In the interests of being honest, today is a really stinky day.  I was supposed to see the doctor at 8:30 this morning and get my blood drawn to check my hcg level.  It had dropped to 7 as of Monday, so I really expected it to be nothing today – the doctor visit was so that I could complain about the ongoing low-grade fever and weird pains that haven’t gone away.  Apparently, they didn’t actually schedule that visit on Monday like I thought.  Maybe the nurse was irritated with me Monday and just told me to come in so I would shut up.  So I rushed to an appointment that I didn’t actually have.  I agreed to wait until the nurse called back with my lab results to try to see the doctor since “he’ll want to get the results first, anyway.”

The nurse actually called earlier than normal to tell me that my hcg level is officially negative at 3 (it just had to get under 5), and the doctor said that if I still feel bad and am running a fever, then I should go see my g.p. to get it checked out.  It’s frustrating (I really feel more strongly than that, but there’s no adequate word) to be told that a symptom is medically irrelevant for three weeks and then to suddenly be told to go get someone else to check it out because now that the pregnancy is technically over it’s a symptom.  Given that everything but the fever is still a gynecological issue, I’m trying to figure out which doctor, if any, should poke and prod.  My Ob/Gyn will most likely tell me the same thing the specialist did – “It’s just your body trying to get rid of the pregnancy and get all of your hormones back to normal.  You just need to have a period and then everything should go back to normal.”  I don’t know that I could see my internist about this tomorrow without breaking down in his office, most likely leading to the same answer as the Ob/Gyn and a possible psych hold.

And we’re going to the beach for a week with my husband’s family.  I am tired and frustrated, which doesn’t help with packing and trying to tie up the loose ends for work and housekeeping.  I would normally love the beach, but this week it just sounds exhausting and frustrating.  I still can’t really swim right now (girly details that don’t bear typing), and the idea of sitting outside roasting makes me want to hide in a dark closet and sleep for a year, which I’ll have to do if I want to take part in any of the few planned activities this weekend.  A break would be really nice, but this won’t really be a break for me – it will be transporting the angst to a sandy location.  Although, as I told my mother-in-law earlier this week, I can feel like poop anywhere, so I guess it might as well be at the beach.

I actually tallied up the days and weeks of this whole event last night: six weeks of spotting and bleeding with assorted aches, pains and cramps (ongoing), three weeks of fever (ongoing), and five weeks from the hcg nosedive until it finally dropped to negative.  The nurse pointed out that my whole case has been unusual, so there was really nothing they could have done differently.  I feel badly for venting even a little at the nurse because she was just doing her job, but it’s frustrating (again, there should be a more emphatic word) to only be able to function at less than half capacity for almost a month while we waited for things to resolve only to be told to start over with a different doctor.  I think I’m going to wait for a little bit because I’m just as sure as the doctor is that if my hormones will just settle down, everything will go back to normal.  I just don’t remember what normal feels like right now.

Today stinks.  It reeks of frustration and exhaustion and a whole sweaty gym locker full of emotional aromas.  I will be fine, and I know this will end soon enough.  Today at least will end at midnight, so that’s a bonus, and my best friend has impeccable phone timing and got to help me pick up the pieces.  God has given me exactly what I need, when I need it, so I’m going to stop complaining. 😉

A friend at Anchored by Hope (there’s a link to their site on the right side of this page) posted two comment threads yesterday on FB that I thought might be helpful information.  The first asked mothers who miscarried (“butterfly moms’) to share the hurtful things people had said in an effort to comfort them, and the second asked for the most helpful and comforting things people said in response to their loss.  If you’re on FB, you can see the actual responses (and get a little more info about a very sweet and nurturing ministry), but you might have to befriend Anchored ByHope.

I’ve written before about some of the hurtful things people say, and if I am smart enough to figure out the link, I’ll try to re-post it here.  Seeing what other women have heard makes me realize that most of the “wrong” things to say are pretty universal.  Among the worst, in my opinion, are: “You can always have another baby,” “You’re young – you can try again,” “Well, at least you know you can get pregnant,” and “It’s good that it happened so early if there was a problem with the baby.” (That one sounds cruel to me just typing it, but I have heard it too many times to count.)  Among the “churchy” responses, these are some of the hardest to swallow: “God wanted another angel,” “It’s just not God’s will right now*,” and “Have faith.”  The thing about the statement that it wasn’t God’s will is that it is a true statement, and it’s something every butterfly mom will have to accept, but hearing that immediately after a loss really only hurts.  The first few weeks and maybe months after a loss are the times that you need the love of Christ and the support of the body of Christ so that you can gently accept that your plans weren’t his plans.  Beating someone about the head and neck with the will of God is not a constructive way to show your love.

