Saturday, March 23, 2013

rainy saturdays & endo ranting

Morning (um- afternoon...) folks. Lest you think I brag about the lovely spring weather in Georgia too much, here's what we're looking at today:

Yeah. Nothing to write home about. So it looks like instead of a day spent in the garden, at the dog park, or reading on the porch, it'll be a day spent darting between indoor activities. Boo.

Yesterday started off with great news-- After the first day of March Madness, I was in SECOND PLACE in my office pool! That's right, I was one of the only people in the universe with the foresight to pick Harvard to win their game. You call it lucky. I call it obvious. I mean, hello. HARVARD. Buncha nerds, right? You gotta root for nerds, people. You just gotta. Give them some respect- they made it to the tournament. Give them something to brag about and get excited about (other than curing diseases, brokering world peace, or whatever it is Harvard students are normally doing during March). 
You notice I did not pick Harvard to win their next game. Let's not be crazy. Basketball's great, but they need to get back to doing Nerd Stuff. I'm sure there are some diseases that need curing. 

I got 13 out of 16 for Day 1. I know I need to go in now and update it with all of yesterdays games, which will probably be significantly less exciting since I've already heard about a few of the teams I picked losing. Oh well. One day of triumphant glory and unashamed gloating was awesome. 

Also, I arrived home from work yesterday to this lovely piece of mail:
 Apparently that love-child I had at age 12 isn't such a secret anymore? Ha. I had a good laugh over this one. 

Last night I had an exciting first-- I received an email from a blog reader (whom I've never 'met' before) to tell me that she saw me at Target! Ha! She said she's been reading my blog for several months but has never commented, etc., but she knew she lived in the same area as she saw me at Target yesterday, but then didn't want to say anything because she thought it would be weird. But then she thought I might have seen HER staring at me, and maybe I would have thought that was weird (for the record, I didn't notice anyone staring or acting strangely at all...apparently I should not be a cop or a spy), so she emailed to let me know it was her. Anyway, I thought it was very sweet and very funny and very crazy. And I was like "oh dude, what was I wearing? Was I acting like a dork? Was I whining at Matt? This is so embarrassing..." but upon retrospect, I think I had a very normal Target trip (albeit with some slow limp-walking; explanation to follow) so I think we're good. For the record, the trip was solely to purchase Les Mis on DVD (WOOO!) and get appropriate snackage for the evening (Oreo Blast ice cream). In other words, it was a very wild and crazy Friday night.

So did you know that March is Endometriosis Awareness Month?
If so-- let's be honest, it's probably because you have endo and are already aware of it all the months, not just in March. But for everyone else-- well, news flash! I hope you don't hold it against me that I waited until the month was almost over before I informed you about it. I mean, just think of all the festivities you could have had all month long...?? Okay, no. I probably wouldn't have even said anything at all except that yesterday had me extremely AWARE of my own endo issues...and by AWARE, I mean I spent most of the day thinking I would die slash crying hysterically slash frantically Googling slash drugged up. So here's your Endo Awareness PSA from me:

ENDO SUCKS. It really does. It hurts. It makes it impossible very challenging for you to have babies. And that hurts, too. It can be (lucky for me!) extremely aggressive- meaning you go from being undiagnosed (not to say that I didn't have it then...just that it wasn't diagnosed) to being a major component of your life and identity. And because it's invisible and not something that anyone can see, and because many people don't understand it and think you just have 'bad cramps' suffer in silence. You sit at work, wrapped up in heating pads, unable to walk due to the pain in your back and thighs, and you cry, praying that no one will come in your office, that no one will need you to come upstairs. You make your husband come over from his office to fetch you the things you can't move around to reach and you really should just go home, but you need to save your sick leave for your next inevitable surgery that will hopefully provide you a few months' respite from the pain. You Google and obsessively read endo message boards so that you feel less alone, so that you know you're not the only one suffering, so that you can get advice about how to deal with the pain, how to get by on those days when this disease sucks the life out of you. You find your mind going very quickly (and probably irrationally, but pain doesn't lend itself to rational thinking) to worst-case scenarios... I know I need to call Dr. S and make an appointment. I know I do. The pain in my legs means there are probably new adhesions in my bowels. What if the pain in my chest and shoulders means I'm one of the really rare ones where the endo has spread into my lungs? I really need to call. But then I'll have to have another surgery. And this time I probably won't get out with both ovaries and both Fallopian tubes. The left side was so, so damaged last time-- he's already said they're essentially useless. As horrible as they're feeling now, it's probably not even worth keeping them. So if I let him go in again, I'll probably leave with only half of my not-so-awesome reproductive system left in me. And even though that might not be what happens, probably isn't what will happen...well, it could be. It's what happens to a lot of other girls in my shoes. And even though my left ovary and tube aren't really doing me any good, I still sort of WANT THEM, you know? I mean, I wish they didn't cause me a hell of a lot of pain. But the thought of losing them makes me a little hysterical. And so I put off making the appointment, because maybe if I can make it through today and tomorrow and this week, maybe it won't be this bad next time. Maybe I'll get tougher. I tell myself that. I also tell myself that I should go ahead and get an appointment now, because if I really do end up needing surgery every 6 months, it'd be better to get the first one of 2013 over with now so that the next one will be in the same calendar year and basically free, since I'll have met my out-of-pocket max already. I love when money and insurance become the main factor in making health decisions, don't you? 

