after day for months on end, just in case I might start, for fear of ruining my clothing. (Also done with ruining my clothing.) Done with periods that last 10-14 days, draining me emotionally as well as physically. Done with scheduling my life around a natural bodily function. But really — it’s the pain. The constant, unrelievable, never-ending pain. The pain that, at best, makes my entire abdomen feel like a hand that’s been slammed in a car door. The pain that feels like a spike in my tailbone. The pain that makes it hard to bathe, dress, walk, hold my children, think, breathe, be. The pain steals my hours, days, weeks.

I’m ready for the next stage. The stage in which I can produce something other than children and blood and pain.

The media bombards us with women who fight time. Who resist aging both inside and out. Women who turn to science to produce children when their bodies are past the age at which they can do so naturally. The women who nip this and tuck that. What of the women who accept it, embrace it, and move into their new role with grace — with enthusiasm?

Because there is a place for women who can’t reproduce. In the animal world, and in the human world, too. (What, you didn’t think animals went through menopause? Honestly, neither did I.)

I want the time and space to create. I find myself brimming with more creative energy than I’ve had in years, and I want to feel well enough to use it. I want to write, make jewelry, paint, garden. This morning, as I lay awake in the predawn hours, I found myself planning sewing projects — me, who barely knows how to use my own sewing machine. I want to try my hand at cooking new dishes, take up new hobbies, learn. I want to put more time and effort into the Etsy store I created with my daughter.

If I weren’t laid up in agonizing pain for great portions of my life, just think of what I could do with all that time. It could be the start of a whole new life for me.

Is it any wonder I’m ready to begin?

Wish in one hand, and judge in the other…

One of the hardest things to overcome is the fact that our experiences are immensely personal. This makes it hard for us to walk in someone else’s shoes, at least without conscious effort. It’s even more difficult to reach understanding on some topics than others.

Menstruation is a minefield, in part because it’s something all biologically female persons do. (Apologies if I phrased that wrong; cisgender female here.)  I noticed early on in my menstruating days that women were far less sympathetic towards my complaints than men. If I told a female teacher I was cramping, she’d roll her eyes and tell me to go sit back down. (The exception: Mrs. Nute, my accounting teacher, kept a stockpile of menstruation supplies in her classroom, and let me sit in the restroom for the entire class if that’s what I needed to do. Thank you for that. You restored my faith in women.) If I told a male teacher I was cramping, he’d let me go to the nurse to lie down. It wasn’t until I was much, much older that I figured out the distinction: most women don’t cramp the way I do.

I’ve read that endometriosis pains can be more severe than heart attack pains. Having never had a heart attack, I can’t vouch for that. I can say they’re more severe than any labor pains I’ve experienced (though I had an epidural a few hours in to my induction, so my labor didn’t really get very far). My cramps, at their worst, are so bad that I’ve wondered how a person could hurt that bad and not die. They are by far the worst pain I’ve ever experienced, and I’ve had two major abdominal surgeries.

The other day, I chimed in on a discussion in a menstruation-related group on Facebook. This woman was looking for suggestions for pain relief, as she was having severe cramps and had a class to attend that night. She had already tried heat and stretching, so I suggested my standby nonprescription remedies: Aleve (though I did not mention that I take the prescription dosage, because I’d rather not cause a stranger on the internet to OD) and knee butterflies (opening and closing your knees like a butterfly’s wings while sitting — these have gotten me through many a class and commute). She clarified that the class was a martial arts class, so the butterflies would be impossible. Someone else remarked that taking pain relievers only invited ulcers, and the original poster replied that she refused to take them because she felt cramps were a natural pain to be dealt with by natural methods.

They probably didn’t intend it to come across this way, but that felt like a slap in the face.

I replied that I was glad they had that option, but that some of us have no choice but to risk ulcers.

It was then I realized why all those teachers rolled their eyes at me. At 15, I was experiencing pain like they’d never felt. At 15. The pain, of course, only got worse as I got older.