“Have faith” is still the one that kills me.  This one has become my least favorite thing to hear and is not likely to elicit a measured response from me.  I take comfort in the stories that other women have told me about their own experiences, most of which involve eventually having a child.  These women have been brave enough to share their own pain in an effort to help me heal, and I love them tremendously for that gift.  We share a horrible experience that not everyone can understand.  And then there are the people who feel they must share the story of their great-uncle’s friend’s daughter who had a lot of miscarriages, began the process of adopting a child, and then got pregnant with twins, “So don’t give up; God can do anything.  You just have to have faith.”  This conversation nearly ended with the early demise of a choir member last night.  I will at some point talk to her about it and explain why it was hurtful, but I knew I couldn’t control my emotions last night.  I will listen all day long to the people who have actually experienced this kind of loss; I am quickly frustrated by those who are throwing miracle stories at me.

Part of my reasoning here is selfish, and I know it: if God can do these tremendous miracles for all these other people I keep hearing about, then why can’t we just have one normal pregnancy?  But the main reason the “Have faith” people frustrate me is that they are unintentionally undermining my faith.  Obviously, God’s plan for these other people was to have a baby; what if that isn’t God’s plan for me?  Having faith requires that I be willing to follow God’s plan no matter where that leads me, and there’s a better than average possibility that my plan won’t involve a successful pregnancy.  It may involve adoption; it may involve ministry opportunities that children would hinder; it may involve anything God can imagine.  I have faith, do you?  Do you believe that God can do anything, including NOT giving me a child of my own flesh and blood?  If I didn’t have faith, I would not likely be attending church or participating in any ministry activity; if I didn’t believe that God can do anything, I wouldn’t be at church at all – I wouldn’t believe in God at all.  Telling a demonstratively active church member to have faith is a lot like telling a homeless person, “Take care of yourself.”  It’s completely useless and likely to incite a riot of negative emotions.

One sweet friend did tell me to “hang on to Jesus,” and I think that is a different statement altogether than “have faith.”  Hanging on to Jesus to means actively seeking shelter in the storm.  It may not be something that everyone would appreciate hearing, but it was a great gentle reminder to me to keep my focus steadily aimed at the author of my faith.  Based on the feedback on the Anchored by Hope post, most butterfly moms agreed that simpler is better where words of comfort are concerned.  Most of the women who responded said something along the lines of, “I’m so sorry for your loss.”  Several comments included that people should stop there, especially if you’re not sure what to say.  “I’m praying for you,” or “I’m here if you need anything at all,” are also good things to say.  There were some particularly sweet comments that people had heard, but most of us really aren’t that eloquent when we’re thinking on our feet.  We don’t need to be wordsmiths or fabulous orators to convey our sympathy; it is enough just to express our sorrow.  It seems that most butterfly moms (me included) just want to know that someone remembers.  It is totally acceptable to say, “How are you doing?  I know this must be a tough time for you.”  This is good to ask at almost any point after a loss, but especially on anniversaries, lost birthdays, Mother’s Day, and other holidays that tend to be child-centric.

The bottom line is that we want people to express their sympathy, and most women will overlook the occasional foot-in-mouth episode.  If you’re not sure what to say, keep it short and simple.  Do not veer off into weird territory just because you want to say something special.  There are really no words you can say that will provide comfort; comfort is derived from effort and time it takes to express your sympathy, not from any specific combination of letters.  Comfort comes from the love your words convey in between the lines.

I am an obnoxious perfectionist, and I have been pretty adamant about coloring in the lines since I realized there were lines and that they had a purpose.  I like lines because they give me the freedom to create within a defined space; they provide definition and function as a way to measure what’s acceptable and what’s grossly inappropriate. (If I color Cinderella’s skirt on her head, there will be nothing covering her legs, but if I give her a multi-colored skirt, I am still being creative and no one is facing indecent exposure charges.)  I find that this love for the lines has carried over into my adult life – I work best when I have a set schedule and deadlines, I have to-do lists everywhere (including rough drafts that were scrapped for a better line-up of the same tasks), and I flounder a bit without an agenda.  I tend to make my own rules when there are no other apparent guidelines.

