Thursday, April 24, 2008

Water-logged

I weighed myself earlier, and found I'm about 2 lbs above normal -- and about 4 or so over what I think I really weigh. As I stepped out of the shower, I had my suspicions confirmed: I have grooves where my clothes were. The bra and undie marks could be me getting bigger, but I'd have to gain a lot more weight than this for my socks to be too tight; I have no calves to speak of.

Typically when they talk about bloating, it's premenstrual. Mine is veering more and more to the pre- through postmenstrual. Possibly a change in diet would help this. But I do so love salty, crunchy foods. And low-sodium V-8 tastes like ass.

New back pain

Still bruised, though almost back to normal. I can't tell if any of the lump remains, because I've been reluctant to touch it -- both because I'm sure it will hurt and because I seem to recall a nurse once telling me that if I touch it too much after the aspiration, it will come back. The logic seems to be a bit off on that one, but I am not about to try to prove her wrong.

Now that we've got that out of the way...some actual endo news. Today, in the middle of a 2.5-hour meeting (inhumane), my back started aching terribly. I was convinced my period had restarted itself...and of course I was not wearing black pants. Happily, I was wrong -- all pain, no blood. As far as I can figure, it was from all that inactivity. So I'm going to make a point of moving around once an hour or so. Just shifting position or stretching is not enough.

And one of these days, I'll get back into yoga. Current excuse: I have two couches in my living room, which leaves no room for savasana.

Wednesday, April 23, 2008

Bumpy roads suck

Got the lump drained today. It's still extremely sore, though Dr. tells me it will feel better tomorrow. I believe him...I just wish tomorrow would hurry up. It feels like my breast has been slammed in a door. While the lump is gone, I'm still swollen enough that I have to keep that bra strap loosened a bit. Drove home trying to discreetly hold my breast. Then gave up on discretion. Now I'm thinking I will lay down for a while, maybe see if an ice pack will make it feel better.

I know that, when I finally grace my mother with a grandchild, she would like for it to be a girl. So she can dress the baby in cute clothes. I'm thinking it might be more humane to have a boy...the genetic yuckness I have to pass down to a boy won't show up until he's in his 50s.

EDIT: Ice does not make it feel better. Ice makes it feel worse. Maybe Advil will help.

Tuesday, April 22, 2008

I am a whiner

I thought I'd had breast pain before. I was mistaken. By my rough estimations, this lump is 3 inches across. The breast it's in isn't really big enough for such an invader.

I cannot wait until my doctor's appointment. By this time tomorrow, I will hopefully feel human again.

Monday, April 21, 2008

"No point in ruining your life"

Everything I've read on endometriosis recommends dietary changes to control the disease. Most of it is contradictory, and what isn't is depressing. No dairy. No wheat. No alcohol. For a lacto-ovo vegetarian who loves bread, cheese, and beer, this is the diet from hell. And don't even get me started on the rest of it -- can I eat sunflower seeds or not? Is the fact that soy has estrogen in it good or bad? Supplements: what works? Nobody seems to agree, which leads me to believe they honestly don't know. Hey, I'm ok with you not knowing. Just tell me you don't know. Don't tell me to cut out all the foods I love, then take it back 20 years from now.

Every time I go in for a mammogram, they tell me to cut out caffeine and take vitamin E. Honestly, I think all vitamin E does for me is make me bruise if I so much as look at the corner of a table. And I think the caffeine thing's a load of crap. From my college days up until about four years ago, I drank on average two pots of coffee a day. Even when I was sick. If I got out of bed, I drank coffee. Apropos of nothing (except maybe that the coffee at work tastes like charred feces), I switched to tea. Then green tea. Now I drink on average two cups of green tea a day. I've read that green tea has about a quarter of the caffeine of coffee. Do the math. So I've made this drastic reduction in caffeine consumption, and I've had more lumps in the past four years than I have since I got breasts. My mother completely decaffeinated for a year (not so much as a chocolate chip!), and her doctor told her it did no good -- that if she missed her coffee, she could have it. Again, I think they just don't know.

