Sunday, December 21, 2014

Meat Loaf and I Lay Down the Law

I know I haven't posted in what feels like forever.  I pretty much stopped posting in the spring of 2013.  That's when two things happened - I switched jobs, leaving KPMG where I had been for close to 4 years, and I start trying to have a baby.  Let me summarize for you:
~I worked for the place I went after KPMG for 10 months then switched jobs again - I found something in my field and close to home and was very happy to make the change.
~Shawn graduated college and began working as a nurse.
~I was diagnosed (over time and 3 doctors) with PCOS, Endometriosis, and damaged "fingers" on my fallopian tubes.  I had surgery, take new medicines (which helped me drop 40 pounds), am learning all about the "joys" of fertility treatments, and just this week had a miscarriage.

To be fair, I can't tell you if I'm back for a while or if this will be a one-off post.  I just can't commit to anything one way or another right now, and I know you get that.  But my recent experiences have brought a post out of me that I simply NEED to write today, so here I am.

I'm not sure how often I can say I've turned to Meat Loaf for inspiration, but I've hit on pot, Mater from Cars, and Ewwy Gooey the Worm before so why not.  Nothing's off limits on this blog, right?

In the "golden age" of music that was the 1990s, we were graced - and sometimes assaulted - by many novel artists including Michael Lee Aday, or Meat Loaf, whose first single to hit number one on the Billboard Hot 100 chart was "I'd Do Anything For Love (But I Won't Do That)".  Today this is was my inspiration.  Infertility and miscarriage are hard topics, and I don't even know what to say let alone what other people should say.  But I do know some things that just shouldn't be said at all.

You can tell me anything you want,
That you've been there too or that you've got my back,
Yes you can tell me anything you want,
But just don't say that.

I'm sorry to take the negative route with "don'ts" but sometimes you just have to.

Please, whatever you do, just don't say:

(For infertility)