A good bit of this need for lines has grown out of the last five years and my need to have structure as a way to hold some bit of control over my own life.  God, of course, has laughed at these attempts, and not a single bit of my manmade delineations survive more than a week before something blows up: the late-night phone call from work that throws off my schedule the next day that kinks up the rest of my week that snowballs into a month of frustration over not finishing a single day according to my schedule or to-do list.  So I just keep moving and stick with “Just do the work.”

I have no idea how to do this with grief or with the frustration I am feeling with my body right now.  I have held the line on not grieving “as one who has no hope” (1 Thessalonians 4:13); I think I’m well inside the lines there.  But where are the rest of the lines?  How can I be angry about my loss without stepping outside the lines of faith?  What is an acceptable expression of angst over a miscarriage that drags on for a month, and when have I ventured into grossly inappropriate in the eyes of Christ?  When does the necessary venting of emotions turn into complaining?  Where are the lines that tell me the dimensions of my safe space so that I don’t wander off the reservation?  I am struggling with working through the grief in ways that honor God and that don’t push me away from him.  It is hard to say on the one hand that I trust him and on the other that I am angry to be in this situation again, this time with a bonus round of seemingly endless complications.  I don’t know how to reconcile those two disparate feelings.

Maybe losing any loved feels this way, but I think miscarriage is a tougher pill to swallow where anger is concerned.  I attended a child-loss support group one time that was somewhat helpful, but most of the parents had lost older children.  They had a target for their anger: cancer, drug addiction, car crash.  I have no real reason for any of our miscarriages; blighted ovum in the first pregnancy is the only one that had a distinct medical diagnosis, and that diagnosis is a little nebulous – at some point the baby stopped developing, and we don’t know why.  I have no direction for my anger – there is no one and nothing to blame.  It is an active fight, bordering on the scale of all out war, not to be angry at God.

This brings me to another line I struggle to find – when is acceptance just fatalism?  People of faith tend to say things like, “This must be God’s plan, so I just need to accept it.”  I don’t disagree with this, but I wonder if sometimes we are using this as an avoidance tactic.  If I say I just have to accept it and move on, I avoid working through the grief by just marching on unless I intentionally confront the emotions, but confronting the emotions means dealing with feelings that may color outside the lines.  Back to looking for the lines again.  Maybe the lines are a little blurrier than I want them to be.

Maybe coloring in the lines of emotion has more to do with how we actually express the feelings.  I can feel anger and express it appropriately by talking about it or screaming as loud as I can when I’m alone in the car, but I shouldn’t take it out on someone else.  I can be sad and depressed and express it by crying or talking, but I can’t drop out of my life and avoid everything.  I think I’m coloring pretty well right now, but it’s hard to be sure without knowing exactly where the pesky lines are.

We have a rather concrete plan now – no sit-ins required.  In fact, the doctor even admitted that he was more frustrated with our case than he has been in a long time.  At least we’re not alone in the frustration department.  The good news is that I don’t warrant surgery, and with the low hcg numbers we’ve had, a d&c and/or laparoscopy probably wouldn’t have been able to find the actual problem anyway.  I am getting an injection of methotrexate tomorrow morning, which is actually a chemotherapy drug.  I’ll get a pretty mild dose which will have the effect of killing off whatever it is that’s still hanging around.  I’ve actually had this treatment before in a different scenario, and it worked pretty quickly – actually the same day.  I’m hoping that by Saturday I will be feeling much better.

I can tell that my body will not handle many more days of this without making me either very ill or extremely uncomfortable, so it’s good that we get to be done with this tomorrow as far as treatment goes.  They drew blood today (of course) to run a CBC to make sure that my liver and kidneys are functioning properly, which means I’ll be unlikely to have any complications from the medicine.  They’ll also re-check the hcg level from that draw, and I’ll have to go in early next week for another hcg level check (of course).  If blood-letting were still a time-honored medical treatment, I should be healthy as a horse right now. 😉  Then we’ll go back in two weeks for a follow-up in office with the doctor.  It’s been a long month, but I think we’re finally getting to wrap this situation up.  Finally.  Does anyone want to say it with me?  Finally.  🙂

My husband is a wonderful, handsome guy.  Don’t you agree?