I brought all this up with my doctor last year during my annual exam (well, not the caffeine/vitamin E thing, as I know they're all convinced of this). Honestly, I was hoping he could sort out the sunflower seed question, as I adore them. He told me he felt we could control this with medicine, and that there was no reason for me to "ruin my life" with this diet. I trust him, so I'm going to try his way a bit longer. (Though I still take E and evening primrose oil, just in case.)

Sunday, April 20, 2008

Refraining from the obvious U2 reference

That prediction about Lamaze breathing in the fetal position came true today. It royally pisses me off that I have to waste a perfectly beautiful afternoon doubled over in pain. Though in a way, I welcome the anger. For too long my emotions have run to the helpless resignation and self-pity end of the spectrum. At least I can do something with anger.

I also requested a doctor's appointment. (I do so love the internets.) Hopefully they'll have an opening soon. I am so ready to have this thing drained.

Yuckness

Today wasn't *so* bad. I've had worse. But I get the feeling things are just getting started. I had some bad moments today -- pain that made me want to fall to my knees, and some severe lightheadedness, but I soldiered on. Though I've been spotting for the past two weeks, today's mess has still been just old blood. And lots of clotting (probably the source of the pain). It's only been a two-pad day, though, so tomorrow will probably be worse.

Actually, that would be preferable. Get the junk over before Monday.

Saturday, April 19, 2008

Life thief

Today is a prime example of why I want to get the endo under control. It's a red-letter day for me -- my new couch, the first piece of real furniture I've ever purchased and something I've been saving for nearly a decade to buy -- is being delivered. It's an absolutely gorgeous day, which in this part of the country is a rare event, indeed. This afternoon, my mother and I are supposed to go to a bead show (though I have no money to buy anything, she will most likely buy beads so I can make her something, which is just as fun). And I'm unsure if I will be able to do anything but lay on my new couch in the fetal position, attempting Lamaze breathing and wishing the weekend were over.

Every month, I go through this. Have to plan around it. This disorder is stealing my life.

Friday, April 18, 2008

Evil Lump

Current mood:


This is about what I look like right now, too. Only my hair is dark. And curly. And I have much less facial hair. It's pouring down rain today. As usual, I had no umbrella or raincoat. So I decided to run to my car. The Evil Lump did not approve. (Yes, I know...second post in my so-called endometriosis blog, and I'm talking about FBD instead. I'll do better next time.)

Evil Lump is not a new lump. It's a reinflated lump. It's also the only lump I've ever named. It's earned it.

One morning two years ago, I woke up with a sharp pain in my left breast. Upon exploration, I discovered a rock-hard lump the size of a golf ball. A lump that had not been there when I went to bed the night before. I've had lumps since I was 19...they're usually nothing. But none of them were ever hard, or hurt that bad. It was only 4 in the morning, but I'd gotten all the sleep I was getting that night.

I spent all day and much of the next pondering my options. My initial reaction to really scary stuff is to ignore it and hope it goes away, but it's kind of hard to ignore a rock in your boob that produces hot-poker pain every time you move. So I finally told my mother. She, of course, told me to call the doctor. And then told me to call back when the earliest appointment I could get was two weeks away.

Yes, I was in pain. Yes, I was worried. But deep down, I didn't expect anything more than an aspiration (which I absolutely hate...I'd rather have dental work) and a pat on the head. What I did not expect was for the doctor to look at the fluid he was draining out of my breast and say "oh." That one syllable was enough to wipe away my piddly little complaints about getting stuck with a needle. Doctors don't say "oh" to me. They pat me on the head and tell me not to worry. At least, that's what they did when I was in my 20s. The rules apparently have changed. Instead of my head pat, I got an appointment for a mammogram. The earliest appointment they had was in two weeks.

No more was I worried. Terrified is a more apt description. Being a planner, I took myself through diagnosis, treatment, and death, wanting to prepare for the worst. I finished my living will, wrote out my wishes for my funeral (not that my mother will follow them, but at least I'll have my say), got together all my important documents, told people I loved them. For two weeks I immersed myself in the concept of my own death. And I realized that there wasn't much about my life I'd miss. I knew a few people would miss me, and I would miss them. But overall, I wasn't crushed at the concept of dying. I was just disappointed that I would now have no time to change that. I understand now what people mean when they speak of a humbling experience.