I get it. I am not immune to the judgy. I am particularly disdainful of my fellow drivers when I get behind the wheel. Listening to my daughter snark at the car ahead of me for having the audacity to stop at a yellow light, I realize what an unmitigated bitch I can be at times. I have been practicing reframing my thoughts: When a driver zooms past and cuts me off while talking on his cell phone, I have been trying to think not “asshole” but “He is probably a daddy, on the phone with his sick baby, and she’s crying for him to come home.” But breaking decades-old habits is hard, and I am far from perfect.

Facebook highlights the judgy in us all. Conversations that used to take place in private settings with like-minded individuals are now broadcast to a town square of people who often have nothing more in common than a person they knew years ago, and everybody feels entitled to add their two cents. Should someone point out that some of the things being said could be construed as hurtful, they are immediately accused of being special snowflakes and derided for having hurt feewings. And the judgement spiral begins.

I blame social media for the great divide in this country. And I’m only half kidding when I say that. We all got along a lot better when we didn’t know how our neighbors felt about stuff.

Joe Hedges, an artistic crush of mine since the late 90s, said that he is in an abusive relationship with Facebook. I laughed out loud when I read that, but it was an uneasy laugh because that’s the most fitting metaphor I’ve encountered yet. Seeing such vitriol spewed by people I consider friends, or at least acquaintances, makes me want to retreat entirely from the world.

So I filter out everyone who doesn’t think just like me, and then I feel like part of the problem.

It would be very easy for me to just flip the proverbial table and give up on people as a whole; I was misanthropic long before FB came along. But this year I am trying to do things differently. So I am instead working on reframing my thoughts and actions.

Embrace hope. Radiate love.

When they go low, we go high.

Paradigm shift

Speaking of change…

Google says that people going through menopause may experience pain during intercourse, fatigue, night sweats, osteoporosis, hot flashes, sweating, early awakening or insomnia, absence of menstruation or irregular menstruation, dryness or loss of scalp hair, anxiety, dry skin, irritability, moodiness, reduced sex drive, and vaginal dryness. Mayo Clinic adds weight gain and loss of breast fullness. The site 34 Menopause Symptoms adds a few more, including difficulty concentrating, memory lapses, dizziness, brittle nails, headaches, joint pain, and digestive problems.

Of the above list, I don’t have osteoporosis. (I had a nasty fall a few weeks ago; if I had osteoporosis, or even osteopenia, I’d have broken something.) I was having hot flashes for a while there, but they went away after a month. And hair loss? Yes. You may question the hair loss, but believe me — this mop is a shadow of its former fluffiness.

Of course, I’ve also read that many (maybe all) of these symptoms are also attributable to breastfeeding. Which I’m still doing, and have no plans of stopping until Kai wants to stop. In fact, one of the (many, MANY) resources I’ve read on the topic suggests that the effect breastfeeding has on the body is a sort of menopause; it’s just not permanent. So the parallel symptoms make sense.

I have not had a period in three months. I occasionally have back pain, bloating, and cramps, but thus far they have resolved themselves without a period. I sometimes dream about finding blood in my underwear, but aside from a handful of weird cycles in the middle of last year, I haven’t had a single period. And I don’t miss them one little bit.

It’s not impossible that I am perimenopausal. Talk about life changes and new stages.

So…how do I feel about that?

Do I feel a pang when I see all the pregnant bellies around me? (Seems like everyone is pregnant right now.) Yes. Also when I walk past the tiny-baby section of the baby clothes. They stay that small such a short, short time, and you don’t get that many little ones to enjoy. (Unless, I guess, you are a Duggar.) I am not done cuddling sweet bundles, not ready to give up smelling that new-baby smell. But let’s be honest: A third baby was not happening. I’m older, and the risks are higher. We’re broke. I didn’t have such an easy time with the last pregnancy as I did with the first one. Giving birth, for me, requires major abdominal surgery, which seriously sucks. A third child would mean a bigger house, a bigger car. Someone would have to leave the family bed, and there would be resentment. Also, R and I would be outnumbered.

I’m not sure we are up for that. Any of it.