He adds pizzazz and sparkle (and special additions to photography compositions…) to my life.

He adds joy and fun to my life.

He makes every day an adventure, and I am lucky enough to tag along.

Happy Birthday!

The lab results from yesterday show that my hcg level actually rose to 40, which is not enough to indicate an ongoing pregnancy but is enough to indicate an ongoing problem.  The doctor has determined that now is the time to step in and do something, so I am going in tomorrow afternoon for further evaluation to determine what that intervention will be.  Although the nurse said there might be multiple treatment options, the last thing the doctor really mentioned as an option last week was a d&c.  He might do an ultrasound or more blood work tomorrow, but we should know what his plans are before we leave (at least I might not leave until I have concrete news…).

My husband and I scuba dive, which I highly recommend to anyone who enjoys water and watching things like Shark Week.  There are a few rules to scuba diving, the most important one being breathe normally.  At no point should you ever hold your breath while scuba diving.  Most of the other rules apply to bottom time and how long your body will need to decompress to release the nitrogen that builds up in your system while you’re under water.  For most dives, you have to stop on your ascent at around 20 feet deep and hang out for about three minutes.  It’s the only time you’ll find a whole bunch of divers sitting still holding onto an anchor line; otherwise we’re on the bottom looking for fish, coral and assorted underwater oddities.

Decompression stops are generally the “boring” part of a dive because the only activities are watching the three-minute count down tick by or watching the antics of your fellow divers trying to figure out whose watch or computer is beeping the frantic doomsday warning.  It’s easy to forget that decompression stops are vital to your health.  If you have patiently read through the dive jargon to this point, here’s my point: we need decompression stops in our daily lives, too.  No matter what you are immersed in, you have something that builds stress in your system just like nitrogen builds up in divers, and you have to get rid of it.  You can’t stay under forever or you will die; divers know that it’s a pretty horrific possibility and a great motivation to sit still for three minutes.

I am obviously dealing with grief, but in an average week, I can accumulate a huge amount of stress at work and trying to accomplish all the things I put on my to-do list.  It is a proven fact that I will go completely nuts (usually something along the lines of an old-fashioned hissy fit) if I don’t release that pressure effectively.  My family can testify that I am queen of the throw down tantrum – I mastered it before I turned two.  I  have learned the hard way that I need to stop and decompress, and I have learned several ways to make a good decompression stop.

The most important one for me is to attend church.  At least once a week, I know I will be able to spend time with lovely people, and I will be reminded that my focus has gone wonky through the week.  (This one’s for my GVBC friends.)  Someone or something will remind me that it’s not about me and that I should be about God.  If you are a Christian and you don’t attend church, what are you waiting for?  If you’re not a Christian, decide what your life’s focus is and get to it.  Better yet, go to church with a friend that you love and admire for their sincerity of faith and find out what it’s all about.

I also have a few ways to decompress on a daily basis.  Most of those involve humor.  I love a good laugh, and those can be hard to come by when everything around you frustrates you.  I have no less than three goofy blogs in my RSS feed that are guaranteed to make me laugh at least once a day.  Engrish.com remains my favorite, but my dad turned me on to ThereIFixedIt.com, which runs a pretty close second.  Invisible Cats is hit or miss for me in the humor department, but it’s existence proves that there is an inordinately large cat presence on the interwebs.  Of course, for animal humor, I rarely have to look further than my own yard.  There’s a pretty good bit of offensive language, but DamnYouAutoCorrect.com will make me laugh until I cry since I only look at it about once a month.

As an artsy-fartsy personality, I also write or crochet or craft to decompress, although the punching bag is probably the best physical activity for decompression stops.  I haven’t been able to whack it in a while, but it has returned to a usable place in my basement and is just waiting for me to feel well enough to put on my boxing gloves.  (Yes, I have boxing gloves, and they are pink, and they are fabulous!)  It feels really great to hit something as hard as you can, especially if you yell or grunt at the same time and have a tendency to repress your emotions.  If you haven’t tried boxing, you are welcome to try out my punching bag.  An added bonus is that this activity also involves comedy once I realize how ridiculous I look and sound as I take out my frustrations on an inanimate object while wearing pink boxing gloves, but it really is a great physical release.