  • You'll be pregnant in no time.
    • Oh good, you have that crystal ball I've been looking for!  Oh wait, that's right, you don't.  You have NO WAY of knowing if this is true, and while it seems benign on the face, it can be caustic to a person working through infertility.  In my case, this riled me to no end because I knew my body, I knew my medical history, and I knew it just isn't usually in the cards for me to have an easy time doing anything.  I knew in my heart of hearts it was going to be something of a struggle, and this platitude can't be said without being patronizing.  Additionally, if someone has been dealing with infertility for a while already, this is just plain old stupid.
  • Just relax.
    • You can encourage me to redirect my thoughts so I don't become consumed, you can even remind me it won't help to get worked up.  But we're talking about having a baby, the biggest thing that will likely ever happen to any one of us, and it SHOULD be a big deal.  You really want to be my friend through this?  Ask me to do something with you that will take my mind off of it.  Your actions will do far more to help me "relax" than anything you might say.  Not in the area?  Give me a call or send me something to read.  Schedule a time with me where we'll watch a movie at the same time and discuss it.  But don't use the "R-word".
  • If it's God's plan, it will happen.
    • Here's one that toes the line a little.  Yes it's all in God's hands and I believe that (though be respectful if you're dealing with someone who doesn't - this isn't the time to bring them to God) but this one uses the shortest scary word there is: if.  I just don't want to acknowledge that there's an 'if' about this.  Believe me, in the back of my mind I know it's true, but I don't need you bringing it forward.
  • Your child needs a sibling!
    • WHY would you say this?  This is directed toward the person who has a child already.  They're dealing with infertility (or could be miscarriage too), the last thing they need on top of the stress and anxiety and inherent guilt is your added guilt.  Do you think they don't know that their child is continuing to grow up while they're working on another kid?  And furthermore, whether they give birth to another baby, adopt a child, or raise theirs as an only child, what business is it of yours to say anything?  Just do not add your two cents unless explicitly asked.  Period.  The same goes for telling someone without kids that time's ticking or their parents would love to be grandparents.  Just don't.
(For miscarriages)
  • At least you know you can get pregnant.
    • Where do I start with this one?  A) personally, no I do not know I can get pregnant again.  Every medical roadblock I had from the beginning is still there.  This statement is incredibly dismissive of my experiences and my fears.  B) even without my medical history, no woman can be sure she'll conceive.  C) this does NOTHING to diminish the hurt of losing a baby already conceived.  If your five year old was hit by a drunk driver, God forbid, would you be soothed to know you were capable of conceiving and giving birth?  Absolutely not.
  • You'll be pregnant again in no time.
    • See above.  In addition, this ignores the possibility the I may need time to grieve and compose myself before trying again - or even making the decision of whether to try.
  • It's for the best.
    • Are you kidding me?  Moving on.
  • There's always adoption.
    • This one is only a "don't" for timing.  This is true, and many many people will take this option (whether or not they keep trying for a biological baby as well).  I also commend you for letting me know you'll be supportive if I take the adoption route.  But knowing I could remarry wouldn't make me feel better about losing my husband; knowing I can still have children in this way doesn't make me feel better about the baby I don't have anymore.
  • At least you were only a few weeks along.
    • Since Toby from The West Wing gave voice to the words in my head, I'll quote him: "Pregnancy is a binary state.  You either are pregnant or you're not".  I was pregnant.  A day, a week, or 8 months, I was pregnant and now I'm not.  And I'll go you one better.  This wasn't a positive home pregnancy test followed by a period, I had weeks of positive blood tests and several ultrasounds.  I saw the baby's heart beat.  
These are the "do not, under any circumstances" items.  In my opinion, there's also a "tread lightly" list - things that might go over well or might cause a meltdown.  If you want to say one of these things, consider how well you know the person, maybe how long it's been since the miscarriage (if that's the case), etc.
  • God has a plan.
    • Leave out the "if" discussed above and any superfluous preachiness (such as "and His plan will be so great it will heal this hurt"), and this one can work.  It will probably be best received by someone who feels a spiritual connection already but might be ok for other people if, again, you leave the preaching behind.  This can also be worked well for someone who's feeling guilt, to remind them that they aren't fully in control of this, God is, and He does in fact have a plan even if we don't understand it yet.  However this probably shouldn't be the first thing out of your mouth.
  • I think it will work out for you to be a mother, but I know this sucks right now.
    • For the times you want to be the voice of hope without incurring a knee-jerk reaction, this one's pretty good.  It gets your point across - "it'll be ok" - while respecting that the here and now is horrible.  It also subtly tells me it's ok to be hopeful even while grieving which is a surprisingly confusing thought to someone going through a miscarriage.
  • Do you want to talk about it?
    • Personally, I usually respond well when people ask me questions.  It helps me process, organize my own thoughts, and most of the time that's how I come up with my own plans.  And if I don't feel like talking about it, I'll just nicely tell you that (ask me again at your own risk, though).  But some people won't appreciate specific questions, so you may want to outright ask them if it's a good time to talk about it or not.  Or offer "do you want a distraction right now or do you need to process".  Basically asking before doing is probably good.
It occurs to me that in almost every case, the reason these things shouldn't be said is because they are dismissive.  People need their thoughts, fears, feelings, hopes, and concerns validated.  Even if a specific fear is unsubstantiated (which is many times a matter of opinion), you can provide someone with facts about the topic without brushing off the fact they are afraid.  Hell most of the time if a fear really is unfounded, we know that, but we fear it anyway.  Telling us to simply not be afraid makes us feel alone, stupid, and still scared.