So let’s focus on the positives: Zero breast lumps. (For me, that’s amazing. I’m kind of surprised I have any boobs at all without them.) I’m not free of pain, not yet, but my monthly aches are much reduced, and I have hope that I will stop having periods all together before the excruciating periods return. (And before I eat a hole in my stomach with the pain relievers.) As someone who has planned her life around her menstrual cycle for the past 30 years, saying that I’m looking forward to not having them anymore is an understatement. How many people with chronic illness actually overcome those issues and go on to lead a normal life? With the exception of my pregnancies and this bout of lactational amenorrhea, I have spent roughly 2 weeks out of every 4 in excruciating pain from the time I was a teenager. I have been dreaming of menopause since I was in high school — not that I was wishing away my youth and my fertility, but that kind of pain really wears at you. I am so ready for it to be over.

I’m growing and changing in a lot of ways this year. This is not one of them; I will not be more or less of a woman when I go through menopause. But it’ll be different.

Just another sign that life goes on.

Endometriosis: After my diagnosis

This post is also about menstruation. You’ve been warned.

Part one of this story can be found here.

My diagnosis was just the beginning. Because there is no cure for endometriosis. Nobody knows what causes it; without that knowledge, the best I can hope for is symptom management. Which is not as easy to achieve as it sounds; what works for one woman won’t necessarily work for another.

The search for relief

Somebody floated the idea that women didn’t have to bleed every month. What if they had 3-4 periods a year? That wouldn’t be so bad, would it? I talked to my doctor about it, and we decided to give it a try. Not using the spiffy (expensive) pill they’d made just for that purpose, but just with my normal pill. I merely threw out the placebo pills and started a new pack after 21 days. I had to get another note from my doctor, for the pharmacy, so I could get the new pill packs every 3 weeks as opposed to every 4 weeks. (The insurance company took umbrage, until my doctor explained that I was taking the pill for a medical condition, not so I could be promiscuous and get out of having periods.)

Though I took the placebo pills after 3 months, like I was supposed to, I didn’t have a period for 6 months. That one was a doozy; I missed a week of work. I began to suspect that this method wasn’t going to work so well for me. It was like I was making up for lost time with that period, like it was 6 months’ worth of periods rolled into one. And given the choice, I’d rather have my periods one at a time, thank you.

I also developed the worst breast cyst of my life. I woke up in the middle of the night with a golf ball of fire in one breast. It was benign, thankfully. But it’s never really gone away; I’ve had it drained three times since then.

So. Continual synthetic hormones are not for me. I went back to my monthly cycle.

I should take a moment to mention the costs associated with all of these medications. I truly was at the mercy of my insurance company. Sometimes my pills were $10 a month. More often, though, they were $35 and up. One year, I was spending $50 a month on them. And that’s just the birth control pills – there’s also the pain medication to consider. Drugs like naproxen, Mobic, Lyrica, Darvocet. Darvocet was the cheapest – $10 a month. But I couldn’t take Darvocet and drive, so I used it sparingly. Naproxen was the best for getting me back to my regularly scheduled life, but I quickly built up a tolerance to it, rendering it ineffective. So I also used it sparingly. Mobic was great until they took it off the market because of scary side effects. Lyrica didn’t do a thing for the pain, but it made me care a little less about it.

So my options were to writhe in pain on the couch with a buzz or without. That was the best modern medicine could do for me. And I paid dearly for the privilege – sometimes upwards of $100 a month.

I could’ve bought a car with the money I spent on this disease.

Because the pain was getting worse, and the medications were becoming more expensive and less effective, I started doing my own research and trying alternative treatments. Diet modifications. Fistfuls of supplements. Massage. Yoga. Meditation. I’d have tried acupuncture if I could have afforded it. I did manage to identify some triggers (soy in particular), and found some stretches that took the edge off the worst pains, but nothing really helped. I started buying heating pads two at a time so I had a backup in case one died. (And I used them so much that I did wear out several.) I kept a spare at the office, too, just in case.

In one of the books I read on the subject, the author asserted that menstruation should “never, ever hurt.” I burst into tears when I read that sentence. I’m misting up now, just writing about it. Because I’ve spent so much of my life in pain, and nobody has been able to do anything about it.

Pregnancy would most likely help, my doctor informed me. But it’s obviously not something to enter into lightly. Or at all, if you don’t have a father handy. Which I didn’t for much of my young adult life. Though I did research procuring some donor sperm at one point.

But finally, my chance at motherhood arrived.