Of course, it wasn't cancer. I felt incredibly silly, as well as relieved, when the doctor gave me the results. (It also wasn't one lump -- it was one on top of another. I think of it as one lump still because that's what it felt like.) I'd spent two weeks convinced I was dying, and it was just another lump. But it wasn't just another lump. It was the kick in the ass I needed to change my life -- to make it a life I would feel bad about leaving. I've spent the past two years doing just that.

The Evil Lump refilled much more slowly this time. According to my journal, it showed up around March 2, and at first was squishy and the size of a thick Nilla Wafer -- like maybe two back to back. Now it's the size of a golf ball again (I guess the bottom lump filled up), hard, and extremely painful. But it is that time of the month, so I'm chalking the recent growth and tenderness to my body's protest against estrogen. If it's still there next week, though, I'll call the doctor.

And in the meantime, I'm going to go tell people I love them.

EDIT: My darling boyfriend has made me promise I will call the doctor next week no matter what. Apparently from some angles the lump is visible from the outside. What a repulsive thought. From my vantage point, that breast is noticeably bigger than the other one...not surprising, since they're not that big to begin with. So...sometime within the next week, I get to have yet another aspiration. Here's hoping it won't lead to the mammogram/sonogram mess. (I have issues with mammograms, but that's a story for another day.)

Thursday, April 17, 2008

Pain pants

WARNING: This blog is about endometriosis and other yucky girl things. If such subjects turn your stomach, you might want to go look at cute kitties.

Still with me? Good. This is my first public blog, and I'm a bit nervous...go easy on me.

A little backstory on the blog: I've been reading all these articles about the importance of blogging and social networking (usually on other people's blogs), but never felt I had anything to blog about. I mean, sure, I have my personal blogs, shared with friends, but a blog open to the world? What do I have to say that anyone would care about?

Today, I was reading Penelope Trunk's blog about, well, blogging, and she said something that flipped the switch in my mind: "pick a topic you have a lot to say about." I could talk about what I do (copyediting) or what I enjoy (video games, crafts, reading), but quite frankly, I'd rather do those things than talk about them.

However, I do have a lot to say about endometriosis. I've been blogging about it for years, both in my LiveJournal and on 43 Things. I've done what feels like an insane amount of research. My doctor and I have been trying different treatments for years. And I realized that there are probably women (and men!) out there who would be interested in what I'm learning. However, my LiveJournal is only open to my three closest friends (all guys...guys who will probably be grateful that I've moved the yucky posts elsewhere), and it's going to stay that way. My 43t entries are only seen by a select few (though if you're interested, go here). So...here I am.

A little backstory about me: I'm 33, divorced, childless, and was diagnosed with endometriosis when I was 28 -- though I suspect I've had it since I started having periods (14). I also have fibrocystic breast disease, which does not help one bit. My mother had both of these conditions; her mother did not.

A laparoscopy (aforementioned diagnosis) revealed I had minor lesions ("chocolate cysts," my doctor called them), though quite a bit of scarring. He burned them off, and I got three months of "normal" periods before all hell broke loose again. (Note to "normal" women: Those aren't cramps. That is not a heavy flow. Buck up.) I could have another surgery to clean up the new globbies, but I don't feel a mere three months is worth the risk and expense.

My typical symptoms include severe cramps and back pain that can (and frequently do) reach from my waist to my ankles. Hence the blog name. For added fun, the pain is usually accompanied by migraines, severe (read: borderline suicidal) mood swings, and of course the zits and bloating you hear women bitch about.

I've been on a merry-go-round of birth control pill regimens in the past two years. I've been on Yaz since January, and it seems to be working reasonably well....mind you, my definition of "reasonably well" has been drastically altered. I'm also test-driving some of the dietary advice I've read, though I'm probably not devoted enough for it to do any good. More about all that later.

That should be enough to get us started, I think.