So what can you say?  I've been thinking about this too.  Again this is really hard, and I'm definitely not going to suggest there's any specific thing you SHOULD say, but there are some things that I felt worked well.  But be thoughtful - even more than with the "don'ts" and "tread lightlys" above, the "dos" can be extremely subjective so know the person you're talking to.
  • I'm praying for you.
    • You're not asking me to do anything, you're simply telling me you're doing this for me.  I like that.  Also IMO, it doesn't matter what the person's beliefs are for this one, because you're doing the praying.  Even if I for some reason didn't believe it would work, no harm done, right?
  • Can I pray with you?
    • IF you know enough about the person's spiritual life, you'll know if this is a good idea.  But please be prepared to do the verbal praying, don't expect me to say anything except maybe amen.  And if I've already lashed out about why God "did this", maybe skip this one for now.
  • I've been there too.
    • For me, I'm already aware a lot of my friends have been through miscarriages (though seemingly few of them have had trouble conceiving like me, but that's another story).  I also knew posting about mine would bring out more stories, which it did.  But it seems most women don't know people have been through this, and certainly don't know who around them has.  You probably don't want to then launch into a directive of "how to cope" but using the first person you can share your story - "I was completely numb about it for a week; I gave myself two months of not even trying afterward; I broke every plate in the house and passed out from crying".  Good or bad, your reaction was real and it will help me feel more sane for whatever I'm feeling.  BUT, please do NOT say something like "I had two miscarriages but now I have my kids and everything's great".  I'm not at "everything's great" yet, so stick with something more moderate like "you get through it, please know you can talk to me if you want".
  • Let me know if you would like any resources.
    • Many people in my world have resources at the ready - my boss suggested a book other women she knows recommended for miscarriage, for example.  Support groups, websites (BE SURE to proof them first to make sure they have the tone you want your friend to see), books, personal connections to someone else who's been there.  If you don't happen to have a rolodex of resources handy that's fine, some quick Googling or Facebook networking will work wonders, and someone in my shoes might appreciate not having to do the digging themselves to find support.  I guarantee (sad as it is) that someone you know had a miscarriage - if you can find that person they will almost always agree to talk to your other friend.  Just don't reveal your friend's identify even if they've "gone public" themselves - no one wants to be broadcast on the web.
  • There's nothing wrong with you for feeling like that.
    • Whatever I'm feeling, whatever I'm doing to grieve or cope, tell me it's not wrong.  If we're talking about this, I'm almost guaranteed to say something about feeling like it's bad that I'm running errands or that I don't want to try again or that I want to try again right away or something.  I'm going to think I'm doing something that's night right or at least looks not right.  Tell me I'm fine.  Even if you don't understand it, go out on that limb and reassure me I'm not a bad person for it.  
Don't exclude your friend - keep inviting me to showers and first birthdays - but give me an easy out if I'm not up to going.  Sometimes I need to avoid the subject but I also want you to know I'm still your friend and these are the things going on in your life.  So give me the option without the guilt if I say no.  Give me a hug.  Offer to help me if you can - offer to drop off food, take me to an appointment, drive me home.  Be specific so I don't feel like I'm asking too much, or so I can say no thank you.  Care about my spouse too.  Let us know you realize we're both hurting.  We're having enough trouble supporting ourselves and trying to be there for each other, so we can use whatever support you can provide.

And thank you for reading.  Because honestly the BEST thing you can do for me right now is to avoid making me hurt more.

Monday, June 16, 2014

Mother, May I?

As I scan the baker's dozen posts I have in draft, spanning probably a year or more of writing attempts, I think it's time to accept that the days of my more prolific blogging (if I can put it that way) are likely behind me.  Even though it's been far longer since my last posts, I only recently acknowledged that this clearly wasn't the temporary burnout lull I wanted it to be.

Hang on, don't get ahead of me here - I'm not saying I'm done altogether.  Trust me, I'd wax at least a bit more poetic and certain conjure up more valuable sentiments if this were my last post.  This isn't The End, but I think it's time to accept it is a transition point.  Or more precisely, that we passed through this transition some time ago but stubbornly refused to flip over the map and keep going.  It's time now.

Baller pic found here.
In my advanced age (these late-20's years are a doozie, people) I've made the move from permission-seeker to permission-granter; my mother isn't responsible for me anymore, I am.  I grant myself permission to focus my energies on aspects of my life that need more of me right now.  I've always liked my jobs, but I'm finally working in my industry (not-for-profit healthcare) and in a position to put all the skills and ideas I've developed into play.  A new diagnosis of PCOS is also consuming many of my resources - I have so much to learn as well as figure out by trial-and-error, and many plans to reshape.  And who knew that having a whole house (not to mention an insanely fertile (read, overgrown) yard trying to reclaim any cleared area) would take so much time compared to that required by a two room apartment!

I learned something else.  I learned that stepping away from something doesn't mean it isn't important to me.  In fact, I suspect I may make a foray into the world of infertility awareness in the not too distant future.  But for now, I'm going to continue loving the health activism world from a slightly more passive stance.  I need this right now, and I need to be ok with it.  So I'm kicking the guilt out of my life; no more sheepish glances at the Blogger button my toolbar, and I won't be embarrassed to mention my old blog posts as if I had failed.  I had a lot of success so far and between you and me, I think I will again, but I need to live a little more in the middle here.  Thank you for understanding, as I know you do.


Not to leave you on such a "blah" note, here is an excerpt from a conversation I had the other day with a friend.  Sometimes when I go on tirades they are just too funny to keep to ourselves, and public opinion was that I should share this with you.  I want to go on record that I think gender equality means supporting both men and women in their unique gifts and challenges...but there are times when, to use my mother's expression, you just have to call a duck a duck, and this was one of them!