The pregnancies

When I was 35, my partner and I decided to try for a baby. We’d been dating for three years, and felt it was a natural progression in our relationship. So I went off the pill, and almost immediately I noticed an improvement in my cycles. Within a few months, my formerly erratic cycle settled into a fairly regular 29-day pattern. (So much for the pill’s regulating effects.) My skin also cleared up, not that it was ever that bad to begin with. My periods were lighter, and less painful, and my PMS was less onerous. It was still no walk in the park, though. And because I was trying to get pregnant, I couldn’t take anything for the pain until I knew for certain I’d not conceived that month – until I saw blood, in other words. By this point, I typically experienced cramps and back pain from ovulation through day 3-4 of my cycle. And I couldn’t have so much as an aspirin.

Not that it would have helped anyway.

Finally, after a couple of miscarriages, I got pregnant. And it was glorious. Yes, I had morning sickness (and afternoon/evening/overnight sickness). Round ligament pain. Tender breasts. Dizziness. Headaches. Heartburn. Backaches. Swollen ankles. Carpal tunnel pain. But I didn’t have cramps.

It was the best I’d felt since childhood.

After I gave birth, I experienced postpartum hemorrhaging. But I didn’t realize it at first. Because I was told to expect heavy bleeding. Turns out they meant heavy like my periods are heavy, not “soak an overnight in 15 seconds” heavy.

For whatever reason (I suspect the hemorrhaging was a factor), I was unable to breastfeed my daughter; I simply did not produce enough milk. So my periods returned 3 months postpartum. They were heavier than normal (my black jeans saw more wear than they’d ever experienced), but not so painful at first. Then each passing cycle brought more pain, until I was back on the meds again. But not the pill, because who needs that noise? Also I’m old now, and they don’t like to give the pill to old women.

A couple of years passed, and we started talking about a second baby. I wanted there to be at least three years between the kids, because I didn’t want two kids in diapers at the same time. So we waited, and when my daughter was 2 and a half, we decided to try again.

The month we decided we’d start trying, I missed my period. I also missed the next two periods. Finally had to go to the doctor for a magic pill to start me again. Which is always unpleasant. But you can’t exactly try for a baby if you’re not having periods, now, can you?

A few months later, after a couple of chemical pregnancies, one finally stuck. I was pregnant with my son.

I had worse morning sickness this time around. Chills. Dizzy spells. Back pain and front pain and side pain. Anxiety attacks. Heartburn. Insanely itchy skin. But no cramps.

It was marvelous.

Breastfeeding and beyond

Four days after I gave birth to my son, I awoke to breasts the size of my face, and understood once and for all that my inability to breastfeed my daughter was through no fault of my own. I happily nursed my son, thankful for this second chance at breastfeeding.

My bleeding was already winding down before I left the hospital. (!) I was far more mobile and able-bodied than I’d been after my first cesarean: I was going for walks at 3 weeks, doing crunches at 6 weeks. Increases in activity would occasionally trigger another bout of bleeding, but I was pretty well done with pads by 8 weeks.

And I’ve not bled since. My son, now nearly 15 months, still nurses 4-5 times a day (including overnight), and that’s apparently enough to keep my cycles at bay.

I’m dreading their return. It’s been a wonderful couple of years. I’m already looking ahead to menopause with more anticipation than dread.Sometimes I think the best possible scenario is one in which I go straight from breastfeeding amenorrhea to menopause. But deep down, I know that won’t be how it goes. My period will have to have one last hurrah before it leaves me for good.

Probably just in time for my daughter to start having her own periods.

Still no cure

I wish I had better advice for my daughter. Do yoga. Meditate. Don’t eat soy. Keep a spare heating pad. Get pregnant. These are my pearls of wisdom. And they’re not enough. She (and I) will likely bleed until at least age 50. That’s 36 years of bleeding, over 430 periods (not including the missed cycles, of course) – around 8 years of our lives spent in agony, all together.

And there’s still no cure.

There’s not even really a decent treatment.

That’s unacceptable to me. The thought that my bright, vivacious daughter could be incapacitated for nearly a decade of her life by a natural bodily function. Whatever I can do to bring awareness to this condition, I will do.

No girl, no woman should have to endure this.