Endometriosis sucks, people. The's almost too much. When your greatest fantasies involve going to the ER so that they'll give you morphine so that you can quit shaking from the know your life is something special. When your greatest fear is that your husband will get tired of taking care of you all the time and having to cancel plans because you can't walk or stop's tough. It's really, really tough. And I'm not the only one dealing with this. RESOLVE says that there are over 176 million women globally that suffer from endo, with the societal costs totaling over $100 BILLION per YEAR. And there is no cure. So put that in your pipe and smoke it. (And nerds at Harvard-- put down your basketballs and get back to curing diseases. Some of us could really use some hope.)

I didn't mean to be such a downer, but you is Endo Awareness Month. I don't want to present too rosy a picture of how life with endo is. You know, on the good days, it's not so bad. It's the bad days that count. And the fear of the bad days that seems to permeate the good days. And the fear that like many women, someday my bad days could start outnumbering my good days-- I am so thankful that right now, they definitely do not. But they could. After my surgery in August, Dr. S said that he was concerned with how aggressive my endo was-- there was marked growth in the month between my last ultrasound and surgery. He said he wouldn't be surprised to see a significant amount of re-growth within six months (which woulda been February). At the time, I thought he was crazy. Right now, I'm pretty sure he was right. I could make an appointment and find out. Maybe I will. Maybe I'll try to tough it out a bit longer.

 Aren't you glad I'm not always this depressing? Blame it on the rain. For the record, I feel a lot better today than I did yesterday, although my legs and back feel really...weak...trembly...for lack of better descriptors...from the cramping yesterday. Mattie is taking good care of me and I'm hoping to feel better enough to go to an art opening tonight with Matt and some ladies from work. And I own the Les Mis DVD now, so I probably will need to watch all the special features (we watched the movie last night-- although the smaller screen (than a movie theater) was a downer, there are distinct advantages to watching it at home, such as you can pause the movie when you need a mental or potty break). So it's going to be a good day, I think. Oh, and I just had some bacon. So...there's that. Have a good Saturday, yall.


  1. This is awful and makes me really sad! I hate that endo is winning this weekend. I'm going to take a moment to be all parental… call the doctor. I just did on thursday (CD 1 when I thought about a hysterectomy), so maybe we can be surgery partners? Boo. I hate this for you. I hate that you're in pain and I hate that this stupid disease could take part of your body, a particularly special and kind of important part of your body. It just sucks! And I'm so sorry! I hope you can enjoy this rainy weekend by resting on the couch and singing Les Mis at the top of your lungs! Feel better friend!

  2. I just left this song on Aubrey's blog and I'm leaving it here, too: go listen to "He Said" by Group 1 Crew. I'm sure you've already heard it before (Amanda passed it on to me, so I'm assuming she passed it onto you if you didn't already know of it), but I can't listen to it without feeling encouraged. Hoping it does the same for you!

  3. Ugh, it's rainy here today too. All day it looks like. It's been so pretty!! Go away, rain!

    My sister has endo; somehow i missed that it was endo awareness month. I am so sorry that you had it bad yesterday & are still weak/shaky today. I will pray for you right now. :( Seriously! Hope you get some relief.

    Ahhhh! I love Les Mis. They're doing it at our local theatre this summer & i helped with auditions. They ended up giving the role of valjean to two guys b/c they just could not pick one (the guys will split the performances). This is awesome b/c we NEVER have a good amount of guys show! 230 people showed for this audition, and probably just as many guys as girls. They aren't announcing the cast list until Monday which is making everyone crazy (especially the ones that auditioned but apparently didn't make it - b/c they should've gotten a call if they were cast). Anyway, it's SO exciting!!

    That is hilarious/crazy a girl saw you at Target. It's so weird, every once in awhile i'll be out & about & think i see a blog friend. But then I'm like, "that's ridiculous, she lives in Minnesota" or something. HA! But cool this girl actually lives where you do & saw you! :)

  4. I'm thankful that God gave you Matt... and Les Mis... and bacon. I hate that the endo won't just disappear for you. If I ever do get that million dollars, I promise a round of endo surgery and a bonus round of IVF (or treatment of your choice) are on me :) Love you, friend!

    Also, ditto to the song Allison suggested. For when you need a song to cry to, however, I highly recommend "Rain" by Patty Griffith, especially for today!

  5. Listen to the song Allison told us about. (Thanks Allison)
    I hate endo so much for you!
    I just saw that Yankee candle has a bacon scented candle and thought of you.
    I also thought of you when I ordered my honeybaked ham for Easter this morning :)

    I hope you're feeling better, friend!

  6. (And nerds at Harvard-- put down your basketballs and get back to curing diseases. Some of us could really use some hope.) You always make me laugh and smile - even on such serious topics!!

    I am sorry for all of the pain you are dealing with. This sounds horrible. I dont know anything about Endo, but something tells me that you should not just hope to get tougher and tougher! You should do what the recommend (which I think is call the doctor!) I hope you are in less pain today!

  7. Matt's never gonna get tired of taking care of you. That's one thing you need not worry about. Am I right Matt? Yep, thought so.

    Love you. I hate this for you.

  8. Your blog posts make me cry with laughter and then cry with sadness a lot. This was another one. I am praying that today is a better day for you and thank you so much for sharing about "Endo Awareness Month." You really put a very personal (and emotional) spin on it and it makes it so much more real. Here's hoping those Harvard nerds find a cure soon.

  9. All of this makes me hurt for you. I have nothing to compare it to, and I can't imagine it. You are tough. So don't think you aren't. By the way, how was that Oreo Blast ice cream??

  10. I have to say that I'm glad for endo month because even as someone in the infertility community, I don't know much about endo or about what it's like to live with it. So thank you, thank you for sharing.


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