I don't understand engendered fertility.  With absolutely no pain or exertion, the testes produce millions of sperm every day.  They produce so much that men actually, medically, have to expel some of the supply every few days to ensure the quality.  This starts young, they go through a mildly embarrassing phase as they adjust to it, and it continues in many cases until they die or at least until they're too old to care.  Women, on the other hand, go through a potentially very embarrassing phase, which is never really foolproof and can always surprise attack later in life, which can be uncomfortable and annoying at best and more likely involve quite a bit of pain and systemic effects (such as exhaustion, water retention, headaches, etc) just to rid their body of the habitat for the one or POSSIBLY two ovum they produced at a shot.  This issue does eventually disappear but is replaced with a long and equally challenging change process and ultimately followed by imbalances.  And to top it off, sperm released inside the body can survive 2-3 days waiting around for an ovum (just like men to sit around), whereas the ovum, once released, will only take a quick pass through and keep on moving in a 1-2 day span.

Now, I believe in God and all but I can't help but ask "who came UP with this scheme?"

Friday, December 27, 2013

St. Mary Magdalen Church 2013 Christmas Concert

This song, "I Was Touched and I Believe", was my favorite of all the songs we performed at my church's Christmas concert this year.

Yes, I have joined a choir.  The last time I sang with a group was as a college sophomore, 8 years ago.  The reason I stopped for so long?  Damage caused by Sjogren's-induced dryness.

Which, at least to me, makes this that much more of a surprise, and a miracle:)

Anyway, I loved this song because it had a beautiful harmony (I sing alto), and the lyrics were just so amazing...
I believe the little child born of Mary, meek and mild, came to touch my aching soul, and by his touch has made me whole.
What's not to love!

MERRY CHRISTMAS AND HAPPY HOLIDAYS!  Best wishes for whatever winter celebration brings you together with your own family, friends, and passions!



(Video is an excerpt from the concert recording by Jon Dorfman, permission is granted to share with proper credit and citation.  Read more about Jon's work at his blog http://aspieepilogue.wordpress.com/)

Monday, October 7, 2013

Empathy: The Human Connection to Patient Care

To all my activist, patient, caregiver, and professional friends, this is something worth a little more than four minutes of your time. 

I'll leave it to you to take from this what you will, but I can say that to me, a patient, it said "SOMEONE out there has their priorities in order, and is trying to teach that to everyone else", and that's extremely comforting.

If you're up to it, leave a comment on this post with your reactions!  I'd love to see what a little crowdsourcing could accomplish with this striking kickoff.

Saturday, July 6, 2013

Weeds

Snazzy pot pic found for free, here.
No, not that kind, silly!  Geez, what do you take me for, really?

Although, while I've never tried pot myself, as it is slowly becoming legalized in more states across the country (and is already in use in other countries around the world) for medicinal purposes which may be relevant to our UII community, perhaps it will bear further scrutiny at a another point in time.  I may need to find a subject matter expert on this, though.  Hm....

Anyway, no.  I'm not referring to reefer.  I mean the regular old garden-variety weeds (ha, yes, literally in my garden!) which have overrun my home.  In case I forgot to mention it when I started to blog again this year, we bought our first home at the end of December and until now, I never had much of a garden.  I was aware I don't have a green thumb; in fact I think it's downright brown.  I've frequently joked that when they see me coming, houseplants simply die of their own accord to save themselves from suffering at my inept hands.  (Hey I didn't say I was funny, I only said I try to be.)

Then we bought this house.  With roughly a half-acre of land.  And lots of trees, and shrubs, and bushes, and   over a half-dozen flower beds depending on how you count it.  Which abuts an arboretum next to a state park, further fostering the spread of indigenous flora.  Oh my.  At settlement, the sellers told us a bit about all the planting they'd done and how they picked some varieties specifically for certain reasons, yada yada yada, leading me to the conclusion that I would have some impressive blooms come spring and summer and should probably learn how to tend these gardens.  What I didn't expect was that these beds (not to mention the perimeters of the property) appear to be the most fertile soil I've ever seen, as evidenced by the epic proliferance of weeds that have tried to reclaim the land as their own.

That's right, I'm waging war.
Several times already this season, I've taken the largest sheers we have to the front and sides of the house, where the forests of weeds have all but hidden our front door.  My mother in law, who does garden (whew), came over to help me start pulling weeds and thinning the herds of other plantings.  I recall we spent 3-4 hours at it that day and only got about 85% of the way through one flower bed.  We're discovering that there are only a small handful of actual plantings in each bed but the beds have no mulch or anything and are completely overrun.  Speaking of overrun, say hello to the back 35-40% of my property:

Welcome to wisteria gardens...hey, maybe I can make this a destination and charge admission...!
Because what does a beginner (and bumbling) gardener needs on top of hundreds of well-rooted weeds in her flower beds?  Why, a yard full of very mature wisteria of course!  Let me just add, when these vines intertwined in all the trees and shrubs burst forth with these somewhat grape-scented clusters I took to the Google machine and found out what wisteria actually looks like.  I believe this is Japanese Wisteria which, as you can see, has made an impressive climb into these tall trees across mine and my neighbors' yards.  It is beautiful and I don't want to obliterate it altogether, but holy shnikes people, this is a bit much don't you think?!  Oh, and amid the low-lying vines, there are other shrubs and plants and ... dun dun DUN ... poison ivy.  Which means these two little homeowner newbies aren't going in after the vines on our own.  We're thinking of waiting until the fall when it all starts to die down for the season and hiring professionals to hack it back.  Which of course puts images of machete-wielding treasure hunters in my head...
Another amused gardner commented about the use of machetes, here.
(((Shakes head))) Enough of that!

With all of this in mind, I celebrated our nation's birth on my day off Thursday by venturing out to one of my flower beds to claim my independence from these tyrannical weeds.  To guard against excessive sun exposure, bugs, and contact allergic reactions, I donned long jeans, a long-sleeved t-shirt, and my UII baseball cap, and still only got in about 45 minutes of work before the heat was too much.  I was fairly impressed with myself, though, because I took on the absolutely enormous tall weeds along the side of my garage.  You know how they tell you to lift with your legs and not your back?  Apparently I follow these rules, including while pulling weeds, as evidenced by my strungout hamstrings and bottom muscles for the last day and a half!  I also somehow managed to get six - yes, SIX - bug bites on my shoulder blades (THROUGH my shirt) and two on my FACE in that space of time.  For comparison's sake, I haven't really been bitten at all while sitting around the firepit in the evenings.  Seriously?!

My approach to my weeding has been simple - if it looks like a weed, or I simply don't like it, it comes out.  I realize some of the things I'm pulling may be intentional plantings, but I don't like them and there's far too much going on out there!  And after all, it's MY HOME, so it's my choice:)  (That never gets old, haha.)

But I also made one exception.  As I go around yanking and yoinking, I skip over the clover.  I know they're technically weeds too, but it's this cute kind of clover, growing only in small clusters in the beds, and just as I can arbitrarily rule that some non-weed must go, I can dictate that this weed shall stay!
Cutie pies found here.
Besides, in the otherwise unpleasant task of weeding where I see things I don't like (worms, beetles, spiders, ick blech ack ugh), I get a peaceful satisfaction from scanning the surprise clover patches I uncover for that elusive four-leafer.  Haven't found one so far, but I keep looking.

And afterall, I reminded myself, you can't find a four-leaf clover if you pull all the weeds!

I just love it when I sneak a little wisdom in on myself.  Kind of catch myself by surprise, and am reminded of things bigger and greater and grander than me.  I can play demi-god with my flower beds, but ultimately it's not up to me to determine which things should stay and which should go in life.  There are a lot of weeds in my world and in my past, but if all of the negative things went away what kind of person would I be?  I'd have no drive, little ambition, no sympathy, and no purpose.  I'd likely be alone, having run off Shawn and any other worthwhile companions either through my coldness toward others or my blasé approach to life.  Perhaps I'd be living with my parents or worse, in deplorable conditions, never having been inspired to manage money.  And I certainly wouldn't know any of you without a reason to write this blog.

Maybe I am a four-leaf clover.  Maybe my life is the rare find...what are my leaves?  My gifts, my treasures, my capabilities and blessings that make me unique?

  1. My husband and family, who are unique because they give me so much support, and not everyone is this lucky.
  2. My business/financial perspective, which helps me maintain some level of stability in my unstable life and lets me dream big knowing the small will be ok.
  3. My faith, which I know is something every person has a unique relationship with but I have to acknowledge that for my many sickie peers who feel forgotten, I know I am not.
  4. My diagnosis, which underlies everything else.  I need my family's support more than I should because of these medical challenges.  I crave stability for many reasons, including as a counterbalance to the uncertainty about my medical situation even from day to day and over time.  My continued faith is, to some, surprising given the unpleasantries of being diagnosed with a chronic illness in my teens and the chronic challenges that come with that.  
To come full circle, this is my weed.  Without it my life may be cute like the three-leafers we see above, but nothing special; with it, I feel like a rare find:)  And don't think I don't "get it" - I don't think we should necessarily pretend we enjoy the weeds, but we do need to take that step back and look at the whole picture sometimes.  I think it's those moments when we think "just when something was going well, this weed popped up and spoiled it" when we're seeing our fourth leaf and just don't know it.  Keep an eye out for those times that show you how rare a find you are too.