Although I just listed a lot of activities that aid in decompression, one factor I can’t stress enough is to share with your friends.  All the time that I held back or even hid what I really felt was miserable and oppressive.  Sharing your struggle to survive your particular circumstances will make the burden lighter and lighter.  I don’t mean that you have to spill your guts all the time to everyone, but at least develop a bank of friends that you can call when a hissy fit looms on the horizon.  My best friend shared “Newsies” and cookie dough with me and turned a crappy week into a much better weekend.  Seeing my friends at church reminded me how blessed I am to be loved.  Now here’s something to get you started on your own decompression stop:

This last week has pushed every limit I thought I had physically, emotionally, mentally, spiritually… Every bit of medical news we have is ambiguous with a hint of menacing, and there is no definitive end in sight.  I have reached the ledge where I am ready to dive into self-pity, and it’s hard to look away from that abyss when I am so frustrated.  I have been running a fever for almost a full week.  This is now the fourth week of continual bleeding, and my hcg level on Thursday was 30 (from 29 on Monday).  It’s hovering around the same level without dropping, which means we’ll have to wait it out at least another week unless my fever spikes over 100.5.  The fever is frustrating on several levels, the first being that I feel almost as bad as when I had the flu – the bright side here being I have no sinus or upper respiratory congestion.  At least I can breathe, but I can’t convince the doctor that 99.5 for me is like 100.5 for people with normal body temperatures.

The nurse encouraged me to try to relax and rest, which I have to do because an hour of activity makes me so tired I need a two hour nap to sit up again.  I have missed another week of work, which isn’t the end of the world, but it does mean that my world is going to stink when I try to get caught up again.  I can’t keep up on housework or do the few big things that need to be done before we can finish a few home improvement projects.  I had finally gotten my feet under me, and now I’m back on my duff indefinitely.  I hate to lose the momentum I had going because I was finally accomplishing some of the bigger tasks I had put off for so long; it was huge boost for my confidence to have those tiny bits of accomplishment every day.  While I wouldn’t call myself super-productive, I don’t do forced inactivity very well.

My husband asked me what I wanted the doctor to do when I expressed my extreme frustration about the situation.  I think what I really want from the doctor and/or from God is a definitive end or a plan, as in, “If your hcg level is still this high in this many days, or if your fever isn’t gone by this day, we’re going to take this action.”  I feel like if I had a deadline, I could talk myself into waiting a bit more patiently.  Watch and wait, possibly for another week or two, is fraying my emotions and my ability to endure anything else.  With the addition of hormones that are completely out of whack, I feel like I’m a step past completely out of control.  It’s hard to comprehend that God IS in control of this situation.  It’s terribly easy to ask him why without accepting his answer, “I am God, and you are not.”  (Read Job; it’s the only answer he ever got from God.)

This week is a “Why me, God?” week.  When will I have suffered enough for this to be over?  If we had to lose this baby, too, why do I have to go through this extra physical complication?  If there’s still an inkling of a chance that we still have a baby, why did we have to go through two weeks of hell to find out?  Why even allow the hcg numbers to stay elevated if it’s only going to break my heart open wider with false hope?  What purpose is this serving, and why can’t it just end?

But those are the human questions, and they’re the wrong ones to ask from a spiritual standpoint.  The tougher questions are, “What am I learning about God through this, and why am I refusing to accept that lesson?”  I wish I were obedient enough to ignore the why’s and the self-pity all the time and just rest on God every moment.  It’s incredible that in a week I have experienced the certain knowledge of the presence of God through an incredible time of corporate worship, and I have experienced the wholly human folly of doubting his power and his plan.  How ridiculous am I that I will argue with the creator of the universe and tell him this plan is no good for me?  When is he enough for me that I can just wait for him and accept that he is God, and I am not?  I am glad for the short-term relief of being honest and asking God the questions, but now I need the long-term knowledge that I can rely on God no matter what.  Now I have reached the no matter what, and at least this time I’m not running away – I’m just having a hard time waiting gracefully.

The hcg level dropped to 29 as of yesterday, so we are at least headed in the right direction.  The only kink now is I am running a fever, which is not a big deal unless it sticks around for awhile or goes any higher.  My body does not do fever well, so I feel like poop.  Other than that, I’ll go back on Monday for another blood draw to check the hcg level.  Again.  And hopefully I will feel a little less like poop tomorrow.